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rainbowfic2016-08-31 09:50 am
starphotographs) wrote in rainbowfic2016-08-31 09:50 am
Meme Party 17, Olympic Gold 7
Name: starphotographs
Story: Corwin and Friends (kinda!)
Supplies and Styles: Graffiti (Closing Ceremonies), Frame
Characters: All new faces, but there’s an Easter Egg.
Colors: Meme party 17 (Disaster Girl), Olympic Gold 7 (Summer)
Word Count: 3,700ish
Rating: PG-13
Warnings: Choose not to warn.
Summary: ”The shock of your body awake, a temple, a tomb, and a safe. It runs ‘til it doesn’t; they come and take it away.” - Doomtree, “Off in the Deep” (A bright young girl adjusts to life with a mysterious illness.)
Note: Don’t be surprised if you see more from this narrator! I quite liked writing her, and I want to know her better.
Living With Iatrogenic Post-Cryopreservation Syndrome: a Guide for Patients and Families
(Or, the Fraction of Infinity We’ve Been Given)
Iatrogenic Post-Cryopreservation Syndrome (IPCS) is a severe, lifelong, incurable condition. However, it can be managed with treatment, and many patients report a reasonable quality of life. Most will agree that it’s certainly better than the alternative!
I don’t remember turning sixteen. I don’t remember it, because I’d been dead for a week, and was lying on a table in a freezing room with a zipper in my chest, being rewired. We were supposed to go to the paint-your-own pottery place, then out for pizza, then home to eat cake from that grocery store with the weirdly good cakes. Pretty boring, especially since that’s what we’d done for everyone, every year, as far back as I can remember. But, it was going to be as “pretty alright” as it always was, so I was looking forward to it, anyway.
Those fucking library books ruined everything.
I’d accidentally kept them a week past due, and was thinking of just hiding them under my bed and keeping them so I wouldn’t have to deal with the fees and the lectures. But then my mom found them, yelled at me for being disorganized, and told me I’d better get my ass in gear before the library closed, just so I couldn’t use that as an excuse to keep them around another night, which would turn into another week. Because, apparently, that’s how things usually go with me.
My rational self finally reemerged, and told me I might as well get it over with. I stuck the books in my backpack and hopped on my bike, still seething.
I was so damn pissed, and in such a big hurry, that I didn’t even see that tree surgeon’s big green van heading straight for me.
I don’t know how exactly it was supposed to work, but something about how the van knocked me and my bike into each other ruptured my aorta on contact, and I started to die right there in the street.
I finished before they got there, but they were able to cool me down in time. I didn’t wake up brain dead. I just woke up regular dead. Or something close. I’d already died, and I remembered being dead, so “alive” doesn’t feel right.
I’m something unaccounted for.
A month later, I finally had a few bites of pizza and cake, which I immediately threw up. I found out I’d missed half of summer vacation. I was told I was going to have to repeat a grade, and got in a screaming argument with my parents when I said I’d rather just take an equivalency test. This wasn’t the first time that happened, but it was the first time I ended up winning the fight.
It seemed like we were finally all in agreement: I’m already dead, so fuck it, then.
*****
Nutrition can be an issue with IPCS-- digestive issues and malabsorption are common. However, there are steps that can be taken to minimize negative effects on overall health.
I’ve been getting better with solid foods. Everything is staying down and leaving on time. Finally.
I have not, however, gotten better with dinner. My parents staring worried holes into me, asking questions faster than I could think of answers, asking questions with obvious answers, asking questions that don’t have anything to do with anything. Are you feeling alright? Are you going to eat any more? Are you-? Do you-? Can you-?
This wears on a person after a while, especially when one is already exhausted and completely done with just about everything. I lean forward and put my head on the table, in a last-ditch effort to keep out my surroundings.
My parents start fretting more. Meanwhile, my younger brothers have been loudly dicking around with their food for the last twenty minutes. The smell of the hotdogs and ketchup is unbearable. I ask to be excused.
I head up to my room, read another overdue book I’d been hiding. Lie around fucking with my phone, listening to music and chewing on my headphone cord. Scratch at a drawing for a little while. Fall into the deepest sleep of my life.
A few hours later, I wake up in the dark, finally hungry.
I eat a cold hotdog in front of the bright fridge, and drink three glasses of water. I sit on the kitchen counter and stare out the window until dawn, then head upstairs and pretend like I’d been sleeping.
