Nothing Special: The Mostly True, Sometimes Funny Tales of Two Sisters 0819580287, 9780819580283

Citation preview

nothing special

A Driftless Connecticut Series Book This book is a 2021 selection in the Driftless Connecticut Series, for an outstanding book in any field on a Connecticut topic or written by a Connecticut author.

nothing special [ the mostly true, sometimes funny tales of two sisters ]

Dianne Bilyak

Wesleyan University Press

Middletown, Connecticut

Wesleyan University Press Middletown CT 06459 www.wesleyan.edu/wespress © 2021 Dianne Ellen Bilyak All rights reserved Manufactured in the United States of America Designed by Mindy Basinger Hill Typeset in Adobe Caslon Pro All photos courtesy of the author. The Driftless Connecticut Series is funded by the Beatrice Fox Auerbach Foundation Fund at the Hartford Foundation for Public Giving Library of Congress Cataloging-in-Publication Data Names: Bilyak, Dianne Ellen, 1966– author. Title: Nothing special : the mostly true, sometimes funny tales of two sisters / Dianne Bilyak. Description: Middletown, Connecticut : Wesleyan University Press, [2021] | Series: Driftless Connecticut Identifiers: LCCN 2020045927 (print) | LCCN 2020045926 (ebook) | ISBN 9780819580283 (cloth) | ISBN 9780819580290 (trade paperback) | ISBN 9780819580306 (ebook) Subjects: LCSH: Bilyak, Dianne Ellen, 1966– | Bilyak, Christine, 1965– | People with disabilities—Family relationships—Connecticut—Biography. | Down syndrome—Patients—Connecticut—Biography. | Anxiety Disorders— Patients—Connecticut—Biography. | Sisters—Connecticut—Biography. Classification: LCC HV1552.3 .B55 2021 (ebook) | LCC HV1552.3 (print) | DDC 362.19685/88420092 [B] — dc23 LC record available at https://lccn.loc.gov/2020045927 5

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Front cover illustration: Easter photo of Chris and Dianne at their grandparents’ house on 1 Grant Avenue, Stafford Springs, Connecticut, 1971. Courtesy of the author.

To my fellow siblings who have their own stories, both lovely and difficult. May you find ways to be seen and heard. To all the people with Down syndrome I’ve had the pleasure of interacting with who taught me that it’s who we are and how we treat others that truly matters. And to my inimitable sister, Chris Bilyak, thanks for making my life interesting and fun, for always singing with me in the car, for “liking me a lot,” and teaching me that dancing can solve most problems.

If the memory of pain haunts you, and you live your life afraid to be in pain, then you are in a disabled state. Stephen Kuusisto

Contents Author’s Note Part one

xiii

C + D: Early Snapshots 1

The Art of Losing Trisomy 21

3

5

Get in the Car

9

C + D: Early Snapshots Fa(r)ther

23

Holy Rollers Gawk Part two

15

28

35

“Can You Take Me with You?” 41 The Lovely Bus

43

Slumber Party Massacre

49

Looking for the Spotlight “Well, Ya Flunked” To: Dick; From: Santa

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61 65

“Can You Take Me with You?”

71

Darkness and Heights and Speed, Oh My!

79

Part three

Land of the Lost Years

Cain & Dis-Abel-d

85

87

The Origin of Dr. Irma King Acts of Contrition

95

101

Land of the Lost Years 107 Breaking Point The Abyss

112 119

Mass Hysteria

125

Final Admissions Part four

129

“Make It Better” 139

Three of a Kind 141 Tomorrow, Tomorrow, and Tomorrowland Out Singled

153

Hear, Here

158

Agency 163 “Make It Better” Self-Portrait

172 177

Epilogue: Make Ends Meet

181

145

Author’s Note When I asked my sister, my only sibling, Christine, a.k.a. Chrissie, Chris, or Christopher, “If I write a book with stories about us what should I say about you?” she answered: 1. I am very sorry I took Charlene’s chips last week. 2. I will earn my gifts and cookies and ice cream. 3. Christopher is right all of the time. My response to number three was, “We’ll just see about that.” Chris has Down syndrome. She doesn’t like to write much and reads on a first-grade level, so if one of us is going to chronicle the stories of our lives, both together and apart, it has to be me. I’ve tried to dig into her psyche and include her perspective as much as possible, but she has no interest in the examined life and gets annoyed when I prod. She can’t meaningfully consent to being depicted here, but then again, neither can my dead father, and he gets plenty of ink. While my relationship with my sister is at the heart of this book, and for that matter, my life, this story is my own, shaped by my experiences and limitations. Fortunately, I’ve been able to align my memories and deepen my understandings with help from many people. My mother still starts most of her sentences with “your sister,” and then goes into a five-minute oration about something Chris did. Various aunts, cousins, and some dear family friends and former babysitters were willing to go back in time and offer their perspectives and what they remember. When I first began writing down some of the stories that became this book, it was around the time I’d read Barbara Kingsolver’s The Poisonwood

Dianne + Chris, 1966.*

Bible, a novel predominantly about sisters. The following excerpt stayed with me, “Desperate to save myself in a river of people saving themselves. And if they chanced to look down and see me struggling underneath them, they saw that even the crooked girl believed her own life was precious.” These words pushed me to continue to shape my writing into essays that I’d read in various venues. On the occasions I dared to imagine I’d adapt the essays into a manuscript, and that the manuscript would be published as a book, I’d joke that it would probably instigate a lawsuit from the National Down Syndrome Congress alleging I’d violated my sister’s civil rights, and any royalties would be used for legal fees. News outlets would make me out to be a monster, while my sister would be seen as a victim and be elevated to a media darling. To make good use of her time in the spotlight, Chris would hire an agent, along with a manager, to coordinate her many invitations to speaking engagements and talk shows. Since she was used to having a staff administer to her needs, she’d be a natural at stardom. In this counterfactual universe, she’d ask me to ghostwrite her self-help autobiography, You Do What I Say, and I’d have no choice but to obey. It would become a bestseller, and when Oprah Winfrey chose it for her book club, Chris would accompany Oprah to Canyon Ranch for a major detox and a meeting with the Dalai Lama. I then pictured Chris and Oprah partnering with some members of the Kennedy family to start a retreat center called Down Syndrome Nation (DSN). Designed and operated entirely by people with Down syndrome, DSN would become a leader in intentional community living. Unlike other retreat centers, DSN would offer open snack bars, hug therapy, checker circles, meditative tidying, and life coaches who, instead of conducting planning sessions and improvement exercises, would offer only positive affirmations. DSN might start as a place, but it would become much more than that—a way of life, a method of thinking, a model, and a practice—not a way of doing, but of being. I’d begin working at an indie bookstore where everyone would wonder if I’d met Oprah. After work I’d return home to write sad poems and fuss over my newly adopted cat. My sister might answer the phone when I’d call to indulge me for a few seconds of chitchat, but then she’d hand me off to one of her many assistants. On my birthday and for Christmas every xv

year, one of those assistants would send me a free pass for a retreat week at DSN and a gift card to T.J.Maxx. These musings were mostly absurd, but there was some truth in there. Over the years, I’ve experienced being overshadowed by my sister, and neglected by my parents. If she was the “special one,” what was I? I’ve also felt uneasy about exposing these feelings, fearful of being judged by others if I told my truth. These were uncomfortable emotions, and I needed to work through them. But they weren’t my only feelings. I’ve also felt protective of Chris, delighted by her, and grateful for our relationship. I want to be very clear that my sister is not defined by lack. “Disability,” as activists and scholars remind us, is a condition that arises because society fails to make room for the full range of our humanity, and gets hung up on norms instead of ways to support all people with the accommodations each deserves to live an inclusive life. My own life, in different but overlapping ways, has also been defined by external circumstances and expectations. I’ve allowed myself to be delayed, as it were, by a host of forces, and I’ve had to adjust and ask for help to meet those challenges. For most of our lives, Chris and I have treated each other as equals. Like many typical siblings, we used to fight over everything and laugh over anything. We’re still prone to compete over the smallest things and tease one another mercilessly, even if it means making a scene. We are like two class clowns with a mafia streak—entertaining, unless you so much as look at us funny. Then, not only will we always defend each other, but we’ll stand together and find a way to make you pay. Disclaimers Some names have been changed by the person’s request or for reasons of anonymity. At the time of printing, this author used person/people/individual(s) with a disability or I/DD, and so on. These are accepted terms in the culture. I am sure it will change and evolve. No disrespect is intended.

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part one C+D

[early snapshots]

One of the only four pictures taken of us as a family (Dick, Dianne, Nancy, and Chris), circa 1968.

The Art of Losing It is close to midnight. It is time for bed. I fold my glasses and place them on the bookshelf next to my chair. I close my book and toss it to the floor. Under the covers I remove my socks with my feet and push them toward an assembly of others. I insert my earplugs and turn off the lamp. My father is the closest to me, but only in proximity. He’s 1.7 miles away. If you want to visit him you have to cross the railroad tracks twice, one time near the old mill, and again after you enter the cemetery. A box bears his body; his stone, our name. My mother is one state over, 70.1 miles away. I know she’s in bed by now, but have no idea if she’s sleeping. She has insomnia. Earlier, I know she struggled to keep her eyes open while watching TV. If I were visiting she’d have taken out a bowl and spoon, a box of cereal, and a mug and placed them near the coffee maker so she wouldn’t make too much noise in the morning before she left for 8 a.m. Mass. My sister is over an hour away, 57 miles between us and 17.8 between her and our mother. She went to bed at 8:30 p.m., lying on her back after putting her hearing aids in their case. From the bathroom, her nightlight sheds its faint and dusky glow across her face. Once she falls asleep her measured inhales and exhales will soften her room and everything in it. Now, I’m remembering the house where we last slept under the same roof, the house my parents had built in 1965 shortly after they were married, the house where Chris and I grew up. My parents met at the Statler Hilton in Hartford, Connecticut, where my father was the new apprentice chef and my mother worked as the office secretary. My smitten father lied and said he was writing a book and wanted to hire her to type it. He went to her hometown one Saturday night, supposedly to discuss this project, but really to woo her. He took her to the Italian restaurant frequented by the

locals. The wooing worked. A year later they married in her town, at her church, and began to build their life there. The house stood in the winding hills that stretched up from the area many townies used to call “Downstreet.” It was a red Dutch Colonial with a nice yard, in a nice neighborhood, in a town that had gone from bustling to bedroom once most of the mills closed and the passenger train stopped running in the late 1940s. Soon after they moved in, my mother, at age 25, became the last of her four siblings to have children, giving birth to my sister Christine in 1965. Three months later, my mother was pregnant with me. In 1966, I had the same due date as my sister, but arrived four days early. Chris and I are Irish twins. When I can’t sleep I map out each room in that red house as I remember it—where the furniture was placed, which braided rug, handmade by my mother with wool from the town’s textile mills, covered each floor, what items we kept where: linens and towels at the top of the stairs, pencils in the chaotic junk drawer near the fridge, and in the dining room hutch, a wedding gift of barely used Lenox dishes. Chris and I had moved out by the mid-90s. In 2003 my parents downsized to a condo and sold the house. When it was on the market again in 2016, my mother asked me to accompany her to see how it had been remodeled. When we arrived, I went straight to the closet in my old bedroom. It had been Christine’s bedroom first, and we liked to fill the space with pillows and cocoon ourselves in there. When we were four and five, we smuggled in crayons and colored on part of the scratchy white wall. Our mother never caught us. In 2016, when I slid the closet door open, I could still decipher our first story: faded lines and circles spelling out We are here.

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Trisomy 21 When my sister was about two months shy of her fourth birthday and experiencing some motor issues, Aunt Barbara, my mother’s sister-in-law and a nurse, told my mother she thought Chris had Perthes disease, which is a rare hip condition affecting children. My mother’s sister, my aunt Ginny, recommended Dr. Pelican, the pediatrician she brought her two girls to. My mother made an appointment, and because my father was away at work, her father brought her and Christine to the doctor. My mother says that when Doctor Pelican entered the examination room and saw Chris sitting on the table, he took one look at her, and before my mother could even begin to discuss the possibility of Perthes, proclaimed, “When your sister referred you I wasn’t told your daughter was a mongoloid idiot.” As the doctor inspected my sister, he droned on, delivering the kind of monologue that was culturally and medically acceptable for many decades, when people with disabilities were falsely considered uneducable, or even subhuman: “Have you considered putting her in an institution? That is what most people do since she will probably die before she is 18, and if she lives longer, she will only be able to do some menial job, like hairdressing.” In shock, and not even sure what a “mongoloid idiot” was, my mother and grandfather exited the office with Chris and cried in the waiting room. Over the next month my sister was tested, and it was confirmed she had mongolism, now known as Down syndrome or trisomy 21. Soon after conception, fetuses with trisomy 21 spontaneously created an extra copy of chromosome 21 in every cell. My parents went to a geneticist at Yale to

Nancy and Chris, circa 1966.

each get tested, and to ascertain how my sister might have developed the condition. The conclusion? It was a fluke. Sometimes it’s tough for me to grasp why no one had expressed concern about Chris’s development. Sure, she reached many of her milestones within the normal range and was just a little behind schedule with crawling, walking, and toilet training. And my mother was able to measure Chris’s progress alongside our many cousins, three of whom were born within a few months of my sister. But she also had some difficulty swallowing, and her speech was slow to develop. In old photos, Chris often looks like a typical infant, baby, or toddler. But in some she exhibits certain vague disparities in her facial features that are common to those with her condition. Searching the web for the types of medical information so easily available today, I read that people with Down syndrome have “Eyes shaped like almonds, flatter faces, especially the nose, small ears, which may fold over a bit at the top, tiny white spots in the colored part of their eyes, and their tongue may stick out of the mouth. They may have small hands and feet with: A crease that runs across the palm of the hand, short fingers, small pinkies that curve toward the thumbs. They may also have: Low muscle tone, loose joints, short height, short neck, and a small head.”* When I really concentrate, I can see how some of that does describe Chris. She has small teeth, a slightly tilted head, a crooked grin, and blue eyes that reflect light like still waters. Occasionally she has a sleepy expression that offers a cryptic mix of faraway and immediate. But mostly, when I look at Chris, I simply see my sister. And when she laughs in her high-pitched giggle, sometimes for no reason whatsoever, even at my expense, I laugh, too. What mostly astounds me is the almost four-year gap between my sister’s birth and diagnosis. Some of the people I wish I could ask have already died, and others were unwilling to offer much. A couple of family members admitted they suspected something was different about Chris, but chose not to divulge their suspicions. Still, our family physician, who lived around the corner and made regular house calls, only admitted he’d *From https://www.webmd.com/children/understanding-down-syndrome -symptoms as of July 2020. 7

known about my sister’s Down syndrome after it was confirmed by Dr. Pelican. He said he hadn’t informed my mother because he wanted Chris and her to have a chance to bond. Perhaps it was because our town was less than 20 minutes from an institution that warehoused many people with disabilities, and as Dr. Pelican said, it was still common to isolate infants from their families in these places. I don’t know if either physician was aware of how much the children there were susceptible to neglect and abuse, and that such treatment kept them from learning and thriving, which worsened their conditions and shortened their life expectancies, often more so than their disabilities. After Christine’s official diagnosis, what changed for my family? My mother says she mostly feared the unknown. This was new territory for her, and our rural Connecticut town was not filled with resources for families with kids who were differently abled. Nor was most of the rest of the country. Donna, a teenager next-door who babysat for us, remembers my mom crying a lot. My mother said my father distanced himself even more from us. And how much was I aware that our family life was changing in response to my sister’s diagnosis? Prior to that, Chris and I were raised as equals, and then we weren’t. We were both considered normal, and then she wasn’t. Yet those first three years when I experienced my sister as only my sister, not my sister with a condition, fused a normative bond between us. Soon after she was labeled, Chris started school a few towns away. From 7:30 a.m. to 1:00 p.m. weekdays, we were separated for the first time. I was glad to get an extra year of being home with my mother and I finally forged my first distinct memory of the two of us without my sister. Weekly, she took me to the town library where I sat in her lap and we listened to story hour. Carol, the children’s librarian, would read to us about Sal and her blueberries and Max with his warm supper waiting outside his door after his romp with the wild things. I’d pick out some books to take home and then stand on the wooden stool at the bubbler to slurp water for as long as I wanted while my mom checked out my books. Once outside, we looked both ways for oncoming traffic, and when it was safe we crossed the street holding each other’s hands.

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Get in the Car In those formative years our mother was forever in motion, like a wave advancing or retreating from our shores. She oscillated and reciprocated; there was very little stillness inside her. For me, it wasn’t always easy being the daughter of this motion. Sometimes the only way to handle her unpredictability was to keep a distant watch from dry and accommodating sand. If I tried to swim out, I might get stuck in the waves, or possibly drown in their undertow. At home, Chris and I were aware our mother was there, but not always where she was; she was ubiquitous but peripheral. When we were in earshot, we’d know she was in the kitchen when we heard the buzzing of the rotary phone’s dial as it was pulled forward and fell back into place. She paced from room to room, tugging the curled cord behind her while conversing with friends, neighbors, family, and fellow members of the different organizations where she volunteered. In order to survive raising two young children born less than a year apart, mostly without her husband to co-parent, our mother kept us in constant motion, too. She played ball with us and sang songs. She was silly, and if we were upset she teased us to make us laugh. She pushed us to always go one step further, to try a little harder and do a little more: climb one more stair, take one more bite, recite one more letter of the alphabet. We were reprimanded when we forgot to say our pleases, thank-yous, excuse-mes, and God-bless-yous. We had excellent manners. On Sundays and holidays, since we all lived in town, our mother’s siblings and our cousins congregated for noontime dinner at our grandparents’ place. In our small town of 8,000 residents, the house was notable, white with black shutters and white pillars, built in the 1800s. I sometimes felt lost in the hubbub of our extended family, but more often, they insulated

me in a safe bubble. My grandparents had 19 grandchildren and four greatgrandchildren, and with the exception of a couple of the boys, they all were accepting and kind, and Chris and I knew we belonged. We kids would start a game of hide-and-seek in the finished basement, which smelled musty from heating oil and the exposed rocks of the foundation, or play pretend on “the big rock” outside. The big rock was also the setting for our favorite pastime, reenacting Little House on the Prairie with our cousins Lori and Lynn. I’d play Laura, a.k.a. Half-Pint, Lori was Pa, Chris was Ma, and Lynn was Mary. Pa narrated and directed us on the homestead, where we’d prepare mud pies and rhododendron salads, progressing through a whole week of pioneer activities in just a couple hours. Our clannish ways were similar to a lot of town families, for whom immigration to America was still a recent memory. My great-grandparents left Italy and took a steerage ship from Le Havre, France, to America in 1907, but their son Geno chose to stay in his hometown with his grandparents and make the journey west on his own time. My grandfather was conceived in Italy and born in America. Since Geno decided to stay in Italy, it took 60 years, and a trip by my grandfather across the ocean, for the brothers to meet. Small wonder that, when he started his own family, Poppy, as some of us called my grandfather, kept his children close, even after they’d grown. Poppy was affectionately known as Pop, because he was always on the go and popping up around town. When he became a politician, he once said in an interview that of his five kids, Nancy, my mother, had the likeliest disposition to hold office. As an extrovert, she was prepared to be helpful whether people wanted help or not, and made daily rounds in our town like an ambassador. We spent a lot of time getting in and out of the car. The people on our circuit tended to be Italian or Irish relatives, Roman Catholics and Democrats, or some combination thereof. We’d bounce between Mary and Rose’s (mother and daughter), Joe and Josephine’s (town funeral director and wife), our mother’s high school friends with kids our ages, or our neighbors: Dottie and Neddie, the Zoras, and the Ziembas. Weekdays we had lunch at our grandmother’s with our aunt Ginny and Lori and Lynn. The women watched soap operas and smoked while we played in the cellar or on the big rock. Almost all the adults smoked, and most of them drank, too. 10

Chris on the toilet, and Dianne on the floor, reading, circa 1968.

During summer months if anyone had a pond, pool, or place on the lake, we might hit him or her up to cool off and stay for supper. Besides celebrating most holidays with my mother’s family, we hosted and attended birthday parties, graduations, showers, christenings, first Communions, confirmations, weddings, wakes, funerals, sporting events, concerts, and plays. Add to that political rallies, church bazaars, weekly Mass, parades, and our calendar was always full. When we were at a house where there were no kids, my sister and I tried to score sweets—usually the offerings were hard candies like butterscotch, cinnamon, and root beer barrels. They were mixed together and sold in one bag that should have come with instructions on how to do the Heimlich maneuver. I was also a big snooper, but I couldn’t do that with Chris who, like my mother, was always more oceanic: noisy, outgoing, open, and on the move. To ditch her with the adults, I’d say I had to go to the bathroom. On my way there, curious to see what people had hidden away and thrilled to be doing something slightly bad, I’d open any available drawers, check closets, and eventually make my way into the bathroom, the only place I could usually lock the door, for some real exploration. But that was the extent of my adventurousness. My motto has mostly been better safe than sorry. Back home at the red house, I felt more comfortable taking in the view from the porch, but Chris was a real trailblazer, tantalized by the possibility of escaping to freedom. When she was five, she climbed into our mother’s Impala and lifted the parking brake, which sent the car coasting into our backyard. Our mother saw it from the kitchen window and ran out. She said she found Chris sitting on the driver’s side floor, smiling; the car had miraculously stopped before a series of trees. One summer morning my sister got up at 7:00 a.m. while the rest of the family was sleeping. She opened the gate at the top of the stairs, unlocked the front door, and headed outside. Mrs. Masker, who lived around the block, found Chris and brought her home unscathed. My sister was looking for Mrs. Masker’s daughter Charlene, our beloved babysitter. Later that day, our mother screwed hook and eye locks on the outside of both our doors, even though I’d stayed put. After that, when Chris and I would wake, we’d lie on the floor behind our newly secured doors and whisper to each other through the cracks underneath. I’d push out part of my blanket until it touched the bottom of 12

her door and she’d clutch it. This created a supple, pacifying bridge between us. Eventually, we’d want to be released, but instead of asking to be let out we slowly inhaled air to make this loud revving noise like a chainsaw being started to annoy our mom so she’d finally set us free.

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Chris + Dianne on Halloween, circa 1970.

C + D . Early Snapshots I recently found an early photograph of Chris and me wearing store-bought Halloween costumes. One of us is dressed as a witch, the other a princess. It took me some time to figure out who was who. Our crinkly plastic masks resembled giant scabs, secured to our faces with the type of elastic that inevitably broke immediately after we’d set out to trick-ortreat. We are the same height, with the same shoes, and wearing matching snowsuits under our costumes. I finally deciphered our identities when I noticed a familiar gesture my sister makes—tilting one hand up with her fingers askew. Alas, Chris is the princess, and I am the witch. I should have known. My mother’s nickname for Chris was “Princess,” and sometimes “Petunia,” but to my mother, I was always “Di,” pronounced “die.” Chris took an early liking to regal nicknames, and as the years went on, she began calling our mother “The Queen” or “Queenie” and our father “The Polish Prince” or “The King.” But Chris has always called me “Sister.” This has seemed both a term of endearment and a way to remind me I have no jurisdiction over her: as siblings, our relationship exists on an even plane. There’s something of that sentiment in my mother’s notation on the back of the photo, which reads simply “C + D.” During our early years my sister and I were inseparable. Our mother often dressed us alike, and for special occasions we wore handmade, matching dresses she’d sewn. We crafted tents in the family room using a card table and blankets. We made up songs on the swingset and got in trouble for eating the neighbor’s cat food, which we’d thought was cereal. We locked ourselves in the bathroom when the doctor came to give us shots, and we once locked our mom out of our grandparents’ small cottage on the Rhode Island shore. While Chris and I sat on the couch laughing, she was outside in her nightgown without underwear, and our neighbor, a guy she

went to high school with, had to hoist her through an unlocked window. Our mother did not find it very funny. Chris and I are also joined in the notes our mother kept to track what we ate and how we slept, up until we were three and two years old. She’d write, “C + D: scrambled eggs at 7:20,” “C + D: nap at 2.” Our bathroom habits were not synched, but they were still recorded in detail. As time went on, some of our patterns diverged: “C slept well, D up all night,” or “C ate lunch, D hardly ate.” Though our mother meticulously recorded our daily activities, she sometimes had selective forgetfulness when it came to me; only the first two pages are filled in my baby book. I know she was busy and exhausted with two babies to care for, and that later, she was probably consumed with worry about Chris’s future and her educational needs. But when I was young, I felt insignificant. She also compared the two of us. “On your sister’s first day of school,” my mother points out, “she didn’t even wave goodbye, just waltzed right in. Not you, though. On your first day of kindergarten, Tracy Katz’s mother and I had to follow your bus while you watched out the back window.” Note how she suggests that I, small and trapped inside of a school bus, was able through the sheer power of my anxiety to force two grown women to drive a car behind me. It’s true I got nervous, so I think it was a sweet thing for her to do, but I felt inadequate when she’d bring it up, especially to other people. A wonderful respite from family life and a great leveler for the two of us was that Chris and I were in the same Scout troop. We started with Brownies and our leader called the shots. We were encouraged to be smart, strong, and speak up. But Girl Scouts eventually highlighted the difference between our ability to be self-sufficient. During day and night camps, Chris was just fine being away from our mother, but I once became so homesick our mom had to pick me up early. I’m sure she wasn’t pleased to drive the 30 minutes to come get me. In 1973, like most young girls in the country, we’d learned of the tragic abduction of seven-year-old Janice Pockett from Tolland, Connecticut. Since Tolland borders Stafford, our parents were more protecctive, and we were continuously warned about strangers and safety.

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When I was nine, I went to my first sleepover at a fellow Scout’s house, Jeanette, without my sister. As soon as it got dark, my phantom stomachache, the one that allowed me the excuse I needed to avoid something, cropped up, and my friend’s mom called my mother to pick me up. I was humiliated, especially because for the following week, my mother kept reinforcing the idea that I was bound to fail when I tried new things, telling anyone who’d listen, “Dianne doesn’t like to be away from her mother.” In fact, I’d slept over other people’s houses with my sister and without my mother and been perfectly fine. What made this sleepover scarier was not having Chris with me. My mother claims she can’t remember anything positive about what I did or liked as a child, so instead she exaggerates certain details for a laugh. I’ve diagnosed her with Faulty Narrative Syndrome, a condition that makes people distort some stories for so long they can’t remember what really happened. It’s like when you drive down a road that you once got lost on and can’t recollect the wrong way or right way because now they’re both familiar to you. My mother’s humor can be cutting, but she comes by it honestly. The Scotch-Irish side of our family has a caustic wit and a gift for one-liners. Her uncle Norman emceed at various watering holes so often that it’s mentioned in one of our town’s history books. Instead of answering a question with a legitimate answer, she either asks another question or delivers a punch line as if she imagines herself entertaining an audience. When I’ve called to ask about our toddler years, she’s been cagey. Me: Hey. Mom: What? Me: What were me and Chris like when we were little? Mom: Why? Me: Just wonderin’. Mom: You used to ride on your sister’s back and bite her. Me: Like a turtle? Mom: Yeah, like a turtle. Me: Did I bite her, or try ta bite her. Mom: Ya bit her. You were a biter. Are you taping this?

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Me: No. You always tell that one story. Did I bite her all the time? mom: No. (She adds a dramatic pause.) Sometimes ya bit me. She also likes to point out that I was the “most colicky baby who ever lived.” Chris had colic, too, but recovered in half the time, whereas I’m told I cried for a full six months. Once, after hearing her say this for the umpteenth time, I asked, “What was I like when I stopped crying?” Her punch line: “By then I hated you.” In her defense, not knowing how to comfort your infant is brutal for any caregiver. The doctor advised that when I got too loud, she should run the vacuum. I don’t know if that was to soothe me or drown out the sound of my crying. At 26, she had two babies, a husband who worked out of town all week, and though she found support with siblings and friends, they were busy raising their own kids. On top of all that, she and my aunt Barbara tell me I didn’t like to be touched. There are technical terms for this now, like “tactile defensiveness,” but not then. Through trial and error, my mother learned I had to be held facing out, I didn’t like the motion of a swing, and I didn’t like to be pacified by being cuddled or hugged. That’s how my aunt words it, anyway. My mother says I was “unlovable,” meaning not that I wasn’t worthy of love, but that—especially in contrast to my older sister, who welcomed affection, and to whom my mother was accustomed—I was unable to be “loved” by being held. I couldn’t tolerate the kind of nurturing that was offered. This may have been because I left the hospital at a low birth weight (five pounds), and I assume our issues with bonding started soon thereafter. As I got older, even when I was sick, she insisted I go to school, which was why I had perfect attendance from first to third grades. But in fourth grade I began showing symptoms of what was eventually diagnosed as Lyme disease and my mother kept notes on everything, brought me to specialists, and fought tirelessly to find out what was wrong. During the many nights where I was in too much pain to sleep, she stayed up, too, continuously checking on me and asking how I was. On school days, I stayed with my grandmother and Aunt Ginny who fed me, gave me my medicine, and cared for me. It was over a month before I recovered. When I’ve asked Chris what she remembers about us being kids, our conversations are some variation of the following: 18

Chris: When I was a baby I had fuzzy hair on top of my head. Me: What do you remember about the two of us? Chris: You and me are twins. We were in Mom’s belly together. Me: Oh really, I was with you? Chris: Yes, Sister. But, I’m still older than you. (She pauses.) I used to smoke and fly planes. Me: (laughing) As a baby? At the same time? Chris: I never lie. Though she’s an unreliable witness with a major case of Faulty Narrative Syndrome, I still get a kick out of her inventive version of the past. During summer breaks from grammar school, Chris and I were part of the town’s recreation program. Our mother made sure they offered a group for my sister and other kids with disabilities, and I was placed with them rather than with my typically developing peers. Looking back I don’t recall if that was because I wanted to be with my sister and her peers, whom I knew better, or because our mother wanted us to stay together. I do know that around this time came the expectation that I was to shoulder more adult responsibilities and aid my mother by taking care of my sister on a regular basis. “You were always looking out for Chrissie,” an older cousin told me when I asked what she recalls about us from back then. “She was chatty and silly and you were quiet and sad.” That certainly fits with my memories of my own shyness. I hated when strangers came to our house to visit. I’d either sit on the vacuum, stored in the hall closet, or take shelter to read beneath the cellar stairs. It was a little storage area with a door and a light. It was made of pine and smelled nice. I liked to trail my finger along the amber lines of shiny pitch, sometimes hoping my family would notice me missing and try to find me, sometimes hoping to disappear. It was here I began to discover the kind of stillness that would help render me invisible, as well as the kind of indifference toward others that could make them disappear. I had a tough time with the way my identity in the family was changing. I’d been my mother’s daughter and my sister’s sister, but I was slowly transforming into my mother’s sister and my sister’s parent. Still, my mother retained plenty of control over us both, as would have been clear to anyone who shared a meal with us. While she no longer kept a written log of 19

what we ate, she’d begun, like a sportscaster, to replay our daily intake if we asked for a snack before bed: “Ya already had eggs, hot dogs, chips, ice cream, spaghetti, bread, and salad today. Ya really think you need a snack?” Chris and I had very different body types. Chris was chunkier, so our mother scrutinized what she put in her mouth at home. Wherever else we went, though, Chris circumvented her by requesting treats from others who usually complied. I, on the other hand, was thin, so our mother pushed food at me. I was what they called “picky.” Perhaps this allowed me to have control over one thing in my life. In first grade the only thing I wanted packed for my school lunch was American cheese and yellow mustard on white bread. Each day, it stewed in the coat closet and absorbed the eau de sour-milk cologne of my metal Jets lunch box. (I’d wanted the one with the picture of Davy Jones, whom I dreamed of marrying in our backyard, but the only department store in town had quickly sold out, so I was stuck with a boy’s lunch box.) While I rejected most food, I loved sweets. I learned the various places my father hid chocolate and raided them when no one was paying attention. During meals I often snuck Chris food I didn’t want. When our mom left the room for a minute or turned her back at the sink I immediately leaned over and put food on my sister’s plate while miming zip your lip. It didn’t always work. A few milliseconds later Chris might say, “Thank you, Sister!” prompting our mom, in our little dinner theater, to say, “Why is she saying ‘thank you’?” Or Chris might say, “OK, Sister, I won’t say anything,” which our mother followed with, “What is it you won’t be saying anything about, Christine?” To dissuade us from joining forces, being silly, and causing trouble, our mother always sat between us at the kitchen’s island. I sat on her right and my sister on her left. The separation could only do so much, though, and we found ways to connect and annoy our mother, mostly by copying each other. It started with my sister poking her head around our mom to see what I ate and eat it herself. If I ate broccoli, she ate broccoli. If I swallowed a bite of potato, she swallowed a bite of potato. Once I caught on that Chris was mirroring me, I ate and drank faster and faster until our mom shouted to me, “Stop eating so fast, you’ll choke!” and to Chris, “Stop copying your sister!” But my sister didn’t stop. My coup de grâce was to pretend to pick up my fork but instead grab my 20

milk and start drinking. In her hurry to catch up Chris would either dump her milk on the table or spill it on herself. We both loved this routine, but usually—BOOM—our mother would ball her hands into fists that thrust out to give us each a punch in the arm. I pictured her outstretched arms working like a plus sign, our bodies spelling out the phrase she wrote on the backs of our pictures: C + D. Add us together, and you’d get an integer greater than either of us. But what exactly did we add up to, and what did our togetherness mean for us as individuals? I sometimes longed for an ampersand to connect us instead: C & D. This would have preserved our separate selves, while keeping us close together: Chris and Dianne. Instead, as the years went on, we were altered into another symbol—an obelus, or division sign, ÷ : Chris was the top dot, me the lower, and my mother was often the line between us.

