Still Me Page 5

  So Annie would feed me, and everyone took turns reading me the mail. There was a genuine outpouring of concern and, more than that, of real affection coming from very unexpected places. And it buoyed me up. I would get through the day carried by those letters and that love.

  A security guard was stationed outside the wing. And there was always somebody sitting outside the double doors that separated the wing from the rest of the floor. Dana would wait for Will to fall asleep at the hotel and then come stay with me in the ICU. She talked to me and sang to me, even though I was often sedated. She sang all the songs that we used to sing together as a family: “This Pretty Planet” and “Home on the Range” and “Red River Valley.” Will and I used to sit at the piano singing and playing, and Dana would come in with that beautifully clear voice of hers and sing harmony. We had always loved making music together.

  Dana had very little privacy; she constantly had to deal with friends, family, and the media, still there in force. She answered all the phone calls from friends. The day after the accident there were thirty-five messages on the machine at home. She called our business manager to make sure that all of our wills and finances and insurance were in order. We had just done a lot of insurance work, including getting a disability plan, which was to prove very helpful because it provided some cash every month. We had no idea yet what insurance problems lay ahead. Dana took care of hundreds of details while we all waited to see what would happen next.

  As I was recovering from the operation, Dr. Jane and his team came in to assess my condition, to find out what sensations and function I was left with. They pricked me with a safety pin to test for possible motor response, and brushed me with a Q-tip to evaluate sensation. These tests helped them determine what my prognosis was likely to be.

  Some doctors believe that what you come out with after the operation basically remains your condition for the rest of your life. Others say that you can get recovery six months down the line, a year down the line, eighteen months down the line. One surgeon told me that five years after the operation, one of his patients suddenly could move his foot. The spinal cord is such a strange and unpredictable thing, and people’s responses are so unique, that two individuals with the same injury can have entirely different results. I heard about two patients in the same room at the same hospital with the same injury. One ended up walking, the other did not. The person relating the story concluded that one patient had more faith than the other. It’s tempting to believe that, and I do think a positive attitude helps tremendously. But I don’t believe that faith alone can put a broken spinal cord back together again.

  Dr. Jane and Dana checking on me a few hours after the operation.

  Dr. Jane is a very kind man, practically central casting’s idea of a doctor. He’s in his sixties and sort of stocky, with a gentle face, warm and modest about his skills. And he was extremely caring, but perhaps he tried to protect me too much.

  I got the feeling that he so wanted me to be well, to be better off than I was, that whenever he came to talk to me after the operation, he would sugarcoat the situation a bit. He said that I was incomplete, that I would probably descend a couple of levels. He said there was a very good chance I could get off the vent, because the phrenic nerve (which controls the impulse to breathe) was intact and the diaphragm hadn’t been damaged. I felt uplifted by all this, especially when he told me that I only had a hemorrhage in my spinal column at C2, just in the left half of the spine. There was swelling, which was to be expected, down to the C6–C7 level, but as it went down and the hemorrhage cleared up, I could get significant return of sensation and function.

  A C2 incomplete means that the spinal cord is still intact, and one might have more recovery over time. Complete means there will be no further recovery because the spinal cord has been transected or so badly damaged that there is no hope for repair. At C2 you can move your head and you can talk; at C3 you can breathe a little bit; at C4 you can breathe normally; at C5 you gain some use of your arms; at C6 you might begin to get use of your hands. So when someone injures their spinal cord, the first question is: What level? Because this will give you an idea what their future is. You will know what kind of chair they’re going to be in, whether they’re going to be on a vent or not. When I heard about Travis Roy, the Boston University hockey player who injured his spinal cord in a game, my first question was: What level? And when I heard that he was a C4, I thought: Great, he’s going to breathe. The definition of complete and incomplete had changed at a medical convention in 1992. Until then, if your spinal cord wasn’t severed, you were considered incomplete. But since the convention a spinal cord injury is only termed incomplete if the patient has sensation at the very base of the spine. I had none.

  Nevertheless, Dr. Jane continued to see the glass as at least half full. He kept coming into my room with good news. “You’re doing great. You’re going to get more recovery. You’ll get off the respirator. You’ve got some movement in your trapezius now. It won’t be long before you’ll get deltoids, and then you’ll be using your arms.” And so forth. I began to suspect that Dr. Jane simply wanted us both to feel better.

  Then one night an intern came in, to check on me. We got to talking and I asked, “So what about this bleeding that’s been in my spine? After that goes down, there’ll be a return of sensation, right?” And she said, “You don’t have any bleeding in your cord. You hardly bled at all.” I was shocked and upset. But when I questioned Dr. Jane the next day, he was annoyed. “Are you going to listen to an intern, or are you going to listen to me?”