*****
Management of IPCS is complex. Many patients are on upwards of a dozen medications. This may seem daunting at first, but, with practice, becomes routine.
Gavin, my older-younger-brother, is terrified of needles. I have to give myself five shots in the morning, and I chase him through the house, hobbling after him as best I can, trying to force him to look. Eventually, he locks himself in their bedroom while I struggle to get up the stairs, sputtering pathetically with exertion and laughter. Other times, my mom puts a stop to it.
“Claire, knock it off and come take your pills!”
She shakes the pill organizer like a can of cat treats. I give up, sit back down in the kitchen, and get to work. I seriously consider just putting all the pills in a bowl and eating them with milk and bananas.
I never throw out the bottles, because they seem like something that would come in handy. Even though I’m starting to have to actively think of things to put in them. My desk drawer is full of little orange bottles; containing paper clips, thumbtacks, mechanical pencil leads, spare screws, candy, band-aids, pop tabs, bobby pins, and god only knows what else. I can’t so much as pull the drawer halfway open without waking the whole fucking house.
*****
IPCS patients often have mobility issues, due to tissue breakdown affecting the joints, and hypotension causing dizziness. This can be a great source of frustration for some.
I’ve always been happy in my room. Never more than since after the accident. But, one night, I woke up at around three, intensely missing the world. Still in my pajamas, I gathered up my shoes, backpack, and glasses. Wandered out into the still, hot night. Knees and back aching, bone-tired, unsteady. I was seeing stars, but I knew where I wanted to go: the gas station three blocks away.
Once there, I’d get a cold slushie and some kind of chalky, jaw-cracking sour thing, like I always did when I couldn’t get back to sleep in summer. Those times were always all my own. My own fistfull of dollars to spend, my own thoughts in the silent dark, the sound of my own sneakers on the still-warm asphalt.
It was more of a slog this time, a pilgrimage through dull pain, back to the girl who’d left what I am in her place.
I never did find her, but the least I could do was eat her snacks. And promise that I’d watch after the life she’d handed off to me. I sat on the curb, mouth full of fine-ground ice, seeing if I couldn’t remember the feeling of melted slush in my veins.
*****
Not much is known about how IPCS affects the brain, but many find that they’ve undergone significant personality changes, ranging from apathy and loss of interest in people and activities, to a complete overhaul of their ideas and beliefs. This is often troubling for the patient themselves, but moreso to their friends and family. As in cases of neurological injury, it’s often best to accept your loved-one for who they are now, and not put pressure on them to return to their former selves, which could be impossible.
For the first time since the van struck me down, I had a visitor. It was my friend Miranda, and she didn’t seem to be having much more fun than I was. We lurched and stuttered our way through a half-hearted conversation.
“So, have you animated anything?
It was a reasonable enough ice-breaker. I’d been making little cartoons since I was thirteen, by drawing on tracing paper with colored pencils, photographing the frames one by one, and adding my own voice and sound effects when that was finished. Before the accident, I’d been getting really good, but I hadn’t picked it up again. It didn’t exactly sound unappealing, but I was always tired, and drawing too much made my hands hurt.
“Nah, but I drew a few comics.”
Miranda, who’d been examining the carpet from her perch on my bed, perked up a little.
“...Oh yeah? Can I see?”
I passed her my notebook.
“Sure. They’re not very good.”
Because of the hand thing, I hadn’t done anything long-form, and what I had were mostly glorified doodles. A few panels of me chasing Gavin with a needle. A few more of my pulmonologist absent-mindedly doing the rubber pencil trick while he talked to me, which always drove me up the walls. A single panel of a lady escaping from jail, hanging her own intestines in the window and sliding down. A couple other things, mostly unfinished. If Miranda thought any of them were funny, she didn’t give any indication.
“Oh, cool. It’s nice to see you working on something, at least… I mean, after… And when I came up to your room and saw you today, you looked so…”
I knew what she was thinking. Everyone was thinking it. They were just too polite to say. And I was too polite to tell them it wouldn’t bother me if they just came out and said it. Because that would let them known I was on to them. We were all skittering around each other nervously, trying not to ruin illusions that none of us had in the first place.
“...So like a fucking bog mummy.”
Miranda shook her head.
“No! Just, like… Like you’re sick. And you’re probably just, um, really scruffy. Like, your hair… Do you want me to fix your hair?”
My long, grey-blonde hair, dusty and almost corpse-colored even before all this, was dull and dry and stringy, falling down my back in tangled strands like dead vines. I shrugged.
