Fear Of The Future

I was reading an article in The Washington Post online about O.J. Brigance, the once famous NFL player now struggling with ALS. Actually he's been struggling with it for 11 years, an unexpected life span with such a voracious illness. The article made much of his 11 year survival. Yet if you look at his picture you will see that he has both a feeding tube as well as a breathing apparatus. With this kind of technology, along with his tremendous support network, that longevity is not necessarily surprising. Consider Stephen Hawking.

This is one of the difficult questions I face. I love life. I love being alive. Beyond ALS, I am surprisingly happy in my life, busy, active. I have people in and out almost daily. My HCA's are, for the most part, tremendously positive and supporting of me. Life is good.

Then there comes the living challenge of ALS. I am losing my arm strength. Soon I will not be able to feed myself; I will need someone to feed me. After that I will lose my ability to chew my own food; I will need a feeding tube to stay alive. Finally my diaphragm will fail; I will need an external breathing device along with having to have a tracheostomy.

I have always said that I do not want a life on machinery. Yet that is where I am already, the machine in question being my Power Wheelchair, or the slings and lifts I use daily. Perhaps I should say I don't want a life with invasive support procedures, like a feeding tube. I have always been a carnal person, loving the physical pleasures in my life, the taste of a great meal, the aroma of a fine wine, the warmth of a hand held in mine. These are the things I am now losing, or faced with losing.

So as the fateful day approaches, that day when I can no longer eat or drink, unable to enjoy the taste, the smell, the sensation, is that enough to make me want to leave this life? I have always been confident that my answer would be yes. I want to die "natually" rather than live "articially". These days my certainty is waning. I no longer know what the answer will be when that day comes. For now, all I can do is enjoy what is still in my life, without worrying about the future. That's as good as it gets.