I’m fairly sure I was given a private room because I was a celebrity. The staff went way over the top in their efforts to protect me. It was almost funny. I was assigned security guards who dressed like Secret Service agents; they sat outside my room and made detailed entries in a logbook of everyone who came and went. They followed me everywhere, although they never lifted a finger to help.
Once I was in my room when my breathing tube popped off. I couldn’t take a breath. It was nearly midnight, the alarm on my vent was screaming, and I was making clicking noises—clk-clk-clk-clk-clk—always a signal for “I need air.” The security guard came in and asked, “Are you all right, Mr. Reeve?” He could have turned on the light and tried to find the source of the disconnect, but rather than get involved he went down the hall to look for a nurse. By then I was starting to pass out.
Being suddenly cut off from my life support this way was even more terrifying at Kessler than it had been at UVA. As the air left my body, I would feel a tingling first in my knees and then in my chest. And then, terrified that no one would come, I would lose even more air by thrashing around as panic took hold of me. In Virginia the nurses were nearby, and it was never more than about ten seconds before one of them would come in and reconnect the tubing. But when you go to rehab, you lose the safety net of the ICU as you become part of a general population of patients. It was a difficult adjustment to become one among many after a month of being the only vent-dependent patient at UVA.
I was given many special privileges in rehab, although this soon led to a kind of glorified isolation. This treatment was encouraged by Dr. Sipski, who had me as her only patient. It was all well-intentioned, but I was cut off from the other patients, which was not a good thing. Also, many of the nurses may have been more intimidated than I realized. I don’t think of myself as intimidating or frightening, but to the staff at Kessler, I was unique. I came from the world of the quoted and the photographed.
The nurses’ station was about sixty feet from my room, and they had many patients to attend to. Kessler is a busy place at all hours of the day and night. Spinal cord patients are situated in the west wing, and when I was there five or six of us were on ventilators. Until about 1992 they had never had vent patients, and their spinal cord handbook says nothing about injuries above C4. When I read through it I felt a little freakish, because there was nothing in it that specifically addressed my condition. I felt I was in unexplored territory. Even after I had been at Kessler for weeks, I still panicked about the pop-offs: What if nobody at the station was paying attention? The security guard outside my door either couldn’t or wouldn’t help me. I joked that I always checked the footwear of the nurses on duty to make sure they were wearing sneakers. I wanted them to be able to race down the hall without slipping.
Of course, the joke was halfhearted, a device. When I couldn’t breathe I felt like a fish that finds itself on the deck of a boat, flopping around with the hook still in its mouth. My imagination flailed too: I can’t breathe, I don’t know if anybody’s coming, it’s the middle of the night. If they do come, will they turn the light on? Will they be able to find the disconnect? The break could be at my throat, could be down near the floor, could be at the vent. I’ll lose more time as they try to find it. I can’t breathe, there’s no more air, I can’t make it, can’t do this. I’m chained, hooked, tied to this damn thing. And I’m totally dependent on other people.
This panic was a reflection of my general state of mind. In fact, the nurses are always alert to pop-offs with vent patients. When one occurs they come charging down the halls. I will always remember Janet, one of the senior nurses and definitely the one you’d want in a crisis, if you’re having what’s called a code. Janet is very skilled in emergency procedures, but she’s a rather large woman. I remember her running down the hall and into my room. As she burst in to come to my rescue, her shoulders and arms would often bump against the walls, and most of the pictures, papers, and notes on the bulletin board would bite the dust. The next morning someone would have to help me put the room back together again. But Janet always went right to the source of the problem.
One night a different nurse came in, and she had trouble finding the light switch. Then she couldn’t locate the disconnect. I knew where it was, but I couldn’t speak. I tried to point with my head. She grabbed the ambu bag on the wall and squeezed breath into me by hand while she called for help. Two more nurses arrived, found where the pop-off was, and put me back on the vent. These episodes intensified my feelings of utter helplessness.
