The ALS Ice Bucket Challenge

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.



10 thoughts on “The ALS Ice Bucket Challenge”

  1. I keep seeing snippets in the news about celebs and ice water but I haven’t read any more to find out what it’s all about and I feel bad about that. Knowing that it’s for something so serious. I had no idea what ALS was until I read this, Ravv. I’m so sorry about your mother. It must have been incredibly hard for you and your family. Your photo is absolutely beautiful. I’m so sorry you’ve had to go through all the hardship of such a horrendous illness. :( xxx

  2. Thanks, Suzy! I wasn’t going to post this until I watched the video in the article that I linked above. It made me cry. It’s all “Ha, ha, look at so-and-so get icy water thrown at him” until you realise what a really shit disease it is. And as he said, too unprofitable to put any research money into. :(

  3. *hugs you* This is why I generally tend to dislike these viral campaigns.. Sure, they have a good heart somewhere, and money gets raised, in the beginning they’re fantastic.. but overall, the message is forgotten and it becomes more of a selfish act for attention than anything really good and I hate that. People, I can guarantee, will be doing the ALS Challenge with no real idea of what it is. I hate that. :(

  4. So agree, Hannah! I also think that a lot of people do it because they’ve seen celebs doing it and they don’t donate at all. The only person with ALS/MND that they will have heard of is Stephen Hawking, and quite honestly as devastating as it was for him, he has money. It’s so much worse for people who don’t.

  5. And he’s been VERY lucky.. but you still hear stories about how he wanted to end his life because of what he has to live with, and that’s worth remembering. My nanny died of MND.. I’m really quite thankful I never saw her after her diagnosis in a way, though I did know a chap from the charity shop I used to volunteer in who had it. He ended up with one of those motor-scooters, it was brilliant. He was always so lovely. :)

    It’s the “locked in” part of this illness that disturbs me the most.. at least folk in a vegetative state aren’t aware of what’s happened to them. Not that it’s good, just.. kinder.

  6. Sorry about your Nanny – I know you miss her, you’ve mentioned her before. Yes, it’s the locked in part that is most horrifying to me. The mind is all there, you are all there…but you’re shut inside. Awful thought!

  7. Ah this is my mum’s mum. The one you’ve heard me talk about is my dad’s mum, she has Parkinson’s. :) The one who died of MND I hadn’t seen in years, to be honest, she moved away when I was still a kid.

  8. Oh, Ravven, I’m so sorry your mother (and your family) went through this. I lost a sister to Alzheimer’s (hers was early-onset)–and now my mother has it as well. I’m not sure which would be worse, having an intact mind in a crumbling body or a healthy body with a failing mind. Each seems like its own version of hell.

  9. Thank you Stephanie, and so sorry about your sister and mother. I’m not sure which would be worse, either – but the thought of either one terrifies me!

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