At one point I said to Juice, “When I leave here, I wish you could come work with me.” But he said, “No. By the time you leave, you're gonna be okay. And my job is, I gotta help. I gotta help a lot of people.” That's his mission. That's why he's been there for fourteen years, earning eight dollars an hour. It's his service, his giving, his gift.
He always pushed me to do a little more. After he helped me work up the courage to go into the shower, he helped me work up the courage to sit in a wheelchair. Even that was a frightening prospect.
They brought in a chair very much like the one I have now. It has six areas of command. To go forward or back, to go to the left or to the right, to go quickly or slowly in this kind of chair, I sip air from a plastic straw or blow into it at various strengths. It took me quite a while to learn to drive it, and I had a number of mishaps in the process.
I remember practicing one Friday afternoon in the rotunda at Kessler, a large area where I didn't have to negotiate corners or hallways. On one side of this practice area a very pleasant old lady was seated at an upright piano on wheels, playing show tunes for a small group of patients, which was a Friday ritual. As she played selections from
The Sound of Music, South Pacific
, and
The King and I
, I did 360s and worked on speed control on the other side. Then I decided to head back to my room, feeling quite confident that I could go in a straight line without much difficulty. As I passed by the piano, I must have blown a little too hard; suddenly I swerved to the right, and as she continued to play “Getting to Know You,” I hit the piano at full speed and pushed it backwards about five feet. The intrepid pianist didn't even miss a beat. She simply stood up and played on as I apologized profusely and tried to shift my chair into reverse. No one in her audience even raised an eyebrow. Obviously this was a regular occurrence. I succeeded in backing away and went a little more cautiously down the hallway to the west wing. After a few weeks I learned to drive much more responsibly.
I'm so accustomed to the chair now it's like a part of my body. But in the beginning it, too, held terrors. To be put in the wheelchair, I would have to be lifted out of the bed and then lowered into the chair in a three-man lift. Three aides would disconnect my vent from the bed, carry me lying straight out, put me in the chair, then reconnect me to the vent on the chair. This meant not breathing for four or five seconds. (I didn't realize at the time that the purpose of this technique is to introduce the patient to the experience of breathing on his own.) I was frightened more than I can say: I was totally dependent on the three aides. What if they didn't reconnect me in time? What if the vent didn't work? Again, my mind would teem with all the possibilities of what could go wrong.
Not all the aides were as patient or compassionate as Juice. They would give me a look that seemed to say, “What's
his
problem?” And I felt angry at myself, and frustrated because I couldn't control my fear. I'd lie on the bed looking at the chair, and I'd think, What
is
my problem? But the chair seemed so far away. I didn't want to do it, I didn't think I'd be able to go there.
My first time in the chair, I had a full-blown anxiety attack. I was sitting back, and I panicked: I can't be here, can't do this. Get me out. I can't, I can't. I can't sit back in this chair, I don't trust it, I'm scared. Dana was with me at the time, and she said she had never seen me in such a state. But I was unable to stop it. Sitting back in the chair made me feel confined. I saw the straps pinning my arms to the rests, the seat belt, my legs strapped onto the foot pedals. I felt as if I were being put into an electric chair.
There were six or seven people around me, and I was yelling, “No, no, I can't. Don't do this to me. I can't sit here, I don't feel safe. This thing's going to tip over.” I was totally out of control. I was afraid I wouldn't be able to breathe. I thought if I sat back I wouldn't get enough air. I didn't trust the vent on the chair. I was really frantic.
These episodes of panic were not entirely baseless. One reason my fears were so great was that I had nearly died a week after I arrived at Kessler, on the night of July 5. I may still have been reacting to the terror of that night.
It began with a drug called Sygen, which many people who are spinal cord injured have been taking, although it hasn't been approved by the FDA. You need to have it flown over from Italy or Switzerland, and it's very expensive. But there is a theory that Sygen helps reduce damage to the spinal cord. Some people who have tried it think it has helped them tremendously, while others say it's done nothing. There is no conclusive proof.
