#i am disabled i have fragile health i NEED TO GO TO DOCTOR'S APPOINTMENTS

[clhampir]

i want my car i want my car i want my car i want my car i want my car i want my car i want my car i want my car I WANT MY CAR!!!!!!!!!!!!!!!

[bluebelly-sun-serpentine]

I feel as though the language of accommodation is backwards in so many cases. Especially in regards to covid, I’ve started reframing things in my head. I am constantly accommodating other people; treating their disability to deal with reasonable daily decision-making and the existence of chronic risk with kindness and empathy, reacting to their defensiveness and hostility about my continued use of and advocation for masks, ventilation, and regular risk assessments with measured responses that mask the rage and helplessness I feel about the apathy of ableism, communicating about my household’s needs in the softest possible way, reacting compassionately when people who have stopped taking any kind of precaution complain that their health has worsened in the long term or their most recent bout with covid has cost them income (even when these people have continually judged my choice to take precautions), being endlessly patient when people invite me (or try to pressure me) to attend risky indoor gatherings instead of saying “you know I can’t do that. Nothing has changed since the last time I had to say no. You could always invite me to something I don't have to say no to.” Ignoring so much cognitive dissonance and self-delusion. Opening as many windows as possible so we all have a better chance of staying healthy. Apologizing constantly about continuing to protect myself and others so that people get off my case about it and can continue living in a fantasy of post-pandemic normality.

I don’t, anymore, think I’m the fragile person in this situation, and I have realized how much this rings true for other ways in which I have navigated the world prior to the pandemic. Bringing my notes and printouts to doctor’s appointments so that doctors don’t have to properly do their jobs. Bringing my partner so doctors don’t have to look past their own misogyny and ableism. Masking physical pain so that others don’t have to feel bored or distracted by it. Masking my expressions of joy or sorrow or wonder when they don’t conform to norms. Tip-toeing constantly around a passive aggressive regional culture of toxic positivity rather than communicating frankly and directly in the manner that has always been more natural to me (for both nurture and nature reasons) to reduce friction for everyone else.

I’m really going to urge other people who find themselves marginalized or othered in some way: how are you accommodating the people who fail to accommodate you? Not just “what accommodations do you need?” Or “how are you being or not being accommodated?” What have you been doing to make everyone around you more comfortable, and how much of that is actually serving you? Some of it may, and some of it may not. How much work are you doing to unburden people of their own consciences? If no one else sees it, can you, at least, take a moment to look it in the eye?

I'd guess this is true of any condition of life (and by condition I don't mean illness, just "a mode or state or being" or "existing circumstances") that is somehow considered non-normative in its context. If you are an immigrant or you live in a racist or xenophobic culture of which you are the target, if you are a woman, if you are fat, if you are gay, if you're an effeminate man, if you are ill, if you are old, if you are deaf, if you use a wheelchair, etc. I know you've experienced something similar to the labor I'm talking about. "Accommodation" is the word we use talk about things disabled or differently abled people need or deserve to have in order to allow them to navigate an ableist world. Practically this language has sometimes been helpful to me – in getting care, in forcing professors into basic ADA compliance by not stuffing me in an overcrowded, unventilated room with 100 unmasked (frequently contagious) people, in allowing me time to catch up after I've been so ill I can't move, in providing spaces where people like me can sit and catch a breath – but increasingly I see it as something that isn't uni-directional, not just something I'm receiving (or fighting and failing to win) but something I am constantly, endlessly doing without acknowledgement, and which, if I ever stopped doing it, would invite serious penalty. I don't know how to change that except by talking about it.

[444meat]

this post is a bit long but please read it if you do not have a sleep disorder, more specifically if you don't have a circadian rhythm disorder, i need y'all to understand something

i never thought i would have to write this, but yes, sleep disorders can be incredibly disabling. my sleep disorder is a disability.

i had to drop out of highschool as soon as i was legally able to do so. i had health issues my entire life, both physical and mental, but the brunt of my physical health issues started when i was fourteen. i had to repeat grades and certain classes due to frequent absences. by the time i was sixteen, i could not attend school without a manual wheelchair. as a young adult now, i can't leave my house without a powerchair if i'll be expected to walk more than five minutes, and even then, it's much better for me to just use one unless it's totally impossible. on top of that, i experience flu-like symptoms that make leaving my house extraordinarily difficult. by the time i dropped out, these symptoms were disabling enough to keep me home, though they were not as bad as they are now.

i bring this up to point out that i am otherwise physically disabled, and to carry on to say that these symptoms were not the driving factor to me dropping out. living in a major city, there is a significant chance that i could have found a school to attend which could accommodate me. it would not be easy and i would still have a much harder time than other students, but it would be an avenue worth exploring. i would be able to try it. considering my financial situation, i would have been able to afford a private school. i could do online schooling. there were options.

because of my sleep disorder, we literally could not even look.

my waking hours vary wildly from day to day. sometimes for weeks at a time i will wake up after sunset and fall asleep after the sun has risen. i've had weeks where my sleep schedule more closely resembled friends i had made on the other side of the world than people i knew in person. even then, i cannot properly adjust to being awake at night, because there are also times when i'm awake on a seemingly normal schedule.

i briefly attended an asynchronous online school before dropping out. it was the best one i could access. it was awful. the lessons were bad, the teachers were bad, the work was bad... not even only in quality. there was a lot of ableism and other bigotries that demoralised me. because i couldn't attend the virtual classes due to my sleep schedule, i also fell behind academically, and because of my other health issues, i didn't have the energy to catch up.

