We’ve all seen the videos, laughed at some of them, loved some of them (Nathan Fillion and Tom Hiddleston, oh my!) and then gradually become irritated with seeing them posted and reposted. I hope that this has raised some money for the ALS Association as well as made people a bit more informed about what the disease actually does…but I don’t think people really understand what ALS is all about.
My mother died of ALS. To be completely accurate, she actually died from an infected gallbladder in hospital while doctors debated the best way to put someone under anaesthesia whose ability to breathe was already so compromised. But in the end, ALS was the real cause.
In the beginning it affected her throat, and her doctor at first theorised that she may have had a small stroke that affected the muscles in that area. As it progressed, she found herself unable to speak, swallow and at the end breathe. She had a keyboard that would speak for her but she hated using it. The woman who had been very bright, friendly and a force for good in her community, her family and her church, saw her world shrink to the confines of her house. If you are unable to communicate, if no one can understand the sounds that you make, it is both humiliating for the sick person and embarrassing for the people that she is trying to speak to.
Imagine being gradually locked into your body, a prisoner of unresponsive flesh. Still smart, still bright, still full of love and things that you want to say and do, but locked in.
I’ll tell you a personal story, a small one, to illustrate what an early stage of ALS is actually like: I was visiting from the UK and had gone with my mother to pick up lunch for everyone from Taco Bell – something that millions of people do every day without it becoming a personal ordeal. I was really struggling with understanding her speech, as my infrequent visits from abroad meant that I was much less used to translating what she was trying to say than the rest of the family.
I ordered what I needed to, and turned to my mother to ask what she wanted. As it was lunchtime, the restaurant was packed and people were waiting behind us. She said something, and I couldn’t understand her. She tried again and again, and as much as I desperately wanted to understand what she wanted, it wouldn’t come together in words. The person behind the counter waited politely, the people behind us waited politely, and my mother kept trying. Her eyes were bright with tears and her face was flushed, but she stood there and kept saying whatever she was trying to say. You have to understand that there are things which run deep in our family (aside from nasty tempers): pride, a stubborn streak a mile wide. and politeness. She was too stubborn to use her keyboard. I didn’t want to insult her by just ordering something for her, or asking her to point, so we remained stalemated in hell. (Yeah, yeah, Taco Hell, ha ha.) I have no idea how we finally escaped with our bags of food, but that little episode seemed to take forever.
And that is an experience from the early stages, before it really gets nasty.
So it’s all well and good to post videos of yourself or your friends having buckets of ice water thrown on them. Hopefully you’ll also throw a few bucks at the ALS Association. Just remember that it benefits real people, people who are being reduced to minds locked in failing clay. It’s an evil disease and it can strike anyone.