Not Fade Away: A Memoir of Senses Lost and Found (7 page)

M
y first surgery lasted twelve hours. Two doctors took bone from my hip, each using some to reconstruct my left hand and foot, one starting as soon as the other had finished working on his respective appendage. I had two screws put into my left hand to hold everything together, and the bones in my left foot were shattered so far beyond recognition that it had to be completely rebuilt.

Before the surgery my parents had been told that some of the bone in my foot would have to be fused together, and that I would walk with a significant limp for the rest of my life and would probably never be able to run again. They made the wise decision not to mention this to me before my surgery.

After the surgery, as I lay in casts in the bed, the days passed by endlessly. The things that made me happy were such small ones, but I came to appreciate them so much. I would lie in the dark, generally awake before dawn, smelling the flowers that always filled my room (the nurses referred to my room as “the flower shop”). My grandma Faye gathered them from her garden
and from her friends’ gardens to bring to me when she drove up from Santa Cruz. The smell of the flowers masked many of the horrible medicinal smells of the hospital, which were so nauseating to my already heightened sense of smell. I spent hours lying incapacitated in my hospital bed watching the flowers bloom. Each morning I looked forward to seeing how much they had bloomed overnight. Unable to move most of my body on my own, the simple pleasure of watching them open gave me a sense of peace. I first experienced the beauty of stargazer lilies while I was recovering in the hospital, and they became my favorite flowers. Not only because of their bright color and fragrance, but because of how long they lasted and how significantly they changed size, color, and scent as they bloomed. I fell more and more in love with them as I watched the life cycle of each lily that kept me company in my room.

When that first light started creeping across the window I would be so overjoyed, knowing that someone would be there soon. In the beginning my family would take turns spending time with me, so I had someone there as much as possible. My parents, Polly, and Grandma Faye were frequent visitors and occasionally spent the night. Cody stayed over, but only once. I don’t know if he blamed me for my accident or just didn’t want his summer to be ruined spending it by my bedside when we both knew we’d be going our separate ways in the fall, but we were clearly over the night I fell out the window. Or over for the time being. Lots of friends came, too, but then summer plans and the excitement of getting ready for college came, and as they prepared to start their new lives, the visits and phone calls slowed to a trickle, and still I lay, unmoving, in my hospital bed.

Then one friend, Lisa D’Orazio, not a close friend but one I had always liked, surprised me by visiting one day. We had gone
to high school together, but we weren’t close, though I had always admired her. She was popular, a varsity soccer player hanging out with upperclassmen since freshman year, much cooler than I was. When she heard about the accident, though, she came to visit. Then she showed up again. And again, bringing me mix CDs of music that we both loved: Motown, old-school rap, and hip-hop. She would call, too, just to say hi, and to help to relieve the monotony of lying in my room all day.

She didn’t act like she felt sorry for me; she really seemed to want to be there, and just having her come and hang out made such a difference. It was so generous, so kind of her, and I knew I wanted to be that person, that if someone I knew was lying immobile in a bed I could be thoughtful enough to do that. Just being there, or knowing that someone else is there for you, makes every difference. Lisa had no idea at the time how much she was doing for me, but it made us lifelong friends. She is one of my favorite people in the world, and I know we’ll be there for one another no matter what.

I had a favorite nurse, Roberta, and I looked forward to the mornings, when she would be back. She would greet me with her wide smile and brusque kindness, and Roberta was the only nurse that I wanted to bathe me. Well, not bathe precisely. She would use warm washcloths to clean the parts of me that weren’t casted, slowly tilting my head back into a warm basin of water to wash my hair, and then she would gently pat me dry. When Roberta couldn’t do it, I wanted Polly. My stepmother, for the first time, was the person that I wanted most.

My parents, so loving and caring, were not what I needed right then. I did not want pity. I did not want to see their tears—more heartbreak and more worry, caused by me. Polly was what I needed. If there was anyone who was going to help me make
damn sure that I got up and walked, it was my stepmother. She got shit done. She is kind, but she is also as no-nonsense as a person gets. She loved me, but she wasn’t going to look down and see her broken stepdaughter, poor thing, who, in addition to having a devastating syndrome that would someday render her blind and deaf, might very well be left physically disabled. Nope. She was going to see Rebecca, who did not want to stay in this bed, did not want sympathy, and needed to get up as fast as was earthly possible and get to college, where she belonged.

As the doctors and the social worker discussed a possible discharge date for me, my parents decided it was time to tell me that I would not be able to attend college in the fall as I had planned. My injuries were simply too severe, they explained, and it would take me at least a year of physical therapy to become independent again. I was devastated. Though I should have realized that of course I wasn’t going to be able to leave for Michigan anytime soon, I had felt like once I was out of the hospital the hardest part would be over, but that wasn’t even close to true. My twin brother, my high school sweetheart, and all of my friends would be leaving to begin an exciting new chapter of their lives, while I stayed behind relegated to a wheelchair, working harder than I ever had in my life just to relearn the simple tasks that I had always taken for granted.

