Still Me (17 page)

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.

Putting on the T-shirt required special care. Anytime I was moved I had to wear a collar that went up under my chin and down to the bottom of my neck, so I couldn't turn one way or the other. The collar immobilized my neck and stabilized the bones that had been grafted from my hip and were still healing. I had to keep it on for the first eight weeks at Kessler, except when I was lying still at night.

When I was dressed and ready, I was put into the chair. By ten o'clock I was down at physical therapy being transferred onto a padded table, and my arms and legs would be ranged again.

The physical therapy gym at Kessler is huge, at least a hundred feet long, with high ceilings and fluorescent lights, filled with people dealing with their disabilities. It is a room of sweat and struggle and disappointment, where people are fighting for their lives. It has a musty, stale smell, especially in the summer.

Everybody went to the same individual spot day after day. There were people with every imaginable disability—amputees, people trying to walk, people trying to learn to roll over, people trying to sit up for the first time. There were about fifteen physical therapists. I found it hard to go into that room.

Therapists shouted out instructions and encouragement; patients were urged to do another, try harder, not give up. “C'mon, you can do it. Another five.” Sometimes you'd hear cheering and clapping when somebody made a little progress or had a breakthrough.

When I was on the mat, I'd have to be rolled on my side because of the decubitus wound. At first I could only make small movements with my head. Erica, my therapist, would very gently put pressure on one side of my head, and I would push against it, moving about an inch. That was it.

I tried to move my shoulders a little. I could coax some motion from the trapezius muscles in my right shoulder, but really nothing else. Even trying to move my trapezius muscle was a test of endurance. You could see a flicker of movement, a little bulge of the muscle right along the top of my shoulder. But this small movement was reason for hope, because it took place below the level of my injury. It was something to build on, although I couldn't see that at the time. I did it simply because I was told to. But it was important to persevere, because if you can get a muscle to start moving, sometimes you can get others next to it moving, too.

I was also taken to a room in the outpatient department where I sat in my wheelchair in front of a biofeedback machine. Electrodes were placed on my shoulders, and a graph would record my responses on a screen as I moved my trapezius muscles. I could actually
see
the movement this way. This allowed the therapists to take advantage of my competitive personality, to increase my motivation. They would set a target level and throw numbers at me, shouting, “You've got to beat that number.” It was a simple exercise, but it got me going. Each day I tried to beat the previous day's numbers.

At first it was a wholly new experience for me to try to move one muscle at a time. It took a while for my brain to make a connection with the muscle I wanted to move. I'd have to think: My brain to my right shoulder. Okay, I just want that trapezius muscle at the top of my right shoulder to move. All right, let's go. One, two, three,
go.
I would will it to move. Gradually, the numbers began to improve.

I couldn't give up, because additional recovery can occur after six months, a year, even eighteen months, two years. That motivated me to keep exercising. Nerves can find new pathways, new ways to stimulate the muscles. I heard about a man who was suddenly able to move his leg three years after his injury. By March 1996 I could move my scapula muscles just behind the shoulder blades, which was a significant improvement.

After about an hour with Erica I would be taken to Occupational Therapy, where they taught me about different kinds of wheelchairs and special computers. They would talk about what kind of chair I would have when I went home, or what kind of voice-operated computer—none of which I wanted to hear.