Not Fade Away: A Memoir of Senses Lost and Found

by Rebecca Alexander

  The minute I hopped on the saddle for my first spin class, I fell in love. It didn’t hurt my foot or back and left me exhausted and drenched in sweat, feeling fully alive and able in my body. The parts of me that didn’t work well seemed to disappear as I pedaled. It didn’t matter that I couldn’t hear most of what the instructor was saying, which was drowned out by the thumping of the bass, or that, between my limited vision in the dark and the sweat running into my eyes, I couldn’t see very well. I didn’t need to. I loved the feeling of pushing myself as hard as I could up a steep climb and then pedaling as quickly as I could in a sprint. I was on a bike that went absolutely nowhere, which meant I didn’t have to worry about running into anything or anyone. I was able to build my endurance and strength using all of the muscles that I had brought back to life in the years since my accident. I could push myself as hard as anyone else because there was nothing in my way. I had recaptured that feeling of being fully alive in my body, appreciating all of its strength.

  We spend so much time thinking about those parts of us that aren’t physically perfect, and are so hard on ourselves. Even half-blind I could see that a lot of people here spent as much time watching themselves in the mirror as they did exercising. I’m not immune to it any more than any other woman. I am disappointed with myself when my ass feels too big for my jeans or when I’ve eaten an entire pint of peppermint-stick ice cream. I can see well enough to notice the perfectly toned woman spinning in front of me with her impossibly straight posture, and I have to work hard not to wonder what she does that I don’t in order to look like that. But my accident, as much as my disabilities, helped me to see the power of my own body and how precious it is. When I find something that I love, something that I can do as well as anyone else—without being singled out or noticed for what I can’t do, just being one of the group, on equal footing with everybody else—it feels so freeing.

  When I realized I needed a part-time job while attending graduate school, teaching spin seemed like the perfect answer. My gym membership would be free, I could play my own music, and I would get paid for doing something I loved. It was a way of performing, which I had always loved. I could motivate people, encourage them to challenge themselves and keep their spirits high. It was my party, and I was thrilled to see my classes packed to capacity every time. I began teaching at New York Sports Club and New York Health and Racquet, then Equinox, the Sports Club/LA, SoulCycle, and Zone Hampton. I would teach fifteen to twenty classes a week even while carrying a full workload. I became an eating, sleeping, studying, and spinning machine, and even though I was maxed out on every front, I loved it.

  Over the years I have been amazed at my ability to navigate each dark spin room based on my memory of the studio space. I have gotten good at this in all areas of my life: counting stairs, memorizing familiar places, and even remembering exactly where to go in a grocery store or drugstore to get what I need, so that I don’t spend hours wandering around, aimless and lost. When I dance in a class, I know instinctively where there is an open space where I won’t trip over something. I know the spin rooms I have taught in for years like the back of my hand, and I could navigate them with my eyes closed. Luckily for me, I don’t need to yet.

  Of course, spin has its challenges. Like being one of the worst possible environments for a partially sighted and hearing-impaired person. Because it’s dark and loud. Really, really loud. And when one of my hearing aid batteries died—which invariably happened, because hearing aid batteries are notoriously shitty batteries—I had to jump off my bike and, while motivating the class and scanning the room for any hands up for help, do a blind search through my backpack, sorting through to find one of the three sizes of batteries to fit whichever aid I was wearing to teach. This was by far the most exhausting part of the class.

  As I taught over the years it got more and more difficult. But the exhilaration continued to outweigh the difficulties. At spin I was just Rebecca, the perky instructor who liked to dance in her classes and motivate everyone. I wanted to help people learn what I had: that our bodies are capable of so much more than we give them credit for. That it is most often our own fears that get in our way, and that we hold ourselves back without even knowing it. I knew this firsthand, because I didn’t have any choice. It was either that or never learn to walk properly again. That or stay inside, shut out from the rest of the world, because I couldn’t see much or hear much. My students didn’t need to know about my problems any more than they needed to know that I had graduated from Columbia and was a psychotherapist. They just needed me to cheer them on, push them, encourage them. I was the one helping. I was in the seat I wanted to be in.

  • • • •

  It’s different now. My psychotherapy practice has grown and flourished, which is wonderful, but that’s not the only reason why I teach just a few classes a week. I know I’m not as quick as I used to be. I often can’t hear what someone’s problem is if she needs help, or I can’t see if she’s waving her hand. Before I became more comfortable telling people that I was visually impaired, I used to tell them that I didn’t have my glasses on and to please come up to me if I didn’t see their hand in the air.

  After class, when people come over to ask questions, which they inevitably do, it takes every bit of focus I have to try to understand what they are asking me, in their out-of-breath voices in the echoing, dimly lit studio. I hate the idea that people may think I’m rude or insensitive if I don’t notice them. I was raised to be incredibly polite, and my entire professional life is responding to people’s feelings. But I know that I am missing things. That I could offend people, put them off, hurt their feelings.