making doctors appointments is terrifying because i never know what my sleep schedule will be like when the time comes. most doctors in my area are extremely booked. i've missed a rheumatology appointment and had to reschedule for six months in the future, and because i had to stop taking my pain meds from GI side effects and my allergy meds stopped working, i had to go without any medication that entire time. i physically cannot force myself to wake up without getting enough sleep because my body is fragile and i will start experiencing severe & unbearable symptoms of my other disorders. these cannot be pushed through. i cannot even try.

the "best doctor" for circadian rhythm issues in my area — a major city, might i remind you — only takes patients during early morning hours. this is not a joke. despite the most common circadian rhythm disorder causing people to wake up late and fall asleep late, the guy who is the "best" for treating them doesn't see people after 11 am. it is easier for me to maintain a 'wake up at 3pm, fall asleep at 6am' schedule than a 'wake up at 3am, fall asleep at 6pm' schedule. i cannot see this doctor. when i briefly managed one appointment with his secretary, she just told me to set an alarm and fall asleep at the same time every day. that was all of her advice. like i have not tried that.

as far as i'm aware, there is a single medicine approved to treat the condition i have. last time i checked, it costs something like three thousand US dollars a month. 6 times as much as my old heart meds, which were already very difficult to get covered, even with really good health insurance. the meds supposedly take months to even start working.

i had a delayed sleep wake rhythm my entire life and ran on very little sleep to get to school, to the point that i started uncontrollably falling asleep at school after my health issues started and necessitated more energy than my body had. my sleep cycle started moving forwards as it does now when i was sixteen. before i stopped attending, i would frequently attend school on 0 hours of sleep, get home, and fall asleep immediately.

the world is not built for people with circadian rhythm disorders. my sleep disorder makes functioning on a normative level impossible.

i NEED people without sleep disorders to stop treating this like it's some funky and low stakes thing to deal with. i am so tired of having people tell me they 'wish they could be nocturnal' or that they 'love staying up all night' when i tell them about my sleep disorder. you DO NOT want this, and this is VERY DIFFERENT from occasionally staying up late for fun. yes, being awake during nighttime hours can be freeing. it stops being freeing when you have no choice on the matter, have to be socially isolated for weeks on end, cannot reliably schedule doctors appointments, cannot attend school or work any job with specific hours, cannot maintain an eating schedule or a schedule for taking medication because you're never awake at normal times, etc etc etc.

and it's not as simple as taking melatonin. when i take melatonin it stops working after two uses and the times it does work i get at most 3 hours of non-restorative sleep and my sleep schedule either goes back to what it was before the next day or gets significantly worse much faster than it normally would. it's not as simple as not using screens. i've been in settings without screens for months and still had it happen. i've lied down for 8 hours trying to sleep and failed. there is no easy fix. this is how my body works.

yes it's a disability. no you don't want it. it's not a quirky character trait. think before you speak please.

a note: this is not intended to state that being otherwise disabled is not also a valid or genuine reason for dropping out of school. there's a good chance i would've had to drop out anyways, and i can't attend school now with how my symptoms have progressed, regardless of the sleep schedule. i wanted to illustrate how the combination of a sleep disorder and other chronic illness makes my life significantly more difficult and how it reduces my access to accommodations and care.

[idolatrybarbie]

the world tipped on its side

chapter three - bad miracle

series masterlist | read on ao3

pairing: francisco "frankie" morales x f!reader

word count: 6.4k

rating & summary: mature | you get a phone call. frankie leads you to pensacola beach, florida.

warnings: ANGST, discussions of health and disability, discussions of surgery, details of physical injury, (the briefest) mentions of suicidal ideation, grief/mourning, reader has a disability, reusing a bit of dialogue from a glee (yes) fic i wrote in high school.

notes: OKAY so i know i am like...really making you work for the porn here. sorry. take this gut-wrenching bullshit instead ??? also thank youuu gin for cheering me on in the DMs and for getting more eyes on my little fic, you are truly the bestest.

You don’t see Frankie for a few days, things operating as usual on set as the last week of June slips by. His number is in your phone now, but you don’t call. Sam goes back to Texas over the weekend and Mia returns to the top of your frequent calls list. After that evening with Frankie things feel different between you and your best friend. You want to ask her all the things she’s keeping from you—or more, all the things she might know you keep from her. White lies and omissions that have spiralled out of your control.

You didn’t realize that lying had become so easy, almost like second nature. How hard it is now to start being honest without the fragile, springy web coming apart and Mia seeing all of it. All of you.

That night, after driving back to set from 7-Eleven and saying your goodbyes to Frankie in the dark parking lot, you went home and stared at yourself for a while in the bathroom mirror. Maybe if you squinted hard enough, you could see what he was always observing within you. All you could see, half naked in front of the glass, were all the signs of medical interference on your body. The spindly scars all along the column of your neck and top of your spine, disappearing into the hair at the base of your skull that was slightly shorter than the rest. The permanent shadow of a line under your chest, a faint reminder of where the vested neck brace sat along your ribs.

You’re sitting in your car, scarfing down apple slices from the craft services table when your phone buzzes in your lap. The number isn’t listed in your contacts, but you recognize it immediately.

“Dr. Lopez,” you say as you answer the call.

“It’s just me honey.” Not Dr. Lopez but her sweet older receptionist, Dawn. “The good doctor wanted me to remind you about your appointment this week. July third at eleven o’clock. You can still make it I assume,” she says.

