Not Fade Away: A Memoir of Senses Lost and Found

by Rebecca Alexander

  I’d been playing soccer my whole life, and I knew I was good, despite my disabilities. What I hadn’t realized was that going from a small private school to a large high school would show me just how little the pond I’d been swimming in had been. So when I arrived for the first day of soccer tryouts in high school, I was confident, until I realized what “good” really meant. I suddenly became keenly aware of all of the things the other players could do that I couldn’t—juggle a soccer ball, see the entire field as they dribbled the ball down it, and play just as aggressively when the afternoon sun was replaced by the evening dusk and it became more difficult to follow the ball.

  Needless to say, I didn’t make the varsity soccer team. I knew I wasn’t as quick or skilled as the girls on the varsity team, but I still held out hope that somehow one of the coaches would see that, considering my visual limitations, I was a damn good player, and that that might make a difference. So I played junior varsity for my freshman and sophomore years of high school before I quit altogether. I was too embarrassed to be a junior in high school and still on the JV soccer team. Hadn’t those years given me enough time and practice to become worthy of playing on the varsity team? Why couldn’t I just try a little harder, be a little better, scan the field just a little faster? I was still giving it everything I had, but it wasn’t enough.

  Despite the fact that I was now excelling in school, I wanted to do more, be more, than I was right now, to find a way to fill the void that losing so much, and knowing I would lose so much more, had left in me. For the first time, too, I started to see beyond my own little world. Maybe I had a better understanding of the impermanence of things than many of my peers did. My world had changed so quickly—my eyes, the divorce, Polly, a new school away from my brothers—that I understood at a young age that there were many things that I wasn’t going to be able to control, that were out of everyone’s control. I couldn’t change what was wrong with me, but I started to think about something that my father had taught me, that sometimes the best way to help yourself is by helping others.

  As early as I can remember, my father instilled in us the importance of giving back to the community and to the world. There is a Hebrew word, “tzedakah,” that translates as “righteousness” or “justice.” It is generally used synonymously with “charity,” but what it really means is a balancing of the scales—that charity is not an act of pity, or mercy, or even necessarily goodness, but of justice. You give back to make the world a better, fairer place—when you have an abundance, you share with those who have less. This was always an idea that resonated very strongly with me, though I have always had a much easier time giving help than accepting it.

  My father led by example. Not only was he a leader and activist in our community, but he would put everything on the line for something he believed in. In 1984, a man named Kevin Cooper was sentenced to death for the brutal murder of four members of a white family. Cooper had just escaped from a minimum-security prison where he had been serving time for a nonviolent crime. He was found and charged, though the evidence was scant and many believed the trial was a sham, and spent the next twenty years on death row. During those two decades, Cooper, who always maintained his innocence, became an accomplished painter, writer, and speaker, and gained a huge following of people, organizations, and celebrities who believed that he was innocent, and, as the day of his execution grew nearer, the groups rallied together. My father, a corporate lawyer at a big firm at the time, took on the case, pro bono, and, leading a team of lawyers, got a stay of execution granted, ultimately going all the way to the Supreme Court to have it upheld. When his law firm had a conflict of interest with the case, he chose to leave it and pursue justice.

  I wanted to be like my father and to reach out to help others. When I was fifteen, in the early nineties, after being extraordinarily moved by a young HIV-positive man named Scott Fried who came to speak at my synagogue, I began volunteering for Project Open Hand, a nonprofit organization delivering meals to people living with HIV/AIDS throughout the Bay Area. I wanted to know that I was making a real, tangible difference in people’s lives, and I learned at an early age that knowing that I was helping someone else gave me great pleasure and a sense of purpose. I don’t know whether or not my disabilities contributed to that feeling, whether I knew on some level that I was going to be someone who would need help more and more as my life went on, but it was something that was really important to me.

  When I first started delivering meals, I didn’t know what to expect. Perhaps that I would go in, chat, help in any way I could. Most people I delivered to, though, would talk to me through the door and ask me to leave the food on their doorstep, or they would open the door just wide enough so they could take the food we delivered to them. They generally didn’t show their faces or want to be seen. It was in the early nineties, and there was still a terrible stigma around the disease, even in the Bay Area, and many of them may have been too sick to want anyone inside. It broke my heart to think of them alone with their pain and illness, feeling shut out from the rest of the world.

  When I was seventeen, my father nominated me to run with the Olympic torch as a “community hero,” and he submitted an application through Sports Illustrated to the Olympic committee about my work with Project Open Hand and my disabilities. I had no idea, and when they called I thought it was a prank. At first I was embarrassed. I wanted to be known as someone who helped others, but I didn’t want to be known as someone who did this “even though she was disabled.” I got over it quickly though, because how often do you get to run with the Olympic torch? There was a story about it in our local paper, and I ran holding the torch for almost a mile (it’s heavier than it looks), my escort runner beside me, a motorcade behind me, crowds of friends and strangers lining the route and cheering me on.

  13

  There were things that I could do like any other normal teenager, that I didn’t have to feel insecure or different about, and my absolute favorite was driving. When I was sixteen my sight was good enough to take the driving test, and my ophthalmologist assured me that it was all right for now, as long as I didn’t drive at night.

