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Copyright © 2014 by Rebecca Alexander
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Library of Congress Cataloging-in-Publication Data
Alexander, Rebecca (Psychotherapist)
Not fade away : a memoir of senses lost and found / by Rebecca Alexander with Sascha Alper.
pages cm
ISBN 978-0-698-16216-7
1. Alexander, Rebecca (Psychotherapist)—Health. 2. Retinitis pigmentosa—Patients—United States—Biography. 3. Usher’s syndrome—Patients—United States—Biography. 4. People with disabilities—United States—Biography. I. Alper, Sascha. II. Title.
RE661.R45A44 2014
617.7'35092—dc23
[B]
2014008690
While the author has made every effort to provide accurate telephone numbers, Internet addresses, and other contact information at the time of publication, neither the publisher nor the author assumes any responsibility for errors or for changes that occur after publication. Further, the publisher does not have any control over and does not assume any responsibility for author or third-party websites or their content.
Penguin is committed to publishing works of quality and integrity. In that spirit, we are proud to offer this book to our readers; however, the story, the experiences, and the words are the author’s alone.
Version_1
This book is dedicated to the two most influential women in my life: my mother, Terry Pink Alexander, and my stepmother, Pauline Fox.
Contents
Title Page
Copyright
Dedication
Epigraph
Chapter 1
Chapter 2
Chapter 3
Chapter 4
Chapter 5
Chapter 6
Chapter 7
Chapter 8
Chapter 9
Chapter 10
Chapter 11
Chapter 12
Chapter 13
Chapter 14
Chapter 15
Chapter 16
Chapter 17
Chapter 18
Chapter 19
Chapter 20
Chapter 21
Chapter 22
Chapter 23
Chapter 24
Chapter 25
Chapter 26
Chapter 27
Chapter 28
Chapter 29
Chapter 30
Chapter 31
Chapter 32
Chapter 33
Chapter 34
Chapter 35
Chapter 36
Chapter 37
Chapter 38
Chapter 39
Chapter 40
Chapter 41
Chapter 42
Chapter 43
Chapter 44
Chapter 45
Chapter 46
Chapter 47
Chapter 48
Chapter 49
Chapter 50
Chapter 51
Chapter 52
Chapter 53
Chapter 54
Chapter 55
Chapter 56
Chapter 57
Chapter 58
Acknowledgments
Kindness is the language which the deaf can hear and the blind can see.
—Mark Twain
Although the world is full of suffering, it is full also of the overcoming of it.
—Helen Keller
1
Even though the doctor’s office was warm, I was freezing. A nineteen-year-old California girl in the midst of my first winter at the University of Michigan, I couldn’t shake the cold that seemed to seep into everything. Though my hair and many layers of clothes had long since dried from my wintry trek through piles of mounting snow to the school’s medical campus, I could still feel the chill in the constant ache down my leg and into my foot that never quite went away, making my limp even more pronounced.
The office was spare and bright, and as I sat there, aimlessly looking around, legs tucked under me as I absently rubbed my stiff ankle, I thought about how many rooms I’d been in just like this one. Days of tests and waiting, and more tests, and more waiting. This time I was here for the ringing in my ears, a relentless noise that had followed me for weeks, perpetually making me feel as though I had just left the loudest rock concert imaginable. Sometimes it completely drowned out other noises; at other times it whined incessantly in the background, keeping me awake at night, making me feel as though I was losing my mind. I knew what it was called—tinnitus, from the Latin word meaning “to ring”—but that didn’t come close to describing what I was experiencing. It felt as though it was coming from inside and outside of my head, reverberating against my eardrums, something so obviously real that it seemed impossible that nobody else could hear it. When someone spoke to me, no matter how quiet it was around us, I felt like I needed them to raise their voice above it, the way they would if a fire engine were screaming by, or, better yet, speak directly into my ear. Please just let this go away, I kept thinking. What I didn’t know at the time was that the ringing would never go away, that it would become my constant companion, and that in time I would learn to tune it out almost completely, a noise so familiar that I would sometimes have to strain to hear it at all.
The door opened, and a doctor who appeared to be in his midforties walked in, followed by a few awkward-looking residents who quickly jockeyed for place around him, all trying to get a good look at the patient. The doctor, brisk and forthright, asked if they could stay while he went over my diagnosis with me. I nodded, smiling at them, feeling bad because I could tell that things were not good, and that they were going to have to listen to the doctor give a diagnosis that none of us wanted to hear. But they averted their eyes from my gaze, looking busily down at their clipboards, not yet having mastered the specialist’s casual smile: persistent, even in the face of very bad news.
