I’D ALWAYS WANTED to believe that there was some magic to your disability, some deeper meaning in the barrier that separates you from the rest of us, like opaque, wavy glass on the principal’s office door. For years I held on to the notion that this obstacle and my constant, fruitless attempts to overcome it somehow made our lives more important, gave our suffering a spiritual dimension. I was waiting for the Disney ending when the Virgin of Lourdes would walk down off the stained-glass window in the church, bless you with the holy waters, and call you healed.
Then one day I realized that I had been completely wrong about all of it. Your autism was nothing special. Nor was the chaos it brought into our family. It was just life. We had it worse than some, better than others. There was nothing to wait for. This was it.
Considering how long I’d clutched that other flag, I surrendered it with surprising ease, tossed it aside like an old newspaper, brushed my hands together, and got on with things. In my case, getting on with things meant claiming my life for myself, the life I’d put on hold for so many years while I was waiting for the grand finale. I’d spent years worrying about what I was supposed to do to save you, never realizing there was nothing I could do. I kept a corner of my mind so busy with worry that it felt like I was doing something important, but it was just static. I wasn’t actually doing anything for you. Just worrying away the time, my life, yours.
I had to face the fact that whatever became of me would come from me and noplace else. My interests, talents, and inclinations finally claimed my life for their own and began to marshal my days and years with meaning. I’ve had to sort out my desires and motivations to construct my own compass, replacing what had been there before—an empty sense of obligation—with the everyday reality of my own, ordinary life. I find that if I trust myself and take my time, I tend to move in the right direction, and I don’t seem to keep running off three ways at once.
And then here you are. Now that I don’t have to spend all that time worrying about you, I have begun to see you more clearly. There is our history—your life, my life, and the interwoven patterns of our shared past with its joy and pain. But mostly there is just you—very alive and in the present. You are a living, breathing woman, who is also trying to make her own way in the world. It has become apparent that there is this opportunity, this new endeavor. After all this time, I have the strange and simple challenge of trying to learn how to be your sister.
WE ARE RIDING together in the car. I’m thirty-five and I’m driving. You are thirty-nine and silent. We are traveling at top speed down the Columbia River Gorge as I drive you back toward your home in eastern Washington. We’re listening to classic rock, because that’s the only station we can get on this highway cut deep into the basalt canyon dividing Washington from Oregon. We have water on one side, cliffs on the other, and we are racing east.
You’re tapping a balled fist softly against your knee. I look at you, my big sister, your short brown hair the exact color of mine. As I’ve aged, my brown eyes have lightened to match your hazel ones.
We can’t offer each other much. I’ve always wanted to make your life better, but I don’t know if that is even possible. I have no idea what you would want for me or if you are even capable of such an estimation. But I do know at least that you wanted to come visit me, that you wanted to stay, and you are happy, now, to let me drive you home. My heart is full of all I can’t say to you, because you wouldn’t understand, because you would rather ride in silence. Still, I see you there.
“Hi, Margaret,” I say.
You look at me. “Hi, Eileen.”
We are quiet again. I’m watching the ribbon of the road racing toward us through the windshield.
“Hi, Eileen,” you say again.
“Hi, Margs.”
I’m listening. I wonder what you are thinking, where your mind goes as you lean your head against the window and watch the white line on the side of the highway as it glides past the car.
“Hi,” you say.
I look at you. You point to the radio.
“That’s Aerosmith, Eileen.”
This makes me laugh.
What would Steven Tyler say? You can’t call me on the phone or tell me you love me. You can’t even tell me what you did last week, but you can recognize Aerosmith anywhere.
“Yep, that’s Aerosmith, Margs,” I tell you.
“That’s Aerosmith.”
“Yes, that’s Aerosmith.”
“You’re listening to Aerosmith, Eileen.”
“Yes, Margaret. We’re listening to Aerosmith.”
We pass this piece of information back and forth between us like a bit of magic. It’s a piece of treasure, a soap bubble catching all the colors of the rainbow. And, working together, we keep it up in the air.
I’ll think of this moment in years to come when we are suffering through a rough spot brought on by one of your moods. When you don’t want to talk to me, or when you want to go home early even though I just drove three hundred miles to see you.
I will think of it during the times when you are quiet and happy, when you reach out to take my hand as we walk up to the house, when you sit next to me in a bar listening to a blues band, when you call good night to me from my guest room.
I will feel it reverberate—our own hard-won and fragile joy, the thrum of the undeniable bond that links us. It’s a fragile borderland between hope and change. I cling to that and try to believe that it might bleed over into the rest of my life.
You have made my life indescribably different from what I could ever have imagined. I may have given up expecting much from you, and I know things could fall apart at any moment. But I’ve come to understand that you are making an effort to let me into your life, just as I am creating a place for you in mine. Sometimes, I can simply absorb the grace of it all—the simple fact that we are sitting next to each other sharing the same moment.
Last fall during your visit, we climbed a steep flight of stairs from downtown to my neighborhood and were both winded when we reached the top. As the ground flattened out you reached over, twined your slender fingers in mine, and asked me if we were going to have dinner. I assured you that we were.
