Christopher Reeve's "Courageous Steps"

By Jo Addie

The news came like a shock wave, electrifying the media, the scientific community, the medical profession and all who heard the news.  Christopher Reeve has recovered some movement in his body, which has remained still for seven long years.  He is the first person to have suffered the worst possible spinal cord injury (C-2 Quadriplegic) and have no recovery in the first two years, to have improvement years later. This unprecedented development is rocking the field of neuroscience and igniting sparks of hope for all who suffer from paralysis. 

But for those who know him, like his wife Dana, Chris' ability to defy the doctors' prognosis is no real surprise.  It's just the nature of the man to reach for the 'adventure' ahead, to forge new paths, undaunted by negative forces.
 
From the time we worked on Somewhere In Time, his remarkable ‘positivity’ --a word I like to use in describing Chris for people who ask me what he's like--his enthusiasm, his fresh optimism, his zesty attitude toward whatever it is he is involved in--was always apparent.  He literally exuded positive energy.  It is an absolute that if you meet this man, you will love this man.  How can you help it?  He doesn't spend his energy on negative thoughts, he doesn't waist time complaining...he moves forward and activates change.  A few times in his presence, I found myself doing double-takes, wondering, “are you for real?”  Perhaps that is the mysterious, nebulous quality of "magnetism" that some have written about....if so, there is no doubt Chris has it, in spades. 

I remember an early interview I read, though I don't remember where, in which he was saying that he had found he could be happy both rich and poor, be content eating cereal on crates as furniture, feel as good as when he was enjoying a big paycheck and living in a Hollywood home...that sort of flexibility and resilience was impressive too.  Chris chose acting roles--including that of Richard Collier--not for money, having been offered much higher-paying parts, but for the challenge they afforded him.  Even at the peak of his movie career, he always went back to the theatre, to further hone his skills.

When he was injured, I fell into a serious depression, thinking how tragic a blow he suffered.  Yet, I knew in my heart, he would somehow forge a new, albeit different life and make it a good one.  He would need to draw on all those marvelous qualities he possessed, and when those weren't enough, he drew strength from his wife Dana, a person of equal depth, genuineness and sparkle.  My own depression over Chris' devastating injury began to lift when I saw him interviewed by Barbara Walters, late in 1995, when it was apparent his attitude, coping skills, and his resilience were serving him well, even through the disappointing setbacks.  How delightful it is to see Chris and Dana together, obvious deeply in love, with that reverential respect that mates should have for each other...the kind of bond that only comes through adversity.

It seems as though Chris is more “famous'” now in his current condition than he was as an active man in the peak of health, taking on a variety of roles as a Hollywood star.  Nevertheless, Chris was always pushing the envelope somewhere.  In 1997 (1st Q INSITE issue) I wrote an article about him called, “The Hero You Didn't Expect”, in which were revealed his political activism, and charitable work.  Chris was engaging in altruistic endeavors long before those aspects of his character were made widely public.

Whether skiing, sailing, flying or anything else, Chris throws himself wholeheartedly into his activities.  This goes a long way in explaining his seemingly inexhaustible energy, and determination.  He is the type who competes only with himself, and will work to go beyond whatever anyone could expect from him.

Chris helped found the Creative Coalition, a forum in which actors “in the spotlight” could become informed, to utilize their celebrity to forward worthwhile causes.   He was involved in many local and far-reaching issues--from pure water for New York City, to freedom of speech in the arts.  He was involved in Special Olympics long before he himself became wheelchair bound. 

And he even was willing to put his own life on the line on behalf of others in trouble.  In the mid-eighties, Chris learned of a critical situation in Chile, during the militarist regime of dictator Pinochet.  A group of seventy actors and directors, who were considered dissidents, were given an ultimatum to leave the country within days or be executed. Chris didn't wait for others to join him.  He traveled to Chile single-handedly, carrying letters of support from fellow actors in the various Unions in the States, and  a petition from Amnesty International, to publicly denounce the ultimatum, hoping his celebrity would turn the tide of intense pressure.  He couldn't speak their language, but that didn't dissuade him.  Amidst machine gun-toting soldiers, riots, and beatings, he made his statement in support of the actors.  It worked. The death warrants against them were lifted. 

