Not Fade Away: A Memoir of Senses Lost and Found (6 page)

T
here 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.

A
nother 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.

W
hen 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 to 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.

I don’t know how long I lay there, probably only a minute or two, but even my quiet wails were becoming too much for me when, in an extraordinary stroke of luck, a neighbor who lived behind us, a cop just getting home from a very late shift, heard me. He ran across the street to look over the wall behind our house and then raced to me. How my mother heard me I still don’t know, but with the keen sense that only a mother has, she instantly woke up and came into my room. When she didn’t see me she raced frantically through the house, trying to follow my voice, and then ran back to my room in frustration, and this time noticed the gently blowing curtain and the wide-open window. She looked out and saw me splayed across the flagstones. By the time she got to me our neighbor was there, making sure to keep my neck and head still, the ambulance on its way.

When the EMTs and police got there they were sure that I must have jumped or that my mother had pushed me. I wanted to explain, but my voice wasn’t working, and my body was in total shock. But I knew what they must have been thinking. How on earth could someone fall out a window?

I still couldn’t feel anything below my neck, but that would come soon enough, an unimaginable pain, every inch of me burning like it was on fire. I was rushed to the trauma center at Highland Hospital in Oakland, which was generally reserved for gunshot wounds from drive-by shootings. I lay on the gurney, croaking out profuse apologies and attempting to assure anyone who would listen that I was sorry to have caused them so much trouble, that I was really okay. They looked at me as though I was insane, because I was not remotely okay. Every limb on my body was broken in some form: My entire left foot was completely shattered, as were my left hand and wrist; my right hand was broken; and one of my vertebrae was fractured and compressed.
Ultimately, the only thing left without a cast would be my right leg and foot.

A nurse came over and introduced herself, explaining that she was clipping off my ring because my body was swelling up so fast. Cody had given it to me, and I was devastated, tears coming for the first time and streaming down my cheeks. I hadn’t yet comprehended what devastating shape I was really in; all I could focus on was that ring, and I was heartbroken.
Is Cody still mad at me?
I wondered, with the idiocy that only a teenage girl could possess.

They transferred me as quickly as they could to Alta Bates hospital in Berkeley, the same hospital where I had been born, where I would spend the next month.

The first operation I would have would be reconstructive surgery on my shattered left foot and hand, but it had to wait at least a week, to give the massive swelling time to go down. Those days passed in a miserable opiate haze, the pain so excruciating that when I came up from it even a little I was instantly given more morphine, and it took weeks to wean me from it. The nurses had given me a clicker so that I could administer my own morphine when I felt I needed more. It looked like something you might see on
Jeopardy!
for contestants to click as soon as they have an answer for Alex Trebek, and I was convinced that it was some kind of psychological prop that they used to keep the patients from screaming at them for more meds, because I would click that button with my thumb over and over again to no avail and have to call them anyway. I guess I was one of the ones in bad enough shape that they always came running when I needed them, which I’m sure was often, as I have been told many times by my mother that the morphine made me behave like a total maniac and rendered me completely incapable of reason or grace.

I was also unable to move in my hospital bed without the help of several nurses. Since I was completely immobile they would come in every few hours to adjust my body so that I wouldn’t get bedsores, which was a nearly impossible job for them. They couldn’t actually pick me up or move my limbs because of the severity of my injuries, so they had various methods of moving me with the use of pillows. Even the tiniest of movements would make me scream in pain, and the catheter that I had to use left me with the constant, urgent feeling of needing to pee. I cringe now, thinking of how ungrateful I must have seemed, how unreasonable and crazy, between the pain and my drug-induced delirium. I had always prided myself on being polite to a fault, but now I could barely recognize my old self. In a matter of seconds my life had changed completely, from being a babysitter chasing after little kids, so excited to go off to college and be independent and have what felt like my “real life” begin, to a patient stuck in this bed, lucky to be alive but totally incapacitated. I was completely dependent on others and in a kind of pain that I couldn’t escape no matter how many drugs they pumped into me.

I was only given one task that week, and, strangely enough, it was the only thing that made life bearable. In order to make sure that the morphine wasn’t suppressing my breathing too much, I had to blow into a small tube and make a miniature Ping-Pong ball rise in it with as much breath as I could muster, trying to get it to bob above a little blue line in the tube. It was my first challenge, and even pumped full of morphine I tried to focus everything I had on it. I was determined to make that ball rise all the way to the top, and I lay in my room blowing it as often as I had the strength, surrounded by bouquets of flowers and get-well balloons. At first I could barely get it to move, but I learned right
from that first week that the only way to get through this was going to be to look at it as a challenge and give it everything I had. To take my shattered, drugged body and do what I could with it. I was going to blow the shit out of that ball, and everyone was going to be proud. I was going to ace the ball test like no one ever had before. I’d be in the books, the girl who blew the ball sky-high. I had worked hard in school, on the soccer field, in school plays, but this was so far beyond anything I had faced. I had no body, I couldn’t move anything. The ball was it.

When people hear the story of my accident, the horror they feel is probably even worse than what it would be for someone else. “Oh my God, with everything else you’ve had to endure, how awful!” But I learned something integral to who I am today, who I’ve been able to become. The perseverance I would need every day of my life really began in that bed, with that little ball. The rest of the long, painful recovery would come, but I had already learned the lesson, that I had to meet it head-on, one day, one hour, one minute at a time. There was just no other way to do it. Every single thing that I have accomplished in my life that means something to me was done with really hard work, and the moment that started was there, in my hospital
bed.