Not Fade Away: A Memoir of Senses Lost and Found

by Rebecca Alexander

  I would walk into her office, feeling terribly about myself, and she would remind me that my disabilities were not my fault, and tell me how beautiful and smart I was, and steer the conversation toward all of the stuff that was right, and not wrong, with me. I watched the sense of fulfillment that she got from helping others and recognized that it was a trait that we shared, and it made me proud to be anything like this wonderful woman, this dynamo. As I got to know her, I found out more about her life, which hadn’t been easy. But she didn’t focus on the past, she lived in the present, and no matter how busy she was, she would always make time for me. She didn’t pity me or see me as my disabilities. I felt like I had found a role model for who, and how, I wanted to be. I was able to accept her help, something that has always been hard for me, because the kind of help that Joni was offering was a kind that taught me to help myself, which made all the difference.

  Joni encouraged me to learn sign language. Though the hope was that I would someday in the distant future be a candidate for a cochlear implant, which would allow me to hear, however robotically, that still seemed like a science fiction fantasy, and I knew that signing would help me, even now, to be able to communicate more fully with people. When I learned that Michigan was offering its first-ever course in sign language, Joni immediately made sure that I got a spot in that small class, since it was much in demand. I would learn a language that would come to be invaluable to me.

  What humans can accomplish out of necessity is extraordinary. Communication is a need: We are a storytelling people, and we need to tell others our stories. Currently, about seventy million people in the world use sign, allowing them to live as full and rich a life as any hearing person.

  Though it was not officially taught until the eighteenth century, mentions of sign language show up as early as the fifth century B.C., when Plato quotes Socrates as saying, “If we hadn’t a voice or a tongue, and wanted to express things to one another, wouldn’t we try to make signs by moving our hands, head, and the rest of our body, just as dumb people do at present?”

  By the late 1700s the first free school for the deaf, in France, had been established by Abbe Charles-Michel de l’Épeé, and the deaf children who came to it all brought the signs they had used to communicate with their families at home. By learning and collating these signs, l’Épée began to construct a complete language, the standard language of sign was soon born, and schools for the deaf spread across Europe.

  The American School for the Deaf, the first of its kind in the United States, was founded in 1817 by Thomas Gallaudet and Laurent Clerc, and Gallaudet University, which opened in 1864, was, and remains, the only liberal arts college primarily for the deaf and hard of hearing in the United States and the world.

  Sign language is beautiful. It is a robust and exciting language, constantly changing and growing, the way that all modern languages do. It is also the only way to communicate two languages at once, which, if you think about it, is incredibly cool. In addition to hand signs, there is an incredible amount of animation in faces, which is a huge part of the language. You can be tired, or you can be tired; it’s all about how strongly you gesture and how much your face conveys. Things tend to be more direct, as well, in a way that I find refreshing but that might not fly in the hearing community. Such as: You have gained weight and stop to chat with a deaf friend whom you haven’t seen in a while. After the hellos, your friend points at your stomach and then signs, by blowing out her cheeks and using her hands to mime her own body puffing up, that you have gotten fatter. If a friend said those words to you, it would probably hurt or anger you. But because there is not much language wasted in sign, there is an honesty and a lack of pretense. You’re not being judged, it’s just a more direct way of communicating. It is still possible, and necessary, to have a deep conversation, a long, involved, philosophical one or a sweet, slow, loving one, but it’s time-consuming, and requires a great deal of concentration.

  Being part of the deaf community is something that you have to work at. You have to make it very clear that you are willing to put in the time and effort to communicate and make friends with people who are hearing impaired, and integrating myself into the deaf community was not easy to do. It is a group that sets itself apart, quite intentionally, partly because in the deaf community people do not consider their lack of hearing to be a disability and partly because they have often been misunderstood, misrepresented, and ill-treated by much of the hearing world. They were historically treated as though they had inferior intelligence, and many hearing people seem uncomfortable in the company of someone who is deaf. It is natural for people to want to communicate in their own language, and for the deaf, sign language is the only one that they have. For me, it can be such a relief to be with my deaf friends; it is, despite my diminishing vision, a language that I can still communicate more easily in.

  It’s often just too hard for me to have a casual talk with a stranger, or with anyone, for that matter, who isn’t completely engaged; for me, a conversation requires effort and total concentration, and it’s amazing, once you notice it, how hard it is for most people to give someone else their full attention. It would be hard for me, too, if it wasn’t a requirement at this point, but it’s also a lot more rewarding. Looking right at someone, not over their shoulder to see who else is in the room, and really focusing on what they’re saying, usually leads to a much more intimate and interesting conversation, if they’re willing to do the same.

  When you communicate with someone who is deaf, they always give you their full attention; there is no other way to communicate when you are using your hands and eyes as your ears. You have to be fully present.

  • • • •

  People talk a lot about “living in the moment” and “being present.” Of course, I wouldn’t wish what I have on anyone, and I would never have chosen it, but it has given me an extraordinary ability to understand profoundly what living in the moment really means and to always try my best to do just that.