  Recently, I’ve been more open with the class about my disabilities. A handful of people whom I have become friends with over the years help me negotiate the class, and people have been happy to accommodate me by raising their voices or pointing me in the right direction toward someone who needs help. It can be exhausting to teach a class now, but I still love it, and though I don’t have the time to devote to spin that I used to, I’m not giving it up just yet.

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  When I first saw Alan’s profile on JDate, in the winter of my last year of graduate school, I remember thinking to myself, I’m going to marry this guy. His online profile was full of wit and his sense of humor was unmistakable. He was eight years older than I was, unbelievably funny and clever, and, though not my typical muscle-bound jock, he had an adorable smile and a grown-up menschiness that I found myself instantly attracted to. Though all that I had been through had in some ways given me a maturity that others my age didn’t have, there were other ways in which I had given myself license to act less grown-up. While I had dated a lot of guys in college, there had been no one serious, and I realize now that I always had one foot out the door. If I didn’t, I reasoned, they probably would. A part of me would wonder how long someone was going to want to stay with me when it sank in that, while I might be very self-sufficient now, someday I was going to need help, and lots of it. How could someone try to imagine a future with a woman who would someday be deaf and blind?

  In my better moments I knew that this wasn’t true, that I needed to give guys more credit than that, and I also had to admit to myself my other reasons for not wanting to get too close. How long did I have to be young and pretty? How long would I be able to hide my disabilities and just show a shiny exterior? How long would I be able to banter and charm and not say “what” fifty times in a conversation? Already, I said it too much, and it took much more work than it used to for me to seem normal. So I surprised myself on my first date with Alan.

  It began inauspiciously enough. He met me in front of my apartment building, and as we walked to the restaurant, the street noise of the city made it impossible for me to hear most of what he was saying. Whatever he had to say, apparently, was quite funny, and at one point he turned to me and said, “You’re killing me here, I’m using my best material and you’re not laughi
ng.”

  Then he actually said, “What are you, deaf?” I didn’t say anything back, just smiled and laughed, but then as we got to the restaurant and turned to go inside, I walked straight into the glass door. At this point he probably thought I was either on drugs or a complete lunatic, but he kept at it. The final straw was when he held a fork in front of me to take a bite of his food, and I didn’t even see it.

  Alan is Jewish and, like many of us, comes from a family where food is so much more than sustenance. It is love, intimacy, and sharing. He was sharing his food, and he thought I was ignoring it, refusing his bite. This was unacceptable. So I told him my entire story on our first date. It was the first time I’d ever done that.

  My disabilities didn’t faze him a bit. He told me that he had been afraid of disabilities when he was younger, that he had grown up in a family that turned their faces away from people who were blind or in wheelchairs, not understanding, or feeling bad or embarrassed or whatever it is that makes so many uncomfortable when they are faced with people with disabilities. I think that some people just don’t know how to react. With pity, or maybe a sympathetic smile? Should they try to ignore it? Does it make people see their own mortality? There are so many reasons that it can be scary to see us. I try not to let it offend me or hurt my feelings. It’s their issue to resolve, not mine.

  But he embraced it wholeheartedly, going home that very night and Googling all he could about Usher syndrome, becoming an avid student, quickly knowing even more than I did. It has remained that way ever since. We started dating in February and became serious quickly. Even though there was a part of me that held back, that had always held back and never let any guy in fully, by May we were saying “I love you.” And I meant it. I loved him.

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  That same May, I graduated from Columbia, with a master’s in social work and another in public health. I was spending the summer working in the Disability Services office at Columbia, which had improved vastly over the three years that I’d been at school. I had pushed them relentlessly to do a better job at meeting students’ needs, and the people who ran the office now were extremely competent. Among other things, professors had been taught to do a much better job accommodating students’ needs, and all classes mandatory for graduation were now available in wheelchair-accessible buildings. I felt a sense of pride for having been able to help make the school a better, easier place for other students with disabilities. Alan and I were happy, spending our weekends in the Hamptons, and everything in my life seemed to be pointing in the right direction.

  Then, at the end of June, Alan saw a lump in his neck one morning as he was shaving. One of his glands had become swollen and hard, and after a week of antibiotics, it was still there, a golf-ball-size lump that wouldn’t go away. He went to an ear, nose, and throat specialist, who told him that he should have a needle biopsy, and when the biopsy came back suspicious for Hodgkin’s lymphoma, he was scheduled for a full surgical biopsy.

  His parents flew up from Florida to be there with him, and the night before the surgery we all had dinner together. It was the first time I had ever met them, and I was incredibly nervous and trying as hard as I could to keep up with the conversation. My eyes darted back and forth, and my ears strained, wanting them to like me, to think I was smart and funny and to see how much I loved their son. Of course, they were probably too distracted and worried to even notice.

  After Alan’s biopsy, I was supposed to leave on my annual vacation with my mother’s family, and Alan encouraged me to go and not to worry. A week later he called me in Hawaii. It was Burkitt’s lymphoma, non-Hodgkin’s. Rare, and extremely aggressive. When he had gotten his diagnosis he had gone alone, without telling anyone, and had a bone marrow biopsy, an EKG, and a PET scan to determine that his cancer was still stage one. I wished so much that I had been there with him. I knew what it felt like to be alone with a shocking diagnosis.

