How Goes the Battle?

Posted by Allen Rucker in Life After Paralysis on June 21, 2021 # Health, Lifestyle

"The art of living is more like wrestling than dancing, in so far as it stands ready against the accidental and the unforeseen…."- Marcus Aurelius.

Fellow Reeve blogger and old friend Tim Gilmer wrote me the other day with the topic heading, "How Goes The Battle?" Tim has been paralyzed for well over 50 years. I knew exactly which battle he was talking about -- the everyday, never-ending battle to stay healthy and sane while living with paralysis. It took me a while to adopt this attitude, and I'm glad I finally did. It saved me an enormous amount of wasted emotional energy spent on needless worry, guilt, and catastrophizing. When you are in the middle of a battle, you don't waste time thinking about future battles or the prospect of no battles at all. A battle mentality focuses on the mind.

Early on, this prospect was hard to fathom or accept. Most of us are used to getting sick or hurt, then getting well and filing it away as a bad memory. Yet, a disability is always there. It often demands your direct attention. What you don't want it to do is demand your indirect attention. It shouldn't linger in your mind when it is not an immediate concern. It's in those moments when you ruminate about its detrimental effect on your life or an obstacle to living fully that it owns you. And God knows you don't want that.

The older I've gotten, the less time I've spent worrying about my condition. I'm justifiably concerned when things go wrong and try to be diligent about fixing them. This demands the ability to compartmentalize your thoughts. Psychologists call the tendency to see your disability as an endless dark cloud hanging over your whole life as the mental error of Pervasiveness. This can both result from and/or lead to depression or despair. The truth is, in most cases and certainly, in my own, my paraplegia affects only a part of my life. On certain days, it can be a big part, a big compartment of concern. On many other days, it rarely enters the picture. As I recently heard a young disabled athlete say, my butt is glued to wheels – that's about it.

The idea is to condition yourself to wrestle with the irregular and often unanticipated fallout of a disability – in Marcus Aurelius' words, "the accidental and the unforeseen" --- as soon as it occurs. Stay mentally alert at all times. The vigilance this demands can be learned, just as other aspects of resilience can be learned. If you aren't ever mindful of real or potential problems, I promise they will turn around and bite you in the tail. And you'll beat yourself up for not being on top of things.

Last year was a health nightmare for me, and two major events were precipitous and unforeseen. The first began with an out-of-the-blue virulent infection popping up on my right little toe. Within twenty-four hours, I was down to four toes on that foot. If I hadn't gone to the doctor tout de suite, it could have quickly spread, and I'd be without two, three, or all five toes. Rule #1: never wait.

This amputation led to a scan of the femoral arteries on my right leg, which indicated "extreme occlusion," meaning hardly any blood was getting down to that poor toe. This led to three separate angioplasty procedures –laboriously inserting a long tube and balloon down the artery -- which resolved the problem. And then came the second event – I lit my thigh on fire by miss-striking a stick match and not noticing because I felt no pain. On this occasion, my wife and I waited, stupidly, thinking we could handle it on our own, which led to the ER followed by seven days in the hospital.

In either case, I didn't know what I was wrestling with, so I was completely unprepared. As it turned out, in the first case, I was fighting the fear of losing my entire right leg. In the second, I was fighting a bacterial skin inflection called cellulitis. For the burn to heal, I had to spend a lot of dead time lying on my back in bed, a routine that itself can be hazardous to your health.

This idea of wrestling as a mindset applies to many aspects of daily life. Some problems don't go away. They can shift shapes and reappear out of thin air, so all you have to fall back on is the alert button in your head required to leap into battle. Paralysis is just one of those problems. Even I wasn't in a wheelchair, I'd probably have many of the same concerns at my age, but in this chair, after years of myriad mistakes and mental lapses, I can see the operating strategy pretty clearly now.

Allen Rucker was born in Wichita Falls, Texas, raised in Bartlesville, Oklahoma, and has an MA in Communication from Stanford University, an MA in American Culture from the University of Michigan, and a BA in English from Washington University, St. Louis.

This project was supported, in part, by grant number 90PRRC0002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.