But I was willing to try anything. My family ordered it, and a month's supply arrived from Italy. On the afternoon of July 5, I received my first injection of about 400 milligrams.
At about six-thirty that evening, I was in bed. Patty was in the room. I began to feel constriction in my lungs, wheezing, and difficulty breathing. It quickly got worse, and breathing became even harder. Patty went to get Dr. Kirshblum, Dr. Green, and a few more nurses. Before long emergency medical teams from two towns had arrived. I was in anaphylactic shock, and my lungs had shut down. I couldn't breathe at all.
I realized this was happening, although I could do nothing about it. My heart rate went way up, while my blood pressure dropped to about 40 over 20. I had never experienced anything like it. They boosted the oxygen supply to 100 percent, but I still couldn't take in any air. I was struggling, the doctors were shouting. It was pandemonium.
Everything was closing down. Things seemed more and more surreal as I fought for air. I felt like I was going to drown, the way you feel if you're diving and are down too deep, and you need to make it to the surface but you know you can't. Everything around me went gray. I could still hear the people in the room; they were giving me various drugs, arguing about whether they should speed me up or slow me down. They were worrying about a histamine condition I have, known as mastocytosis. Dr. Kirshblum took over.
Then I had one of the eeriest experiences of my life. I had often heard about near-death and out-of-body experiences but had always discounted them. I'd never given any credence to seeing the white light and the tunnel and all those kinds of things. But now something very strange happened to me. I struggled and struggled, fighting for air. Then, after a while, I couldn't fight anymore. And I clearly recall thinking or perhaps even saying aloud, “I'm sorry, but I have to go now.” I remember the words very specifically. Again, I had that feeling of embarrassment, that I had to apologize because I'd failed. I had fought as hard as I could but hadn't made it.
And then I left my body. I was up on the ceiling. There was no white light, but I looked down and saw my body stretched out on the bed, not moving, while everybodyâthere were fifteen or twenty people, the doctors, the EMTs, the nursesâwas working on me. The noise and commotion grew quieter as though someone were gradually turning down the volume. I watched myself lying still and saw everyone swirling around with blood pressure cuffs, stethoscopes, and needles.
There was a crash cart because they had called a code. A decision was made to give me a massive dose of epinephrine. It jump-started my heart, and my pulse shot up to some astoundingly high number, maybe 175. And then, with a jolt, I was down from the ceiling and back in my body. I felt my heart racing, my face turning crimson, my whole body pounding as though my pulse was everywhere.
Air started to come back, and I gulped it in. My blood pressure began to rise, and my mind cleared. I was seeing things again from my normal perspective, from within my body. Sounds were incredibly loud, and everything was chaotic. The epinephrine had gotten me going again. I was back.
They put me on a stretcher, and my friend Juice carried my vent so I wouldn't have to be switched to another one, because he knew how that always terrified me. They wheeled me out the door and into an ambulance, and Juice sat with me, still holding the vent. We arrived at the nearest hospital, St. Barnabas in Livingston. They wanted to put me on one of their vents, but Juice said, “No, you're not taking him off this one.” He was almost in tears. He stayed with me until midnight just to be sure I was all right.
They ran some tests, injecting me with a dye that diffuses throughout the body in preparation for an MRI. By about seven-thirty or eight o'clock I was stabilized and feeling better. They gave me tranquilizers, and I was admitted to the hospital.
Dana and Will knew nothing about all this. They had left Kessler just before 6:30 to have dinner at a nearby diner. As Will was eating his spaghetti, he said, “Look, ambulance. Look!” He had always been fascinated by flashing lights and ambulances. Neither of them suspected that I was inside this one. An hour later word reached Dana back at Kessler, and she came over and stayed with me.
I spent the next three days in intensive care. On the second day I asked to try the Sygen again. I felt that if this was a drug that might actually help me, but if I was unable to use it, it would be a terrible loss. Nobody had ever had an allergic reaction to Sygen before. I wanted to be sure. With all the doctors and nurses around me, they introduced the drug again. But when I started to feel the wheezing and the clamping down in my chest, I had to tell them to stop because I was having the same allergic reaction. They gave me a shot of epinephrine right away, and that was my last experiment with Sygen.