  Alan being Alan, by which I mean a massive control freak as well as a huge science and medicine buff, he took control immediately. Not only did he interview several doctors, but he did a ton of research on his own as well. He found the best specialists, studied the different treatments, and crunched the numbers. He decided to receive treatment that would require nine months of aggressive chemotherapy at the Weill Cornell Medical Center.

  The first couple of times he had chemo were going to be inpatient, so I went ahead of him and decorated his room. I remembered how much I had hated being in the hospital and wanted to make it less horrible for him if I could. I decided on a restaurant theme and put a sign on his door that said CHEZ PINTO. I made MADAME and MONSIEUR bathroom signs, and drew pictures of candles and a roast chicken to put on the walls. I brought place settings and Turkish food, wanting to bring his favorites, not knowing how the chemo would affect his appetite, and slept in a chair next to his bed that night. As soon as the first round was over I could immediately smell the difference in him. He had a chemical odor, medicinal and metallic, and I could smell it on his breath and seeping out of his skin.

  We went home to his one-bedroom apartment, where his parents were staying, too. They were going to be flying up for every treatment, so he had bought a bed to put in his living room, and for much of the next year it would often be the four of us staying in one small New York City apartment, sharing one bathroom. His mom, whom he calls Suze, was the ideal Jewish mother. She would cook huge Sephardic meals, completely taking over the kitchen to make all of his favorite foods. I shouldn’t say “taking over,” actually, because I couldn’t cook at all. I still can’t. I wanted to be able to do these things for him, too, to be able to cook and clean and take care of him, and also to show her that I wasn’t completely incapable in the kitchen, so one afternoon I decided that I would bake cookies. Just simple chocolate chip, and the cut-and-bake kind at that. It was something nobody could screw up—except me. I bustled around the kitchen self-importantly, trying to look competent. Somehow, though, they ended up completely burned on the bottom and raw on top. Plus, I burned my arm and managed to set the fire alarm off, filling the entire apartment with acrid smoke. Needless to say, she wasn’t very impressed.

  People were sometimes surprised that I stayed with him, since we had been together for such a short time, but it never occurred to me not to. We never know everything that’s coming, and life can change in an instant. I have had plenty of experience with being dismissed as a potential girlfriend or partner because of my disabilities, and that wasn’t something I was ever going to do to somebody else.

  When my summer job ended, instead of looking for another one right away, I thought I was supposed to stay with him. It was my first adult relationship, and I didn’t know quite how to act. I wanted to be brave and good and there for whatever he needed, and I thought maybe I should do that at the expense of everything else. I sat through his chemo sessions with him, and we watched every episode of Lost. He was amazing. Though I knew he was constantly nauseous, exhausted, and in pain, he tried never to let it show, and he never lost his sense of humor.

  After a little while, though, it became clear that it wasn’t working for me to be around all the time. Alan is a natural helper and giver, and suddenly we had two caretakers in the relationship, neither of whom were good at letting someone else help them. Our first big fight happened that fall, when he told me in no uncertain terms that I needed to get a job and stop sitting around his apartment. He didn’t like being taken care of, and knew how hard I’d worked to get my degrees, and didn’t want me held back in any way by his illness.

  • • • •

  I soon began working at St. Francis de Sales School for the Deaf, in Brooklyn, as the school social worker. The children there were all ages, from toddlers to eighth graders, and many were immigrants and came from poor backgrounds. I would meet with the families of the children, helping them navigate Medicaid or find employment and deal with family issues. Many of the parents didn’t know how to sign, othe
r than the very rudimentary basics, so I would often find myself interpreting between them and their children. These parents would come to me not understanding why their ten-year-old had started throwing huge fits in the house. My heart broke for these kids, and I tried to educate the parents while swallowing my feelings of fury: Imagine not being able to communicate your feelings to your own family, and not having parents able to understand the thoughts and curiosity of their child’s growing mind.

  There were sign classes for adults before and after school, and I urged the parents to take them so that they could communicate with their kids. I watched how much more well-adjusted the children who had deaf parents or parents who signed were, and the ease with which they managed the world, and I realized that it really didn’t have to be a disability. If they were part of a strong deaf community, they could all live full, happy, and productive lives.

  That was when I started to make more deaf friends and to spend more time in the deaf community. Though I had a very small field of vision, what I had was clear and strong with the help of contacts or glasses, which could correct for my nearsightedness, and when I gave someone my full attention, I could be fully engaged in a conversation. It also felt easier to tell them about my eyes. Many of them were familiar with Usher syndrome, and it felt like a great burden was lifted when I could just fully be myself, unjudged, and communicate in a language in which I felt entirely comfortable.

  • • • •

  After Alan’s nine months of chemo, his cancer was gone, and he could fully return to his life. Our relationship, however, which had felt like it was on hold in many ways during that past year, despite how much time we’d spent together, was already showing signs of strain.

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