It is usually pretty hard to remain upbeat when dealing with a new spinal cord injury or other type of paralyzing disability, but I think a change is overdue. The first days and weeks following an injury, or post-diagnosis for some “crippling” disease, are usually filled with a constant series of frank discussions warning patients and their families of the additional problems and complications which make up their future. In far too many cases, at least in the past, the dire predictions could extend out to a lifetime of challenges. Dwelling on the negative could be setting newly paralyzed individuals up for failure. Is that really the best we can do in this enlightened age?
The beginning of paralysis does not mark the end of life, except in rare instances. Medical professionals should be expected to balance out the negatives with an equal or greater number of positive examples about how successful thousands of our peers have been when getting on with their lives post-paralysis. How to inform patients about the opportunities that lie ahead, especially in those first days and weeks, should become part of the curriculum at every medical, nursing and therapy program in the world.
It is been many years since my immobile body was hoisted into a helicopter for a ride to the rehab hospital where I would spend the next six months of my life. The liquids that were dripped into my veins to minimize pain and perhaps dim my memory of that time worked as intended and helped me avoid unnecessary pain during those first few weeks. Those drugs might also have been designed to slow down my thought processes so I wouldn’t ask so many questions, because I had a ton of them.
I now know that if I had asked all of my questions it would have been unlikely that anyone could have outlined what my life would be like almost 27 years later. Here are some examples of subjects that interested me, the initial guidance I received, and what I would tell that younger self if I was giving advice to myself today.
Employment. Shortly after my injury my previous employer attempted to visit me in the hospital to discuss opportunities to return to work again. It would have been nice to get back where I could make a decent salary, retaining my seniority and an accumulating pension, but that was not to be. My primary physician told them that I was paralyzed so would never be able to work again as he turned them away. It is ironic that the specialty of that particular physician was rehabilitation medicine, and I wonder how many others who he treated during his career were actually dissuaded from ever working again because of his prejudices.
That doctor failed to douse my hopes and dreams, as I learned very quickly that I could not survive on benefits alone. My advice to myself, or anyone else who asked, would be that new ways of working might be necessary, but that the world of employment is there for the taking by those who have a desire to work. It might require some higher education, specialized training, assistive technology and diligent research but someone out there is willing to pay you appropriately for the product of your work. Finding the ideal job will not be easy, but once past the numerous roadblocks the long-term benefits will be worth it.
The paralyzed future. I recovered some strength, movement and function while hospitalized initially, although some improvements were almost unnoticeable. Six months later I headed out into the real world, armed with warnings that my physical capabilities might never change. I was provided with lists of nursing homes where I could live, providers of durable medical equipment that could help me survive each day, and examples of assistive technology that could help me accomplish tasks even if my condition did not change.
Thankfully I discovered, as have many of my peers, that the rehabilitation/recovery phase of this life is ongoing. Periodic visits with rehabilitation professionals and exercising what I can in my own home on a regular basis have kept me reasonably healthy.
Those who are newly injured or recently diagnosed with some type of paralyzing condition have an even brighter future. Research scientists around the world are seeking new ways to restore function to the paralyzed body, and while some of those advancements may not benefit those of us who have been injured for decades, the odds are much better that human trials may soon be available for younger subjects. In the meantime, it pays to maintain as much function as possible, eliminate risks to health, and follow the news to learn about progress that is being made. Sam Maddox does an excellent job of keeping us updated through his blogs found on SpinalCordInjury-Paralysis.org/blogs/18.
Seek examples of what you want to be. When I was first injured, much of the literature and professional advice I was given involved a much shorter lifespan expectancy due to my spinal cord injury. One of my early requests was for someone to introduce me to an “old quad.” The issue of Spinal Network Extra that I was given while still in rehab contained an article about an elderly gentleman who had lived with a similar disability since he was very young, so I was satisfied that I could do that too.
There are many examples of people who, though paralyzed for varying reasons, continue to make a real difference in our world. Thanks to their efforts we have the Americans with Disabilities Act and the similar Convention on the Rights of People with Disabilities (CRPD) expanding disability rights and opportunities around the globe.
These individuals, and many others like them, can be found in leadership positions in private industry, as elected officials, working in nonprofit organizations and at all levels of government at the local, state and national levels. They did not let diminished expectations related to their disability impact the quality and volume of their contributions. It is time for the healthcare community to make heightened expectations the norm from the moment the rehab process begins, rather than letting those who are newly disabled discover it themselves at a later time.