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 everybody—there were fifteen or twenty people, the doctors, the EMTs, the nurses—was 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 laugh—he 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 someti
mes 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 O2 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.
I received a surprisingly large number of letters from faith healers, psychics, experts in alternative medicine, and assorted crackpots. It was hard to tell them apart. One man was especially persistent. He described himself as a healer who had a large practice in his native Ireland and believed that merely by the laying on of hands he could cause me to regain both sensation and motor function. At first I placed his letters in the crackpot pile. Then he began calling Kessler on a daily basis. He was so insistent, even desperate, to help me that my resistance wore down. When he offered to come over at his own expense and not charge for his services, my curiosity got the better of me, and I agreed to give him a chance. Perhaps this was a sign of my own desperation.
The very next day he arrived. He was about five feet three and wore a bright green jacket. I couldn’t help thinking that a leprechaun had materialized to save me. It had been agreed that he would only be allowed to work on me with Dr. Kirshblum and one of the nurses present. Off came the green jacket, he rolled up his sleeves, and with nonstop commentary about his past successes he went to work. He explained to the curious onlookers gathered in the room that he would locate points of pain or “distress” in the body and apply intense pressure to them with his hands. Endorphins would then rush to those locations, causing the pain to subside. I explained to him that I felt no pain whatsoever. Undeterred, he began to work on my upper body and arms. He pressed and asked if I felt the pain. I replied, “Not at all.” He tried other locations, always with the same response. All of a sudden, my right arm spontaneously moved as he was putting pressure near my elbow. “There we go!” he proclaimed. “The energy fields have been restored, allowing him to move.”
With this statement his credibility was obliterated. I had simply had a routine spasm, caused by his hand gripping my arm. In an able-bodied person the brain directs an appropriate reaction to any kind of stimulation. If a fly lands on your leg, the brain processes the information and tells it not to react with wild, uncontrollable movement. Because this connection to the brain is missing in a person with a spinal cord injury, there is nothing to stop the body from overreacting. Spasms can also be caused by fatigue, infection, or tension in the body.
The leprechaun was the only one in the room who didn’t understand what had happened. “That’s enough for today,” he announced decisively. Dr. Kirshblum and I shared a glance. The next morning he was on a plane back to Ireland.
Episodes like that were ultimately very depressing. Fortunately, my down moods didn’t last very long. I’d descend into a place of real gloom, then climb back up again. Sometimes the sight of Dana walking into the room would save me. Or Juice coming in and doing something silly. Sometimes I’d go down the hall and visit my friend Kirk, who had been a minister. I would talk to him about my struggle with religion and with belief in God. He never lectured me or tried to change my point of view, which I greatly appreciated. It was a tremendous relief when he would say something as simple as, “God is in the way you look at your son.”
Sometimes when Dana and Will were visiting, we would go out into the courtyard, where there was a little tree. It was only about ten feet high, but Will would delight in climbing it, and delight in us watching him. That helped to get my attention off myself.
Patty was instrumental in preparing me to go back into the world. She has more energy than three people put together. She’s about five feet seven and slight, a Jersey girl with a Jersey accent. She says “coo-ough” and “joo-aw.” She’d wear her dark blond hair in a bun like a dancer and glide around the room in her colorful uniforms. One had brightly colored fish on it. She did everything with relentless efficiency. If you said, “Gee, I’d love some ginger ale,” there’d be a six-pack of it in your icebox a moment later. She was always challenging me, too; that was her special gift.
Patty helped me break through my arrogance and denial. Juice approached me with evangelical zeal about my mission and my purpose; Kirk helped me to see that I was still a worthwhile person. But Patty made me confront my condition. Her attitude was, “Let’s face it.”
In the early days she would stay in my room. From 3:00 to 11:00 I was assigned “one-on-one,” which meant that I was her only patient. And rather than spending her time at the nurses’ station, Patty would push me further and further into looking at myself and my circumstance—into confronting being a quadriplegic. I’d been trying for a long time to avoid it.
