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braindamageforbeginners · 7 years ago

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Day 42 (I think), Radiation 29

Folks, when you come down with a disease, you’ll need a support structure. And you have to recognize that, just as you have your good and bad days, just as you grow and diminish with the disease; your friends and family will do that, too. Which means that, just you’re gonna go a little haywire once in a while, they will, too. You can’t hold it against them, living with a physical reminder of mortality is a hard thing. You just have to make sure the good days in that relationship outnumber the bad.

I bring this up, because I had an epiphany last night, thanks to dear old Dad. Now, full disclosure, my father is helping me out both financially and physically, so he probably qualifies for some form of sainthood, so, my apologies to everyone if it seems like I’m distorting him - that’s how art works, you make something three dimensional into a two-dimensional caricature. I’d do better if I could, that would require film, not text. For full context, we had a blood moon last night (more on that in a second), and Dad was excited to see it (he has even worse insomnia than me). He noted that it would 2038, before the next one, and got cross when I mentioned that really wasn’t anything I was planning on seeing.the next one. I didn’t do it in some mean or Robert Smith-esque way (I don’t have enough hair to be Robert Smith these days; I’m having a hard time pulling a Kenny Chesney these days, even with the considerable power of a Stetson). He’s mentioned that he’s betting this will be the last time I see this thing. And, Great Kraken knows, I’d be only too happy to see the last of this thing, too. Here’s the thing; When you saw the first trailers for the third “Transformers” movie - hideous as it all was - was anyone really dumb enough to doubt that there would be a fourth one? Because I have a stack of medical studies showing a rather alarming pattern for people like me.

Now, I’ll admit, I have great hopes for the Warlocks and Mad Scientist to keep me around for a while; but no doctor - since 2010 - has told me I’ll get the same sort of lump-sum 60 years as everyone else. I might get that much time, eventually, but it will be doled out over 6-18 month segments. Mad Scientist - who has been eerily accurate in her predictions - flat-out told me that the best she could do was keep me alive and mostly-intact between treatments. And the Warlocks, even though they’re gifted necromancers, have told me that this is a multi-year, total-focus investment before any sort of results can be guaranteed. In other words, although I might be able to eventually carve out some sort of life, planning on seeing the next blood moon is utterly ridiculous.

Now, full disclosure; right now, I’m not really upset or frightened or anything at the moment; I’m mostly just tired (when I have time to feel tired, anyway). I am Mark Watney in “The Martian” - so completely invested in surviving to next week that I don’t have time or energy to worry about the week after that (and, as I’ve mentioned, being a functioning sick person today is a full-time job)(and I am not exaggerating that). I solve a problem or two today. Then another one tomorrow. Then the next one. And I try to tell you guys how to solve them. Dad’s still worried about next year’s changes in health insurance policy (and I am too, or I would be, if I had time to stop and be worried). And this is all just a by-product revelation to the big one; and, in order to understand it, you have to understand, Dad loves plans - loves them - and loves linear progression. I’m not going to bash him for that; all human beings do; it’s a fundamental part of the species. We are exceedingly similar people; it’s just I had a few cells do a few more unexpected things happen than him. Which leads me to the major revelation of the piece, reader, and you won’t like it (my apologies). This whole time - since my initial diagnosis last July - I’ve had the nasty sensation that I’m the butt of some grotesque cosmic joke. I’m just the set-up, dear reader; you guys are the joke. Sort of. Follow me on this one.

Now, my existence is far, far more precarious than yours, but I’d argue that the real psychological difference between you and me - on a day-to-day basis - is that I’m just constantly hyper-aware of the degree to which our lives are governed by complete random chance. To understand the full implications here - because this is Kraken Planning 101 - I need you to go back and watch “Back to the Future” (whenever you’re having trouble understanding the universe, this is my go-to starting point, but it illustrates the point), and then - with that idea that linear causality isn’t often so linear - go back and make a list of the number of times your life changed - even moderately - because your alarm clock died. Or a date canceled. Or you didn’t have money to go out with your friends. There are entire lives you lived - or didn’t live - because the wind was blowing the wrong way. If you realized how much you were at the mercy of random chance, you’d curl up in bed and never leave.

And, in that sense, existence - or your existence - seems utterly ludicrous to me. My gods, you people. You talk to bill collectors. You hide your emotions from one another. You put up with loathsome characters you despise because they might offer you money. You don’t go to the gym. You buy dinner for pretty people you hate because they might kiss you. You worry about what your friends or neighbors will think. And you do all of this in a weird, vague hope of a future that will never come, not as you can comprehend it, anyway. This isn’t to say that you shouldn’t plan ahead or cont on the future, but, as someone who’s already taken that bet and lost in the very worst way possible, trust me, it’s a sucker’s bet.

