On Monday evening I was walking my dog when I saw a woman dump a bucket of ice water on her head. Well, I had to ask. She told me about the Ice Bucket Challenge and I was intrigued. My mother died of ALS so it’s a cause that’s close to home, and this seemed like a cool way to raise awareness without having to talk much about the reality of the disease. I don’t talk much about the impact of ALS on my mother. I try not to think much about it at all, to be honest.
But the Ice Bucket Challenge picked up steam really fast and before I was able to buy the necessary bag of ice everyone was doing it and now it feels like a game, a trend. Now it feels like participating is just jumping on the bandwagon and I just can’t do it.
You want awareness? Here’s awareness.
ALS – Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. This is more commonly known as Lou Gehrig’s Disease.
My mother diagnosed with ALS in December of 1987. She died less than 18 months later on March 1, 1989. Within a year of diagnosis she lost her ability to perform the simplest tasks, like putting on her own eyeglasses. She was legally blind most of her life, so not being able to put on her glasses was terrible for her. She also lost the ability to speak clearly to direct us to make the minor adjustments to make her glasses comfortable. I use this example because it is one of my clearest memories of coping with her and this disease. I put her glasses on, but something was not right. All I could tell was that she wasn’t happy, but I couldn’t figure out how to fix it.
ALS is probably the worst diagnosis I can imagine. There is no cure and there are few treatments. Life expectancy after diagnosis is less than 10 years, and that life is not pleasant. It slowly robs you of your dignity. It locks you inside a useless body. You can see and hear and feel, but you can’t do anything about what you see, hear, and feel. Got an itch? Smell something burning? Too many blankets (or too few)? The TV too loud, or not loud enough? Hungry? Thirsty?
If you really want to raise awareness, try spending a day in your bed at the mercy of a caregiver. You can even pick the caregiver. But you can’t speak. You can make sounds, but no words. Also, you can not get out of bed without help. You can have minimal movement of your limbs, but you aren’t strong enough to use a remote control or lift your hands all the way to your face.
Once you get a taste of what it’s like to live, if you can call it that, with ALS, I bet you’ll be much more invested in pushing for research into a cure.