You remember the ice bucket challenge? That one period of time when you would open up your social media feeds and invariably end up scrolling for 15 minutes straight though posts from friends and friends of friends and friends of friends of friends dumping buckets of ice cold water over their heads.

It was part social cause and part internet fad, the kind of thing that had the hopeful optimists amongst us excited to partake in a trend for good, and also the kind of thing that had the more jaded amongst us feeling cynical about what they saw as a clout validation affair.

Sometimes, people can hold conflicting views in their hearts. In this case, I’m one of those people.

See, as is labelled clear in its name, social media is social. You can’t take the clout-chasing out of it. It’s foundationally built around making us want—and eventually making our brains habitually itch for—validation from our peers. I say this not as someone who is above it all, but as someone who was (and, if I’m being honest: still am) susceptible to the brain-itch these platforms manufacture.

So, while the top-level part of my brain might’ve been all “yeah this is amazing it’s for a great cause”, buried deep inside that naively-optimistic brain of mine was a set of neurons re-wired around the structures of social media.

And that part of my brain was making me feel a little bit worried that I wasn’t going to get tagged in the challenge.

See: you can’t get tagged if you’re not close enough friends with people, right? And if you don’t get tagged, peopl see that you don’t get tagged, and then they might infer that you don’t have close friends. Social horror.

It kind of becomes a dancing monkey show where you end up wanting to be tagged because it’ll indicate, both to you and to the rest of your social circle, that someone cares enough about you to pass this challenge forward.

The sweet, sweet hit of social validation was amazing when I eventually was tagged. The friend who tagged me went the extra mile, sitting in a tub full of ice water, getting more ice water dunked onto him. I made a video in the garden, dumping a bucket of ice over myself, happy to be tagged. Classical, true to the format. Conservative, in comparison to my friend’s video. I thought it’d be tacky to revel too much in the spectacle. “This is about a good cause,” I’d remind myself.

sometimes cringy, sincere things are still good.

It’s a little silly in retrospect — looking back through our post-pandemic eyes, it feels like Gal Gadot’s Imagine video with all her celebrity friends. A bit performative, a bit unimpactful, a bit meaningless.

While it does feel that way, it’s not necessarily true — in a big surprise to me, it did actually lead to concrete good. The ALS Association directly credited the ice bucket challenge with accelerating ALS research.

“Five years after the Ice Bucket Challenge soaked the world, the pace of discovery has increased tremendously, bringing ALS researchers closer than they have ever been to real breakthroughs in diagnosing, treating, and eventually curing this disease,” said Calaneet Balas, president and CEO of The ALS Association.

I remember reading this and feeling good about it. We were far enough removed from the event that the internet had grown into its anti-cringe era (contrasted to our current post-cringe tipping point) and the news was a bit of a sincerity check; sometimes cringy, sincere things are still good.

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ALS is a motor neurone disease (MND), where a person’s body stops listening to their brain. It normally begins in some extremity, a hand or a foot, which starts to feel not-quite-right. The doctors will say it’s stress, or a pinched nerve, or a lingering residual effect from a fracture you had a few years ago. “It’ll go away soon.”

When it doesn’t, then they’ll start to realise you’re in trouble. It’s not easy to diagnose it, because it’s normally diagnosed via elimination — they cross off all other possibilities, and then the only one left is MND.

In more grounded terms — you lose the ability to hold things, to stand up, to go to the toilet, to eat, to move by yourself. The eventual state you’re in is, to most people, a living nightmare.

That’s how it was with my dad. He’d been experiencing a weak arm and poor fine motor control in one of his hands for a few months. His doctors chalked it up to trigger finger. Then, when that didn’t pan out, it was a pinched nerve. It took one follow-up with a neurologist who concluded that “there’s no way a pinched nerve can do this,” and then a few days later, the diagnosis was final: MND.

MND is a degenerative illness. As it progresses, it gets a lot more serious than the initial symptoms. People lose their ability to balance, the start to rely on canes, then walkers, then wheelchairs. Some people start to have trouble talking or swallowing. Eventually, you lose all control of your motor functions.