Shit. Your standing quarterly appointment that you’d already had to push back twice.

“Right, yeah. Should be fine.” You nod like she can see you now.

“Perfect. We’ll see you then. Have a good morning,” Dawn says.

“You too. Bye,” you say. Dawn hangs up first, surely eager to get to that next reminder phone call.

You’ve got shit to shoot that day, but an explanation and your pointed absence should be enough to get those scenes pushed back until after the holiday. Ashton will surely remark about bleeding money for half a day’s work, and you’re already rolling your eyes at the anticipated argument. Whatever, it doesn’t matter. Your health comes first, always.

Someone knocks at the window on the other side of your car. Mia waves at you, a stash of fruit bundled in her right arm as she uses her left to pull the door open.

“Hey,” she says with a huff, taking a seat next to you.

“Did you raid crafty?”

“Are you going to eat it?” she asks.

You answer by snatching the banana from the crook of her elbow, peeling it upside down before you take a bite.

“How are you holding up?” you ask.

It’s always tough for Mia in the days after Sam goes back home. That’s when she’s the one calling you at midnight, needing someone to talk to about nothing and everything. How much of a prick Ashton is, this new yoga routine she’s started that really unlocks one of her chakras, the guy with the sundial collection two doors down from you back in school.

“I’m doin’ alright,” she says. Mia slowly tears at a cutie mandarin, keeping the peel in her lap. “I think about the fact that we only have to do this for so much longer and feel a little bit better.”

“That’s good,” you say.

One thing about Mia is that she loves with her whole heart. Many of her past relationships ended because she wanted more, what her partners considered too much. She’d explained it once, tearful as she used the flat sheet of her twin bed to wipe at her eyes.

“I can’t just stop falling in love with someone. It turns into this free fall. I start to pour myself into this thing, like some sort of void. And it’ll never be full, but that’s okay because there’s supposed to be someone on the other end. Receiving all of that and returning it back to me.”

All you could do then, all you can still do now is nod silently. You have never felt that way about someone. Wasting away on love that will never be reciprocated sounds horrible and exhausting. Watching Mia lose herself in relationships to guys who meant zilch in comparison to the bright and shining star that she is taught you better. If she was decimated by a love like that, you would be absolutely destroyed.

“How’s your banana?”

“Starchy,” you say, mouth still full. You swallow. “Got that doctor’s appointment this week.”

“Oh? Is everything okay?” You hate that look in her eyes, oozing a concern so deep and immediate that it almost winds you.

“All fine. It’s just that quarterly thing. She wants to make sure I’m not dying,” you explain.

Mia hums, eyes on the citrus in her hand. She stops peeling, worry still intense all over. “You would tell me, right? If something was wrong?”

“Of course,” you say, a lie that rolls smoothly off your tongue. Internally you’re already kicking yourself. At the last specialist appointment, the doctor had taken x-rays of your skull, neck, and back. This was the appointment to discuss whatever they’d found with Dr. Lopez, and set out on the next steps in your care plan, if any at all. The fact that Dr. Lopez was so insistent about meeting each time you have had to reschedule tells you it isn’t nothing.

“I hope it goes well,” Mia says.

She pops a sliver of the fruit into her mouth. You adjust your seat back, laying diagonal to the gas pedal to rest your back. For a moment, the sun and silence drifts peacefully between you.

-

The furniture in the practice’s lobby is twenty years out of style; the fabric chairs all dark wood and fern green cushions as they form a double row in the middle of the carpeted room. Each piece of art that covers the wall space is dull and generic. A winter landscape here, mushy brown leaves there. It smells—like old people, like tiny sticky fingers, like ammonia.

When the nurse finally leads you to the last exam room on the left, your heart speeds up. This is where she butters you up, says all these sweet things before Dr. Lopez comes in and tells you that you’re going to be in a wheelchair in the next ten years. But all she does is watch you take a seat on the crinkly, sheer paper on the leather examination bed and ask if you need anything else.

“I’m fine,” you say. Then she’s gone.

You sit and wait for maybe five minutes, mind oscillating between the worst and the reality. Reality is, you’re here. Clearly this is about something, something the good doctor cannot tell you over the phone. Realistically, though, if you were going to die she would have told you by now.

When Dr. Lopez enters, your heart and mind pause simultaneously.

“Relax,” is the first thing she says, and you feel your tense muscles rest to unstrain themselves.

Why that worked, you’re unsure. Regardless, you say, “Thank you. Hi.”

“Hi,” Dr. Lopez returns. “I guess I don’t have to ask how you’ve been feeling.”

“Work’s been kind of getting to me lately,” you say. Not entirely a lie. Everything has been getting to you.

“How’s your limb function?”

“Fine. I haven’t had anything go numb on me in a couple of months.”

Dr. Lopez nods, taking a seat at the empty cushioned chair so that she’s at your level. “That’s good. Would you say you’re doing better?”

You have the urge to say maybe, to give her (and by extension, yourself) a little bit of hope amidst all of this. But you tell her the truth and say no. “That new mattress doesn’t really do anything. My neck is still stiff, and the nerve pain is almost constant.”

“You’re taking all of your medication?”

“And then some. I have an Advil delivery on auto-renewal,” you say.

“There’s an opportunity,” Dr. Lopez says.

“An opportunity,” you repeat.

“For you, for your spine. Surgery,” she continues.

“Okay,” you say slowly.