“Sure?”
So she untangled my hair and braided it, which was probably as awkward for her as it was for me. During and after, we kept trying to talk, but the conversation always fizzled. Like we were too far away, separated by a high fence I was never meant to climb.
The whole time, I’d just wanted to be left alone, to not have to talk. But, I found myself strangely sad when she left. I still thought she was a good person. I didn’t know what my problem was. Or if it was somehow her problem, or just a problem all on its own, drifting through space and sticking to everyone, looking for a master.
Later, I decided I was tired of my hair. I’d never really liked it. I didn’t have the energy to take care of it anymore. So I got the scissors out of my rattling drawer, went to my bathroom mirror and chopped off the entire long braid. It sat, dead, in my dead hand. I coiled it up and stuck it in the cabinet, free at last.
And I realized I no longer recognized myself. With my new haircut and all the weight I’d lost, I looked like a twelve-year-old boy. Or at least the corpse of one, dead for centuries, of some plague that people only got back when no one was surprised that kids just keeled over sometimes. Now, I guess we’re getting less surprised when they stand back up.
I was mottled and veiny and busted. My haircut looked worse and worse the longer I looked at myself. My eyes sat dark and vacant in my white skull. I could see the ridge of my pacemaker, almost feel the tubes running down my limbs and the wires sitting flush with my spine. I looked, and felt, like I was cobbled together with paperclips and leftover bits of myself.
I decided I didn’t really care.
People change.
*****
IPCS patients are prone to blackouts. This can refer to fainting, which is common due to respiratory, circulatory, and autonomic problems. However, it can also refer to a second, poorly-understood phenomenon. It has been suggested that the brain somehow “remembers” the death experience, and can spontaneously revert to experiencing the world from that state. This has been described as “perceiving without perceiving,” and, though alarming, isn’t harmful in itself. However, safety precautions should be taken, as these breaks in sensation and cognition can be dangerous in certain environments. People with IPCS shouldn’t drive, and should ideally be accompanied on all outings by someone who understands their condition.
“Claire. Claire. Claire. Claire.”
I was everywhere and nowhere for a while, and then I was standing in the grocery store again. My mom was repeating my name over and over again, which was mostly just embarrassing, because I didn’t know how long she’d been doing it, or who’d been standing around gawking at the blank screen and the broken record.
“Mom, I told you that doesn’t work. I can’t hear you when it happens.”
She sighed.
“That’s what they say, but I don’t know what else to do.”
Nobody knows what else to do, least of all me. All I know is that I always come back feeling like I’d missed something important.
Like I’d seen this whole great world of ours for all it is. If only I could grasp it. If only I could hold it all in my head at once. If only I could explain it to myself.
I could finally know where really I fit in. What was really happening around us, what twists and turns around itself and makes a world, what comes together and makes minds spring up like mushrooms wherever objects learn to make themselves.
But, it always slips away. We weren’t built to hold it. Only sit with it and survive it.
Maybe that’s the only answer we need.
*****
IPCS is progressive, incurable, and irreversible. The body eventually breaks down due to poor cell turnover (as in severe radiation poisoning, though much slower in most cases) a process that can be delayed, but cannot be halted at this time. It can be an overwhelming condition to live with, as the prognosis is ultimately poor, and the disease process is painful. However, life expectancies for sufferers have doubled in the past ten years alone, and the symptoms can be managed.
I have a chronic, severe, life-limiting illness. I have medical implants. I’m Living With IPCS. They won’t put it any other way.
No one is lying to me. They’re just telling me irrelevant truths because no one wants to look at some poor, sickly, injured kid and tell her she’s decomposing alive. That she’s less alive, per se, than she is a corpse full of wires. Plug her in and watch her go.
(“What a foul and awesome display.”)
I’m a cyborg, a revenant, and a grand experiment. And I’m not alone. But I still sometimes feel like I’m the first one standing where I’m standing right now.
And I’m pretty sure it’s only because they won’t call it what it is. Because they don’t know what it is, what to call it.
The disease model doesn’t really fit. The life/death binary doesn’t quite hold it. Because we’ve done what we do best. Again.
Even more than they don’t want to acknowledge my fate, they don’t want to acknowledge that the world isn’t what it once was. Something has been broken. To re-narrativize the human condition, we’re going to have to start over from scratch. Determine the new rules. Again.
(“Now we are all sons of bitches.”)
