Not Fade Away: A Memoir of Senses Lost and Found (8 page)

A
s I promised myself I would be, I was ready to begin college the winter after my accident. I knew I couldn’t go all the way to Michigan, since I still needed to see my doctors frequently, and I feared that the snow and ice would be a real hazard for me. I had been admitted to UC Santa Barbara, and we decided that I should begin there and move to Michigan when my body felt ready.

I couldn’t wait to go, to be out of the guesthouse and back in the world of the living, and it felt like ages since I had spent time with people my own age. Lisa was at UC Santa Barbara, as well, and I was psyched to find out that we were in the same dorm. Without hesitation she welcomed me into her circle of friends, wonderful women whom I am close with to this day.

Every day my body felt a little bit stronger. My friends and I would go to the gym together, and I appreciated it—even the StairMaster—more than I could have previously imagined. My friend Sophie and I would listen to the radio on our Walkmen, and when a song came on that we both loved we would look at
each other, and, even if we were across the room from one another, we would burst simultaneously into loud song. It felt so good to laugh and sing with friends, and, best of all, I could finally dance again. My friends and I would have impromptu dance parties, music blasting from our dorm rooms, caught up in the joy of our newfound independence. There is something about singing and dancing with my girlfriends that is totally irreplaceable; it gives me a feeling of such delight and freedom to be in the middle of a throng of joyful, dancing bodies. Even the stupidest keg party was made fun as soon as a great song came on and we could take over whatever space there was to get our groove on. We would sing and dance everywhere we went, and I loved it all the more for having not been able to do it for so long. Already, the sunshine and work and fun of college were helping the months of being immobile fade from my mind, though the scars, and the pain, would remain.

• • • •

Chronic pain is an insidious thing. While my accident was certainly an important lesson in patience and perseverance, the physical pain won’t ever be gone. My back, hand, and foot have never been the same, and while I have tried not to let it stop me from doing anything that I really want to, I struggle with it every day. Like my diminished vision and hearing, it is something that I will always have to live with. As with the tinnitus, I try to tune it out, and sometimes I can. It’s amazing what the body can get used to. I try to keep it to myself, because, as Grandma Faye would say, nobody wants to hear it. Complaining has never gotten me anywhere, so I try my best not to.

T
he summer after the accident, when I was nineteen and had just finished my second quarter at UC Santa Barbara, I returned to Skylake Yosemite Camp as a counselor. Cody came with me. He was in college at San Diego State, and we had gotten together a few times that spring, making trips to visit one another, and were a couple again that summer. It felt almost like being resurrected to go back to my old life, but with a joy and appreciation I couldn’t have imagined before. As happy as Skylake had always made me, to now be able to do things I thought I might never do again, to be fully alive and back in the world, made me happier than I had ever been. And to be with Cody again, though we both knew that it was only temporary, an interlude together between our own separate lives, felt good, familiar and comfortable and right.

It was the last summer I still had enough hearing to wake up to the sounds of birds. I could hear their individual songs, including the trill of my beloved Beatrice, though they were fainter, of course. The next significant decline in my hearing came just a few
months later, and I would never again be able to hear my morning birds without my hearing aids. Even with them, my discrimination—which is another part of hearing loss, being able to distinguish similar sounds from one another—would never be good enough again to hear them distinctly.

I was a swim counselor, my eyes and ears still strong enough to scan the water for any signs of trouble. Shallow nineteen-year-old that I was, I had mostly requested swimming because I wanted to be on the docks next to the water so I could work on my tan, but it turned out that I also loved to swim. The coolness calmed the ache in my foot and felt wonderful on my mostly recovered body. Swimming was exercise that was demanding without being painful, and it was that summer that I really felt my body come fully back to life.

Each morning I woke early, before reveille; put on my bathing suit; and left my hearing aids behind. I’d head down the swim trail to the still silent, empty lake—no screaming kids or boats roaring yet—where the water was still calm, and you could see just the gentlest ripple as the water lapped lazily at the rocks along the tip of the shore. I would slip in, the first to break the stillness, the lake all mine. I didn’t need my eyes and ears then, just the warmth of the water—strangely balmy in the morning, while it was icy cold during the day—embracing me, the clean scent of the lake and the trees, and, most of all, the feel of my body, every muscle and tendon waking.

