I hurt. Everyday. They tell me that it’s “normal,” a part of disease. They say the aches and pains that incise my kidneys, steal air from my lungs, are expected, routine. The seizures that grip me, take control of my body away, and leave me feeling more exhausted than I could if I’d run for leagues more than miles. But supposedly, they’re “in line” with a prognosis.
Bullshit. None of this is normal, or routine, except that I’m dying. That’s what we do. We die. But I’m dying the most terrible kind of death, the kind where no-one can do a damned thing about it or even figure out why. I’ve spent months in and out of hospitals, chained to beds by I-Vs, Heart monitors, and catheters.
Do you know the pain or humiliation of a torn catheter? Or even what one is? It’s a tube they shove into your urethra. You know, that thing you piss with? I haven’t gone to the bathroom in almost a year. And don’t get me started on sponge baths.
You know that joke that guys like to tell; “Nurse, I’m ready for my sponge bath?” Well it’s all in good fun, until you wake up in the middle of the night, covered from ass to neck in shit from a year’s worth of liquid diets and hospital food, and have to have one. It’s not funny then. Or the other three-hundred odd times, with a different nurse every two nights.
But you know what’s worse? Even worse than the drugs that make you puke, or the humiliation of being on-display for med-staff 25 hours a day, or constant, nagging pains that cut and stab at you day and night, cause you to scream, cry, or rage through the morphine? You know what’s worse? Having a perfectly able body whither away before you– your perfectly able body.
When I first entered the hospital, before the misdiagnoses of metastasized carcinomas, leukemias, and a half-dozen other, terrifying cancers, I was two-hundred pounds of tonka-tough American muscle. I worked eighty-hour weeks as a welder, union-born and bred. I bled excellence and I sweat green. I had a half-mil house, a stunning wife, and two teenaged kids that’d managed not to fuck up their lives with dope or booze. I was living the American dream.
But like that great philosopher Carlin once said, they call it that ’cause you gotta’ be asleep to believe it. Christ what a wake-up call I got.
Have you ever seen a man, so big, strong, tough, that the only person you can think to compare him to’s a guy like Schwarzenegger? Well that was me. I may not’ve had the chiseled jaw, or that lady-killing Austrian accent, but I damn near had the rest. I was him. He was me. But that first episode? None of that meant jack-shit.
You know what they say about the bigger they are? Well, when I fell, I almost took a whole damned gas plant with. No bullshit. Working with an open flame, spot welding in a natural gas refinery carries its own set’a risks, but no-one ever expects to suddenly find themselves out of control of their body, seizing on the ground next to a flailing torch that’s half-cutting through a hot gas line. The only thing that saved me was the fact that I’d managed to cut the damn gas line to the torch in my state.
A plume of fire was roasting the air that was barely making it into my lungs, but the torch wasn’t strong enough to breach the full gas line ’cause of it. And thank fuck for those reinforced tanks. If it weren’t for their double-insulated walls, that gas would’ve exploded, caused a chain-reaction and taken the whole plant down with it. Of course, it would’ve spared me the agony that came next, but even with it, I can’t imagine having all that death on my shoulders. Even dead. Foreman said something later about 2,000 guys on-site, and I was the only one sick that day. Fuck, that would’a been a catastrophe.
The local paper did an interview with me not long after. They’d heard about the incident, wanted to try and drum up some of their own brand of fear mongering. They sent some hot-shot reporter girl over to try and make a fuss about the safety regulations. Christ, she could’a been my daughter. Fresh outta’ college and making those squinty, suspicious eyes at me. She sat me down to ask “hard” questions, but was stunned when all I gave her was the real truth. She batted her lashes a few times too. I guess she hoped I’d cave, screw the union and the gas company over.
I didn’t. There wasn’t anything to say. It wasn’t the job. It was me. They say accidents don’t really happen, but no one can predict just dropping to the floor and frothing at the mouth. As far’s I know, not much of that interview made it into the paper beyond a few of my own words. Guess they didn’t quite get the reaction they were hoping for.
That was when the Union began its own investigation. I talked to the rep that was in charge of the whole thing. He said it was a “formality” thing. Bullshit again. The gas company wanted to make sure they couldn’t blame me, sue my pants off, and take my benefits away. The Union rep eventually made sure to note there was nothing at fault on my end, beyond my obvious ailment. Legally, they couldn’t touch me for that.
What did it matter though? Through all that, I went from one doctor’s office to the next, every other night in the ER for seizures, chest-pains, near-on strokes. I guess something just wasn’t quite wired right in my brain. Maybe ol’ Pop’s genes were finally hittin’ their stride, givin’ me some of his late-life ills. I don’t know. But then again, neither does anyone else.
The first time I noticed the weight loss, I was being weighed at a specialist’s office. I was down to one-ninety, skin sagging and muscle half-eaten away already. He was one of the many specialists, I might add. In the end, he was about as useless as the rest of ’em, but only the first of the neuro-specialists I’ve had the great displeasure of meeting. That was the first time I heard about MRIs and EEGs. If only I’d known what fun those couple of words would end up being. Turns out, when you’ve got twenty year old ink in your arms from shitty, basement tattoos as a teenager, some of them might turn out to have metal in them.
The first time I had an MRI, it damn near ripped the skin off my arm. To their credit, everyone in the hospital freaked. They treated me good about it. They’re always nice like that– like they want to get you better, but really you know all they care about’s what the rest of us care about; putting your time in to clock out so you can go bang your spouse and fall asleep with a beer afterward. I can’t blame them for that though. That’s the human condition. That, and I’m pretty sure it wrecked the machine. Not many men can lay claim to causing a million dollars of damage in under thirty seconds.
After that, I spent three-months between the main bullshit and having to get my earliest tattoos removed and skin grafted on. You know where they took that skin from? My ass. That’s right. So now, not only was I bandaged on my arms, seizing three to four times a day, in and out of the ER and Doctor’s offices every other day and night, now I was walking around with a gimp because my ass hurt. Talk about shit or get off the pot. Hell, I couldn’t even sit on one.
At least I can look back on that and laugh. The rest ? All I can do’s shake my head.
That American dream I was talking about? It took a while– well, not really– but it unraveled into the nightmare we all knew it could really be. Almost as soon as things took a turn for the worst, I found out each of my kids were gettin’ into trouble– Son was boozing it up, and my Daughter was smokin’ pot on school grounds.
I guess I can’t blame ’em. They’re just kids and they don’t know better. Don’t have the “tools” to handle the kind of fuckery old dad’s health’s put ’em through. My wife on the other hand… The less said the better, but from what I understand, she’d fit right in with some of the army-wives that marry off just before their husbands’ deployments.
Whatever. Water under the bridge I guess. We’re all destined to do two things alone in this life anyhow; shit, and die. Well, I’ll have the latter covered anyway, even if I’m covered in the former when it happens. Maybe then, at least, I’ll be a good joke; he was such a shit he went out covered in it.
Ah hell, who knows, maybe medical science will finally reach a point that it can diagnose me. I doubt it. They say they don’t know what’s wrong with me. That all this breathless agony and withering muscle-tone’s in line with a prognosis and they’ve just gotta’ find the right one, treat it. I guess all they need’s a name. Something to call it, you know? Something hepatic, or encephalitic, or something with one of those -itis suffixes. I don’t know about them, but I call it life, and it’s a tragedy. A god damned tragedy.