Tuesday, September 25, 2007

Learning What It Means To Inherit The ALS Gene

ALS is not a fight you can win. It is not like cancer that can go into remission, it is not like blindness or Muscular Dystrophy where you still have a life. If you are a fighter it is like having your hands tied behind your back while you are beaten to the ground. It is like being sentenced to death and buried alive because your mind still works just fine. And the end is the worst. In my family it only takes about a year until your breathing is stilled. In the last months you are trapped in the belly of the shark.

Like Huntington's, it is a disease of the damned. There is no treatment - there is no cure. When you get ALS there is no hope. There is nothing you can do to prevent it. You can take good care of yourself, you can be fit and strong like Lou Gehrig, it makes no difference. You are finished.

Without any hope of beating it, it is probably best not to know that you have inherited this gene. Of course, when you do know, your mind works on what steps you can take to avoid this disease but there are none and you go a little mad with the idea of that.

So the question you must ask yourself is how do you live a happy life with the knowledge that your next step may be the one that falters or the glass you drop on the kitchen floor may be your first symptom?

ALS is torture to the mind even though it is the body that degenerates. That all the power in this belongs to God and I have no tools to prevent the eventual onset of symptoms is pure torment. I am angry - I want a fair fight. At least a judge and jury before I am sentenced. God give me any impossible task and if I succeed may I not please live?

We live for today but we dream of the future. What we do today lies squarely in the context of our plans for tomorrow. Close your eyes because this tomorrow is a pit of darkness.

Everyone dies. But we are programmed for survival. Life is sacred. We struggle to overcome disease and disability. It is not in our nature to easily accept death. Although I do not yet have any symptoms, I have lived in fear for many years. I am learning, I am loving, I am planning a future. I am slipping through the woods at dusk, quietly, lightly, as though I am being hunted by a predator from the pit.