“I have to warn you that there are no guarantees, and the procedure is highly invasive. Moreso than your last.”

After your first and only surgery following the accident, you woke up feeling unlike yourself. Like someone had sliced you open and stolen a piece of your being while you were asleep on the table. Your skin didn’t feel like your own anymore. Your body was telling you something was still very wrong, as you would learn through the healing process. The pain stayed behind, even as the stitches closed and the skin at your neck mended itself into scars.

This was more invasive. Immediately, you are thoroughly uninterested, shaking your head.

“No. I can’t do that again,” you say.

She sighs. “I understand. They’ve performed the surgery a few times before to some highly successful results, which is why I brought it to your attention.” She’s shuffling through the manila file folder with all of your medical records now.

“Some,” you say.

“Pardon?”

“You said some. What about the others?”

Dr. Lopez purses her lips. She was probably hoping you wouldn’t ask. “Some other patients have seen little to no improvement to their condition or in their pain. And a small minority have experienced worsened pain and further limiting of their mobility.”

You could almost laugh. “And you want me to jump at this golden opportunity to disable myself more?” It’s rude, and you hate the way it comes out of your mouth as soon as you’ve said it.

Dr. Lopez eats the gut punch, shuffling on. “I know there’s a risk, but there’s always a risk. Without further surgery, your condition will worsen over time regardless. I thought this could be an opportunity. But if—”

“Can I think about it?” you ask. “I need to finish this project I’m working on before I can make any decisions. Could you give me the month?”

“Yes, I can do that,” Dr. Lopez says. She says your name, soft and low. The skin around her eyes crinkles, the only eyes involved in any of your medical experiences that has looked at you like another human being; like another soul. “You need to believe that things will get better or they never will. I understand that this…is not how you imagined your life going. But you have to hold space for something good within yourself. Miracles can occur.”

Now you really do laugh, a small snort out your nose as the right side of your mouth quirks up. “I’m not holding out any hope.”

Hope is a funny thing, though. It lingers, festering somewhere inside you in the hours that follow the appointment. If things go well, this could change your life. There’s that pesky word again—if. The surgery could change your life for the worse, too, bringing effects of the injury that are fifteen years away closer to fifteen months. Had this dilemma been posed to the old you, the better you, it would be a no-brainer. She was a risk-taker, fearless in her endeavours once she got a taste of what life could be like on the other side of chance. Now you hedge your bets. Take the jobs as they come, playing it safe with the projects you’re attached to.

You call Mia when you know production is at lunch, laying on your couch as you try and fail to bask in the peace granted to you by taking an emergency day.

“Hi,” you say as soon as the line picks up.

“Hey! How’d the appointment go?” she asks.

“Alright.” You shrug like she can see you. “Doc had some information for me, just thinking about it.”

“Do you want to talk about it?” Mia asks. The bustle of background noise disappears as you hear a door click on her end.

“I’d like to think about anything but,” you say. “What’s going on there?”

“Ashton losing his mind in real time. Before we broke for lunch I was sure he was about to start shouting at people.”

“Great,” you sigh. “Looking forward to it.”

“At least you’ve got the holiday,” Mia says. “This is like your mid-week weekend.”

Right. Independence Day. You already know Mia has plans; she and Sam have been driving to the small, unincorporated town of Juliette for the holiday ever since she followed you down south. Every summer, she asks you to join them, and each time you say no. This year she didn’t bother to ask.

“I’m sure there’s stuff going on in the city,” Mia offers, “or you could go to Florida, hop on some boat for the night. Or follow Frankie.” She laughs as she says it, but the mention of his name has you perking up.

“What?” you ask.

“He’s headed to Florida tonight. Got this air show tomorrow, down at—shit, where was it? Pensacola something. Pensacola Beach.”

“You spoke to him?”

“He stopped by early this morning. Looking for you actually, but Priscilla told him that you’d called out,” Mia says.

“So Florida, huh?” You sit up, pulling your laptop off the coffee table.

“I mean why not?” Mia muses. “Maybe it could be good for you.” Her voice morphs into something softer, less amiable and airy.

“Yeah, maybe,” you say. You wedge the phone between your ear and shoulder, typing at your keyboard.

“But listen, whatever you get up to, text me alright? Even if it’s nothing.” Mia knows you well enough to predict your usual Fourth of July activities: curling up in bed with earplugs and a good DVD, the blinds drawn over your window. “I’ll send you some photos of the fireworks from the river.”

“Sounds good,” you say, half-distracted.

Mia mumbles her goodbye and you hang up, focused on the information passing your screen with every few clicks. In just a couple of minutes, you’ve found the Pensacola Air Show’s website. The when and where details of the event cover the landing page. There's several others, links leading to a detailed history of the show and images from past events that you skip right over. At the bottom of the tab sits exactly what you are looking for, clicking the highlighted link that says Pilots. Organized alphabetically, you find Frankie halfway down the list. What had Mia said? Or follow Frankie… Puppy, meet postman.

The picture used beside his blurb of professional experience is of a Frankie you’ve never seen before. He’s a little younger, clean-shaven in a pressed uniform, the American flag at his left shoulder. This must be his flight school portrait. He looks less weather-worn, all the weight of a life in the military yet to settle heavy over him.

In the following hour, you manage to book a room at some seedy motel in West Pensacola and pack a duffel bag with a day’s worth of clothes. You raid the kitchen, tossing bottles of water and a few granola bars in your bag for the road. Leaving at almost eleven o’clock, you set out for the very edge of Florida’s beaches.

