From May until December I ate virtually nothing. I had developed an extremely keen sense of smell, a typical consequence of a spinal cord injury. Once I asked Dana to order Chinese food for us; we were going to eat and watch a movie together. But when our order arrived it made me nauseous. Dana had to eat at the nurses' station and give my portion away.
At lunchtime, while most of the other patients went to the cafeteria, I would go to the lounge and gaze out the window. At two o'clock it was back to physical therapy. I'd be lifted out of the chair again and placed on the mat. Erica would range me again, and try to get my head moving a little bit more. She was always very patient. At three it was back to Occupational Therapy. By four the sessions were over.
There were days when I didn't make any progress, or even regressed. The worst days were when Bill Carroll, the respiratory therapist, would come to take a vital capacity, a test to see how much air you can move on your own. The therapist takes a little meter, sticks it on the trach and closes it off. Then the hose from the vent is removed, and you try to take in as much air as you can by using your diaphragm, neck muscles, shoulder muscles, and by raising your head. In other words, “any way you can get it.” As you exhale the meter shows how many cc's of air you've been able to take in with this maximum effort.
I couldn't stand it. Back in Virginia, Dr. Jane had predicted that with time I ought to be able to get off the respirator and breathe on my own. But here I was failing miserably. To even consider weaning yourself off the ventilator, you need a vital capacity of about 750 cc's. But I could hardly move the needle above zero.
Bill did another test, called an NIFânegative inspiratory forceâthat measures the effort your muscles are making as you try to take in air. First you exhale completely. Then the trach is closed off again, and the therapist measures the effort your muscles make as they attempt to pull in air. But in this test you don't get a breath; it is strictly a measure of muscle strength. Again, I could hardly move the dial. I thought: What's going wrong? Why can't I do this? They lied to me in Virginia. They were only trying to cheer me up. This is impossible.
Whenever I saw Bill Carroll coming around with his instruments, I was filled with dread. Like almost everyone there, he was very well meaning, and he would try to cheerlead. He'd shout, “Go, go, go, go, go.” But nothing happened. The dial didn't move. Finally I rebelled, out of sheer frustration. At the next team conference I said, “I can't eat, so don't make me eat. I can't do this breathing, so don't make me breathe. I can't do any of it.” And they let me off the hook. They didn't make me do it anymore. The philosophy at Kessler is that you are the leader of your own team. And to a large extent your progress depends on how much motivation you bring to the work. If you want to just sit in bed and do nothing, you can. Nobody actually
makes
you do anything. This is not simply capitulation on their part; they are trying to get you to take responsibility for yourself.
At about this time I had to decide if I was well enough to attend the annual fund-raising dinner of The Creative Coalition, scheduled for the seventeenth of October. As one of the founders and recent copresident, I felt a strong obligation to attend, especially because as far back as January I had asked my close friend Robin Williams to be one of the two honorees of the evening. The Creative Coalition was founded in 1989 by Ron Silver, Susan Sarandon, myself, and a number of other celebrities to bring certain issues before the public to try to effect change. We were in the unique position of having access to the media as well as to key players in Washington. Our focus was mainly on the National Endowment for the Arts, homelessness, the environment, and campaign finance reform. Robin was to be honored for his appearances on HBO with Billy Crystal and Whoopi Goldberg for Comic Relief, which had raised millions of dollars to help the homeless. After consulting with Dr. Kirshblum and making special arrangements for Patty and Juice to come with me, I told the board of TCC that I would attend and present Robin his award.
No sooner had I agreed than it dawned on me how challenging this short trip to the Hotel Pierre was going to be. It would be the first time I would be seen or heard in public. I wondered if I would be able to address the audience or if I would be too nervous to speak at all. Would I spasm? Would I have a pop-off? I also knew that getting in and out of the hotel would require well-coordinated security, because the press and photographers would be extremely aggressive in their efforts to get the first pictures of me since the accident.