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Chris, performing with Happy Louie & Julia, circa 1975.

Fa(r)ther Our father was only home on the weekends for most of our childhood. He was running kitchens and teaching others to do the same at hotels around the country. My father’s identity was that he was, first and foremost, a chef. He was an artist, food was his medium, and he got himself the vanity license plate to announce it: D-CHEF, for Dynamite Chef. He never finished high school, but after serving in the Navy, he got his GED and studied at the Culinary Institute of America in New Haven. By age 27, he was a shining star and was working as the Executive Chef at the Sonesta Hotel in Hartford. He quickly began to rack up prizes. From 1970 to 1988 he won 25 awards at the Connecticut Chefs Association annual shows; grand prize for classical buffet at the Société Culinaire Philanthropique; the Antonin Carême Gold Medal of the French Republic; and in 1985, Connecticut Chef of the Year. His team won a gold medal at the 1988 International Culinary Competition in Germany, and Cornell University, where he taught part-time, awarded him an honorary degree. My mother once said that he’d thought it would take most of his life to achieve his goals. When he’d accomplished many of them by age 31, he never really figured out how to reorient his ambitions. Becoming a better father or husband certainly wasn’t high on his list. He was more comfortable commanding a kitchen staff who did what they were told on his schedule. As a child, I knew my father loved being a chef, but the extent of his talent wasn’t clear to me until much later. He’d grown up in an area comprised of many Eastern Europeans and was surrounded by a big family of relatives from Poland, including some who’d survived Auschwitz. When he moved to my mother’s hometown, he was an outsider, and often got teased for being Polish. “Dumb Polack” jokes were still pretty common in the 1970s, and I internalized some of those messages in my sense of who both

my father and I were. He played into this stereotype in social situations, but it may have fueled his ambitions to excel and his choice to be away. When he was staying at a hotel or out on the road from Monday to Friday, he’d phone the house around 5 p.m. to check in. When he didn’t, my sister and I would run from room to room singing, “Daddy didn’t call us. Daddy didn’t call us.” He missed holidays, too. My aunt Barbara has an audiotape from Easter when I was five and my uncle Gordon recorded interviews with all the kids. When he asked me where my father was, I answered, “He’s in Georgia. He’s coming back, cep’ I don’t know when.” While he was away, we had free reign of the house, even the cellar, which was otherwise his domain. He’d made a barroom down there and an office, which was really his trophy room for all the culinary competitions he’d won. He decorated his space with a bunch of newspaper articles about himself, photographs of his culinary masterpieces, and framed portraits of people who were absolute strangers to me. One particular article always captured my attention, because it included a photograph of my father holding a five-year-old boy. They’re both wearing matching lederhosen outfits for an Oktoberfest event he’d organized. It was perplexing to me that my father, who showed no affection to his own daughters, was capable of extending it to this unknown boy. There are a few Christmas photos in which my sister and/or I are sitting with him, but he never displayed them. They were housed with a random bunch of others in a desk drawer in the living room. On the weekends my father came home, our household stood on high alert, because he’d start drinking as soon as he woke up. He’d still prepare meals for us, and while that could include the rare filet mignon or shrimp cocktail, he mostly served pork roast, beef stew, or roasted chicken, along with a vegetable and mashed or baked potatoes. Granted, it was the best pork, stew, or chicken ever, but we never acquired a palate for haute cuisine. Though my father could have cooked literally anything, he actually favored hot dogs and Campbell’s baked beans. When Chris and I celebrated our birthdays, which we usually did together, our father would sometimes get one of his baker friends to make us a fancy cake. We’d share it with our relatives, maybe a few friends, but I usually felt a twinge of disappointment, because the frosted letters almost

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always misspelled my name. I’d blow out the candles and wish my father would learn how to spell “Dianne” correctly. When I turned eight, one of my father’s friends, Teddy Jazz, gave me a stuffed animal, a floppy brown dog I named Frumpy. It was an age-appropriate and unsolicited gift and I felt glad because he saw me as the child I still was. I keep Frumpy on a chair in my room; his blue, plastic eyes are in a nearby drawer. I loved him so much I accidentally blinded him through years of clutching. My father wasn’t lying when, like a lot of other fathers, he’d say, “I work all week to put a roof over your head.” But when I was still playing with Barbies and Frumpy, he’d already begun including an addendum for me: “You need to get a job and start supporting this family.” Another favorite was, “Someday, you’re gonna want something and you’re not gonna get it.” I’d think, “Someday? What about now?” He also liked to point to the phone and say, “You end up in jail? You forget this number.” Since the only jail I’d ever seen was on The Andy Griffith Show, which looked pretty good, I’d think to myself, “If I end up in jail, I most certainly will forget this number.” But my internal bravado could only bolster me so much, and sometimes, when he kept berating me, I’d cry. Then my parents would fight about me crying. My mother always stood up for me, and blamed my father, and this provoked him even more, which usually made me cry harder and I’d leave the table and run up to my room. Chris would stand at the bottom of the stairs, and try to convince me to come back. “Come on, Sister, I want you down here, it’s okay . . .” When I didn’t return, she’d get my plate and place it outside my door. I’d wait until I heard the basement door close, knowing it was safe to go back and clear the table with my sister. Chris had amnesty from my father. Like a cathedral somehow untouched among the ruins of a war-torn city, she offered refuge and hope. She bravely defended me and scolded our father on my behalf. It’s not that my father did more with or for my sister; he just didn’t verbally or emotionally abuse her. He didn’t expect much from her either. In my mid-30s, he told me he blamed Chris’s Down syndrome for his drinking. As a child, he explained, he’d often made fun of a girl on his street who had a disability and he believed God had punished him with my sister. This may have helped him make sense of her condition, but it

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strikes me as an easy and narcissistic excuse, a type of magical thinking that his past behaviors had the power to reshape his daughter’s DNA. It’s also inaccurate because his own father was an alcoholic, married to a woman who resented his drinking but didn’t leave him. My father’s drinking made him a stranger to himself, and I was a stranger to him. In our house he subsisted in a state of inebriation that lead to evening rages, blackouts, morning hangovers, and retching in the bathroom. He never acknowledged any of his behaviors and not once did he apologize for them. I escaped in dreams of fame. I decided I’d achieve my recognition by being a singer. During the week, Chris and I raided our parents’ record collection under the bar downstairs and played them on our father’s turntable. Using hairbrush microphones, we’d sing and choreograph dances to music of the 1950s. Our favorite album was Oldies but Goodies, which began with “Little Darlin’” and ended with “The 10 Commandments of Love.” Our most adored song, though, was “I Think I’m Going out of My Head.” Eventually I wanted to practice without my sister because I had loftier aspirations. I found a special singing spot outside, an oak tree between our house and our neighbor’s, where I could rehearse in secret and dodge my mother’s scrutiny. One half of the double trunk had been left to grow while the other had been sawed off to create a little seat that struck me as the perfect spot to perform Dion’s “Lonely Teenager” and its B side, “Little Miss Blue.” Hidden by the surviving bough, I turned my back on our house to face Dottie’s and her husband Neddie’s hand-built fence, and beyond that their driveway, and beyond that a small hill, and beyond that the walk up to their front door. In their house, no one got drunk, or yelled because the glasses weren’t spotless, or broke the television by knocking it off a table in a fit of rage. I loved going over there to visit. Some days Dottie made me French toast and other days Neddie let me sit near him in the other recliner and we’d shell and eat peanuts. Once he played me Doris Day’s Greatest Hits, and “Que Sera, Sera” was immediately added to my repertoire at the tree. I liked learning new songs, but I never sang polkas. They were the domain of my father and his family, who enjoyed going to polka dances. When he became a groupie of Happy Louie, we went even more often. Everyone at these dances seemed happy—not just the band and the audience, but also 26

my sister, my mother, and my father. In those smoke-filled halls, polkas alchemized the alcohol in his blood and transformed him into an animated Jackie Gleason. Since I only knew the angry, drunk-in-our-smoke-filledhome version of him, I’d steer clear. I wasn’t going to give him a chance to sanction my existence because he had an audience. I was only 10 years old, but I knew from experience none of it would last. And it didn’t. In the drawer that holds our family’s haphazard collection of photos, there are two from those dances. My grandmother, Babcia, took them. One is of me looking shell-shocked, partly because I wasn’t used to having my photo taken and partly because the flash had turned my pupils red. My hair is so short I could be mistaken for a boy (and often was). I’m wearing a white shirt and royal blue pants, half-heartedly clutching a white balloon. I look like an imposter, someone pretending to be a kid. The other photo is of my sister in a red and white skirt and vest ensemble sharing the stage with Happy Louie and Julia’s Polka Band. Chris is blowing her golden, plastic trumpet and everyone is clapping. Though I desperately wanted to be a singer, I was still too shy and self-conscious to perform. Looking at Babcia’s snapshot, I remember that night. With longing and pride I watched my sister from underneath the table where I was hiding. The light hit her trumpet and reflected off her face, slightly blinding me. She shone like a star.

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Holy Rollers Before I was told that God had a name or that I should be afraid, we rested our knees on the bottom stair. Our mother flipped the light switch up, squeezed between my sister and me, and we prayed to the round hallway light shining above us. We recited one Our Father and one Hail Mary. Once God was named, I began to cross my eyes to make Him shatter into points like a distant star. By creating God in my image, as isolated and fragmented, it became easier to worship Him. At the end of my first year of kindergarten, the teacher suggested I needed to stay back because she felt I was immature. Truthfully, I don’t know if she was more concerned about immaturity or what I’ve since understood was my fairly well-documented defiant streak. On both my sister’s and my early report cards, our teachers’ comments reveal how much we shared that temperament, thanks to our distinctive combination of nature and nurture. We both “interrupted other students,” were “bossy to other students and teachers,” did “not follow directions,” and did “not like to be told what to do.” One morning during inside recess, I’d asked a boy who was building a wall out of cardboard bricks if I could play with him. When he said no, I kicked his whole structure to the ground. My punishment was to spend the rest of playtime with my head on my desk. I knew I was supposed to feel contrite, but I felt only deep satisfaction. My mother wasn’t going to allow me to be held back. She informed the principal, “Everyone knows that teacher is a drunk who puts Alexander Theotokos in charge so she can hit the sauce.” Alex was my age and lived across the street. I thought his middle name was “Zander.” The next year, it’s no surprise my mother enrolled me at St. Edward, the Catholic school

where my habits of interrupting others and talking during church did not go over well with the nuns and they’d make me sit in the corner or next to them. Boy, did I learn contrition there! I would rather have had my sister’s school experience. She’d spent four years with teachers who praised and encouraged her. She never had to deal with daily injections of Catholic dogma, iconography, and authoritarianism. She had no nuns, no crucifixes displayed of a Savior who died for our sins, no First Friday Masses, no uniforms, no angry priests, and no Stations of the Cross with their cheery captions like: Jesus is condemned to death, Jesus carries His cross, Jesus is nailed to the cross, and Jesus dies on the cross. While at Catholic school, I worried I’d be “called” by God, in a visit from an angel commanding me to marry Jesus like the Sisters had done. I felt that being a nun was one of the few occupations available to young women. Once I saw The Sound of Music, I relaxed a bit because I figured that, like Fraulein Maria, I could have it all: start off as a free-spirited singing nun, live in a beautiful mansion, and never have to go through labor because I’d marry a captain with seven children. When I was seven I asked my mother where babies came from, and she informed me that God made women pregnant. Based on what happened between the Blessed Virgin Mary and the Holy Spirit, I prayed God wouldn’t knock me up before I met my captain. First of all, I was too young, and second, the Nicene Creed taught us that this second baby Jesus would “come again in glory to judge the living and the dead,”* and nobody wants to be the one to give birth to that child! I was terrified, and sometimes certain, I’d be chosen to bear Him—not as a blessing but as a curse. Our local Catholic church, made of stone with high gothic ceilings, has a cross-shaped interior. Hovering in the air before the altar, there used to be a life-sized crucifix with a very bloody Jesus attached—bloody thorns, bloody forehead, bloody palms, bloody side, and bloody feet. True believers do not mess around. Despite this display of grotesqueness, weekly Mass had the same convivial atmosphere as our visits to the CO-OP, our local grocery store. As soon as we arrived in church, Chris and I said “hi” to our aunts, uncles, and cousins. Once we settled into a pew, we’d watch to see * The Nicene Creed, Handbook of Prayers (Charlotte, NC: James Socias: Our Sunday Visitor, 2006). 29

how long it took our uncle Rickie’s head to drop forward for his morning nap. Sometimes there’d be a folk Mass featuring a guitar player instead of an organist. While singing songs about love, our mom pinched my sister and me on the thighs to stop us from making faces at our cousins, waving at people we knew, and asking if it was over yet. My mom and her siblings had been raised occasional Episcopalians, the faith of their maternal grandmother, but soon after she died, their Catholic father and his newly converted wife had four of their five children, ages 11–17, baptized. All four had the same godfather, and, typical in the interconnected circles we belonged to, their father was their godfather’s godfather. Since then, going to church has been central to their identity as a family. My father converted to Roman Catholicism from the Polish Catholic National Church after he and my mother were engaged; when he was home, he attended Mass on Sundays at 7:00 a.m. I don’t remember him saying anything about his beliefs or faith. My mother likes church for the camaraderie, and by 1982, with both her parents dead, she filled their losses with aerobics and religion and started to go to daily Mass when she could. By 1988, when my sister and I were mostly out of the house, she became even more devout and attended retreats, got a spiritual director, began collecting at weekend Mass, and had a set of daily prayers and readings to complete. Five of my boy cousins were also at the Catholic school and I was irritated that they got to be altar boys. By fifth grade I wanted to prove myself and, as a budding feminist, to establish that girls could do anything boys could. Influenced by the folk Masses, I convinced Aly, a short, scrappy female classmate, that we should ask to be altar girls. We became the first in our parish, and perhaps the Church itself, to participate in the service—something that was still against Vatican policy. I suspect our priest only allowed us to be on the altar because it was Lent and there were extra Masses. We weren’t official servers, and we couldn’t distribute the Eucharist, but I was thrilled to do some of the readings and ring the bells. It was mostly about the bells. In sixth grade, though, I took my desire for equality too far. The boys in our class got to go outside during school and help clear snow from the playground, so I told my teacher that “Girls should be able to skip cla—I mean, help—too.” Imagine how popular I was when my female classmates and I, in our flimsy plaid jumpers, were sent to the convent to chip ice 30

off the stairs using spatulas. Imagine the icy stares I got from my angry, freezing, should-be sisters-in-arms who’d never wanted or asked for this kind of egalitarianism. Even with these acts of relative boldness, I was training myself to hang back from my peers at times, to listen and watch from afar. Inspired by Harriet the Spy, which I read in the hospital while getting my adenoids removed, I began to keep a diary. Like Harriet, I used an ordinary notebook, not something fancy with a lock and key. Here’s an excerpt: March 18: Sorry I haven’t written in a while. Chris and me watched Little House. Mary went blind. I hope I don’t go blind but if I do I think I know my house pretty well. March 19: I gotta tell you of my experiment I made up. I took a jar and put a toothpick in. I closed it tight to see if it’ll rise. I’ll report to you each day. March 20: Went to confession and did the Stations. Dad was bombed at dinner. Toothpick didn’t rise. March 21: Toothpick didn’t rise. Chris and me watched Boy in the Plastic Bubble. I hope I don’t end up in a plastic bubble. Aly said damn at recess. I thought she was a nice kid. March 22: I won a contest! I won $5 for 1st prize in poetry. Jane Martin can kiss my rear, and can go to hell [only “hell” is crossed out and replaced with “another town.”]. Forgot to check toothpick. March 23: Toothpick didn’t rise. Got my prize money! I’m proud. My cousin said, “Bet I could beat you next year.” I said, “Go ahead and try.” March 24: Toothpick didn’t rise, but the air turned to vapor and maybe that’s a discovery. Chris and me went to scouts and I earned my First Aid badge. Took a bath. Don’t have rabies for sure. I have no idea what made me imagine that a toothpick could rise, but it probably had to do with the Resurrection of Christ. The summer after fifth grade, Chris and I attended a program staffed by university students. I wasn’t distressed about going because it was in the same town as the ear doctor where we went on a regular basis for our 31

multiple ear infections. It was fun to go to McDonald’s after appointments and our mom would order one small coke and fries for us to share, and three hamburgers. My ears were better now but I wasn’t doing well in math, mostly word problems, and needed help. At summer school, I was encouraged to write more and joined a club that compiled the weekly newspaper that published my first story. Chris attended too, but we only interacted when we were carpooled there and back, and I’m not sure what she did. For me, it was a welcome break from the nuns. Instead of sitting in alphabetical order in rows, we clustered in sections of four connected desks; instead of singing hymns about the Salve Regina, we listened to Stevie Wonder; instead of doing the Stations of the Cross, we did yoga. The only carry over from Catholic school was my tattling on a girl who submitted a poem to the paper that she’d plagiarized from A Child’s Garden of Verses. At the talent show in August, my sister’s class performed the song “You Make Me Feel Like Dancing” while I, for reasons that are still mysterious, recited Walt Whitman’s “O Captain! My Captain!” But O heart! heart! heart! O the bleeding drops of red, Where on the deck my Captain lies, Fallen cold and dead. Dark, formal, and bloody, I’m sure it was a real crowd-pleaser, or at least scared the crap out of the first and second graders. Few of the small handful of girls in my Catholic school class ever bonded, and by sixth grade, I began to want to have a real best friend and a group of my own friends, outside my family. I’m not sure Chris felt that need in the same way. She was so busy with school, Scouts, swimming, Special Olympics, and all the activities our region’s recreation director organized— dances, bowling, day trips, sporting events, and arts & crafts—that she didn’t have a lot of time left to pine for more. My chance to branch out finally came when, after a 20-year closure, our town’s roller rink reopened. The rink was a large, rectangular hall, with polished wooden floors above the offices of the motor speedway. Depending on which generation you were from, the property was known as the track, the fairgrounds, the races, the speedway, or the rink. 32

Mom took Chris and me there each Saturday. We arrived early for skating lessons and then stuck around for free skate. As soon as we walked in, my sister would whine, “Is it time for my chips and soda?” And our mother would answer, “Ya haven’t even put your skates on yet.” I was one of the only pre-teens there with a mother and sibling in tow, and since all the kids knew my mom, who was the assistant to the school nurse in town, I couldn’t pretend to be there alone. She knew them, too, as well as their medical histories. Each week she offered me a health briefing: “Stay away from that chunky boy, Quinn, by the snack bar—sent him home yesterday with lice. And that girl, Dominique, doing the limbo—scabies.” Without being able to cling to friends or cousins who skated, I wasn’t sure at first how to separate myself from my mom and sister, but each week I got better at blending in with the other kids. My need to be more independent was part of normal development, but my occasional embarrassment and fierce protection regarding Christine being “different” complicated that. It’s not that people at the rink outwardly made fun of my sister, but sometimes there was gawking, especially from Teri Pringle. She came from one of those families that wore clothes from Fox’s Department Store in Hartford, not Kmart, and probably ironed their underwear. When Teri stared, I glared at her with as much venom as I could muster. Eventually that forced her to look away. I myself longed to be an incongruous combination of ignored and revered; I wanted to blend in, but also be center stage, not for my association with my mom and sister, but because of my own merits. I’d been taught that God was always watching me, and I feared that, because He could see my embarrassment around my family, He’d punish me. I also knew my mother might yell at me for ignoring her and Chris. Sometimes this happened back home, but even worse were the public shamings, when my mother would loudly announce, “Come on, Christine, let’s leave your sister alone; she’s embarrassed to be with us.” My sister occasionally made it difficult not to be uncomfortable. Getting a boy to like me was starting to be my main objective in life. But whenever I was near some guy watching other skaters or in line at the refreshment stand, Chris reached up and put her arm around his shoulders and said something like, “My sister likes you. Huh, Sister? Yeah, you’re a good-looking guy.” Imagine the word “mortified” in all caps flashing across 33

my forehead like CNN Breaking News. I often observed the kids sitting on benches in cool groups, especially the kids who were “going out.” Sometimes, I’d come around the corner near the bathroom and—jackpot!—happen upon a couple making out. To me, public kissing was an implicitly sanctioned form of pornography. One time I got caught watching, and the boy looked at me and said, “What the hell you staring at, loser?” I was so tempted to reply, “Someone who’s going to Hell for swearing.” But that wouldn’t have helped me be any cooler. Chris and I were normally shielded from any and all things related to physical intimacy, save for soap operas and the time we found naked playing cards in our parents’ bedroom drawer. Our aunt once told me that in their early days together, our parents had been affectionate, but in our childhood, Chris and I never saw them touch. Hence came my voyeuristic tendency to study and learn from strangers “necking.” Though the confused thrill of it sometimes instilled more terror than longing, I knew I’d eventually want a piece of the action, and like a good Scout, I had to be prepared. I felt the worst when the dreaded couples’ skate was announced. As the lights dimmed, I pushed myself as close to the wall as possible until I was almost out of sight. I gazed longingly at all the partners holding hands, including my mother and sister. Even though I’d been diligently avoiding them, when the two passed by, my embarrassment shifted to envy. They’d glide in unison, crossing one foot in front of the other to negotiate the turns. It was the first thing the three of us had learned in skating lessons, and they did it perfectly together.

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Gawk For my parents, learning my sister had Down syndrome in 1969 must have been momentous. I trust they felt a sense of loss for the future they’d assumed she’d have, as well as immense fear that they’d lose her for good, given the doctor’s terrifyingly short projections for Christine’s life expectancy. To me it was more earth-shattering when, just a few months after her diagnosis, we watched the first human landing on the moon. We looked on in awe as Neil Armstrong, dressed in a puffy white suit, walked with near-weightless buoyancy. My family life, as far as I knew, was the same as it had always been. My sister’s so-called “differences,” the traits the outside world used to set her apart, were simply part of who she was. Chris was still Chris, my best competitor and my best friend. I didn’t hear the phrase “Down syndrome” for another three years, when I was seven, and a boy in the neighborhood told me my sister had it. I wondered what it was and when it happened. Perhaps she got it when the two of us were nursing bad haircuts and lying in the wayback of the station wagon while our mom drove to her bowling league. Perhaps the moon was full, and we were following it with our eyes. Maybe we were wearing matching swimsuits and waiting on the pool steps during that long hour after lunch, or we’d just had a fight over the front seat or thrown a punch because the radio station was changed before a favorite song ended. Perhaps the song was by Wings, John Denver, or the Carpenters. I don’t remember if I’d known something was altered in Christine, but whatever it was hadn’t had a name. A name changes things. I knew people had labels to describe them—female, priest, teacher, grandparent, aunt—but they didn’t just have those names, they were those things. Chris and I had been the same before. Now that she was different from me, was I different, too? And who was I without her being her?

I didn’t know which part of my life was a dream. The one the two of us symbiotically shared, or the one I was entering without her simply being my sister, and her being, not just different now, but special. In my subconscious I had a wordless but visceral perception a shift had occurred. Mostly, because the extra words Chris now had to describe her sounded unpleasant in the way some people said them. I thought about others in town with extra names. There was “Wacky” Palasko, who biked around our neighborhood like a nursing home escapee, dressed in her nightgown, straw hat, and slippers. There was Edna Walker, who, because she walked everywhere, no matter how long the distance, became “Walkin’ Edna.” There was “Booksy,” who whispered, “Excuse me” to each book at the library as he moved it because books, he knew, deserved respect. Was my sister like them? A mask I didn’t know Chris possessed had now been removed, or perhaps, put on. It wasn’t only the addition of the words “Down syndrome” to my lexicon that introduced me to a largely undocumented, isolating rite of passage. It was also this: though I was younger, I was taller than her by age three, and later, I began to deviate from her psychologically, cognitively, and intellectually. There was no precise time when I became the clock’s hands, growing into “normal” maturity, while she seemed more like a number on its face that I moved past. I began as the baby, and for a brief time I was still the youngest, and then we were equals, which I loved. And then she was the youngest, and I was the oldest. I worried that what had previously forged into our “us” could not survive. And while I continue to age and develop, in many areas she is one age forever. Chris had no clue she was anything but Chris. She was naturally outgoing and friendly. Maybe this was because of her Down syndrome, or maybe it was just her personality. In the circles we frequented, most everyone seemed to know my sister and pay her a lot of attention. Even when we left town for our grandparents’ cottage, she retained her status because many people we knew owned or rented cottages nearby. When we were in unfamiliar company, reactions to my sister changed and we had to contend with gawkers. It’s hard for me to describe what prompted these stares, both because I don’t want to reinforce the baseless idea that my sister is somehow less-than or other-than, and because most of the time, I didn’t experience them as differences until strangers seemed 36

Dianne + Chris in front of the red house, circa 1973.

sidetracked by them. It was as though I’d been plunged into one of the pairs of pictures in a Highlights magazine, where you circle the parts that don’t match. At the same time, I felt a fierce need to protect Chris. Kids were especially adept at this rubbernecking. They’d point and ask, “What’s wrong with her?” or we’d hear, “Daddy, is that a girl or a boy?” or “Mommy, why does she talk funny?” I felt very conflicted, because I learned that any confrontational reaction I wanted to unleash on her behalf, like yelling at them to stop or sticking my tongue out, would only draw more attention to us. Chris’s voice—deep, flat, and gravelly, as though she was always on the verge of laryngitis—was often hard for strangers to understand. So I’d translate for her, as if she were a visiting dignitary who didn’t have the language. At restaurants, though, our mom would overcompensate, making Chris keep repeating her order until the waitress got it right, or just speaking for Chris, usually disagreeing with my sister’s choices and changing them while she’d still be reciting it. My mother, never one to hide her light under a basket, might as well have been in an improv comedy troupe called “Up Syndrome.” It was her personal act of defiance to own strangers’ stares and say to the world, “If you’re going to look at us, we’ll give you a show.” She spoke loudly, with animation and exaggerated gestures. I didn’t like when she did this; I was unsettled by her impromptu performances. Early on, I learned to adopt at least some of my mother’s steeliness and stare right back at the gawkers, hoping to shame them. Even now, if people stare at my sister and me, my first thought is: “What are you looking at?” But I don’t think Chris has ever been bothered by it. If she catches someone in the act, she’ll just smile and wave. I have no idea what Chris sees when she looks at herself or me, or if she recognizes differences or similarities between us. As we’ve grown older, the disparities that stand out to me most aren’t so much between each other, but between our childhood selves and who we are today. If she happens to be staying with my mom or me I often watch her sleep. I love to kneel beside her bed and stare at her face to fix her in time. She looks so calm and beautiful. I wish I had her petite nose, and not mine, which looks like Mr. Potato Head’s when I smile, so I wistfully touch the tip of hers ever so slightly.

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If this wakes her, she immediately turns to me, grins, and says, “What, Sister?” I say, “Nothing,” and grin back. When I stand to leave, she gives a little wave, and I give a little wave. Time stretches in reverse and we are again those two little girls in the wayback of our mom’s darkened station wagon, singing with the radio, following the moon with our eyes.

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part two “Can You Take Me with You?”

Chris, posing on a fake cow at South of the Border, 1981.

The Lovely Bus When my sister and I were 14 and 15, the Connecticut state agency for individuals with disabilities sponsored a bus trip to Florida. My mother, who said there wasn’t enough money for everyone to go, planned to take my sister and leave me home with my father. I was livid. Not only was my sister getting to go to Disney World, but I was going to be stuck alone with my alcoholic father for a full 10 days. I threw a tantrum. It wasn’t pretty but it was worth it, since my choreographed combination of yelling, crying, and foot stomping somehow convinced my mom I was mature enough to go instead of her. When the day of the trip arrived and it was time to depart, I began to cry. I was scared. Among the strangers boarding the bus were a few people I knew, but most of them had disabilities. I felt at ease around Chris, but I couldn’t figure out who was going to take care of me, or if I was going to be expected to be a helper. As usual, my mom was compassionate and nurturing. “You said you wanted to go. Now get on the bus. You’ll be fine.” Chris had already jumped aboard and barely waved goodbye. When I finally mustered enough courage to join her, I sat at the window and pressed my face up against the glass like a suckerfish, waving and straining for the last possible view of my mother. Our fearless leader on the trip was Jim, who sat at the front of the bus napping or counted heads after each pit stop. He was easygoing and laughed hard. He reminded me of The Skipper from Gilligan’s Island, except we were embarking on a 240-hour, and not a “three-hour tour.” The first day it became clear that with 40 people on a bus some were not going to be the easiest travelling companions. For instance, Basil, an older, avuncular gentleman with a perplexed expression and thinning hair, had a problem with his hearing aid and it randomly pierced the air with

a high-pitched ring. Since he couldn’t hear it, he didn’t know to make it stop. Lenny was about 25. He was big, lumbering, and sweet, but his legs were so long for the seats he’d perpetually kick the one in front of him. And there was the noisy, chatty mother who’d brought her adult daughter with her and left the son/brother with Down syndrome at home. Finally, there were the farters, the chronic throat clearers, and the inappropriate touchers. By the time we rolled into our hotel in Virginia, my anxiety had turned to excitement, because no adults would be dictating what I could or couldn’t do. I still felt it necessary to supervise my sister by reminding her to take a shower but, stretching her own wings, she flatly refused. I let it go. I had my sights set on my own transgressions and wanted her out of my hair. As soon as Chris fell asleep, I found the hotel’s free premium movie channel and watched my first R-rated film: Dressed to Kill. I had no interest in the “who done it” of the mystery plot; I was looking for the gratuitous sex scenes my friends had told me about. But those occurred early on, and the rest of the movie completely freaked me out—especially since Angie Dickinson’s character was killed in an elevator that looked exactly like the one in our hotel. As the tour settled into a nice groove, I gravitated toward the college kids who were chaperoning. I loved that they were older, and cool, and sometimes included me in their sightseeing group. They also let me sit with them on the bus instead of with my sister. I still looked out for Chris, mostly to guard her from the inappropriate touchers. It would’ve killed teenaged me if she got past first base before I did. In some ways, our new freedom brought us closer together. When we stopped at a mega-buffet in the South—written into our itineraries as an attraction, since we didn’t yet have them in the Northeast—we gleefully loaded up our plates with whatever we wanted. Chris piled on the savory— bacon, sausage, hash browns, and a western omelet—and I doubled up on the sweet—French toast, chocolate chip pancakes, cheese danish, and a blueberry muffin. But mealtimes also brought conflict. As a rule, my sister carried around a few tennis balls and a bunch of Popsicle sticks in her pockets. Whenever we sat down to eat, she pulled out the balls and sticks and carefully lined them up on the table. I don’t know what the balls were for since she didn’t play tennis, but the sticks functioned as her smokes. She’d take one off the table, place it in her mouth, 44

pull an invisible lighter from her front pocket, “light” the popsicle stick, and inhale and exhale a few puffs. She’d flick the imaginary ashes into the table’s ashtray. It was eventually extinguished before being returned with the rest of the sticks to her back pocket. Naturally, the balls went in the front. At each meal I tried to convince Chris to put these objects away, but they stayed on the table until she completed her routine. By day five on the bus, I was worried we might eventually experience the Lord of the Flies on wheels. Maybe I was just projecting onto others my feelings of aggravation toward my sister and her idiosyncrasies. When we arrived at Cypress Gardens, she decided to push me further by taking off her shoes, removing her socks, and putting her shoes back on, which was fine, but she didn’t leave them on the bus, she made her grand entrance into the parking lot with one sock draped over each shoulder. No shower, the smoking, the tennis balls, and now this? Not only did she look ridiculous, she’d probably get blisters and complain the rest of the night. We got into a verbal pissing contest. I lost, and the socks won. Chris trailed a few feet behind me the whole day, but I barely said a word to her. She was testing my patience and control as if the trip were an exercise in Zen—not that I would have known what Zen was back then since I’d never even heard of a bagel, let alone Buddhism. Later, at dinner, I only recovered from my sulk-fest because the next morning, we were finally going to Disney World for two whole days. The first day, I was chaperoned by Jim and grouped with my sister, Basil, Lenny, and . . . Holly, a girl around my age with cerebral palsy. She was in a wheelchair, and because I was female, it was my job to take her to the bathroom. I’d wheel her into the stall, hold her up with one arm, and get her pants and underwear down with the other. I’d hoist her onto the toilet, then wipe her, re-dress her, and lift her back into the chair. Holly wasn’t that heavy, but I wasn’t that strong. This was before the 1990 Americans with Disabilities Act mandated that bathrooms be accessible, so our intimate dance was especially awkward. I’d try (unsuccessfully each time) to not have her head hit some part of the stall. I felt horrible. I worried I was hurting Holly or I might drop her. I spent most of the time apologizing, but since she couldn’t speak, she didn’t complain. Though some in our group were tall enough to go on the rides, it didn’t mean they actually wanted to, including my sister. She wasn’t a fan of loud 45

noises or the dark. Therefore, the Disney highlight for the two of us was Mr. Toad’s Wild Ride, which basically jerked the car around and positioned you extremely close to colorful statues of a toad and his entourage. There were no lines because the ride sucked, so we rode it again and again and laughed harder each time. I was excited to cruise the park on my own the next day, using a detailed plan I’d mapped out the night before. I craved attractions that required seatbelts. No more It’s a Small World for me. Riding on Space Mountain was my main goal. At noon, after two rounds of Space Mountain, I sat down to check my map, and saw a girl with a familiar face heading toward me. As she got closer I realized it was my sister in her bathing suit and shorts. This was way before Disney had a water park. Chris was alone, had her shirt flung over her shoulder, and was eating a chocolate-covered frozen banana. I approached her to find out what was going on. She quickly tucked the treat behind her back. Me: Where’d you get that? Chris: I don’t know, I just did. Me: Did you pay for it? Chris: I asked the man for one; it’s mine now. Me: Well, if you wanna keep it, you gotta put your shirt back on. Chris, reluctantly handing me the snack to do so: Fine. Me: Where is everyone? How’d you get lost? Chris: I’m not lost, I’m fine. Me: Just tell me where you lost them. Chris: I went to the bathroom and now they’re gone. Me: Well, I guess we’ll have to go find them. Chris: Nah, Sister, I’ll stay with you. I’m fine. I envisioned Jim, frantically searching for Chris, and the rest of her group stuck waiting in the hot sun. I consulted my map. I checked my schedule. Did I immediately take Chris to the lost and found? No way, because I saw that it was in the opposite direction of The Haunted Mansion, which I desperately wanted to experience. Jim and the others could wait, I told myself. What’s another 45 minutes going to matter since they don’t like the rides anyway? 46