The streets are quiet once again, the community of Cobb County asleep in their beds as you drive, stopping at an intersection. The security lights of the Kroger next to the road bathe you in a harsh white glow, lighting up the shadowy interior of the car. You look down at yourself, seated behind the wheel, ready to drive five hours and some change to go…watch planes circle between the sea and sky.

What are you doing? You aren’t quite sure at the moment. For once, the feeling is invigorating, not hapless.

It’s only when you start passing through Union City on the 403 that you begin to second guess your decision. You stop in East Newnan, the last “big” town for a little while, to use the bathroom. You buy a map and a gas station churro too, hunger getting the best of you; a stunning example of hypocrisy that you can never tell Frankie about. Something tells you he would never let it go.

The roads turn from the dry grey of asphalt to slick black, rain pooled onto the solid surface. A storm must’ve been through here recently, tall crops on either side of the highway swaying with residual winds.

Driving over the Chattahoochee River, you pull into the town of Opelika about twenty minutes later. You park away from the street lights in a Burger King parking lot, waiting for an oncoming bout of exhaustion to either pass or take you to sleep in the front seat. The radio buzzes softly from the car speakers, keeping the beat of your brain as your thoughts drift.

The question still remains: what are you doing, really? Are you so desperate for human connection that you’ll practically stalk the first person who piques your interest?

When you open your eyes again, the sky is light outside your windshield. Stores are still closed in the plaza around you. The car’s analog display tells you it’s barely seven o’clock in the morning.

Back on the road, you watch the world waking up through your windows. Montgomery, Hope Hull, and Letohatchee all pass by before you pull to the side of the road for a stretch. You take a bottle from your bag and chug water sitting on the hood of your car. You take your pills, looking up at the bright blue. Out here, far away from any city, the view is better than you could have imagined.

It’s another three and a half hours before you reach Pensacola, Florida. Eternal beachiness plagues the town, even in the suburbs away from the coast. The Western Inn slouches at the end of the street, sitting just off Mobile Highway with its rough, mint-tinted roof. Checking in at the front desk, a man certainly older than sliced bread hands you a set of jingling keys that unlock a room on the first floor.

The place is nothing special. The toilet is rusted, floors a weepy grey linoleum. The quilt that envelopes the bed is truly garish, dark red lilies and green palm fronds littering the expanse of the fabric. A sad room for your sad journey down to Florida, to see a man you hardly know do what he does best.

You never took a road trip before the accident. There are a lot of things that you never got to do, things that you’d be unable to now: hike across Europe, or drive a race car, or scale the side of the Empire State Building. A road trip seemed so out of the question—where would you go, what could you do—and yet here you are.

At noon, you take a rideshare to the beach. It’s a good thing, too—there’s barely a spot for the driver to idle and let you out of the car, never mind to park.

The sun beats down on you, hot and relentless, the air muggy with warmth. Still, the view of the water is beautiful. Beyond a crowding of luxury beach resorts, the water is as blue and clear as the sky. Waves rush up to the white sand every few moments, the foamy suds receding back into the ocean with its pull. When was the last time you went swimming? You should’ve brought a bathing suit.

Pensacola’s pier stretches out in front of you a thousand feet long. You stay on the shore, taking your shoes in your hands, balling your socks and stuffing them into the left one. The sand is soft on your skin. You dig your toes into its warmth, a small smile gracing your face. It has been so long since you’ve felt something like this.

An announcer farther down the water starts speaking into a microphone, her voice booming across the beach. She introduces the event, all business and no frills, before the sound of her speaking disappears again. The planes are off, moving in the sky before you have time to register what’s happening. Blue and yellow-striped navy planes—the Blue Angels, you remember from the website—jet into your field of view, puffy trails of white exhaust following them wherever they move. A half an hour passes, the blue jets trailing each other, flying upside down, and moving with the skill and synchronicity of an Olympic gymnastics team.

A fleet of five grey planes follow up the first performance, pulling stunts that moreso scare than amaze you. They fly in almost-circles, spinning around each other graciously in the sky before one parts from the group, dipping low. So low, you think the aircraft is about to skate along the water and fly into the Gulf of Mexico. The pilot pulls up just in time, shooting into the air at a thirty degree angle before circling back to join the identical planes.

That’s Frankie, it must be. In truth, you don’t know for sure, but you can feel it. The movements of the plane mimic that of his own, the casual sass of it all, like it’s no big deal. You imagine him in the cockpit, sweating but grinning under his helmet. Suddenly, you’re an expert in analysing the personal swagger of planes.

Another two hours passes in a blistering haze. Eventually, you put your shoes back on and take shelter in a gift shop, the sun too much for your body to handle. You buy lunch—a tall souvenir cup of freshly squeezed lemonade and a hot dog—before finding the only bench in shade left along the sandy strip. The sun eases up as more people filter away from this beach, either back to their cars or further along the sand towards Navarre.

You almost choke on the dregs of your pulpy lemonade when you spot him, Frankie, in line at one of the few other food trucks along the beach. Silently, you weigh your options. Going over and talking to him is fine, probably, but what if it isn’t? What if he thinks you’re a freak for showing up here, on this…public beach. Okay, maybe it’s fine. You can play this off as a funny coincidence.

You are up and walking over before you can think about it any longer, tapping him lightly on the shoulder. He turns, aviators protecting his eyes from the sun. Frankie says your name with an easy grin.

