>Two things happened four months ago that made blogging almost impossible for me: I started using a wheelchair and increased my work hours. I was using an old “student desk” with a knee hole about fifteen inches wide. My wheelchair footrests don’t fit in that width so, for some weeks, I sat at an angle to the desk with my arms stretched out to reach the keyboard. After six hours using the keyboard at my office, my arms were too tired to type without support. I stopped typing at home. Terse emails. No blogging.

It took me a while to realize that’s what was happening. I had to live through a few weeks when I thought I just wasn’t getting around to it before I realized I was avoiding my desk. It took a bit longer to figure out a solution and implement it. Now I my desk is a sheet of plywood, set high enough so my knees and chair roll under it easily. Today I reached a switch at the back of my computer, something I couldn’t have done prior to the desk switch. Yay, an unexpected benefit. I’m hungry for those.

I’m still learning how to live with the wheelchair. It’s all trial and error. This morning I tried putting the wheelchair in a different spot when I transfer to the toilet. I’ve been asking for help with that transfer almost all the time. That means I have to be accompanied to the bathroom—a pretty limiting factor. I’ve made the transfer once with the chair in the new position. It’s promising, but I won’t know until I’ve tried it several times whether it is the new “procedure.” That’s the nature of this beast.

I’ve been thinking about the nature of the adjustment process. It’s really the process of learning, the process of experimenting.

First, (as I discovered with my blogging impediment) I have to recognize a problem. I have this informal goal of adding to this blog every other week. The “missed that one” signals had to add up to a noticeable point. Life does intervene and I want to allow it, but I want to honor my commitments to myself, too. I had to be conscious that something wasn’t right.

Then I had to identify the characteristics of the problem and apply the serenity prayer. (“God g rant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”) One of the things that’s not right is that my hands and arms are increasingly affected by my MS. By afternoon, my fingers are missing as many keys as they hit. I can’t change that. I do better if I can rest my arms against the edge of the desk and, with that old desk, I couldn’t do that. That was something I could change, so I (with help) did.

My husband built my new desk. The project description: the new desk had to be high and wide enough to roll under. It had to be positioned so I could drive to it. It had to be near power. Ideally, it wouldn’t be in our living room. Here I am, enjoying all those features. I’m at the “trying the solution” part of the process and I’m mostly happy.

This solution involved rearranging, basic carpentry skills, some time and some screws and plywood: a low-risk trial. My toilet transfer difficulties might be solved by purchase and installation of a $500 grab bar…or they might not. I’m experimenting with wheelchair placement because it’s a cheaper alternative. The “error” part of this equation requires being willing to be wrong. It’s a risk of time, money and those most precious commodities (especially with chronic illness in the picture): physical and emotional energy.

When the solution doesn’t work, I’m back around to recognizing and analyzing the problem again. The good news is I have more information. The bad news is I have more emotional baggage. I (like much of the world) have been watching parts of the Olympics. For me, watching someone walk is miraculous. Imagine my stupefaction at seeing the edges of human capabilities. More wondrous, these kids can make major mistakes and then return to super-human perfection for the rest of their performance. These athletes are not just demonstrating physical skills; they are psychological Olympians as well. When what I try doesn’t work, I have to get over it and find something else to try.

The hardest part, for me, is to be willing to do this over and over, to be willing to have this be my life. There seems to be so little stability, such a small amount of coasting. My life is an effort. Wishing for it to be otherwise, I lose my patience and my peace. It is better for me to accept the never-ending process.

  1. Recognize the problem
  2. Identify the characteristics of the problem
  3. Find a potential solution
  4. Try the solution
  5. Be willing to be wrong
  6. Analyze—and release—the failure
  7. Try something new
  8. Be patient with the process
  9. Repeat steps 1 through 8 forever