I made Chris follow me and sat her on a nearby bench. Already knowing how she’d respond, because she hates to be scared and hates the dark, I asked, “Do you want to go on the dark and scary ride with all the ghosts?” She shook her head to both sides. “Okay then,” I told her, “you can stay here. But if you fucking move from this fucking bench, I will fucking kill you.” Chris lifted her head and her eyes widened in surprise and shock; I’d never sworn around her before. And because I was amused by her reaction, I kept at it: “And when I come back, if you’re gone, I will find you and then I will fucking kill you.” I backed away toward the entrance and watched her for as long as I was able. I silently mouthed, “Stay on the bench,” until she was out of sight. Thankfully, since it was lunchtime, the line was on the shorter side. The first part of the attraction took place on an elevator that suddenly went dark and I began to feel scared. I should never have watched Dressed to Kill. Next I was strapped to a chair and wheeled in front of a dilapidated room teeming with ghosts, one of them projected onto the empty seat next to me. I became more and more terrified. I had to get off the ride. I wanted out. I couldn’t stop thinking about Chris and if she’d stayed on the bench. She hadn’t listened to me once the entire trip. Why would she suddenly start? I began to bargain with God: “When I get out, if she’s there, I will let her smoke the Popsicle sticks; I won’t make her take a shower; she can go sockless for days. Just please, please, please, let her be there!” When the ride finally ended, I ran out and around the building and saw Chris sitting exactly where I’d left her. She was chatting with an older couple, the banana was long gone, and a hint of sunburn crept across her nose. I nonchalantly said, “Good, you’re here, now I don’t have to kill you.” But as we walked to find Jim and the others I suddenly didn’t care if anyone thought we were too old, I reached over and grabbed her hand. As her fingers instinctively fit between my own, we swung our arms back and forth until we arrived at the lost and found. When I handed her over to Jim, he told me Chris had entered the bathroom in Frontierland, but exited, ironically, into Adventureland. Before I headed back to my own adventures, I waved goodbye to Chris. She shrugged and put the stick from the chocolate-covered banana with the others in her back pocket. Maybe after dinner, I joked, I could bum one and we’d share a smoke. Instead of answering, she turned and walked away 47

in frustration, knowing I’d once again be free while she’d be stuck spending the rest of the day with people she’d only met a few days before. We both wanted autonomy, and on that trip to Disney World, we each got to experience some version of it, navigating the park, however briefly, on our own terms. What’s more, our parents weren’t around to complicate our relationship. Still, I was dutybound to consider my sister’s needs first, even when we were apart, and that could feel stifling. Sometimes I was irritated, too, because Chris’s disability seemed to liberate her from having to take care of anyone, including herself. But our first taste of independence, however circumscribed, only lasted until we were back under our mother’s roof. When I asked to go to an R-rated movie with my friends, the answer was a resounding, “Absolutely not.” When my sister said she wasn’t going to shower, she was handed a towel and directed to the bathroom. My mother’s words echoed off the door as my sister slammed it, “Oh yes I am the boss of you.”

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Slumber Party Massacre In 1980, mainstreaming students with I/DD (intellectual and/or developmental disabilities)—a practice still used today, and sometimes offered as an alternative to inclusion—was not a widespread practice, and schools weren’t yet mandated to be structured around it. My mom always wanted Chris to have the same opportunities as others, so, following the advice of a local university professor, she insisted that my sister attend our local, public middle school. Chris still went to her primary school four days a week with peers who had I/DD, but on Fridays, she took gym, social studies, science, and vocational training classes at the middle school, becoming one of our town’s first students with I/DD to matriculate. It was also the first time she’d received letter grades for her work, and the system inspired her. She began sneaking into my bedroom hunting for old homework assignments or tests in my desk she could regrade. No matter what mark I’d received, she’d always lower it. By then, I was beginning my sophomore year of high school. I don’t know if my mom timed our education this way on purpose, recognizing I needed my own space (which I did) or guessing that if Chris and I were at the same school I’d be distracted with worry about how others might treat her (which I would have been). But I was grateful nonetheless, especially since my sister continued her habit of telling guys I hardly knew that I liked them. I was already so insecure in that area, I wasn’t confident enough to hold my own. Though my sister was two to four years older than her fellow students at the middle school, she was actually shorter than many, and this allowed her to fit in. The fact that our gregarious mother worked in the school system probably helped Chris be accepted, but Chris’s own openness made it easy for people to connect with her. She was cute, confident, and affectionate,

calling random people “honey.” She had a select posse of favorite friends, mostly kids we’d grown up around—cousins of cousins, friends of cousins, or the younger siblings of my friends—and anointed them with honorific titles. Candie became “my nurse, Candie,” Maureen became “my teacher, Maureen,” and others became “my buddy,” “my doctor,” “my brother,” even “my sister,” which really ticked me off. Chris began hosting slumber parties at our house for her fellow classmates. I experienced these nights as tiresome and irritating, not because she and her buddies stayed up late giggling or making crank calls, but because no one was actually there—my sister just talked to them as if they were. Maybe it was payback for those rare occasions when my friends came over to our house: Chris often knocked on my door begging to be let in, but I kept her out. I wanted to claim my separateness, and I resented that she didn’t want to be with me when we were alone. During most of her waking hours, Chris habitually thought out loud, as if reading off her brain’s teleprompter. Recently, a doctor told us that many people with trisomy 21 are auditory processors, meaning they can’t control their need to think vocally. I wish I’d grown up knowing this. Instead, I practiced tuning my sister out, and though I wished for a mute button, I could usually ignore her thought broadcasting. At bedtime it was harder. Chris and I had separate rooms, but our beds abutted the same wall and her very low, monotone voice cut through the thin divide to reach me. If I knocked on the wall she simply knocked back as if it were a game. No matter how nice or harsh my tone, asking her to be quiet, to please be quiet, to please be quiet now, never worked, and still doesn’t, so I don’t know why I bothered making the requests. She might quiet for a moment, but my interruptions usually just stalled her, and she started her monologue over from the beginning, which was also worse for me. So eventually, I’d give up, put my pillow over my head, and cry in frustration. One night, as I lay awake worrying about a big geometry test the next day, Chris entertained her “guests” with a speech about field hockey. “Hey guys, here we are at my party. We’re having fun now, right? We’re gonna play our game tomorrow and beat them. I got my stick ready and I’m gonna score five goals.” And then she said it again. And then she said it again. 50

And then she said it again. And before she could start a fifth time, I flew out of bed, stood in her doorway, and approached her as calmly as a tired, temperamental teen could. With whispered hostility I begged, “Please, please, please be quiet, Chris. I’m tired and I need to sleep.” “I’m always quiet, Sister. I never say one word.” “Exactly,” I said. “You always say more than one. But really, can you please be quiet? I have a big test tomorrow.” She waved her hand over the floor and said, “We have a big test, too, Sister.” But then she sighed and stopped talking. And I crawled back in my bed. Thirty seconds later, she slowly started up again like a lawnmower that had only been in park. “Hey guys, just ignore her. I’m older than her, right? She’s not the boss of me, right? Plus, tomorrow we’re gonna beat them ’cause I’m gonna score 10 goals.” I was in hell, not just because of the talking, but also because Chris’s boasting about field hockey reminded me that my mother would be going to her game, but had never gone to one of mine when I was on the same team two years earlier. So instead of stewing alone in my room, I decided to beat Chris at her own tactics. Tonight, there were no +, &, or ÷ signs; tonight, Dianne = Chris. I announced, “That’s it; I’m coming in!” And I jumped out of bed and did something that shocks me to this day. Standing in her doorway again, I pointed to the floor: “Who’s sleeping here?” She said, “My nurse, Candie.” And then as she watched me approach Candie and lift my foot, she cried out, “No, not my nurse, Candie!” But I went right ahead and stomped on poor Candie, crushing her. I then turned from Candie’s lifeless body and pointed to another spot on the braided rug. “Who’s sleeping there?” Hesitatingly, Chris answered, “My daughter, Audrey.” Seriously?! Audrey was my friend. But it didn’t matter. I was on the warpath, and I crushed her, too. Chris pleaded with me to stop, but I was nothing if not thorough. I didn’t give up until I’d finally stomped on them all. Each time my foot traveled through the air and hit the floor, my sister gazed at that space and saw something I couldn’t. My fake killing spree didn’t yield the results I’d hoped. Chris kept talking. 51

After returning to bed, I heard her consoling the casualties like a mob boss. “Don’t worry, guys, she’s gonna get it. She is a dead woman! Guess what, Sister, we’re gonna come in there, and we’re gonna kill YOU. Huh, guys?” I tried to out-mafia her. “They’re not real, and if you’re gonna pretend they are, since I’m not allowed to kill you, I pretended to kill them. Next time, you might not be so lucky!” “I dare you, Sister,” she replied. “I mean, we dare you!” Lying in bed, I couldn’t quiet the deep, despairing gargle of her voice coming through the wall. And my guilt wouldn’t allow me to quiet my own inner voice, reminding me, as nuns, priests, and adult family members had for years: You should know better. Not that there were any adults around. As was often the case, our mother was at a Down syndrome-related meeting and our father was working out of town. Chris and I didn’t bother to ask each other for absolution, since that’s not something we did in our family—apologize. Chris continued to make her appeals to her imaginary guests for swift vindication against me. But as she droned on, my shame had me petitioning my personal host of saints and angels, hoping they’d provide some form, visible or otherwise, of comfort and forgiveness. I realized we were both communicating with invisible beings we believed in. The difference? The next day, she seemed to have forgotten the whole thing, but years later my guilt has followed me like a judgmental spirit and a regretful ghost.

52

Looking for the Spotlight By seventh grade, my father had stopped working as a full-time executive chef and became a food salesman, so he was home more. My mother said he told her when we were babies that he’d pay attention to us when we were older. Now that he was a frequent presence in the house, she asked him, “Are they old enough yet?” We weren’t, and the rest of us became more debilitated by his drinking. We always had to be quiet because he’d moved to the cellar like his father had. He had an office, bathroom, TV, fireplace, and barroom down there and slept on the couch every night. Until he got a fridge we were on call to deliver him his beer. We did as we were told. He’d developed into an irate, petty drunk, and we didn’t want to fall victim to his temper. Depending on how much he drank we weren’t sure if he was napping, passed out, or my mother’s favorite phrase, “in a coma.” If we misjudged and hoped he was in full-on coma mode, but he was only napping and got woken up, he’d become enraged and, no matter who was to blame, if I was home, I’d take the hit. He called me names, kicked my cat, threw my shoes and books in the garbage, and if he picked up the basement phone and heard I was on it with my friends, he’d slam the headpiece against the wall until I hung up. He left notes to my mother on the counter where I could read them that said he disowned me. (In his will he actually did disown me.) And if I walked by him sitting at the kitchen island eating a snack, he was red-faced and ready to implode, and he’d look up and his eyes bored through me like he wished he could kill me or I was already dead. Whenever I came home, I’d whisper to my mom, “Where is he?” And if she said, “Downstairs, in a coma,” I could breathe a little more easily and didn’t have to hide in my room. Within the confines of the house, my mother and I called it like it was. Outside the house, though, we treated

Chris + Dianne, performing in the kitchen, circa 1982.

his secret like our own, and protected it. It’s not that people didn’t know he drank, but at work, family functions, and our yearly one-week beach vacation with his family, he learned how to regulate his liquor and be on his best behavior. Once he walked through our front door, alcohol was his book of hours, and he drank like most monks prayed—around the clock. When my mother was out, I was expected to babysit both Chris and my father. Monday nights were the worst because my mom left to go bowling at 6:00 p.m. My father would be in the cellar passed out by this time, snoring with the exaggerated inhale and exhale of a jackhammer. It was my job to be his alarm clock for the 8:00 p.m. football game. He’d be so out of it I’d have to shake him, touching his arm or shoulder with as few fingers as possible. If this weren’t enough, I’d resort to shouting. The shouting was the only part I liked. I could get away with calling him Dick—short for his given name, Richard. “Dick, wake up! You said you wanted to watch the game! Dick, wake up! Dick!” When it took too long I’d push it farther: “Dick, Dick, Dick, Dick, Dick, Dick!” Eventually, he snorted and gasped like he was coming up for air, lurched forward from the recliner, and in a semi-stupor stumbled outside to smoke. I watched from the stairwell to make sure he didn’t drop his cigarette and burn down the house. It was worse when he fell asleep upstairs in the living room because he’d get confused, think the front door was the entry to the bathroom, and piss off the front porch, sometimes in broad daylight. My sister was usually oblivious to all of this, having taken over the family room to watch a sitcom or throwing a one-person song-and-dance party. Once my father was awake, it was time to get her to bed. As long as she didn’t demand another snack or refuse to wear a pajama top, this usually went smoothly. Once both my charges were settled, I could finish my homework, eat a snack, call a friend, or just watch TV and rest. My sister resented when I watched her, but part of me enjoyed being the boss of the house because I could eat what I wanted, watch what I wanted, and stay up late without my mother policing me. To prove to my father I could earn my keep, I also had a 5:30 a.m. paper route in seventh and eighth grades. Once, after he demanded I give him my month’s pay, I slipped $50 under the bathroom door while he was in there. My mother told him to stop being an asshole and, 15 minutes later, slid the money back under my bedroom door. 55

Delivering papers was typically a boy’s job. I didn’t want to be a boy but I wasn’t old enough to babysit. I never really aspired to the “tomboy” label. Being a tomboy would have required a certain amount of industry and gumption, not to mention coordination, which I did not possess. In elementary school, I did wish I could pee standing up, and I wanted boy’s shoes in third grade. But I loved my Barbies, played dress-up with my grandmother’s jewelry and makeup, and railed against my mother for making me wait until after eighth grade graduation to get my ears pierced. She said, “If God wanted holes in your ears, He’d have put them there Himself.” In fifth grade I dared to dab some of my grandmother’s 1960s, robin’s-egg-blue eye shadow onto my lids before school. At recess, when a classmate said, “You have on eye shadow,” I opened my eyes as wide as I could, tried not to blink, and insisted, “No I don’t.” Then I ran to one of the nuns and said I had to use the lavatory, but I secretly needed to get to the sink and wash my eyelids. My mom was less concerned with personal appearance. She was pretty and petite but dressed mostly in hand-me-downs. At home, she preferred the outdoor work that, in other families, fell to men—mowing the lawn, stacking wood, maintaining the pool, and shoveling the driveway of snow— and I was expected to be her sidekick. But I hated to get my nails dirty, and I ditched my Scouting pocketknife when I almost lost an eye carving a heart into a tree. The woman I hoped to someday be was a combination of Laura Ingalls Wilder, Maria from The Sound of Music, and Jo from Little Women, though I never recovered from the fact that Jo married an older guy and not the boy next door. As I aged, even these notably independent women seemed oppressed by constricted gender roles. Edging toward womanhood made me feel conflicted and claustrophobic. In my junior year of high school, not wanting to succumb to the accouterments and behaviors of my gender, I got my hair cut short. When I lost some of the weight I’d gained since middle school, it revealed my curves, and I needed a new way to conceal myself. Many days, having read that the best way to join your enemy was to become your enemy, which is a common behavioral choice in situations of colonization, I’d dress in my father’s clothes. My father didn’t like this, and the few times he caught me, he got angry. I didn’t care, and besides, I didn’t have enough money to change my ward56

robe. When he’d fall asleep on the couch, I’d carefully open his closet and borrow what I wanted. My favorite outfit was his red-striped, short-sleeved, button-down oxford, a gray oversized vest my mother had knit, and some old jeans I’d roll up to showcase my white, Converse All Star high-tops. I looked like I was in constant rehearsals as a male extra in the musical Grease. I’d occasionally top it off with a hint of girlishness by adding a pink ribbon to my hair and wearing a single shell earring I’d made myself. This was in the early ’80s. Though I may have looked peculiar in my town, which was 10 years behind the times on a good day, the MTV trends I followed were current. Madonna, Flashdance, Cyndi Lauper, and Boy George were influencing those of us in the drama club in my school of 400 students. Drama club had become a kind of substitute family for me, or at least a respite from my own. I’d been attracted to performing for years, from my secret concerts in the yard to my role as Lucy, from the “Peanuts” comic strip, in the second-grade school play. I admired Lucy’s grit and outright bossiness, traits that helped me cope with my own anxiety, and was proud I’d nailed the part. When I left the nuns for public school in seventh grade, I worried about fitting in, but my rigorous Catholic education, along with my ability to play a character, helped me out. I began to pass notes, talk in class, and mouth back, especially to male teachers. I started to say “damn,” which was a gateway swear that led to harder curses like “shit” and “bitch.” By the end of the year I’d worked my way up to saying the F-word, the equivalent of coke in the 1980 landscape of obscenities. But it was the drama club that propelled me into what our town called “the clique”—we were actually popular. I started going to the skating rink with them instead of my family, and I set my sights on starring in the high school musical. When I saw the lead actors in town, they seemed famous to me, and I wanted that same recognition. Theater helped me get away from myself and become someone else. By attaining more challenging parts every year, it changed my sense of who I could be and what I was capable of. Even if my family didn’t value me, I could find a spotlight. My favorite role was the show-stealing Mae Peterson in Bye Bye Birdie. I mostly liked the positive response I got from the audience and the compliments from people around town after the show. Another standout was performing in a play for children that required 57

audience participation, because I got to pull my sister onstage from the house and she actually listened when I gave instructions! Chris and I had other escape routes too; chief among them was visiting the house of Dina, one of my closest friends. We’d met at Girl Scout camp in sixth grade, where on an illustriously named “Jour des Champs,” or day of champions, we won a prize for being the first team to create a fire large enough to burn through a taut piece of twine. We joked about it for years: if that didn’t make someone a champion, what did? Dina’s house was very different from ours. Along with a guinea pig, a dog, and a couple of cats, Dina had three siblings, and each of them usually had a stray friend around, so the house was always full of kids. It was chaotic and fun, the adults didn’t yell, and we had the run of the place and were free to be ourselves. When Chris and I would arrive at Dina’s in the evening, I always informed her family, especially her dad, that no matter what my sister said, she’d already eaten dinner and didn’t need to eat again. Then I’d leave her in their care. Upstairs, Dina and I lounged on her lime green shag rug, listening to albums and making tapes, singing “Bohemian Rhapsody” or “Squeeze Box.” We fought over who was better, Paul McCartney or Roger Daltrey (as if Roger could ever beat Paul, dream on!). When I’d venture downstairs to check on Chris, of course she’d be sitting there with a plate of food in front of her and I’d say, “You already had dinner.” Smiling, Chris would respond, “It’s just a little snack, Sister.” Dina’s dad would break into a playful smirk and feign sternness, saying to me, “Mind your own damn business and go back upstairs where you belong, Crazy Horse,” using his nickname for me. Then he’d turn to my sister. “I’m in charge here. Don’t worry about her.” Relieved to cede control, I’d rush back upstairs. At some point, Dina and I were interrupted by music being cranked up in the room below and we knew the wild rumpus had begun. We tiptoed downstairs to spy on the kids in the makeshift, darkened disco room her younger siblings had set up so they could dance to cassette tapes beneath a strobe light whose intoxicating flashes compelled them to ecstasy. My sister taught them her best dance moves, including her signature effort of squatting to the floor, touching it with one hand for balance, and kicking her foot out like a Russian folk dancer. We softly closed the door and went to the kitchen for milk and homemade cookies, eventually settling 58

down in the family room to watch whatever we could find on TV. During commercial breaks we’d visit Dina’s mom in the basement, where she’d be smoking and sewing. Always on the hunt for sweets, we’d raid her hidden candy supply. I had a big crush on Dina’s older brother during my freshman year of high school, so if he was home, skulking by or peeking in on us, his presence initiated a game of freeze tag. I’d become motionless and speechless. Dina’s dad kept finding opportunities to interrupt and tease us until we shooed him away. Sometimes he’d shout from the kitchen, “Hey, Crazy Horse, want something to eat?” Like my sister, I always said yes.

59

Chris, competing in gymnastics at the Special Olympics held at the University of Connecticut, circa 1988.

“Well, Ya Flunked” When my friends in junior high and high school would invite me for a weekend sleepover, I was eager to go. Separation anxiety was no longer an issue, and being out of my house was essential to my self-preservation. I’d speed through my chores so my mother would be sure to let me go. I was lucky she did, because her father never let her stay overnight at her friends’ when she was young. My friends and I stayed up late watching Fridays or Saturday Night Live, pining over boys we liked, gossiping about our classmates, singing, and laughing until we cried. But I also took time to visit with everyone’s mom. I’d been trained to be polite and offer to help with meals, and besides, I felt welcomed in other households. I didn’t have to tiptoe around my father like an intruder. I wasn’t responsible for other people. And I rarely thought about Chris. By then, my sister was busy with her own activities. She bowled, swam, attended dances and school events, and prepared for the Special Olympics, then held twice a year. She’d occasionally compete in track and field, but swimming was her strongest sport, and she racked up the medals. Chris and I were taught to swim at an early age by our mother and our next-door neighbor. We put those skills to use at the shore near our grandparents’ cottage, and later, in our backyard pool where we made up synchronized routines. We both enjoyed swimming, but only Chris practiced it as a sport. I was never as athletically inclined as Chris. My crowning achievement was being named Camp Champ in archery in fifth grade, which merited a white rabbit’s foot keychain. I failed to make it onto the basketball team in seventh grade and lasted only one season as a cheerleader. Coming up with catchy cheers interested me more than improving my moves, and my attempts to jump, cartwheel, or do the splits were doomed to fail. Earning a spot on the field hockey team the next year was only somewhat surprising,

because the school had just begun to offer the sport and was desperate for players. We never won a game, and we only scored a single goal the entire season. I was often benched for fighting with the refs. Apparently, sports have rules. When I wasn’t on the field, my role was to rally the team; I was their mascot without the costume. At the end of the season the coach awarded me “Most Improved” and “Team Riot Leader.” It seemed a fitting way to end my career in sports. Though my mother never attended my field hockey games, she went to all of my sister’s when Chris was on the same team a few years later. When I recently asked her about it, she said she had no recollection of me even playing. (We were off to a very bad start.) Then she backpedaled and said she only went to see my sister because of her disability (not helping and not true). Finally, she added, “Besides, you weren’t very good anyway.” (She was right, I wasn’t, but neither was my sister, and is that the only reason parents support their kids?) I reminded her of the fact that she’d also attended ALL of my sister’s Special Olympics events, most of my various cousins’ games, dance recitals, and gymnastic meets. She was quiet. I told her, “I want you to say, ‘I’m sorry for not going to any of your games, Dianne.’ ” She mumbled “Sorry,” with an eye roll and added, “but I always went to your concerts and plays.” I said, “Not good enough; say the whole sentence.” But as soon as she started to speak, we both laughed, knowing damn well that no matter how badly I wanted to script her lines, she wasn’t the least bit sorry. Besides, I, too, spent time attending Chris’s sporting events. The regional and state Special Olympics games were a big part of our lives. I’ve attended as both a spectator and volunteer for as long as I can remember. The Special Olympics assigns each participant a volunteer buddy, and when I was 11, I was paired with a boy a year or two older than I was. He was almost completely nonverbal, and my job was to pull him to shot-putting contests in a red Radio Flyer wagon with wooden extenders on the side. Sometimes he’d pinch my legs and guffaw at my pain. My stern looks, yelps, or frustrated reprimands only increased his frequency and enjoyment, and though I can’t recall how he did in the event, I know I worked up quite a sweat carting him around. Whenever Chris competed, my mom or I—and often both of us—were there, cheering her on. I especially like watching Chris swim. Out there in 62

the water, at a distance where I can really observe her, she’s strong, focused, and immersed in the task at hand. It makes me feel proud and a little teary. Even my mother can be moved to half-laugh and half-choke, which is her repressed, Scotch-Irish version of crying. And from a young age, Chris was good. At 14, she was asked to represent Northeast Connecticut in the 1979 International Games in Brockport, NY. Instead of being paired with a typical college student buddy, they brought out the big guns and Chris got TV actress Susan St. James of McMillan & Wife. Chris didn’t realize that this was like an upgrade from coach to first class until she started watching St. James a few years later in Kate & Allie. In 1985, Chris was named “Athlete of the Year” for our region. She went to the state capitol, received a medal, was recognized by the governor, and got her picture in the paper. One year, when Chris and I were adults, Dina and I watched her compete in gymnastics at the University of Connecticut. As the competitors lined up, Chris was clowning around with them, her underwear slightly peeking from her leotard. When her turn came, she stomped to the center of the mat. The music swelled from the loudspeakers, and she was completely transformed. Instead of maintaining her usual stance as a tough athlete, she was earnest and graceful. She executed a few somersaults and dance moves and ended perfectly, with her arms stretched out and her head tilted upwards. After watching Chris compete, my mom and I would track her down to debrief. For my mother, this meant fussing over Chris in the businesslike manner of a personal assistant: “Did you brush your teeth? Remember, only one hamburg for lunch. Where are your earplugs?” I employed gentler tactics. “Are you having fun? Let me see your medal.” Chris almost always got a gold or silver, but if she got a bronze or, God forbid, a ribbon, my mom or I might also say, “That’s it? What happened?” Chris was on the same page, raising her fists in defiance and declaring, “I’ll get them next time. I’m gonna beat them and get that gold medal!” She comes by this assertive streak naturally. My mother was witness to her father’s political life and, growing up with four siblings, had to fight for attention. As a chef, my father relished competitions, hence all those awards. Some families celebrated their children’s mere participation in the Special Olympics, whose motto, after all, is “Let me win. But if I cannot win, let me be brave in the attempt.” It’s a nice idea: everyone gets rewarded for trying their best, not for how they finished. But it’s not true for my 63

family. Even casual games at home with my mother and sister—cards, bingo—become blood sports for us. You play by the rules, and you play to win. If Chris does a mediocre job with anything, she says to our mom, “Well, I tried,” and my mom’s response is, “Well, ya flunked.” I recently came across a magazine called Special Miracle, which is “dedicated to promoting the support, love, and respect for all individuals with Down syndrome.” On an afternoon I knew my mom would be with my sister, I called and asked, “Is the special miracle there?” “Who?” asked my mother, laughing. I heard her ask Chris, “Hey, are you a special miracle?” “No,” Chris answered. “Can we go to the store now?” My sister had no idea what we were referring to, but my mom and I were tickled by the contradictory logic of “Look, my kid’s a special miracle, but please treat her like everyone else.” In 2012, the staff at Chris’s apartment didn’t feel like taking her to the Special Olympics and skipped both days, so the next year, I brought her myself. The opening ceremonies included an endless bagpipe overture and a belabored blessing from clergy. Bored, Chris and I made faces at each other. My sister swam three times that day. She’d lost much of her hearing over the years, and when she came in last during a race because she couldn’t hear her coach telling her she had to touch the pool wall, I was furious. Chris had been ahead and I wanted her to have special treatment so she could get a medal. When the event ended, I marched up to the woman in charge and told her someone needed to come up with a way to communicate with people who are hearing-impaired. I returned to my seat to wait for my sister’s final event. In the interim was a meet where one girl was afraid to swim. When the race started, she wouldn’t go in the water. Finally, the coach jumped in and swam a little, hoping to encourage the athlete to do the same. It worked. As she stretched out her arms and began to move through the water, the onlookers clapped and cried. That’s how it goes at the Special Olympics: the people who come in last often get more applause than those who win the race. I’m totally with them and it’s a beautiful feeling, but it’s not for my family. Quite possibly the one and only thing that binds us, and that we support in each other, is our belief that it’s always best to come in first, and—miracle or not—to be special. 64

To: Dick; From: Santa Near the end of my junior year of high school, around the time I had my first real date, to the prom, I started experiencing what I called “the bubble.” It was as if my body had both expanded beyond its borders and become encased in an invisible shield, and I traveled through my surroundings at a slow, watery remove. At the same time, my mind zoomed ahead of me on jet skis. I hated being possessed by this feeling, and once these disturbances overcame me, I was never too far from their reach. It had to do with the coming transition to senior year and eventually college. I was taking the SATs, looking at schools, and being asked what I wanted to do with the rest of my life, but my friends were my life. I was usually with one of them, and because I didn’t have access to a car, I’d go to the end of my driveway and wait to be chauffeured away. Under the streetlight I’d sing “Over the Rainbow” 20 yards from the tree where I used to rehearse “Little Miss Blue.” I was worried leaving home meant the end of the happiness and affiliations I’d worked so hard to develop. I didn’t feel prepared for a new direction and independence, even though my home life wasn’t exactly rosy. My mother was a stable presence, but she felt she had to throw so much of her energy into learning the best ways to support Chris and plan for her future that there wasn’t much left for me. This, combined with my father’s refrains about how worthless and lazy I was, didn’t equip me for the unknown that loomed ahead, and I was overwhelmed by option paralysis. If my father was a drunken Captain Hook, I’d developed Peter Pan Syndrome in response. I ate less and slept less. I worried that the fog might never lift. Sometimes I experienced reprieves when I was able to establish a routine, but at other times, mostly before I had to perform, or go on trips, the haze turned into full-on panic attacks. I was comfortable staying at my friends’ houses, but

school trips to D.C., Philadelphia, and Quebec were daunting because, even though I’d have a great time, when I’d get panicky and nauseous I was too ashamed to talk about it with my friends, which worsened my feelings of alienation. What were my panic attacks like? Imagine it’s midnight. You’re alone in the house and you hear someone trying to break in. Your adrenaline kicks into overdrive. You try to figure out what to do, but time feels both sharp and muddy. Your heart is racing, you start to sweat, your breathing quickens, you shake, and you feel like you’re going to throw up. Then you realize it was just the cat trying to get in, but now you’re so wired, you can’t go back to sleep. You’re safe, but your fight or flight system still thinks you’re under attack. Now imagine going through that as a teenager in 1983, sometimes on a daily basis, sometimes in the middle of the night, with no Internet, no Netflix, no computer games to distract me. There was nothing to pacify me but the occasional shot of NyQuil, playing solitaire with real cards, or doing the Rosary. I felt completely alone. After about eight months of this intermittent disorientation, and now a senior, I stumbled into the holiday season expecting my parents to play the same roles they always did. My mom, an otherwise year-round curmudgeon, loves Christmas. The day after Thanksgiving she hauls out the decorations, both secular and religious, and takes very seriously that “Jesus is the reason for the season.” She won’t even display the babies in their many mangers (yes, I meant to pluralize that) until the morning our Savior is “born.” Most years, I’d have paid the Grinch to steal Christmas. It’s not that my house wasn’t filled with childlike wonder—it was. My father acted like a child and I wondered why. Each year he purchased hundreds of dollars’ worth of gifts for himself. My mother says he wanted to make sure he got what he wanted, but it’s hard not to see it as a reminder he didn’t need us, and what we got him wasn’t enough—that we weren’t enough. Initially, she’d wrap his purchases for him, but when she finally refused, he did it himself. “To: Dick; From: Santa,” the labels would say, or just “To: Dick; From: Dick.” Christmas morning we’d watch him feign surprise with the same, predictable jokes as he opened these gifts: “Oh look, a pair of slippers!” “Wow, I always wanted an electric knife!” “A brand new stereo, I shouldn’t have.” 66

Dianne eating, Dick dressed as Santa, and Chris crying, circa 1969.

