OK, so everyone is making cute little videos, dumping buckets of ice water on themselves, to raise awareness of ALS. Personally, I'd rather these people just make a donation to a worthy cause and ask their friends to do the same...but hey, I guess whatever works.
But just what the hell is ALS (some of you may be asking)? First off, "Amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig's Disease (motor neuron disease to my friends overseas) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed." That is a direct quote from the ALS Association's web site (www.alsa.org). Secondly, ALS is one of the few things on this planet that terrifies me.
I've long joked that my only fear is quicksand (it was when I was a kid, not so much now) but the reality is this: I am scared shitless of ever being diagnosed with ALS.
We had a distant cousin who had it. Sharon was a gorgeous gal, with a loving husband, 3 kids, and everything to look forward to. One day, while changing her youngest's diaper, she couldn't get her fingers to work the safety pin (yep, we're going back a ways). She felt FINE, but just couldn't get it to work. Over the next few weeks, things like this kept happening, so she went to see her doctor. Tests were done, and finally a diagnosis of ALS (Lou Gehrig's) was made. This was the 1970s and essentially, this young, beautiful, vibrant woman had been given a slow death sentence.
As one can imagine, a disorder like this doesn't only affect the patient. It affects the entire family. Sharon's oldest, Kimmy, was about 10 or 11 at the time. Over the next couple of years, she had to take on more of her mother's duties at home because Sharon could just no longer do them. That meant raising her younger siblings, as well as helping to take care of her wheelchair-bound, and later bedridden, mother. It was too much for Kimmy. She became distant with the family and seemed, rightly, pissed off. I haven't heard from her since her mother passed, and that was a long time ago. I hope she's OK.
But Sharon, she was a trouper. She fought hard til the end. It was heartbreaking to see this disorder tear her down, bit by bit. She just got weaker and weaker with each passing day. She had no muscle tone or control left at all. She eventually couldn't even breathe on her own, and shortly after that, she died.
The worst part? Her mind was still fully intact. She had become a prisoner in her own body. That's what terrifies me so much about ALS.
To the best of my knowledge, there is no known cause of ALS, and it's only hereditary in a very small percentage of cases. But it's still an awful way to go...and we all know that the only way to end it is through research. That costs money. Sure, the ice water challenge makes for a cute little video, good for a laugh I suppose, but I would, personally, rather see the folks making these videos just send a donation instead. Hey, times are tough. I get it. I'm so broke people should be writing country and blues songs about me! But if you have the money for a video camera or a really nice cell phone, you can probably afford to send a buck or two. There's a link on the www.alsa.org site where you can make a donation.
I won't challenge you to. I'll just ask.