*****
It is recommended that patients connect with others living with IPCS, who can more easily relate to their unique struggles.
My parents expressly forbid me from reading anything but that stupid corner-stapled heap of printer paper I got from the hospital social worker. They didn’t want me to be scared.
As if I’m not scared already.
As if I don’t know exactly what’s going to happen.
As if a handout could ever teach me how to live, and to die, as I am now.
I looked through it a few times, found nothing useful, and tossed it in my bathroom wastecan, where it sits to this day. When the can fills up, I’ll finally throw it out.
In the meantime, I’ve been learning about the others.
The first ten were failures, surrendered by their families in exchange for a paycheck. They were laid down and chilled and zipped and unzipped and unmade and rebuilt. They started breathing, stayed asleep, and died in their beds within a week. But each body breathed a little longer; each wire-triggered inhale a small victory.
(According to the tinfoil hat brigade, it really began in a big warehouse out in the wasteland, but I can’t find out enough to make up my mind.)
The first success wasn’t so much that as just the first to stand up. But, he managed to drag himself through almost half a decade, followed the whole time by people who told him he’d be dead in months, and I guess that counts for something. Twenty years old but smaller than I am. Lost again by twenty-four. The first time, he died from severe chest trauma and mild vacuum exposure. The second, no one was really sure, but he had a shitload of morphine left in his rotting liver, so it was probably his own idea that time around. He had a lot of health issues that mostly got blamed on noncompliance, as if everyone forgot he was the first. I pieced together a few vague details from old magazines: he was just about to graduate, he was probably an unpleasant person, and he had a friend with him on the space station who refused to comment. I looked at pictures in the Journal of Bionics, Prosthetic Technology, and Cybernetics, and saw the zippers. But I never learned what he thought about. The black bars over his eyes kept me from even guessing.
The second didn’t outlive the first. She never wanted it. Her family wasn’t thinking straight, and only wanted to save her. For unknown reasons, her flesh didn’t cooperate with the tubes. Tissue oxygenation was compromised. Her skin started sloughing, her left arm had to be severed at the elbow after the fingertips turned black, and she was dead of septic shock within a year and a half. Her brother wrote a book, told the story of her life. I decided I liked her. She was an artist. She had a loud laugh, and loved spiders. She was terrible at guitar and kept her upstairs neighbors awake all night. I wanted her to tell me how she endured the worst, but she wasn’t there. She had to fall so I could stand.
The most enduring survivor lasted fifteen years. She died a thirty-five-year-old young woman, met her grandchild at forty-seven, and died again at fifty. A full life, if slightly abridged. She gave interviews and talked to newspapers. Asked what the real difference was between her and everyone else. Aren’t we all just gasping meat machines? Aren’t we all racing against against the clock? Couldn’t we all be decaying tomorrow? “Who knows. Maybe you’ll be hit by a truck. What then?”
What then, indeed.
What now?
*****
I’m the only one who can tell myself what this will mean to me. I’m the only one who can teach me how to live. I’m the one who’s going to have to die. The people who came before might have known things, but I can’t make all of it apply. They weren’t me. That’s my job. Don’t fucking tell me how to do it. Don’t fucking tell me how to feel. And don’t try to tell my my future, because there’s an infinite chance that you’ll be wrong.
I already know what my life is: painful, foreshortened, inconvenient, imperfect. Not at all what I imagined.
And I’m going to live it, anyway.
I don’t know how long I’ll last. I might stop breathing in my sleep tonight. I might live maybe five or six good years. I might surpass good old Grandma Zombie and get twenty, learn who I am when I’m almost middle-aged. No matter what, it probably won’t be as long as I’d been expecting when I was a scatterbrained fifteen-year-old girl, sulking about some overdue books.
“Expecting.” As if this world owed me anything.
But, I can’t really bring myself to feel upset about it. Because a fraction of infinity is still infinity. And the time I have is still my own.
I could do about anything.
I could start falling apart tomorrow. Or live a few more years and say goodbye on my own terms when the going gets rough. It’s still possible I’d get long enough that my life might still pass in eras and stages, big rounded hunks of time.
And, whichever way I go, however long I last, it’ll be enough, because I’ll make it enough. I’ll have enough time to do what I want, because I’ll do what I want with the time I have. Just like everyone else.
I probably won’t grow old. I’ll never have children. My days as an enthusiastic but truly terrible softball player are probably over. And I’ll have to figure out how to keep drawing with aching hands.