  I have always loved driving, and I was always excellent at it, as I still tell everyone who will listen, repeatedly. Though it’s been years since I’ve been behind the wheel, I want them to know. Because of all the things I’ve lost, it was, in many ways, the hardest. As a teenager, there was nothing I was more excited about than getting my license, the ultimate ticket to independence. My dad was with me the morning I went to the DMV to take my test (which I passed with flying colors), then I dropped him off at the BART station and drove to school for the very first time by myself. I promised him that I wouldn’t turn the radio on, and I was true to my word, completely focused and hyperaware of everything around me, so thrilled to finally be the one behind the wheel.

  Sometimes I’d take the long route home from school to pass by as many after-school hangouts as I could, so that kids who knew me would see me driving. At school, I’d walk onto campus in the mornings, trying to look cool and collected while twirling my keys in my hand, hoping that the jingling would attract attention, and if anyone noticed I could say, “Oh, these? These are just my car keys. I almost forgot I had them in my hand!” Why I thought this would totally wow people I’m not sure, but I was convinced that it made me exponentially cooler and more desirable.

  I’d head into homeroom, slide into a chair and drop my car keys with a big clank on the desktop in front of me, wait for my name to be called for roll, then take my sweet time putting them away in my backpack. For effect, I may have even struggled a little to find the right place to put them so that it would be clear to my classmates exactly what I was doing. I’m sure I looked like a total dork, but it was my first step toward real independence, and I relished it.

  If not being able to drive at night was hard, giving it up altogether was wrenching. I had already moved to New York, a city made
for pedestrians—half the people I know who grew up in the city don’t drive—and part of the reason I chose New York was so that I wouldn’t stand out so much or feel so needy. For all of its craziness, New York is a wonderful city for pedestrians. But to lose the freedom of driving, the joy that being behind the wheel gave me, the concrete evidence of my independence, devastated me. I can admit now that I drove long past when I should have stopped.

  One of the last times I drove, when I was twenty-seven, is one of my most vivid memories. I was cruising back to the city from the Hamptons, alone in a convertible with the top down, singing along enthusiastically to the radio. I felt totally free, and loved the faint smell of the ocean and the feeling of the wind whipping through my hair. I wanted so badly to just keep on driving and to just say the hell with this, I am not letting this be taken away from me, too, not this. When I visit my family in California I ache to drive along the beautiful redwood trees that line the curvy roads of Highway 17 to Santa Cruz, or to cruise down the Pacific Coast Highway, watching the crashing waves below as I expertly navigate the turns, totally confident in myself.

  I’ve promised myself that I won’t dwell on what I’ve lost—it’s a waste of time, and I know just how precious time is. So I try not to mourn it, but instead to look back and see that girl, the one with the wind blowing through her hair, feeling so completely independent—so alive and free—and to know that she is still inside of me, and that this is a memory that will stay with me, stay part of me, forever. For me, memories of things I have lost or can no longer do are incredibly vivid, almost like I could step right back into them, as though the past were right here next to the present. We all lose things, and I will suffer far worse losses. We all will. I have only one choice, and that is to keep on living while looking forward to what is ahead, rather than back at what has been lost. Helen Keller once said, “What we have once enjoyed we can never lose. All that we love deeply becomes a part of us.” I try every day to remember that, because I need that to be true for me.

  But, just so you know, I was an excellent driver.

  14

  Another thing that really helped to normalize high school for me was my boyfriend Cody. When I first met him, at sixteen, it was at the party of a mutual friend. He was there with my friend Dan and sat in the corner, goofing off and making fun of people. I figured he was an asshole, and when I came over to say hi to Dan, Cody was obnoxious enough that I ignored him for the rest of the evening, even when he later tried to talk to me. We moved in the same wide circles and kept running into each other after that, and, even though I thought he was a jerk, he was growing on me. One night he decided to prank-call me, and it was annoying and dumb, but it was funny, the equivalent of young boys on the playground, chasing and pinching girls in a clear bid for their attention. I soon realized that he wasn’t who I had first pegged him to be.

  Funny and often sweet, with an offbeat sense of humor that matched mine, he was the most hilarious person I knew. Cody was tall and fit, with beautiful hazel green eyes and an adorable smile. It never occurred to me to hide my disabilities from him, either. It just didn’t matter to him. When I got my first hearing aid I refused to wear it and would only grudgingly agree to put it on during AP history, where our teacher was a low-talking mumbler whom everybody had difficulty understanding. I would slip it into my ear, making sure that it was carefully covered by my hair, and take it out the moment class was over. I wasn’t embarrassed in front of Cody, though, and later, when my hearing loss had progressed, he was the one who encouraged me to wear my hearing aids. I didn’t realize that I could come off as rude, as though I was ignoring people when I just couldn’t hear them. Cody told me this, without judgment, and could even joke with me about it.

