Still Me (8 page)

And Harry Houdini. You put him in a straitjacket and he could contort his shoulders and get out of it. In the middle of the night, sometimes at three in the morning, I'd think, I'm in a straitjacket, my whole body's in a straitjacket, I can't move anything. I can't contort my shoulders. This isn't a trick, there's nothing I can do, there's no key, nothing I can do with my body. I'm just lying here in this bed staring at the monitor.

I'd try to go back to sleep, but it wouldn't work, and I'd start to think again, the same tormenting thoughts. It always began with: This can't be me. Then it went to: Why me? Then to: There's got to be a mistake. Then finally: Oh God, I'm trapped, I'm in prison. I've got a life sentence here. I'm stuck, I'm never going to get out of this. I'm not going to survive. I can't do this and I can't do that. I can't stand up, can't move. I'm pathetic. What am I going to do with myself? I'm forty-two. I've got no life. I'm just going to be a charity case. Into my head came the desperate plea: Somebody, please, let me out. Just let me out.

I mentioned that a C1–C2 injury is like being hanged. And I remember thinking that if you survive, they let you go. They only try once; they don't pick you up off the ground and carry you back up and retie the noose. These melodramatic thoughts would play on me. My mind would race through all kinds of absurd scenes and ideas. It would have been nice if I could have used those hours between 2:00 and 7:00
A.M.
productively, but I couldn't. I was barely coping. I tried to focus on all the love and support that was coming to me. But much of the time I thought to myself: I don't care if anybody likes me or doesn't like me. I want to walk. I'll trade all this affection just to walk up a flight of stairs. The body and mind, in trying to survive, can be totally selfish. You say, Screw the rest of the world, take care of
me
. Me first. This is not fair to
me
, you know.

I think these selfish thoughts are part of the survival mechanism. That “me-me-me” is an inevitable first response. And then you need to evolve to higher thoughts—a different way of thinking. For some people this comes through religion; they're able to subsume the self into their faith. But that didn't work for me, although I tried. I'm not a religious person, but I thought: I have to develop a relationship with God right now, otherwise I'm lost. There were some nights when I would pray, but I felt like a terrible phony. I felt that I was performing, that it wasn't really coming from the center of my being, from a genuine place. My friend Bobby Kennedy once said to me, “Just fake it till you make it. The prayers will seem phony, but one day they'll become real, and your faith will become real.” But something different happened to me. I began to think: Whether or not there is a God is not so important. Spirituality itself, the belief that there is something greater than ourselves, is enough.

Dana was going through the same process. She had been raised as a Catholic but found she could not accept formal religion. After my injury she read
When Bad Things Happen to Good People
, written by Rabbi Harold Kushner, a man whose son had progeria, a terrible disease in which the victim ages rapidly and dies in adolescence. Here was a man of God, who served God, and who couldn't reconcile the fact that this could happen to him. But he finally reached a conclusion that both Dana and I could accept—that God doesn't make these things happen. We were given free will, and everything obeys the laws of nature. If you are flung over a horse's head, you very well might break your neck. It just happens. But where God comes in, where grace enters, is in the strength you find to deal with it. You may not know where it comes from, but there's an enormous power at work.

And so you may find that you try to behave in the best manner you possibly can, the most loving way you can manage at any given moment. I think that old adage “God is love” is literally true, whether or not you actually believe in God. Thinking that way helped me get past the “me-me-me”—my body, my problems, my condition, myself.

Three weeks after the operation it was time to think about rehab. I had to pick a place. People had told me—and I felt this was right—that the rehab facility is important, but that it's even more important to be near people you care about, friends and family. This pointed to the Kessler Institute for Rehabilitation in West Orange, New Jersey. Most of my family lives within a reasonable distance from there. My mother's in Princeton. Dana and Will were in Bedford, only an hour away. Almost everybody else in my family lives in New England, except for my half brother Mark, who lives in Oregon, and my half sister Alya in New Mexico.

One day in late June Dr. Marcalee Sipski, the director of the spinal cord unit at Kessler, came down to UVA with a pulmonologist, Dr. Doug Green, to see if I was ready for rehab. Dr. Sipski used her safety pin and prodded around, but I had very little feeling anywhere. I could feel along my shoulders, but that was about it. I had a little feeling in the bottom of my left foot; when somebody would do deep massage on my left foot, I could feel it. Otherwise, nothing. I really couldn't feel anything below my shoulder blades.

And then Dr. Sipski said, “I need to see whether you're complete or incomplete.” So that issue resurfaced; it had never actually been resolved. I told her that I had been classified as incomplete, but she replied that she needed to do her own assessment. She inserted a rectal tube, but I didn't even feel it. I felt absolutely nothing. Then she made the pronouncement, “Well, you're a C2 complete.” This was devastating to me. How could Dr. Jane and the people at UVA have kept telling me I was incomplete, and I was going to descend to C4, and I would get off the vent, and my phrenic nerve was working? Yes, it is working, I thought, but it's not doing anything. It may be intact, but it's not working. Intact and working are two different concepts.