It is not widely known, but Chris once flew solo across the Atlantic--becoming lost temporarily, dangerously low on fuel, but he accomplished that feat, one few pilots would attempt. This demonstrates that he’s always set high-level goals.  Being goal oriented, with each goal met, his inner strength and knowledge of his capabilities empower him to stretch ever forward.

And now, even though he's paralyzed, he has still directed his first movie (In the Gloaming), starred in a wonderful remake (Rear Window), written two books, given countless inspirational speeches, and lobbied Congress on increasing insurance caps for catastrophic illness and the issue of stem cell research.  

He spearheaded the networking of once-isolated scientists in related research through his Christopher Reeve Paralysis Foundation, so they could instantly share their findings.  This jump-started progress in the field of spinal cord research,  moving it from a snail's pace--because it was considered hopeless--to a blossoming and promising field of endeavor, paving the way for a real cure.  Now there is light at the end of the tunnel.  And this future cure, when it will be found, will not only help those who are paralyzed, it will also improve life for those with diabetes, multiple sclerosis, stroke, Alzheimer’s, Parkinson's and other diseases of the nervous system. 

This year, he and his wife cut the ribbon on another pet project, The Christopher and Dana Reeve Paralysis Resource Center, a facility devoted to improving the daily life of those stricken with paralyzing conditions.  This center, in New Jersey, helps families learn about all the technology, equipment and devices available to help them live better lives.  No facility like it existed previously. 

The "Miraculous" Developments

Chris has suffered all the ravages his stillness inevitably brought with it.  He's had pneumonia, infections, skin breakdown, bowel and bladder problems, blood clots and broken bones.  He was back in the hospital 13 times in the first two years after his accident. Through it all, he was determined to maintain his body through exercise, so that if someday a cure would be found, he would be in good enough condition to receive it.  This goal, despite setbacks, devoted him to an intense exercise program 3 days a week, in which his body was strapped to several devices which would move his limbs for him.

For five entire years, not a single bit of improvement was seen--with the notable exceptions of improved circulation, return of muscle mass and reversing the effects of osteoporosis, staving off frequent hospital stays.  Even though no movement was even thought possible, Chris continued.  His incredible focus on his long term goal, to at least be in good enough condition to receive a cure if ever one was found, kept him going against the most daunting odds.  It is this ability he has to focus on a goal with unswerving concentration that is a marvel of Christopher Reeve's character.  Most of the population cannot even stay with a simple goal of losing a few pounds, let alone the years of time he may have to wait until he can try a cure that hasn't yet been developed.

His ventilator does the job of breathing for him, but Chris has not been content to be reliant on it.  This is partly because of the fear of “pop-offs” which occasionally occur, when the hose comes loose from his body, triggering an alarm for someone to come running.  This was graphically illustrated in Rear Window, and is a danger for all vent dependent patients.  For us who breathe normally, it is virtually effortless to take in air, because our diaphragm, the muscle below and in between our lungs, moves downward to cause a gentle vacuum action, helping us to draw air to fill and inflate our lungs, then pushes upward to release the exhalation.  Chris has to force air into his lungs, and likens the effort involved to blowing up a balloon.  Chris has taught himself to be able to breathe for over an hour, previously “by gulping air, like a fish out of water.”  He cannot speak while he is breathing on his own, and after an hour to an hour and a half, he would be completely exhausted from the effort, which he has described as “climbing Mt. Everest with a pack on your back.”  Now, he has gained some control of his diaphragm, and can sit calmly and breathe for the same amount of time, listening to classical music.  Still, being that breathing is an activity requiring concentrated effort, he cannot be weaned off the ventilator, for obvious reasons, such as sleep periods. 

