Not Fade Away: A Memoir of Senses Lost and Found (9 page)

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.

T
hat 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.

I got a call from Ruth, a woman with the California Department of Rehabilitation, who was calling to set up an appointment to come to my house for my first Braille lesson. While I had never seen her, I was sure, as soon as I heard her voice, that she was blind. Her speech felt too exuberant, somehow socially awkward, and almost cartoonish. I hated that this was the first thing that came to mind when speaking to Ruth on the phone, and that I didn’t feel—or sound—as enthusiastic about meeting her and learning Braille as she seemed to be about teaching me, that I was already recoiling from this kind-sounding, cheerful woman. As she chatted on, telling me what the lesson would entail and arranging a time for us, my mind wandered, her Disneylike voice bringing me into a dreamlike state, where I imagined the two of us standing at the gates of a children’s theme park. I pictured her in pigtails with large red bows, handing me a great big rainbow-colored lollipop, opening the gates, and singsonging, “Hello, Rebecca! Welcome to Blind Land. Just take my hand and I’ll show you the way!”

I shuddered and came back to the sound of Ruth’s voice, knowing that there was no way I was going to walk through those gates, imaginary or otherwise. I spoke to her with as much kindness and compassion as I could muster, despising myself but
unable to shake the feeling that I was somehow the one doing her the favor. I deceived myself into believing that I was doing some kind of charity work, helping this blind woman feel good about herself, giving her a job. That she was blind, and I was just pretending to be.

At that time, I hadn’t yet understood what going blind really meant. I couldn’t really recognize how much vision loss I had experienced since my original diagnosis at twelve and still didn’t totally equate that loss with going blind, as crazy as that sounds. I had always interpreted the message that I was going blind as referring to something that was going to happen to me when I grew up, which I certainly hadn’t, and I tried for as little self-reflection as possible on this subject. I still separated my actual self from my diagnosis, too, becoming comfortably detached whenever I had to explain it and how it affected me to people who would ask.

I met Ruth at the top of our driveway to help her maneuver her way to our house. It was hard enough to find the narrow, snaking path that hid along the side of our neighbors’ driveway; for someone who was blind it would have been close to impossible. As Ruth carefully stepped out of the Access-A-Ride van, I greeted her and extended my upper arm toward her, bending it at the elbow for her to hold on to so that I could guide her. I prided myself on doing this expertly. I’d attended enough Foundation Fighting Blindness conferences and events to know the best way to guide a blind person while walking, and I could sympathize with her condition. Empathy, however, was still far beyond my reach.

Ruth had been blind since birth. Her eyes were a cloudy color somewhere between white and light blue, and they couldn’t focus. Her left eye veered up and to the right while her right eye
seemed to be looking directly toward the sky. It was clear to me that she had never been sighted, and I found myself fascinated by her now that she was in front of me. It was amazing to watch the ways in which she had adapted to a sighted world: the way she spoke and listened, and the way she seemed to trust me absolutely as her guide. The trust seemed to lend her an almost childlike quality, and it made me a little uncomfortable, and even angry for her, that she was forced to trust me to lead her responsibly. It seemed so incredibly unfair and I didn’t know where to direct that frustration, except by making sure that I did my very best to make her feel safe and accommodated.

I gave Ruth my arm to hold so that she could feel the movement of my body by the way my arm moved, and let her know when there were stairs or exactly what was coming directly ahead of us so that she would not be caught off guard. When we reached the steep stairwell, I told her that there was a railing on her left side that she could hold on to; I counted each step down and gave her forewarning when our last step was approaching. I loved doing this, helping her and feeling needed. I’ve always felt so fulfilled by offering small gestures of help and seeing others do it, and I felt ease and comfort in helping her, which helped distract me from the real reason Ruth was coming to my house that day. After all, I was still the one helping her here.

My parents had a large, easily excitable Bernese mountain dog named Tally who would bark enthusiastically and hurl her gigantic body at visitors when they arrived. As Ruth and I slowly walked down the second steep flight of stairs into the house, Tally began to bark and dance in circles to welcome us. Ruth laughed, understanding right away that Tally was simply a noisemaker with no interest in harming anyone. Maybe it was because of her
acute hearing, extra sensitive because of her blindness, and her ability to hear the nuances of sound that most people miss, that she was able to instantly understand Tally’s bark. It occurred to me then that maybe she had also heard the reticence in my voice, and possibly too the disdain that I didn’t understand or want to feel and knew I didn’t have any right to.

As we reached the door, Tally approached us and I quickly tried to shoo her away so that Ruth’s path wouldn’t be obstructed. But when Ruth felt the brush of Tally’s tail against her leg she stopped walking and slowly leaned down with her hand extended for Tally to smell. As Tally happily explored her hand, Ruth spoke to her sweetly: “Hello, pretty girl. It’s very nice to meet you.” I thought to myself how ironic it was that Ruth called Tally a “pretty girl,” even though she couldn’t see her and couldn’t possibly know what a dog looked like. What I thought then was that it was just a response that she had learned through hearing it repetitively from others, rather than by personal experience. Now that I’m much closer to where Ruth was, I wonder. What does “pretty” mean when you can’t see? My dog Olive is the most adorable thing in the world to me, but it’s not just her puppy eyes, her lithe, curly-haired body and proud golden tail. It’s her warmth, enthusiasm, and curiosity, her simple doggie radiance. Maybe that’s what “pretty” meant to Ruth. I wish I’d asked her.