My confidence was shaken by this episode, yet I also felt strengthened by it. Once again, I had survived. The experiences with the shower and the wheelchair had a similar effect. I began to believe that I was safe and that I was improving. Whenever he walked into the room, Juice would point out something new that I had done, something that was better than the day before. And when Dana would arrive he'd say, “Here comes your medication, mon.” Juice took real joy in seeing the healing effect my family had on me. His lightness of spirit raised ours.
Kessler has an intercom system wired into every room. Often the aides would be paged for a lift or some other assistance. I was in Room 118, and Juice and I would hear, “Juice, you're needed in Twenty-eight.” He'd always respond, “I can't, mon, I'm on the bobsled.” This routine started because one night we watched the video of
Cool Runnings
, about the Jamaican bobsled team in the 1988 Olympics. We started joking about it.
Juice said that sometime for fun we'd put ourselves on a bobsled: the two of us plus Charles, another favorite aide, with Patty in the back. Together we'd go flying down the bobsled run. So whenever Juice was with me we played at being on the bobsled. We were speeding down and couldn't get off until we reached the bottom. Whenever he was paged, he was “on the bobsled.” It was his way of saying that he was busy and wasn't going to leave me to take care of somebody else. When it was my turn he would focus on me completely, then he'd do the same for the next person. It was a simple little joke, but I clung to it. The picture of the four of us zooming down at eighty-five miles an hour was such a lovely image of togetherness, excitement, possibility, absurdity. And freedom.
Juice often said that he had liked me as an actor but that now I would become a great director. He said, “You're gonna direct the next bobsled movie. You'll do
Bobsled Two.
” Then he'd laughâhe always cracked himself up. He would shake both his hands so that the fingers would snap against each other, and he would laugh so hard that he doubled over. We could always find something to laugh about. His face would crease up so much that his eyes would almost disappear.
I had to go to bed at 6:30 every evening because I was only allowed to sit up for a limited number of hours. A decubitus ulcer had developed on my sacral area, where pressure had caused my skin to break down. So I couldn't sit for too long. The wound eventually penetrated to the bone; it was so big that you could put a hand inside it. The doctors wanted to operate, which would require taking skin from my hip and grafting it over the wound. I hated the thought of one more invasion of my body, one more manifestation of helplessness. I said, “No, you've got to let me try to heal it. What do I need to do?” I had to increase my protein intake and stay in bed for eight days.
I didn't think I could stand eight days in bed. But Dr. Kirshblum made it clear that if I wanted to avoid an operation, I had to stay off my backside. So I lay on my side, which was extremely uncomfortable; this position compresses your shoulders and contracts your lungs, so you take in less air. My SATs dropped, provoking more anxiety attacks. I hated being turned on my side, but I knew it had to be.
Even in my nice private room, the view from the window was of a brick wall. But the wall wasn't very high because Kessler is a one-story building, so I'd look at the roof, and the clear blue sky and clouds above it. I daydreamed about climbing that wall, then going up on the roof, then with a running start, getting away, a prisoner escaping.
As the summer wore on I would sometimes sit outside. I couldn't be left unattended in case of a pop-off, and I was still on oxygen, so a nurse and an O
2
tank went with me everywhere. I would stay out in the late afternoon, about four-thirty or five o'clock, when the day started to cool down. Out on the terrace, gazing at clouds for hours at a time, I felt very peaceful.
But on other days I couldn't bear to go out and look at those clouds. It was too painful; I wanted to be up there in my sailplane, gliding underneath them the way I used to. One day the clouds could be a wonderful source of serenity and reassurance; another day, a source of bitter resentment.
I felt the same way about Kessler. Some days it was a warm and friendly place of safety, a place where I would get better. Other days it felt like a prison where I had been condemned to spend an indefinite amount of time. And I would think: How do I get out? Anything to get out. I'd joke with Juice about a jailbreak.