There’s not a lot of good in a diagnosis of ALS. Probably there’s NO good in it, except possibly finding out the real character of the people around you. Which does not always amount to a good thing. You learn things you didn’t want to know. Sometimes people show unexpected grace, sometimes they display amazingly cold-hearted selfishness. And sometimes you find out that someone you didn’t pay much attention to is actually an amazing person, and now you don’t really have a lot of time to get to know them properly.
I’m saying it sucks.
I’m facing a lot of challenges. The worst is yet to come, I’m certain; I still have most of my functionality, I have a good job, everyone’s being really supportive. No matter what I may be dealing with right now, it will all pale in comparison to the day I’m finally confined for good in to a chair. When I need help to get dressed. When I can’t eat. When I eventually stop breathing and die.
But for now? The worst part, EASILY the worst part, is having to tell people what’s happening.
I’m a stupidly empathetic person. I don’t know how to simply be sympathetic. “This must suck for you” may come out of my mouth, but my heart is breaking for you. I don’t know how to not do that. I don’t know how to just observe someone’s pain or anger or fear. I’ve never, ever been good at this. I have always reacted more viscerally to other people’s drama than my own. I will let myself be stepped all over, but God help you if you fuck with a friend of mine. There is no such thing as casual observation in my world. All of the stupid sappy videos on the internet – ALL OF THEM – hit me square in the feels. I can’t watch movies that contain a lot of suffering, they freak me out.
I don’t know how to tell someone I’m going to die without it destroying me on their behalf.
It’s really fucking stupid. I mean – it’s happening to ME. This is MY life cut short, but I find myself apologizing profusely when people find out, and I’m very quick to reassure them that I’m okay. Even though I’m not.
I told a coworker today.
He got on the elevator with me this morning, just the two of us, up three floors. This guy and I are not close coworkers, he’s a total asshole, but I kind of respect him for that. He’s blunt. Very straight forward. When I had a problem with another coworker, he was one of my staunchest allies because he calls bullshit when he sees it. I admire his ability to stand up for himself like that.
He wished me a good morning, and asked if I’d ever found a solution to the back/hip/knee thing that has been plaguing me.
“Uh. Yes, actually,” I told him. “It’s uh…ALS. Lou Gehrig’s.”
And I watched the reality hit him and take the light out of his eyes for a split second. He’s probably the first person I’ve told that immediately understood exactly what this meant. “Oh my god, I’m so sorry.”
I smiled at him, “Thank you. I’m doing okay, though. I’m going to keep working as long as I can. I’ve got lots of time.”
He asked what the prognosis was.
“Typically three to five years,” I said, “but my progression is really, really slow. I’ve got time.”
It felt like I was stabbing him. “I’m so sorry.”
And because he was shaken, and because this was terrible news to him, I felt like I had to cheer him up. “I’m doing okay though! I’m happy to have an answer! I’m doing fine!”
He put his mouth in a smile shape.
“…I’m sorry for bumming you out,” I told him quietly.
“NO,” he said quickly, “no no no. You didn’t. I’m sorry this happened.” His mind was elsewhere.
He and I didn’t say much else as we got off the elevators and walked to our cubes. I sat here at my desk awhile, my brain going a million miles an hour, wondering how the hell I could have said that different, how do I frame that so that it’s not ….
…so that it’s not exactly what it is, which is a coworker/friend/family member/acquaintance telling you “I have a terminal disease”.
It is likely only so touchy and raw right now because the diagnosis is still so new to me. I can’t expect someone to blithely accept something like this when *I* haven’t even dealt with it yet. And there’s no real comfort I can supply. “It’s okay” is a lie. It isn’t. And I’m not yet okay with it not being okay.
I’m saying it sucks.
I don’t have the tools in my Cabinet of Social Awkwardness to deal with this properly. If I’m going to be so goddamned empathetic, I feel like I should at least ALSO be intuitive enough to know how to tell people something like this in a way that’s not going to be shitty.
“Do you like baseball?”
“Hey, heard of Stephen Hawking? Turns out we have a lot in common!”
“Good news! It’s NOT cancer!”
A friend with a sense of humor just as fucked up as mine suggested, “Oh, it’s not cancer! And it’s not heavy metal poisoning! They said that I don’t have to worry about either of those; because those take YEARS to kill you!”
…yeah I don’t think that’d go over so well.
For me? I prefer to be told straight up, with a matter of fact idea of what to expect. It’s how I was told of my diagnosis to begin with, and I couldn’t have asked for better. But not everyone can deal with that. This is why I tried to tell people all along that something like this was a possibility – I’d rather have that be mulling around in the back of their head for awhile, and then confirm their worst fear, than tell them “I have ALS, I’ve got a handful of years to live” and have them freak the fuck out all over me. Because THAT is what makes me freak out. Not my own diagnosis, but the way people react to it.
THAT, so far, has been the hardest part.
I’m sure in a year’s time I’ll look back on this and laugh myself sick that THIS is what I was agonizing over.
But for now, I am hurting those I love and I’m powerless to stop it.
And I hate it.
I’m saying it sucks.