Living with YoungStroke, Uncategorized

Living With YoungStroke – 7

When I suffered a series of strokes in November 2015 as a result of a series of incredible misfortunes – assault leading to severe damage in my left leg, severe damage in my left leg leading to rhabdomyolisis in muscles of the lower part of my limb, rhabdomyolisis leading to kidney failure, kidney failure to septicaemia, and finally, septicaemia resulting in blood clots in various sectors of my brain – I never even considered the notion that I was about to enter months of deep depression and crippling anxiety. I was so overwhelmed by the physical effects of the incident I did not even pause to consider it may have implications much more far-reaching than anyone was about to warn me.
In the first couple of months following my discharge from the Hyper Acute Stroke Unit of a London hospital, the aspect of my recovery I should be struggling most with seemed painfully obvious to the outside world. I had a strong limp which sometimes even required the aid of a walking stick, I could barely take five steps before becoming out of breath, I slept a whopping three hours a night at the very most, I was on a cocktail of various medications and, perhaps most noticeably, I had to wear an eye patch constantly as the strokes had resulted in double vision which I could only deal with by observing the world one eye at a time. This would have been enough to completely destroy my psyche at any “regular” time, but coming out of two weeks of intensive care and a prognostic which hadn’t initially involved ever breathing outside air again, much less being back at a full-time job within a few months, my physical health turned out to be – and still turns out to be – the last thing on my mind at any given time.
Very, very suddenly after leaving home I found myself confronted with the enormity of what had happened to me, with the enormity of having my life turned upside down and suddenly feeling so outside everyone’s regular experience, and so outside everyone’s comfort zone. Some friends, whom I had considered extremely close, barely checked on me and didn’t seem to grasp what had happened. I realise this sounds whiny and ungrateful, and maybe it is. But regardless, it left me feeling like I had done something wrong and that instead of dividing my weeks up between hospital appointments and panic attacks, I should be out partying, drinking and occasionally studying like every other regular 21 year-old. At Christmas that year, my extended family barely spoke to me aside from a polite hello. The awkwardness of the situation was painfully apparent on their faces. And I felt like it was my fault if things were awkward. That I should have been able to fix it, that I shouldn’t have had strokes in the first place, that I shouldn’t be making my grand-parents feel uncomfortable.
For months, I felt guilty for not being able to work, for relying on my husband, for relying on my family, for relying on my friends. I felt guilty for relying on doctors. I felt guilty for having survived, and I felt like a burden. I became anxious for asking my husband to get me something at the supermarket two minutes away, and I became anxious about going there on my own, anxious about falling over, anxious about the pain, and anxious that my husband would be mad or disappointed that I was over-exerting myself. For the few months following my strokes, I simply couldn’t win.
Finally, I found a job at a local Burger King – not amazing, no, but a little something to restore in me a semblance of self-worth after having been forced to defer a promising MA until next year. I was so excited to finally be able to contribute to the household income once again. Until, twenty minutes after coming home from my first shift, I had a grand-mal seizure.
These occurred a worrying amount of times over the following weeks, and each time they did and I needed a day or two to rest at home, I was made to feel culpable for co-workers, made to feel like I was simply being lazy. “No one your age has a stroke, are you kidding?!” was a common phrase. “Come on, just admit you were hungover or something”, was another one. It hurt. I shut down entirely and stopped talking truthfully to anyone, stopped confiding in anyone, including my husband. Now, 8 months after the stroke, he’s the only person I dare confide in; with anyone else, I’m too afraid of being judged.
I’m only 21. I should be able to go clubbing. I should be able to spend a day out with friends. I should be able to have fun. But I don’t feel like I deserve it and I feel like I’m meant to pay for skipping my twenties, thirties, forties, fifties, sixties, and just jumping straight into an old person’s disease. I’m meant to pay for getting an illness you’re only meant to get if you have high blood pressure. And although I can now see fine, I can now walk fine and I can now sleep fine, I worry that I will never live the life I was meant to and that there will always be a part of me that isn’t right.

