Still Me Read online

  So at first I thought this was just another temporary problem. I needed some kind of surgery, but I’d be up and around before long. It was only after the doctors left that I really began to absorb what they had told me: This is a spinal cord injury, a paralyzing injury. I had the horrible realization that this was different.

  The doctors had explained my condition, and now I understood how serious it was. This was not a C5–C6, which means you’re in a wheelchair but you can use your arms and breathe on your own. C1–C2 is about as bad as it gets. Why not die and save everyone a lot of trouble?

  Dana came into the room. She stood beside me, and we made eye contact. I mouthed my first lucid words to her: “Maybe we should let me go.” Dana started crying. She said, “I am only going to say this once: I will support whatever you want to do, because this is your life, and your decision. But I want you to know that I’ll be with you for the long haul, no matter what.” Then she added the words that saved my life: “You’re still you. And I love you.”

  If she had looked away or paused or hesitated even slightly, or if I had felt there was a sense of her being—being what?—noble, or fulfilling some obligation to me, I don’t know if I could have pulled through. Because it had dawned on me that I was going to be a huge burden to everybody, that I had ruined my life and everybody else’s. Not fair to anybody. The best thing to do would be to slip away.

  But what Dana said made living seem possible, because I felt the depth of her love and commitment. I was even able to make a little joke. I mouthed, “This is way beyond the marriage vows—in sickness and in health.” And she said, “I know.” I knew then and there that she was going to be with me forever. My job would be to learn how to cope with this and not be a burden. I would have to find new ways to be productive again.

  My two older children—Matthew, fifteen, and Alexandra, eleven—my children with Gae Exton, had come over from England. I had met Gae when I was shooting the first two Superman films in London. Although we never married, we had been together for nearly ten years until an amicable split in February 1987. Dana had called them, and all three flew over right away. During the first three days of their visit, all they could do was come into the room and help swab my mouth with sponges or wipe my face with a damp cloth. When I finally regained consciousness, I saw them gathered around me, putting on their bravest faces. And I understood in an instant how much they needed me. In spite of the terrible condition I was in, I could see how glad they were that I was still alive. Despite the ugly equipment that kept me immobilized, each one of them managed to touch me or give me a gentle hug.

  At first Will was too terrified to join us in the ICU. He was even afraid of Dana visiting me. It took him several days to overcome that fear. But when he finally did come in and saw that Dad was the same, just lying down, he had a dramatic surge in bravery. It was as if he’d overcome the greatest nightmare of his life.

  Soon after, Dana told me about something remarkable. I used to take Will for swimming lessons in Mt. Kisco, just after he turned two. Part of the routine there was that the kids had to jump off the side of the pool into Dad’s or Mom’s waiting arms. Will was afraid to jump off the side, and I’d have to really coax him to make the leap. I’d have to get closer and closer until he felt safe. But now, right after his visit with me, he was making huge jumps off the side of the pool at the Omni Hotel. He didn’t want his water wings anymore, and he dared to go underwater. I watched videotapes of him swimming during that month in Virginia and was amazed to see this new courage.

  In the evenings I’d watch the Stanley Cup finals. There was always somebody visiting me, and Dana was just down the hall. Alexandra and Matthew had flown back to London to finish the school year. But now Will would come in and out all the time. I was so grateful that he didn’t seem to be uncomfortable or afraid of me. He’d learned all the nurses’ names and made himself at home. He’d come in and I’d be connected to all kinds of IVs, tubes, and hoses and things, with a trach, a tracheotomy tube coming out of my throat, like the one I have now. But Will could look past all that and see me, and want to be with me. He would climb up on the bed and get comfortable and we’d watch the hockey games together.

  This meant so much. If he’d avoided me or seemed scared or been afraid to touch, I would have felt utterly rejected. But Will’s shiny little just-turned-three-year-old face coming through the door to spend time was always a great lift.