Once we got ourselves settled it became abundantly clear that any thoughts I had had about this being for her benefit were woefully misguided. I was amazed by how effortlessly Ruth’s hands flew over the bumpy white page as she read the Braille directions to me. I watched her face, feeling almost voyeuristic because she couldn’t look back at me. I wondered if she could feel me staring at her. I was so curious about her expressions, her rate of speech,
and how keenly alert she seemed. I kept having to remind myself to stop staring rudely and would look back down at the page she was reading, almost as spellbound by her hands as I was by her face.

When it was my turn to put my hands on the Braille I realized how desensitized my fingers were and how difficult it was to feel the difference between each letter. I have always thought of myself as very tactile, my sense of touch heightened to help compensate for my declining eyes and ears. But after putting my hands on the paper filled with hundreds of words coded by little white bumps, I was humbled. I thought of Helen Keller, who had never read a word or heard one in her living memory, and I felt like an idiot for not realizing what hard work this was going to be.

When my first lesson in Braille was through, I promised Ruth that I would practice, even though I had a sneaking suspicion that I wouldn’t; after all, I didn’t need to—I could still see. I walked her to the top of both steep stairways and up the cobbled brick driveway to the sidewalk, where she was to be picked up by the Access-A-Ride bus service. Ruth told me that she had let the bus driver know where and when she needed to be picked up, and since I had a doctor’s appointment that I needed to drive myself to, I thanked her and rather unceremoniously left her there.

When I drove out of the driveway a few minutes later I saw her waiting patiently for the bus to pick her up, and I raised my hand instinctively to wave good-bye, then quickly lowered it as I realized that it was a futile gesture. About an hour later, as I drove home from my appointment and got close to my house, I realized that Ruth was still standing there in the bright sun, waiting.

It wasn’t that I didn’t know what I should do—me, to whom helping others had always come so easily. But I drove right by her,
knowing that I was behaving horribly, that I was selfish and ungrateful and committing a huge betrayal, to her and to myself, but unable to help it. I stared at her as I passed, overwhelmed by guilt and sadness. I felt as though I had taken advantage of her—like I was given a glimpse into her life and what it meant to be blind and I’d rejected her and said, “No thanks, this is not for me.” At that time I couldn’t even admire her for who she was or her independence, because I was so horribly afraid of what she represented: my future.

Sometimes, when I think about the past, there are years that seem to have passed by in mere moments. Those few hours with Ruth, though, seem to have slowed down in my memory, every detail seared into me. I’d give almost anything to go back to that day. To stop and gently take her arm, lead her to my car, and drive her home. To thank her genuinely and ask her the questions that I had been so afraid of at the time. But I didn’t. I never even called her again.

After Ruth I vowed that I would never, ever let myself behave that way again. That had never been who I was; I had always, always been the one to help and to volunteer, to lend a hand to someone who needed it.

I had let Ruth down, and I had let myself down. I had come face-to-face with the thing that scared me most in the world, and I had run away, and I was so ashamed of myself. No matter how much good I had tried to do, or how many people I had worked to help, I felt like I had undone it in an instant. Though I didn’t know it at the time, that day fundamentally changed me.

I never told anyone about it; I was too ashamed. I didn’t learn any Braille that day, either, nor have I really since—though it’s high on the list of
things I absolutely must know and do before I am
totally blind that I really need to make time for
. However, I learned so many other lessons that day, ones that will stay with me forever.

• • • •

One of the hardest things for me to accept is how much I now need people’s help, and that I always will, increasingly so as life goes on. Countless people have risen to the task—from a stranger who offers his or her arm to help me across the street to the advocates for the blind and deaf who have taught me to ask for what I need. From my best friends, Caroline and Alan, who can sign and tactile-sign with me, to Peter, who never lets a joke go by without repeating it to make sure that I hear it, to my parents, who have done everything to find ways to help me, to teach me how to help myself, and immersed themselves in the research community. They have all given so much to me, and I need to remember to be grateful for that, to accept that help as the gift that it is and not run up against the walls of my frustration for needing it.

When a friend who is blind can’t find the coffee sitting on the table in front of her, it feels very natural for me to lead her hand to it. Even when Caroline helps me in the same way I have to try not to flinch: My reaction is to pull my hand away or to say, “I’ve got it, thanks,” uncomfortable and insecure about my need for help. I’ve found, though, that people want to do this; the urge to help others is a basic part of human nature. Not only shouldn’t I deny the people who love me that, I can’t. I need them. I try to remember that they need me, too. Even though I’m the one with the disability, it’s not a one-way street.