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Uncategorized

The Past is a Foreign Country: They Do Things Differently There

This was written as an assignment a couple of years ago and is one of my proudest achievements to date. If you could take the few minutes to read it I would be eternally grateful ❤

 

  My maman died when I was 18. They didn’t tell me though. They said she went on a trip, a long trip, and that she’d be back one day, but they wouldn’t tell me when, or where she’d gone, which was strange. I always thought it was strange, so I would always ask them when she’d be back, but they would never tell me, and they would always tell me to be patient, and to be quiet, and that maman would be back soon enough. It was Uncle Philippe, he’d say ‘Shut your fucking mouth and wait’, so that’s what I did. I shut my fucking mouth and then I sat down and I waited and that waiting lasted eight whole years, which is a long time. But when I was 26, I remember, it was two days after my birthday, actually it was yesterday, when I was 26 my Uncle Philippe told me to sit down again but this time it was because he wanted to tell me something important, he said. “Pierre”, he said, “I need you to listen very carefully. I need to tell you something about your mother”. And then he told me maman was dead, gone, that he was a liar and she was never going to come back because when people are dead that just doesn’t happen. They’re gone forever, you see?

 

A large brick house lost in the French countryside, 1973. Two blonde women are chirping away merrily in the kitchen as an unwelcome airplane roars overhead, sawing clouds in half in a fit of anger. The smell of onions and tobacco wafts through stale, claustrophobic air and lands gently on the nostrils of a frail black-haired figure curled up on a couch, his bony hands hugging bruised, grotesque arms. His staggered breathing strikes through the stench of food with brutal force and dark eyes flutter open.

A piercing wail flickers across the room and the two women scurry out of the kitchen.

‘Monique, what the hell is wrong with you? I told you to get the meds – the meds, the fucking meds, he needs them or he gets like this, see? For fuck’s sake – ‘

The taller woman grabs a nearby bottle of pills as Monique runs back to the kitchen, searching frantically for a glass of water that splashes all over the carpet as it’s rushed back to the couch.

 

Maman put the two blue pills in my mouth and gave me the water and told me to swallow, so I did that, because I know the two blue pills help when the world disappears and the other people come out. Dr. Dreiser says they’re like magic pills, they take all the other people away and they replace them with nice faces, faces that are pretty to look at, like maman’s face, and Monique’s face. It never feels like they will, it always feel like the other people have taken maman with them, but I have to be quiet and swallow the two blue pills and then everything is better, and then it’s time to take the one orange pill and go to sleep.

 

The figure slumped back onto the couch, limbs flailing sideways like a puppet. Vacant eyes detached themselves from a face forced into abysmal calm and quiet and the two women let out a sigh of relief as empty pupils gazed out the window unseeingly. The staggered breathing turned to hushed anticipation –

 

I opened my mouth and screamed because I didn’t know what else to do, because the shadows were back and they were getting closer and because maman and Monique had disappeared and they had joined them, or they had been taken away, and now it was shadows sitting on the couch with me and looking at me and planning how to hurt me. And the shadows were talking to me too now, they were telling me to calm down and breathe and to remember that I’d taken the two blue pills, and so things would get better soon, the two blue pills always help, don’t they? And so then I remembered I’d taken the two blue pills and I shouldn’t have, I shouldn’t have because now the shadow knew it had gotten its plan right and I was trapped and it was all over, I had survived so far but now they had trapped me and it was all done. And I could feel a hand on my hair and I didn’t know what to do but I didn’t like it. I didn’t like it until it started playing with my hair back and forth, back and forth, back and forth until the shadow was gone and maman’s face was back and I couldn’t really see anything else anymore because everything had turned grey. But Dr. Dreiser said it’s normal for the two blue pills to do that, they turn everything grey and they make it hard to see anything and they also make it hard to hear anything but that’s better than seeing or hearing the shadows, you see?

“Jesus. What the hell was that? I thought these were supposed to stop the crises. Fucking pisstake”.

Monique shrugged.

“There’s no such thing as a miracle cure. They make him shut up after a while, it’s better than nothing”.

She waved her hand in front of the boy’s eyes and smiled as she was met with catatonic silence.

“See? We should count ourselves lucky”.

She got up and drifted towards the kitchen.

“Laure? Come on, the onions”.

I watched maman and Monique get up and I could tell I would be okay because they wanted the shadows to go away and they’d made the shadows go away, they knew the shadows were there and wanted to hurt me so they’d made them leave and now everything was okay, I couldn’t see the shadows and I couldn’t hear the shadows so it didn’t matter that maman and Monique were leaving, because the shadows were gone.