  I don’t mean living each day as if it were my last. I have been there, done that. I’ve gone bungee jumping and skydiving. There have been times when there were too many guys, too much drinking, a never-ending whirlwind of “let’s grab life by the balls.” But I’ve learned that not only is it impossible to keep up that frantic pace, in the end, it’s also not very fulfilling. I have what many people would call an enormous (some might say excessive) amount of energy, and staying still is just not in my nature, but never pausing to catch my breath is not the way to appreciate a world that is slowly—and sometimes not so slowly—going silent and dark for me. And while mine is an accelerated decline, one that will leave me with decades of blindness and deafness—many more than I’ll spend with hearing and vision, if I live a long and healthy life—the end is inevitable for all of us. In some ways, I feel lucky to never be able to forget that.

  By living in the moment I mean truly appreciating every day, every minute, that I can. I remember to watch the trees in bloom, when the apple and cherry blossoms spend their precious few weeks in spring with us, and even though they’re fuzzy now, losing their edges, even though I can only see small pieces of them at a time, I’m so happy to be able to see them at all. I love to watch people’s faces. I probably stare too much, but someday I won’t see anyone’s face, so I look and look, burning the images of the people I love into my brain before they are, for me, forever frozen in time.

  Nothing is permanent, and while we all live with this fact, it’s an easy one to put aside. To save for another day. We’re all dying, but for me, two enormous parts are going at an accelerated rate, and that gives me the ability to remember to notice what I can, while I can. Don’t underestimate yourself; you probably would, too. We all have the ability to appreciate and gather every bit of joy that we can from this world. We just forget to.

  I appreciate what I have, because I have less today than I had yesterday, and more than I will tomorrow. I am n
o Pollyanna, though I am an optimist, which, in my case, is an extraordinary stroke of luck. There have been, of course, times when I’ve been as furious and frustrated and heartbroken as you can imagine I would be. I have been through times of profound sadness for the losses I have experienced, and for those yet to come. Times when I have woken up in the middle of the night, when I finally have the time and space for it, and let the sadness wash over me. I had been told for so long that I would go blind and deaf, and now I’m actually, really experiencing it. Even now, I’m not sure where I am. When I’ll cross over. I used to think of my thirties as so old, and now I feel so young. I lie awake in the dark, in the complete silence. I don’t know how quiet it is, really, if the garbage trucks have already started their noisy routes, if a dog is barking outside or a drunk crowd is laughing their way down the block. I can’t hear anything, except what’s in my own head. Sometimes I can’t help but wonder how it will be at the very end, though I try not to. Will I have a last clear image that I see, before my pinprick of a hole finally closes up forever? Or will things just blur more and more, an impressionist painting that gets increasingly less recognizable until finally it’s just a swirl of fading color, and then nothing? Will the last authentic sound I hear be a laugh, a cry, a subway rumbling into the station?

  This is not a productive line of thought, but allowing myself to really feel these emotions has been a crucial part of how I cope with the reality of my condition. When I am overcome with it, I often cry and even beg whomever or whatever is out there to just let me be, to let me hold on to what I have left. Please. And then I move on. I don’t feel like the cards I’ve been dealt are unfair, I don’t think that life is that complicated, and I know that pity is a trap that will deplete my self-esteem and take away time that I don’t have to waste. I choose instead to be grateful: to be happy with what I have today, and to be optimistic about tomorrow. It’s a conscious choice, and one that takes effort, but what’s the alternative? What other choice do any of us have if we want to live our lives to the fullest?

  If we knew everything that we’d eventually have to face in life, it would paralyze most of us. I have to prepare myself, as much as I can, for the inevitable. Because if I spent all of my time focusing on that future place devoid of light and sound, I would have missed, would be missing, so much in the present.

  When I hear people say how fragile life is, how it can all be taken away from us in a second, I always think that, for me, it’s not life that feels fragile, it’s the living of it, in this precarious place between seeing and blindness, and hearing and deafness. I used to experience glimpses of what it felt like to be blind or deaf throughout the day, reminding me of how different my life is from others’. Today, I teeter along a fine line between the two, and which side of it I’m on seems to differ from day to day, and sometimes even hour to hour. Some days are better than others, and while there may be fluctuations, things are, as they say, only trending in one direction. This is what’s happening. The line is going to blur until I can’t see it anymore.

  21

  A year after my diagnosis, when I was twenty, I went home for winter break. Though Cody and I hadn’t seen each other in a while, we always hooked up when we saw each other. This time, though, when I went home, he was distant and seemed to have no interest in anything romantic.

  At the time, I didn’t know that he had a new girlfriend; I think that he was apprehensive about telling me and hurting my feelings. I was sure that he was no longer attracted to me and that if I just looked better, he would want me again. At the time, I didn’t recognize that what happened next was not really about Cody at all.

