Chapter 20: Weight

5FEB3E21-D8E6-40DB-ACC5-D7DEC1E08167From the List Of ALS Ironies

A casual observer wonders what’s going on with me:

  •       Why is Howard absent from work so often?
  •       Why is he parking in that handicapped space?
  •       Why the slow walk?

…and eventually it will be:

  •       Why don’t his fingers work?
  •       What’s Howard doing in a wheelchair?
  •       What’s with the slurred speech?

To see me is to NOT understand. ‘But you look so great!’ people say, when I’ve told them. After all, I’ve lost 50 pounds and, you know, skinny is good, skinny is healthy. Right? The fact that much of the lost weight is muscle mass isn’t exactly something that is apparent at a glance.

Though my body weight had been consistently stable and just about medical-textbook-perfect for the first 40 years of my life, something about turning 40 must have freaked me the fuck out, because right about that time it became nearly impossible to maintain any control over my body fat percentage. Oh, I never approached obesity, but the pounds would mount up, predominantly in the love handle region and in a generalized flabby abdomen, like a 6- or 8-pack of blubber, as opposed to the firm, rounded, bulging, pregnancy-like beer-belly that I actually, at one point, would have MUCH preferred. Somehow men holding their weight in this manner seemed to successfully pull off parading around shirtless with some kind of bulletproof dignity.

By The Numbers (in pounds)

185        High School, ridiculously fit, still a varsity athlete despite discovery of and deep-dive into Rock ‘n’ Roll, alcohol, and marijuana.

225        Peak midlife bloat, 36” waist (32” and 34” pants and shorts buried in a drawer out of some kind of irrepressible but clearly ineffective hope of an eventual reduction), numerous diet and exercise regimens tried and failed, oh but the craft beer, pizza/pasta, and the clandestine Rocket Donut fritters, chocolate chip cookies, and brownies were just so fucking delicious!

150        As of this writing, despite absolutely no exercise of any kind for the past two years (rendered impossible due to diagnosis), or dieting (firmly discouraged given the diagnosis), precipitated by muscle atrophy, the loss of muscle means the body asks for less food to maintain, appetite decreases, metabolism paradoxically increases, except, maddeningly, the flabby abdomen remains.

Conclusion: I absolutely do NOT recommend ALS as a diet regimen!


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