• • • •
Though we weren’t aware that anything was wrong until I was twelve, it was there all along, lying in wait, showing itself in ways too subtle at first to notice. Ours was always the fun, boisterous house, the one all of the neighborhood kids wanted to hang out at, full of laughter, music, and roughhousing. My brothers and I were athletic: heedlessly racing, chasing and slugging it out when we fought. When our friends came over we would take countless screaming, bumpy rides in our sleeping bags down our long stairway and run wildly through the house. All of which probably made it harder to notice my clumsiness—though I was always the one tripping over things, banging into them, getting hurt. Being the only g
irl of the three of us, I shook it off, determined to be as tough as my brothers were. Even though Daniel and I were twins, while Peter was three years older, I always felt like the youngest, trailing after Daniel—brilliant, athletic, beautiful Dan, already the superstar of everything—determined to try to keep up.
In ballet, too, I was the clumsy one, awkward and off-kilter. In my pink tights and tight bun that I brushed incessantly to keep smooth, I was so eager to be graceful. But no matter how hard I tried I could never maintain my balance while holding my positions or float across the floor like the other girls. My stern, ramrod-straight instructor scolded “Rebecca” so often that I began to sneak out of class, hiding in the dressing room and eating my snack of Goldfish crackers in an attempt to avoid further humiliation.
There were other signs, too, like the way I would turn my head sideways to watch TV, cocking my left ear toward it while looking out of the corners of my eyes, or the way I seemed to tune out sometimes, especially when I sat in the back of the classroom, leading my teachers to refer to me as a “dreamer,” which even then I knew was code for “not paying attention.” But none of this was out of the ordinary enough to catch anyone’s attention in our busy, noisy household.
Really, though, it goes back so much further than my childhood, long before Daniel and I floated safely together inside my mother, a yin-yang of boy and girl curled against one another, when no one could have imagined the terrible and wonderful things growing inside of each of us. Back to Eastern Europe, most likely Kiev, where both of my parents had ancestors. Their numbers shrunk from countless pogroms, cousins would marry, and carry with them a single mutated gene that ended up here, inside of me, invisible, until at twelve I started having trouble seeing the blackboard.
• • • •
Although our house was a loud one, with rarely a silent moment, as a younger child I remember it as mostly joyful noise—laughing, talking, and lots of singing. We each tried our best to be more clever than the next, knowing that it pleased our parents, rapid-fire jokes and witty retorts tossed back and forth. My mother had at one time sung professionally, and we would often crowd around her at the piano, belting out show tunes as dramatically as if we were on Broadway, until she would stand up and lead us singing and dancing up the stairs to do our homework. Quiet felt so strange to me that I used to feel uncomfortable when I was alone, turning on the television or music for noise, much happier and better able to relax with plenty going on around me—so different from now, when silence often feels like my salvation.
That all changed when I was ten, a couple of years before we started to notice my vision problems, when a new noise started creeping around our house. At first it was barely noticeable, angry whispers through gritted teeth. Eventually my parents’ fights grew louder, screaming matches where my brothers and I would race in, pleading for them to stop or trying to entertain them, anything to make it go away. By the time they started to notice something was wrong with me, they were already separated, caught in that hazy “trying to work it out” phase, which we could all tell wasn’t working.
My dad had taken me to the optometrist after I told him that I was having trouble seeing the blackboard at school, assuming that I needed glasses. The doctor had frowned through much of the exam—a look I’ve gotten to know well over the years—and at the end of the appointment told my dad that he had seen something in the back of my eye that needed to be examined more thoroughly, but he didn’t have the equipment or the expertise to properly evaluate it. So we were referred to an ophthalmologist, and then another one, and another. We went to see specialists at the University of California–San Francisco and Stanford, and eye charts were replaced with increasingly complex equipment and tests, one of which required me to have hard lenses with wires coming out of them attached to my eyeballs, while another had me staring at bright flashing lights as long as I could without blinking. I kept thinking, All this just to get glasses?
Each time, I waited for the doctor to come out with a smile, to nod and tell us that he’d figured it out, that things were just fine, they’d fix me right up. In one test I was given several times, I would sometimes press the button to signify that I’d seen the little flashing light even when I hadn’t, wanting to make everyone proud. I wanted to ace these eye tests, to have everyone tell me I had done a great job, to get to leave and pick out a cute pair of glasses, go home and stop thinking about my eyes and my parents’ fights and their worried glances at me. I wanted to worry about twelve-year-old things, hanging out with my friends and spending hours on the phone with them, talking about boys, what we would wear to the upcoming middle school dance, and whether or not one boy or another liked us as “more than just a friend.”