Unlike many others she wasn’t intimidated by me for a second. She would stand by my bed and hold up the manual about spinal cord injuries. It was the last thing I wanted to read: a book about my fearful present, my dismal future. But she made me read about bowels and sexuality and dysreflexia.
Dysreflexia is a condition that results from a clogged bowel or urinary tract or even something as simple as an ingrown toenail or a kink in the catheter. It often happens quite suddenly, causing high blood pressure, and in some cases a heart attack or a stroke. It is particularly dangerous because a patient may not become aware of it until it is too late. The worst situation is to have it happen in a place where people know nothing about it. One day some of the rehab staff at Kessler took me to Newark Airport to learn how to board an airplane. We were sitting in the American Airlines Admirals Club, waiting to get on a plane that was between flights. I asked where the plane was going and learned that the destination was Dallas. I said, “No, never mind. If it was going someplace exciting . . .” We were all laughing.
I was relaxing and drinking a ginger ale when suddenly I felt my heart pounding in my chest. It was really strange; my heart was just booming. I asked Sylvia, “Could you take my pulse, my blood pressure?” My blood pressure was 140 over 100. Usually it’s about 110 over 70. And my heart rate, usually about 68, was up to 135. Then I started to have an excruciating headache—like an ice cream headache but times five, and we knew I was experiencing my first bout of dysreflexia. We went into a little cubicle at the back of the club.
What frightened me most was that we were in a public place. We were stuck in Newark Airport without a catheter irrigation kit or any nitro paste to keep my blood pressure down. There was a kink in the catheter, and my bladder wasn’t draining. If my blood pressure went too high, I would have a heart attack or a stroke.
But this time I actually remained fairly calm. Sylvia decided to call the airport EMTs. Although it was Saturday, not a busy day, it took them a half hour to arrive. My blood pressure climbed to 170 over 120, then 190 over 130, and finally 210 over 150. I could only sit there with my heart pounding, thinking, I’m really stuck. At last the EMTs showed up, Sylvia did a bladder irrigation with saline, and the flow was restored. In the space of five minutes, 1,100 cc’s of urine came out. The average person starts looking for a bathroom at about 350. By 400 or 500 he is desperate: if he’s on a bus, he’s begging the driver to let him off.
The trouble is that if you are paralyzed you don’t know when clogging is taking place. And many hospitals don’t even recognize it when it happens. If you went to the emergency room of the average hospital with dysreflexia, they wouldn’t know what you were talking about. That’s
why it is so important to know the details of your own care; you’ve got to know what is needed. That’s why Patty made me read that manual.
This was hard for me, because there are many things about the body and its functions and problems that I had simply never been interested in. Until Memorial Day 1995, my body had never let me down. I thought I was pretty indestructible.
But now I had to be aware of my body all the time. I was forced to become a serious student of myself. Many times at Kessler when I would want to read or watch Monday night football, Patty would come in with that damn handbook and force me to confront its contents. At first I would read a few pages or a single chapter and say, “I can’t. I want to talk on the phone. I want to watch TV.” But she would make me come back to it, make me study it in detail.
Gradually I realized I had to learn to think of myself the way I used to think about a new hobby or a new sport. I had to be as disciplined about my body as I had been about learning to fly a plane, or sail a boat, or ride a horse. I had to understand exactly where I was now, and how I would be for the foreseeable future. How could I master my situation? Who would I become?
My days at Kessler began at about seven-thirty, when the morning nurse came in. She would turn off the G-tube, which had been pouring liquid nutrition directly into my stomach all night. Charles, the aide on our bobsled team, would come in to help. They would turn on the radio, then range my legs and arms in the bed, pulling and massaging them to maintain flexibility and good circulation. Charles and Meredith would dress me, and there was the ordeal of the old-lady T.E.D.s, the Ace bandages, the abdominal binder. These were all necessary to keep my blood pressure from dropping sharply when I was moved into the chair. Then sweatpants and, because it was summer, a T-shirt.
Still Me Page 11
