Why we work to walk when we can roll

Posted by Michael Collins in Life After Paralysis on October 25, 2016 # Technology, Rehabilitation

Attitudes about the permanence of paralysis have changed greatly during the past few years, and I have had a front row seat to witness that evolution. Slowly, my own attitudes have changed as well and that is a positive outcome.

Having spent the better part of three decades seated in this wheelchair as a result of a fall while ski racing, I now realize that my attitudes have been a direct result of influences by the teams of medical professionals and other individuals I was exposed to during that time period. My doctors did not pull any punches; they and the therapists who treated me each day were 'matter of fact' when they advised that my cervical spinal cord injury was permanent and that paralysis would be with me for the rest of my life.

I had no reason to doubt them, as they obviously should have known what they were doing. Two years later I learned that those doctors could be fallible as well.

A chance meeting with someone who worked for my prior employer made it clear that I needed to follow my own judgment when it came to the future I would lead. She advised that her attempt to visit with me while I recovered in the hospital, for the purpose of determining when I would be ready to return to work again in some accessible job, had been rebuffed by my physiatrist, or rehab physician. He had flatly stated that I was "paralyzed, so would never be able to work again." Heeding the advice of someone whose role was to get me rehabilitated, they did not try to contact me again.

Life would have been much easier if I could have returned to the profession that I knew and loved, but that opportunity had been pushed aside without my knowledge. My desire to earn enough income to pay my monthly expenses was the force that drove me to return to work--for the next 22 years. I never did check back with that physiatrist to let him know how wrong his initial prognosis had been.

The professional advice that I did heed was to live each day like my physical condition would not change. Initially, there was no talk of a possibility of being able to walk again, or even to regain some use of my hands and other bodily functions that had been lost or diminished due to paralysis.

In order to remain positive, I considered what few advantages there were to living life while using a power wheelchair:

--I was able to keep up with friends who were walking, and even those who jogged slowly, for an extended period of time with minimal effort.

--In the era when I was injured, the Air Carrier Access Act, Americans with Disabilities Act, Section 504 of the Rehabilitation Act and several other laws benefiting people with disabilities were either in effect or being enacted. The future looked promising, although lack of enforcement and an unwillingness to make the required modifications or changes in policies that the laws required made them ineffective at times.

--Parking lots throughout the country were being restriped with "Reserved" signage added so that there were places where I could count on being able to unload from a wheelchair van. Those spaces are still there, but today there are far too many sedans and questionable vehicles using those same limited number of spaces.

--Special spaces for wheelchair seating were being added in stadiums and theaters. Unfortunately, that usually resulted in seating options that were restricted to the "nosebleed" upper rows of stadiums or in the front few rows of stadium-style movie theaters. Some of the advantages of those spaces disappear whenever those seated ahead of us stand to witness an exciting play and we must remain seated.

An equestrian accident in 1995 was the opening event in a saga that would eventually be the catalyst for changing my attitude from acceptance of paralysis to believing in a positive future. I was already well into my 'life term' as a survivor when Christopher Reeve was thrown from his horse, and will admit to having questions about whether his personal drive to search for a cure would sidetrack the advances needed to help those of us with older injuries survive and thrive in a society that too often proves to be inaccessible.

It didn't take long for the world to realize that there was a greater force at work than just one man promising to walk again; Christopher and Dana Reeve were not going to stop until they achieved their goal.

Reeve used his connections in the world of entertainment, finance and politics to bring awareness to different communities across the globe and inspire researchers to dedicate their careers to successfully find breakthroughs in spinal cord research. Researchers in labs around the world now toil in a coordinated effort to find potential cures for SCI and many other neurological conditions; their work is thanks to the promise of walking again that the Reeves shared with the world.

Now that some of my friends have undergone locomotor training on treadmills, and even walked independently using exoskeletons, it is clear that a brighter future lies ahead for some of us who now use wheelchairs as our normal means of transportation.

In recognition of that, my "advantages list" has now shifted to include the value of being able to stand or walk again:

--When people in front of me stand at a sporting event or concert, I can simply stand to watch along with them; no more sore neck from trying to watch a movie in the front row of a theater.

--It will no longer be necessary to have a special parking space; I would be able to park anywhere, step out of my vehicle and walk on any route to the business entrance.

--No curb cuts or ramps? No problem, as concerns about steps and curbs will be a thing of the past.

--Walking provides better cardiovascular conditioning than pushing a wheelchair or its joystick, and improves circulation throughout the body.

--Standing and walking help the digestive process.

--Huge savings on the costs of personal care attendants are possible if able to get out of bed, use the bathroom and get dressed by myself.

--Employment searches would no longer need to include an interviewer trying to pre-determine what type of workplace modifications or other reasonable accommodations might be needed to do a particular job.

Even if the dream of walking again doesn't work out for me, scientists are discovering the means of restoring sensitivity, movement and function that can benefit some of us. In anticipation of that day, I will continue to work on maintaining what I can control just in case there is an opportunity to take advantage of those advances.

© 2016 Michael Collins