My father, like the rest of us, could be very theatrical and funny, relishing his role as the center of attention, and the first few years he performed this act, it was somewhat amusing. His show lost its appeal soon enough, though, thanks to his long-established encore. Though it was only 7:00 a.m., he’d grandly swirl a snifter of cognac and drink it down. He spent the rest of Christmas following that first drink with more. After all, it was a holiday and what better way to celebrate the birth of our Lord than through a long series of unspoken toasts. Each year Chris’s ritual was to divulge the secret of what she bought me: “I’m not gonna tell you, Sister, I got you gloves for Christmas.” When Chris and I were older, my father sometimes slid us each a 50-dollar bill, which I appreciated, but he never bothered shopping for us. That was up to my mother. Chris and I did buy presents for him, but he didn’t use them. My mother would often find last year’s gifts for him stashed in the basement, and pull them out for the following year to rewrap and put under the tree. He never even noticed they were the same. But the Christmas of my senior year I received a truly unexpected surprise. For the first time ever my father picked out and purchased some presents just for me. Of the four I received, I remember two: a Walkman and an orange book bag. I still have it. I will probably never throw it away. When I went to his barroom later to thank him again, we had our first “big” talk related to my fears about going to school and my sense that he didn’t care about me. He said, “I get down on my knees and pray for you every night.” Because my prayers were always about having a boyfriend I said, “It’s not working.” This was followed by our first and only awkward half-hug where he said, “You know I love you, right?” But I didn’t know because he’d never said that before. It was like spotting a blimp floating between the trees above your house, an intriguing, but in no way life-altering, piece of advertising. I felt temporarily touched by his thoughtfulness, but I couldn’t trust him. It was one of only a handful of occasions when he seemed to try to see me. Once he slipped me five bucks for a good report card. Another time, he gave me a 10 for helping stack wood, which we did a lot. And when we’d find ourselves on the front porch together watching thunderstorms, he sometimes asked me what I wanted to do with my life. “Pick one thing you love to do and just do that,” he’d tell me. Good advice, and I should 68

have listened. But because he was intoxicated, he never remembered my answers, so after a few such repeated conversations, I’d watch the storms from the back sunroom instead. You’d think, more than anything, I’d want my freedom from him. Oh, how I did! But I wasn’t sure I’d know what to do with my autonomy when I got it. And it was that awful wanting of what I wasn’t ready for that was fucking me up even further. I’d internalized my father’s spiteful allegations. After all, they’d been coming since I was young enough to believe that a chunky man in a red suit was pulled across the world by eight reindeer delivering presents under the trees of millions and millions of other boys and girls, including me. Sometimes I visualize how our family might’ve appeared, Christmas mornings, to some neighbor who happened to look through the picture window into our living room. The fireplace would’ve been blazing, the tree from a nearby farm hung with lights, and four people would be holding gifts, and sharing time, together. It’s sad my own memories didn’t exist at that level of remove. I recall the year some older cousins told me there was never a Santa Claus and how shocking that was. But now I realize the missed opportunity in their significant revelation: that if St. Nicholas hadn’t been putting the presents under our tree when I was young, my parents—or at least my mother—had been. And I wished, that instead of ever being told to believe in some fictional man from the North Pole, I was aware that for 10 Christmases at least, it was my own mom and dad I could have believed in.

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Dianne and her cousin Michael Frassinelli, as Jesus, performing in Godspell, 1985.

“Can You Take Me with You?” This is a letter my sister sent me my first semester at college: Dear Dianne, I am a college girl and you are an April fool! Please come home when you are ready. I love you. I will be nice on the bus and no fighting with Tina. Clean your room, Dianne, and go to bed early. I love you. I hope you find my trivia cards. I watched The Wizard of Oz and did not like the witch. Come back soon. Love, Captain Chris At the bottom, my mother added a note of her own. “Princess just had another beer. Time to kill her.” I can visualize them together at the dining room table, interrupting one another as they composed it in a kind of fractious symbiosis, with Chris writing the words my mom was never able to put in her own weekly letters. Mother: Say, “Clean your room, Dianne, and go to bed early.” Chris: Alright, Queenie. I get my snack after this, right? Mother: Now write, “I love you,” and, “Come back soon.” From what I’d seen in the movies, going to college meant never again living under the same roof with your family. Before I’d left for my first semester, I assembled a photo album to take with me. As I looked through pictures in which Chris and I, up until we were about 11 and 12, were dressed the same, I felt an emotional charge. This would mark the first time we’d be apart. For now, I thought, I’d only be responsible for myself, and I wondered if I’d miss her. I certainly wouldn’t miss my father, who, besides paying the household

expenses, had unequivocally refused for years to pay for anything related to school, clothing, or trips for me, including my undergraduate program. “Girls don’t go to college” was his mantra for years. Thankfully, I’d been saving my money, and tuition in 1984 was still low enough that my mother, who now worked a full-time job and had inherited a little money from my great-uncle Bob, could help me pay for it. As far as my anxiety, my uncle Gordon called some bigwig at the university to make sure I’d be housed in the same dorm as three of my first cousins. My mother and sister accompanied me from our home to New Haven, a little over an hour away, and we parked outside my new living quarters at Southern Connecticut State University. We unloaded the car, packed my belongings onto the elevator, and toted them to my room on the fifth floor. I arrived before my two roommates, so I took the single near the window and left them with the bunks. My mother helped me make my bed, but I wanted to do the rest of my unpacking myself, so after a quick tour of the dorm, we said goodbye. As they drove away I felt like crying, but couldn’t. So I went to the bathroom, thinking some privacy would open the floodgates. After 10 minutes of waiting, I gave up. The public stoicism I’d maintained for so long was not going to be miraculously undone in a toilet stall. I was also worried about triggering a panic attack, and some part of me was determined not to let that happen, because I was not going to fail, and I was not going to go home. So, I flushed the unused toilet to seem legit, and bravely walked outside to see if any of my cousins had arrived. That first weekend I compelled myself to stay on campus. When I went home the following one, my mother made my favorite chicken dinner and bought me Oreos—a very rare treat since they were fattening and expensive. She had also set aside a stack of random newspaper articles she wanted us to look through together about town happenings. She shared notes about what she’d heard regarding my classmates, or which underclassman had asked for me. I was touched by how much she’d prepared for my short homecoming, and I knew she missed me. But I was also baffled. It felt foreign for her to do so much for me. My absence appeared to make me more visible to her as my own person, someone separate from her and my sister. I didn’t go home frequently, and when I did, I often chose to stay with 72

friends at the University of Connecticut one of the nights instead of with my family. This meant I didn’t see Chris or Mom much, so they continued to write. Sometimes my mom sent a newspaper clipping or a few lines that ended with, “It’s not much, but it’s mail.” She’d still update me on town news and gossip and also family drama: Chris got in trouble for fighting on the bus, and was still stealing my father’s beer. My father continued to drink, and since he didn’t have me to blame for anything, it was harder on my mother. I’d once read some of my father’s letters from his own mother when he was in the navy, which included similar updates about whether his own alcoholic father was on or off the wagon. Evidently it was a family tradition. At college, the friends I made were mine and mine alone. I didn’t have to feel guilty for not wanting to share them with Chris, and my mom didn’t have access to them like she had in high school, when her office was in that building and she dwelled in my orbit throughout the week. My friends loved her and we’d hide out on the cots to study for tests. It wasn’t like my mom was cramping my style, since my friends already called me Miss Morals. We were a group of six, and paired up to share lockers so we’d all be in the same hallway. Apparently, some called us the “84 Screamers,” and after we graduated I heard that hallway was much quieter. All of us were very involved in school activities—student council, sports, drama, music, National Honor Society, homecoming court—and weren’t great at keeping secrets about the others. Quite a few conversations began, “Don’t tell so and so I told you, but she told me that . . .” We were competitive shit-talkers, united by juvenile humor and a flair for theatrics, but we were also fiercely loyal to one another if anyone bothered one of us. Yet in college, I sometimes found myself relishing my distance from that group, because for the first time in my life, I was able to convey some of the pain I’d experienced growing up with an alcoholic father. My new friends were among the most accepting, compassionate, supportive people I’d ever met. They talked frankly about their own families’ struggles, their parents’ drinking, affairs, and divorces, and about their own insecurities and fears. They were funny, but also kind. They listened to all of my stories, not just my jokes, though I’d still crack one-liners that could be pretty revealing. “My father would have been too drunk to even know if I was drinking.” I didn’t drink, and aside from a clove cigarette phase in high school, I 73

didn’t smoke or do drugs of any kind. But many of the girls on my floor listened to The Dead, “hooked up” with random guys, had fake IDs, drank a lot, and smoked pot daily. I wasn’t friends with anyone in high school who smoked anything on a regular basis. I was too terrified to try. I’d been a precocious reader and my fear came from my exposure to stories about teens losing it—Go Ask Alice, Ritchie—and I had watched my share of ABC Afterschool Specials. In catechism and high school, we’d been shown some badly produced “scared straight” videos about how marijuana could be laced with PCP and you could die from a single hit. All of these cautionary tales had a tremendous impact on my psyche. I was certain I’d be the unlucky teen to get the batch of pot with PCP in it. I’d end up tearing out my hair, running into traffic, or jumping from a window ledge. And since I could get close enough to this state on my own, I said no to drugs. (Thinking back, I should have said yes to at least one—Valium.) On another level, I didn’t know if I might be genetically predisposed to becoming an alcoholic like my father and felt it was better not to find out the hard way. My dorm friends didn’t seem to mind. I didn’t judge them for their choices and received the same respect. Chris was home and displeased I’d jumped rank and gone to college before her. She was attending Woodstock Academy, a prep school, 35 minutes to and from our house. The commute was worth it because she was matriculated into some classes with typical students as part of a mainstreaming program. She was excited to visit me whenever she got the chance. She accompanied our parents to Parents’ Weekend, which was brunch and a football game, and the four of us spent more time collectively as a family than we had at any point when we actually lived together, except one epic night playing Monopoly at the dining room table. I was surprised that my father bothered to come. He’d only shown up for two events in my life before: my sister’s and my shared confirmation, and my high school graduation. Maybe he was just there for the football game, but I secretly hoped he’d begun to realize I was gone. Together, we took a tour of the campus, ate in the cafeteria, and went to the game. I brought my camera and took a picture of them on the bleachers. I walked a few rows back and they turned, all three looking up at me and smiling. My father didn’t attend my first college play, Marty, but Chris and my mother did. As a freshman, I was proud to have gotten a decent part as 74

the Italian Aunt Catherine. My dramatic range was incredible: “Put-a an extra ‘A’-a after-a every-a word-a and ‘voilà,’ you’re Italiana.” The show was staged like an old-fashioned television set and the seating was constructed to resemble a studio audience. There was no backstage, and the actors were cued from the house. This breaking of the fourth wall really threw Chris off, causing her to have a harder time than usual keeping quiet during the performance. She sighed heavily, announced she was “bored,” asked to go home, and tried to talk to me—usually at full volume. These situations triggered an awkward punchiness and I felt compelled both to cry and laugh. These two conflicting reactions propped me up, helping me maintain an outward calm of being fine with my sister’s idiosyncrasies. If I could demonstrate Christine’s behaviors were acceptable, no one else would feel they had my permission to react negatively. A few friends from home visited me that April, and one of them asked how my sister was doing, because she’d heard Chris was in the hospital for diagnostic tests. No one had told me anything about it. My mother’s letters seemed normal, and though she’d mentioned that Chris had gone to the doctor in one of our weekly phone calls, she hadn’t seemed alarmed. But as soon as my friends left, I called my mother, who confirmed that my sister was in the hospital because she’d developed some mysterious symptoms. That weekend I went to see her, and was shocked by how seriously sick Chris had become. She was pale and weak and much thinner than when I’d last seen her. She had a swollen ankle and a high fever. But since there were other visitors in her room when I arrived, I played it cool. I kept it together by talking to the other guests, asking Chris inane questions about the food, and trying to make her laugh. When that failed I retreated to the bathroom and began to quietly sob. Having Down syndrome was supposed to be enough, her one allotted condition. She’d never had more than a cold and ear infections before. Now I was realizing Chris was in fact mortal, and I was mortal, too. I felt powerless to help her, and guilty for the times I’d pushed her away. I thought of Jonah, who’d escaped and refused God’s call, only to be stranded in the belly of the whale. I, too, had failed in my devotion, turning from my sister and being swallowed up by college, or perhaps, by the torment of seeing Chris in such a bad state. I suddenly understood what it meant 75

when some say three types of darkness covered Jonah: the night, the sea, and the belly. Chris stayed in the hospital for a couple days, and the doctors decided she had arthritis. After she came home, she was still weak and feverish, so my mother took her to UConn Medical Center for a second opinion. The doctors claimed she had rheumatic fever. I had to return to school to finish the semester and, though I wondered why my mother hadn’t told me sooner how severe this was, part of me was grateful. And my mother, rarely willing to admit to any wrongdoing, thought maybe she’d pushed my sister too hard. She always kept Chris on the go, and made her do daily aerobics on a mini-trampoline in the family room and assist her with chores now that I was away. After my sister got out of the hospital, she was allowed to rest. She stretched out on the couch propped up by pillows, sipped water, and watched TV. I sat and talked with her as much as I could, tenderly placing her feet on my lap and my hands on her feet. That summer I lived at home and took a job as a recreation aide for individuals with disabilities. My boss was Jim from the Florida trip and I worked with my mother’s colleagues and my sister’s peers. No longer a brave, New Haven college co-ed, I’d stepped solidly back into my familiar role as daughter, sister, and caretaker. Our neighbor Kathy, who’d been one of my teachers and directors in high school, let me borrow her extra car to get to work. Together we decided that a local production of Godspell would be fun to do that summer. I’d stolen a cassette tape of the musical from some unsuspecting soul in my dorm a few months before, and loved listening to it, so I was eager to try out. I played a few roles, including the Prodigal Son’s brother, who resents all the attention his sibling receives from a parent. Since I’d had years getting into character, I was a natural. I also sang “Day by Day.” Ostensibly, it’s about loving Jesus, but for me, the song’s lyrics, with words like “clearly,” “nearly,” and “dearly,” applied to the new intensity of my feelings for Chris. I felt regretful about the times I kept her on the outskirts of my life in high school, when I’d escape to friends’ houses, telling myself since Chris got our mother’s nurturing and not our father’s abuse, she didn’t need me. I realized I’d displaced my resentment toward my parents onto her. But her

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sudden and mysterious illness had undone me. I just wanted to be there for her, and to help her be herself again. When I got permission for Chris to sit in on a few rehearsals, she was thrilled. She’d recently co-opted my purloined tape and was learning the songs. Back at home, I practiced the choreography around the living room where she was camped out, and we sang my parts together. At all three performances, Chris sat as close to the stage as our mother allowed. By August, Chris still wasn’t improving, and a pediatric heart specialist at Hartford Hospital said she definitely didn’t have rheumatic fever. Then Chris was admitted to Newington Children’s Hospital. When she heard the hospital would be having weekly picnics, she asked our mom if she could live there. Even when she was sick, my sister relished the liberation being away from home gave her, though of course my mom took her out as soon as the doctor okayed it. Where my own individuation was concerned, I still had a long way to go. Back at home, Chris seemed to be slowly recuperating on a new regimen of the anti-inflammatory drug Indocin, only to become allergic to it and be re-admitted to Hartford Hospital. Finally, after several diagnoses, we were informed Chris had a type of arthritis called Still’s disease, which is oxymoronic: dis-ease and still. It was October before Chris fully recovered. Like Down syndrome, Still’s disease was named for an English physician, but to me, though small and unassuming, the word “still” somehow captures the grace that found us that year, and the simple gestures we chose to offer each other in our most difficult and complex moments: STILL, noun: a photographic print. STILL, adj.: abstaining from motion. STILL, verb: to cause someone to become calm, or immobile. STILL, adj.: in spite of everything.

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Dianne + Chris at Disneyland in Anaheim, California, 1986.

Darkness and Heights and Speed, Oh My! My sophomore year of college, I wasn’t brave enough to accept my friends’ invitation to accompany them to Puerto Rico over winter break. So much of my reserve was devoted to being able to live at school, and I worried that pushing myself further might trigger the panic attacks that were always pulsing in my psyche. Instead, I opted to spend 10 days in California with my mother and sister. I was also motivated by my sister’s recent illness and wanted us to be together. We split our time between Ventura and Anaheim. My mother was apprehensive about renting a car, so we depended on hotel vans to shuttle us around. Our trip spanned two Sundays and a holy day of obligation. The drivers didn’t normally take people to Mass, but since my father was a friend of Bob, the general manager, Bob directed his employees to take us to and from church, not once, not twice, but thrice. We’d arrived on New Year’s Eve, but because of the time change, my mom and sister were in bed by 8 p.m. I might not have been adventurous enough to join my friends in Puerto Rico, but I’d be damned if I was going to bed before midnight! So against my mother’s wishes, I put on my dressy blouse and skirt, added my fancy Kmart sandals, and went to the hotel bar where I sat at the counter. When the bartender said, “What can I get you, doll?” I thought, “Doll”? Who says, “doll”? Maybe my mother was right. Maybe I shouldn’t be here. I was still a total teetotaler, so I ordered my old standby, a ginger ale. Not sure how much it cost and afraid to ask, I placed a five on the bar’s shiny surface and avoided everyone around me. My big night consisted of fixing my eyes on the television and sipping my soda until 9:00 p.m. when the ball dropped in Times Square. I was

reluctant to return to the room because I didn’t want my mom to think I couldn’t hack it, so instead I walked outside to sit by the pool and read the book I’d carried with me. But I kept falling asleep mid-sentence. By 10, I finally gave up and went to bed. I was relieved my mom didn’t wake up and mock me. For the next few days, navigating the crowds at Disneyland while following a schedule that meshed with Christine’s daily routine was a challenge. She prefers to have her daily three meals at the same time: 7:00 a.m., noon, and 5:00 p.m. This proved especially hard when we were in a line. My mom and I made it our mission to ensure Chris didn’t know what time it was. Once, as we waited to see It’s a Small World, Chris spied a nearby woman’s digital beige watch the size of a bar of Ivory soap. The huge numbers displayed 12:14 p.m., and Chris started obsessing about obtaining food. We knew she wouldn’t stop until it was in front of her. We had to go. Negotiating which rides we agreed on posed a different set of problems. I don’t like heights, my sister hates the dark, and our mom learned the hard way she didn’t like the speed of roller coasters. Chris and I, however, loved seeing her grip the metal safety bar of the Matterhorn Bobsleds, squeeze her eyes shut, and swear under her breath, “I will never go on another goddamned ride like this again.” Next to her, Chris kept throwing her hands in the air, prodding me in the back, and shouting, “Look at Queenie, Sister! Queenie is scared!” I felt more sympathetic for my mother’s reaction when I accompanied Chris on a ride called Autopia, where she got to try driving a real car on a track. She loved honking the horn and bashing into the car in front of us, but I ended up with mild case of whiplash. My mom and I figured that the three of us could handle The Pirates of the Caribbean, which we imagined as sort of a PG version of It’s a Small World only with ammunition and public drunkenness. As we waited in line we sang the song, “Yo Ho, Yo Ho, a Pirate’s Life for Me,” which was fun for the first 20 minutes, but after that I changed the words in my head to, “Shut the fuck up, I have to take a pee.” As we snaked into the building and sloped down an ever-dimming hallway, we began to worry. Chris had already forced us to leave Snow White’s Castle because the witch upset her. Now she began repeating, “Ummmm. Gettin’ kinda dark in here.” We tried to reassure her with variations of, “No, it’s gonna be fine”—but

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she seemed more and more worried, and our appeasements seemed more and more false. The people around us, who’d already been staring at my sister with looks of pity, were now shooting my mother and me looks of contempt that conveyed, “What are you monsters doing to this poor, innocent, terrified girl?” We ignored them. We’d been waiting almost an hour at this point, and we were going on that ride. When it came time to board the boat, my sister raised her arms in an upward, ministerial position and declared that she was not getting on that boat and didn’t want to see any pirates. We chuckled nervously, our hushed encouragements overlapping: “Get on the boat, you’ll be fine. And after this”—in unison—“lunch!” “You promise?!” Chris said. We promised. Once we settled into our seats, we were jerked forward and pitched down a waterfall into absolute darkness. “It is dark! It is scary!” Chris proclaimed. “It is past 12 o’clock and it is time for my lunch!” Soon she began to cry a bit, moaning like she had a bellyache. We threw our arms around her hoping to soothe her, but as the sound of gunshots rang out around us, my mom and I began to laugh. We tried to hold back but that only made it worse. We knew we had no choice but to finish the ride, alongside our fellow passengers who wanted to arrest us, and that tension brought us to near hysteria. Chris began to scold us, “It’s. Not. Funny. You. Guys.” This only made our waves of laughter swell again. When the ride finally ended, true to form, my sister quickly wiped her eyes, smiled, and said, “Now can I have my lunch?” Then she shook everyone’s hand in the boat saying, “Whew, that was kind of fun, huh guys?” Chris exacted her revenge, but only on me, atop the High Sierra Ferris Wheel at Knott’s Berry Farm the following day. I didn’t mind when it turned in circles, but when we’d get stopped at the top to load or unload others, my sister could tell I was distressed. What tipped her off ? The way I was squeezing the bar with one hand and covering my eyes with the other? Nope, I’d made the foolish mistake of asking her to stop moving the car. And right there I gave Chris the keys to my kingdom—only it wasn’t a magic kingdom, it was a panic kingdom, and she began to intentionally rock the car back and forth. I again asked her to stop, but she just laughed and rocked and rocked and laughed. “Sister doesn’t like the rocking,” she taunted. Pointing to our mom below, she yelled, “Look at Sister now,

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Queenie, Sister is scared.” I couldn’t force her to stop, because that would make the damn car move more, so I just sat there feeling queasy, covering my eyes and wishing those people from the pirate’s ride were standing beneath us so they could witness what my sister was really like. And also, so I could puke on them. The whole trip felt a little infantilizing, especially the next day when I announced my intentions to walk around Disneyland on my own, before rejoining Chris and my mother to watch a parade. Then again, I didn’t conduct myself in the most adult fashion: Me: While you wait, I’m gonna walk around. Mom: I want you to stay with us. Me: Why? Mom: I’m afraid you’ll get lost. Me: Are you kidding? In Disneyland? I’m 20. My friends are in Puerto Rico, prob’ly drunk off their asses. Chris: Queenie, Sister said “asses.” Mom: If you go, she’s gonna wanna go, too. Me: I can’t believe this shit. Chris: Queenie, Sister said “shit.” Me: Shut up, Chris; it’s all your fault. My mom was afraid to lose me in Disneyland? Had she recently seen headlines that read, “Young Woman Kidnapped by Oversized Duck?” It appears that in choosing to go on this trip with my mother and sister instead of Puerto Rico with my friends, I’d confirmed I wasn’t a grown-up. Maybe my mom just wanted to protect Chris from feeling bad that I could go off on my own while Chris couldn’t—or at the very least, to protect herself from having to listen to my sister complain the whole time because I had gone off on my own. Whatever the case, my mom won, and I stayed. To prove how mature I was, I crossed my arms and pouted through the whole stupid, shit-ass parade. The following winter break, I showed them. I went to Florida with Dina. We stayed with her 85-year-old grandmother for a week in St. Petersburg, the retirement capital of the world. She made us watch The Sound of Music several times while we cross-stitched using a kit we’d bought in desperation 82

at a nearby strip mall. For transportation, we relied on the grandmother’s 90-year-old friend, Mr. Zipka, who carted us around repeating the story of his wife Sally’s recent big toe amputation. At night, since I wasn’t ready to go to bed by 8:00 p.m., I’d sometimes sit on the front stoop and read. Dina’s grandmother never learned my name, but one morning, she accusingly confronted me, “Hey you! I know what you do out there at night.” I presume she thought I was smoking, drinking, or doing drugs. I definitely could have used them, but I wasn’t. Still, it gave me a thrill that at least one person thought I was a badass.

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part three Land of the Lost Years

Cain & Dis-Abel-d Halfway through college and unaccustomed to being indebted to other people, including my mother, who was funding my education, I decided to try to secure free room and board as a resident advisor (R.A.). Many of my dorm friends were preparing to change course their junior year, going abroad, transferring, or getting apartments together off campus. At 20, I wasn’t eager to travel on my own or have an apartment in New Haven. An R.A. job seemed like a suitable option, and I was surprised and excited when I earned a coveted position. About a month before the job started, though, the bubble made a comeback. Was I really ready to be separated from my friends and cousins, to babysit drunken undergrads all hours of the day? Based on my family history, that requirement was basically in my wheelhouse. But I’d resented my caretaker role at home, and I soon resented it as an R.A. I hated the new dorm, the added responsibility, and the confinement of having to work where I lived. I felt like I was starting over yet again, and though my phobia of the panic helped me hold things together for a while, I began to unravel. My fellow R.A.s and I were required to share stories of our lives in a mandatory peer counseling class. This was the first time I was expected to speak publicly about what I thought was my secret. I’d never told strangers about my father’s addiction. Though I found comfort in knowing some of my classmates had alcoholic parents, too, I also felt vulnerable, and exposed. Soon I was surrounded by and awash in pain—great avalanches, frost heaves, and nor’easters of pain—and lived in dread of this pain. It took a lot of strength to not get pulled under by it. I barely slept or ate. I lost 3 or 4 pounds a week. I cried just as the cliché predicts: at the drop of a hat. I wanted to quit, but I’d been taught to be perfect, not make waves, and tough it out. I’d never failed at a job before. I met with my peer counsel-

ing teacher to see if he could help. He was Buddhist, and his feel-good insights— like “Pain is inevitable; suffering is optional,” as well as “Suicide is an option”—scared the shit out of me. Many years later, I realized he’d supplied the first sands that would round into a pearl, but at the time, I was in crisis mode. He finally referred me to one of the school’s counselors. I saw him a few times, but he was not, as they say, “a good fit.” In one session he made me stand on a chair to talk about my fear of falling deeper into the fear. In another, he fell asleep. I joined an eight-week therapy program at the hospital. At the intake I was diagnosed with Generalized Anxiety Disorder (GAD) and Situational Depression, now called an Adjustment Disorder. I didn’t care what they called it as long as they didn’t have me committed. I’d rather die from not eating or sleeping than be locked up. I went to individual counseling once a week; I barely remember the therapist or what we discussed. I’d learned in my R.A. training to never say I wanted to harm others or myself, and to never, ever utter the S-word. Once I started talking, I was compelled to divulge my experience with anyone who’d listen. At least once a week, in a state of desperation from the intense shaking and lack of sleep, I’d visit the night nurse at the campus health center and we’d talk for an hour while she knitted. Once I’d calmed down, she’d administer one Benadryl. I’d return to the dorm and pray for sleep. My R.A. responsibilities kept me from going home often. My mother sent encouraging letters that I didn’t believe but appreciated. She also called more so I could talk to her and Chris, and while the residents used the campus pay phones, the dorm director let me use the office phone for privacy. Email, smart phones, and tablets didn’t exist. Even my father stopped by a couple times, but he’d never inform me of his plans, so I never actually saw him. Thankfully, I’d bought a car that summer, which gave me the ability to escape when I wasn’t on duty. I went to church a lot. I’d stopped fretting about being called to the vocation of being a nun; I knew my irreverence and occasional bouts of oppositional defiance wouldn’t be suitable for convent living, let alone for God. But I was still drawn to Catholicism and the deep, familiar comfort it gave me.

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After Mass one morning I went to the rectory to chat with the priest. When he started the conversation by asking me the last time I went to confession, I answered, “Is there anyone else I can talk to?” He sent me next door to the convent. Within seconds of meeting Sister Natalina, I’d poured out my story. She was in her mid-60s, less than five feet tall, and from Italy. When I finished talking, she took me to the kitchen and introduced me to the rest of the sisters, who were from all different countries. They asked me to stay for lunch and basically adopted me. Many nights, we’d have dinner and do novenas in their little chapel. I’d help prepare the meals and set the table, and I’d stick around and we’d dry the dishes and watch the news. I also began volunteering at the Catholic school next to the convent where many of them were teachers. They said Jesus had brought me to the order to become a nun and I wondered if they were right. I’d already changed my major three times. Was this my true calling? At my Catholic school, I’d liked most of the sisters until I got to sixth grade and had Sister Mary Ellen—I was her chosen scapegoat that year. She had my mother come in for a conference because I clicked my pen, gave me what she herself called “the evil eye,” and ordered me to remove my sweater if she thought it was too warm to wear one. I used to keep it on because I was horrified that I’d begun to develop and my hand-me-down bra didn’t fit right. After her, I was done with nuns. But my relationship to those in the New Haven order was different. They were sweet and warm, and I loved them for offering me their home. Depression is a beast. I was possessed. I was not myself. But the sisters, with their endless kindness— along with the night nurse, and my friends—formed a life raft. They kept me from drowning. For a few months, I stayed with the R.A. job, hoping it would improve. I managed to cover desk duty, counsel residents, plan floor events, attend classes, and briefly date a guy I’d liked for over a year. His nickname was “the Bible-study man,” but he broke up with me on Halloween, dressed like Frankenstein’s monster. Even in my altered state, I could see the comedy in this. My other college romances hadn’t worked out too well either. I’d have a great time on the first few dates, but at some point the guy would tell me I was “like a sister,” nickname me “buddy,” “chief,” or “kid,” or tell

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me, “You’re so easy to talk to. I don’t even talk to my girlfriend this much.” They meant it nicely, but the rejections stung, especially when I already felt undesirable. At the end of the semester, I transferred to a state school near my family and moved home. It was a mistake. And it was not a mistake. Mostly, it wasn’t a psychiatric hospital. Back home, I reflected back on my godfather, who’d killed himself when I was four. Suicide used to seem unimaginable to me, but now I wondered if I was closer to understanding what he’d gone through. When I learned that my mother’s grandfather had also killed himself during the stock market crash in 1929, I wondered if there was a genetic component to what was happening inside me. I asked my family a lot of questions, but few people would talk about these events, even those who’d known my godfather well. I was left with my own limited memories of him and the way his death was handled. My godfather was my mother’s first cousin and my father’s best man. He was funny, warm, and full of life. During dinners or birthday parties at our house, I got to sit on his lap because he was my godfather, and since my father was rarely around, I relished the gesture. Once, when my sister and I were four and five years old, we were in the basement and he put Meet the Beatles on the record player. As the music began we excitedly formed a circle and, right on cue when John and Paul harmonize, “I want to hold your hand,” we held hands. My sister was on my left and my godfather on my right, and we danced round and round. It was a rock and roll version of “Ring around the Rosy.” A few months later, on a gorgeous summer afternoon, he went to his bedroom, closed the door, and shot himself. Ashes, ashes, we all fall down. My mother, father, sister, and I escaped to the beach in Rhode Island for a month. We stayed in a gray cottage, not on the ocean, but close. White deck off the back. White porch off the front. I remember my father watching Mister Ed on a black and white TV. He sat on one couch and I silently settled on another. I’d never think to sit on his lap. One night he said he had a surprise. He walked my sister and me down to the shore to show us the full moon making a wide path of shimmering light on the water. The only other memory I have from that August is of my sister chasing 90

me with a live lobster before my father dropped it in the boiling water with the others. In minutes they turned bright red with their own death, and we gathered on the front porch to devour them. When my godfather died, my parents, and other relatives we saw daily, became like the Hebrews and their unmentionable god, refusing to utter his name for years. At first if I dared to ask where he was, I was shushed and glared at. I finally gathered he was just gone, and though I wasn’t sure if it was forever, I knew I wasn’t to speak of it. Grief, named and unnamed, revealed the temporariness of our corporeal selves like a flashlight pressed against a palm reveals a hidden network of veins. When I was told in sixth grade by the neighborhood bully that my godfather had suicided, I finally grasped he wasn’t coming back, and a small part of every good and true thing became history and memory, became an eclipsed moon, which only allowed a faint light to radiate around the mass in front of it. The death of my godfather was the mass in front of it. I also recalled how in my junior year of high school, my mother began to express what I now understand to be her own undiagnosed and untreated depression. One afternoon, while we were on a walk, she said something about wanting to die. It could just have been a bad day, but I was also clueless about depression and didn’t know what signs to look for. But after that I used to worry that I’d come home and find her dead. If I called her name and she didn’t answer right away, I’d fretfully search the house in apprehension. Part of the legacy a suicide pays forward is that once it happens, one assumes it will happen again. I’m sure my mother’s family was thrown off balance by where the ball of depression might fall on the genetic roulette wheel, and for those it landed on, one thing seemed clear: suicide was an option. For me, this was further complicated by the Catholic dogma I was taught, that it was a mortal sin to take your own life. Therefore, I’d go to hell because I couldn’t go to confession and be forgiven because I was already dead. I never shared these worries with anyone, but my mother, who never knew why her cousin suicided or knew what signs she missed, must have feared I might do the same. So did I. But I knew I’d have to work through and confront these urges, because I realized how suicide’s aftershocks impacted my family’s foundation. So after the R.A. job, I subconsciously 91

chose to regress. Though relieved to be in remission, I knew I wasn’t healed. I was hiding. I’d dodged a tsunami, and hoped as time passed I’d gather the strength needed to burst that fucking bubble, once and for all. I reverted to spending a lot of time with my friends and family and slipped into old routines from high school, babysitting and working at a daycare near my new school. Still, I finished my last three semesters of college commuting from home, continued to make the Dean’s List, and earned my B.A. in English. I attended a group for Adult Children of Alcoholics, where, to my surprise, I focused more on my mother than father. I wished she’d done more to protect me from him. What’s more, watching her capably parent my sister, I couldn’t understand why she couldn’t do the same for me. I concluded I was “unlovable” without an official condition, but felt guilty now for having one. I didn’t want to ever add to my mother’s stress, let alone give her something to throw back at me when she’d stage contests about which of us suffered the most. I subjugated my needs. I liked her. I admired her. But to find unconditional love, I’d turned to the nuns. The sisters were more like my own sister. Chris was the heart at the center of our family. But when I returned back home, she’d moved out, and on the weekends she visited, we’d sometimes eat together as a family. She was living near her old school in Woodstock, Connecticut, in a Community Training Home run by her teacher. It was similar to foster care except we knew the family and it was a transitional situation to prepare Chris for a group home. She worked at Linemaster Corp. in Woodstock, which was the “leading provider of foot controls in the WORLD!” There wasn’t any route to follow for me to be with Chris in her new placement. Since she had professional helpers, I figured she didn’t need me. So much of our bond in middle school, high school, and early college depended upon my being my sister’s keeper. Now that I wasn’t required to do this anymore, I didn’t know who we were to each other. By the time she was 25, she’d settled into a group home, where at least one trained caregiver was nearby 24 hours a day. It’s not that I didn’t know everything Chris was doing. My mom gave me diary-like updates all the time. But we only saw each other if I tagged along on my mother’s visits or we were at our relatives’ for holidays. I wish I had sought her company more during our early adult years so we could’ve figured out how to be together in the new ways we were changing while apart. 92

Chris could tolerate the light within herself, carry it, and let it shine. I could barely tend to myself, let alone her, and our relationship required that. She had the most potential to point me toward my own liberation, but instead of comprehending that, I was determined to set her aside and require that my parents fill that role. Maybe this was a stall tactic or maybe it was a valid step in the stages of growth. In hindsight, I know Chris’s demeanor would have soothed me. Like a skilled poker player, my sister was the person in our house who not only saw the best in me, but often raised it.

