A Weighty Matter

One of the first things they tell you (over and over again) when you catch ALS is not to lose any weight. They want you to maintain as much of your poundage as possible because once it’s gone, it’s hard to get back. I must have royally pissed them off when I dropped a quick fifteen right out of the gate in the three months between my first and second clinic visits thanks to a no dairy, no wheat, no fruit, no sugar, no carbs, organic meat and vegetable only diet that I was on at the time. Truth be told, I was tippin’ the toledos at about a buck-ninety in those days so the el bees that were lost as a result of spending so much time and money shopping at Whole Paycheck were worth every dire warning and stern reprimand I received.

Once I came to my senses and began eating food for the taste again, my weight plateaued at one seventy-five for the next six month interval. While that was good news in and of itself, it was becoming readily apparent to those around me that I was struggling mightily with feeding myself. Despite my family’s valiant effort to stuff my pie-hole with yummy and carby foodstuffs, I still managed to lose ten pounds by my next clinic visit. This time, in addition to the usual choral arrangement of “Don’t Lose Weight” (sung to the tune of “Three Blind Mice”), they added an extra verse of “Feed Ing Tube” to the already catchy song. We vowed to redouble our efforts at feeding my face and we got the hell outta Dodge for the next four and a half months.

By my next appointment, we at Team ALS Boy felt quite confident that I had not only maintained but actually gained weight. Our optimism eroded the instant we saw the readout on the scale: 152.3. I was down another ten pounds. Despite my protests, there was no recount, no reweigh. I made my concession speech and agreed to get a feeding tube installed at my earliest convenience. They were happy with my decision to go through with the procedure, of course, but I knew in my rather protruding gut that theirs was an ill-gotten victory.

Fast forward five days later to my thrice yearly breathing test at Kaiser. As per usual, protocol dictated a trip to the scale prior to the scheduled examination. Because I was having an impossible time climbing up on the scale under my own power, an alternative method of weight measurement was decided upon. Here are the results:

ALS Boy + power chair ………. 535 lbs

—— MINUS ——

power chair by itself ………….. 372 lbs

—— EQUALS ——

ALS Boy & gut by themselves .. 163 lbs

Either I gained ten pounds in 120 hours or I should have pushed harder for a recount in the clinic that day. Now that I have a modicum of vindication weight-wise, I still want to get the feeding tube. I have big plans for that thing; just don’t tell Fehmeen.

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