Normal life is what Mary and I keep trying to claw our way back into as we plod down the road with ALS. There are so many changes that come along, knocking our life off “normal”, and the boxes of new challenges keep getting delivered. Sometimes we are able to pretend that the delivery man has forgotten our address. More recently, however, a flurry of new challenges shows up on our doorstep. Solutions tend to bend your life in a direction that you don’t like.
The list of life items within reach keeps getting shorter. There is also a shifting, tricky, gray area of life activities where you must judge, ‘is it worth the effort and worries?’ We have been pushing the boundaries of the gray area pretty hard, which has been worth it most of the time. As things progress, we are beginning to be influenced more and more by continuous, inescapable distractions such as mucus in the mouth and airway needing suctioning, or just plain feeling bad.
While there is no conquering story of triumph to be had with this disease, joy and the feeling of normalcy still make up most of our life. I feel like this is made possible by learning to appreciate the simpler aspects of life, and by redefining what is normal.
A ‘normal’ activity that Mary and I do is walking around our beautiful neighborhood while she drives my electric wheelchair. You find that you start to notice, and if you are lucky, appreciate smaller and finer details. Occasionally, we will roll down to a bridge and wait for the evening Amtrak train to pass under us. My beautiful wife would wave and do the universal honk-your-horn arm pump. Sometimes the engineer would beep. Then, as a little time went on, the train would always beep. More recently the train is doing a longer series of beeps, a more suggestive series of b… “Hey! Knock it off buddy, she’s mine!”