It's The Wait

There are two sides to the ALS longevity story. We all hear about the exceptional people who live for many years with this awful disease. People still ask me why Stephen Hawking lived for so long. The answer is simple; machines. That plus an excellent health care system and a reasonable bank account. Those are factors which lead to a longer life with ALS.

Yet we hear so litte of the other side of the story, the negative exceptionalism, the incredibly short life spans with ALS. I've heard many of these stories, yet so few are in the media. Today I read of another PALS who was diagnosed last June and passed away late this May. From diagnosis to death was a journey of less than a year. The shortest I have ever heard of was three months from onset of Bulbar ALS to death.

This is why the published expected life span with ALS is so variable. I've heard it expressed as 3 to 5 years from diagnosis, or as 5 years from initial symptom onset. In either case, I havc clearly surpassed my "best before" date. Others have done better, others have done much worse. It is the same with all things in life; those who do well, those who are average, and those who do poorly.

I'm still not sure which is better; slow, fast, or average. I think I might have preferred a rapid decline. It would have been much more dramatic, much more noticeable, harder to deny or ignore, and a whole lot less expensive. Yes, there are things I would have missed. I will start missing other things the very moment I die. Life will continue on without me, as it would have if I had died 3 years ago.

I don't mind being alive. I doubt I will notice being dead. It's really the wait that's killing me.