PURPLE PATCH: The first decision —Christopher Reeve

“As the old saying goes, you better know what you want because you might get it and you have got to accept it. Whether you succeed or whether you encounter adversity you always have to believe in your worth as a person. That is what counts” — Remarks at a success seminar in Portland, Oregon, February 6, 2001.

When I made those comments in 2001, it was no longer difficult for me to say to anyone that you have to believe in your worth as a person. But in the intensive care unit at the University of Virginia on June 1, 1995, I had no such belief. Far from it. On that day I regained consciousness to find myself lying in traction, a heavy metal ball suspended behind my head attached to a metal frame secured by screws in each temple. I learned that as the result of a fall during an equestrian competition I had broken my neck just centimetres below the brain stem, and that my chances of surviving the surgery to reattach my head to my spinal column were 50/50 at best. Even if the operation was successful, I would still remain paralysed from the shoulders down and unable to breathe on my own. I heard the whooshing sound of a ventilator as it pumped oxygen into my lungs through a long tube inserted into a hole in my neck. I have lived with that sound for many years.

The moment I understood the gravity of my situation, my immediate reaction was that such a life was unacceptable, even though I knew absolutely nothing about living as a vent-dependent quadriplegic. I realised that there was no cure for spinal cord injuries like mine and that I would forever be dependent on others for the basic necessities of daily existence. My role as a husband and the father of three children would be severely compromised, because paralysis had suddenly transformed me into a 42-year-old infant. I thought it would be selfish and unfair to remain alive.

I remember going over my life, taking an inventory of all the cuts, bruises, broken bones, and illnesses I had weathered, ranging from mononucleosis to malaria and mastocytosis (a rare disease that destroys red blood cells as they emerge from the bone marrow). At age 16, I developed alopecia areata, a condition that causes patches of baldness in an otherwise healthy head of hair. Fortunately I was able to comb over the spots, and there were long periods of remission when the baldness disappeared. I was a survivor; I always had been. A part of me insisted that this situation should not be any different; another part acknowledged that this time I had gone over the edge and was free-falling into the unknown.

The month I spent in the intensive care unit was an emotional roller-coaster ride created by my own inner turmoil and contradictions coming from those involved in my case. The critical care was nothing short of miraculous. Dr John Jane — arguably one of the best neurosurgeons in the world — achieved the nearly impossible feat of reattaching the base of my skull to my spinal column with wire, titanium, and bone grafted from my hip. Under his watchful eye, a team of internists and pulmonologists cured me of ulcers and pneumonia. By the second week I was able to turn my head about half an inch from side to side, and I could raise my shoulders slightly. Dr Jane was confident that before too long I would be able to move my deltoids, which might lead to the functional recovery of my right arm. Perhaps I could learn to feed myself, and someday be able to drive a specially adapted car. My spirits rose.

In the third week of June I was visited by Dr Marcalee Sipski, director of the Spinal Cord Injury Unit at the Kessler Rehabilitation Institute in West Orange, New Jersey. My wife, Dana, and my younger brother, Benjamin, had surveyed rehab centres from Georgia to Colorado and concluded that Kessler was the best choice, because I would receive the highest quality care without having to go far from home. Dr Sipski gave me a thorough examination and then told me point blank that my injury was “complete” — meaning that the cord had been severed at the second cervical vertebra (known as “C-2”). Signals from the brain would never be able to get past the injury site. Without any direction from above, the spinal cord would remain useless and the skin, muscles, bones, and tissues of my body would begin a steady progression of atrophy and decay. All I knew about the regeneration of cut or damaged nerves was that it was possible in the peripheral nervous system but not in the central nervous system.

I asked questions about the spinal cord and why the nerves inside it could not regenerate. Usually I had these conversations late at night with the residents and nurses on duty in the unit. Nobody claimed to know for certain, but the prevailing explanation was that it had to do with evolution. An animal paralysed by a spinal cord injury would most likely be a ready-to-serve meal for another animal higher on the food chain. Even if nerve regeneration in the spinal cord was possible it could not happen quickly, so the injured animal would still be easy prey. Without medical intervention the victim of a spinal cord injury — animal or human — usually dies within hours or days, depending on the severity of the case. Almost every one of these late-night discussions ended with the conclusion that I should just consider myself lucky to be alive. I was not so sure.

(This extract has been taken from Nothing is Impossible by Christopher Reeve)

Christopher Reeve was an American actor, film director, producer and screenwriter. He became quadriplegic after being thrown from his horse and required a wheelchair and breathing apparatus for the remainder of his life