My back and all of my other limbs were broken and heavily casted, except for my right leg, and the hospital wouldn’t discharge me until I could successfully sit up in bed, stand up, pivot myself to the side, and transfer myself into my wheelchair, all on my own. I needed to be able to do this with only the use of my right leg and then wheel myself out, propelling myself, again, just using that one leg. Needless to say, my right leg became my rock, and it gave me everything it had. I practiced every day, over and
over again, until I was able to transfer myself three times in a row. I have never wanted to get out of anywhere as much as I wanted to leave that hospital room.

• • • •

I was so relieved to be going home, knowing that I was one step further in my recovery. We’d decided that I would live in the little guesthouse at Dad and Polly’s, which would be easier because it had no real stairs for me to climb from the driveway. Actually, I’d decided. I wasn’t ready to go back to my mother’s house, the scene of the accident, and I refused to move back and forth between my parents’ houses as I had been doing for so many years. Though it is really hard for me to upset people, and I didn’t want to hurt my mother, this was one of the first times when I had to be firm and clear and put my wishes and needs above other people’s feelings.

A friend of my family’s who was big into dirt bikes very kindly offered to build a few wooden ramps for me to use, so that I could wheel myself from the driveway into the guesthouse and from the bedroom to the bathroom. He also made an extra ramp for me to use to get into my mom’s house, for the day when I would be ready to return.

The ramp was my next challenge. It took me a few practice rounds to muster enough strength and force for my right leg to be able to hurtle me up to the top of the ramp in my wheelchair without my rolling backward right to where I’d started. Fortunately, it was challenges just like this one that I loved the most. Nothing made me happier than practicing something I struggled with until I’d mastered it. This would be the ongoing theme of my recovery; hard work was the only way I was going to get there.
It was the only way I was going to walk—normally, I was sure, despite what the doctors said—and it was the only way I was going to get back on track and move on to the life I was so desperate for. I knew there was no way I was going to college that fall, but I refused to believe it would take me a whole year to recover, so I set my sights on January. Then, I promised myself, I would be ready.

M
y new home consisted of a queen-size bed, with many pillows to help keep parts of my body elevated. In the beginning, Dad or Polly would come in the evenings to help arrange them so that I would be comfortable enough to sleep. On one side of the bed there was room for my wheelchair and enough space so that I could transfer myself in and out. On the other side, up against the bed, was a long table that held everything that I needed. My bed, the table, and my wheelchair became my humble little home for the next five months, everything I needed within grabbing distance.

Polly had given me a wall calendar filled with photos of puppies so that I could keep track of all of my doctors’ appointments now that I was back at home. Even that small gesture from her, having me be the keeper and organizer of my own schedule, was important to me. So little was in my power, but she treated me like an adult, able to schedule and keep track of everything I needed to do for my recovery.

That very first night, as I lay there looking around my new
home, I saw a red Bic pen lying underneath the table and I decided that I needed it. As I checked out the small collection of items on my table, I decided that the best tool at my disposal would be my wooden back scratcher with the hand at the end that I used to scratch inside my casts. The pain was still terrible sometimes, but even worse was the itch. I already had an overly sensitive sense of touch, and scratching my itches was a feeling that verged on the celestial.

I was able to reach the pen with the scratcher to pull it closer to the bed, but I still had no way of reaching down and actually picking it up off the floor. I didn’t want to have to wait until morning to ask someone to get it for me, so, with the help of my elbows, I scootched my way to the other side of the bed, put my right foot down on the floor, and pivoted my whole body just the way I’d practiced a gazillion times in the hospital before I was released.

With my right foot I pushed myself in my wheelchair around the bed as close to the table as I could. After I secured the brakes, I braced myself again with my elbows on the armrests of the wheelchair and stuck my right foot out as far under the table as I could. With a little maneuvering, I reached the pen with my foot and pulled it closer to me until I was able to pick it up with my toes and bring it to my hand.

I felt triumphant that I had found a way to do this all by myself, and I realized right then that this would be vastly different from my time in the hospital. I was not going to be lying around waiting for my broken body to heal, I was going to be the one to heal it. As I made my way back onto the bed, realizing for not the last time how grateful I was for my elbows, which were integral to everything that I could do at that time—not to mention my toes—I took the red pen awkwardly in my casted hand and
crossed out the very first day of my recovery with a bold red X on my puppy calendar. This was why I had needed the pen. For the rest of my time in the guesthouse this would be the highlight of my day—crossing off another box on my calendar each night before I went to bed, counting down the days until my next doctor’s appointment, follow-up surgery, or physical therapy appointment arrived.

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.