Thoughts about the ALS ice bucket challenge

I don’t like it.

I think it’s annoying and kind of silly.

Is it over yet?

First I felt bad for disliking the ALS ice bucket challenge because I thought an ALS patient had initiated it. And shouldn’t I support my fellow ALS patients? But then I read this article about how it started as just a dare, then donations to charities were included and then the ALS idea took over.  And I’m pretty sure that’s true because I remember reading this article in the Tagesspiegel (reputable German newspaper) a few weeks ago about a local bowling club doing a cold water challenge with no mention of ALS and they used an excavator which tipped over, killing one of the participants. And that’s a trend I’m worried about: people trying to outdo one another using more water, bigger blocks of ice… compromising their safety just to get more likes or YouTube clicks. So please don’t do that.

But even if this thing was started by an ALS patient, I still wouldn’t like it.
And here is why:

First of all: What does a bucket full of ice water have to do with ALS? That seems so random.

And: awareness
In the half of the videos I’ve seen (I didn’t watch very many) the people didn’t even mention ALS. And nobody gave any information about this disease.  So that’s not exactly spreading awareness.
The other thing is… What’s the point of awareness? I mean being aware of diseases like HIV/AIDS is super-important for obvious reasons but what’s the point of being aware of a disease that you can’t prevent? I don’t get it. I think most people are somewhat aware that there are a number of horrifying diseases out there that you can only hope not to get. And I think that’s enough. No need to get into the gory details of every single one of them.

And to me the concepts of health and disease are very individual. So I’d much rather tell someone about my personal ALS story than dealing with people who have a preconceived notion about how devastating and terrible and hopeless this disease is.

And: money
So yes, it’s a good thing that heaps of money are being donated for ALS research. But… what can I say, I have very little faith in conventional medicine and their evidence-based science and research. Actually, I was going to write “no faith whatsoever” but I didn’t want to be negative. And if they do come up with something, I will gladly take it. But I’m not holding my breath. In the meantime, I don’t feel supported by this system. All these clinical trials and double-blind studies in my opinion fail to take into account that the patients are human beings, individuals. And I don’t think it can work that way.
And there’s a saying in Germany that you can’t trust any research study you didn’t forge yourself…

So, there’s all that but the real reason why I dislike the ALS ice bucket challenge so much is way more personal and occurred to me as I was writing this (and rewriting and thinking about it…). It’s about how it makes me feel as an ALS patient: disempowered, dependent on donations and research. And I resent that. And I know that’s not a reason to stop this campaign and that many (maybe most) ALS patients are grateful for the attention and donations, and that’s wonderful.
But… The thing is: I believe in me. Which is good because not even the most optimistic doctor or researcher would think that they can find a cure “in time” for me. So I believe in me. And I believe that I can find a way to support my body, mind and spirit just right to heal, to stop the progress of this disease and recover. And I realize that this may sound like I’m naïve, delusional or in denial. But whatever. It’s what I believe and what keeps me going. And now there’s this challenge and it’s everywhere and it’s a fundraising campaign so they’re more like: “Devastating disease! No cure! Everybody dies! Only research can save us!”
And that doesn’t feel so good. Makes me wish people would stop throwing ice water all over the place and just let me believe in myself in peace and quiet.

So… Is it over yet?