  He was also my first real love. We waited a long time to have sex—seven months, which felt like forever as teenagers—but by the time we did, we knew each other’s bodies so well, and were so comfortable with one another, that it felt completely natural. I learned with him where I liked to be touched gently and where I preferred the feeling of firm hands on my body. Feeling the brief wisps of air that passed over us as we moved together reminded me of how freeing it felt to be exposed. Cody’s warm breath against my ear, down my neck, to my collarbone as his hand rested on my bare hip sent a tingling sensation throughout my body. This was possible because nothing between us was forced—my trust in him invited his touch. I felt so safe with my body in his hands and protected by how close his skin was to mine.

  I learned so much about myself through physical touch. With him, I developed trust and confidence in my own body, and I learned to trust someone else with my body as well. I allowed myself to be vulnerable, to explore and be explored. This was my first true experience with intimacy that came from deep within me—a time when the strength of my relationship to someone emotionally enabled me to understand the vital connection between trust and touch.

  • • • •

  I remember one night when Cody and I were lying in his room, and the only light coming in was from the streetlamp through his window. I could see his silhouette, lying next to me as he traced my face with his fingertips, and then, when he stood up I saw his shadow on the floor, outlined by the moonlight. I remember being surprised that I could see it at all and feeling so lucky that I could. Kids are so fascinated by their shadows. How they lengthen and shorten, and how when they’re long they can look almost as tall as their parents. I knew already that shadows were something that would be completely gone soon.

  15

  When I landed it felt like an explosion. I don’t remember the pain, just trying to rasp out a yell, but all that came out was the faint cry of a wounded animal.

  I had gotten drunk enough that night that Cody was angry with me. It was one of our last hurrahs the summer after high school, and everyone was psyched to be out, the night full of promise and nostalgia. We were all headed off to college in the fall. Daniel and I were going to the University of Michigan together, and I couldn’t wait to be with him after four years at separate schools. Cody and I knew that we didn’t have much more time together, which made him even more pissed that I had ruined the night. Dancing was one of our favorite things to do, and we were going to a hip-hop club. Cody was a great dancer, and there was nothing as fun for the two of us as being on the dance floor together.

  • • • •

  I love to have a good time. I’m prone to laughing at inappropriate times and swearing too much, and I have absolutely always loved to dance and to sing. My brothers and I loved to perform. We played the piano and were always in the school musicals. When I was younger and my hearing was still strong enough to clearly hear all of the words, I loved to make up my own choreography to my favorite songs, and my friends and I would spend hours creating intricate dance routines. As I became a teenager I started listening to all kinds of music: hip-hop, rap, classic and alternative rock. There was nothing I loved more than the sound of a good beat.

  I adored camp and school dances: My friends and I would listen eagerly to hear which song would be played next, and when one of our favorites came on we would yell and scream with excitement, singing along while waving our arms in the air and throwing our hair around. I loved, too, the moment when a slow song would come on, the first strains of it sending my stomach into knots as I wondered who might ask me to dance.

  I believe that dancing is one of humanity’s greatest gifts. It allows you to feel and express so many different emotions. When you see someone dancing without inhibition, no matter how silly or outrageous they might look, one thing is certain: They are truly living in the moment. Nothing feels better to me than my body matching the rhythm of a song; I might not be able to make out the lyrics anymore, or sometimes even the tune, but I don’t need my eyes and ears to feel the bass pounding through me, and I don’t need to see or hear well to dance. When I first hear or feel music, a signal goes right to my shoulders, and before I know it I am well on my way t
o starting a dance party.

  • • • •

  That night, though, before we went to the club we had been hanging out in a park nearby, passing a bottle of Smirnoff, which Daniel’s girlfriend Lesley and I drank most of. I was always a lightweight and never much of a drinker, so by the time we made it into the club and onto the dance floor I was starting to feel the effects. I went to the bathroom and could tell by my wavy reflection that I was wasted. Within minutes, I was stumbling, unable to dance or even form a coherent thought. The bouncer had his eye on me and soon asked my friends to get me out of there. Cody and Daniel practically had to carry me out, and, even though I was totally out of it, I could see that Cody was angry. He wouldn’t talk to me on the ride home, and didn’t say good-bye when we dropped him off, and that’s the last thing I remember, though Lesley told me later that she had walked me upstairs and gotten me into bed. I woke up several hours later, around four thirty A.M., still drunk and desperate to pee and get some water, and stumbled out of bed.

  I still don’t know if what happened next was from the booze or my degraded vision, or, most likely, some combination of both. My night vision already sucked, and I couldn’t see a thing as I lurched out of bed. I felt my way along the wall, struggling to find my door, but I was so disoriented that I had no idea where it was. I started to panic and moved more frantically, my drunk brain unable to help me find even this most familiar of routes. I fumbled by my French windows—I don’t know if I actually turned the big handle to open them or whether they had already been open, but as I became more and more turned around, desperate to get out of my room, I managed to back up against my large, open window (honestly, I think I might have been trying to sit down on the ledge, perhaps thinking I had finally found the toilet) and fell backward more than twenty-seven feet onto the flagstone patio behind our house, landing, miraculously, on my left side, breaking almost everything but my head and neck. Mere inches and my story would have ended right there.