  While I had never been overweight, I became convinced that I needed to be thin to be happy. When I got back to school I immediately joined Weight Watchers and started going to the gym daily, losing a pound a week, just the way they tell you to. As I started to see the results, though, instead of sticking with the program, I wanted to push myself further, work harder, get as thin as I could. So I started to exercise more, sometimes as much as three hours in the morning before my classes, or for hours at night if I couldn’t fit that in. Not the fun kind of going to the gym, chatting with friends on the StairMaster, happily listening to music as I climbed, but serious exercise, all I could get. I’m well aware that this is not an original affliction for young women, but I made the same mistake so many others have. I believed that if I kept it together and looked perfect, maybe no one would notice the things that were wrong with me, all of my flaws.

  I think many people, particularly young women, are familiar with this feeling. On top of trying to keep it all together with studying, socializing, exercising, and trying to be liked by everyone around me, I was keeping secrets from most people. I didn’t want to talk about my eyes and ears, and I struggled not to let my limp—and my continuing pain—show. The idea of people feeling sorry for me made me physically sick, so instead of focusing on my disabilities, which were totally out of my control, I focused on the things that I could control: eating and exercising, and keeping myself as fit and attractive as I could.

  The Rebecca I wanted people to know was fun-loving, easygoing, hardworking. She loved to dance and to flirt. She was a good friend, someone who made things more fun. I wanted boys to think that I was pretty and baggage free, but I was struggling so hard to like myself. It wasn’t my fault that I had Usher syndrome. Intellectually I understood that. Why though, deep down, did I still sometimes think, as I had since my first diagnosis, that it confirmed some fundamental wrongness in me? I was worried that if people knew I had Usher syndrome they would think of me as less fun, and that I would eventually become a chore and that they might be nice just because they felt sorry for me. I knew, too, that I wouldn’t be able to hide it forever. So I wanted to be wonderful now. I loved it when guys looked at me, their eyes telling me how much they liked what they saw. I wanted to keep that feeling as long as I could.

  Why is it that we sometimes have to learn the same lessons over and over? After my accident I came to appreciate my body for its resilience and power. I exercised to feel the joy of all my working parts, to make myself strong. Now I had started to take it for granted again, that I had a working, healthy body. Now I wanted to make it perfect, even though I knew deep down that it never could be.

  I had a dream one night that I’ll never forget, one so clear that it wouldn’t take an analyst to understand the meaning of it. It was during the height of my eating and exercise disorder, where I would work out for hours a day and then binge, often on peanut butter, late at night, when my body, having starved all day, was desperate for the high-fat calories and nutrients it provided.

  In the dream, my hearing aids were covered in peanut butter. I kept wiping, digging into every crevice, trying desperately to get them clean, but no matter how hard I tried, no matter how much I cleaned off, there was still more. I just couldn’t get all of it out.

  That summer, when I went home, I was thin, fit, and perfectly toned. It was all that I thought about. I took diet pills—those terrible ones full of ephedrine that are now banned—and subsisted on as little food as I could. Breakfast was a thinly sliced apple that I would dip into a low-calorie, artificially sweetened yogurt. Lunch was usually carrots dipped in salsa, and dinner would be a large salad full of vegetables, skinless chicken breast, and fat-free dressing.

  Cody and I ran into each other early that summer, at the gym. He thought that I looked fantastic, and we made plans to get together right away. He had broken up with his girlfriend, the one whom I didn’t know about until years later, and I was sure that his renewed interest was all about how great I now looked. Even though this was Cody, who had loved me long before any of this, I was convinced that it was all about my body. It was just the reinforcement that I was looking for but was, of course, the worst thing for me.

  I would spend the next several years struggling to like and accept my body, wasting so much time and energy, the way so
many women do, judging myself by my reflection in the mirror.

  22

  That same summer, as I painstakingly counted every calorie and exercised fanatically, I started to look into services available to people living with disabilities in California. Joni had encouraged me to do it, and at first I dragged my feet about it, until my mother’s nudging and my own curiosity got the better of me. I hated thinking of myself that way, as someone who needed help. Like people for whom parking spaces were reserved, or someone on the bus whom others would jump up and give their seat to. While I admired others for their bravery, and for being able to advocate for what they needed, I still couldn’t imagine myself as part of that. So even though I called, I told myself that my decision to learn Braille had more to do with the fact that I thought it would be cool and interesting to learn, like people learn Italian, rather than something that would become a necessity for me down the road.

  Braille had always fascinated me, ever since I was a girl reading the Little House books, in which Laura’s sister Mary goes blind from encephalitis. Laura’s family sacrificed and worked so that Mary could attend the Iowa College for the Blind, where she studied all of her subjects in Braille. It was an immeasurable gift from a poor family to their daughter, but one they deemed important above all else, for her to be educated. I remembered the illustration of beautiful Mary, a serene smile on her face as she returned from school, and my imagination ran wild with the idea of being able to read through the touch of my fingertips. So much so that I would often close my eyes while gliding my hands across the page just to pretend that I, too, could read Braille.