 

_______________________________________

 

I woke up on a couch once, not the couch at home but another couch, another couch that I didn’t like really because it wasn’t the one at home and maman wasn’t there. There was a man asking questions but I don’t really know what questions because it was one of those times when everything was grey and it was hard to see and it was hard to hear, so I think maybe I’d taken the two blue pills but I didn’t remember taking them, which happens sometimes, and I don’t like when it happens but as long as the shadows aren’t there it’s okay. And then there was Uncle Philippe and a room where we were sitting and he was telling me to shut my fucking mouth and I sat in that room for a very long time, for eight years, and eight years is a long time. And sometimes the shadows would come to hurt me, well not sometimes, a lot, and they came more and more if I was in the room for a long time, which I was, I was there eight years, so the shadows were almost always there, but Uncle Philippe still gave me the two blue pills and the one orange pill and then afterwards there were also two blue pills in the morning and then two blue pills at night, and the shadows stopped coming a bit after that but I don’t really know anything because I couldn’t see and I couldn’t hear, except when the shadows were there.

 

The funeral was held on July 12th, 1973, as the boy sat on his bed staring at the varying tones of grey decorating his blanket. They buried the two women together amongst a desolate murder of crows lighting up the freshly-mowed grass with hopeful tunes. Still so young, such a waste, or so they said; and yet the funeral was witnessed by unseeing, underground eyes alone. Eventually, as the eight years dragged by, the gravestones were repainted with the harsh brush of aging weeds and the crows found another home to embrace. Forgotten by all but the dead, the two women hugged the dirt which now sung them their cheeriest lullabies.

Philippe, their brother, took custody of Pierre and flattered himself in thinking he had saved the boy’s life. It was either him or the hospital, after all, and everyone knew those hospitals were nothing more than fronts for bogus illegal experiments. Whereas he offered Pierre a whole room, an actual bed, and three meals a day, and he never forgot to give him his pills; granted, that was more for his personal relaxation than for Pierre’s own benefit, but so what? It came down to the same thing in the end. Pierre had some kind of brain problem, he was crazy, or something like that. That’s what the shrink had said anyway – he’d called it ‘schizophrenelia’, not that that helped Philippe in the slightest – he was a man of science, not of words.

“Schizo…what?”

“Schizophrenia. It’s a mental disorder. I’ll explain what this means exactly and how you can treat it, but it’s safe to say Pierre won’t be living a normal life for a while still”.

“What, like he’s retarded you mean?”

“No, no, but his brain doesn’t function like normal people’s do. He doesn’t understand basic concepts like death, love, time…he gets paranoid, he has hallucinations, he can’t function properly. It’s very debilitating”.

“Fucking retard”. Philippe shook his head in disgust, and nothing but the smidgen of respect he had for the doctor stopped him from spitting on the floor. “He yells all the time, is that part of your schizo thing?”

“Yes, that would fit. But don’t worry sir, a number of treatment options are available to stop the crises – if you choose to take care of Pierre, that is. Most of my clients would rather refer such people to psychiatric hospitals. Too much responsibility. You don’t want him ruining your life, he’ll always be in your way, he’ll stop you from achieving your goals. Would be a damn shame considering he doesn’t have the first clue what’s going on around him”.

Philippe lifted his eyes from the ugly painting they had been angrily firing lasers at. It really was a damned ugly painting – his retard nephew could have done better.

“Bullshit. With all due respect, doctor”, Philippe sneered, “I’m man enough to take care of that kid no matter how retarded he might be. My sisters cared about him, fuck knows why, and I at least owe them that. I don’t give the first fuck about Pierre, but I gotta do it for the non-retards at least. So you can take your medical opinion and shove it up your –“.

He proceeded to being thrown out of the doctor’s office with an interminable prescription and a note which read “I’m doing this for Pierre, not for you!”

So he liked to think he was a saviour of sorts. And what did it matter that the kid still didn’t know his mother was dead? The shrink had clearly said he didn’t know what time was, or what death was for that matter, so it wouldn’t help to tell him in any case; best to just keep him in his room and give him his meds on time, he seemed alright enough that way.