Dana and I talked it over and decided that the psychological advantage of keeping a long-standing commitment outweighed the risks of just getting through the evening. Robin put his own security people at our disposal. We rented a van from a local company, Dana dusted off my tuxedo, and on the afternoon of the seventeenth I finished therapy early and braced myself to go out into the unknown.
I vividly remember the drive into the city. For nearly four months I had been cruising the halls of Kessler in my wheelchair at three miles per hour. Driving into the city at fifty-five mph was an overwhelming experience. All the other cars seemed so close. Everything was rushing by. As we hit the bumps and potholes on the way in, my neck froze with tension and my body spasmed uncontrollably while I sat strapped in the back of the van, able to see only taillights and license plates and the painted lines on the pavement below us. As we pulled up to the side entrance of the Pierre, Juice and Neil Stutzer, who we hired to help us with the logistics and accessibility, taped sheets over the windows to protect us from the photographers. There were hundreds of them, straining at the police barricades that had been set up to give us room to park. The block had been sealed off, and mounted police patrolled the street. A special canopy had been constructed that reached from the side door of the hotel to the roof of our van. Once that was in place I was lowered to the ground and quickly pushed into the building.
We made our way through the kitchen to the service elevator. As I went by, the kitchen workers stood respectfully against the wall and applauded. I was in something of a daze, but I managed to nod and thank them. Soon I found myself in a suite on the nineteenth floor, where I was transferred into a hospital bed to rest and get my bearings. I had made it this far, but the whole experience had been much more intense than I had anticipated, and the evening was still ahead of me.
Soon it was time to get back in the chair and make all the final adjustments before joining a special reception of friends and honored guests. I wheeled into the suite's living room to find my friends and colleagues from TCC as well as Barbara Walters and Mayor Giuliani, Robin and Marsha, and a sea of other faces, all waiting to greet me and wish me well. For a split second I wished a genie could make me disappear. Somehow I made it through the reception, occasionally doing weight shifts in my chair while Patty discreetly emptied my leg bag and checked my blood pressure. Finally the guests went down to dinner, and I was left alone with Dana to recover. She hugged me but didn't need to ask how I was doing; she could tell that even though I was white as a sheet, I was happy to be out in the world again.
We watched the evening's entertainment on a closed-circuit TV until it was time for me to prepare to go onstage. A special ramp had been built from near the kitchen entrance to the stage of the grand ballroom. Black drapes had been hung to shield me from the audience until it was time for me to go on. At last the moment came. I heard Susan Sarandon introducing me from the podium, and suddenly Juice was pushing me up the ramp and onto the stage. As I was turned into position, I looked out to see seven hundred people on their feet cheering. The ovation went on for more than five minutes. Once again I had mixed feelingsâof gratitude, excitement, and the desire to disappear. At last the applause died down, and the audience lapsed into an intense silence. A blind person walking into the room probably would not have been able to tell that anyone was there.
In a moment of panic I realized that I hadn't prepared any remarks. All my attention had been focused on the practicalities of the evening. Luckily, a thought popped into my head, and I went with it. I said, “Thank you very much, ladies and gentlemen. I'll tell you the real reason I'm here tonight.” (A long pause, as I waited for the ventilator to give me my next breath.) “When I was a senior at Princeton Day School (another pause for breath), my English teacher George Packard once asked a student, âWhy weren't you here yesterday?'” (Another pause as I tried to form my thoughts.) “And the student replied, âSir, I wasn't feeling very well.'” (Now I knew where I was going.) “And George Packard replied, âThe only excuse for nonattendance is quadruple amputation.'” I could feel the audience holding their breath. “âIn which case, they can still bring you in a basket.' So I thought I'd better show up.” A huge laugh and applause. I'd made it.
The rest was easy. I introduced Juice as Glenn Miller, talked about how much I'd missed everyone at TCC, talked about Robin and his accomplishments, then brought him up onstage. For the next twenty minutes he and I bounced off each other. He took the curse off the wheelchair, going around behind it and pretending to adjust all the controls, referring to my breathing tube as a stylish new necktie, and suggesting that I use the chair for a tractor pull. He told the audience that I had to be careful with the sip-and-puff control; if I blew too hard into the tube, I might pop a wheelie and blast off into the audience. The evening was transformed into a celebration of friendship and endurance. A large group of people, many of whom were strangers, were suddenly drawn together into a unit that felt almost like family.
