The Value of Hope

Posted by Michael Collins in Life After Paralysis on October 16, 2015 # Health

I often reflect back on the time when I was injured and, in doing so, compare it to the dark ages. Just like for those who lived in Europe during the time of the great plague, for many of us who were newly paralyzed in 1988 it was a time without much hope.

The world that we suddenly faced was unlike anything that we had encountered in our pasts, and we were definitely ill-equipped to deal with it. Sure, the late 1980s were not that long ago but it certainly seems that there have been plenty of changes in the world of Spinal Cord Injury during that last quarter of a century. I just wish that some of those advances had occurred a little earlier in my life with a SCI.

Looking back, I now recognize why those early years were so different than today; there was little hope being given for a better future for those of us who were newly paralyzed. The medical professionals who treated and counseled us didn't believe in providing us with false hope, so most did not bother trying to give us any. It was more like "This is what it is, deal with it, accept it and get on with your life." So, we did just that.

My neurosurgeon entered, and departed, my life shortly after I was moved from the intensive care unit to the rehab ward at the same hospital. He didn't embellish the situation, but simply informed me that he had reviewed my x-rays and learned that I had three fractured vertebrae and surgery would not be necessary; the nature of the fractures had allowed the spinal cord to decompress on its own.

He also shared that I would be permanently paralyzed, and basically nothing would work from the shoulders down. Was there any hope, even slight hope, that I would walk again? No, not with my injury. Since he was a professional in this field, I accepted his words of wisdom and didn't plan to waste time trying to learn to walk again.

That was it; there was no PowerPoint presentation, handbook, lecture or warranty involved. Other very important lessons related to spinal cord injury, such as those dealing with Autonomic Dysreflexia, deep vein thrombosis, bowel management and controlling rampant spasticity would come later and out of the mouths of others.

My physiatrist, or rehabilitation physician, was a nice guy and seemed knowledgeable. I don't recall any conversations with him about rehabbing me to return to a lifestyle I had grown to love; instead, he liked to borrow from my collection of movies, as we each owned a Betamax video player. I learned a couple of years later that he had turned away my previous employer when they tried to visit me to discuss a possible return to work on the railroad, where I had worked for 23 years. It would have been in a different role than conductor, of course, but this doctor educated to rehabilitate had advised them that I was paralyzed and would never be able to work again. I am glad that my subsequent employers did not feel that way.

It makes me sad to think that, thanks to these doctors and others like them, there are undoubtedly hundreds or even thousands of others whose hopes were never rekindled when there was an opportunity to do so during the early stages of life with paralysis. During those six months that I was in the hospital I witnessed a few people who arrived on a gurney, paralyzed, and walked out after treatment several weeks later. Since their disabilities were different than mine, I didn't let their situations create any false hope that I might one day be able to do the same.

Then, in 1995, things began to change; Superman joined us. Well, not exactly Superman, but Christopher Reeve sustained a high Cervical Spinal Cord Injury due to a head-first fall while riding in an equestrian competition. The accident garnered plenty of media attention, unlike the accidents that paralyzed thousands of other individuals that same year.

Those of us who had been at this for a while knew that Reeve's life would change dramatically, and that the level of his injury assured that, even with his financial status and notoriety, he would not be able to compensate for what he was to endure physically and emotionally. None of us expected that he had any hope of walking again.

Fortunately Christopher Reeve was surrounded by a bevy of supporters, including his wife Dana, who were convinced that it would be possible to find a cure for Spinal Cord Injury and similar paralyzing disabilities so that he and others in his situation could walk again. Reeve became the defacto spokesman for thousands of paralyzed individuals who were not satisfied with being told that they would not walk again. He committed to the cause of finding a cure through research, and refused to be deterred by the fact that there was little or no funding being allocated to it at the time.

The rest of that life story can be found here, and in many other locations. The Reeves' commitment to this cause eventually led to the allocation of billions of dollars of previously unavailable funding for stem cell research in California and elsewhere. Besides raising awareness about the real cost of paralysis, his high profile enthusiasm served to rekindle hope for a cure for millions of people around the world.

Hope, coupled with hard work and perseverance, are ingredients that will be necessary for anyone seeking some return of bodily functions, or the ability to walk again. The reasons for hope are there, thanks to Christopher, Dana and the foundation they left behind. Thankfully many of our peers have the perseverance and are putting in the hard work required to test out the many different options for recovery being developed in those labs now funded due to the initial vision, beliefs and seemingly tireless advocacy of Christopher Reeve.

Who knows? Maybe there is still hope for improvement for me and others whose hopes were dashed years ago.

Note: This was written on the 11th anniversary of the October 10, 2004 death of Christopher Reeve.

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