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Dianne + Chris on Halloween, 1984.

The Origin of Dr. Irma King After Chris moved out of our house, my mom and I traveled to New Haven to watch her swim at my old college, which was hosting the Special Olympics. We sat on the bleachers to watch her first event, the backstroke, and she got off to a strong start. But when Chris noticed us in the stands, cheering and waving, she started to mouth, “Go home,” each stroke a punctuation mark. “Go home,” stroke, “Go home,” stroke. No one seemed to know what she was saying or that she was saying it to us, but we were slightly mortified—and also slightly amused. She’d never done this before. Now that she was on her own, we learned, she didn’t want us to see her compete in the Special Olympics anymore, let alone talk to her after an event. When she returned from the 2004 Special Olympics, a real “special miracle” happened: she introduced herself to us with a new name: Dr. Irma King. Why she chose Irma is a mystery, but King was the last name of Christine’s favorite manager at her supervised apartment, Jackie. Taking a different last name was another way to establish distance from us, and claiming to be a doctor also meant she’d surpassed my own educational achievements. Chris was launching her own identity and forming alliances with those she saw more regularly. Dr. King explained to me that she’d earned her medical degree during the numerous weekends she’d been housed at various colleges to participate in the Special Olympics. It was like she’d accumulated reward points from a hotel chain for staying at its properties so many times, receiving not just free breakfasts, but also the elevated status of doctor. It was true she’d had plenty of medical experience, of a sort, at the Special Olympics. A combination of hypochondria and attention seeking usually made her

the number one customer at the first aid tent, where she’d claim she had some type of illness or injury that required care. Chris’s first night away, my mother inevitably received a call about a possible sprained ankle or sore throat. She’d tell the worried person that it was made-up, a play for pity, and to just give my sister a Tylenol and tell her to go to bed. Still, Chris usually acquired a few ace bandages or a set of crutches. Sometime after my sister had become a physician, I got a paper cut on my eye from my Old Testament take-home test, and Chris came to visit me at my condo with our mom. She talked nonstop. My mom and I dubbed that “the talking cure.” When I asked Chris to be quiet, she said, “It’s okay, Sister, it’ll make it better.” It didn’t. When I prodded Chris about her specialty, she maintained that she’d learned about “all kinds” of medicine and was trained to practice every single one I listed. I was getting nowhere, but persisted like a nurse looking for a vein and tried another tactic. “If you were on a plane and the pilot asked for a doctor, would you offer your services?” She responded with an exasperated huff and went back to her word search puzzle. I tried again: Me: Why’d you become a doctor? Chris: Because men are doctors, and I’m a man. Me: Oh. Do you have a penis? Chris: Yeah, I got two of ’em. She was right about one thing: even in 2004, men still had dibs on better jobs. While Chris had a history of changing names, I explored my identity with outfits. The androgynous dressing I’d begun in high school continued well into college. I bought overalls and vintage men’s clothes. I camouflaged myself in military fatigues from the Army & Navy store. Thus attired, I was ready for combat. In my mid-twenties, my uniform was a man’s fishing hat, a big yak-hair sweater or a shirt that covered my ass, Birkenstocks with socks, and either boxers over long johns or, if it were warm enough, just boxers. My look was part California beach bum, part giant male toddler. My cousin Jae gave me a copy of Daphne Scholinski’s The Last Time I Wore a Dress, a memoir of what was then called “gender identity disorder.” To an 96

outsider, it may well have looked like I had some form of gender dysphoria and that I was somewhere on the spectrum of what is now call “trans.” As I tried out selves like parts in a play, though, gender seemed less important to me than finding ways to act independently, feel in control, and remain hidden from male scrutiny. Chris’s experience with gender was different. Beginning when she was a preteen, she often referred to herself using male pronouns. Her name, she said, was not Christine, but Christopher. When she’d announce she was our parent’s favorite son, no one questioned her—she was. She never called herself a daughter. She preferred boy’s clothes that were brown or navy blue. She identified with male athletes, wore sneakers and baseball caps, and hated wearing dresses and bras. Upstairs at home, she was allowed to go shirtless, but she once walked outside without a top. It was in the middle of a tag sale at our house and I was mortified. Her need to have short hair is notorious. Chris hates having her thin, straight hair long enough to touch her face, so she sometimes performs the “home-cut.” This prompted first my mom, and now the staff at Chris’s home, to hide all scissors, nail clippers, and disposable razors. Recently we had to add potato peeler to that list since she apparently used one to trim her nonexistent “sideburns.” Chris: I’m just gonna let my hair down and be myself. Our mom: You won’t have any if you keep cutting it. My mom’s strategy has been to get Christine’s hair permed, which keeps the hair off her face and prevents the home-cut. There was a short period in the late 1970s when I was the only member of my family without a perm: my parents got them, too, with matching highlights. Chris’s perms have never been flattering, and—despite her utter disinterest in fashion—even she knows it. Because I’m always curious to see where she’s experiencing herself on the gender spectrum, I asked Chris after a recent perm, “Are you a girl or a boy?” She normally says, “A boy and a girl, both,” but this time she replied, “I’m Richard Simmons.” Her hair actually did look like Richard Simmons, just a somewhat more feminine version. After that, I convinced my mom to let Christine’s hair grow longer so we could pull it back in a ponytail or use a headband to keep it off her face. It took months to grow out. 97

Chris was only allowed to use scissors while being supervised. One day, when a new staff member was on duty, my sister told the naïve woman she wanted to cut coupons. As soon as Chris had the scissors she proceeded to the bathroom and cut her bangs—completely off her head. No more perms, mullets, shags, pixies, or bobs for her; she was so postmodern she created a style that wasn’t even invented yet, a cut with no name. When I asked Chris how this possibly could have happened, she claimed the new staff person had come into her room and cut her hair while she was sleeping. I said, “Nice try, Samson. Was her name Delilah?” She nodded yes. After this, and against my advice, my mom went back to the perms. For a while my mom preferred the Walmart salon to get my sister’s hair done because it was cheap, convenient, and did I mention cheap? My mom dropped Chris off like a car for an oil change, left the stylist instructions, and then went shopping. This lasted a few visits until my sister asked the hairdresser to only put curls in the top, middle part of her hair, in a style known as a “fro-hawk.” When my mother reappeared and saw my sister she was livid, especially at the poor lady who’d followed Christine’s wishes. But really, what was the hairdresser to do? It’s an unorthodox styling request, but I also know from years of experience my mother’s not always clear, and my sister has ways of defying my mother and getting what she wants. Because my sister doesn’t suffer from the virtues and curses of hesitation or worry what others think, she’s never been weighed down by fixed gender constraints. In more and more circles people who are transgender, gender-fluid, and gender-nonconforming are encouraged to be themselves. But Chris has always been able to do that. No one felt the need to bestow any more identifiers—not that she accepted or looked for them anyway. This allowed her to change her name, earn advanced degrees, and be both a woman and a man. If my sister were offered gender-confirmation surgery, I wonder, would she take it? And how, if at all, would it change her life? She claims she’s Dr. Irma King, the M.D. with the two penises. Does it matter that she’s not?—only if you let her try and save your life. In 40 years a lot has changed. What if I displayed my former tendencies now, would I make different choices about my exterior, my sexuality, and my genitalia? I doubt it, since it was always more about how I felt about 98

my body, not how I felt inside of it. It didn’t help that my mother acted as my personal sentry when I’d gained weight in middle school. I was only one size larger than most of my friends, but because I’d been two sizes smaller for years, she was concerned. She commented on everything I put in my mouth, and I absorbed her judgment. Though not as much as others, I also wanted to belong, and the way I interpret the world has been influenced by social convention. This can be both lovely and oppressive. For example, it’s taken me years to realize how physical beauty, like Down syndrome, is simply the result of genetic traits falling into place. No one earns his or her face, or the special treatment they might garner because of it. Yet I used to worship the god of beauty. I thought it was my duty, as a female, to be attractive. I frequently sold out every other positive trait I had to pay homage to this ideal. My self-evaluation began early. On the bus to school one morning, I remember catching sight of a girl in the driver’s mirror who looked as washed out as an overcast sky. Her eyes were dark and her expression worried. She repelled me. I can’t recall how many seconds passed as I stared at her and realized I was looking at myself—a second grader in a bell jar. Sometimes I long for my sister’s creativity and freedom. Recently we went to shop at T.J. Maxx and she helped me pick out a dress for an upcoming wedding. It was the best shopping experience ever. It didn’t matter if my ass looked like you could land a small plane on it; her feedback when I modeled each dress was, “It’s not bad.” It didn’t matter if I couldn’t zip it because I daringly took a size smaller than I fit into, she still shrugged and said, “It’s not bad.” When I finally found the right dress I said, “It’s not bad,” and without hesitation she said, “It’s not bad at all!” For so long I wanted everyone else to accept my sister and me, but I couldn’t accept either of us. I do now. All she and I really want is the self-determination to be inconsistent, but authentic in our choices and not have it represent anything. Chris doesn’t care what others think of her appearance because she doesn’t evaluate other people based on theirs. She was always the mirror I should have been looking into.

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Dianne and Chris, First Communion, 1974 and 1975.

Acts of Contrition Exodus 20:15 states: “You shall not steal.” But this didn’t sink in until second grade when I was working to earn my sacrament of reconciliation badge. Before that I was trying to secure my petty theft badge; while being dragged along on my mother’s errands I tried to make it advantageous for myself. Our bank had a little wishing well to collect change for a new hospital. While my mother was waiting in line, I’d go to the well, grab a quarter out of the water, and stash it in my pocket. When we got to the grocery store, I’d tell my mother I had to pee. My weak bladder was the secret to my success. I’d quickly buy a candy bar, get the bathroom keys from the women at the credit union in the back of the store, and eat my treat in the privacy of a stall. At some point, I decided it was easier to steal the candy when we checked out and hide it in my pocket or sleeve. Then I’d go to my friend Lynn’s to play, and when I’d return, I’d tell my mom Lynn gave me the candy. This worked until someone spotted me swiping a Chunky Bar and told Neddie next door, who was the store manager. He called my mother, who made me return the goods to him and apologize. It was awful, because Neddie was like a grandfather to me, and also annoying, because dammit, I never got to eat that Chunky Bar! Though it temporarily rehabilitated me from stealing, I eventually figured out a loophole to use in confession. We went monthly and I’d cleverly omit from the priest that I’d stolen something from my line-up of sins. Then, the next time I went I’d just confess that I’d lied since I last confessed. It was a brilliant, if not sociopathic, plan. Chris tried to be as sneaky as I, but lacked the guile. Plus, our vigilant mother had hearing like the Bionic Woman. When our mom worked in the backyard, my sister would tiptoe into the kitchen, take some mustard

and cheese from the fridge to make a sandwich, and close the door lightly. The next bit was trickier. Unless she opened and closed the cutlery drawer very slowly, it sounded like a lively wind chime. The final hurdle was the bread drawer. If it hadn’t been properly lined up by the last user, it screeched like a train braking on the tracks, eliciting another screech from outside: “Why is someone in the bread drawer?” Hearing my mother, my sister did one of two things. She made the sandwich like it was a timed contest at the town fair, or yelled back, “It’s not me and I’m not making a sandwich.” Either way our mother would be off the ground running. In the meantime, my sister would grab a piece of bread, shove in a slice of cheese, fold it, and take a bite. The mustard was a lost cause—valuable time couldn’t be wasted on condiments. Sadly, because Chris also has impeccable manners, instead of escaping with her booty and hiding, she started to clean up while eating. When our mother threw open the cellar door, Chris would hide the sandwich behind her back. “Give it to me.” My sister garbled a weak “What?” then shook her head no and continued to chew. My mother grabbed the rest of the sandwich, tossed it in the trash, and sang a lilting, “Goodbye.” Then she dragged Chris outside to help her. If I’d been a nicer sister I might’ve made Chris a sandwich or been her lookout, but this didn’t happen for several reasons: (1) she always ratted me out, (2) if my mom made her work outside, I’d finally get control of the TV that Chris always hogged, and (3) I secretly liked it when my sister got in trouble. Years later, when Chris entered the working world, her team thought food service jobs might be a good fit. But it became clear that being around food, which Chris simply loved too much, set her up for failure. At one restaurant she popped an unshelled, hard-boiled egg in her mouth and tried to deny it with the whole thing still in there. In her mind, she was a magician making that egg invisible to the world, but somehow the illusion failed to trick her pesky boss. They moved her to a supermarket next, where Chris sometimes got in trouble for stopping by the bakery and helping herself to a self-serve coffee or a muffin from the case. It seems that two of the older ladies who worked

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there had occasionally indulged her, and Chris didn’t quite get that when Wanda or Gloria were not in, the muffins were not free. When I got wind of this, I was worried she’d lose her job, so I tried to instruct her: Me: Repeat after me, “I can’t just take the muffins.” Chris: I like the muffins. Me: But that’s stealing. You have to pay for them. Chris: I’ve got money. Besides, you’re not the boss of me; I’m older than you. Me: Not even by a year. Just say you won’t take the muffins! I kept at it, asking again and again, “Are you gonna take the muffins?” But she’s a shrewd evader of questions so her answer was never no, just a series of yeses and one or two maybes that, in their honesty, made us laugh. I finally realized those muffins didn’t stand a chance in hell of staying in the cases and there was nothing I could do about it. For a while, that seemed okay. Chris could get away with things other people couldn’t. Our cousin observed her with her work buddies outside, where they were supposed to be gathering carts. Surrounded by her peers, she was reciting a story in her inimitable way. When it was over, she raised her hands with a flourish and gave everyone high fives. They were still basking in the glow of her performance when Chris walked through the whoosh of the automatic doors, leaving them to collect the rest of the carts, and musing aloud to herself, “My work here is done.” Unfortunately, it soon was, because Chris had moved on from the bakery to the dairy case. She grabbed a yogurt and went to the break room. Somehow the management was aware that an item was missing. She was mid-swallow when the manager came in, threw away the half-eaten container, and fired her. Did a co-worker rat her out? Did the hidden cameras tip them off ? Did she leave behind some evidence? We’ll never know. But for a while afterwards, she walked around the house raising her fist and slowly proclaiming, “Damn yogurt.” It was as if, in her mind, it was the yogurt’s fault. As if to say, “You nasty yogurt, you dairy case temptress, you’ve ruined me for the last time!” Or

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perhaps, like me with the Chunky Bar, she was annoyed the manager hadn’t let her finish the snack she felt she deserved. After that, her job coach found her employment cleaning a nearby church, and she was better for about a year. Then my mother discovered Chris was stealing sections of the Bible from the pulpit. You’d think having lost other jobs, and being in a church, would have some small impact on my sister, but no. She’d tear out the pages, fold them, and stuff them in her purse between her stash of bowling scorecards and take-out menus. When my mom confronted my sister, Chris lamented, “Well, I almost got away with it.” I joked with my mom that maybe she was trying to rehabilitate herself and was stealing sections about repentance. “Probably not,” my mom said, “’cause the Bible was in Polish.” A week later I saw Chris, and queried her: Me: How’s work? Chris: I got caught with the pages, but God never gets mad. God knows I never take anything. Me: That’s not what mom says. Chris: Tell her I’m done with that now and it’s not gonna happen again. Me: I don’t believe you. Chris: I guarantee it, Sister. As she high-fived me she added: “Amen to that.” I considered what she said and found it comforting that her version of God is so accepting. It’s like she’s assuming, “God doesn’t give a shit about my stealing, and if God doesn’t care, maybe the rest of you should back off.” Maybe we should. Or at least blame Vatican II for Chris’s behavior. Since we were each in utero, we’d been taken to every single Mass the Catholic Church required of its flock, but the priests had cut down on the fire and brimstone. Mostly, though, I think Chris just knows what she wants and does what she needs to get it. In a recent meeting at her supervised apartment, we were informed that she’d reduced her thefts over the last three months from 12 items down to seven, but it’s never been zero. She’s had 104

what she calls “sticky fingers” since we were kids, and picked up objects as well as food: a ring from her friend Joycie’s house back in the early 1970s, which my mother immediately had her return; a pink plastic cell phone covered in Disney princesses; writing utensils of all sorts. She pulled the phone out during a meal a few years back as if it had been ringing, and when my mom and I asked her, in unison, where she’d got it, Chris just tucked the phone between her ear and shoulder and gave us her standard line. Chris: What? Nowhere. It’s mine. Me: But it’s a kid’s toy; did someone give it to you? Chris: Yeah, the staff gave it to me. (Then I remembered seeing it at my uncle’s on Easter.) Me: Did you take it from Barbara’s or Lori’s? Chris: Barbara’s. Me: Aha! You’re gonna have to give it back. Chris: I promise I will later. But I have to finish this call, Sister. In high school she carried around a bag of plundered pens wherever she went. When I daringly asked to borrow one, she peered into the bag and jiggled it to find the perfect one, which is to say the crappiest pen that also worked. She hovered over me like a hornet above a morsel of food as I wrote, repeating: “Are you done with it yet? Are you done with it yet? Are you done with it yet?” I lost my patience. “Does it look like I’m done? Since you probably took this pen from me last week, I may not even return it.” She emitted an indignant gasp. I continued, “Listen, you have over 200 pens in that bag, why don’t you stick your hands in, feel the power of the mighty pens, and let me keep the one I’m using!” She backed into a nearby chair whispering swears under her breath. Moments later, when I returned the pen, she huffed in relief, “Thanks, darling; it’s about damn time.” Having endured years of interrogation, Chris has developed a habit of repeated, persistent denial. But since she also has a habit of processing her thoughts aloud, she’s prone to accidental confessions. When we are under 105

the same roof, and I hear her chattering to herself before she falls asleep, the truth comes out. “Yeah, so what if I took Sister’s cell phone; it’s mine now.” Or, “I got Joel’s red hat in my bag and I’m gonna wear it tomorrow.” “I heard that!” I’d yell. She answers, “What? I didn’t say anything.” Then I’ll hear, sotto voce, “Besides, I wasn’t talking to her.” I doubt this behavior will ever end. When she enters into the house where I live now, I walk backwards, facing her and making the two-fingersto-the-eye-and-out gesture to show her I’ll be monitoring her every move. Otherwise, I’ve learned, she’ll look around to see what she can pocket. If I leave the room, even for a few seconds, when I come back I typically have to say, “I can tell you took something. Whatcha take?” “Nothing,” she’ll say. Then, placing a pen or some other small item back on the counter, she’ll add, “Nothing special.”

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Land of the Lost Years In 1989, when I was 23, my mother told me she’d suffered through her marriage for years, because the Catholic Church didn’t sanction divorce. Her spiritual director had her talk to a priest she knew, and he said my mother could have the marriage annulled. Now that Chris and I were living out of the house, she felt empowered to make choices that improved her own life. She was only 50 and had begun to travel a lot. She was sick of having a partner who was rarely sober, didn’t dance, and was afraid to fly. She also was hired by the State of Connecticut, and was paid more and had better benefits, so she didn’t need him to support her. After my depression had dissipated and I graduated from college, I’d moved to Florida for a couple of months to work and live with a friend in Boca Raton. I’d only been there a week when the sheriff back home served my father divorce papers. His first response was to get wasted, and then he began calling some family members who suggested he go to rehab, like they had. They helped him find a program and he spent a month in what he affectionately called “the joint.” When my father got out of rehab, my parents lived in separate houses right next to each other. He was in the red one they’d built, and she was in the white one they’d bought three years earlier as a rental property. When I returned from Florida, I moved into an apartment with a few friends near UConn, and my father was suddenly nice to me. He took me to dinner and said his counselor in the joint said he needed to make amends for his failures as a parent. He told me he couldn’t change the past; he could only do things differently now. He did do things differently. Over the summer and early fall, after I’d moved to live with a different set of friends in Massachusetts, he remained

attentive to me. I was so touched that when he asked me to help him convince my mother to go back to him, I did. Her one condition was that he’d never drink again, and if he did she’d leave him. When she moved back into the red house, he no longer absented himself from us. But he never attended AA meetings like he’d promised when he left rehab, and I was disappointed. Soon it became clear that he’d only been using me to win my mother back. I’d moved home at Christmas because the friends I’d been living with were starting grad school elsewhere. My father had been becoming more standoffish from Thanksgiving on, and he wouldn’t tell me why. By New Year’s, he told my mother I had to leave. I went to him and directly asked why, but he offered no explanation. My mother thought it was because I parked in front of his garage one night, and I had once left my just-used hairdryer on the stove to cool. I wanted to rewind time and approach the whole divorce, rehab situation differently, but it was too late. I longed to have a father so badly that I’d allowed myself to believe he’d been cured. Instead, he’d become what’s known as a dry drunk, someone who falls back on many former hurtful behaviors, but without alcohol. Unfortunately for me, as long as he remained sober and dedicated to my mother and sister, they acted as though all was well. It was as if my mother and sister developed selective amnesia, or as though an entirely different person, like a stepfather, had replaced my father. The three of them formed a new family triangle without me. I felt betrayed, like an employee who’d been fired without severance after giving years of service to the company. Like a whacked-out version of Hamlet, I subjected my friends to angry rants, which must’ve been exhausting. I was also grieving. For six months, for the first time in my life, I’d had a father, and now he was gone again. My mother was acting as if my father and I were simply in a fight, and she wasn’t going to be in the middle. After all the spiritual direction, she refused to take sides. But to me, this wasn’t a basic argument—I’d simply been wronged. I was no longer asked to attend holiday celebrations, birthday dinners, family meals, or trips to the beach. I’d still stop by the house sometimes, usually if I knew my father wasn’t home, but if he were, I’d walk right past him to find my mother.

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Dianne in Boca Raton, Florida, 1989.

To add insult to injury, he sold me his old car after mine had died because he was buying a new one. I paid him $2,000 and drove it for a month before it also died. He offered no compensation, and I had to use the rest of my savings to buy another car. I felt saturated with rage. Even though Chris was living apart from my parents, the ease with which they all got along was so painful for me to stomach that I had a hard time being around her. My father was able to buy her affection by taking her out to eat and giving her little gifts. But I wanted a sister who would take my side, corroborate our shared experiences in childhood, or at the very least offer solace. She wasn’t capable of that. Even though my family was the source of my frustration, I stayed close by them. I rented a two-room apartment downstreet, about two miles from my parents, where my friend’s grandmother was my landlord. It didn’t have a kitchen, but it was affordable. Like a fading Hollywood star, I took to my bed a lot, sobbing with the covers over my head. Eventually, I moved into the white house next door to my parents and paid rent. Even though it wasn’t the best option, it did allow me to see my mother, and also my sister when she came home. I commuted to UMass Amherst to earn a master’s in education and worked 20 hours a week as a T.A. for the school’s resident arts program. To pay for school and insurance, I picked up part-time jobs tutoring, waitressing, cleaning houses, and babysitting. Some of my closest friends from high school were still in town or nearby, working and attending school themselves, and I spent a lot of time with them and their families. As the honeymoon phase between my father and mother incrementally wore off, my mother was faced with the fact that my ability to plan my future had become as stark and shadowy as an episode of The Twilight Zone. I’d gone backwards since moving to Florida, UConn, and Massachusetts. But, she’d also gone to enough Catholic retreats and spiritual direction sessions to see that she may have been partly responsible. Once, she came home from a meeting and told me, “My spiritual director says it’s my job to fix my relationship with you.” But something in that sentence also felt like I was supposed to tell her exactly what the requirements were for her to do the job of fixing our relationship. I didn’t know where to start. I’d wanted to hear her say this my whole life, but now that she had, I was discomfited. I knew it was a 110

big step for her to be vulnerable, but it was foreign to me. Her toughness was familiar and unfailing, and I’d grown to depend on that. I was afraid to share how much I’d felt hurt by her, and based on my father, I didn’t have faith relationships could change. So instead of disclosing this to her I just softly said, “It’s okay.” It wasn’t, and I was so grateful she tried, but I was too much like her now to meet her, or anyone, halfway.

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Breaking Point After several years of commuting to Amherst, I finally decided it was time to leave my hometown. When I compared myself to my friends, it was as though I’d been stuck behind an electric fence. They were getting married, having babies, and moving to Europe. So, I sublet a classmate’s place for the summer as a trial run and planned to move in with a fellow grad student that autumn. I was so apprehensive I only stayed one night the whole eight weeks. After making steps toward breaking away for so long, not being able to do so was the failure that broke me. Luckily, I’d been going to a therapist for a while and we’d already started to process my ongoing separation anxiety. Like my peer counseling teacher back in college, she was Buddhist, but she offered more comforting maxims, like “Crisis equals opportunity” and “There’s always a light at the end of the tunnel.” She’d caught on that I was prone to babble about minutiae in our hour together, and had been using guided imagery or hypnosis to access my subconscious. In one session, we discussed not just my fear of moving, but also why I’d become obsessed with Keanu Reeves. The Keanu fixation had started innocently enough—I fell for him in Speed—but it was after Point Break it became an unhealthy fixation. I collected magazines with interviews and pictures. I rented and watched his films. I’d stay up late and go through 100 cable channels conjuring invocations like, “If I see Keanu on TV, it means I’m going to meet him, marry him, makeout with him. . . .” My friends encouraged me, sending me articles and telling me when he was going to be on late night talk shows. My friend Jocelyn even taped them for me. Their rationale was probably that if I were involved in a pseudo-relationship, I’d stop whining about not having a real one, though one friend, Terry, did try to dissuade me: “I know this lawyer in San Francisco; he claims he made out with Keanu once.”

I just replied, “Oh my God, that’s totally hot.” The day after I learned on a talk show that Keanu had been in a remake of Babes in Toyland, I drove to several towns to see if any video stores had it in stock. I’d never even seen the original, but if I didn’t score the new Babes in Toyland and get my Keanu fix, I was going to crack! At the fifth store, my hopes dashed again, I caught sight of my reflection in a mirror behind the counter. My face registered a look of desperation that indicated it was time to give myself over to a power greater than myself. And that power was a little thing called humiliation. I knew my obsession was ridiculous, but a part of me felt that if we met we’d really get along and he’d somehow appreciate me for who I was. Not the actor Keanu, but the guy on the talk shows, who was funny, sweet, animated, and self-effacing. I loved his voice and, let’s face it, he’s incredibly handsome. But, deeper down, I was stuck with the reality of being single. Every few months I was going to a cousin’s or friend’s wedding alone. The longer I was unattached, the harder it was becoming to accept it, and I just wanted to feel connected to someone—real or make-believe. I knew it was time to stop, and it had to be cold turkey, so I gave up seeing his films, put my Keanu collection into a brown paper bag, wrote a large “K” on it, and placed it in my parents’ basement. That was one small victory, but I knew I wasn’t ready for Amherst fulltime. Over the last few years I thought I’d become strong enough. I’d taken a lot of classes and workshops. The Five College area was nicknamed the “happy valley,” and it was the perfect setting to explore alternate modalities and ways to be human. I learned about dousing, chakras, intuition, psychosynthesis, guided meditation, mantras, mandalas, astrology, and near-death experiences. I studied I-Ching, Runes, Kabbalah, the Dead Sea Scrolls, and the Tibetan Book of the Dead. I started buying crystals. I kept a dream journal and would sometimes sit in on Ananda Marga sessions at the student union, where a roomful of students listened to talks about meditation or Kirtan, and then stood to do a Kirtan together. That meant singing while clapping and sidestepping to the Sanskrit words Baba Nam Kevalam (“only the name of the beloved”), which was backed up by the melody of Cat Stevens’ “Can’t Keep It In.” For my Future Studies class, I was also reading books like Story of O and The Story of the Eye, and having academic discussions on the distinctions 113

between pornography and eroticism. These texts may have had an impact on one particular hypnosis session. I’d left it feeling okay, but woke up in the middle of the night as if a bomb had been tripped inside me. Because of everything I’d been immersed in, I deduced that I’d entered into this altered state because my Kundalini had awakened. In Hinduism this is the divine energy at the base of the spine, and once it comes to life it can be blissful or cataclysmic. Unfortunately, it wasn’t blissful, but terrifying and out of control. I was back inside “the bubble” and now my only destination was to get out of it by going back through the holes I’d made to get out of the last depression. I went to my therapist as much as I could afford. She was my witness and my companion, and she assured me I could call her anytime. This unconditional gesture saved my life. We continued with the hypnosis. I also did art therapy, making masks to represent my various feelings. I tried Gestalt therapy, sitting in different chairs to play the other members of my family, and have discussions. I wrote them letters. I reckoned with God and anyone I loved who’d died. And in between was the weeping and gnashing of teeth. I also learned that I didn’t have to forgive my father or work anything out with him. My therapist said, “The best forgiveness is to get on with your life.” I grabbed onto this new truth as if it were a pulley attached to a zipline, and flew far away from the sense of guilt and personal responsibility that years of Catholicism had taught me to keep close. Still, I suffered from agoraphobia and severe depression. Like before, a psychiatric hospital was off the table, so I stayed with my parents. It was the last place I wanted to be, but I had no clue about what else to do. My father and I were still not speaking and ignored each other. My sister was living in a house two towns away, as independent as she could be. She wasn’t aware of my depression, and there was no reason to tell her. My therapist showed me a poem by Rumi: “The breeze at dawn has secrets to tell you, don’t go back to sleep.” I joked that this would be easy enough, because I hardly slept. Most days I’d get up between 4 and 6 a.m. For a few idyllic moments, I might forget I was depressed, then opening my eyes and looking at the alarm clock would reanimate it, like a computer reloading backup data from an external hard drive. Occasionally I’d wake up with my arms crossed over my chest. A couple of times I had sleep paralysis. I couldn’t move, speak, or make a sound. I 114

felt like I’d been prematurely mummified and trapped in a sarcophagus. My chest and neck ached. I was frequently nauseous. My stomach muscles often hurt, from throwing up, or dry heaving. This made swallowing food problematic. I could manage to chew and keep down yogurt, broth, scrambled eggs, pudding, and grilled cheese sandwiches, but I lost 40 pounds in two months. Everyone said I looked great! I was dying inside. To work out the anxiety, I walked for miles every day, even in the winter, except during one big February snowstorm. I wrote poems, but mostly I typed 600 single-spaced pages mapping my interior landscape—desperate, raw, repetitive material chronicling every thought, feeling, worry, slight, fear, sadness, and ounce of anger I’d ever experienced. Years of rage fled my body through my fingers. I listened to self-help cassettes. I read tons of Joseph Campbell. I walked to Mass every day, where I’d meet my mother, and she’d drive me home. A student who worked with me at the gallery was a religion major and we talked philosophy. Him: You can’t know anything. Me: If you know that, you just disproved your point. He’d had his own struggles with the Faith. I transferred my Keanu obsession on to him, which was the one hopeful experience that distracted me from my situation. When I divulged my romantic feelings to him, he kindly said he hadn’t noticed I was interested, and didn’t feel the same, but by then simply my attraction to him had saved me. He was the first person I met who was interested in talking about religion philosophically and also learning how to be comfortable in the world without the scaffolding of Catholicism as a practice. I knew I was breaking up with the Church, and spending time with it before what felt like an inevitable goodbye. I was moving toward transcendence, but not before immanence. It’s hard to explain, but I wanted to live in a world where God was within me and outside of me, but I hadn’t found it yet. (Ten years later I’d discover this home in Taoism.) Nine months into the depression, I began researching medication, which—aside from the occasional Benadryl when my sleeplessness was too hard to handle—I’d avoided. Now I took Zoloft for the prescribed six months, and it mostly worked. It may have reduced my hippocampus, which is our memory center, because I began remembering parts of my old 115

self and started integrating them with parts of a new one. Mornings were still hard, but at about 4 p.m., there was a shift that made nights bearable. When I went off the antidepressant, I experienced a bad patch where I felt even worse than before. I’d have small electric jolts in my body. I thought about the S-word as a concept. It was very seductive. I had to work really hard to tell myself that suicide is a symptom of depression, and also part of the withdrawal. My friend Jocelyn reassured me by telling me that as an undergrad she’d spent a month in bed worrying. One day she realized people hadn’t been able to figure out the secrets of the universe for thousands of years so why should she. This somehow cheered me, as did the encouragement of knowing that if I needed meds in the future, I could use Zoloft again. When a major depression dissipates, life comes back to you slowly, like feeling returns to your mouth as a shot of novocaine wears off. All I’d really wanted for 12 years was to not be depressed; I’d literally lost years of my life, which I’d never, ever get back. When I entered remission, I wondered if I’d spend my life avoiding risks, outrunning anxiety and depression by always choosing to stay under the radar. It would be so easy to stick with what worked, to simply be happy with eating and sleeping, reading novels at the beach and going to the movies. If I never strayed too far, physically, emotionally, and creatively, would I never have another panic attack? But I wanted more than that, which would mean learning to trust others and myself, believing in possibilities, listening to my gut and, as we heard over and over in my master’s program, trusting the process. A year later, my friend Carole called to tell me her brother was opening for Keanu’s band Dogstar at Toad’s Place in New Haven. I immediately got two tickets and forced my friend to go with me. Was I strong enough to handle seeing him? What if I got to meet him? To prepare, I rehearsed an old scenario: I approach him and say, “Hi Keanu, here’s a book on Buddhism, you like that kinda thing, don’t you?” As he slowly gathers his thoughts there’s a long pause and he says, “Yeah.” The next day we get married. Oh yeah, I was definitely ready. When we arrived at the club, I realized there were basically three types of women in the crowd. Closest to the stage were the college girls with big hair and big nails. In the underage section were the teenaged girls roped in like emaciated livestock. And then there were the out-of-place, older women, 116

and I had to put myself in that group. This was an important insight and probably worth further reflection, but I didn’t have time to grapple with these complexities because Keanu, the hottest man on Earth, was playing the guitar 10 feet away from me. I never got backstage, but I shot two rolls of film and thus avoided the relapse I’d feared. When I discussed the experience with my therapist, I realized I still had some residual longing—for Keanu, for others I’d recently pined for, and for someone new. “I feel like I’ve missed the boat,” I told her. “There’s always another boat,” she assured me. Boy, has she been wrong about that.