After his injury, he was only able to shrug his right shoulder, and had sensation to touch on only 12% of his body. His ability to now move the fingers on his left hand, move his right wrist and right elbow 90 degrees, move all his arms and legs substantially in a pool (where gravity and weight are not factors) even with 5-lb. weights strapped to each ankle, and have sensation in 67% of his body, is nothing short of miraculous, astounding his attending doctors and causing a giant stir in the field of neuroscience.

Perhaps most importantly, Chris can now feel the hugs of Dana and 10 year old son, Will.

Chris had become immediately intrigued by a theory postulated by Dr. John McDonald at a neuroscience convention, that electrical stimulation in conjunction with repetitive movements could re-awaken nerve function, and possibly even produce new nerve paths to form.  Chris approached McDonald, asking him to oversee an exercise program for him to test the theory.  But it wasn't until many months of faithfully following the regimen that a flicker of real, tangible progress was seen.

Dana relates how she first noticed Chris' left index finger move during conversation in November of 2000 (the month after the New York Premiere of SIT).  She said it moved in timing with a natural gesture one might make to punctuate a point.  She asked Chris if he was doing it on purpose, and he said no.  She suggested he try it.  He concentrated and commanded the finger to move, and it did.   They both wondered, “Where is this coming from?”   

In typical Chris fashion, he did not mention this until he saw McDonald backstage just before a speech he was to give, and simply said, “I think I have something you might be interested to see”, at which point he moved the finger.  Chris describes the doctor's reaction, “You'd think I'd walked on water!” 

Chris explains that there are nerve fibers in his spinal cord that have been dormant but alive, and his diligent exercise, which includes pulsing electrical muscle stimulation which actually makes his own muscles work (not just a machine taking his muscles for a ride), has re-awakened neural paths--or perhaps even coaxed new paths to form.  Only a post-mortem study would prove conclusively what is actually happening in Chris' spinal column, so it remains a mystery to sort out with further testing and exercise to see what can yet be accomplished.  It has been proven through an MRI that the part of the brain that would direct the movement is stimulated at the moment of finger motion, indicating that the path is being activated.  Since this shocking new development, his doctor ramped up his exercise program to new levels, and more progress has been made.  The future for Chris and those like him, is shining brighter.

On September 18th, (moved up a week earlier than previously announced) an hourlong documentary, “Christopher Reeve, Courageous Steps” aired on ABC.   The program provided a very intimate look at his private life, directed by his eldest son, Matthew, who recently graduated from Brown University.  Matthew had proposed to his father to address the goal he'd set for himself back in 1995, when he vowed he would walk by his 50th birthday (September 25, 2002).  Chris agreed to allow Matthew to follow his daily struggles, knowing that in his son's hands the truth would be told, no more, no less.  Last year, Matthew began filming and chronicled his father's progress.  We got to see that Chris did indeed meet his goal--in a pool, he walked a few eye-popping steps, though he has said with a wry grin, he was being held up by eleven people! 

Besides the touching glimpses into the Reeves’ daily life, the program gave much food for thought.  As Dana says, “There is no sense of pity or sadness in this house.”  A few times Chris was filmed looking directly into the camera, talking to the viewer with stunning one-on-one candor.  During the last of these brief segments, he said, “Just try sitting still for one hour, and see what it is like.”  He claims he has never once had a dream in which he is paralyzed; in all his dreams he is moving, enjoying his favorite activities.  He now believes, based on recent studies, that since that is the case, he is actually healing while he is asleep, as the brain activates neural paths during dream states.  The program was beautifully done, and two more follow-up installments are planned for the future. 

