I had been coping pretty well, most of the time, over the last couple of years. Much of the strategy in coping seemed to be centered around the task of inventing cleaver new methods to keep going in the life that I liked. I was able to continue enjoying most of my hobbies, albeit in a diminishing fashion, and pretend that all was still well. I kept having the fear that once I cross a certain threshold all would collapse and life would no longer be worth living. I still have this fear, but I have recently crossed certain thresholds that I thought would be unbearable, and not that much has changed. Losing the ability to independently get around was the one thing that I thought would cross the line.
I recently went with friends in an RV to support a friend competing in a race that consisted of paddling 340 miles down the Missouri River over several days. The RV had several tall steps to get in and my electric wheelchair would not fit inside. I wanted to go, but was extremely nervous that this would be an unpleasant disaster. I knew that I simply could not get it accomplished no matter how hard I tried. They assured me that they wanted me along anyway, so I MADE myself push aside the worry and embarrassment and just go. I have to keep telling myself that this is the shit you just have to do in order to ‘not quit’.
I got around inside the RV by people dragging me around on the floor until reaching the desired destination and then hoisting me up and plunking me into the various chairs. Stupid little things in life, such as the bathroom, are of particular worry and difficulty. They plunked my in my electric wheelchair when outside and I was off, to some extent at least. My friends were truly great and the trip was well worth it.
My take away from this trip is that I had crossed a major threshold, and life still went on. I was anything but independent. There was no pretending. I don’t want to give the impression that ALS is not total bullshit, but so far, step by step, there never seems to be that one thing.
Thanks for making it clear some of the things that you and my husband deal with. It takes a lot of guts and energy to deal.
And yes, we agree it’s total bullshit