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.

Saddiversary

*cough* Hi. Um. *taps mic* is this thing still on?

Yeah. Sorry guys. It’s been very nearly a month. I haven’t had much to report, for the most part, and I FREELY admit that I was hiding from everything on April 1st. Diagnosis Day. My second Saddiversary.

Two years ago, I sat in Dr. Goslin’s office and stared at the carpet, nodding slowly, repeating the words, “definitely a motor neuron disease of some kind, and very likely ALS.”

“In a nutshell,” she’d replied.

At the time, my hands were unaffected. I could still stand up without assistance, and walk unaided. I couldn’t stand on my toes, but I could stand on one leg. My breathing was fine, speech was fine. I had periodic muscle twitches, mostly in my thighs, and sometimes harsh cramps in my calves. I could still slowly wiggle my toes, though my mutant ability to wiggle my left pinky toe was gone. I weighed 175 pounds, up from the 160 I’d finally managed to hit when all these troubles started.

I was devastated, of course. No shit, right? But I had a fierce optimism about it all. It didn’t really matter, I knew to my core that I’d be okay; it’s just that OK was going to gain a new definition. Someone else’s broken and busted is someone else’s awesome mobility day. I had amazing people at my back, I had a NAME at last for what was wrong with me,and with that name came a roadmap. As long as I have a name, I can have a loose plan. With good people on my team, and a discovery of a whole organization of people dedicated to help poor bastards like me cope as best as we can for as long as I can, I had this thing in my pocket.

Two years have come and gone, and they’ve taken my ability to stand without assistance. They took my ability to stand on my own without leaning against something. They pretty well chewed up my hands by now. I’m losing the ability to wiggle my fingers independently, which KILLS the joke when I try to make sarcastic air quotes. I no longer type as fast. I no longer fit in my cutest clothes, because I’m now 200 pounds. Still eating and breathing fine, though, so again – the things that will eventually kill me have not yet begun to kill me. They took their toll on my energy levels, which is the second worst part of all of this I think. I can cope with being able to type with difficulty, I can cope with relying on a cane to get around, but doing any of these things just completely WRECK my energy levels for the rest of the day and probably the day after. It’s getting hard to get out of bed both because my energy levels say no, and part because hauling my now 220 pound ass out of the bed is not an easy task. Specially with a cat who just will NOT GET OFF OF YOU but he’s 22 so I have to be super nice and NOT toss him across the room. I fall sometimes, occasionally because I forget I’m not a normal person and can’t multitask walking AND adjusting my backpack. My cats are three obstacle course experts, and they drag their toy obstacles in new configurations every day. To keep me on my toes. Except the little fuckers don’t seem to get that I can no longer stand on my toes, and if I fall, we are ALL gonna regret it.

Those two years have seen some relationship changes, too. Surprisingly, mostly for the better. Amazing people have come out of the woodwork to support me, I hear stories about me that I never would have known, heard the effect I’ve had on people that I never realized. That part’s been awesome. And some people have gone, for many different reasons, mostly that it’s just really fucking HARD to be around someone with a terminal disease. You know the relationship is doomed. It’s difficult to watch someone you care deeply about struggle so much. And THAT is the worst part of having ALS. Watching how it affects those I love.

I watch you watch me struggle, and I feel your helplessness coil off of you in tentacles that hover and sway as you debate coming forward to ask me to let you help. I watch panic burst from your chest like a gunshot wound when you witness me fall, and you bleed in little droplets of ‘what do I do what do I do’ while I assure you that I’m okay, and scan my surroundings for ways to get myself up. You do a little “I wanna step in and help but I don’t know how” cha cha at my side, tentatively reaching down with those useless tentacles, hands offered but of no use to me. “Unless you can deadlift 200 pounds,” I warn, “you’re not going to be any help to me.” I can’t help you help me, you see. It’s not simply a matter of grab my hands and help me to my feet; there are no longer muscles to flex and bend and counter my weight. Getting off the ground is a matter of leverage, I have to find a solid footing and something sturdy and tall like a chair that I can use to wedge my legs into straight lines, and then lift myself off of the chair. My legs are stilts, made of useless skin and fat; the muscles are out back protesting. And so here we are in an incredibly awkward situation in which not only did you have to witness gravity force itself on someone you like, being able to do nothing, but now you have to watch as I humiliate myself by exerting an insane amount of energy to belly up to the chair and lock my legs in position behind me, shakily lifting my body upright, hissing to myself “come the fuck onnnnnnnn just stand up. STAND UP.” and when I get up, swaying and panting,k we are all of us worse for the experience. My humiliation and out of breath sweating will stop, though. You, you never really stop feeling helpless. And I see that knot of internal pressure, maybe it’s rage at the unfairness of the situation, maybe it’s fear that something might happen to you. You have a lot of reasons. Just as I do, watching my friends in situations I can’t control. It’s the worst place to be, and I don’t blame people for realizing they can’t handle it and stop coming around.

Hell, I actually respect you for recognizing your limits and putting your own health and life first. I WANT that for you guys. I appreciate everything you do, and I love you for who you are, and that includes knowing your boundaries, setting them, and keeping them. It’s hard to make those decisions. And keep them.

I’ve..lost track of where this post was going. It’s been two years of actual factual ALS. Life proceeds, as it always does, and so many things have become the new OK. Humans are amazingly adaptable, and I’m still having enough good days to make sticking around worth it. Having the world’s best excuse for not getting out of bed at ALL on a Sunday, nested in cats and blankets, playing video games with no guilt. It’s a recovery day/I woke up with no mana/I just don’t want to Adult today and this “I’m Dying” card says I don’ t have to. Having amazing friends who will bring me dinner, to my bed, because I don’t want to expend the energy to dislodge the cats, pull back the fortress of blankets and pillows, wriggle out of bed, and wall surf to the front door to meet you. And I’m not even dressed.

So that’s pretty much what I did on April Fool Day. Poisson d’Avril. Diagnosis Day. Saddiversary 2: Electric Boogaloo. I hid. And I cried, and I distracted myself with cats and video games, and slept a lot. And then it was okay. I’m still figuring out the new Normal, cause that keeps changing on me.

I really am sorry about being quiet. I do still have things to tell you, and things to show you. I was just being all Emo McCryface for a little bit. I hope you guys are having great days. I love all y’all.