“Funny seeing you here,” he says.

“You too.” You shield your eyes from the sun.

He removes his sunglasses, hooking them in the collar of his t-shirt. “You down here for the show then?”

You hum. “Something like that.”

“Something like that,” he repeats, then nods.

When it’s Frankie’s turn to order, he steps up to the window and asks for waffle fries. “You want anything?”

“Oh no,” you say, shaking your head. “I just had a bite.”

“Gotcha.” He pays, then steps to the side of the line to wait for the food.

“Did you like it?” Frankie asks, cutting in on your thoughts.

“Sorry?”

“The show, d’you like it?” he asks again.

Right. The air show that you drove five hours to, rented a motel room for, bought a very overpriced rideshare to go see. That’s why you’re here.

“Yeah,” you say. “It was pretty cool. I kept half-expecting one of you to crash into the water.”

Frankie’s hand gets a gentle hold on your shoulder as he gives you a friendly pat. It burns at the skin exposed to his warm fingers. “That’s half the excitement,” he says.

When he’s handed a striped cardboard basket of waffle fries, Frankie absolutely douses them in both vinegar and orange seasoning salt. You try not to make a face. Clearly, you’re unsuccessful. The laugh you pull from his chest seems like it rips through him, up his throat and gloriously into the space between you.

Frankie starts to walk and you join him. He asks about the drive; you tell him you got here this morning, coming straight from Atlanta.

“I never realized how beautiful it is, away from everything,” you say.

“You don’t go camping often, I take it,” Frankie says.

You shake your head no, words clogging your throat like a knot once again.

“You should. I know this great spot, right up in Alabama too…” He ends his sentence there, blinking away whatever was supposed to follow it up.

“I wish. With work I barely have time to make dinner most nights.” Not untrue, but not the truth either. You could make time, somewhere in your calendar. Make use of the off-days between projects when all you do is rot against the mattress.

Frankie launches into a camping story from his childhood, when his dad drove them from Texas to Michigan in the dead of winter so they could both see some snow. The stay was tumultuous at best, your eyes widening as he tells you about how none of their gear worked properly.

“Really, I think the only thing that kept us alive for those couple o’ days was the campfire my pops kept up the whole time,” Frankie says.

The sun is setting slowly along the horizon now, the beach drawing a fresh crowd. The group is smaller than before, people awaiting the fireworks to begin popping off of luxury yachts in the distance.

“I have no idea how he did that, but I’m glad you didn’t freeze to death,” you say. “I would be royally screwed without a lighter or something.”

“You don’t know how to build a campfire?” Frankie asks.

“Nope.”

“Oh well, that’s gotta change.”

You two are back on the sand now, shoes in your hands as you walk along the grainy plains. He walks a little away from you, drifting to wherever a stray stick or smaller log lies on the ground. Once he’s collected a bundle of them, Frankie joins you again. He drops the wood to the sandy floor, sitting down in a deep hill of it. Then he’s scooping sand with his palms, leaving a hole in front of him. You sit down and join him, watching as he lays the varying sticks and driftwood into a nest of sorts.

Frankie takes one stick, running it between a deep wedge in one of the drier logs back and forth. After a few minutes of this, he sighs and pulls a lighter from his back pocket, lighting the stick before tossing it to the bed of wood.

“Had that worked, I would’ve been extremely impressed,” you say.

“Had that worked, I would have expected some sort of prize,” he says.

“I’ve got a solid high five or a pat on the back as consolation?”

Frankie raises his palm towards you, and you slap it eagerly. “That’ll suffice. I’m feeling consoled.”

“It’s too humid out here anyway. Luck is not on our side tonight,” you sigh.

“I don’t know. I feel it,” he says. You give him a curious look. “Lucky to do what I love, lucky to be here. Lucky you’re here.”

“I don’t know if luck has anything to do with it,” you say. You and Frankie have already had this conversation.

“Do you feel unlucky?” he asks.

“That’s a loaded question.”

“It’s just a question,” Frankie says. “But I know you’re squirrely about answering those.”

The sky is dark and the sun is gone, almost like it was never there. Fireworks start up behind you, beside you, in front of you. God bless America.

You mull over your usual two options. Deflecting—I’m honestly not that interesting. Or derisive—Not everyone can have a postcard perfect life.

You choose the outlier, a third option. The truth.

"You believe in a bad miracle?" you ask, your voice so quiet that the sound is almost swallowed by the fireworks. Almost.

"What do you mean, a bad miracle?" Frankie asks.

"Like, something unbelievable. Astonishing, you know? But maybe it's not good. Maybe it'd been better if it didn't happen at all."

"I guess," he says. "Why? Had any of those lately?"

You laugh, the sound small and stifled. "You know about the pills," you say—not a question, but a statement. Everyone knows about the pills. They're always on you, almost a part of you, chattering at your waist with every step.

"Yeah," Frankie admits. "Never asked. I didn't want to pry."

A long moment of silence draws on between you. It's your turn to speak, but you can't. What are you supposed to say? You've never told this story to anyone. Mia was there when it happened, and then she was at the hospital, explaining it all. After that, any doctor that you came across simply read your chart. No need for explanations.

"I had an accident," is where you start. "Two years ago. This shoot was weird. Underwater shit in Kaua'i. We were out along these rocks, away from all those beautiful beaches. I was supposed to dive, and like, swim down to the bottom.” Your voice cracks, popping like a candle wick. When did your face become wet with tears?

