Nothing Is Impossible (2 page)

Apparently no one in my little nighttime universe knew that a handful of scientists around the world had been investigating the possibility of regeneration in the spinal cord as early as the 1970s. In 1981 Dr. Alberto Aguayo, at McGill University in Montreal, using a cocktail of growth-enhancing chemicals, achieved regeneration and modest functional recovery in rats.

I only began to focus on spinal cord research in early September 1995. Until then my primary concern was survival, not only for me as a patient but for Dana and my three children, Matthew (fifteen), Alexandra (eleven), and Will (three). Their love and the love that flowed from my extended family, as well as from friends and even complete strangers all over the world, had saved me from my initial desire to end it all. In 2002, seven years after the accident and in the year of my fiftieth birthday, I look back with almost indescribable gratitude at the moment when Dana knelt by my bedside and said, “You’re still you, and I love you.”

Her simple but profound declaration became the basis for my autobiography,
Still Me
, which was published in 1998. But in describing that scene I never mentioned one critical detail: in response to my thoughts about ending my life, she said that we should wait for
at least two years. Then, if I still felt the same, we could find a way to let me go. On one level, you could say she used the oldest selling technique in the book: you offer customers a free trial, a free sample, with no obligation and no money down, in order to get them on the hook. On another level, a much deeper one where our love and respect for each other has always lived, she knew that I was only in the first stage of a natural reaction to tragedy. Asking me to wait was the perfect course of action. She was giving me room, the freedom to make a choice, yet knowing what that choice would be in time.

The first decision flowed from Dana’s words and the look on the faces of all three children when they came into my room. While Dana supported the option to reconsider the value of life at a point in the future, I could tell in an instant that the children wanted me to live and be there for them
now
. I consented to the surgery. I gave the doctors permission to suction secretions out of my lungs and use IV antibiotics to treat the pneumonia that otherwise would have caused my death. Although I didn’t realize it at the time, I had chosen the path toward survival. Inner turmoil and the highs and lows caused by contradictory information would become the norm, but there would be no turning back.

First I had to learn to swallow. Even though I passed
the test, the smell and taste of food were repulsive. A feeding tube was inserted into my stomach, and during the night a bagful of mocha-colored goop containing essential nutrients dripped down a long catheter into the site. Once a day a team of nurses and physical therapists transferred me into a wheelchair and pushed me down a corridor into the dayroom, where I could receive visitors and have someone in my family read letters to me for no more than thirty minutes. Then it was back to bed.

I couldn’t believe how complicated this daily excursion was. First my head and neck had to be immobilized in a rigid cervical collar. Then Ace bandages were wrapped around most of my torso in order to keep my blood pressure from dropping when I sat up. Next a rigid sheet of plastic called a sliding board was positioned under my body; two nurses rolled me onto my side while two others slid the board into place. Before the transfer into the wheelchair I was gradually pushed up into a sitting position on the bed. My blood pressure was monitored every ninety seconds. Sometimes I would faint, which meant a ten- to fifteen-minute wait before another attempt. On a bad day it might take two or three tries. On a good day I could achieve sitting up with a stabilized blood pressure in about twenty minutes. When I could sit up without “crashing” we were
ready for the big maneuver. The wheelchair was placed against the left side of the bed and its right arm removed. The bed was lowered to the level of the wheelchair. I lay flat again and my team of helpers carefully dragged the sliding board over to form a bridge between the wheelchair and the bed. The next step was sitting up again. If that was successful, I was gently placed in the chair and the board was taken away. After a few minutes of adjusting to being in the wheelchair, I was pushed down the corridor and into the dayroom.

As I started to face reality during the month in intensive care and six months in rehab, moments from my former life kept popping into my head. It was like a slide show, but the pictures were all out of sequence, as if they had been placed randomly in the projector. As a long plastic tube was inserted through my neck and pushed down into my lungs to remove accumulating fluid, suddenly I would be sailing in Maine. But before the next slide appeared on the screen in my mind, secretions were being suctioned up the tube. A moment or two later, Dana and I were making love; I was on a horse jumping over stone walls in the countryside; I was taking a curtain call after a performance in the theater, carrying boxes and lugging furniture up four flights of stairs into my first apartment in New York. Then it was four in the morning, and two aides had
woken me up by turning me over onto my other side so that my skin wouldn’t break down from lying in one position too long. Even though I was flipped from side to side every two hours at night for nearly three years after my injury, I almost never slept through it. More images flashed on the screen, usually snapshots of my most cherished memories when I was whole and healthy and free.

Psychologists came to the bedside, but their tone was often patronizing and I was usually relieved when they went away. I had to read the
Spinal Cord Manual
, which had little to say about patients with my level of injury. I had to choose a color for my new Sip-N-Puff wheelchair, which would allow me to drive by myself without being pushed. I had to locate a specially equipped accessible van with four-wheel drive, heavy-duty shock absorbers, and a mechanical lift. I had to approve plans for remodeling our house so that I could work, eat, and sleep all on one floor. There were dozens of other issues that had to be faced. Reality was now my new identity as a C-2 vent-dependent quadriplegic. My vision for the future prior to three o’clock on May 27, 1995, I now classified as what would have been a normal life. Everything after that instant I now had to accept as the new reality. Deep inside I was angry, and I probably still carry much of that anger with me today.
But the critical factor was that in spite of myself, I was adjusting to my new life.

