Do you know what actually happens if you have ALS?
In the beginning, it’ll feel like old age—unless you’re 27, like Pete Frates was when he was diagnosed. Something will feel different, like you had slept in a bed the shape of a trapezoid the night before and that’s why your hands feel sluggish. It’ll feel like sore fingers; but you’ll question if it’s even possible for fingers to get sore. Then you’ll realize that soreness is actually weakness. You’ll go to open a door and despite how much your brain protests—“You can do this!—you won’t be able to. Then, holding a knife and fork will become a chore. It’ll make you avoid ordering steak—yes, steak. You’ll start making fashion choices based on which clothes have fewer buckles and buttons. You’ll run out of breath shampooing your hair.
When the disease is in its early stages and has only claimed your fine motor skills, you won’t be out enjoying life or checking off a—forgive me—bucket list. No, you’ll be in the hospital, where neurologists will shock you with electricity and poke you with needles. Since ALS is a disease with no known cause, doctors have to exclude every other possibility in order to diagnose it. Even with our advanced medical system, doctors can’t just check your blood for ALS. No, they’ll run so many tests you’ll be convinced the doctors are trying to clone you. It’ll be exhausting, frustrating, and ultimately heartbreaking as you get your hopes up for any other disease than this one.
Meanwhile, you’ll watch your muscles concave and disappear, completely adamant that you once knew how to use them but also like you never even learned in the first place. The disease will spread, each day claiming a little bit more of your ability to walk, speak, chew, and swallow until you reach the point of complete paralysis. Somewhere in the span of three to five years, the disease will spread to the lungs and breathing on your own won’t be an option anymore.
This shitty disease only affects about two to five people in every 100,000, but it’s equal parts a blessing and a curse that it’s so rare. Only a few have to suffer, which means that it’s largely ignored by big pharmaceutical companies. The average drug costs $5 billion from conception to initial tests on lab mice to the WebMD-driven retail market, so funding such a rare disease isn’t exactly the best return on investment. Federal funding is low—down from $59 million in 2010 to $40 million in 2014. Even the number of charities supporting ALS research is a decimal point compared to the number of charities for, say, cancer.
If the definition of depression is hopelessness, then this disease embodies it perfectly. Before July 29, when the ice bucket challenge went viral, ALS wasn’t something people spoke about very often. It was that disease that claimed a friend’s uncle’s life, fuzzy and disconnected—not something that is prominently displayed in one of the world’s most visited websites. After the challenge, the ALS Association has raised $41.8M compared to $2.1M in the same span of time as last year. The cause even spread across the Atlantic and reached the UK. At long last, ALS patients find themselves in the spotlight.
ALS runs in Anthony Carbajal's family. He was diagnosed six months ago, at 26, with ALS.
Enter the douche ex machina here to ruin the day: the self-righteous friend complaining via Facebook about people not following the rules, the person who texts you a meme about African children without water, or the journalist/media commentator who needs to find a way to call out "hashtag activism." We took something that by all accounts is a success and found a way to make it terrible.
The worst people aren’t the hashtag activists—they’re the ones sitting behind their computers, typing angry prose of disapproval. You know the type, the ones who point out how unrealistic something is when they’re watching a Seth Rogen movie. We know the ALS ice bucket challenge isn’t perfect, just like we know that Seth Rogen couldn’t possibly launch into the ceiling if he sat on an airbag. But that doesn’t mean we need to frantically wave our hands in the air about how not everyone donated, that we should’ve donated the money we spent on ice instead, or that we’re “wasting” buckets of water on our heads.
Yes, people are spending money on ice to dump over their head, but that’s an element of fundraising, like making team t-shirts for a charity or bringing cookies to a bake sale. All the cynics who want people to donate in humility and not post it on our social media feeds completely overlook the fundamental reality that humans are social animals. In the hierarchy of needs, we search for community and fulfill the urge to belong, so donating without dumping buckets of water on our heads disconnects us from a cause. It’s about being a part of something.
The hashtag activists actually create that community. Since when did fighting for something—whether a cure for a disease or gay rights—mean that you needed permission to sit with the cool kids at lunch? What's the harm of having them there, even the ones who ended up there on accident, the people dumping buckets of iced water on their heads with zero connection to the cause? They are the people who end up at a bar where the proceeds go to charity, and they’re only drinking for fun, but who the fuck are you to kick them out of the party? They’re pumping up the crowds, having a fabulous time, and building momentum. Or are you that desperate for your Facebook feed to go back to engagement announcements and mediocre attempts at food photography?
Keep dumping buckets of iced water over your head and I’ll keep “liking” it. I know that the ice bucket challenge is one of the few things that's given me hope since I got diagnosed with early ALS six weeks ago at age 29.