I had always loved competitive sports and had exercised to stay in shape, but after so much time spent immobile, the sheer pleasure of moving my body felt liberating, and that summer was when the true athlete in me really started to emerge. I wanted to push my miraculous body further than it had ever gone. I was sure I could actually feel my muscles wrapping themselves around
my put-back-together bones, protecting them. I would swim from the dock to a buoy set far out in the lake, then to a second one and back to the dock, until I heard the wake-up call, when I would swim back to the dock and pull myself up, breathless and jelly legged.

Some evenings I would return to the lake after dinner, swimming the triangle again. The harder it got, the more I loved it. Feeling my heart beating, my breath coming faster, knowing that my body had been shattered and now it was whole, mine to love and take care of, made it easier to break through the pain. This was nothing compared to the agony of those first steps I had taken in my driveway, the swimming a joy after having to be still and sore in my hospital bed, day after day. I chose this pain, and it wasn’t one I had to fear. And then I would break through and it would become effortless, my strokes long and smooth. I would stay in for so long that when I was done my arms and legs would be noodles, my stomach muscles knots, and my body feeling as though it weighed a thousand pounds without the water to carry it.

Once every summer session there was an organized five-mile early morning swim across the length of the lake, and all summer I practiced for it. It started at three thirty in the morning, and each swimmer had a canoe with two counselors paddling next to them. Mine were Cody and our friend Barclay, who had both, in keeping with Skylake tradition, stayed up drinking and smoking pot all night until they were due down at the docks. When I got down to the lake they were in fine form, with plenty of beer in the bottom of the canoe, for what would turn out to be a four-hour journey. It was still dark, so I tried to vaguely follow the tree line. I kept swimming off course, and my hearing aids were out, so I was unable to hear them as they yelled and laughed, trying to get me back on track. Between my inability to see and hear and their
inebriated state we must have added at least a mile to the course, and it’s no wonder that I came in dead last. But it was my first major athletic accomplishment, and when I emerged from the water, breathless and beaming, I’m not sure I’d ever felt so proud of myself.

That summer stands out like a dream. I was whole again, with my accident behind me, not aware that a few short months later I would find out, on a cold, snowy day in Michigan, just what was in store for me.

W
hen I got to the University of Michigan, one of the first things that I did was to go to the Services for Students with Disabilities office, where I was pointed to the director of Deaf and Hard of Hearing Services. I wasn’t sure what to expect and had only a vague idea of how they might be able to help me. What I found there was extraordinary, and who I found even more so. The moment I walked in, the director, Joni Smith, greeted me warmly. She was a jovial woman in her midfifties whose friendly blue eyes and incongruously girly voice immediately put me at ease. She was like gingerbread and warm milk, someone I was instantly comfortable with and felt safe around. She also turned out to be the fiercest advocate I had ever met. Her grandparents had been deaf, and she herself had been a sign language interpreter for Bill and Hillary Clinton, Kofi Annan, the Dalai Lama, and many others.

As accomplished as she was, though, her greatest passion was making sure that her students got the help that they needed and were entitled to. I don’t think that I recognized then what a
burden I thought that my disabilities were to other people. A part of me was furious that I needed to ask for help from anyone, and another part of me felt ashamed. Which, Joni made very clear that first day, was total bullshit. I had no idea just how many rights I was legally entitled to until she explained it to me, and made it clear that I wasn’t a nuisance in asking for help. She taught me crucial lessons in advocating for myself, ones that I would need later, when I would be out in the real world, where there wasn’t someone to help me, and where people were not nearly as kind and accommodating as they were here. I think it’s difficult for so many of us, especially women, to advocate for ourselves, and Joni’s encouragement gave me the strength to do that in all areas of my life.

She also taught me that I should never take no for an answer when it came to getting what I needed. I had wanted to remain anonymous in my classes and would quietly explain this to my professors and ask them to make an announcement in class to see if there was anyone who would agree to take careful notes, and in return be paid for taking them. Most of my professors were great about it, though occasionally I’d get one who didn’t understand what I needed or who would say no. Joni was a sweetheart, but when it came to services, she was a force to be reckoned with. If a professor didn’t help me, she would call them, and her sweet, girly voice would turn fierce and steely. “This is not an option,” she would tell them, “and if this is an issue in the future I will have to bring it to the university’s attention.”

Joni was also my confidante. The tinnitus had just begun when I started at Michigan, and when I left the doctor’s office, not with a prescription for something that would soothe it but with a diagnosis of certain deafness and blindness with an
uncertain timeline, she was one of the first people I told. I could cry with Joni, and I could be myself without reservation.

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 no 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.