Inch By Inch

For the past several months, I’ve been fighting to regain my independence, a lifestyle that has changed surprisingly little over decades of paralysis. I’ve been lucky to always be able to use a manual chair and drive with hand controls in a stock minivan with no adaptations. All of my transfers have been done by lifting my weight with my arms and swinging my butt into position and letting myself down. I self-cathed and was able to manage a more or less natural bowel program. I could eat what I wanted, within reason. But at 78, my age has caught up with me. Finally, it’s time to re-think how I do just about everything.

I’m not nearly as strong, agile, or confident as I used to be, and my skin is more vulnerable to breaking down. In the last few years, I’ve had to change to a suprapubic catheter and had a colostomy. I got a Turny seat to make transferring into my minivan easier. But the changes keep happening. Now I am faced with having to find newer ways of transferring from bed to chair, chair to shower seat, chair to car, chair to bed. At first, I could only think in terms of what I’d have to do in order to keep the same transferring routine. I’d need a new hospital bed that could go lower than my chair height, maybe do a bathroom renovation to include a roll-in shower, and maybe even buy a new chair and an adapted minivan! As it turns out, none of that is practical. Simply put, I can’t afford any of it.

Reluctantly, I started using a Hoyer lift for transfers, but the biggest change for a para like me has to rely on someone else. I’ve always had great respect for quads who have little choice but to trust others, but now I am in awe of how important patience, tact, planning and clear communication skills are in managing helpers and aides. In my case, I rely mostly on my wife for help. That is not an easy dance, for she has to give up some of her independence so I can regain some of mine.