I’m not terribly happy right now, but I will say this - my life would’ve dramatically different if, 16 years ago, someone had told me, “Well, we zapped it this time, but it’s gonna come back in a couple of years. Go, now.” And if you start living your life in that time frame - without expecting to leave anything after a year or so - there is a strange sort of freedom that starts to enter your outlook. You don’t get the full human experience, necessarily, but, if you’re clever, you can get some concentrated ingots of it here and there. You can burn far brighter than you’d imagined possible. You don’t get to go to law school or plan a honeymoon, which sucks, but you get to focus on being the most concrete, focused, distilled version of you there is. And you will - I guarantee you - discover wild, amazing, scary things about yourself. Again, it’s not exactly an existence I’d wish upon anyone, but right now, I got three solid talents: I can figure things out very quickly, I am - historically-speaking - nigh-unkillable, and I can write exceptionally well. And that’s it. I’m placing all three of those on the Warlocks to win in the third race, and the crowd is cheering, and, yeah, there’s a solid chance I’ll lose that bet; but there is a weirdly exhilarating sensation to it all. And I have no idea how this will turn out, but I will write the shit out of every single thing that happens in the meantime.

And the writing. You guys have no idea, but you’re only just getting the very thinnest, smallest amount of output from me, because I have other stuff I have to do to stay healthy and solve day-to-day problems, but, this started as a sort-of hobby to help me work through it all. Now, there just aren’t enough hours in the day to get it all down. And I’m still not getting all this down in a comprehensible form - this is, by my standards, extremely unpolished and weird. And there’s a chance nothing at all will come to this, but, I will say this, reader - and I’ve already expressed this sort of sentiment elsewhere - but there is a bizarre, hilarious, marvelous, stupid, crazy, frightening story inside of me, and I can’t wait to figure it out. And I’ve said it before, but you have one in you, too.

The one great unifying factor to all human expression is that it doesn’t really discriminate, and we can all do it, with a few basic classes. People like Georgia O’Keefe, or Dickens, or Michelangelo didn’t accomplish what they did because they were paid, or because they wanted to - they did because they couldn’t stop. When they saw what was inside of them - what’s inside every single human being on the planet, really - they had to find out how deep that well went. It sucks that I don’t get to plan and scheme like a normal person, I’ll admit it. And it sucks that there are probably entire segments of the human experience that won’t be available to me, but, at the same time, I have absolutely no doubt that, should those things become important, I’ll be able to figure them out. And yeah, if I die in the next year or so, it’ll suck - believe me, it’ll suck - but the greater tragedy of my life, in retrospect, is that it took me this long to know I’m capable of that. Maybe. We’ll see. In six months.

Oh, before I forget; I did get up at 4 am to see the Blood Moon. And at 5:30 am. That wasn’t terribly intentional, but I figured I’d finish up the Temodar in a special way. Hopefully I’ll sleep somewhat-normally tonight, although I’m still on radiation. The radiation side-effects are unpleasant, but I’ll miss seeing the radiation folks. That’s kind of an odd admission, considering that my life should improve (eventually, anyway) once I rotate out of that, but they’re all sweethearts, and it does kind of help to have a set of friendly, consistent faces who’ll take song requests. Still, I’ll be only too happy to see the end of that wretched mask; I’m considering blowing it up with some sort of illegal fireworks or something. I’m taking suggestions on that one.

ANYWAY... WEIGHT: 221 lb. CONCENTRATION: Decent. I’m still completing complex tasks and stuff, but, as you’ve seen in this piece, I’m a little distracted and somewhat scatter-shot. I’m not focused at the moment, but I’m also exhausted and I’ve been running around a lot. APPETITE: Excellent. ACTIVITY LEVEL: Great, considering I didn’t get much sl SLEEP QUALITY: Excellent, but I’m still not getting enough sleep. COORDINATION/DEXTERITY: Not bad. Left hand’s having a tough time at the moment, but I think that might be more a result of pulling something in my arm than any neurological problems. PHYSICAL: Not too bad. I still have a low-grade suture head-ache but nothing that can’t be overcome with lots of Tylenol. And no temodar hang-over this morning, because I was up all night downing water and watching the moon. SIDE EFFECTS: Nothing new in this area. I have all the same problems I did a week ago, for the most part, but, sometimes the best you can ask when you have a disease, is that things don’t get worse. I mean, I have greater ambitions than very-slowly sort of imploding, but the current situation seems more of a three-steps-forward-two-steps back than a major backslide. But I could be wrong; neurological degradation is subtle; I do keep these records as a way to verify symptoms or progress.

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