In more grounded terms — you lose the ability to hold things, to stand up, to go to the toilet, to eat, to move by yourself. The eventual state you’re in is, to most people, a living nightmare. It’s a disease that ends, ultimately, in death.

My dad sat me and my sister down one in the final week of 2022. He’d called us both and asked us to come over for dinner — “just you two, just the family.” That was when I figured something was wrong. My sister and me would bring our partners along to family dinners all the time. If they weren’t invited, we were going to be talking about something serious and personal.

With something as big as this, of course, came our questions:

Q: What’s there to be done?
A: The doctor said there are medications that can slow the disease, but that’s all they’ll do. Slow it.

Q: Are you going to take the meds?
A: I don’t think it’s worth it. They’re expensive, and they also aren’t guaranteed to slow it down too much. One version, from Japan, requires you to be hospitalised for almost 2 weeks every month, so they can IV drip the meds into your body. I don’t want that.

Q: How do you feel about all this?
A: It’s difficult, but I’m taking it one day at a time.

Q: Did the doctor say anything about how much time we have?
A: They don’t know. It could be anywhere between less than a year to ten years.

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I don’t know if helplessness is really 100% accurate to describe how I feel.

I think back to how it felt doing the Ice Bucket Challenge, how well-intentioned, how naively-optimistic, how vain it was, and then I think about the results, that something which was all of those things—both negative and positive—actually made a difference.

At the same time, I’m woefully aware that whilst it did help advance research in real, concrete ways, we’re not in the point of time where those advances have trickled down. We’re still helpless to the reality of our scientific progression and of the way things just… are. It gave us a little bit of hope, sure, but hope doesn’t always conquer reality.

The reality is: we know more about this disease than we did before, but we are still far from a cure. We’ve developed medicines that can help, but they’re not guaranteed to. And while those medicines exist, they’re not feasible for most people.

I like to think of us as living in the most advanced era of human civilisation we’ve ever been in. I’m typing this on a tiny tablet that has instantaneous access to all the information in the world. I can reach my friends and family within seconds if I want to hear their voices. I can step outside, and get on a bus to a light rail transport system, which will ferry me across the city. We can do so much. But we can’t conquer this disease yet.

On some day it’s so easy to spiral, to resent the world we live in. There’s that layer of frustration that we’re not where we need to be, and not advancing fast enough to help everyone. There’s cancer. MND. Alzheimer’s. All incurable diseases that are just out of our control.

Getting angry and frustrated at the world is an easy way to channel my complicated and intense feelings somewhere, but my anger and frustration won’t change anything.

Then, the things that are within our control too. Healthcare systems. Inequality. Inequity. Why do we allow certain medicines to be so expensive, so inaccessible? Why haven’t we done anything about the things that we can change?

My dad was active – he walked, he cycled. He went on holidays with his friends. Now, he struggles to move his arms and legs. Balance has become an issue. Fine motor control in his hands is a non-starter now. It’s difficult to see him struggling. And that’s for me, for a person who’s witnessing this. It’s orders of magnitude more difficult to be the one who’s actually struggling.

The other day, after a day out with my girlfriend, the thought that he likely won’t get to see me marry crossed my mind. I thought of all the other things he won’t get to do — the holidays he won’t be able to go on, the hobbies he won’t be able to do again, the major life events he won’t get to see. But I can’t change any of that. Getting angry and frustrated at the world is an easy way to channel my complicated and intense feelings somewhere, but my anger and frustration won’t change anything.

I can’t overthrow global capitalism. I can’t reform the global healthcare industry. I can’t snap my fingers and make it okay again. As sad as it makes me, there are only a few things I can do — like be there for him as much as possible. Spend time with him. Feed him lunch when he’s struggling to do it himself. Watch TV with him. Talk with him. Help him do the things he can’t do any more.

In some ways, a part of me feels like I’m doing the Ice Bucket Challenge again. Doing something that helps but not as fast as I want it to, and not as concretely as I want it to. I have to force myself to clear all of that out, and look at everything again. I can’t help the way I want to, but the help I give is still help, and in those rare moments it feels like enough.

In these horrific, unimaginable situations nothing will ever really feel like it’s enough, but it has to be enough.