But, those don’t seem like such terrible constraints to work with. I can do this. I can make something out of it. I can make it my own.
A fraction of infinity is still infinity.
Plug me in and watch me go.
Story: Corwin and Friends (kinda!)
Supplies and Styles: Graffiti (Closing Ceremonies), Frame
Characters: All new faces, but there’s an Easter Egg.
Colors: Meme party 17 (Disaster Girl), Olympic Gold 7 (Summer)
Word Count: 3,700ish
Rating: PG-13
Warnings: Choose not to warn.
Summary: ”The shock of your body awake, a temple, a tomb, and a safe. It runs ‘til it doesn’t; they come and take it away.” - Doomtree, “Off in the Deep” (A bright young girl adjusts to life with a mysterious illness.)
Note: Don’t be surprised if you see more from this narrator! I quite liked writing her, and I want to know her better.
(Or, the Fraction of Infinity We’ve Been Given)
Iatrogenic Post-Cryopreservation Syndrome (IPCS) is a severe, lifelong, incurable condition. However, it can be managed with treatment, and many patients report a reasonable quality of life. Most will agree that it’s certainly better than the alternative!
I don’t remember turning sixteen. I don’t remember it, because I’d been dead for a week, and was lying on a table in a freezing room with a zipper in my chest, being rewired. We were supposed to go to the paint-your-own pottery place, then out for pizza, then home to eat cake from that grocery store with the weirdly good cakes. Pretty boring, especially since that’s what we’d done for everyone, every year, as far back as I can remember. But, it was going to be as “pretty alright” as it always was, so I was looking forward to it, anyway.
Those fucking library books ruined everything.
I’d accidentally kept them a week past due, and was thinking of just hiding them under my bed and keeping them so I wouldn’t have to deal with the fees and the lectures. But then my mom found them, yelled at me for being disorganized, and told me I’d better get my ass in gear before the library closed, just so I couldn’t use that as an excuse to keep them around another night, which would turn into another week. Because, apparently, that’s how things usually go with me.
My rational self finally reemerged, and told me I might as well get it over with. I stuck the books in my backpack and hopped on my bike, still seething.
I was so damn pissed, and in such a big hurry, that I didn’t even see that tree surgeon’s big green van heading straight for me.
I don’t know how exactly it was supposed to work, but something about how the van knocked me and my bike into each other ruptured my aorta on contact, and I started to die right there in the street.
I finished before they got there, but they were able to cool me down in time. I didn’t wake up brain dead. I just woke up regular dead. Or something close. I’d already died, and I remembered being dead, so “alive” doesn’t feel right.
I’m something unaccounted for.
A month later, I finally had a few bites of pizza and cake, which I immediately threw up. I found out I’d missed half of summer vacation. I was told I was going to have to repeat a grade, and got in a screaming argument with my parents when I said I’d rather just take an equivalency test. This wasn’t the first time that happened, but it was the first time I ended up winning the fight.
It seemed like we were finally all in agreement: I’m already dead, so fuck it, then.
Nutrition can be an issue with IPCS-- digestive issues and malabsorption are common. However, there are steps that can be taken to minimize negative effects on overall health.
I’ve been getting better with solid foods. Everything is staying down and leaving on time. Finally.
I have not, however, gotten better with dinner. My parents staring worried holes into me, asking questions faster than I could think of answers, asking questions with obvious answers, asking questions that don’t have anything to do with anything. Are you feeling alright? Are you going to eat any more? Are you-? Do you-? Can you-?
This wears on a person after a while, especially when one is already exhausted and completely done with just about everything. I lean forward and put my head on the table, in a last-ditch effort to keep out my surroundings.
My parents start fretting more. Meanwhile, my younger brothers have been loudly dicking around with their food for the last twenty minutes. The smell of the hotdogs and ketchup is unbearable. I ask to be excused.
I head up to my room, read another overdue book I’d been hiding. Lie around fucking with my phone, listening to music and chewing on my headphone cord. Scratch at a drawing for a little while. Fall into the deepest sleep of my life.
A few hours later, I wake up in the dark, finally hungry.
I eat a cold hotdog in front of the bright fridge, and drink three glasses of water. I sit on the kitchen counter and stare out the window until dawn, then head upstairs and pretend like I’d been sleeping.
Management of IPCS is complex. Many patients are on upwards of a dozen medications. This may seem daunting at first, but, with practice, becomes routine.
