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.
Join Our Movement
What started as an idea has become a national movement. With your support, we can influence policy and inspire lasting change.
Become an Advocate
Right now, we are beginning our third month of my wife doing daily dressing changes following surgery, serving me meals in bed, disposing of my bodily wastes, and Hoyering me out of bed or into a car for doctors’ appointments. It’s asking too much of her. She already has major responsibilities with our 14-year-old live-in grandson, babysitting and chauffering younger grandkids, and managing the household. I will have to find other ways to regain independence.
I’m trying out a new, taller, firmer wheelchair cushion that raises me up three to four inches. I now rely on a sliding board (Glideboard) for transfers, and it’s working — even going uphill a wee bit — and I’m able to do it mostly by myself. A new hardback gives me more support in my chair and helps me sit straighter. I have yet to perfect my transfer into a new style of shower chair for our bathtub, and I still need to improve my car transfers, but I’ve regained much of what I thought I had lost.
Interestingly, I’ve been applying a writing strategy I learned many years ago. Anne Lamott, a respected autobiographical author, wrote a book called “Bird by Bird,” based on her father’s advice to take things one small step at a time, taking time to get even the smallest details right. That is how LaMotte approached her writing as well as her life. In regaining my independence, I am experiencing a similar situation, making small gains inch-by-inch. And I’m finding out that, when you make small gains over time, it restores another human quality that is critical to keeping your independence: confidence.