  My spirits during those days were on a roller coaster ride. There were moments when I would feel so grateful—when a friend would come a long way to be with me, to talk to me, to cheer me up. And my family, of course, and the letters still pouring in. I used to love to listen to the people in the letters.

  But the time would come when everybody would have to go. I’d be given a sleeping pill at about ten-thirty or eleven o’clock, but by one or two it would wear off. I’d wake up and be staring at everything, staring at the wall, staring at myself, staring at the future, staring in disbelief.

  The thought that kept going through my mind was: I’ve ruined my life. I’ve ruined my life, and you only get one. You can’t say, “I’ve spoiled this one, so can I have another one, please?” There’s no counter you can go up to and say, “I dropped my ice cream cone; could I please have another one?” I thought, I’ve ruined not only my own life but everybody else’s as well. I’ve ruined Dana’s life, I’ve ruined Will’s life, I’ve ruined Matthew’s and Alexandra’s. This is going to be a huge burden on everybody. It’s not my injury, it’s our injury. Our entire family is hurt. We’ve all been destroyed by this stupid thing that happened. Over a nothing jump. For some reason, I didn’t get my hands down and break my fall. I’m an idiot. I’ve spoiled everything. Why can’t there be an appeal? Why isn’t there a higher authority you can go to and say, “Wait a minute, you didn’t mean for this to happen to me. This kind of thing doesn’t happen to me.”

  I was still in a state of disbelief and very afraid. A large part of the fear was because I couldn’t take a single breath on my own. And the connections of the hoses on these ventilators are tenuous at best. The nurses put tape over the joints, but they don’t always hold very well, and you lie there at three in the morning in fear of a pop-off, when the hose just comes off the ventilator. I had several. After you’ve missed two breaths, an alarm sounds. You just have to hope that someone will come very quickly, turn on the lights, figure out where the break is, and put it back together. But it’s not like holding your breath underwater. I can’t hold my breath. In my case, there’s no breath left in my body. When I exhale, the breath is gone.

  So when you have a pop-off, there is no air in your lungs except for a tiny amount in the nooks and crannies. If you’re pretty healthy, the percentage of oxygen that is getting to your brain can probably stay in the seventies, which means you can last a couple of minutes,
but those are very, very anxious minutes. The nurses’ station was not far away, but I was never sure how closely they were paying attention. They had many patients, I was alone in my room, and I had absolutely no control. The feeling of helplessness was hard to take.

  Becoming completely dependent on other people is a terrible adjustment to make. I lay there for a month floating among various moods and feelings—gratitude, horror, self-pity, confusion, anger. There was one doctor at UVA who was the bane of my existence. She came in at all hours of the day and night to poke and prod, and I realized I didn’t have any sensation below the trapezius level, just outside my neck muscles. She would also talk to me as if I were three. Finally, I couldn’t stand it anymore. I yelled, “Fuck you, I’m a forty-two-year-old man. You treat me like one or don’t come in this room again.” That chastened her a little bit. I know she intended no harm or discomfort, but she increased my feelings of despair and loss, humiliation and embarrassment.

  Alone for a time trying to come to terms with my situation.

  I know it may seem odd that I felt humiliation and embarrassment. But those are the emotions I tend to feel whenever something goes seriously wrong in my life. On my first flight across the Atlantic, I was given an incorrect ground speed readout by a radar controller in Greenland. He had misread the data on his screen. But the professional tone of his voice was completely convincing, and I never thought to question him. If his information had been accurate, I would have run out of fuel 200 miles west of Iceland and crash-landed in the ocean at night. That would have been the end. I expected to die, and my first thought was: I’ve done something stupid, and it will be really inconvenient for people.

  The same thought occurred when this injury happened: “How embarrassing.” Back in the Superman years, I always used to joke about needing to be very careful because I didn’t want to read a headline in the New York Post like “Superman Hit by Bus.” This accident was humiliating and embarrassing. How could I have let it happen?

  So now I felt embarrassed because my body was failing. The doctors would poke and prod, but I already knew the facts. All they could do was make me feel worse.