But despite these rational assurances, guilt and remorse ate away at the man and as the years dragged by, the reproachful voice at the back of his head grew louder until one night, his alarm clock glowing a fuzzy red 4:31am across the room, he took it upon himself to climb the creaky stairs to the boy’s cage and shake him out of his medicated stupor.

 

There was a shadow in my room when it was dark, I was supposed to be asleep but I wasn’t really, I was just pretending to be asleep because the shadow was touching me and shaking me and trying to get me to get up so I knew the shadow must be there to hurt me and so what I did was pretend to be asleep because I thought if I was asleep the shadow would leave. And then it did leave because my plan to pretend to be asleep worked, and then suddenly it was all light in the room and the shadow was gone and Uncle Philippe was there and he looked really mad and he was yelling something but I don’t know what because when it’s just been dark it’s hard to really see or hear anything because I think it’s the two blue pills before bed that do that. But then he told me to shut up and sit down so I did that because I know that when Uncle Philippe says to shut up and sit down I better do it otherwise he hurts me, and I don’t like to get hurt, it doesn’t feel good, it feels like the shadows are back. So I shut up and sat down and he said “Pierre”, he said, “I need you to listen very carefully. I need to tell you something about your mother”.

 

Dead. Uncle Philippe says that means that the trip maman went on, well she’s not coming back from it. But actually it’s not really a trip, well we don’t know, she hasn’t gone anywhere but maybe she has but we don’t really know that, we can’t know until we’re dead as well but then we don’t really know what dead means so I don’t understand what Uncle Philippe is saying but what I do understand is that I can’t see maman again because Uncle Philippe hurt me until I understood that because he says it’s important for me to know, but I’m not sure why, but if I ask why then he’ll hurt me more so I can’t ask. But maman is gone for good, forever, and I don’t want her to be gone for good and forever so I scream because I don’t know what else to do, because maman is the only one who protects me from the shadows and what will I do if maman doesn’t come back? And I asked Uncle Philippe that and he said I’d managed to survive the shadows for eight whole years, and eight years is a long time, so I’ll be fine, clearly I don’t need maman, but I said I do, but he didn’t listen, he never listens, he just told me I needed to take more pills but I said that I already took them and he answered it doesn’t matter, take more pills and be quiet and go back to bed.

 

There’s this thing that they call the past, and I don’t really understand what it means, like dead, I don’t really understand what that means either. But Uncle Philippe said the important thing to know about the past is that it’s over and it never comes back. He said it’s sort of like a foreign country: they do things differently there. So in the past maman was here and maman kept the shadows away and we lived in that big house and the planes always flew over that house and woke us up when it was dark out. But now, when it’s not the past, he says it’s the present, I don’t know why, but that’s what he says, in the present we don’t do things like we did in the past and everything is different so now I live in that room and the shadows are here a lot but so are the two blue pills so they make the shadows disappear most of the time, and most of the time I’m in bed and I can’t really think of much, but Uncle Philippe says that’s good because it means I can’t think of the past, because if I thought of the past I would be sad, but I don’t know what sad means either. All I know is that I need to shut up and stay in bed.

 

And so as weeds reclaimed their soil and gravestones turned to unwanted memories, so did the boy, trapped between a fictive world of shadows and a real world of opaque hatred. He compartmentalised time as little boxes of images floating around in his brain, mental photographs of his mother to the left because he’d been told to view things from left to right and he’d been told her story was over. In the middle loomed his uncle, red rays emanating from all extremities and various tones of fiery colours erupting from his eyes; and to the right the box wallowed in empty misery, because no one had ever bothered to tell him about the future. The boy had created his own vision of the past, he had conceived his own notion of the present, but no one had ever imagined that he would need to know about the future. The past was the only foreign country, after all; the box to the right was shaped to contain nothing but his uncle’s spirit. So he watched the box to the left, he reached out to it, lifted his fist in agonising hope, clenching at the air in front of his eyes and praying that one day, his fingers would wrap around something he could hold on to.

And as for death, well, death wasn’t real. There was no such thing as what his uncle had called ‘gone forever’, and the shadows were proof of that; once the stuff of nightmares, they had evolved into the comforting embrace of the boy’s mother, loving him in their own, ever-present way, because the shadows were both in the left box and in the middle box, and the shadows brought his mother back.

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