The Ice Bucket Challenge was amazing in bringing awareness about ALS to the general public. It’s gotten to the point now where when I say ALS, there might be a reaction, and I don’t have to continue, “..Lou Gehrig’s?” People are starting to know what ALS is. And that’s WONDERFUL.
But we’ve still got a way to go.
I am looking forward to a time when someone asks what’s wrong, I say ALS, and there is complete understanding. Not just “oh that’s pretty bad, isn’t it?” but “Oh, this is terminal, I’m so sorry.” It would spare me so many awkward conversations about treatment prospects and recovery times. There’s no gentle way to say, “There is no treatment. This is a death sentence.” It’s hard to drop that on someone and tell them that you’re okay, honestly, in the next breath. “I’m going to die. But it’s okay.”
It would be so much easier if they understood the implications already so that I can be spared giving people tidings of death with every conversation about my disease. Not just the mortality part, but the whole gradually becoming stuck in a meat shell until I suffocate part. It would spare so much awkwardness. I can’t even imagine someone having one of these superficial conversations with me, learning I have ALS, and then Googling it later and HOLY SWEET MOTHER OF GOD THIS IS AWFUL IF I HAD KNOWN I WOULD HAVE BEEN SO MUCH MORE SYMPATHETIC OH GOD SHE PROBABLY THINKS I’M THE MOST UNFEELING PERSON EVER. (I don’t. I promise.) But the alternative is unlimited conversations like this:
“Hi, how are you?”
“I’m going to die horribly, thanks, but otherwise grand. How are you?”
Okay, so: story time!
I ran into a coworker in the hall a little bit ago. He’s not with my group, but he works on my floor so I see him a lot. Really nice guy, though we got off to a rough start – we met in an argument over who had booked a conference room (I did! And I proved it!) and he was really bitter and snarky at us even though I GAVE him the room and we just found another one. But he had the good grace to make a point of finding me later to apologize and explain that he was really frustrated with getting kicked out of rooms a lot that day because I guess his admin sucked and didn’t actually reserve ANYTHING. But he was sorry he took it out on me. And we’ve been happy acquaintances since.
…Anyway. He stopped me in the hallway and asked me how I was doing. It was a genuine, “How are you?”, instead of the generic “How are you” that you pray to God the other person will just superficially say “Fine! You?” and you both can go about your day. He was actually concerned, and I was a little confused because we hadn’t talked about my disease before – had he seen the spot on the news?
“I’m good,” I answered him honestly. “Doing alright.”
He voiced that he had seen my walking kind of deteriorating and was wondering if I was okay.
“Ah, that. Well, I have ALS.”
There was a little bit of recognition there, and he sympathetically told me, “I’m sorry to hear that.”
“Thank you. But I’m doing okay.”
“So it’s a progressive thing?”
“Yep, someday I’ll be in a wheelchair.” I shrugged.
“Oh. Is it hereditary?”
“Sometimes. Not with me, but 10% of cases. Usually it just comes out of the blue.”
He was sympathetic, nodding.
“But nothing hurts,” I continued. “I’m doing okay. I’ll be working as long as I can.”
We’d reached the end of the hallway where our paths split. He gave me a warm smile and said, “Please let me know if I can help you in any way.” And he meant it.
I was touched. “..Thank you, I will.”
He turned to go, and said in farewell. “Well, I hope you feel better.”
Yeah, awareness has a long way to go.