Gavin, my older-younger-brother, is terrified of needles. I have to give myself five shots in the morning, and I chase him through the house, hobbling after him as best I can, trying to force him to look. Eventually, he locks himself in their bedroom while I struggle to get up the stairs, sputtering pathetically with exertion and laughter. Other times, my mom puts a stop to it.
“Claire, knock it off and come take your pills!”
She shakes the pill organizer like a can of cat treats. I give up, sit back down in the kitchen, and get to work. I seriously consider just putting all the pills in a bowl and eating them with milk and bananas.
I never throw out the bottles, because they seem like something that would come in handy. Even though I’m starting to have to actively think of things to put in them. My desk drawer is full of little orange bottles; containing paper clips, thumbtacks, mechanical pencil leads, spare screws, candy, band-aids, pop tabs, bobby pins, and god only knows what else. I can’t so much as pull the drawer halfway open without waking the whole fucking house.
IPCS patients often have mobility issues, due to tissue breakdown affecting the joints, and hypotension causing dizziness. This can be a great source of frustration for some.
I’ve always been happy in my room. Never more than since after the accident. But, one night, I woke up at around three, intensely missing the world. Still in my pajamas, I gathered up my shoes, backpack, and glasses. Wandered out into the still, hot night. Knees and back aching, bone-tired, unsteady. I was seeing stars, but I knew where I wanted to go: the gas station three blocks away.
Once there, I’d get a cold slushie and some kind of chalky, jaw-cracking sour thing, like I always did when I couldn’t get back to sleep in summer. Those times were always all my own. My own fistfull of dollars to spend, my own thoughts in the silent dark, the sound of my own sneakers on the still-warm asphalt.
It was more of a slog this time, a pilgrimage through dull pain, back to the girl who’d left what I am in her place.
I never did find her, but the least I could do was eat her snacks. And promise that I’d watch after the life she’d handed off to me. I sat on the curb, mouth full of fine-ground ice, seeing if I couldn’t remember the feeling of melted slush in my veins.
Not much is known about how IPCS affects the brain, but many find that they’ve undergone significant personality changes, ranging from apathy and loss of interest in people and activities, to a complete overhaul of their ideas and beliefs. This is often troubling for the patient themselves, but moreso to their friends and family. As in cases of neurological injury, it’s often best to accept your loved-one for who they are now, and not put pressure on them to return to their former selves, which could be impossible.
For the first time since the van struck me down, I had a visitor. It was my friend Miranda, and she didn’t seem to be having much more fun than I was. We lurched and stuttered our way through a half-hearted conversation.
“So, have you animated anything?
It was a reasonable enough ice-breaker. I’d been making little cartoons since I was thirteen, by drawing on tracing paper with colored pencils, photographing the frames one by one, and adding my own voice and sound effects when that was finished. Before the accident, I’d been getting really good, but I hadn’t picked it up again. It didn’t exactly sound unappealing, but I was always tired, and drawing too much made my hands hurt.
“Nah, but I drew a few comics.”
Miranda, who’d been examining the carpet from her perch on my bed, perked up a little.
“...Oh yeah? Can I see?”
I passed her my notebook.
“Sure. They’re not very good.”
Because of the hand thing, I hadn’t done anything long-form, and what I had were mostly glorified doodles. A few panels of me chasing Gavin with a needle. A few more of my pulmonologist absent-mindedly doing the rubber pencil trick while he talked to me, which always drove me up the walls. A single panel of a lady escaping from jail, hanging her own intestines in the window and sliding down. A couple other things, mostly unfinished. If Miranda thought any of them were funny, she didn’t give any indication.
“Oh, cool. It’s nice to see you working on something, at least… I mean, after… And when I came up to your room and saw you today, you looked so…”
I knew what she was thinking. Everyone was thinking it. They were just too polite to say. And I was too polite to tell them it wouldn’t bother me if they just came out and said it. Because that would let them known I was on to them. We were all skittering around each other nervously, trying not to ruin illusions that none of us had in the first place.
“...So like a fucking bog mummy.”
Miranda shook her head.
“No! Just, like… Like you’re sick. And you’re probably just, um, really scruffy. Like, your hair… Do you want me to fix your hair?”
My long, grey-blonde hair, dusty and almost corpse-colored even before all this, was dull and dry and stringy, falling down my back in tangled strands like dead vines. I shrugged.
“Sure?”
So she untangled my hair and braided it, which was probably as awkward for her as it was for me. During and after, we kept trying to talk, but the conversation always fizzled. Like we were too far away, separated by a high fence I was never meant to climb.