Eventually, the diagnosis came. The doctors told my parents that they thought I had something called “retinitis pigmentosa,” an incurable, inherited disorder that meant the cells in my retina were slowly dying. They explained that I would most likely be blind by the time I was an adult, and my parents had to decide how to break this news to me. How do you tell your child this? What words can you possibly find to explain this to a young girl? I can’t imagine their heartbreak, knowing that someday their daughter would no longer be able to see them, or her brothers, or the world around her.
From the start my mother was convinced that I should have all the information, that it was my body and that the more I knew, the more I could prepare and find ways to help myself face, emotionally and physically, what lay ahead. If I knew, she argued, I would understand why some things were hard for me, that it wasn’t my fault that I couldn’t see a tennis ball coming, or had so much trouble in dance, or couldn’t see my way to the bathroom at night without banging into things. She knew this was a challenge I had no choice but to rise to and fully believed that even at my age I should be allowed the responsibility of understanding.
My father vehemently disagreed. I was, in his eyes, still his little girl. He was terrified that I would hear what he referred to in a whispered hiss as “the b-word”—blind. He thought that I should be given the information slowly, over time, so that I could digest it. He had all of the literature from the hospital and the Foundation Fighting Blindness sent to his office, so that I wouldn’t see any of it. At first all that I understood was that my vision was getting worse, and that it would become even harder to see at night. The rest would come slowly, the progression of the decline in my vision and hearing subtle enough from day to day that the realization, when I was young, never hit me full force. I’m not sure, though, that even if my parents had told me everything from the start, I would have been able to comprehend it. How could a twelve-year-old possibly imagine going blind?
• • • •
At nineteen, back in the warm office in Michigan, the doctor sat down across from me, the interns flanking him shifting uncomfortably as he delivered my diagnosis. He spoke kindly but directly—no sugarcoating here: I was going blind and deaf.
He told me it was a genetic disorder, one as of yet undocumented in the way it presented in me, but he had his suspicions all the same. Usher syndrome was his hunch, the symptoms that characterized it being simultaneous hearing and vision loss, though thus far he had only seen it affect people much younger, who were either born deaf and blind or had it present in early childhood. At that point none of these seemingly trivial details mattered to me, it was only the first sentence that I heard. The words pounded like a drumbeat in my head—blinddeaf blinddeaf blinddeaf—drowning out even the tinnitus. Still I tried to smile, nod at the right times, always be the good patient.
Looking back, it shouldn’t have come as a shock. It wasn’t the first time I’d heard “blind” or “deaf.” I knew that my vision was deteriorating more quickly, and my hearing was getting worse, too. Maybe I hadn’t been ready to hear it before, but this was the first time that a doctor had laid it all out for me, making sure that I understood. And I did. For the first time I actually really heard it. Me. Blind. D
eaf. No cure, no stopping it.
I tried to think, to ask him questions about what I should expect and how fast it would progress. But they were all met with a gentle shake of his head and a simple, “I’m sorry, we just don’t know.” When we were done, I smiled, thanked him, and stood up. I stayed composed, said good-bye to the other doctors, and walked out, trying not to let my limp show, knowing that they must have pitied me enough already. I left the hospital, surrounded by great walls of shoveled snow, but this time I hardly noticed the cold.
By the time I got back to my dorm, I knew what I would do with what I had just learned: nothing. I didn’t call my parents immediately or go find Daniel, somewhere on campus, no doubt surrounded by a throng of friends and admirers. I went back to my room and took off my hat, shaking my long dark hair around my ears, making sure that it completely covered my hearing aids. I knew that I would still take them out and slip them under my mattress when I brought a guy back to my room, that I would do everything I could to compensate for my diminishing vision without talking about it. Sometimes it felt like a character defect, the same way it had when I was twelve. If I had just done better on all those tests, maybe my parents wouldn’t be divorced, maybe I wouldn’t have had the accident, maybe somehow I could just rewind it all and not be here, knowing what I was going to lose. Which, at the time, felt like everything.
2
Ashkenazi genetic disorders are common. Tay-Sachs, a devastating, progressive disease of the nervous system, is probably the most well-known, but there are many, and it’s estimated that one in four people of Eastern European Jewish ancestry is a carrier for one of them. These disorders come from a recessive genetic mutation, and, since genes come in pairs, if only one is mutated, you don’t get the syndrome, but you’ll carry the gene with you. There are now simple blood tests for many of them, since, if both parents are carriers, there is a 25 percent chance that the child will inherit it. If only one parent is a carrier, it is harmless. Well, “harmless” being a relative term. Maybe “dormant” is a better word.
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