  And then my stepmother, Helen, came in. She is always well meaning, and I love her very much. But she showed me a letter from somebody who had a high-level injury like mine and was writing about things he’d been able to do; that he really liked his wheelchair and really liked his van, and that he could go for fifteen hours on his ventilator without recharging. In an unintentionally patronizing tone, she said, “You see, there are still lots of options open to you, so many things you can do.” I lost my temper and asked her to leave the room. I just wasn’t ready to hear that. I hadn’t accepted that I was a quadriplegic. I was still in denial, still thinking, There’s been a big mistake here. Any minute someone’s going to come in and say, “Sorry, wrong person; they meant somebody down the hall. It’s not you, you’re free to go.”

  So sometimes having relatives come to visit was hard on me, and other times it was great. Often I was angry because a few of them were talking to the press without consulting me first. There was some disagreement about what to do next, about where I should go for rehabilitation. It was a hugely stressful time. I had to get used to so many new and unpleasant things.

  There were physical therapists in the ICU. About a week after the surgery, they began to move my head a little bit with isometric pressure, even though I was still in a collar all the time. And then there was the ordeal of getting up. I had to wear special stockings, called T.E.D.s. They come up over your knees, like support hose. I hated them. I thought: Old ladies wear those things. Again: This can’t be me. Then Ace bandages over the T.E.D.s, and a binder around my waist. They would slide me into a wheelchair and sit me up very slowly, taking my blood pressure the whole time, because as I sat up my body was too weak to force the blood back up into the heart. Then I’d be wheeled down the hall to the mailroom or a little visiting room that they had set up. I could look out the window at the trees, a nice change of view from the rooftops I could see from my room.

  The days were tolerable, but the nights were still awful. The demons kept coming after me. I would torment myself, my head full of fear and self-recrimination. I never called a nurse in just to say, “I’m lonely and I’m upset.” I didn’t know how to do that. I assumed they had other, more important things to do. As I lay there I often remembered going to a state fair in New Jersey when I was a child. One of the main attractions was “The Man in the Box.” He had been placed in a wooden box and buried six feet in the ground with a tube coming up to the surface so he could breathe. For the price of admission you could look down at him through a little glass window. All you could see was his face. His eyes staring back at you and occasionally blinking were the only signs that he was alive. As you left the exhibit you could put your name and address on a card and place a bet as to how long he could stay down there.

  When I would finally fall asleep, I’d be whole again. I’d go off and do wonderful things. I’d be riding again, or I’d be with Dana and Will, or I’d be in Maine, or I’d be acting in a play. Then suddenly I would wake up and look at the upper-right-hand corner of my room and see the screen with all my vital signs going across it—my heart rate, my blood pressure, my oxygen SATs. And I’m lying there all too alert, just staring at the numbers on this screen. Little purple beeps going along. A little blue graph shifting underneath it. Very pretty colors. And I’m thinking: I’m tied to all of this, and I can’t get free. I’m tied. I’m grounded. I won’t be able to fly, won’t be able to sail, won’t be able to ride, won’t be able to ski, won’t be able to make love to Dana, won’t be able to throw a ball to Will, won’t be able to do a fucking thing. I’m just taking up space.

  It’s three in the morning and there’s no help. A nurse enters. Oh, here comes somebody to suction me. Now I’ve got to go through that pain again as they try to take more water out of my lungs. Well, at least that’s going to allow another twenty minutes to pass. Sometime, somehow, morning is going to come. No, it’s never going to come. It’s still only 4:15. Why is there a clock on the wall? They should take the clock out of here. Time doesn’t mean anything. It only measures the intervals between suctioning and being turned so my skin won’t break down. I don’t want to watch TV, there’s nothing on TV, I’m not going to spend my time watching some stupid movie at four in the morning, especially if I’m in it.

  And my eyes. I was afraid to have the bed turned away from the monitor with the heart rate and the SATs on it. I became terrified if I went below about 97 percent. I thought: Oh no, the SATs are going to drop, I won’t be able to breathe, I’m going to die. They won’t come in here and fix me, they won’t be able to do anything for me. They’re just humoring me. My thoughts would get more and more paranoid and out of control.

  When I was a kid my great heroes were Harry Houdini and Charles Lindbergh. Lindbergh because he did something against overwhelming odds: On a couple of tuna sandwiches and sheer determination, he flew for thirty-three hours across the ocean. Imagine staying awake and flying an airplane nonstop for thirty-three hours. My grandmother had been staying with the Annenbergs in Paris for a year abroad in 1927, and she rode with them out to Le Bourget and brought Lindbergh back to the house. She had seen Lindbergh, she had touched him. I’d always thought: God, there’s a hero, there’s somebody who can do it. He beat the limitations of the body, the vagaries of the weather. He got out of a difficult situation, he pulled it off.

  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.