Is Life Worth Living With ALS

Yesterday someone searching the web entered a search term on the Internet that brought them to my blog. The searcher entered "is life worth living with ALS" and ended up with me. I am not sure how they would feel after reading some of the more negative posts. On the other hand, I think my blog shows that life can be lived, and fully lived, with ALS.

It's a tough question when you really face it. At the end of this disease I will be fully crippled, unable to walk, talk, eat or even breathe without some sort of medical aid. I will be thin, wasted, drooling and weeping. It is a sad finish to an active life. So I understand the question more than the searcher would know.

The question is not "is life worth living with ALS?" The question is really "at what point in my ALS progression do I want my life to end?" Regardless of what happens along the way, ALS is fatal. ALS will kill you. Something kills each and every one of us. The challenge is not about dying, it's about living, something the searching implicitly knows simply in the phrasing of the question.

It is an issue of quality of life and the belief systems. Some belief systems reject suicide so completely that the issue of life being worth living is moot. They will live it until they die of something. For others who can allow for the act of seppuku or simply an overdose of Percoset, the option of ending life becomes more visceral and palpable. If quality of life is so bad that I cannot live it, then can I end it? More cogently, when is quality of life so poor that I want to end it?

That question has a highly personal and individual answer. For some, each day brings just enough to make us want to see the next day, whether we have ALS or not. For others, the day arrives when we conclude that the joy of seeing tomorrow does not make up for the pain of having to live through another night. When that day comes, perhaps life with ALS is not worth living. That is a thoroughly individual decision.

Perchance the best answer to the searcher is this. Whether or not life with ALS is worth living depends entirely on you. ALS is simply the way you are going to die. You decide how you are going to live. You decide what is quality in your life. You decide when enough is enough.

For me, life is worth living today. When it is no longer worth living then my life will end regardless of ALS. As long as the pain of staying is less than the pain of leaving, I will stay.