Thursday, August 28, 2014

ICE-BUCKET CHALLENGE? ME? I DON'T THINK SO, BUT...


PLEASE DON'T EVEN THINK ABOUT bad-mouthing the "ice bucket challenge" to me. It may seem like a silly thing, but it's raising bucket-loads of money for research into and treatment of ALS, aka "Lou Gehrig's Disease." More importantly, it's raising AWARENESS of this awful, awful disease that I'm willing to bet most of us had not given much thought to.

For my first 70 years of life, I'd never seen anyone with that disease, and certainly didn't know anybody with it. Sure, I'd skimmed a couple of articles about Lou Gehrig, and I knew about Stephen Hawking, the scientific genius who's been confined to some kind of motorized wheelchair contraption for decades --- because of ALS, I learned fairly recently. That's about it.

Then, within a one-year period, two (!) men I knew were diagnosed with this relatively rare disease. Both were family men, extremely intelligent, middle-aged, very active. One was comfortably middle class,a former banker married to another banker; the other one was very prosperous, with a Rolls-Royce, a classic Jag, and a Bentley which he was restoring, who lived in a commodious home in a tony area of Los Angeles. Both were very active members of my church, which is where I knew them.

Both were pillars of their respective communities, and very independent, self-reliant men. I  remember when one of them started complaining about his increasing fatigue and other things which I was also experiencing --- but I was OLD, and he was not. The other gentleman was even more private than the first, but held a number of positions of responsibility in our parish and diocese, so I usually saw him at least a couple of times a month --- except for a two- or three-month period when he seemed to me to be MIA. When I finally did see him again, I was shocked almost beyond words; he'd lost a lot of weight, and his voice was very hoarse and labored. I was sure he had cancer.

By the time the second man became ill, the first was already being treated for ALS, and he was almost completely paralyzed, totally dependent on caregivers. Remember, this guy had been a very active family man, but was now confined, paralyzed, to a motorized gurney contraption. The second man --- the wealthy financial advisor whom we all thought had cancer --- was diagnosed, not with cancer but with the even worse ALS, shortly after the first one had begun treatment. The condition of the second man declined markedly and rapidly, to the point where he had to shuffle from place to place in his home (couldn't drive anymore, or even walk around his neighborhood), and eventually his speech moved from being a hard-to-decipher mumble to being just plain unintelligible.

A few weeks ago, the man who'd been diagnosed second passed away. He died at home, suddenly one morning. The first man is still holding on, but is completely, totally dependent on others, almost completely paralyzed.

I have to say again, these were two of the most robust, active, independent men I have ever known. But in each case, as their ALS advanced, they became progressively more dependent on others. After a few weeks, in each case, they required constant, 24/7 care. These men had been so strong and independent, but were now weak, paralyzed, and totally dependent on others. And the worst aspect of it all, as far as I'm concerned: As is usually the case with ALS patients, their minds stayed sharp throughout the ordeal, so they were very aware of the dramatic reversal of their circumstances. Clear-headed; aware. I think I'd much rather have severe dementia, and just not be aware of how miserable I was.

But that's ALS. That's the condition which I used to give very little thought to, which I think a lot about now. That's the disease which the inane "ice-bucket challenges" try to raise money to understand and combat. Yes, those "challenges" are hokey and silly, but they're turning a spotlight on this unspeakably horrible disease, and whatever does that is quite okay with me!