You looked worried, your eyes searching mine. I know you just wanted to know what came next. So do I.
resources
BOOKS ABOUT SIBLINGS AND FAMILIES
Being the Other One: Growing up with a Brother or Sister Who Has Special Needs, Kate Strohm (Shambhala Publications, 2005)
A Difference in the Family: Living with a Disabled Child, Dr. Helen Featherstone (Penguin Books, 1982)
The Normal One: Life with a Difficult or Damaged Sibling, Jeanne Safer (Free Press, 2002)
Siblings of Children with Autism: A Guide for Families, Sandra L. Harris and Beth Glasberg (Woodbine House, 2003)
BOOKS BY SIBLINGS
Boy Alone: A Brother’s Memoir, Karl Taro Greenfeld (Harper Collins Publishers, 2009)
The Ride Together: A Brother and Sister’s Memoir of Autism in the Family, Paul and Judy Karasik (Washington Square Press, 2002)
Riding the Bus with My Sister: A True Life Journey, Rachel Simon (Plume, 2002)
That Went Well: Adventures in Caring for My Sister, Terrell Harris Dougan (Hyperion, 2009)
Thicker Than Water: Essays by Adult Siblings of People with Disabilities , edited by Don Meyer (Woodbine House, 2009)
BOOKS BY ADULTS WITH AUTISM
Emergence: Labeled Autistic, Temple Grandin and Margaret Scariano (Warner Books, 1996)
Nobody Nowhere: The Extraordinary Autobiography of an Autistic, Donna Williams (Perennial, 2002)
Send in the Idiots: Stories from the Other Side of Autism, Kamran Nazeer (Bloomsbury, 2006)
Thinking in Pictures and Other Reports from My Life with Autism, Temple Grandin (Doubleday, 1995)
BOOKS BY PARENTS
Exiting Nirvana: A Daughter’s Life with Autism, Clara Claiborne Park (Little, Brown, 2001)
Let Me Hear Your Voice: A Family�
��s Triumph over Autism, Catherine Maurice (Ballantine Books, 1993)
Making Peace with Autism: One Family’s Story of Struggle, Discovery, and Unexpected Gifts, Susan Senator (Trumpeter, 2006)
The Siege: A Family’s Journey Into the World of an Autistic Child, Clara Claiborne Park (Back Bay Books, 1982)
MOVIES
Autism: The Musical, 2007
The Black Balloon, 2008
The Keys to the House, 2004
Rain Main, 1988
What’s Eating Gilbert Grape, 1993
acknowledgments
THIS BOOK COULD not have been written without the help and encouragement of the many special people I am lucky enough to have in my life. I would like to express my deepest gratitude to: Anne Bartlett Blair, my generous and kind first reader; Larry Garvin, for being the family filter and for giving unexpected and insightful comments about the writing itself; Beth Award, who has listened to my stories for years and whose friendship I cannot do without; Steve Zaro, faithful friend and sage, who always steers me right; the Sol Sisters, who inspire me to be the person they think I am; my family, Lawrence Garvin, Patricia Garvin, Mike Garvin, Larry Garvin, and Ann Modarelli, for their love and support; my grandmother, Patricia Travis, for feeding me books and telling me I would be a writer; Terrell Harris Dougan, fellow sibling and bridge to the book world; Laura Yorke and Matthew Lore, for believing in this story; Brendan Ramey, for inexhaustible love and support; and Margaret Garvin, who taught me how to read the world.
about the author
EILEEN GARVIN WAS born and raised in the Pacific Northwest. The youngest of five children, she has always been close with her sister Margaret, who is three years her senior and was diagnosed with autism the month Eileen was born. She writes for newspapers, magazines, and Web sites from Hood River, Oregon, where she lives with her husband, Brendan. This is her first book.
HOW TO BE A SISTER: A Love Story with a Twist of Autism
COPYRIGHT © EILEEN Garvin, 2010
ALL RIGHTS RESERVED. No portion of this book may be reproduced, distributed, or transmitted in any form or by any means, or stored in a database or retrieval system, without the prior written permission of the publisher.
THE EXPERIMENT, LLC
260 FIFTH AVENUE
NEW YORK, NY 10001-6425
WWW.THEEXPERIMENTPUBLISHING.COM
SOME OF THE names of people, and identifying details, have been changed to protect the privacy of individuals.
Grateful acknowledgment is made for permission to reprint a portion of the lyrics to “Mack the Knife” on pages 25–26:
English Words by Marc Blitzstein
Original German Words by Bert Brecht
Music by Kurt Weill
© 1928 (Renewed) Universal Edition
© 1955 (Renewed) Weill-Brecht-Harms Co., Inc.
Renewal Rights Assigned to the Kurt Weill Foundation for Music,
Bert Brecht
and
The Estate of Marc Blitzstein
All Rights Administered by WB Music Corp.
All Rights Reserved
LIBRARY OF CONGRESS Control Number: 2009940033
eISBN : 978-1-615-19117-8
How to Be a Sister Page 20