There is not a bit of vanity in him.  He never had a clue as to how handsome he is.  In “Courageous Steps” he was shown without any hair.  Chris has, since his adolescence, suffered on and off with alopecia, a skin condition which dermatologists don't fully understand, one which suddenly causes sections of hair to fall out.  In the program he said that he was taking a drug to keep his hair from falling out, but instead, it made his hair fall out--all of it, including his eyebrows, eyelashes and body hair, but he didn't stop the camera from rolling.  Thankfully, the hair is growing back in once again.
In time with the release of his book, “Nothing is Impossible”, Chris has been making appearances all over in a carefully coordinated media blitz.  He has recently done interviews with countless magazines, including Time, People, and newspapers too numerous to mention.  He has appeared on 20/20 with Barbara Walters, Larry King Live, Good Morning America, Today, and many other prime time programs, often with Dana at his side, amiably telling how they have coped and grown closer.

So it seems that medical journals, which deemed impossible the chances of a paralyzed patient regaining movement years past an injury, may have to be re-written.  The news of Chris' improvement has busted wide open the possibilities.  Chris contends that science must still come up with a cure, but now the quest for cure is not just a pipedream.

The Reeves contend insurance companies should provide ongoing therapies and equipment for those who become paralyzed.  Since those who suffer such injuries are usually young, in their most active years, they live long lives dependent on others for care, and return to hospitals often.  In the long run, making therapy available may make it possible for patients to return to active, productive life, some even leaving their wheelchairs behind.  This saves the insurance industry money in the long haul.  Chris also has urged Congress to make insurance companies raise the cap on catastrophic illness coverage to $10 million.  Chris' care costs $400,000 per year.  He has three insurance policies, all of which will reach their maximum by 2005.  “We'll cross that bridge when we come to it,” Chris replies, when asked what he will do when his insurance runs out.

Chris lobbies vigorously for stem cell research.  Embryonic stem cells are clumps of young cells no bigger than a pencil dot.  They are usually taken out of fertilized eggs created at clinics for in-vitro fertilization.  A large number of these cells are discarded because they are not needed by the couples who produced them.  Embryonic stem cells can develop into other kinds of cells, such as muscle cells and nerve cells, depending upon where they are introduced.  People who oppose embryonic stem cell research believe that the fertilized eggs are human beings and that it is immoral to destroy them by extracting stem cells from them.  Many people who are opposed to embryonic stem cell research say that adult stem cells--which are harvested from bone marrow, umbilical chords, and inside the olfactory section of the brain, where stem cells are constantly produced and most recently even possibly from the nasal cavity, where harvesting is easiest--can do the same job.  Some scientists disagree. 

There's also promise in therapeutic cloning--removing an unfertilized egg's nucleus and inserting the patient's own DNA into it.  The idea is to make tissue that will not be rejected by the patient's immune system.  A lot of people confuse therapeutic cloning with reproductive cloning--the creation of babies.  Chris opposes this, most people do.

While stem cell research using embryonic stem cells is a controversial, political hotbed at present, just this past month, California okayed funding for stem cell research, paving the way for other states to follow.  Chris reports that other countries are moving ahead with research.  Suddenly, the road to a cure seems inevitable, and there are many labs and groups of scientists jumping on the bandwagon, where few had dared to go previously.

All this, because of Chris' belief that “Nothing is Impossible”.  He has become an icon of inspiration to so many...those now laboring to find a cure, those in similar condition who now hope to see a day when they might overcome their paralysis...and those of us who face day to day trials of varying proportions, allowing us to keep it all in perspective and face our challenges with renewed strength and vigor.
 
One thing is for certain, if a cure is found, everyone will have Christopher Reeve to thank for it. 

And in the meantime, we all can learn a powerful lesson from someone who believes that the impossible is possible, and has proven it to be so.

- Originally published in Third Quarter 2002 issue of INSITE -

Sincere thanks to Mary Ellen Kelly, Eveline Marcello, Ed Stout, Kenneth Bi, and others who sent video clips and made me aware of printed articles/materials for this feature article.  I truly appreciate members' help in providing source material.

Visit the Christopher Reeve Paralysis Foundation website at www.christopherreeve.org and the Christopher and Dana Reeve Paralysis Resource Center website at www.paralysis.org.