  I realized: I can’t drift away from this. It wouldn’t be fair to my family. I don’t want to leave. This realization, following what Dana had said, ended my thoughts of suicide.

  My mother had come down from Princeton and was immediately led into the ICU. She saw me unconscious and immobilized, and was told that I had only a slim chance of survival. She became distraught and began arguing strenuously that the doctors should pull the plug. They told her to calm down, to wait and see what would happen. Of course she didn’t want me to die, but she simply could not stand the thought of my living in such a terrible condition. She knew what an active life I’d always led—that for me being active and being alive were the same thing. In the past I would have agreed with her.

  She kept insisting on this until a real fight erupted. She spoke to the chaplains in the hospital, and to the doctors. But she avoided confronting Dana, because she knew how strongly Dana felt that it was my decision, mine alone. At one point, in a moment of real despair, my mother told Dana’s father, “Tomorrow, we’re going to do it.” And Chuck Morosini replied, “Wait a minute. You’re not doing anything.”

  In my ICU room I was protected from the drama and controversy going on outside. My younger brother, Ben, who had come down from Boston, sided with Dana and Chuck. Together they persuaded my mother to calm down and think things through.

  Dana continued to take care of everything. She conferred with my agent, Scott Henderson, and my publicist, Lisa Kasteler, both good friends. She was bombarded by the media, who wanted any scrap of information about my condition. She wasn’t ready to face them, so Ben held a short press conference the day after my operation, while Dana contacted more of our friends and relatives all over the country. She did all this on two hours of sleep each night.

  How she held everything together during those days, I don’t know, but a lot of what she did was for Will’s sake. She tried to keep him from seeing the calamity written on everybody’s face. Her inner strength and ability to cope with the situation still seem amazing to me. Will’s third birthday was on June 7; my operation took place on the sixth. Somehow Dana organized a birthday party for him, with a hired clown and lots of nice people from Virginia who Will had never met before. They had a party and he had fun, he had a good day. Later, when I saw the videotape, I couldn’t stop crying. It was excruciating to watch him celebrating without me. He should have been home with all his friends and neighbors and family, the three of us hugging one another as he opened his presents.

  The staff and administration at UVA were unbelievably kind to us. Dr. Jane offered us the use of his house in Charlottesville, and Becky Lewis, the hospital administrator, offered to move out of her apartment. Sometimes when Will came to visit, the nurses would outfit him in little scrubs, let him play with their stethoscopes, and make balloons out of rubber gloves. The staff never lost patience with the endless questions from my family and friends. We had a wing of the hospital all to ourselves and were never charged for the security personnel or the extra rooms. And they provided us with an office, where Dana was set up with phones and a fax machine. We called it the mailroom because it overflowed with thousands of letters pouring in from all over the world. Many boxes of unopened correspondence spilled out into the hallway.

  Dana and Will always had plenty of food, a refrigerator full of stuff brought by friends. There was a lounge area, which was great for Will because it had a view of freight trains below and of the medevac helicopter taking off and landing, which he loved. Dana hated it—the sound of Pegasus bringing more sick and injured people t
o the hospital. Another room became Dana’s bedroom, while Will slept at a nearby hotel with her parents.

  In the days before the operation, I had quite a few visitors. Helen and Chuck Morosini had been the first to arrive. They reached the hospital at nine o’clock Sunday morning, having dropped everything and traveled through the night. Another early visitor was Gregory Mosher, who was producing the film of American Buffalo in Rhode Island with Dustin Hoffman. Greg and I had been good friends from my days as an acting student at Juilliard. Over the years we had lost touch, but when he heard about the accident on the radio, he caught the first flight to Virginia. I was surprised and extremely moved.

  By then I was on fewer drugs and more able to communicate. My parents, divorced for many years, were both with me. My half brother Jeff Johnson had come down from Vermont. My wonderfully kind aunt, Annie Childs, my father’s younger sister, was there. My great-aunt Hellie, still beautiful in her eighties, had come. Scott Henderson was there. Everybody had gathered.