The physical therapy staff transferring me onto an exercise mat in the rehab gym.
Over the months I grew accustomed to the pop-offs, and they became fairly routine. I began to think of them as a metaphor for the entire experience of rehab: you start to realize that you are becoming physically and emotionally stronger and can get through more situations than you had thought you could. It gets easier to make it through the night. You become more comfortable with your surroundings. You develop friendships with the nurses.
I have great memories of the staff at Kessler and feel a deep fondness for many of them. The nurses and aides are really psychologists as well. They’re the ones who can help you face reality. You may see a professional psychologist once or twice a week, but you rely much more on the staff you work with every day.
There was Patty, who became like a younger sister. There was Meredith, also in her twenties; I called her Ruthie because one of her elderly patients always confused her with her only daughter. She was the morning nurse and often helped me make the transition back to reality after a night of vivid dreams—she would tell me all about her progress in getting her boyfriend, Joe, to put a ring on her finger. Then there was Janet; and Sylvia, who was a sweet and soothing presence on the mornings when Meredith was off; and a wonderful Jamaican aide called Juice, whose real name is Glenn Miller. When I gave a speech at the Pierre Hotel my first time out of Kessler, Juice wheeled me onto the stage, and I introduced him to the audience: “This is my good friend Glenn Miller. He used to be a bandleader, but he gave it up to be a physical therapist.”
We called him Juice because he made fabulous concoctions in a blender. I don’t know what he put in there, but those drinks were delicious. It was just an extra bit of thoughtfulness. He’s a big man, about six feet tall, with strong arms and huge hands. He wears steel-rimmed glasses that he is always losing, and he has the biggest smile I’ve ever seen. He was always talking a mile a minute and would enter the room as though shot from a cannon. We became very close. He has been in this country about nineteen years, but he sounds as if he just arrived from the island yesterday. I would ask him, “What happened? Why is your accent still so strong?” He always answered, “Cause I don’t want to lose my roots.”
Juice is very religious, and he believes that I survived for a reason and was in Kessler for a purpose. Every day he came in with such great energy and optimism, and so much giving. He; Patty; Meredith; my physical therapist, Erica Druin; and my new physiatrist, Dr. Steven Kirshblum—the director of the Spinal Cord Unit, who replaced Dr. Sipski as my principal doctor—were the guides who helped me begin to accept my new life.
When Dr. Kirshblum took over the responsibility for my care, it was a tremendous psychological boost. I had not hit it off with Dr. Sipski and often had a sinking feeling when she came into my room. Dr. Kirshblum and I had an instant rapport. He is funny, irreverent, and deeply committed to his patients.
When I was in Northern Westchester Hospital for treatment of a blood clot in February 1996, long after my discharge from Kessler, he suddenly appeared in my room, saying he was in the neighborhood anyway and decided to drop in. I’m certain he had no reason to be “in the neighborhood”; he had obviously cleared his schedule at Kessler and driven more than two hours from New Jersey to confer with the local doctors about my condition.
Many times at Kessler we would be in the middle of a conversation on a Friday and I would have to remind him what t
ime it was, because he is an Orthodox Jew and has to be home by sundown. His house was seven minutes away if he sprinted, and he always left with only seconds to spare.
As we got to know each other, I felt comfortable enough to tease him about his posture; although he is only in his midthirties, he has the slouching shoulders of a much older man. I told him that on behalf of those of us who can’t walk, he had to stand up straight. Whenever we passed each other in the hallway, he would remember to hold himself upright, or I would play drill sergeant and order him to comply with the regulations. Of all the doctors who have come into my life—many more than I would ever have imagined—Steve Kirshblum sets the standard for his skill, compassion, and generosity.