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Dianne at the Grand Canyon, 1998.

The Abyss A few weeks before my 30th birthday, I finally cut the cord—or at least, stretched it—and moved out of my parents’ house to a place of my own, about two miles away. I continued to commute to Amherst, where many friends from grad school had settled, and where I was taking writing workshops and employed as a personal assistant to a science professor. It was a dream job, both because she was an amazing person and because her home, a historical landmark, had been part of the Emily Dickinson homestead; my office overlooked the poet’s gardens. All these circumstances meant that I hung out with my sister even less. In most ways I’d released her to the group home system, and let my mother be our go-between. It felt strange to be on the periphery of her life, and still does. If I want to be with Chris, I can’t just show up so we can watch TV or make dinner. I have to communicate through the staff to arrange visits. Since my sister can’t drive, and most homes only provide transportation to work or other sanctioned activities, everything had to be planned a week ahead. But as I approached my mid-30s, I knew my resistance to seeing Chris was about more than logistics. We’d barely touched on these issues in counseling, but I was realizing how many unexpressed emotions I’d still been clinging to. When I was eight, for example, my grandmother let me have the white, plastic egg that her panty hose had been sold in. I planned to use it as a hamper in my makeshift Barbie house. When my sister saw it, she demanded I hand it over. When I refused, she complained to our mother, who said, “Your sister can keep it. I’ll find you something better.” As was typical, she did: Chris got a small transistor radio. My father had often told me, “If your sister can’t have something, neither can you.” I also heard that as, “If my sister can have something, why

can’t I?” Why? Because, in my parents’ eyes, my sister needed to be compensated for her Down syndrome, while I was supposed to be grateful for the gift of not having it. I was somehow lucky. But I never felt lucky. I reminded my parents of what my sister wasn’t. I was the standard they measured her supposed lack against. And in their minds, I was lacking something, too: because I didn’t have Down syndrome I wasn’t born with Christine’s innate capacity for unconditional love, forgiveness, and selective amnesia toward them. What I lacked was also the standard I was measured against. Around this time, I had a dream, almost a vision. My sister and I were in a shopping mall looking for George Michael and found a door in the floor. We entered a humongous room with a lake in the center. Across the lake was a field that had a pile of body bags on it. A man told us to swim to the field and we’d get $25 for every bag we sat on. Next, a woman told us to cross a dam on a narrow bridge of concrete, and the drop was very far down. I was so frightened Chris might fall. We slowly shimmied over it like snakes. Once we got to the other side, my sister disappeared. Then the dream shifted and I was back at the lake many years later. To the people there it was still the same day. I observed the exact scene again from a glassed-in bridge. There were things I couldn’t see when I was part of the action. I saw large fish and people crossing the lake on donkeys. I saw a gigantic horse carrying Jesus as a boy. I began to feel sad that when Chris and I were there our only option was to swim, but others had been given easier ways to cross. This dream helped me realize, though I was stuck with the work of single-handedly navigating back and forth between the space linking my sister and me, it wasn’t my sister’s fault. And as I came to understand these dynamics, I knew it wasn’t fair for me to displace my resentment toward my parents onto her. I missed Chris, and I longed to be with her so we could set a cast around the fractured parts of our bond and restore it. So one Saturday, I called Chris to see if she wanted to go to lunch and a movie the next weekend. She enthusiastically said: “Yes!” But when I picked her up it was a different story. Me: Are you excited about going to the movies? Chris: No. I gotta get back home to watch the game. 120

Me: When I called, you said yes to movies and lunch. Chris: No, Sister. I don’t like the movies; it’s too dark. Me: What about lunch? Chris: Yeah, lunch is good, but I gotta be back for the game. Me: But don’t you want to spend time together? Chris: Sure I do, Sister. But the game is on at two. Me: Fine. I’ll bring you back now. Chris: It’d be nice to still have my lunch. Me: All you care about is food. Chris: Sister; don’t cry. Me: I can’t help it. I was really looking forward to this. Chris: I can eat first, Sister, and then you can bring me back for the game. Me: I’ll just get you something to go. I bought Chris her lunch, dropped her off, and then stayed in the parking lot sobbing. I didn’t know how to bridge this gap. Why wasn’t I more important than a fucking game? Doesn’t she know how relationships work? Doesn’t she know how to be a sister?! My grand gesture of reconciliation hadn’t seemed to matter in the least, since I don’t think she even noticed or cared I wasn’t really around. Chris can be ecumenical and loving in her attentions, but she’s not particularly choosy. She’d only called me twice without being prompted: one time to tattle on a staff person who was smoking in the house, and another to ask me to get her a puppy. When we saw each other, Chris never asked for details about my life— she doesn’t ask anyone those types of questions. If I said, “I love you,” she said, “Thank you.” But she used to write “I love you” all the time in my college letters. I didn’t seem to be more special to her than anyone else in whatever circles she found herself in. Chris had no clue I was struggling with our relationship. But, honestly, I hadn’t been much of a sister since she moved either. I wasn’t consistently spending time with her. I wasn’t calling her on a regular basis. I’m sure there were times when Chris needed me and I was in my own world or had lashed out when we were much younger, and maybe, because of that, she also resented me. My love for Chris has been steadfast, 121

terrifying and pure, and sometimes I feel as though I’d die without her. But there were times I couldn’t bear to be with her, because her focus, at almost every moment, is utterly self-absorbed. And so the day I tried to take her out, I learned another new and painful truth about why I’d avoided Chris. It wasn’t just bitterness and jealousy held over from childhood. It was also because sometimes, being with her disappointed me. Like my parents, I had a yardstick of my own, and I was measuring Chris against the standard that deepened the abyss of what I wanted from her as much as avoiding her had. I wanted her to act like a “normal” sister. I’d never fully accepted that she wasn’t going to snap out of it, change over time, and meet the ideals I’d held onto. I’d known we might not have full reciprocity, but I’d still wanted Chris to be more emotionally available. I wanted us to be like other sisters who bond and reflect on their shared experiences. But for us to survive, the meaning of sisterhood would have to be redefined. I’d been adhering to the same kind of narrow thinking that I was often bothered by in other people. Whenever my professors, preachers, and classmates pontificated about educational, theological, philosophical, or spiritual issues, they’d talk about what “each human” wants and desires, as though each of us were the same. And, they implied, anyone who deviates from these norms deserves our pity. The more I recognized the ableism in their thinking, the more it disturbed me. I’d always avoided disciplines like special education or advocacy that connected to my sister. I wanted something that was my own. I wondered about my place in the universe, and about purpose and meaning. I rejected commitment, and strove for individuality above all else, but, what about my sister’s philosophical or religious views? How does she define purpose and meaning? One evening, we were about 50 yards from the car and beginning to walk on the beach when Chris announced, “I gotta go back and get my bag.” “Why?” I asked. She said, “It’s got my Bible and my word search in it.” I told her to keep moving because we were already halfway down the path. I figured, it’s not like she’d do word searches on the sand, which she hates, or read something from the Old Testament to the seagulls. During the rest of our weekend together, and because I’d said no on that one walk, every time we were about to leave the house, she’d hide 122

from me and quickly stuff her pockets. She’d shove a Holy Land keychain from our mother in the left front pocket, her little bible in the right front pocket, her Easter word search puzzle in the back, right pocket, and some of those pages she’d stolen from the Polish Bible in her back, left pocket. I pretended not to notice. But perhaps these items contained a message for her: The universe is just a series of puzzles. Let us bow our heads and pray from these stolen pages of a Polish Bible. All kidding aside, my sister doesn’t appear to need one meaning or tradition to save her, and seems to happily survive never hearing or saying, “Everything happens for a reason.” Chris’s own idea of God may actually be doing word search puzzles. She doesn’t bother searching for the actual words. Instead, she circles random groups of letters and crosses off random words on the list. As both metaphor and meditative practice, her methods seem to evangelize that life is random: you circle what you want, cross off what you will, and in the end, what does it matter if you found the right word or not? In the spirit of all that is seen and unseen, maybe she doesn’t require the word of God, because the word search of God is enough. There’s a beautiful passage from the book Far from the Tree on the Talmudic notion from Exodus 37:9: “In the Torah, they describe building this huge tabernacle out in the wilderness . . . and on top of the vehicle that carries the tablets, they put two angels facing each other, because that is where God exists, between people.” * My sister has helped me realize that one doesn’t get closer to the divine; one simply tolerates the possibility there wasn’t any distance to begin with. The actual mission for me with both God and Chris has been learning how to shuttle back and forth between my illusions of that distance.

* Andrew Solomon, Far from the Tree: Parents, Children and the Search for Identity, (New York: Scribner, 2012), 206. 123

Stolen pages from a Polish prayer book at the church where Chris worked as a cleaner, circa 2000.

Mass Hysteria I was doing the dishes with Chris at the beach one Fourth of July and she was chatting away. I wasn’t really paying attention until she said, “God said, ‘The power of Chris now and forever.’” Me: Did you say, “Christ or Chris?” Chris: Christ and Chris, both. Me: Are you like a Reese’s Peanut Butter Cup God: two great tastes that taste great together? Chris: Yes and no. Me: Perfect answer, little Buddha. Chris: Yeah, I know Buddha, he’s a handsome devil. My mother and sister had gone to Mass that morning, but I skipped it. By then I was seeing myself, as I do now, as a cultural Catholic: I find comfort in the prayers, but I believe women should be priests, that becoming a nun should be a sacrament, and that pedophiles in the clergy must be excommunicated and put on trial. I wasn’t looking to replace Catholicism with another Christian tradition, but I remained interested in religion. After six years at UMass, I’d earned my M.Ed. and also a Certificate in Advanced Graduate Studies. Now I was living in my own condo, taking poetry workshops, and volunteering as a reader and editor at local presses and journals. I was able to travel more, and sometimes visited my friend Audrey in L.A., where we’d go to the Southern California Psychic Institute for readings, try out Wicca, and get acupuncture. I considered getting an M.F.A. in poetry, but because I’d kept the mysticism of the Church at my core and felt that spirituality and writing were linked for many poets I admired, I decided to apply to Yale Divinity School, to explore poetry and religion in tandem.

When I told my mother I’d been accepted, she didn’t say, “Oh honey, that’s wonderful.” She said, “You better not end up a Buddhist.” The school has a Christian Seminary, but since I’d actually been accepted to Yale’s Institute of Sacred Music and Arts with a full, merit-based scholarship, I wasn’t required to be affiliated with any particular religion. But my mom wanted to make it clear that exploring any option besides Catholicism was not an option. My mother attends Catholic Mass daily, and when dragged, Chris accompanies her. When Chris is not with my mom, one of the staff at her supervised apartment is expected to take her every Sunday (under the threat of serious hell-fire and damnation in the form of my mother’s irate phone calls to their supervisor) and it must not be a Protestant church. My mother’s most dedicated contribution to her home church has been the passing of the collection basket. Her territory is the front, right, midsection of pews. When my sister wants to help her collect, my mother is not exactly Christ-like. Chris would be required to wrestle the basket from my mother’s cold, non-stigmata-ized hands. In my mom’s defense, when Chris did the collecting, she’d converse with congregants in every pew, and a few envelopes would mysteriously go missing. Another time, as she returned from bringing the gifts, a.k.a. the bread and wine, but soon to be transubstantiated into the Body and Blood of Christ, Chris announced, “The wine is really good today!” While the parishioners in earshot were laughing, I wondered if she’d snuck a few sips. Chris also likes to steal the free liturgical calendars that are piled in the back of the church each December. My mom tries to stop her by either sitting at the end of the pew, making it hard for Chris to leave, or physically guarding the calendar table. Both strategies have limited effectiveness because my mother doesn’t stay in one place for long. She volunteers by greeting people, helping latecomers find seats, or collecting. So when other family members are present, my mom will enlist one as the backup calendar blocker. Once, when my cousin DeDe was the proxy, she sat across the aisle from my mom and sister. As soon as my mom got up, DeDe and Chris would eyeball each other, stand, and race to the table. This became a game where Chris wanted to beat DeDe as much as she wanted the calendars. We called it a passion play. Because this was our home church, and we grew up there, Chris was fully 126

accepted and known to most people. Though attendees didn’t have assigned seats, many sat in the same ones every week. When I was in college, I was home for the Saturday evening Christmas Mass, and a couple settled in front of us. They were definitely not members of our church, because if they were, they’d have said hello or known not to choose that pew and subject themselves to my family’s misbehavior. My sister gets restless in quiet situations, so at church, she’ll sometimes sigh loudly, clear her throat, fan herself with the missalette, and make proclamations like, “This is soooo boring.” Evidently, these new people actually wanted to listen to the Mass. (I don’t know why, since it’s the same every week, newborn Jesus or not.) That night Chris began with a combo of her sighing and chatting routine, and they kept turning around to shoot us dirty looks. Once my sister sensed their hostility, she began to clear her throat aggressively and fan the couple with her missalette. At first my mom and I felt it was our duty not to let Chris bother them, so we tried to quiet her by holding her hands, doing the “zip your lip” gesture, and pinching her legs ever so slightly. Nothing worked. Eventually, we gave up and just left her alone. The couple continued to turn and glare, and I couldn’t stop thinking to myself: Screw them. Not only is this a church, but it’s also Christmas. Aren’t Christians supposed to turn the other cheek? Next to me, my sister was humming, “Let there be peace on Earth.” I started laughing, because I knew it was never going to begin with us. At divinity school, I almost quit in the first two weeks because I was so overwhelmed and had what I later learned was called “imposter syndrome.” My friend Shannon and my advisor Lana forced me to stay. Over my three years, I took classes, wrote enough poems to put together a manuscript, did readings, sang, and interviewed poets of varying traditions on the intersection of poetry and faith. Though I kept my condo, and spent most weekends there studying, on the weekdays I stayed in several apartments I rented around the city. I loved being in New Haven again; it felt like I was finally repairing myself from my depression related to the R.A. job and reclaiming a part of my spirit that had haunted me. I also attended Mass on a regular basis. I found the familiarity of my fellow Catholics comforting. Most were funny, irreverent, and committed to social justice. They also prepared the best food. Before the end of my last year, I invited my mother and sister to one of 127

our weekly Catholic Masses. I’d written a hymn with another student as my thesis and my friend Primo was going to play it at the service. I wanted my mother to hear it, and I wanted my friends to meet my sister since I was always telling anecdotes about Chris and her antics. My mother and sister arrived at school dutifully attired in outfits I’d chosen for them the previous weekend. Though Irma King taught me to leave them alone when it comes to their appearance, I still need to remind myself their choices aren’t a reflection on me. But for special occasions, I enjoy playing hairstylist, dresser, and makeup artist. I long for this to be a familial bonding experience. With my mother, it’s one of the few bridges we don’t blow up or set on fire, but Chris doesn’t enjoy it when I treat her like my old Barbie dolls. When I attempt to do her hair or put makeup on her she ducks and jerks around worse than the prey in a whack-a-mole game. I didn’t realize the pants I’d picked for my sister would be baggy on her. But as we took a little tour and went to the refectory for lunch, Chris kept pulling the pants up from the crotch. I couldn’t quietly ask her not to because her hearing was an issue, and I didn’t want to be caught yelling, “Stop pulling your pants up by the crotch!” So after we were done eating we shuffled into an empty hallway and I pantomimed the dos and don’ts of adjusting them. I hunched in front of her like a third base coach signaling players. I mimed the symbol for “don’t” by crossing my hands in front of my crotch, and then pulled my pants up from the “wrong” place. Then I’d mime the “do,” which was to pull my pants up from the belt loops and give her a big thumbs-up accompanied by a ridiculously animated smile. I did this about 10 times. I hoped it had sunk in. Chris quickly dashed those hopes. As soon as the service started, and we stood to sing the first hymn, she was yanking her pants up from the crotch. So my mom and I held her hands, trying not to look like the control freaks we were. Then it dawned on me that we were in a chapel and surrounded by clergy, theologians, divinity students, and my friends. If we couldn’t feel comfortable here, where were we going to feel OK? So I let Chris’s hand go, threw my arm around her, and simply prayed to God no one was looking when she did it another 20 times.

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Final Admissions In July 2006 my father was in the ER because his blood pressure was exceedingly high. I stood outside his room, and as the doctor exited he said I could go in. I sat by his side and read my book. He asked, “Why do you read so much?” I shrugged. We’d been getting along for about five years, the longest period in my life, but he doesn’t know I overheard him tell the doctor the one thing he doesn’t want me to know: “I been under a lot a stress, doc, and I been drinking again.” I couldn’t believe it, but said nothing and drove him home when he was released. The next day, I called an addiction counselor for advice. He said I should inform my father that I know and tell my mother if he refuses to tell her. I called my father first. Me: How are you? Father: Totally fine. I’m back at work and my BP’s normal. Me: That’s good. I heard you tell the doctor you were drinking. Father: I’m done with that now. Me: Listen, it’s just a setback, we can get you help. Father: I don’t need help because it’s not gonna happen again. Me: For six months mom has said she thinks you’re drinking, and I’m not lying for you. Father: I told you, I’m done with that now. Me: You sound like Chris. Do you wanna tell mom or do you want me to? Father: I’m not telling her and neither are you. He hung up on me. I called my mom and told her, but when she confronted him, he lied. She didn’t leave him. She said she believed him. Which meant she didn’t believe me.

I didn’t see my father or speak to him for a year. Then it happened exactly like in the movies. It was July 2, 2007, and I was staying with my mom at the beach. The phone rang at 1:00 a.m. and it was her neighbor from home, saying my father had been taken by ambulance for “bleeding out.” I drove my mother to the hospital, over an hour away. He was in there a couple of days and I considered if I should call or visit. I didn’t. He was probably more miserable missing work than worried about his health, since he rarely sought medical attention. On the 5th of July my mom and sister were waiting at the hospital for him to finish his colonoscopy and endoscopy when suddenly, a gurney was wheeled by and my sister said, “There goes my dad.” The nurse told them he was unconscious and may have had a stroke. In the ICU, while my sister hid in the corner and stared out the window, my father was squeezing my mom’s hand and wouldn’t let go. The doctor put my father on an emergency helicopter to transport him to a hospital that specialized in strokes. He’d refused to fly since his discharge from the Navy 45 years earlier. En route, his condition worsened, and he was placed on life support. I called my mom from work to ask about the test and she updated me. As I drove the hour and a half to be with her, I imagined that the flight probably pushed him over the edge since, like me, he was also claustrophobic and afraid of heights. When I got to the hospital, I found my mom in a private waiting room with various family members. After an hour, my father’s doctor came in and asked if we wanted to try an experimental surgery. He said there was a slim chance the clot could be removed. My father could die on the table, and if he lived he’d most likely be incapacitated. The doctor told us to call him when we decided. Everyone left but my father’s brother and sister. The thought of my father stuck on machines for the rest of his life was unbearable. His brother said something like, “He’s my brother; he’s a great guy; if it were up to me, he should have the surgery.” I barely knew this man, since my father had disowned him for 25 years and they’d only recently reconciled. “If he survives, but has to live in some kind of facility, are you gonna visit him because I’m not.” He said nothing. Since this was a teaching hospital, and we worried we might seem insensitive, we gave the doctor permission for the surgery. Before my father’s siblings left, I asked if he’d been drinking again. They admitted he had. I asked if he told 130

Dick, 1966.

them we weren’t speaking because of this and his sister said, “Yes. He said he was never planning to talk to you again.” While he was in surgery I went to the waiting room to call a few close friends so I could tell them my aunt and uncle admitted the truth in front of my mother. But because I was in a hospital, I had to be really quiet, so I mostly whispered the word “vindication” before I elaborated. It reminded me of the day the Giants finally won the Super Bowl in ’87. My father was so ecstatic he spent the rest of the night calling all the people who’d mocked his favorite team. When each person answered he said nothing. He just laughed, and laughed, and laughed, and then hung up. Thinking of that story, I realized that in order to survive him, I’d become him; now I just wanted him gone. After my mom left, my cousin Maria and I went back to the ICU. My father’s nurse was there, and I asked why his leg wouldn’t stop shaking. She claimed it was normal. When she closed the curtain I started sobbing and tried to convey some of my thoughts to him. But his leg kept moving like it was one giant muscle spasm, like it was The Tell-Tale Leg. I interpreted this as Morse code that translated into: you are a monster; you wanted me dead and now I’m almost dead. It was like he was trying to break out of his coma so he could finally kill me. I was really shaken, and it dawned on me that a few days earlier, I wasn’t too angry to visit him—I was too terrified. I was worried he’d throw me out, like he had before. “Vindication,” my ass! It was clearly time to go. I nodded at my cousin, patted his forehead a few times, and we left. The next morning, my mother, Maria, and I were joined by a social worker, and we all stood witness as the doctor pulled the plug. We watched as my father’s breathing became increasingly labored, the infamous “death rattle” a cross between a snore and a severe asthma attack—he was gasping, almost drowning. I had to leave the room several times. I couldn’t bear it. I returned when it subsided, and then: He. Was. Dead. I stayed with his body longer than everyone else. When I exited his room with tears in my eyes and sat down in the hallway, my mom looked at me mystified. She doesn’t do crying. She studied me like she was an extraterrestrial who didn’t understand my strange human ways. Then, to my surprise, she knelt before me and put her hands on my knees, saying,

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“Are you crying because he’s dead, or because he was never a father to you?” I answered, “Both.” This experience doesn’t soften my mother for long. There were logistics to attend to, and she rushed through them like she was on fast-forward. Her behavior wasn’t out of the ordinary; it was just worse; she was methamphetamine widow. We agreed my father should be an organ donor. While my mom and Maria talked with the caseworker, I called some people with the news from a private waiting room. I quoted Jesus Christ Superstar to Primo, who knew how far from Christ-like my father was: “It is finished.” He quoted my sixth grade diary back to me: “Toothpick didn’t rise?” When I brought back lunch for us, Maria told me about the interview. Evidently, it was the first one the caseworker, who was from our hometown, had ever done. Josh: We’re almost finished, but the next questions relate to your husband’s sexual history. My mother: Oh, great. Josh: Did your husband have sex with animals? My mother: I don’t know; any particular kind? How’s your mom? Josh: Uhh, fine. Did your husband ever have sex with a man? My mother: Prob’ly not. Where ya livin’? Josh: Uhh, still in town. Did your husband ever have sex with a male in Europe between 1981 and 1989? My mother: He didn’t fly. I saw your sister at church, she still married? Josh: Yup, she’s got two boys. Did your husband ever have sex with prostitutes? My mother: Prob’ly. All’s I know is, I wasn’t having sex with him. Chris hadn’t been there for our father’s death. Watching him have a stroke and leave on a helicopter had been traumatizing enough. I was so busy helping my mother with the funeral arrangements I didn’t visit Chris for another two days. When I did, she was stuck on instant replay, as though continuously narrating the details of the stroke could help her process what had happened. She marked each sentence with a series of

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resigned shoulder shrugs, not understanding that I didn’t want to keep hearing about it. Chris: Well, Dad’s gone now, right? Me: Yup. Chris: He went flying by on the table and I said, “There goes my dad.” Me: Uh huh. Chris: He’s up there now, right? Me: Right. Chris: They took him away in the air, and that was it. Me: That was it. Chris: I’m not going back to that hospital, no way. Me: Nope. Chris: He’s not angry anymore, right Sister? He’s up there now and he’s not gonna make you cry anymore. Weeping, I dropped my head in my hands. She nervously plunked her arm around my shoulder and muttered some simple condolences. “You’re gonna be okay. I’m right here, Sister. I won’t talk about it anymore.” The next day was the wake, but because of the way my sister was obsessing at her apartment, I worried seeing his dead body would overwhelm her. I didn’t think she should go. Instead, I proposed, she could hang out with our former neighbors, Dottie and Neddie, who now lived across from the funeral home in our grandparents’ old house. Anyone who wanted to visit Chris could go there. My mom disagreed and wanted my sister with us. My mother won. She and I went together, and Chris arrived a bit later with a mix of staff and housemates. The plan was for her to spend the night with my mom and attend the funeral at nine the next morning. At first Chris seemed to be in her element—give her a room with mostly warm bodies and she’ll work it. My friends Shannon, Moe, and Dina looked out for Chris, visiting with her. Dina and her dad brought my sister some dinner and a few snacks. In the meantime, I shook hands, nodded my head, accepted condolences, and listened as my father’s friends and colleagues told me what a great man and chef he was. Some looked at me perplexedly, and I wondered if it was because my father had purposefully avoided talking about me. Suddenly, Shannon came up and whispered that 134

my sister was escaping out the back door. The staff from her home were leaving, as scheduled, and Chris was in hot pursuit. I stepped away from the line to find my sister, and my 13-year-old cousin Stephen followed me. I rushed up to Chris and asked her to please come back in, but she refused and pushed me away. She wanted to get the hell out of there. She tried holding onto the staff to keep them from entering the car, but I gently hugged her to me so they could climb inside. Then Chris grabbed the handles of the locked doors and pleaded, “Don’t go. I want to go home with you. Unlock the doors. Please. Please. Please. C’mon guys. Don’t go. I want to go home now.” Hoping to soothe Chris, one worker rolled down the window to talk, but my sister just reached in to try to unlock the door. As the window slid back up, Chris determinedly kept her fingers in its way, until they were squeezed in the tiny crack at the top. I eventually got her away from the car by doing my hugging and tugging maneuver. I felt like I was trying to hold someone back from retrieving a loved one from a fire. I tried to project a sense of calm, but inside, I was freaking out. I knew my mother was greeting people alone, and I knew she’d start wondering where we were. I didn’t want her to have to deal with this. I hoped to convey to Chris that I understood she was upset, but also, that she needed to stay with us. At the same time, I was furious with my mother for forcing Chris to be there at all. I wished my sister and I could escape together, with a great Thelma and Louise moment of running to my car, jumping in, and taking off for the open road. Instead, Chris stood behind the car to keep it from backing up. I became desperate. She’d lost enough hearing that I had to yell to be heard, and people were coming and going right near us. I worried that in order for the staff to leave, I’d have to use an amount of physical force that might harm my sister. So I directed Stephen to hurry inside and get Maria. When she took over, we finally got Chris away from the car so the staff could leave. I walked away to muster the strength and composure to re-enter the wake and spend one more interminable hour at my mother’s side. Out in the parking lot, Maria comforted Chris, who was crying. Later I heard my sister repeatedly refer to our father as “my daddy,” even though she’d called him “Dad” for decades. I imagine these events were like a time machine, that grief transported her into a state of confused regression. Yet even in her sadness and anger, Maria said, Chris continued to welcome 135

people in the parking lot by waving and saying, “Hello, darling.” Eventually, she was lured back into the funeral home with snacks. My friends sat with her while she had some trail mix. After that was consumed, I handed her my battery-operated Yahtzee game. I’d also put some word search puzzles and a Rubik’s Cube in the bag, but we didn’t need it. The game kept her quiet and distracted enough to survive the last half hour. Fortunately, for my sister and for all of us, the funeral was better. But since it was a high Mass, this meant we sang every verse of every song and also the non-songs were turned into songs. After the wake debacle, I was worried the extra length of the Mass would agitate Chris, so we asked Jackie King, a “relative” of Dr. Irma King and former manager of Christine’s group home, to sit with us in the front row in case my sister needed to take a break. That amended the situation. My family and I have never been great at comforting each other. There was no well-worn path of empathy for us to follow before my father’s death, and that didn’t change at his funeral. In the front of the church, we were on display, and I felt self-conscious and alone, sandwiched between my mother and sister, compressed by my own frustration. My mom likes the custom of holding hands while reciting the Lord’s Prayer. When the priest completes it, you’re supposed to lift your neighbor’s still-clasped hand slightly before you let go. When we got to that part of the service, I raised my hands really high, like we were back on the Matterhorn Bobsleds. It was a relief to make my mom laugh. When we followed the casket out of the church, Chris paused, raised her arm above it, and made the sign of the cross, and people laughed. My father would have disapproved, but everyone near us seemed as entertained by Chris’s defiant familiarity as we were. Employing the sense of humor that helped us survive him also helped us bury him. The burial was followed by a luncheon at the church hall where Chris, filled with “pasta and balls,” asked me for her present that, the day before, I’d promised to give her if she was good during the funeral Mass. I’d forgotten, so I had to think fast. I went to the table where my friends were sitting and asked if anyone had something they’d donate to the cause. They did not disappoint. We held a ceremonial Presentation of the Key Chains in which Chris was awarded one that had a tape measure on it, another from Vegas, and a third shaped like the Eiffel Tower. 136

My mother left a message on my answering machine later that evening. “It’s your mother. Call me. I found some strange key chains hidden in your sister’s pockets, and she claims they came from you. I told her she was lying because when the hell did you ever go to Paris?”

