Self Confidence

When I was in my early thirties, I did not lack in self-confidence. In fact, when it came to playing racquetball, tennis, and my work, I was at the top of my game. From being a pilot to climbing mountains, there were few limitations. I was in control of my life and life was pretty darn good.

Today, if I can open a jar of pickles without my wife's help, I am ready to do a victory dance around the kitchen (that is if I could still dance). A great accomplishment these days is to replace a handle on the lawnmower or perform a minor repair on my wheelchair.

I have said it before, but I believe the mental and emotional aspects of living with Kennedy's Disease are as difficult as the physical issues. As I lose confidence in my abilities to perform simple physical requirements (e.g., safely walk from the car to a building or even stand up from a chair), I begin to question everything about my life. For years, I tried to compensate for my weakening state, but after many falls and several serious injuries, I realized that some so-called 'normal' activities just could not be performed without some assistance.

For example, in my final few years of working, any stairs, whether three or thirty, were out of the question. Walking long distances wiped me out. Those short little 'wheeled' meeting room chairs would force me to stand through a meeting because I knew I could not get up afterwards without help. As I became a little smarter, I found myself scoping out all the walkways and looking for alternative entrances and elevators within a building. I found a chair with a pneumatic lift and wheeled it into all meetings. I paid a terrible price for not being willing to say, "I can't." My life was one little 'white lie' after another until I finally decided to express my limitations. And, after I finally did, the world did not end. Actually, I found everyone was very kind, understanding, and accommodating. If only I had been more open and honest about my situation earlier in life, it might have been a lot easier.

Living with Kennedy's Disease is a never-ending learning process. You learn not to take anything for granted. Losing one's confidence is not so bad either. By questioning your abilities to perform a specific task, it forces you to evaluate the safety of the attempt.