Dana’s intuition about what my state of mind would be two years after the accident proved to be absolutely right: I was glad to be alive, not out of obligation to others, but because life was worth living. By May 27, 1997, we were settled in our bedroom in the new wing of our home north of New York City, having camped out in the dining room for more than six months.
In the Gloaming
, a film I directed for HBO, had premiered in late April and been warmly received by the critics and the public. I had become the spokesman for HealthExtras, a company based in Maryland that offers low-cost supplemental insurance to cover nonmedical expenses in the event of a catastrophic illness or disability. The American Paralysis Association, founded by Henry Stifel, Sr., in 1982 after his son Henry suffered a spinal cord injury at age seventeen, had now become the Christopher Reeve Paralysis Foundation. Although it was still run by a small staff in a Springfield, New Jersey, office building, the annual research budget had grown from $300,000 to more than $3 million. I was healthy enough to accept speaking engagements around the country, even though the travel required private planes, three nurses, two aides, and a coordinator of logistics and accessibility.

Today I am probably busier than I was before the accident. I have to juggle physical therapy, my responsibilities at the foundation and as vice-chairman of the National Organization on Disability, writing, producing, directing, family, friends, travel, and much more. When people ask if I am disturbed by the fact that others pity me, I have to admit that the problem actually is that everyone seems to assume I can do almost anything.

On a Thursday in late April 2002, Dana and I received an invitation from the king of Spain to fly to Barcelona for the weekend. The offer was to attend a Formula One race with the royal family that Saturday afternoon, followed by a small private dinner and an appearance at a party around midnight. On Sunday we were to have lunch at a nearby seaside resort before returning to New York that evening on the king’s private jet. Needless to say we would have been there in a heartbeat, except for a few details. When our logistics coordinator, Diana De Rosa, contacted all the king’s men (or at least those involved in planning the weekend), she gave them the dimensions of my wheelchair and soon discovered that there was room for me at the racetrack, but not at the party. Apparently our attendance at that occasion was very important to the king, but no entrance to the venue was at least thirty-one inches wide. Diana never got around to listing some of
the other requirements for the trip: a hospital bed with an inflatable mattress, supplemental oxygen, voltage converters for the ventilator and the battery charger for the wheelchair, accommodations for an entourage of at least seven or eight people, and contingency plans with a first-rate hospital in case of an emergency.

Whenever I travel, all those issues have to be taken into consideration, but nine times out of ten I go. In 1995, a trip down the corridor to a hospital dayroom was an arduous journey. In 2002, a weekend trip to Spain was only a question of relatively minor logistics. Unfortunately the invitation was politely withdrawn.

ON MAY 3, 2002, DANA AND I HOSTED THE RIBBON-CUTTING
ceremony for the CRPF’s new Paralysis Resource Center near our main office in Springfield. Funded by the government through the Centers for Disease Control in Atlanta, it is
the
source of information for anyone newly paralyzed or living with paralysis for any reason. Simply by going to
www.paralysis.org
on the Internet, patients and their caregivers can access our website and find referrals to accessibility, assisted living, transportation, job opportunities, recreation, and much more. Sometimes it seems that Dana and I were looking for answers to many of those questions just the other day.
Suddenly seven years have gone by and we’re in a position to give advice. What I say to others depends on their condition. I tell people who have been injured recently and are still contemplating suicide that life is worth living. Many respond well to the fact that there are no absolutes. I try to lift their spirits by making light of some research. Scientists reverse their findings all the time: first they say coffee is okay, and then they say it’s not. They go back and forth about the benefits of red wine, butter versus margarine, how long a mother should breast-feed, and how many times a week (if any) you should eat eggs. What about all the people who are up and around long after a doctor told them they had only six months to live or would never walk again? Some people live with paralysis but don’t take care of their health. I suggest that they eat properly and try to find a way to exercise. It might help with recovery; at the very least it will mean fewer visits to the hospital.

Occasionally I hear from people with spinal cord injuries who have been sitting in a wheelchair for as much as twenty-one years. Some tell me that there is no point in searching for a cure; others even say they are happy with life the way it is and don’t want to be cured. It’s difficult for me to understand their point of view, but I completely respect those individuals as long as they don’t try to interfere with progress. Less than a
generation ago it would have been almost irrelevant to ask a patient with Parkinson’s, Alzheimer’s, diabetes, muscular dystrophy, ALS, or a spinal cord injury not to stand in the way of progress, simply because there wasn’t much. Today all that has changed. Since the time of my injury, scientists all over the world have been steadily moving forward, although they are not progressing as rapidly as many patients would like. At least they have been saying publicly, and most of us believe privately, that it is no longer appropriate or necessary to use the word “impossible.”