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part four “Make It Better”

Three of a Kind The morning after my father died, I sat up in bed and pronounced, “I’m free!” It was better not having an alcoholic dad than it was wishing I’d have a sober one. I no longer needed to waste my resources hating and blaming him because he wasn’t capable of more. I no longer had to collect interest on his betrayals. I could take them as a loss—write them off, if you will. And I’d be safe in the future, too. I’d never have to look after him if he were sick or intoxicated, or visit him in a nursing home, or feel guilty if I chose to take care of myself instead of him. The following months I did feel some residual contriteness about not visiting him in the hospital before his tests. To remind myself why I’d been afraid to, and to validate those feelings, I’d watch The Sopranos. Tony Soprano and my father shared some uncanny similarities: his exaggerated hand gestures, the imposing way he leaned forward, his stilted annunciation, the way his eyes narrowed into loathing and followed me when he was wasted, and his lack of introspection. Though my father was Polish, he knew some wise guys in the restaurant world and, because he was so angry with me the year before he died, I honestly worried when he was in the hospital, he’d called his mob connections and put a hit on me. I also had nightmares where he came back from the dead trying to off me. Tony Soprano was an asshole, but unlike my father, he was an asshole to everyone. In public, my father was more like Ralph Kramden in The Honeymooners, and my mother was his Alice. I wished other people could have known him like I had, so that I wouldn’t feel so isolated. Instead, his phoniness made it look as if I had Faulty Narrative Syndrome, and I hated him for that most of all. I wondered how my sister processed his loss. Was she sad, scared, or confused? It was hard to tell. She definitely mentioned him when she was

around my mother and me, saying things, seemingly at random, like: “Dear Doctor, thanks for helping my dad. It didn’t work.” On Thanksgiving and Christmas, she referred to him a lot. “Well, Dad’s not here. Who’s gonna cook now?” or “Well, Dad’s up in heaven so no presents for him.” When she and our mother and I visited his grave that spring, Chris delivered this belated eulogy: Mom should have let me put the cross on the casket. I was Dad’s favorite, his favorite son. I was in the Navy with him. No more stockings for Dad. He had a candy bar for 20 years. He can’t have sugar now, he’d go nuts. He’d get all hyper. No more Halloween candy for Dad. Remember when he fought with you, Sister, and he chased you around the house with the light? He was drinking a lot: on the first day, beer; on the second day, vodka; and then he rose from the dead. Can I tell Dad a bad joke? It’s about the fire and the monkey. Sister was gonna set fire to my monkey keychain when I took her cell phone. Dad used to call me every 15 minutes once. He’s up there now in the blue sky with the sun and the moon (she raised her fist). “To the moon, Alice.” Well, that’s it. No more stealing. No more fighting. No more Dad. When my sister finished, I noticed my mother had turned her face away. “Are you laughing or crying?” I asked. She replied, “Trying to figure out how she knew he drank?” The three of us sat together on a nearby bench. I was in the middle, my sister on my left, my mother on my right. Several rows away I noticed my mother’s maiden name etched in a large stone. The marker in front of us held the one we inherited from my father. Mother: I got three plots here; your father’s in that one, and the middle one’s for your sister. When I die, I want you to cremate me and plant me in the third one. If you get cremated, there’s enough room for you in there too; if not, you’re on your own. Chris: We can all be together forever, Sister. Me: Thanks, but I’ve got mine planned out. I’m gettin’ cremated and going to the beach. You know when there’s a full moon and 142

it makes that path of light on the water? Well, I want my ashes thrown on top of its reflection. Mother: Your father always liked to watch the moon on the ocean. Me: Yeah, I remember. Now seemed as good a time as any to talk with my mother about her life as a widow. I informed her I wasn’t taking care of her. I’d seen how responsible she felt for her own widowed mother with the daily visits, multiple phone calls back and forth, rides to the cottage, Saturdays to Mass, and trips to the doctor’s, grocery, and drugstore. I wanted her to know that, at age 67, she was far too young for me to take on a role like that, especially since she was totally independent before he died. The following week, she started going to swing dances and booked a bus trip with the church to New Hampshire. This new awareness of mortality had me concerned that my sister might not have a lot of years left, and I wanted to spend more time with her. For so long, I’d joined my mother in serving as Chris’s dietary police, but over the coming months, I decided to indulge her. (My father had used the same tactic to ingratiate himself into my sister’s life when he was getting back together with our mom.) If Chris wanted a soda and chips at a food booth, I’d say, “No problem; it’s on me.” If she tentatively asked for extra bacon at the church breakfast buffet, I’d encourage her. “Go right ahead, you only live once.” One afternoon, when we were on a family trip to the beach, I took Chris to an upscale coffee shop in Watch Hill, Rhode Island. The two of us shared an overpriced biscotti and an iced coffee. When I wasn’t looking she poured four fake sugars in our drink, but otherwise, it was enjoyable. We played crazy eights, and she beat me three out of four times. When I got tired of cards, I asked if she wanted to go back to the house or do something else. She surprised me by saying she wanted to stay out, so we went to a nearby consignment shop and—since she had 10 big ones burning a hole in her fanny pack—searched for something to buy. We moseyed down to the purses, and as soon as she saw it, she knew: the bag was large and white and had six colorful zippered Pac-Man pouches on the front. Chris loves pouches, and will stash one inside another inside another. I 143

knew just what she had in mind: this bag was the perfect holder for her collection of key chains. Later, back in my room, Chris discovered my Yahtzee game on the nightstand. I’d let her borrow it for several months when she refused to give it back after the wake. But I loved that Yahtzee game. It had gotten me through a lot of road trips and sleepless nights, and I missed it. At the wake, my friend Shannon jokingly imitated me: “I lost my father and my Yahtzee game on the same day. Damn, I miss that Yahtzee game.” So I eventually had my mom steal it back for me. When Chris saw it, she remembered that the one she’d borrowed at the wake had gone missing. So I did exactly what she would do in the same circumstance. I lied. I told her that the one in my room was a new one that I just bought, and she must have lost the one I gave her. Chris: How ’bout you get me a new one? Me: How ’bout we exchange your new bag for a Yahtzee game? Chris (after a long pause): I can just play with yours, right darling? Me: You promise you won’t steal it? Chris: I never do that. I promise I’ll give it back. Knowing she’d enjoy playing with it that day, and then hide it in a series of pouches to weasel it out of the house, made me smile. Then, picturing our mother looking for it and stealing it back for me again a few days later made me so happy I handed it to Chris. “Game on, Sister. Game. On.”

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Tomorrow, Tomorrow, and Tomorrowland Since our trip to Disneyland when I was in college, I hadn’t traveled further than Washington, D.C., for a long weekend with my mother and sister. But for years, my sister, mother, and father had taken an annual trip to Florida, and about eight months after my father died, I took his place. I didn’t feel like a daughter or a sister, but his surrogate, who was only included because he was dead and my mom wanted some help. I was going for five days, and they were staying for two weeks. I knew I could only handle that much time with them. I needed to retain the boundaries I’d established to ensure I continued to live my own life. I took a separate flight from my sister and mother, which meant I didn’t have to hear my sister announcing to the other passengers that she was sweating from her “under-pits”—just my mom’s recollection of it. We all arrived at the airport around the same time so I could help rent a car, and while my mom and I filled out the paperwork, I could hear Chris repeating the under-pit story to the people in the waiting area. Once I secured the key, they followed me in a straight line to the garage like obedient children. As soon as we checked into our condo, I channeled my father: I scoped out the kitchen, planned the menu, and went shopping for food. I wondered if he used to feel as frustrated as I did with Chris and my mom’s frequent bickering. When we went to a Disney-themed outdoor shopping mall, they would not let up. My mom hates to shop or spend money, but Chris, who loves to do both, kept stopping and querying about pens and key chains: “How ’bout this one? How ’bout this one? How ’bout this one?” That, and their overstuffed fanny packs, slowed them down, while my impatience propelled me to rush ahead.

Nancy and Chris, Kissimmee, Florida, 2008.

Food battles continued to be an issue, too. One evening we sat in the lobby and snacked on the free cheese, crackers, and sodas spread out on a table. Between bites, Chris kept explaining that this was only an appetizer to her real snack, but not a replacement, because an actual snack-snack would still be in her future. We ignored her. Back in the condo, though, my mother rejected these explanations, and they fought about whether Chris could snack more. One afternoon we took a short walk from the condo to a dinosaur-themed mini-golf course. My sister was excited because before we even started, the general manager, who’d been my father’s friend, stopped by the snack shed to greet us. Since I hadn’t been part of these family trips before, I’d never met him, but my sister called him “uncle.” He told Chris she could get her choice of any ice cream at the end of the game. My limbic brain went into regressive mode, and I thought, “What about me, Mr. Uncle? What about my fucking ice cream?” As we began golfing, Chris and my mom, who knew the course well, channeled the bloodthirstiness of the presiding polyurethane T. Rex. They cheered when the other’s ball overshot the sides. Any time my sister’s ball was close to a hole, she cheated by slowly dragging it until it plopped inside. When Chris or I pulled ahead, our mom got mad. The fastidious way she kept score made me feel we were in the Olympics. No one got any extra points or was allowed to try again. I worried that if I won she’d have me drug tested for steroids. I tried to stay above it all by giving them the same squinty, scolding look I’d used many years ago, when they’d mock me for getting gutter balls at the bowling alley. But I was still grateful when, after our mother won, we all got free ice cream. Chris and I shared a room, and she metaphorically pissed all over it to mark her territory. She decided the table between our beds belonged to her and moved my stuff without telling me. She confiscated and hid my socks. She stashed items she didn’t covet in a drawer near the bathroom. It took me a while to figure her system out. The first night, she’d already gone to sleep while I tiptoed around, hunting for my earplugs and eye mask. Everything else, she’d steal, and I’d find my belongings among the puzzles, CDs, and little stuffed animals she kept in her small mountain of plastic bags.

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Once I deciphered her habits, I was fine—until the night before I planned to take the rental car to Tampa to visit friends. Before I went to bed, Chris took the directions and my iPod that I’d placed on the dresser so I wouldn’t forget them. After I finally found everything, I decided to put them right into the car. Because I was a little nervous about driving alone, I had trouble sleeping. I was finally out when, around 5 a.m., Chris woke up and started to clear her throat every few seconds. Then she moved on to repeating, “Is she awake yet? She better not touch my stuff. Are you awake, Sister? I want a new pouch for my Mickey pouch.” She lectured on the finer points of pouches for another five minutes, then paused, leaned toward me, and whispered, “I think she’s awake.” Seething, I offered her three choices: either be quiet, go to the living room couch, or find our mother, who was usually up early. Instead, she increased her volume to muse about whether she’d get the Mickey Mouse sweatshirt she told her “uncle” she wanted. So I stood up and started throwing things around the room and yelling. When our mother rushed in to mediate, I yelled at her, too. I kicked them both out of the room, flung some of Chris’s stuff out the door, and slammed it. Then I lay there angry and awake for another hour, until it was time to leave. Even though I hugged Chris and apologized before I drove away, I felt awful. Here I was, off to visit a minister and a chaplain from divinity school, but after only three days with my family, I was again the angry teenager who’d executed the Slumber Party Massacre. On my last day there, we hung out at the pool. I sat in a chair attempting to concentrate on, I kid you not, that masterpiece of vacation reading, Faulkner’s The Sound and the Fury, while my mother, who’d been lounging in the hot tub, accepted a challenge from a five-year-old wearing a patriotic bikini with matching bandana. Her name, appropriately, was Star, and she said, “Hey, let’s see who can jump longer on one foot.” “OK,” my mom said, and I felt sorry for the kid, because clearly she hadn’t seen my mom play minigolf. My mom would’ve broken a hip before she got her ass kicked by a kindergartener. In one ear I heard them counting. In my other ear, I heard Chris, with her headphones on, intermittently chanting, “Kippy, kippy paw, kippy paw, kippy kippy paw.” She was slightly gyrating in her chair, and I was 99.9 percent sure that those were not the

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real words. Then again, I wouldn’t put it past her to have stolen the CD from a shaman. After a few competing rounds of the counting, jumping, and kippy paw, I gave up trying to read and listened to Chris’s CD more closely to find out what the real words were. I told my sister, “It’s Britney Spears, and she’s not saying ‘kippy paw’ but ‘gimme more’.” “I know that,” she scoffed. “That’s what I said. Kippppppy pawwwww.” A little later, a boy came up to us, took one look at my sister, and without hesitation asked me, “Is she kinda handicapped?” “Kinda,” I replied sarcastically. “How old is she?” “Forty-two.” “Dang! She looks so young!” I learned that my interlocutor was twelve years old and named Jesse. Jesse had a pretty thick accent, so I asked if he was from the South, like maybe Tennessee? He drawled, “No. I’m from Vermont. I jus’ like talkin’ this way.” And talkin’ he did. He hopped from one topic to the next, asking questions about Chris, informing me about this other girl in the pool who he thought was a “hottie,” and whispering that I needed to tell Chris not to go in the wading pool because some kids, now in the hot tub, which was thankfully chlorinated, had recently peed in it. What he didn’t comprehend was that in order for me to convey the urination warning to my hearing-impaired sister, I’d need to yell and add appropriate gestures: “Chris, don’t go in the wading pool (pointing at it and waving my hands in front of it while I scowled) because those kids (furiously pointing at them) just peed in it (squatting down a bit and pretending to pee)!” Jesse was determined to get Chris to swim in the big pool with him. Every time he asked her, she’d reply either “Huh?” or deliver a non sequitur, like “I want that Donald Duck key chain,” or “I’m having a soda with my lunch and you can’t stop me.” Then Jesse would look at me and say, “What’d she say?” I’d usually answer that I didn’t know, until, ready for a break from his artillery of asking, I lied, “She said she doesn’t want to swim right now.”

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With resignation he jumped in the water and joined the kids his own age, including the aforementioned “hottie.” For lunch, we went to a complimentary BBQ at another of the complex’s many pools, where I was surprised to see two men with Down syndrome, each with their families. As we walked by, one of the guys shyly glanced at Chris with downcast eyes. My sister, focused on the nearby buffet, didn’t seem to notice. We chose seats near the other guy with Down’s, and I kept discreetly miming to Chris that she should tap him on the shoulder. I tried to get my mom to talk to his parents and see if they wanted to arrange a playdate with him. They both ignored me. I fancied a meeting of Down syndrome minds, perhaps a showdown. I wanted them to play minigolf and sing “kippy paw” together. This guy was much quieter than my sister, and also younger. He only spoke when adults asked him direct questions. When he came back from the buffet, his dad carried his plate, and his parents helped him sit. He ate slowly and methodically (Chris does this as well), but his mother actually turned his plate at times so it’d be easier for him to tackle each portion of food. The parents seemed uptight and completely focused on their adult son, like they had no relationship to each other, and the son was resigned to their coddling. I leaned over and jokingly whispered to my mom, “That guy needs to get laid.” “The son or the father?” “Both,” I said. Later, while they were taking me to the airport, I was still thinking about that family. Unless we were at something like the Special Olympics or Christine’s former school events, I can’t remember a time when we were in public and not the only family with a member who had Down syndrome. So I asked Chris, “Remember that guy at the pool?” She said, “The one who’s like me?” I felt a rush, like she got it, like she understood on some level that she had Down syndrome and recognized that other people had it, too. But when she quickly added, “The one from the hot tub?” I knew she was talking about Jesse. And she was absolutely right. Chris is more like a chatty, vivacious, inventive 12-year-old boy than a

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quiet adult male whose parents dote on him. If the meeting I’d dreamed of had happened, she’d have verbally bulldozed that guy and probably scared the shit out of him. Jesse was totally her speed, adopting a new accent the way she’d adopted a new identity as Dr. Irma King. I imagined them joining forces and hitting the open road, taking a bus across the country, causing trouble, lying, stealing, and telling stories to everyone they’d meet. A verbose Bonnie and Clyde, they were two expert marksmen, not shooting from the hip but from the mouth.

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Dianne at the Robert Frost House in New Hampshire, 2010.

Out Singled It ’s Christmas Eve. I’m at the library. I quickly grab two movies: a holiday love story with a guaranteed happy ending, and the latest Pixar offering. It doesn’t matter if they’ve seen them before. Repetition is good. Repeat after me: “Repetition is good.” The librarian asks, as she hands me the kids’ movie, how old mine are. It’s for my sister, I say. She looks at me quizzically. I offer no explanation. I have no husband. I am not a wife. I have no children. I am not a mother. I have no nieces or nephews. I am not an aunt. I have a mother who loves Christmas and romantic comedies. I am her daughter. I have a sister who will want to go to bed before either movie is over. I am her sibling. I’m lucky to have family to spend holidays with, lucky that my mother and sister are still alive. But looking forward, I know I’ll likely outlive them, and I dread receiving pity invitations. I’ll hear the hesitance in last-minute phone messages: you’re more than welcome. There was a time before my high school friends married and/or moved out of town that I was the grateful mascot on holidays and a distraction from their annoying siblings and parents. I sat in warm rooms. They fed me. I ate. Now, as these various couples’ children have started college, I’m still in my condo, sitting in a red, leather chair against a window with a twenty-year view of the past. Endurance became a habit, a part of my routine like a daily walk or emptying the dishwasher. I vow this year to do something differently. The sky fights its way from gray to blue. There are 33 minutes of good light left before I have to turn on the outside lamp and leave to meet them. My mother and sister will be waiting for me in a restaurant the next town over. As usual, I’ll be on time and they’ll be early. In the car “Winter Wonderland” comes on the radio. Chris and I listened

to the Johnny Mathis Christmas album year round on our Mickey Mouse record player, but we loved “Winter Wonderland” the most. We acted out the whole song in Chris’s bedroom, even the part where the couple gets married by Parson Brown. She, of course, was the groom, and I the bride. It’s the closest either of us has ever come to holy matrimony. My mother loved Johnny Mathis, too, sometimes, it seemed to me, far more than she loved my father, with whom she was perpetually fighting about money, and how little he helped around the house. When one of Mathis’s slow songs came on the radio—“It’s not for me to say, you love me . . .”—she’d proceed to the center of the kitchen floor, raise one arm, and place her hand in that of an invisible partner. I wondered who this unseen dancer was to her: the tremor of a voice coming from a radio, a wish, a dream, a ghost? As the song continued, she lifted her other arm to her mouth, with the backs of her wedding and engagement rings facing out, and she’d close her eyes and turn in slow, hypnotic circles. Chris and I watched. As she turned, our mother intermittently blocked the light from the ceiling lamp, and her shadow traveled across the island we were leaning on. In these years when I witnessed my mother’s loneliness within her marriage, I was increasingly drawn to figures who lived their lives without ever tying the knot: Thoreau, Dickinson, and Van Gogh. Certainly I admired their talent, but because I assumed singlehood was my own future, I thought a lot about the standard inclusion in their bios of “never married.” Was being single part of what allowed them to live the types of creative lives to which I too aspired? Could a person be single their whole life and be happy? In a letter to his brother, Theo van Gogh wrote in 1880, “There may be a great fire in our soul, yet no one ever comes to warm himself at it, and the passers-by see only a wisp of smoke.” * My mother says her best years with my father were early, when they were dating and newly wed. I’m glad they were in love, but distressed that this narrative means my sister and I put a damper on that. Later in their marriage there were times when they’d still tease each other and could make the other laugh, but overall, they seemed to function best as housemates, * Irving Stone, and Jean Stone, Dear Theo: The Autobiography of Vincent Van Gogh (New York: Plume, 1995). 154

spending most of their time without each other. I intuited from them that I could, too. The only other hints related to my mother’s romantic longings were when she watched her soaps. During the make-out scenes, my sister would giggle, point at our mother, and oooh and aaah until, annoyed by the interruption, she commanded Chris to shut up. My sister knew she was seeing something illicit, but I have no idea if it was titillating to her in any way. Both my mother and I usually felt the need to safeguard Chris from anything overtly sexual, because we saw her as a child who wouldn’t understand, and we wanted to avoid explaining it. When we went to see the movie Airplane and the screen showed a woman’s naked breasts, my mom and I both covered my sister’s eyes as instinctively as you might slam on the brakes and throw your arm across the person in the passenger seat. During An Officer and a Gentleman, we shielded her so much we should have just made her wear an eye mask. But Chris herself was not particularly shy, as I learned firsthand when working summers for our region’s recreation department. I chaperoned dances, assisted at trips to the bowling alley, and rode along on the bus with Chris in attendance. Supervising got tricky when she realized the high seats on the bus prevented me from seeing her make out with one of her pals from school. After a trip to a Red Sox game, the guy Chris had been kissing strode confidently over to my mother and asked for my sister’s hand in marriage. My mom told him, “You can’t have her hand or any other part of her.” When Chris was 25 and living in her first real group home, she met the boyfriend she had for many years. At 6 feet 7 inches, he towered almost two feet above Chris. Fittingly, his surname was Tree. They lived on separate sides of a duplex, and I wondered if they were finding secret ways to be alone. I’d prod her for details, “Do you kiss him? Do you love him? Are you behaving?” Her only answer was giggling. After a couple years they were moved to separate residences, and I heard he took her on a fancy date. He picked Chris up in a limo, and they went to dinner. But the longer they lived apart, the harder it became to maintain the relationship, so they mostly saw each other at dances, the Special Olympics, and bowling. When it finally became too hard to keep in touch, the relationship fizzled out. Chris was so heartbroken that a week later, she 155

went to a dance, met another guy, and within two hours, declared him her new boyfriend. Though they only see each other at regional dances, she still considers him her beau. I think, as is perhaps also true for my mother, it’s more important for Chris to have a dance partner than a soul mate. No one has ever expected Chris to get married, but everyone and everything around me—my extended family, the Catholic Church, media, advertising, culture, literature, commerce, and my friends—informed me a female was meant to get married, and have kids. Most people I know have done just that, with the exception of a few friends, Uncle Bob, and the nuns in elementary school. I remember when Chris and I were six and seven and some older boys in the neighborhood asked us if they could see our underwear. My sister was willing, but I stopped her because I knew it was wrong. I knew this because when I’d shown mine to my friend Andrew at school a few months earlier (he hadn’t even asked), the nun was none too pleased and gave me a little speech about how God expects young girls to behave. By sixth grade, the Sisters didn’t seem to care when I started a Shaun Cassidy fan club. My female classmates and I ate our lunches around one of his album covers propped up by a lunchbox. In my twenties and thirties, I dated some, but nothing took. There were times I wanted someone to want to marry me, but I’m not sure I ever actually wanted to be married. Any kind of commitment feels claustrophobic to me, and I used to berate myself for this, especially once I hit my early 40s. I treated singleness as my own personal disability. I wonder if I did this in order to be “special” and therefore, finally and truly equal to my sister. Or if the ways my parents failed to love and validate me caused me to crave that, whether or not I was able to reciprocate it. On the more practical side, in frustration I’d rant at the injustice of joint tax returns and people being covered by healthcare benefits from their partners. I would muse that single people deserve recognition as a marginalized group, that I was a gay man trapped in a woman’s body, or a failed heterosexual. But mostly my isolation was intensified by the fact that I didn’t know anyone like me to discuss all of this with. But by fifty, I’d become fed up with my whining, and would comfort myself by saying, “We all just end up dead anyway.” This helped. So did my memory of sitting with Dina’s mom at her kitchen table and telling 156

her I was freaking out about being 17. She told me that being middle aged was so much better, because you could do what you wanted and say what you wanted, and you didn’t care anymore what other people thought about you. She was right. For so long, even though people considered me normal, I believed something was wrong with me. In contrast, many people think something is wrong with Chris, who knows she’s normal. Typically, when she is able to follow a routine, her spirit is open, and she’s happy to live in the moment, whether she’s being a sister, a son, a credentialed physician, or—as she sometimes claims to be—engaged or already married with three husbands and fourteen kids. We’ve both used our imaginations to bear false witness. I told myself lies that constrained me and she tells lies that sustain her. She boldly owns her feelings by saying things like, “You know what I say? I am not in the mood for love.” And if our mom makes some blunt comeback like, “Good, cause ya ain’t getting any,” Chris, unlike me, has been more successful at individuation because she has always been wise enough to ignore her.

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Hear, Here One year at the Special Olympics, Amy, a new staff person at my sister’s apartment, decided to get Chris’s teeth, ears, and eyes tested. She bought, with my sister’s money, some very expensive prescription glasses and a case. My mother, who’s in charge of my sister’s medical regimen, was livid. She bawled the woman out and thereafter referred to her behind her back as “that jerk, Amy.” She also contacted the Special Olympics to ask who conducted these tests, if they were legitimate, and what the results were. No one ever got back to her. When I found out my mother had confiscated the glasses and the case, I asked her if she’d even let Chris try them. She barked, “Someone said your sister needed glasses in high school, but I get her tested every year and they say she doesn’t need any goddamned glasses. Plus, ever since she had her cataracts removed, she’s fine.” There are certain lines you don’t cross with my mother, and my sister’s health is one of them. I share a lot of my mother’s concerns, and I have learned to look out for Chris’s health, too. When we were young and my sister was heavier, I became as much a dietary dictator as my mother. Chris understandably hated this. As I aged and thought more mindfully about my own health and eating habits, I again began trying to influence what Chris was eating. I created a list and encouraged the staff to buy seltzer or organic low-sugar juices instead of soda; raw sugar or honey instead of aspartame; eliminate processed foods; and to avoid aluminum because it was linked to Alzheimer’s. Other people often want to indulge Chris with food. If someone says, “Oh, just give it to her. It’ll make her happy,” I truly don’t believe they see her as fully human. They see her as a person whose disability makes her health unimportant, someone to reward with treats because they feel

sorry for her. They might as well be saying, “Oh, just let her be four feet eight inches tall, weigh 200 pounds, and die of a heart condition.” They don’t understand our place in her life or her place in ours. I want her here as long as possible. Chris isn’t going to voluntarily eat fewer cookies or less bacon to prevent obesity, reflux, high blood pressure, or diabetes. She can’t understand what these conditions are, let alone how to avoid them. We are bossy and controlling because of our love, though it usually looks like tough love, without the love. Currently, though, Chris and I have switched places, and she gets a kick out of reminding me of this. She’s so skinny you can see her ribs (part of her success is her thyroid meds), while I’m built almost exactly like my grandmother on my father’s side. Rubenesque is the nice way of saying it. Depending on my stress level, I gain, lose, and regain the same 30 pounds. Chris is aging a lot faster than I am. Statistics say her life expectancy is not as long as mine, and that scares the shit out of me. She has many more wrinkles and spider veins. She moves slower and gets easily fatigued. She has forgotten how to say and write parts of the alphabet and how to spell many words, including my name. With each passing year she lost more and more of her hearing. I found this last loss torturous. We could no longer share so much of what we used to enjoy as sisters, like music, movies, and mocking our mother. Chris could still let us know what she wanted, but we couldn’t communicate with her. She became withdrawn and unable to be playful, and, because she was stuck in her own world, her auditory processing became much worse. She was even less self-aware of her volume, and probably thought that, when she told us she was being quiet, she really was whispering. If we tried to watch TV together, she talked so much I couldn’t hear the actors. She couldn’t even hear me asking her to be quiet. When I complained to my mom, she insisted Chris was fine. So once, when the three of us were together, I muted the TV as a test, to see if Chris noticed. She had no clue. My mother then said it didn’t matter because Chris could read lips (she couldn’t). She did know a little sign language, but we didn’t. Plus she’d often make up gestures and pretend they were legitimate signs. My mom adapted to the situation in her typically unconventional way 159

by developing an unsophisticated clapping system to get my sister’s attention. Worse still, Chris clapped back. They were like a seal show at Sea World. My mother never conceded to the fact that my sister only noticed the clapping when my mother was standing in front of her. I fought with my mom about it repeatedly, and she let slip that my father used to argue with her about it, too. Since he and I hardly agreed on anything, you’d think she’d listen, but I think she felt ganged up on. The ear doctor we’d seen as kids, who was now almost 80, claimed hearing aids wouldn’t work for Chris, but my research suggested they might. I decided I’d better attend my sister’s next ear appointment. I knew we were in trouble as soon as we arrived, because though Chris smiled and waved at the doctor, he didn’t smile or wave back. Then he asked Chris a question, she answered incorrectly, and I could tell he assumed it was because of her disability and not the fact that she couldn’t hear him. He did register that Chris had some hearing loss, but claimed, without any proof for his assertion, that no devices would work for the type he assumed she had. Instead, he had Chris come in for frequent appointments so he could clean the wax from her ears, which she hated, and prescribe steroid-based eardrops that, I later learned, deteriorated the skin in her ear canal. As the ear cleaning got underway, Chris was clearly in pain, and became more and more agitated. A staff person from the group home was also with us, which seemed intrusive, and I resented her presence. When she tried to comfort Chris, my sister wanted none of it. My mother tried next, but Chris waved her away and pointed at me to come over. I talked soothingly to her and held her hand. She wanted me to save her from the doctor’s cleaning, but because he’d insisted that it was the only way to help her hear a little more, even for a short time, I got her to stay on the table. When Chris started to cry my eyes welled up, too, and when we finally left the office, I was ready to fire the doctor and take Chris to someone who could actually help her. It wasn’t easy to convince my mother, who worried about angering him. She cares about my sister’s health, but becomes deferential before men in roles of perceived authority. I also think she didn’t want me to be right. Still, when I booked an appointment for Chris to have her hearing tested at the local university clinic, my mother agreed to go. The clinicians gathered 160

some actual data and were optimistic that hearing aids could help Chris a great deal. We’d need to find an M.D. to write the prescription and the octogenarian, condescending, out-of-touch quack refused to do it. After more arguments, I finally persuaded my mother to formally sack him and have Chris’s records sent to a new doctor who specialized in patients with disabilities. My sister loved her, and I loved her, too, because she agreed to order hearing aids. And they worked! Two days later, when Chris was over our mom’s house, we talked on the phone for the first time in years. She laughed, and giggled, and made jokes to get me to laugh. She sounded 10 years younger. She told me she was going to lock our mother outside in the shed. I heard our mom yell from the background, “I’m in the bathroom and I can hear you!” And, because Chris heard her, she responded, “Yeah, the old goat is on the pot.” I asked my sister if she liked the hearing aids, and she said yes. When my mother picked up the other line to tell me Chris had been listening to music and singing and dancing all day, I cried with happiness. It was the one and only time I wished my father were back from the dead, because my sister’s amazing revival would have been a victory for him, too. When Chris and my mom and I got together at the beach not long after, we played the Carpenters’ greatest hits like old times. “Yesterday Once More” came on, choking me up as usual, but we stood together on the screened-in porch belting it out for the whole neighborhood to hear. Being able to sing with my sister formed a conduit over the abyss I once felt between us. On a personal level it was like watching Lazarus rise from the dead. And I wondered what could be resurrected in my own life. For now, I was just satisfied we could once again lob our faux annoyances back and forth at each other like a ping-pong ball. Me: Shut up. Chris: You shut up. Me: No, you shut up. Mother: Both of you. Shut up.

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Chris + Dianne out for lunch, 2014.

Agency For over two decades, my sister lived in several group homes and supervised apartments, all of them about 20 minutes from my mom and me. She shared each place with one to three housemates and a rotating 24-hour staff. I know it has been good for Chris, and for our family, that she enjoys some sense of freedom. But it has been hard to give up control and trust she’d be kept safe, especially since, on some occasions, I’ve learned she wasn’t. People with developmental and intellectual disabilities like my sister are more vulnerable to abuse. My mom and I do our best to protect Chris, but we also depend on the agencies that serve her and the employers who hire staff to safeguard her. Two men with intellectual disabilities have sexually abused my sister in the workplace on at least two separate occasions. My mother never told me about the first incident until the second one occurred ten years later, because she knew I’d be livid. When she relayed the details of the first, some of the important facts were lost. “Remember that guy who wanted Christine’s hand in marriage? He brought Chris into a back room at the grocery store where they worked and put his hand down her pants and also made her touch his ‘hose.’ That’s what your sister called it. I reported it to the Department of Mental Retardation, but they didn’t care. Nobody cared. It was client-to-client they said. So they fired Christine, but he kept his job.” As she predicted, I was furious. When I asked my sister what happened, she didn’t remember much. But she did answer my questions about the second incident. “What happened at work with Steve?” “He was touching me.” I shouted, “I am totally gonna have him arrested!” Then I took a deep breath and pushed for more info. “Where did he touch you?”

