April Fool

I’ve always, always hated April Fool’s Day.

I’ve only ever been – at best – ambivalent towards the holiday. I don’t generally like pranks, because usually what I see aren’t so much as pranks as people being complete dicks to an innocent person. It’s a really mean-spirited holiday. I believe in open communication and trust, and this holiday celebrates being awful to people. The general rule is, “if it’s not at least as funny to the victim, it’s not a prank.”

Three years ago, April fools became something else to me. It became Diagnosis Day. Sadiversary. Three years ago, I sat in a doctors office, and was told I was going to die. Horribly. I had previously joked about having this appointment on this holiday, joking on Facebook that regardless of the results of this appointment, no one was going to believe me. I now tell people that my diagnosis was the un-funniest April fools prank ever.

Three years later, I’m taking stock of everything I thought since then, and everything that has become. I knew that no matter what I thought was going to be the problem, my real troubles were likely to be things that never occurred to me. I was mostly correct. I’m a pretty smart person, and observant, so I saw a lot of my troubles coming. I’ve surprised myself with how well I’ve handled some things I thought would destroy me. The loss of my hands. The death of my 23-year-old cat. And, predictably, some things surprised me by how intensely I reacted to them. Or, as has usually been the case, how little I reacted to them. My first fall. That was kind of a, “well that sucked.” Instead of a nuclear eruption of emotion. Often times a completely excusable meltdown has instead been met with, “yeah, okay, there’s that.”

Tuesday, I had my second semi serious fall. As is mostly usual I can’t even tell you exactly what happened to make me fall. I can tell you that’s a major contributor is that I OUGHT to have been holding onto something, and I wasn’t. That would’ve helped. Instead, I went down like a ton of bricks and somehow twisted my knee. It hurt badly enough that I was nauseous for a moment, and had to lie there a moment to catch my breath. I can tell you exactly how I managed to twist my knee, but I did so. Just so. And so for the last few days, I’ve been having a taste of what it’s like to be immobile. I’m used to being able to walk around my apartment, simply leaning on the walls for support. I couldn’t put any weight on my knee at all. And living alone meant that in order to get to the bathroom, I had to swivel myself onto my Walker and push myself around the apartment with my good leg. It was really…

… Lonely.

I wasn’t expecting that. I was expecting helpless, and frustrating, certainly. But it hasn’t really been the helplessness and being bedridden lately that got under my skin so bad. I’m a very independent person, and will fight to hold my own, on my own, until I am actually dead. It wasn’t really that I wanted help? But it was just as when I’m sick. I just wanted someone else around. Had I had a roommate at the time, I would have completely ignored them. As usual. But sometimes it’s pretty awesome just knowing someone else’s around. Especially when you’re hurt or ill.

Three years ago, I was completely able to stand up out of a chair on my own. Without using my hands, without even thinking about it. And now, when I try to get up off of the toilet I can’t even remember how my legs did that. How my body was able to just… Stand up. How I was able to run up a flight of stairs. It’s not even depressing so much as bizarre to me, that I have completely forgotten how to do simple things I used to do without thought. I expected frustration, anger at my ability to bend over, balanced on one leg, to pick something up off of the floor being taken away from me. But I find myself staring at whatever it is on the floor that is vexing me, baffled at how my body used to Do the Thing. Without will, without thought. Unthinkable.

It’s been three years since I was officially diagnosed. Self-inflicted injuries notwithstanding, I’m still on my feet. This is amazing. A lot of people with ALS would be dead by now. I’m losing the use of my hands, which is why I’ve been using voice dictation to create this post, but I can still do the basics. I can use the toilet by myself. I can go get myself a drink from the fridge, as long as I’m careful carrying it back. I can still pet my cats. For now. My progression is still very, very slow. And I am extraordinarily grateful.

I still hate April Fools’ Day. I can’t really blame the holiday for my diagnosis, or even the timing, because I was given the option to have this appointment on this day. I knew in my gut what this appointment was going to be about, by virtue of having been given the option to move the original appointment closer. I could’ve waited two days. But I already hate the holiday, so why taint any other perfectly good April day with an anniversary such as this?

Regardless of how you feel about the holiday, please treat your fellow humans with respect. Make sure your prank is funny, and not just you being a dick.

Life is enough of a dick as it is.

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