The whole time, I’d just wanted to be left alone, to not have to talk. But, I found myself strangely sad when she left. I still thought she was a good person. I didn’t know what my problem was. Or if it was somehow her problem, or just a problem all on its own, drifting through space and sticking to everyone, looking for a master.
Later, I decided I was tired of my hair. I’d never really liked it. I didn’t have the energy to take care of it anymore. So I got the scissors out of my rattling drawer, went to my bathroom mirror and chopped off the entire long braid. It sat, dead, in my dead hand. I coiled it up and stuck it in the cabinet, free at last.
And I realized I no longer recognized myself. With my new haircut and all the weight I’d lost, I looked like a twelve-year-old boy. Or at least the corpse of one, dead for centuries, of some plague that people only got back when no one was surprised that kids just keeled over sometimes. Now, I guess we’re getting less surprised when they stand back up.
I was mottled and veiny and busted. My haircut looked worse and worse the longer I looked at myself. My eyes sat dark and vacant in my white skull. I could see the ridge of my pacemaker, almost feel the tubes running down my limbs and the wires sitting flush with my spine. I looked, and felt, like I was cobbled together with paperclips and leftover bits of myself.
I decided I didn’t really care.
People change.
IPCS patients are prone to blackouts. This can refer to fainting, which is common due to respiratory, circulatory, and autonomic problems. However, it can also refer to a second, poorly-understood phenomenon. It has been suggested that the brain somehow “remembers” the death experience, and can spontaneously revert to experiencing the world from that state. This has been described as “perceiving without perceiving,” and, though alarming, isn’t harmful in itself. However, safety precautions should be taken, as these breaks in sensation and cognition can be dangerous in certain environments. People with IPCS shouldn’t drive, and should ideally be accompanied on all outings by someone who understands their condition.
“Claire. Claire. Claire. Claire.”
I was everywhere and nowhere for a while, and then I was standing in the grocery store again. My mom was repeating my name over and over again, which was mostly just embarrassing, because I didn’t know how long she’d been doing it, or who’d been standing around gawking at the blank screen and the broken record.
“Mom, I told you that doesn’t work. I can’t hear you when it happens.”
She sighed.
“That’s what they say, but I don’t know what else to do.”
Nobody knows what else to do, least of all me. All I know is that I always come back feeling like I’d missed something important.
Like I’d seen this whole great world of ours for all it is. If only I could grasp it. If only I could hold it all in my head at once. If only I could explain it to myself.
I could finally know where really I fit in. What was really happening around us, what twists and turns around itself and makes a world, what comes together and makes minds spring up like mushrooms wherever objects learn to make themselves.
But, it always slips away. We weren’t built to hold it. Only sit with it and survive it.
Maybe that’s the only answer we need.
IPCS is progressive, incurable, and irreversible. The body eventually breaks down due to poor cell turnover (as in severe radiation poisoning, though much slower in most cases) a process that can be delayed, but cannot be halted at this time. It can be an overwhelming condition to live with, as the prognosis is ultimately poor, and the disease process is painful. However, life expectancies for sufferers have doubled in the past ten years alone, and the symptoms can be managed.
I have a chronic, severe, life-limiting illness. I have medical implants. I’m Living With IPCS. They won’t put it any other way.
No one is lying to me. They’re just telling me irrelevant truths because no one wants to look at some poor, sickly, injured kid and tell her she’s decomposing alive. That she’s less alive, per se, than she is a corpse full of wires. Plug her in and watch her go.
(“What a foul and awesome display.”)
I’m a cyborg, a revenant, and a grand experiment. And I’m not alone. But I still sometimes feel like I’m the first one standing where I’m standing right now.
And I’m pretty sure it’s only because they won’t call it what it is. Because they don’t know what it is, what to call it.
The disease model doesn’t really fit. The life/death binary doesn’t quite hold it. Because we’ve done what we do best. Again.
Even more than they don’t want to acknowledge my fate, they don’t want to acknowledge that the world isn’t what it once was. Something has been broken. To re-narrativize the human condition, we’re going to have to start over from scratch. Determine the new rules. Again.
(“Now we are all sons of bitches.”)
It is recommended that patients connect with others living with IPCS, who can more easily relate to their unique struggles.
My parents expressly forbid me from reading anything but that stupid corner-stapled heap of printer paper I got from the hospital social worker. They didn’t want me to be scared.