Chris took her hands and quickly tapped her breasts and then reached around herself and tapped her butt. I thought: where does this asshole live? But instead I demanded, “Did he kiss you?” She rolled her eyes and looked at me like I’d asked the stupidest question in the world, “No way. He’s got a girlfriend, you know.” I hoped she was able to brush the whole experience aside as painlessly as her response suggested. But it’s hard to know, and I worry about her ability to advocate for herself. If she was naïve enough to be led away by two horny, intellectually delayed guys, and unable to ward off their advances, what else might she be subjected to in the future? No wonder my mother had Chris get Norplant when she moved out. My sister had to sign a form in Connecticut that said she needed to be on birth control. My mom didn’t want my sister to get pregnant because she knew Chris wouldn’t be capable of raising a child. Statistics reveal that at least half of all women with Down syndrome ovulate and are fertile, and between 35 and 50 percent of children born to mothers with Down syndrome are likely to have trisomy 21 or other developmental disabilities. For well over a century, state laws across the U.S. mandated sterilization for people like my sister. Many states still have laws that control the availability of procedures such as tubal ligation or administering birth control to women who have an intellectual or developmental disability. My mom didn’t get Christine’s tubes tied, and I don’t support that procedure for her, either. But when I think about how my sister typically sees herself as “a boy and a girl, both”—not “a man and a woman, both”—I’m struck by how young she seems, and birth control clearly was the best option. As sole guardian, my mom has control over many of the major decisions in Chris’s life, but in other ways, we are all at the mercy of the agency that runs her home. They are responsible for hiring and firing staff, and we have no influence. Nor are we privy to a person’s employment history, qualifications, and experience. Depending on the home, some workers quit on a regular basis, and the lack of consistency can be challenging for my mom and me, as well as for Chris. My sister is easily attached to people, and flexibility is tough for her. I’m appropriately cordial to the workers when I pick up my sister, but I’ve never felt comfortable with this arrangement. When Chris first en164

tered the system, college kids and retired grandmothers often took the jobs and brought a playful energy and hominess to the space. Now, depending on the agency, there seems to be three main types of staff: professional, incompetent, and codependent. I like the professionals best. They make sure, when I come to greet my sister, she’s ready and waiting with her money, meds, IDs, and appropriately attired for whatever we plan to do—no sweatpants for a baptism, for instance. Their presence is minimal because they understand that my sister and I can communicate directly. The incompetent folks have often done nothing to help Chris get ready, and are focused on something nonwork-related, usually their personal cell phone. When I finally get their attention, they are rude to me for interrupting, blame someone else for the fact Chris is not prepared, and are dismissive toward my sister. The worst are the codependents. They hover around us, answering for Chris when I ask her a question, or talking about her as if she’s not there. They tell me how to deal with my sister’s idiosyncrasies with strategies I’d previously shared with them. When it’s time to go, they smother her in a way that encourages neediness: “I’ll be right here when you get back, Chris.” “You’ll be fine with your sister.” Why wouldn’t she be fine? But in 2012, when my mother passed along news that a staff person named Ronnie had shoved and yelled at Chris, my exasperation turned to anger and worry. A report was filed with the Office of Protection and Advocacy for Persons with Disabilities (OPA), and OPA allowed someone at Christine’s agency to conduct the investigation, bringing back a verdict that the abuse was unsubstantiated. We attended a meeting with the team, which included the woman who handled the investigation, the head of the agency, the agency’s nurse and behaviorist, the group home manager, and Christine’s employment supervisor, Martha, whom we’d invited. Each person gave a short report about the incident and what he or she knew. Then we were forced to endure a long presentation by Tracy, the behaviorist, who had an unhealthy relationship with the graph feature in Microsoft Word and presented her data about my sister’s recent behaviors in pies, columns, lines, and bars, with days and times my sister got up early, acted out, and was considered manipulative. All of it proved, she maintained, that my sister was not a victim, but the problem. Instead of seeing Christine’s new behaviors as a reaction to the abuse, she recommended 165

antianxiety meds. She seemed to think it’d be better to numb Chris than to train the 24-hour staff to do the job they’d been hired to do. Fortunately, Martha made it clear that aside from Chris’s ongoing kleptomania, she was typically terrific at work, and had none of the issues the behaviorist had catalogued. Martha asserted that she and the staff where my sister was employed had witnessed continual problems with my sister’s house staff. They’d had to report Ronnie and others on several occasions for being late, for not walking my sister into the building as required for drop off and pick up, for throwing away items Chris received as gifts, and for verbally abusing or ignoring Chris. My mom and I were grateful for Martha’s advocacy, but it had little impact. The resolution at the end of the meeting was that, because the report had declared the abuse unsubstantiated, Ronnie could return to her job. Perhaps Ronnie was emboldened by not being held accountable. Soon after, she again shoved Chris into her bedroom, closed the door, and threw her keys down the hallway. She was suspended from the job during another investigation. Despite our complaints, the same agency employee was charged to conduct the investigation and write the report. OPA could have chosen to investigate, but they didn’t bother. They label many abuse cases “unsubstantiated,” too, and we heard that this is a common result when a staff person’s words are up against those of individuals with disabilities. The deck is stacked against people who can’t always articulate what’s happened as accurately as a worker. While the second investigation was underway, the house manager implemented a new policy, presumably because the staff feared that any contact with Chris would get them accused of physical abuse: Chris wasn’t allowed to hug any staff person or even pat them on the back. As soon as she approached a worker, they were instructed to put and hold their arms vertically in front of their chests. Some at least allowed Chris a high five, but most told her she wasn’t permitted to touch them and sternly asked her to move away. She was treated like a pariah, and felt rejected and abandoned on a daily basis in her own home. Chris wasn’t capable of reasoning her way into alternate strategies. She didn’t have a counselor to go to, keep a journal, read self-help books, do daily inspirations, call a trusted clergy person, or text friends to give her

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advice. What she had was the hope she could fix what was happening by speaking the language she spoke best—affection. Since my sister didn’t understand this new rule, she’d try to be even more demonstrative. That only made things worse. When OPA went over the report of the second investigation the agency sent them, they again decided Christine’s case was “unsubstantiated.” Just like the first time, they could have gone into the home and done their own research despite the findings of the report, but didn’t. This meant Ronnie would be allowed back in my sister’s house. She’d also be able to stay at the home overnight. Alone. My mother and I pleaded for the agency to protect Chris by adding another staff member with Ronnie for overnights. This was denied. On the day Ronnie was scheduled to return to work, my mother was away in Rhode Island, so my cousin DeDe and I planned a sort of “kidnapping.” I called my sister’s house number and left a message that I’d be picking Chris up around 7:30 p.m. for the weekend. We showed up with an ice cream sundae, helped her pack some items, and brought her to my condo. After I got her settled in bed, I was a wreck. I’d had other difficult experiences that year: the downstairs of my condo had a mold infestation and was gutted; then I found my boss of 15 years on the floor of her office with what she thought was mushroom poisoning but was in fact the start of a massive stroke that she died of a few days later; at my next job, I was sexually harassed by my supervisor, and because of that I’d developed a bunch of strange psychosomatic health issues, and quit. Now I was unemployed, scared sick for my sister, and unsure what help I could provide. Even though it felt good to have her safely at my place, I wept. I didn’t want to bring her back to the home at all, but I also knew once Monday came, she’d want to keep her routine. I wondered if it was time to have her with me permanently. I’d always figured, within the plotline of my life, one day I’d be responsible for the care of my sister, but it scared me. As a stopgap measure, my mother and I spent the next few months taking turns housing my sister the nights Ronnie worked. But we didn’t feel we should do this forever, and the agency wasn’t honoring our pleas to remove the woman, so my friend Shannon, who worked for The Arc, served as our advocate. She reminded the agency that Chris pays her part of the

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rent, bills, and food, and a portion of the salary of each worker. Shannon also insisted that Chris needs to feel secure in her own home, and this should supersede the rights of any worker, especially one who’d abused her twice. The agency finally agreed to place Ronnie elsewhere. I was equally relieved and upset, worried that this worker would commit the same abuses at her next placement, but the union rendered our family powerless in these decisions. A few weeks later the supervisor at Christine’s house, who’d concealed a previous arrest record, was fired when her own misconduct was exposed. (We weren’t told what it was exactly, but it wasn’t related to my sister). All through these dramas we kept asking Chris if she wanted to move. At first her response was always “No,” but eventually it became, “I don’t know, maybe?” And then it switched to, “I think so, yes.” By then, we were conflicted, because the atmosphere had improved in the house. The new supervisor had been at the agency a long time. She allowed hugs, returned our calls, kept my mother in the loop, made sure people followed the rules, and didn’t track my sister’s every move. But then I got a call from the agency telling me Chris was at the ER. During the shift change that morning, the three staff people on the premises violated policy and left my sister and her three housemates alone in the van. One of the housemates used her Game Boy to smash my sister’s head three times with such force that Chris had to be rushed to the hospital. I drove there as quickly as I could. Chris had a huge bandage wrapped around the top of her head, two black eyes, and red marks on her neck. There was blood on her face, shirt, and jacket. The staff member who brought my sister to the ER offered no apologies or explanations. She just sat next to my sister and looked at me with cold defiance. I knew she was at fault for my sister’s injuries, not the woman who’d hit Chris. All the staff knew this housemate had emotional issues that caused her to yell, swear, and physically act out, seemingly at random. I asked the staff member to move so I could sit next to my sister, and when she didn’t, I demanded she leave altogether. She just glared at me. I’d been walking on eggshells for months, worried that if I upset one of Christine’s caretakers they’d be even worse to her. No longer. Fueled by this woman’s lack of compassion, decency, deference, and professionalism, I began to raise my voice, insisting that she was required to leave because 168

family supersedes staff in these situations, and kept at it until I noticed my sister’s face. I realized how shaken Chris was—not just by what she’d already undergone, but also by her fear of my reaction—my job was to comfort her. I pulled a chair in front of her, put my hands on her shoulders, and pulled her close, then turned to the staff woman and calmly asked her to call the supervisor, who I knew would tell her to leave. It worked. Giving me the look of death, she handed over my sister’s big, white, medical binder and exited the scene. I breathed my first sigh of relief. Then my mother entered, and a nurse escorted us to a room. We started interviewing Chris like attorneys, and I taped it using my smart phone. Me: Who hit you? Chris: Mary. She cracked my eye, and now I can’t see. Me: You can’t see?! Chris: Sure I can. I’m Dr. Irma King; you know that. It was very difficult to get a consistent story out of Chris, and our fits and starts reminded me of the old Abbott and Costello routine “Who’s on First.” But her most coherent answers, repeated many times over, let us know that she’d been sitting in the front seat, that there were no staff around, that she was hit three times by her housemate, that she was “dripping” (which meant bleeding), that she ran in the house, and that she was brought to the hospital. When the doctor came in 30 minutes later, my sister was relieved from “the stand.” Chris offered him her typical, “Hello, Devil,” then looked at me and said, “Yeah, he’s a handsome devil.” He removed my sister’s bandage to examine her three, one-inch gashes that were surrounded by bruises. One required stitches. As the doctor sewed her up, she serenaded him with “Love Me Tender.” Once he left, all Chris wanted to do was go home. I drove my sister to her house because my mother had a doctor’s appointment. She was mostly worried about lunch, because she knew the new supervisor was making ham and split pea soup at Chris’s request and didn’t want to miss it. Her main concern, though, was cleaning the blood off her bowling shirt because, no matter what, she was going to that alley at four o’clock. The washer was in the downstairs office, and when we 169

walked in, Tracy, the behaviorist, and the nurse were there talking. They said hello to Chris, but offered no “I’m sorry this happened” to her, or “This will not happen again, and we are responsible” to me. I was flabbergasted. I’ve interacted with managers at restaurants who were more apologetic for having sold me a soggy lemon meringue bar! As my sister went upstairs to help make the soup, I stayed behind. With Chris out of earshot, Tracy and I went at it for almost an hour. I couldn’t help but raise my voice as I dismantled her ridiculous charts, her therapeutic jargon, and the failures of the staff to put the residents first. She said she couldn’t understand my anger and suggested that something was wrong with me because anger was not the proper response. I’d just spent two hours comforting my bloody sister in the hospital, so when Tracy said this, I decided there was no sense to engage, and instinctively pivoted to a new defense, silence. Now she was raising her voice to relay the following: my family purposely lies; my mother’s too controlling; my sister needs medication; and again, I had no right to be angry. I continued to quietly stare. Then I leaned back and in my best, calm, therapy voice interjected, “It sounds like you might be angry, Tracy. Is that an appropriate response?” And at last she was rendered speechless. It took several months, but we finally found a new supervised apartment for my sister. Though I was happy and relieved, I was also saddened, because while I’d been nearby Chris for years, her new place was over an hour away. I was mad at myself for not taking more advantage of our close proximity. We’d been having fun together, and though it’s selfish to admit, I liked that she needed me, that I could provide her with nurturing on our shared walks and sleepovers and lunches. Awfulness aside, it was an oddly special time. Because I felt a lot of my sister’s recent behaviors had to do with the many changes in her house, I wanted to make sure her latest transition was acknowledged. Chris would be moving to a new region, which would separate her from people she’d known for years, some from her first school at age three. We had a little party and a cake with people from the agency and another party at her last week of bowling. She would bowl again, but in a whole different part of the state with all new people. So far, Chris’s recent home has been a good fit, and part of me is relieved 170

to realize this was not yet the chapter in my life where I need to take care of my sister full-time. I’ll still be called upon to advocate for her in the future, to make sure she’s safe and content wherever she is. She’ll always be vulnerable to the flaws in the system, as will I, since I have to work through that system to access her. Though part of me longs for her more constant companionship, and worries that it won’t happen until she’s sick and dying, I know that for now, we both benefit from our independence. Even though we’re physically apart, I feel we’re emotionally following paths that are finally curving back toward each other. One time, in the midst of all the stress, we’d had lunch, gone to the consignment shop we liked, and I’d gotten her an iced coffee. Chris and I ended the visit by walking on the bike trail near her house. As we meandered along we both started to sing one of our favorite songs by Miss Patsy Cline, “Walkin’ After Midnight.” Chris knew all the words, as did I, and we held hands as we serenaded each other, and then crescendoed into our big finish: “I go out walkin’ after midnight Out in the starlight, just hoping you may be Somewhere a-walkin’ after midnight Searchin’ for me.”

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“Make It Better” When my sister turned 50, my mother hired some family friends to put together a clambake at her house in Rhode Island for Chris, with lobster, corn on the cob, potatoes, and clams. My mother planned most of it, and my only job was to make the cake. We were also celebrating the fact that Chris had dramatically outlived Dr. Pelican’s estimate that she’d only survive to age 18. And not only that, my sister had managed to become a bad hairdresser and a fake doctor along the way. At first, Chris didn’t want to go with us to our mom’s house. She thought she’d just be stuck with us for the party, which wasn’t very exciting, and not a full group of people. But once guests started arriving, she was very happy to see everyone, be the party girl, and receive presents. When it came time to open cards, she’d announce if it contained a check or cash. If it was empty, she’d shake it and say, “Oh well, no money in here,” and dismissively fling it onto the table. We celebrated my 50th a year later in my town’s old spiritualist hallturned-theater. It’s a gorgeous building, beautifully painted, elegantly decrepit in spots, with scenic backdrop from the early 1900s on the stage. We decorated with Christmas and tea lights and had dinner, dancing, and an amazing cannoli cake. My aunt, a few cousins, and friends did so much to help put it together—partly out of love and partly, let’s face it, out of fear. For many years I’d lobbied for a variety show on a holiday or at someone else’s big event, but no one complied. Now they had no choice but to grant my birthday wish, and it was spectacular. For about an hour, friends and family read poems, sang old standards, or made up silly songs of their own. I got to sing a few times, and for the finale I performed my favorite song, “Hey Jude.” All the partygoers joined in: “take a sad song, and make it better.”

Chris + Dianne at Dianne’s 50th birthday party at the historic Memorial Hall in Stafford Springs, 2016.

But the best addition, as far as I’m concerned, happened first, when my sister and our cousin Carole kicked off the show with the Barry Manilow song I Can’t Smile Without You. Chris and I used to sing it when we were kids, so I thought it’d be easy for her to remember. Carole had worked out some kick-ass choreography, but my sister ended up mostly doing the Nixon, “I am not a crook” peace sign with both hands. And though she had a bit of a nervous start, once she got into it, Chris improvised with backup lines like, “Get it, grandpa!” and “I’m doing great up here!” At so many events over the years, when there was a microphone available, my sister wanted to talk, make a toast, or sing, and she was rarely allowed to. It wasn’t because we didn’t want to let her have it for a bit—it was that we knew she’d never give it back. Now she’d received explicit instructions to sing the one song and then gracefully exit the stage. That’s exactly what she did, with the added move of coming over to give me a hug. My mother was not intervening to manage Chris or our interaction. It was just the two of us Irish twins, and it felt like our years of competition were finally over. She’d won and I’d won. Both. OK, so that’s the Hallmark version. The part I left out was I’d asked my cousin DeDe to make a throne for me, and she did, but once my sister was done with her number, my throne became Chris’s, like she’d earned it as an award for performing. Every time I got up, for even a second, my sister stole my throne. I kept kicking her out, and Chris hovered behind it like a bridge troll at the ready to pounce and take it over again. Eventually, I just gave up and made her sit on my lap so we could share it. There’s an out-of-focus picture of the two of us on the throne. We’re half-smiling and watching the show. I have my distance glasses on, and she’s in a familiar pose of stretching her arm across her chest and making a soft fist over her heart. Coming off the back of the throne there’s a circle of small white lights behind our heads. A nimbus. I learned this word in divinity school, and it describes two separate objects that resonate with my understanding of us: a large, gray, rain cloud or a halo surrounding a saint, usually Jesus. Chris isn’t Jesus, though she’s claimed to be, and neither am I. We’re just human, not special—well, not “extra” special, and not especially good. For years I struggled with the sense that I needed to fit some external measure 174

of being good enough, whether it came from the Catholic Church, romantic comedies, my own disapproving parents, or my early concepts of God. I now find more spiritual comfort from a dream I once had after my father died, where I received the secret of the universe. The secret was: God is the experience of knowing nothing else is required—I want to say ultimate acceptance—not a person, place, or thing—just that essence. And we, as humans, can never be that because we’re constantly striving and wanting. We want to be better, and we strive to do so. And those of us who can’t live up to that actually “sin” more against God by thinking we’re not good enough. The trick is not to strive to be better, which presumes one is flawed, but to accept that God already loves you as you are. A few years earlier, my New Testament teacher showed a rudimentary drawing of a fish, the ichthys, that early Christians used as a secret symbol. When a Christian met a stranger on a dirt road, she explained, one of them drew an arc in the sand. If the stranger drew the other arc, each knew they were in good company. My sister drew her arc the moment we met, and it took me fifty years to finally draw mine.

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Dianne at Monet’s house in Giverny, France, 2017.

Self-Portrait In my 50th year I made a bucket list filled with places I wanted to explore. Apprehension was the main obstacle that had held me back, but also money, and thinking I needed other people to travel with me. I’d gone to Paris eight years earlier to visit my friend Kelly and her family, but I was accompanied by her mom, Kathy, and even still, I was so overcome with anxiety I hardly slept for most of the trip. At the same time, I’d fallen in love with the city and always wanted to return and see more of France. So when my friend Jeanne said she was going to be living in a small, medieval village near Béziers for the school year with her youngest four kids, I said yes to a visit. I was committed to overcoming my panic. Plus I discovered there were antianxiety medications I could take, which I did for the three weeks I was there. In preparation I studied French for eight months, which confirmed my impression that their words are superior to ours. Seriously, what sounds better: “baked goods” or “patisseries,” “bakery” or “boulangerie,” “donut” or “beignet,” “flapjack” or “crêpe?” French words win every time! Even Down syndrome sounds better in French: “Trisomie,” like a transliteration of tiramisu. In France you can’t order a baby with Trisomie, but if you could, that baby would be delicious. In one lesson I learned the word “retard,” and was initially put off, because in America, “retard,” or the R-word, is offensive to people with disabilities and should never be used. Turns out in French it has none of the negative baggage and only means slow, delayed, or late. You’d use it to describe your friend if she were never on time, and it would have no association with the cause of her delays. She’d just be considered irrespectueuse. In 2017, when I arrive at Charles de Gaulle Airport, I’m armed with a colorcoded sheet I’ve prepared to make the most of the sights, and a piece of pa-

per for a cab driver that says, “S’il vous plaît amenez-moi à Saint-Maur-desFossés,” where Kelly’s family will host me for my first week. I’m afraid to use my French because I can tell my pronunciation is awful, and I keep mixing up words. I ask where the Francoprix market is when I mean Franprix and say that I’m on a cow (vache) when I mean vacation (vacances). On the hunt for Gare du Nord, the north station, I inquire about the stop for the black train station, Gare du Noir, and wonder if I come off as a film buff or just plain racist. Soon I just start all my interactions with, “Parlez-vous anglais?” One native speaker in an information booth answers: “In my dreams. In my nightmares.” Usually, though, my request elicits a “Yes, a little.” I learn to “trust the process” and to “be here now”—phrases I’ve heard many times but rarely tested. When a Métro turnstile refuses my ticket, a stranger gets me in with her monthly pass, and when my phone dies, the museum clerk shares his. I catch on that when English isn’t an option, I can usually communicate what I need with gestures or by turning nouns into questions by raising my voice at the end: Toilette? Musée? Métro? Basic politeness gets me pretty far: bonjour, au revoir, and most important, pardon and merci. I also depend on my smart phone. Google Maps gives me many directions. Google Translate helps me decipher signs. I can call, video-chat, email, and text friends and family whenever I want. Technology provides accommodations for most of my limitations, and this frees me to rush through the streets to take on the city as if I’m on fire, as if I’m burning and Paris is fine. I don’t want to stop or pause for long, not only because there’s so much to see, but also because if I think about where I am, and the distance, in years and miles, I’ve traveled to get here, and then I imagine a map of the world and me as a pin sticking out of France, I feel I may burst with excitement or shrivel into panic. For so long, I couldn’t conceive of expanding like this, not only because of my former experiences with debilitating agoraphobia, separation anxiety, situational depression, and panic attacks, but also because I felt I had to be close to my mother and sister in case they needed me. Now, it’s precisely my awareness that they will require more care in the future that pushes me to undertake these adventures while I can. I take over a thousand snapshots, and when I slowly peruse them many months later, it’s like seeing Paris again for the first time. I’m drawn to 178

the symmetry of the gorgeous façades, and the small gardens strewn with unfamiliar flowers, their height, texture, and color all considered when planted. Even when they are arranged in an unkempt manner, it looks like planned chaos. As for food, my palate is unsophisticated, and I can’t read most of the menus, so I’m forced to choose variations of jambon et fromage, or ham and cheese, inside of quiche, savory crêpes, baguettes, omelets, and fondue. I tire of this and begin to crave anything with tomato sauce. I enjoy sitting on benches observing Parisians in their natural habitat. Most keep to themselves. I smile at passersby. They don’t smile back, but I won’t give up. I realize that’s where Americans get their reputation of being more friendly and open than the French. Thin, handsome women stroll with pretty men in fashionable shoes. It’s no cliché about the baguette poking out of the top of every bag, and I’m surprised to see some people eating leftovers out of plastic containers. It seems so gauche. When I leave Paris to travel by train to the South of France for 10 days, believe me, there are times when my terrified inner 10-year-old gets triggered and won’t listen to reason. I almost lose it upon hearing that a transit strike might leave me stuck down there indefinitely. But my fear never gets so bad I feel like a trapped wild animal; I simply call a friend, take an extra pill, write in my journal, go for a walk, or play games on my phone. I later learn the strike was a false alarm and have no further transportation issues. Surviving challenges, small or large, improves my ability to know I can survive them. When I return to Paris and have to change trains from the RER to the Métro at my least favorite place, Châtelet-Les Halles, I do so because it’s worth getting to the Musée d’Orsay to study their collection of Van Gogh paintings. I’ve long been fascinated by his breakdowns, suicide (now considered to be a homicide), as well as his visual art and writings. The rooms that hold the museum’s collection of his paintings are crowded. To get a closer look I have to fight folks taking selfies in front of each piece. Once I catch sight of Starry Night, (La Nuit Étoilée) I hold my ground to study it. I’ve worked hard to get here, and I’m not moving. The more I stare at the painting, the more becomes visible: buildings at the horizon sharpen into shape, the black skeletons of three boats, a couple in the corner on a late night stroll. I’m reminded that my eye, like my mind, makes adjustments, and that the closer attention I pay to something, 179

the more clearly I’m able to understand it. I realize this was true for Van Gogh, but instead of stopping there, he wrestled with what he saw, got it down on canvas, and allowed others to bring to it, and take from it, their own experience. I lean into the couple and detect that Vincent has dabbed a bit of red on her skirt, one of the many crimson accents in his renderings that mark and mold us. There’s a bold assuredness in the way he uses red; to me he sparingly leaves these traces to remind us that his heart lived in possibility. I search out these touches to bolster my own belief in the same. Even in the darker sections, there’s something uplifting about the paint rising into miniature waves swelling to catch the light. Just before I walk away, a woman approaches me and whispers in English, “See how the water glitters? I love that.” Before I take the RER back to Kelly’s, I go outside to the escalier en bois, which literally means “wooden stairs,” but it sounds like an extravagant entrée. I sit and watch the Seine, savor a chocolate crêpe, and notice that I feel blissfully at home. I realize the person I’ve become belongs here, and I feel so alive it’s as though anything could happen. I linger a while to bask in the soft air, the warm sun, and watch the moving river as it flows through Paris. The Seine will eventually join the waters in the English Channel at Le Havre, the port where my grandfather’s family took the steerage ship to America. Back on the train, I peruse my map and wonder how I should spend the next day: at Disneyland Paris or the Louvre. I’m alone, so I get to make my choices myself. Like the woman in Da Vinci’s famous painting, I knowingly smile at those around me, willing them to smile back, letting them know I am here.

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Epilogue

[make ends meet] For years, my role in my family reminded me of Bill Murray’s lines in Groundhog Day, “It’s the same thing your whole life. ‘Clean up your room.’ ‘Stand up straight.’ ‘Pick up your feet.’ ‘Take it like a man.’ ‘Be nice to your sister.’” But as we’ve aged, it’s become easier to relate to my sister on my own terms and accept my responsibility toward Chris. Because I will become her guardian soon enough, I accompany my mother to as many meetings at Chris’s home as possible. As time has passed, the agencies have become more centered on the people they serve and not the demands of the staff. Every six months, we meet with Chris’s team to hear reports and ensure that she’s getting the care she needs. Sometimes the meetings proceed without incident, but my family is prone to a more passionate style, especially in times of worry. Before Christine moved from the home where the abuse occurred, she walked into one of those meetings and offered her typical,“Hello, Devil” to the agency’s director, who was the only man in the room. He was kind of arrogant, so we didn’t let him know the greeting meant my sister thought he was handsome. Soon enough, voices were raised. My mother argued with the case manager, supervisor, and behaviorist. I don’t blame her, since they’d just suggested she was a control freak. She is, but they didn’t know anything about our kind of love; they couldn’t imagine the length of our net or what it takes to advocate for Christine, year after year, in all facets of her life, no matter what. My sister has had it pretty damned easy because of it, and we are never going to stop doing that. The staff turned from my mother to me and asked what I wanted, probably with hopes that I’d be the low tide

to my mother’s encroaching waves. In fact, I was angry, too, but I could see the distress on my sister’s face because of the yelling, so I softly said, “I want you all to shut up, and I want my sister to be happy.” Chris was never one to miss an opportunity to give her two cents, and quickly added, “I want you all to know that I am the judge, and I object to everything.” Everyone laughed and calmed down. Chris and I played tic-tac-toe. As the team discussed a “reasonable set of goals for future achievement,” Chris talked over them by discussing the pork chops she wanted for dinner. The team asked her to “act appropriately.” She ignored them. I loved that she ignored them. She asked for soda. They ignored her. She just wanted out. So I pointed to the kitchen and pantomimed drinking. She laughed, then walked away, saying: “Thanks, Sister—enjoy my meeting.” I thought about what it meant to “act appropriately.” It’s never been one of our family’s strengths. My mother was too fiery, my father too drunk. Chris and I preferred to be the court jesters, the singers, and the snackers, which helped us get each other through our childhoods, and the rest of our lives, too. These days, when I ask Chris to spend time with me, she says yes. When I pick her up, she’ll still repeat the time she’s going to be returning to her apartment: “I’m going home at 4:30, right?” Even though it annoys me, I remind myself that this is about her need to have some control and not her impatience to be rid of me. I’m comforted by how much better our relationship has become. Now when I tell her I love her, she sometimes answers, “I like you a lot.” For her 52nd birthday we went to lunch, then to the salon so she could get a boy’s haircut, then to Dollar Tree to get a word search book and a key chain, and finally to Dunkin’ to score a large iced decaf with two shots of butter pecan and whipped cream on top. I’ve learned to do the Dunkin’ run last so she won’t try to bail on me early. With my mother, it’s sometimes different. Since her thirties, Chris has resisted going anywhere with my mom if it’s not a planned excursion, like a trip to Florida or a holiday, and occasionally she even balks at that. The staff or my mom has to force Chris to leave her house, the staff by verbal insistence and my mom by holding her hand and tugging her to the car. Within minutes, though, Chris is fine, and if the three of us are together, I’m witness to the fact that the two of them are very affectionate and my 182

Dianne + Chris at a local Democratic rally, 2018.

sister wants to keep our mom close. If she goes to run an errand without telling my sister, Chris starts looking for her nervously. When I brought Chris back to her apartment from her birthday outing, I checked her log. The staff keep one for every resident, tracking each person’s actions so the behaviorist can compile a future report. It usually struck me as a cold document, treating Chris like a generator of data instead of a human. But I noticed that now, it looked more like a homework assignment, with corrections in my sister’s handwriting. She’d crossed out the word “good” and changed it to “great,” crossed out “great” and changed it to “terrific.” Where a staff member had recorded that Chris had stolen something, she blackened the word “stole” right out. Another entry said Chris had antagonized a co-worker. Chris wrote, “I am very sorry,” in the margins, but only after interchanging their names to make it look like the other person was the culprit. As I continued to turn the pages, I noticed there were fewer crossed off words because the staff ’s positive entries kept increasing. The most recent said: “Chris had a fantastic day at work, a double fantastic ride on the van home, and a triple fantastic meatball grinder from Subway.” I liked what I saw, because it looked like Chris was dictating it. But I wondered about the days when she’s not as “compliant” as the staff might like, even if she’s simply being herself. If she steals a pen, that is fantastic to her. If she talks too much on the van, so what if it annoys everyone else? And antagonizing a co-worker, or anyone for that matter—I’ve basically made a career out of that. I’d be screwed if someone else were logging my days for me. So I thought it was pretty damned fantastic that Chris had taught the people around her how to tell her story the way she wanted it told. No one had recorded an entry for today yet, so I asked Chris myself. “How was our day together?” She thought for a bit and said, “Today was outstanding.”

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Driftless Connecticut Series Garnet Poems: An Anthology of Connecticut Poetry Since 1776 Dennis Barone, editor The Connecticut Prison Association and the Search for Reformative Justice Gordon Bates The Long Journeys Home: The Repatriations of Henry ‘Ōpūkaha‘ia and Albert Afraid of Hawk Nick Bellantoni Nothing Special: The Mostly True, Sometimes Funny Tales of Two Sisters Dianne Bilyak Sol LeWitt: A Life of Ideas Lary Bloom The Case of the Piglet’s Paternity: Trials from the New Haven Colony, 1639-1663 Jon C. Blue Connecticut’s Fife & Drum Tradition James Clark Paved Roads & Public Money: Connecticut Transportation in the Age of Internal Combustion Richard DeLuca

Post Roads & Iron Horses: Transportation in Connecticut from Colonial Times to the Age of Steam Richard DeLuca The Log Books: Connecticut’s Slave Trade and Human Memory Anne Farrow Birding in Connecticut Frank Gallo Forever Seeing New Beauties: The Forgotten Impressionist Mary Rogers Williams Eve M. Kahn Becoming Tom Thumb: Charles Stratton, P. T. Barnum, and the Dawn of American Celebrity Eric D. Lehman Homegrown Terror: Benedict Arnold and the Burning of New London Eric D. Lehman The Traprock Landscapes of New England Peter M. LeTourneau and Robert Pagini

Heroes for All Time: Connecticut’s Civil War Soldiers Tell Their Stories Dione Longley and Buck Zaidel

Gervase Wheeler: A British Architect in America, 1847–1860 Renée Tribert and James F. O’Gorman

Along the Valley Line: A History of the Connecticut Valley Railroad Max R. Miller

Inside Connecticut and the Civil War: One State’s Struggles Matthew Warshauer, editor

Crowbar Governor: The Life and Times of Morgan Gardner Bulkeley Kevin Murphy

Prudence Crandall’s Legacy: The Fight for Equality in the 1830s, Dred Scott, and Brown v. Board of Education Donald E. Williams Jr.

Ella Grasso: Connecticut’s Pioneering Governor Jon E. Purmont The British Raid on Essex: The Forgotten Battle of the War of 1812 Jerry Roberts

Riverview Hospital for Children and Youth: A Culture of Promise Richard Wiseman New Haven’s Sentinels: The Art and Science of East Rock and West Rock Jelle Zeilinga de Boer and John Wareham

About The Driftless Connecticut Series The Driftless Connecticut Series is a publication award program established in 2010 to recognize excellent books with a Connecticut focus or written by a Connecticut author. To be eligible, the book must have a Connecticut topic or setting or an author must have been born in Connecticut or have been a legal resident of Connecticut for at least three years. The Driftless Connecticut Series is funded by the Beatrice Fox Auerbach Foundation Fund at the Hartford Foundation for Public Giving. For more information and a complete list of books in The Driftless Connecticut Series, please visit us online at http://www.wesleyan.edu/wespress/driftless.

DIANNE BILYAK (Stafford Springs, Connecticut) is a Pushcart-prize nominated writer, graduate of the Institute of Sacred Music and Art, and Connecticut disability rights advocate. Her book of poems Against the Turning was published in 2011, and her work has also been featured in America Magazine, Drunken Boat, The Massachusetts Review, and The Tampa Review. In 2012 and 2013 her plays Cradle to Gravy and The Unauthorized Biography of Dr. Irma King were chosen to be part of the United Solo Festival on Manhattan’s Theatre Row. Bilyak’s interviews with poets can be found on the Poetry Society of America’s website.