"So I dove, but no one signaled that there was a wave coming. The stunt coordinator was just entirely off his ass. I got flipped around right under the surface and the uh, the force from the wave knocked me—"

You can't remember everything now, couldn't remember when you woke up in a Hawaiian hospital either. You remember the searing pain after the surgery, the sensation that haunts you now, settled to a dull ebb with time and medication.

"I'm sorry," Frankie says.

"Not your fault. And anyway, I should be happy. Right? That's what the doctors said. That it was a fucking miracle I wasn't paralyzed, or something to that extent. And they’re right. It's a privilege that I'm not pissing myself all the time, that I can even sit here and bitch about it but..." you trail off. "It's kind of dark," is all you say.

"It's fine," Frankie says.

"Sometimes I wonder if it would've been better if I just hadn't made it. Like, this—this life? It’s my bad miracle." Nothing. Crickets. "Morbid, right?"

After a while, Frankie shakes his head. "No. I mean, yeah, but—" He half-shrugs. "My friend, Santiago? The asshole. He's kind of in a similar situation."

"Oh?" you question.

"They offered him another surgery, to fix the issue. He told me he asked if they were sure the procedure would kill him if anything went wrong this time," Frankie says. "So I guess that's his. Bad miracle, I mean."

There's something in his eyes, shiny and unobstructed for but a moment. A glint that makes you want to ask him, what's yours?

When Frankie looks away, he's seemingly snapping you from an overly open stupor as well. The weight of your words settles over you, a small look of horror flickering across your face before you reign it in against the dark.

You shift away from his body in the sand. You've just shoveled a small landfill of your bullshit onto this man, your coworker, and you can't take it back. You can see the words floating like the specks in your office. Bad miracle, hospital, paralyzed. You wish you could grab them from where they move between the two of you and shove them back into your mouth, down your throat where they would effectively die.

Frankie gives you a curious hum, eyebrows quirked as he looks at you under the brief, exploding lights in the sky.

"I should not have said all that. That was so unprofessional. I—"

He says your name, staring at you again. "It's fine. You're fine. We're not at work."

After a while, the waves lapping at the sand, you say, "This doesn't mean you get to pity me or anything."

"Pity you?" Frankie asks. "Wouldn't dream of it."

"Good," you say. "When people find out, or even just after the accident, it's like living a gravy train of apologies and expectations. Other people's sorrow."

"I mean, I get it. You can be sorry it happened," Frankie says.

"I guess. I don’t really understand.” Then, “Condolences feel like empty bombs of other people’s grief passed off to the grieving for defusal. What's anyone supposed to do with that?"

Frankie's looking out at the water, the fire and the sand forgotten now. "Commiserate," he says. "Better to suffer together than suffer alone. On the surface that sounds stupid, but when you're in it, you want someone to do it with you."

You can't help but disagree. This thing, it happened to you. You have to live with the outcome, sure, but why should everyone else? How does that make the thing better?

"I don't know if that's true," you say.

"For you," he says. "And really, I’d say that’s not even the truth either."

The fire crackles in front of both of you, lighting the wick of indignation in your throat.

"What's that supposed to mean?"

"I mean that I've been trying to get to know you for weeks, and I think I was closer when you thought I was a carpenter here to fix the studio upholstery," Frankie says. The camp flickers and reflects in his eyes.

Suddenly, you wish you could implore that you don't like him, put the blame on that wicked crutch of an excuse. Unfortunately there's too much logical evidence against that; that first lunch interaction, the bar, here and now at the beach. Plus all the time you took considering it. Considering him. When did Frankie Morales start to take up so much space in your head?

So all you say is, “I’m sorry,” because there’s not much left but that. Your tears are dry on your face. Frankie’s hand finds yours in the sand, not holding it, but landing nearby. You don’t look at him, and you know his eyes are on you. Red, white, and blue flames light the sky.

The fire dies slowly, your signal to get moving again. If you leave now, you can catch a couple hours of sleep before the non-stop drive back to Atlanta.

You’re about to call a ride when Frankie says, “Let me drive you.”

“It’s fine, really,” you say. You’re split into two halves: the part of you that wants to run away from him, and the part that wants to pull yourself even closer.

“How long ‘til the car gets here?” he asks.

You look at your phone, reading the time estimate. “Twenty minutes.”

That’s all the confirmation that Frankie needs, nodding towards the parking lot as he puts his shoes back on. “Come on. My truck is over this way.”

Getting in is a bit of a struggle, Frankie mindful of the way your body twists as you try to get into the passenger seat by yourself. He ends up getting in on the driver’s side, leaning out of the opposite door to help you up, giving you an odd sense of deja vu.

Up here, you feel so far away from the road and the rest of the world. Sandy concrete turns to solid asphalt, the yellow lines blurring together as the truck drives by. You tell him the address of the motel, watching as he types it into his phone’s GPS at a red light.

Oh god. Oh god. Frankie Morales is taking you home right now. This cannot be happening. The truck is driving at sixty miles an hour. In another twenty seconds you are going to Charlie’s Angels roll out the door, that—

“I’m glad you came,” Frankie says.

“Huh?”

“I was kind of hoping you would. Come down, see the show.” All of his soul-delving seriousness is gone now, Frankie’s demeanor changed as he slides back into the casual banter you two share.

“That’s why you told Mia,” you say.

“Guilty as charged.”

“So that was the plan then? Get me down to Florida, build me a fire, I spill my guts?”

