ALS is not a war, it's a roller coaster.
Submitted by Atsugi on Sun, 11/29/2015 - 17:08
I often read about PALS fighting the battle and being told not to give up. Every time I read that, I feel a little confused, and now I understand why. That view assumes a war. And wars can be won or lost. Too often, people dealing with ALS think they're in a war that they're bound to lose. But that's not how ALS works. Normally, life in middle age is a fairly comfortable ride, with no idea how long it will last or how the end will come, so we ignore that. But life with ALS is more like an emotional roller coaster with obstacles thrown in our way. And there is some utility in knowing roughly how long the ride will last, and we can prepare for the manner in which it's going to end. My PALS and I were never involved in a war against ALS or a battle for life. Instead, we realized we were on an unlucky roller coaster that we hadn't signed up for. This new, unfortunate ride led to a quicker but fairly predictable end of life, and required some modifications for eating, drinking, communicating, and perambulating. So we approached our new life matter-of-factly. We knew that the ride would end soon, and we planned for that, to make the experience as palatable as possible. The thing that made all the difference was our attitude. We didn't fight against ALS, really--you can't win this fight. Instead, we adjusted to the roller coaster as needed, and, as before ALS, we continued to enjoy each day as it came. Although there were some sad or scary moments along our ALS journey, we were pretty much in control of our day-to-day living, and that sure did feel better than being sad and scared all the time. Life with ALS is still somewhat like any other life, except you know what the end looks like and you have a rough idea how long it will last. What you do with that knowledge can make a big difference in the quality of your days remaining. --Mike