Rolling With The Punches: It's What We Do

Posted by Michael Collins in Life After Paralysis on February 16, 2018 # Health, Mobility

If professional boxers hope to survive for months or years in their punishing sport, they also have to learn how to dodge, parry and deflect punches coming from all directions; if they don't they are likely to end up with injuries of a lifelong nature. Those defensive moves are often described as "rolling with the punches:...to adapt to setbacks, difficulties, or adversity so as to better manage or cope with their impact on one's life"

After three decades of living with paralysis, I believe that rolling with the punches is a phrase that describes my life, and the lives of most others I know who share spinal cord injuries and similar disabilities. If that doesn't describe the way that most of us manage to make it through the years, I don't know what does.

For those of us who found our need to drive a wheelchair due to a traumatic spinal cord injury, the punches might have come slowly at first but they definitely came from all directions. Lying in the snow, immobile, next to the ski chairlift tower where I had fractured my cervical vertebrae was not actually the low point of my life as I felt at the time. That was just the opening salvo in what would be a long battle to keep somewhat healthy and alive as long as possible.

The following 6 1/2 months in the rehab ward allowed me to experience the frustrations of no longer being able to independently accomplish many of the daily activities that I had taken for granted throughout my life. Through firsthand experience, I learned about many of the maladies that people who are paralyzed must be aware of; urinary infections of all types, deep vein thromboses, pulmonary embolisms, autonomic dysreflexia, uncooperative (and sometimes "too cooperative") bowel programs ,kidney stones, hemorrhoids, sepsis, acid reflux, and Decubitis ulcers. Fortunately there are tests to help identify most of those, and drugs or treatments to help counteract them. Despite that, some of those issues were recurring when least expected or wanted.

I survived those early challenges, but was soon to learn that it was just the beginning of the punches and blows that would be aimed at me on a regular basis. Learning to dodge them, and sometimes fight back, became instinctual and a part of my daily existence.

Locating and retaining a reliable caregiver, who was also honest, has been a challenge to this day. In that time before most disability civil rights laws took effect, society and the business community seemed reluctant to accept me as a returning member. Accessible housing was virtually nonexistent, although it made no sense to me. Developers, contacted in the early stage of their projects, refused to leave out bathtubs and allow me to pay for accessible substitutes--installation of a roll-in shower--even though I offered to rent a second apartment for use by a caregiver.

The public transportation system of fixed route buses was inaccessible, and the paratransit service proved unreliable and resistant to change. Maneuvering through the business district while trying to shop or go to a restaurant was an exercise in frustration, as unnecessary steps and heavy doors made spending my meager resources an impossibility in many cases.

The decision to keep working for a living was made early on, but showing up for an interview in a wheelchair seemed to be an unusual occurrence in those pre-ADA days. My first interview, for a job I was extremely qualified for, took place parked on the sidewalk in front of the building's six steps. The next interview, as a finalist, required using my portable ramps to maneuver down an alley stairwell to meet with a board of directors in the basement conference room. For some reason I was still unemployed after all of that.

Eventually things improved; I rolled with those punches and more, found a job and accessible housing, and I've had more than one good person providing homecare since I left the hospital. Many disability civil rights laws have been passed in that time, and an amazing group of dedicated professionals and disability advocates make me proud to join with them in rolling with even more punches, and fighting back often, as many more punches are anticipated in the near future.

© 2018 Michael Collins