The other day a friend of mine posted her ALS ice bucket challenge and I noticed something about it.
“I was nominated to do the ASL ice bucket challenge by…”
This viral video craze has nothing to do with ALS, it has nothing at all to do with learning about ALS. I’m sure the person who came up with the idea was hoping that the bucket of cold water would act as a deterrent and encourage people to donate out of fear of cold wetness.
Because people have been co-opting the name of ALS to basically throw a world-wide wet t-shirt contest, I thought I’d provide some actual facts about ALS.
Amyotrophic lateral sclerosis (ALS) 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. [x]
I don’t know when I found out my dad had Parkinson’s disease. I don’t think it was a big conversation. It was just a fact from about as far back as I remember; my dad is sick, he has Parkinson’s. There were signs that it wasn’t going to be a very good thing. He started working from home, I caught my mom saying the sentence “Well he isn’t getting better, it’s a degenerative disease after all”. But it was always just sort of a fact; my dad has Parkinson’s, it’s a degenerative disease, he works from home now. Best not to ask too many questions about it. Who has questions?
What I do remember is high school, freshman year biology class.
“… dies of Parkinson’s,” said my crayola lipped science teacher. My hand shot up.
“How does someone die from Parkinson’s?”
“Well, Parkinson’s basically stops your muscles from listening to your brain, and eventually that’ll include the heart and lungs. And if your heart and lungs can’t follow your brains instructions then you die.”
And then the world kept turning. No one in the room knew that my dad had Parkinson’s and no one who knew my dad had Parkinson’s knew about the conversation in that room.
The ALS ice bucket challenge isn’t helping people learn how to detect ALS or giving researchers any new ideas about how to cure it. It’s just clogging up my newsfeed with a lot of people who are too hot.
Some things that would be more constructive than the Ice Bucket challenge:
- Challenging your friends to learn and then repeat back five facts about ALS (or the chronic illness of their choosing) and how to donate while standing on their heads, or holding a barbell in the air, or treading water.
- Challenging your friends to learn enough about the disease of their choosing to hit up their friends for donations. For every person they convince to donate you’ll give them a home baked cookie, a blowjob, or a hot wheels car. Your choice.
I don’t think the ice bucket challenge is the worst fad to hit America since Tab or plastic crucifix jewelry or anything. I just think it’s a missed opportunity to have a useful and potentially meaningful discussion.
And that makes me disappointed.
P.S. Mental health chronic illnesses count too.