When a loss of capability feels like a loss of independence
With MS, I'm trying to adjust to things I can no longer do on my own
I stopped driving nearly five years ago. That was probably six months or more after I should have. By that point, I was doing it mainly by using my truck’s cruise control and occasionally having to use my gradually weakening arms to lift my right foot off the accelerator and onto the brake pedal. My double vision always seemed to be at its worst when going home, so I started compensating by placing a sticker over one lens of my sunglasses so I didn’t have to drive with one eye clenched shut.
To say the least, I was unsafe.
I considered hand controls and was even taught and certified to use them, but by the time I was ready to use them, it was too late. I don’t know why I waited so long and was so stubborn in the face of change.
Wait — I think I do understand, though I’m not excusing it. I don’t think it was the convenience of driving, or the thrill of shifting through the gears of a manual transmission. I did feel more useful when I could share the burden of transporting a five-person household, but it wasn’t that either. It was that driving represented an independence and freedom that nearly all American kids can’t wait to attain when they turn 16.
Oh, the responsibilities I’ve known
I don’t think I fully realized it when I was that age, but operating a car is a big responsibility. Obtaining your driver’s license is essentially an official acknowledgment that you can be trusted to control a machine that’s capable of causing quite a bit of destruction. Everyone knows that they’ll have to give up that responsibility at some point, but there’s a difference between an accepted norm and an unexpected disease, like my multiple sclerosis (MS), taking it away.
Cooking has been another responsibility that I’ve given up since being diagnosed with MS. I wouldn’t go so far as to say I was ever a gourmet, but in all honesty, I was pretty good. I started young and didn’t realize at the time that graduating from head bowl licker to budding chef meant that Mom trusted me to handle sharp objects, heavy pots, and a hot oven. I just thought it was fun. I never looked at it as independence, but I do now — and I miss it.
I don’t miss the responsibility of cleaning as much, but multiple sclerosis has a way of making me miss that a little, too. Even by the time I had my own house, I still thought of cleaning as a tedious chore rather than an act I’d been entrusted to do independently around potentially dangerous chemicals. It’s not as glamorous as driving or serving a meal of my own creation, but in a way, it was still freedom.
I’m sure many things represent a loss of independence to those of us with multiple sclerosis, but the last thing I’ll mention in this column is yard or garden work. No one had to impress upon me the level of trust that goes with being allowed to operate lawn and garden equipment by yourself. Mowing the grass can be a chore, but as I write these words, I’m watching someone else cut my grass, and I wish I were still able to do it myself.
It’d be different if I were simply too busy to do any of these things. If I had to hire a driver, cook, house cleaner, or gardener because I didn’t have the time, that would be one thing. In my case, it’s not because I have many more important things to do. It’s a matter of capable versus incapable, and incapable means a loss of independence to me.
I drive a wheelchair now. Mine tilts and reclines, so it’s a bit heavier than most. It’s not a car, but there’s a certain amount of responsibility that goes with it because like any vehicle, it too is capable of destruction. A quick look at the baseboards and door frames around my house, not to mention one of my toes, is proof of that.
I hope it won’t happen, but I’m resigned to my primary progressive MS possibly getting to a point where I can no longer safely operate a wheelchair. If and when that day comes, resigned or not, that’s going to be another break in the wall of my independence.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Comments