Again I plummeted. I felt such loss, such confusion, such a sense of doom. The demons continued to attack—thoughts of hopelessness and despair and being in a straitjacket and not being Harry Houdini, not being a magician who could get out of it. They came at me more ferociously than ever. I felt I'd been betrayed. All these nice people with their gentle southern voices had been torturing me with lies. Sometimes I even thought that it wasn't worth going to rehab. I should just be parked someplace. If anyone wanted to talk to me, they would know where to find me, because I would be living out my days staring out the window.

So it went. Fearful thoughts, serene thoughts, spiritual thoughts, morbid, self-pitying, pathetic thoughts. After Dr. Sipski spoke to me, I felt the truth had been told. Why did everyone else keep lying? Did they think I couldn't handle the truth? Or was it just too personally painful to them to face the fact that I was a C2 complete? I couldn't figure it out, couldn't understand it. But Dr. Jane stuck to his position. He kept coming into the room, always with that sunny disposition, and he'd pat me on the shoulder and say, “I think you're going to get some deltoid soon. And if you can get your deltoid muscles back, you can begin to move your arm. It's also a sign that you've got some C4, you'll be able to breathe.” And I would just look at him but couldn't confront him. Somebody of his standing and reputation. I was in a quandary.

The letters began to mean more than ever. One came from Deborah Huntington, who was our neighbor when we were growing up in Princeton. Because there weren't enough boys in the neighborhood, we recruited Deborah and her sisters to play baseball with us. She wrote me a five-page letter about those times—remembering me making spectacular catches in the outfield, often hitting the ball over the fence into the neighbors' yard. She recalled that she held me in a certain kind of awe in those days, casting me as a sort of neighborhood hero.

I would get letters from fellow students at Cornell, or a letter from a former schoolmate at Juilliard. There were many letters from people who were spinal cord injured, telling me to fight on. I received a long, compassionate letter from a woman who said she could identify with me completely because for many years she had suffered from chronic indigestion. There were letters from people telling me about a favorite moment in a movie or play. People recalled having seen me on the stage in Williamstown or on Broadway. They were a lifeline, those letters. I needed support, I needed something positive. I would tell Dana, “Read me another one, take me somewhere. Let me go back in time, let me go back and relive those moments when I could do things.”

And there were letters that said, “You're going to go through a very morbid, self-pitying stage. But stay with it, you'll come out the other side. You'll find that a life is possible.” I couldn't believe it, especially after Dr. Sipski had been there and I'd learned about the new definition of complete. Her parting words had been: “We'll do what we can for you.” All I had to look forward to was learning how to operate a wheelchair with my mouth. And maybe learning how to use a computer with my voice.

But slowly I began to come up again, as one does from a dive in deep water. I gradually stopped wondering, What life do I have? and began to consider, What life can I build? Is there a way to be useful, maybe to other people in my predicament? Is there a way to be creative again? A way to get back to work? Most of all, is there a way to be there for Dana and Will and Matthew and Alexandra, to be a husband and father again? No answers came, but raising the questions helped.

There was one strong image I would cling to when I was alone. Someone, a stranger, had sent me a picture postcard of a Mayan temple in Mexico, the Pyramid of Quetzalcoatl. There were hundreds of steps leading up to the top. And above the temple were blue sky and clouds. I taped this postcard to the bottom of the monitor, where it was always in view. I let it become a metaphor for the future. Even as I watched all those sobering numbers on the screen, I began to imagine myself climbing those steps, one at a time, until finally I would reach the top and go into the sky.

Chapter 3

When Dana said, “You're still you, and I love you,” it meant more to me than just a personal declaration of faith and commitment. In a sense it was an affirmation that marriage and family stood at the center of everything, and if both were intact, so was your universe. Many people have known this all their lives. I did not. Up to the time I met Dana—from early childhood until I was nearly forty—I didn't believe in marriage, although I had always yearned for a family. The idea of home was confusing to me, too, because I had grown up between two families, and neither one ever seemed truly secure. This contributed to my developing a fierce independence, which had many positive aspects. But a part of me always looked longingly at other families, where there was communication, respect, and unconditional love, which provided a solid foundation for the children as they grew up.

I was born on September 25, 1952, at Lenox Hill Hospital in New York City. My father, the poet and scholar Franklin d'Olier Reeve, was a graduate student at Columbia, working on a master's degree in Russian. My mother, Barbara Pitney Lamb, had been a student at Vassar, but just before they were married, in November 1951, she transferred to Barnard. At first they lived downtown on Prince Street, and my father would take the subway up to Columbia every day, but soon they moved to a ground-floor apartment on East Eighty-eighth Street near the East River. Our building was near Gracie Mansion and a fireboat station. I rode a little fire truck around in the courtyard in the back, pushing the pedals and ringing the bell. I remember bumping along in my stroller as we headed off to Carl Schurz Park to watch the boats at the fire station.

Barbara and Franklin in the spring of 1951.

My brother, Benjamin, was born on October 6, 1953, so we are only a year and eleven days apart. My father and his younger brother, Richard, had a similar separation in age, and similar problems: in both cases the older one usually got the first crack at everything and was often preferred. When we were very young our parents used to dress us alike. Later I often joked that the only way you could tell us apart was that I had the blue mittens and Ben had the red ones. I think today most parents are much more conscious of the need to allow each child to establish his own identity. But in the early fifties there was still a tendency to lump siblings together—particularly twins or children close in age. We were often referred to as Tophy and Beejy. I remember wanting to separate myself quite early on, and I think Ben did, too.