I had promised Dr. Kirshblum I would be back at Kessler by midnight. We joked about the van turning into a pumpkin as we said good night to everybody and hustled through the back hallways of the Pierre and out into the street. We managed once again to get past the paparazzi. (The few official photographs that had been taken of the evening were sold around the world the next morning for nearly $150,000, which we donated to the American Paralysis Association.) Now as we bounced along over the potholes and through the Lincoln Tunnel back to New Jersey, I hardly noticed the rough ride. Dana, Juice, Patty, and I were practically babbling with excitement about the evening. We pulled into the parking lot at Kessler and forced ourselves to be quiet as we rolled out of the elevator past all the sleeping patients and into the safety of my room. Dana had commandeered a nice bottle of Chardonnay from the suite at the Pierre. We found a corkscrew and some paper cups and drank a toast to this milestone in my rehabilitation.
Soon I realized that I'd have to leave Kessler at some point. A tentative date was set for sometime between Thanksgiving and mid-December. I thought: God, I've totally given up on breathing. So what am I going to do, stay on a ventilator for the rest of my life?
There were other possibilities. One option was phrenic pacing, a drastic and dangerous procedure. Batteries are surgically inserted into your chest to stimulate the diaphragm. After the implantation you have to stay in intensive care for months of constant monitoring. The risks are enormous. Batteries fail. Phrenic nerves can be damaged by the constant electrical impulses. The procedure frees you from a ventilator, but the outcome can be fatal. Other techniques were suggested to me, but none of them worked very well. A mouthpiece could be rigged on my wheelchair. I would have to take a breath through the mouthpiece, then turn to the sip-and-puff on my chair and try to drive it. The idea was to gradually reduce dependence on the ventilator. But the breath control needed to operate the chair would have made this far too complicated and dangerous. I could just see myself driving along, then turning my head for a breath from the mouthpiece and losing control of the chair. So I dismissed that idea as well.
But my diaphragm had been doing nothing since May, and now it was the end of October. From my study of the spinal cord handbook, I was aware that if I allowed it to atrophy, I might never be able to use it. I decided I
had
to make another attempt to breathe on my own.
They brought in Dr. Thomas Finley from Kessler's research department. He wanted to place electrodes all over my chest to see if there was any muscle activity that would give some hope. But Dr. Kirshblum advised against it, because of the danger of puncturing a lung when the electrodes were inserted.
I announced that on the first Monday of November, I was going to try again to breathe on my own. At 3:30 in the afternoon of November 2, Bill Carroll, Dr. Kirshblum, Dr. Finley, and Erica met me in the PT room. And I remember thinking: This is it. I've
got
to do something, I have simply
got
to. I don't know where it's going to come from, but I've
got
to produce some air from someplace.
Dr. Finley said, “We're going to take you off the ventilator. I want you to try to take ten breaths. If you can only do three, then that's the way it is, but I want you to try for ten. And I'm going to measure how much air you move with each breath, and let's just see where you are. Okay?”
And I took ten breaths. I was lying on my back on the mat. My head moved up as I struggled to draw in air; I wasn't able to move my diaphragm at all, just my chest, neck, and shoulder muscles in an intense effort to bring some air into my lungs. I was only able to draw in an average of 50 cc's with each attempt. But at least it was something. I had moved the dial.
We came back the next day, and now I was really motivated. I prepared myself mentally by imagining my chest as a huge bellows that I could open and close at will. I told myself over and over again that I was going home soon and that I couldn't leave without making some real progress. Dr. Finley asked me to take another ten breaths for a comparison with yesterday's numbers. I took the ten breaths, and my average for each one was 450 cc's. They couldn't believe it. I thought to myself: All right. Now we're getting somewhere.