As if I’m not scared already.
As if I don’t know exactly what’s going to happen.
As if a handout could ever teach me how to live, and to die, as I am now.
I looked through it a few times, found nothing useful, and tossed it in my bathroom wastecan, where it sits to this day. When the can fills up, I’ll finally throw it out.
In the meantime, I’ve been learning about the others.
The first ten were failures, surrendered by their families in exchange for a paycheck. They were laid down and chilled and zipped and unzipped and unmade and rebuilt. They started breathing, stayed asleep, and died in their beds within a week. But each body breathed a little longer; each wire-triggered inhale a small victory.
(According to the tinfoil hat brigade, it really began in a big warehouse out in the wasteland, but I can’t find out enough to make up my mind.)
The first success wasn’t so much that as just the first to stand up. But, he managed to drag himself through almost half a decade, followed the whole time by people who told him he’d be dead in months, and I guess that counts for something. Twenty years old but smaller than I am. Lost again by twenty-four. The first time, he died from severe chest trauma and mild vacuum exposure. The second, no one was really sure, but he had a shitload of morphine left in his rotting liver, so it was probably his own idea that time around. He had a lot of health issues that mostly got blamed on noncompliance, as if everyone forgot he was the first. I pieced together a few vague details from old magazines: he was just about to graduate, he was probably an unpleasant person, and he had a friend with him on the space station who refused to comment. I looked at pictures in the Journal of Bionics, Prosthetic Technology, and Cybernetics, and saw the zippers. But I never learned what he thought about. The black bars over his eyes kept me from even guessing.
The second didn’t outlive the first. She never wanted it. Her family wasn’t thinking straight, and only wanted to save her. For unknown reasons, her flesh didn’t cooperate with the tubes. Tissue oxygenation was compromised. Her skin started sloughing, her left arm had to be severed at the elbow after the fingertips turned black, and she was dead of septic shock within a year and a half. Her brother wrote a book, told the story of her life. I decided I liked her. She was an artist. She had a loud laugh, and loved spiders. She was terrible at guitar and kept her upstairs neighbors awake all night. I wanted her to tell me how she endured the worst, but she wasn’t there. She had to fall so I could stand.
The most enduring survivor lasted fifteen years. She died a thirty-five-year-old young woman, met her grandchild at forty-seven, and died again at fifty. A full life, if slightly abridged. She gave interviews and talked to newspapers. Asked what the real difference was between her and everyone else. Aren’t we all just gasping meat machines? Aren’t we all racing against against the clock? Couldn’t we all be decaying tomorrow? “Who knows. Maybe you’ll be hit by a truck. What then?”
What then, indeed.
What now?
I’m the only one who can tell myself what this will mean to me. I’m the only one who can teach me how to live. I’m the one who’s going to have to die. The people who came before might have known things, but I can’t make all of it apply. They weren’t me. That’s my job. Don’t fucking tell me how to do it. Don’t fucking tell me how to feel. And don’t try to tell my my future, because there’s an infinite chance that you’ll be wrong.
I already know what my life is: painful, foreshortened, inconvenient, imperfect. Not at all what I imagined.
And I’m going to live it, anyway.
I don’t know how long I’ll last. I might stop breathing in my sleep tonight. I might live maybe five or six good years. I might surpass good old Grandma Zombie and get twenty, learn who I am when I’m almost middle-aged. No matter what, it probably won’t be as long as I’d been expecting when I was a scatterbrained fifteen-year-old girl, sulking about some overdue books.
“Expecting.” As if this world owed me anything.
But, I can’t really bring myself to feel upset about it. Because a fraction of infinity is still infinity. And the time I have is still my own.
I could do about anything.
I could start falling apart tomorrow. Or live a few more years and say goodbye on my own terms when the going gets rough. It’s still possible I’d get long enough that my life might still pass in eras and stages, big rounded hunks of time.
And, whichever way I go, however long I last, it’ll be enough, because I’ll make it enough. I’ll have enough time to do what I want, because I’ll do what I want with the time I have. Just like everyone else.
I probably won’t grow old. I’ll never have children. My days as an enthusiastic but truly terrible softball player are probably over. And I’ll have to figure out how to keep drawing with aching hands.
But, those don’t seem like such terrible constraints to work with. I can do this. I can make something out of it. I can make it my own.
A fraction of infinity is still infinity.
Plug me in and watch me go.
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Also, I spotted that easter egg. Poor Martin.
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