Wednesday, January 21, 2004


A friend, who let us just say would not be caught dead in a Burger King, who follows a strict but indescribable set of dietary proscriptions, and who has been very kind to overlook all my dietary adventures while keeping his mouth shut, nonethless writes with genuine concern:

"Has any doctor recommended to you that it would be a good
idea to start putting on weight?

My first thought, and remember I've read only a little about
ALS and only 101-level stuff, would be that weight gain
would either accomplish nothing or even make things worse
for you."

Here is my response:

I am trying to put on muscle, since my muscles are atrophying. I have an abnormally low percentage of body fat, so I want to attain a normal level of body fat in order that my metabolism does not digest muscle when I am hungry. Weight gain, for most Americans, is inadvisable. In my case it is what I want to do and what I intend to do, regardless of what any doctor says. Please do not be offended when I type this in all caps. I am not shouting at you. I am shouting with ferocity: "IF I DID ONLY WHAT THE DOCTORS TOLD ME TO DO I WOULD BE DEAD IN FOUR YEARS!" The experts know how ALS is supposed to progress, and the progression leaves me dead. So fork them and their opinion about what is "useless" or "makes things worse." They are not the ones who are going to survive through this thing or extend it. I am. Their advice is advice for dead people.

I hope the foregoing doesn't sound too irrational. Rest assured, I do value the advice of doctors and continue to seek it out. But I will not let myself let them circumscribe what I do in order to survive.
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