The only thing worse than the itch was the boredom. My friends had gone off to college; I felt as though everybody’s life had gone on without me, and I wasn’t really in touch with any of them. It’s so hard to remember now how different things were, but this was before the Internet, back when no one but high-powered businessmen carried a cell phone. Email had just been introduced, but dial-up was slow as molasses, and no one was using it much yet.
I still had visitors. My parents came all the time, bringing food and books and anything that I needed, staying for every hour that they could, and friends and family called occasionally. Lauren would come visit me, hoisting herself up onto my bed and talking on and on to me, distracting me from my boredom with her babbling. I was so desperate for company that I was even excited when a nurse from the Visiting Nurse Association came to the house to help bathe me every few days. When they didn’t come, my grandma or Polly would help me. I’d wheel myself into the bathroom, put the lid of the toilet seat down, and then I’d transfer myself using my right leg to sit on a towel placed on top of it. I would sit there, naked but for my casts, passing a washcloth back and forth with whomever was there to help me that day. They would patiently wash every exposed inch of my body, and, while at first it was embarrassing, it was such a relief to be washed, and it felt so good to be clean.
Once a week I’d pull my wheelchair up to the sink and put my head back slightly while my helper used a cup to scoop water from the sink to wash my hair, massaging the shampoo deep into my scalp. That was the most wonderful feeling of all. With most of my body in casts, I felt as though so little of me was ever touched, and when it was, it was generally in a very clinical way. To have someone’s hands touching me affectionately was such a relief and a joy. I longed to be able to throw my arms around someone for a hug, to snuggle, to dance up against Cody, even just to hold someone’s hand.
Grandma Faye came to stay for a few weeks, arriving with armfuls of flowers, and, in addition to helping me bathe, she would spend long hours talking and visiting with me. I felt like I really got to know her at that time, as a person and not just a grandma, and I treasured our time together. She is still gorgeous, even now, at ninety-six, with beautiful, keen blue eyes and an infectious smile. Every day she completes the New York Times crossword puzzle. She travels the world on Road Scholar tours, is about to go to China and the Far East, and has remained a student of life for nine and a half decades.
When we spend time together now, both with our hearing aids, me with my cane and her with her walking stick, Grandma Faye is a living example of what she taught me then. Nobody wants to hear you complain, so keep the bitching and moaning to yourself. Embrace the world with a positive outlook, and you will get so much more out of life. She is such an inspiration to me, and she was indispensable to my recovery.
Even with my visitors, though, I spent most of my time alone. Although I used as many hours as I could to help myself recover, doing the exercises prescribed for me diligently, there always seemed to be more time. Waiting, waiting, waiting. As an adult, spending time alone is something I cherish. At that time, though, the loneliness was excruciating.
One night, when I didn’t think I could take another minute of sitting in the bed, my family and I decided to go to the movies. I was so excited to finally be going somewhere, anywhere; it had been so long since I had done anything that would even remotely be considered fun. When we got to the theater, though, we found out that the movie we had come to see was all the way upstairs and not wheelchair accessible. As I looked up at the huge flight of stairs in front of me, which might as well have been Mount Everest, I felt completely defeated, my disappointment almost bringing me to tears. It was the first time I realized what a challenge even the simplest pleasure that we all take for granted could be for someone with disabilities, and it gave me an appreciation for what some people have to go through just to do things that most never think twice about. At the time, I didn’t connect it with my other disabilities, but I would soon enough learn that feeling myself. We ended up at a Disney movie downstairs.
A month or so after my first surgery I had a follow-up one to take the metal pins out of my left foot. After so many surgeries I was terrified and exhausted by the idea of going back to the hospital—another cast, another recovery. Even though I would only have to stay over for one night this time, the idea of even another hour in one of those sterile, medicinal rooms made me nauseous. Then, though, I remembered the present Lisa had given me right before she had left for college.
Knowing that I had to go back in, she had made me a surgery CD, and as soon as they started prepping me the headphones went on. By the time they wheeled me into anesthesia they had already given me a little something, and I was singing along heartily to “Joy and Pain” by Rob Base; I conked out right in the middle of James Brown’s “Get on Up.” It was unbelievable that such a little thing made it all so much less scary and more bearable.
When the doctor finally removed the cast, it felt as though my leg and foot didn’t belong to my body. Most of the bones in my foot were grafted from my hip, and I couldn’t believe that it was mine. At first I was terrified to move it, sure that I would somehow damage it. My physical therapy began, three times a week, and I looked forward to those days more than anything. We would begin with my hand, for which I worked on range-of-motion exercises, followed by a session for my foot, still so fragile and tender. When they first put me on the stationary bike I could only do ten minutes because my leg was so weak, but as the weeks went on, and my body got stronger, I loved being on that bike.
Once I was finally in my walking cast I could drive myself to physical therapy, which felt like the sweetest taste of freedom. It was such a relief to be able to do something for myself, to be behind the wheel again, that I almost cried as I slid into the driver’s seat for the first time.
I’d always been athletic, but after my accident I had lost a lot of weight, my left calf had atrophied, and my strong, sturdy body looked completely changed. It was the first time I became aware of the connection between my mind and my body, and taking care of it became a priority. It took the accident to make me realize just how crucial it was for me to pay attention to and care for my body. I felt the same way that I later would about my sight and hearing: that I had to appreciate my body for the gift that it was. It prepared me in ways for what was to come, and it helped me to realize just how resilient I was.
When I wasn’t at physical therapy I worked to rehabilitate myself in the driveway, every minute that I had the energy for. I had never been so focused and driven. I still look back at that time to give me strength, knowing that, since I got through it, I could get through anything. My life was so stripped down that even the smallest movements became triumphs. I went from wheelchair to crutches—special ones, because both my hands were broken, and I couldn’t put weight on them—and then I graduated to a walking cast and slowly began to bear weight, at last, on my left foot. Lauren would sometimes come play in the driveway while I was out there, running circles around me on her strong little legs, the excellent athlete she would one day be already starting to emerge, and I longed for the time when I took for granted all of my working parts, and prayed for a time when I might be able to again.
18
As 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 c
lose 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.
19
The 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.
20
When 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 mad
e 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.
Not Fade Away: A Memoir of Senses Lost and Found Page 7