Little by little, as I became more comfortable at Kessler, I began to emerge from my isolation. I started to visit the other patients, and soon they came to visit me. At first I felt that this was an imposition; I didn’t necessarily want to see them. Gradually I discovered that it was fulfilling to share experiences and feelings, and I started to leave my door open. I never knew who would wheel in or what kind of a conversation we’d have. I found myself talking in depth with people I wouldn’t ordinarily have met. Each person had something to offer. Before the accident I think that I tended to pigeon-hole: This is the guy behind the counter at the gas station, I pay him with my credit card and maybe he says, “Have a nice day,” and I say, “Thanks.” Or this is someone in a deli who makes me a sandwich, but I don’t really care about him. I don’t think of him as a person with individual characteristics and a history of his own. It’s so easy not to really see people.
In Kessler I met people from every walk of life, of many nationalities and ages: a fourteen-year-old boy who’d been flipped on his head by his brother when they were wrestling; a sixty-year-old stagehand at Radio City who had stepped backwards off some scaffolding and fallen thirty feet to the stage below; a guy my age who’d been dumped into the sand by a wave when he was bodysurfing; people who were gradually losing their body functions to multiple sclerosis or who had suffered strokes. And I found myself connecting with many of them in ways that I would never have thought possible. I had been separated from the other patients by a wall of security that somebody thought I needed because of my celebrity status, until one day I said, “This is ridiculous. I don’t need these guards.” I started interacting with the other patients. I was becoming less resistant to being one of them.
Acceptance of your condition is an essential first step in rehab. Ordinary functions are now completely different. For example, every couple of nights you need to take a shower. The prospect absolutely terrified me: What if something happened to the vent in the shower? What if water got into the trach or the tube from the ventilator to the opening in my throat? They put a special stretcher under the bed, rolled the bed away, and placed me in a kind of net. Once again, I felt: I can’t do this. There is no way. The idea of immersing myself in water petrified me. I kept putting it off, saying, “Just give me a sponge bath. I can’t face a shower.”
Janet and Juice were very patient. They didn’t ridicule me or make me feel stupid. Juice kept saying, “You’re gonna feel so good, man. You’re gonna want a shower every night.” But I couldn’t believe it. I was afraid of the transfer, afraid of being rolled down the hall, afraid of the water. It seems utterly ridiculous now, but it didn’t then, not to me.
Finally one night after stalling for a week or two, I agreed to try it. Dana was with me, and she literally had to walk into the shower with me and stay there, just so I could see her and talk to her. I’m not sure what my deepest fear actually was, but my condition made me feel open to every imaginable terror. Each step was a huge and horrific adventure.
Juice got me through it. Without him I wouldn’t have been able to face any of these ordeals. He was able to “stand-pivot” me out of a chair by himself, squatting like a weight lifter about to do an overhead press, then lifting me up. When he would grip me, as I leaned forward on his shoulder and he prepared to transfer me out of the chair, I always knew that everything was okay. I felt the way a child must feel when a father picks him up and carries him off to bed—both safe and small.
My first time in the shower, as I lay on the stretcher still very frightened, Juice told me a story: “You think you got it bad? One time we had a lady here who had a spinal cord injury, and the way she got it was, she was on the porch of her house and her dog, who was old, went into cardiac arrest. So she started to give mouth-to-mouth to the dog. She closed the dog’s mouth and was breathing into his nose. She was so worried about the dog, and she was struggling so hard with the dog to help the dog that she forgot where she was. She fell off the porch and broke her neck. Then the dog died anyway.”
I laughed so hard that tears were streaming down my face. All sense of propriety and any compassion for this poor woman went out the window. The worst part was that the story was true, yet I could only find it so ridiculous that I nearly went into convulsions from laughter. Probably my reaction was fueled by my state of anxiety as I lay in the shower on a net, scared of coughing or breathing. The lady and her dog became a running joke between us. I felt guilty for laughing at it over and over again, but somehow I think it helped me accept the idea that life is more unpredictable—and even more absurd—than any of us can imagine.
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.
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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.
Still Me Page 10