Life is interesting for almost everyone. There are times when we rejoice in the love of friends, family, food, work, and the beauty around us on planet earth. Yes, there are times when we hate life.
If you’ve ever had a bad case of the flu then you understand the sentiment.
Not every aspect of life brings pleasure. ALS is a neuromuscular disease that robs living and life. It’s a complex disorder of unknown origin with a fully known outcome.
In between the disease’s onset and death is life that degrades; an inexorable journey from living normally to barely breathing and unable to move. Those with ALS— and everyone else around them— know the end is coming and it does; both slowly and quickly at the same time.
ALS averages about three to five years from onset to death. Sometimes less. Sometimes more. Many physical capabilities steadily decline during that period, too, and usually reach a point where one cannot breathe without mechanical intervention and death intervenes.
That means the ability to walk, talk, smile, chew or swallow food, or just hold something in your hand becomes difficult and then impossible.
Who wants to live that way?
I want to live but that’s not living. ALS is a slow motion death sentence that robs victims of life so slowly that it is almost imperceptible but always inexorably moving toward the same destination.
I want to live.
Yet, thanks to a wickedly cruel and perverse disease, each day I live a little less than the day before.