  As the day of the operation drew closer, it became more and more painful and frightening to contemplate. In spite of efforts to protect me from the truth, I already knew that I had only a fifty-fifty chance of surviving the surgery. I lay on my back, frozen, unable to avoid thinking the darkest thoughts. Then, at an especially bleak moment, the door flew open and in hurried a squat fellow with a blue scrub hat and a yellow surgical gown and glasses, speaking in a Russian accent. He announced that he was my proctologist, and that he had to examine me immediately. My first reaction was that either I was on way too many drugs or I was in fact brain damaged. But it was Robin Williams. He and his wife, Marsha, had materialized from who knows where. And for the first time since the accident, I laughed. My old friend had helped me know that somehow I was going to be okay.

  And then we spent time together. He said he would do anything for me. I thought: My God, not only do I have Dana and my kids but I have friends like Robin and Gregory who truly care. Maybe it can be okay. I mean, life is going to be very different, and it’s going to be an enormous challenge, but I can still laugh, and there’s still some joy.

  One day most of the family was together in the mailroom, busily sorting through stacks of letters. Will was on the floor playing. He looked up and said, “Mommy, Daddy can’t move his arms anymore.” Dana said, “That’s right, Daddy can’t move his arms.” “And Daddy can’t run around anymore.” “That’s right; he can’t run around anymore.” “And Daddy can’t talk.” “That’s right; he can’t talk right now, but he will be able to.” Then Will paused, screwed up his face in concentration, and burst out happily, “But he can still smile.” Everyone put down what they were doing and just looked at one another.

  More family members came down, and more friends. My half brother Mark and his wife, Tracy, from Oregon; my half brother Brock and his wife, Polly, from Massachusetts. Dana’s sister Adrienne came from Cape Cod to be with her and help take care of Will. Michael Stutz, my sailing buddy from Martha’s Vineyard, made the long trip. Steve Collins and his wife, Faye Grant, brought messages of hope and support from many of my friends in New York. I began to understand that there’s so much love around—–love waiting to be shown. As a person who tended toward privacy and keeping my feelings to myself, I’m not sure I ever understood that before.

  After ten days in intensive care, I was ready for the operation. My lungs had cleared—now I would be able to lie on my stomach for seven hours without choking or suffocating. One of the greatest concerns of the surgical team was how to turn me facedown without doing further damage to my spinal cord. Eventually Dr. Henson held my head and ten people very slowly turned me over. They put me on a table with a cutout for my face. For the next eight hours they patiently worked to put me back together again.

  At the time I had no idea that the kind of surgery they would perform on me had never been done before. Dr. Jane had to reattach my head to my spinal column without causing brain damage while giving me the possibility of movement. He placed wires under both laminae—the bony coverings of the spinal cord. He took bone from my hip and squeezed it down to get a solid fit between C1 and C2. Then he put in a titanium pin the shape of a small croquet wicket and fused the sublaminal wires with the first and second vertebrae. Finally, he drilled holes in my skull and passed the wires through to get a solid fusion.

  What Jane did, in short, was put my head back on my body. Nearly a year later he visited me in Bedford. I said to him, “I just have to tell you that while I was in rehab I had time to look at a real skeleton, and at the spine, and I had time to look at anatomy books and read the full discharge report of what you did during the operation. You performed a miracle. I want to thank you for giving me my life.”

  I’m glad I didn’t know ahead of time what they were doing. As they wired the titanium pin in place, time and time again their tools came within a sixteenth of an inch of the brain stem. But they operated flawlessly. Even now, looking back, I can hardly believe what they accomplished.

  When I came out of the surgery, I looked like a prizefighter whose face had been badly pummeled. I was almost unrecognizable. Few operations are as perilous as those dealing with a C1–C2 injury. Thirty-one pairs of nerves sprout from the spinal cord. Closest to the brain are the eight cervical nerves that process information to the neck, shoulders, arms, and hands. Before the operation I could only move my head, but head-turning muscles are controlled by nerves within the brain, not the spinal cord. A year later I was able to shrug my shoulders and breathe on my own for short periods of time, meaning that nerves at the level of my first, second, and third cervical vertebrae had begun to function again. Most spinal cord patients can expect to “descend” (to recover function) two levels below their injury.

  And that is about where I am now. Movement of my biceps may come if nerves at the fifth cervical vertebra recover, some hand function would come with the sixth, triceps with the seventh, and, with the eighth, more hand functions—those involved in picking up a knife and fork. If nerves at C11 were restored, I could move my torso, and control of the hips and legs would return with recovery of nerves in the five lumbar vertebrae.

  But all of this would require tremendous progress in spinal cord research. As of now, no C1–C2 has progressed beyond the C4 level. Without nerves working in the sacral area of the spinal cord, I cannot control bowel or bladder movements and have little sexual function aside from involuntary contractions. Yet I’m very lucky. If the paramedics hadn’t arrived so quickly, if I had come to UVA when Dr. Jane was away, if I had had a less brilliant surgeon, if I had gone to compete in Vermont and suffered the same injury, I would not have survived.

  The staff at UVA continued to be extremely attentive to Dana and Will and to me. The nurses were so gentle. I still remember their sweet southern voices, trying to strike the correct balance between being sympathetic and being straightforward. One morning a favorite nurse, Joni, arranged for me to be taken up on the roof of the hospital to watch the sunrise. The orderlies and security people stood back respectfully as Dana and I held hands and watched the sun come up over Charlottesville.

  My family began to read me some of the letters that were pouring into the hospital. The accident had been on the news pretty extensively. There were telegrams from heads of state. There was a letter from Bill Clinton.

  In fact, the president had called the hospital to speak to Dana and convey best wishes to me. At the time Dana was in the ICU with me and couldn’t break away, so she asked if he could call back in five minutes. Then the phone rang—the only one on our floor—and it was my half sister Alison calling from Albuquerque. Dana said, “Hi, glad you called, but I can’t talk now, I’m waiting for the president.” Undaunted, Alya replied. “Oh, that’s great, terrific, so how’s Toph—and what’s happening? What are the doctors saying?” Dana kept telling her, “President Clinton is calling.” But Alya was very concerned about me, and wouldn’t get off the phone. Five minutes went by, then ten, and the president of the United St
ates couldn’t get through. He finally had to give up and get back to running the country.

  He ended up writing a letter. Ever since then he and Hillary have stayed in touch with greetings, encouragement, and birthday messages. And whenever we’ve called the White House, we’ve had far less trouble getting through than the president did in Virginia.

  Greetings came from England, from Australia, from everywhere—from people I’d known since third grade, people I hadn’t thought about in years, people I had never realized had any interest in me. Eventually we received over 400,000 letters. People are amazingly kind.

  I was particularly grateful to my aunt Annie. After the operation, I was losing weight fairly rapidly. I had no appetite, but I really needed to eat. I’d had nothing but flavored swabs, and now I needed something more. Since my arrival at the hospital, I had lost nearly fifteen pounds. A test to see if my swallowing mechanism worked showed that it did. I was able to eat, but the hospital food was too unappealing.

  Annie and Faye Grant arranged with a local restaurant to prepare whatever I wanted. The chef couldn’t have been more accommodating, promising, “I’ll stay late, I’ll come in early. I’ll cook him anything.” He wouldn’t let us pay for any of it either; he just wanted to give something. Annie and Faye would come back with a piece of fish or a dish of pasta—food that I could tolerate—and Annie would feed me.

  It took a while to get used to the idea of being fed. It’s very, very hard not to feed yourself. You begin to realize how much you have to depend on other people—when you want a sip of water, when you need to scratch your nose, everything. It takes time, even though everybody is so willing to help.