“Not exactly. But friendships formed from fire usually last the longest. Even if that fire is some pit on the beach,” Frankie says.

“I see,” you nod. Friendship. Friendship, friendship, friendship. That’s what this is.

The truck pulls into the dimly lit parking lot of the Western much sooner than you’d like. He walks you to the door, a true gentleman. You can’t figure out how to say goodbye, lingering just past the doorway and the open air.

“Well,” Frankie says. “Happy Fourth of July.”

“Happy Fourth, Francisco,” you return, intoning his full name to put up some sort of barrier. To scold yourself, a reminder of what your relationship to this man really is.

He rolls his eyes with a smile and a huff. “It’s just Frankie.” That should be it, the end of the interaction. Frankie still doesn’t move and neither do you.

This is taking too long, too much time passing for a farewell. You’re being obvious now, watching him watch you half in the dark. You shouldn’t have driven down here. You shouldn’t have gone to the air show. Those things can’t change now, but this can.

But then he takes a deep breath and starts to turn away from you. Your hand flies out and grabs his shoulder, because hell. There’s a lot of things you shouldn’t do. You kiss him, rough and slow, granting Frankie an out if he wants it. When he deepens the kiss, opening his mouth, it’s clear that he doesn’t.

Frankie moves his hands to your ribs, pushing his palms over your body to wrap behind you. You’re pulling him closer by his broad shoulders, noses squishing together a bit. He pulls away for a breath with that flash in his eyes you keep finding. The golden fireworks that sparkle and pop in the distance must be paid actors.

“Do you want to come inside?” you ask, voice strained. Extremely unprofessional, decidedly unplatonic.

“Yes,” Frankie says.

Who fucking cares about those things anyway?

tags: @wannab-urs / @anoverwhelmingdin / @iamskyereads <3

[weirdstrangeandawful]

Okay so a few things that happened because I feel able to talk about it now it's been a few hours (at least in point form). Was a home visit from the OT at the local health authority to do the assessment.

She didn't even ask if she should take off her shoes (I would have probably said it's fine because my flat's tiny and I need to make a good impression, but at least ask...)

The entire appointment lasted less than 20 minutes (my friend's lasted like 2 hours). Not even my anaesthesiology consults have lasted that little time.

Immediately after asking me why I thought my doctor recommended a wheelchair (I explained that I thought I needed wheelchair because of my symptoms), she said that it's unlikely I'll be able to work with them to get a wheelchair (not her decision) because people who need wheelchairs can't walk or can barely walk (I experience partial paralysis and really bad hypermobility as well as POTS symptoms, fatigue, and seizures and I don't walk well without mobility aids)

She then said that I should get a power chair... right after saying I didn't need a wheelchair... and whilst sitting in my flat which is too small for a power chair

She said that people who have a dynamic disability should use crutches instead (I went to get her, using my crutches and I was using a cane in my flat) or a power wheelchair because a manual wheelchair takes the same amount of effort as crutches (not true and also then who uses manual wheelchairs???)

Sorta just ignored my requests for power-assist despite the fact that that's exactly what I need and was saying that I don't understand how manual wheelchairs work (I was in a wheelchair in April and I do wheelchair racing... I know very well how manual wheelchairs work, just not day chairs)

Asked me about activities of daily living but didn't take any of them into account: asked if I could clean (not really, often need help or end up in the ER), asked if I could cook (barely and I also can't eat), asked if I could shower (I told her I couldn't fit a shower chair in my shower and she said I could??? no?? I can't??). Just decided I had no limitations when I am severely limited

She didn't seem to even know how insurance worked (?!)

Then just handed me a list of vendors and told them to pick one and call her when I had. No information on how I should choose, what I was looking for, and we hadn't even discussed my needs for the wheelchair itself yet

She then asked me what I was looking for in a wheelchair without giving me any guidance (even after earlier saying I knew nothing about wheelchairs). I told her my three most important things -- lightweight, power assist, suitable for someone with hEDS -- expecting her to then ask me more questions and she... didn't

She then said (after meeting me for 10 minutes, not asking about my diagnoses, and not asking about my day-to-day life or what I'd use the wheelchair for) that I just needed a 'standard wheelchair with just a basic foam cushion' -- my skin is fragile from EDS, I dislocate my hips in the racing wheelchair I use or just sitting on my bed, I have very little strength in my back muscles, and so many more things that make this not appropriate

Then she told me the price range would be (Canadian) $2500 to $3000 -- the cheapest DME manual wheelchair (without a cushion) which I cannot use is $5000. I might have misheard her because she said it weirdly and she might have meant $25 000 to $30 000 which is expensive even for a manual with power-assist ($9000 to $16 000 range) so I don't know if she is clueless or if she meant the higher range and ignored my insistence on a manual?

I had so much hope. I thought maybe, maybe I was finally going to be able to get help...

This is in my drafts but had notes and I can’t find it on my blog so I’m going to try and post it again…

CW: medical ableism

I am too angry and upset and hopeless right now to go into details but I had my wheelchair assessment today. It was supposed to be an assessment to figure out what my needs are in a wheelchair (starting from the axiom that I need one) and what my funding options are and start looking at options so I can get a wheelchair soon-ish.

I'm just going to say this: medical professionals with wheelchair seating assessments as a responsibility should understand that 95% of wheelchair users can walk unaided to a certain extent.

I had an extremely good experience in the ER for the second time in a row yesterday but I have no faith left in humanity or the medical system right now.

[gaiatheorist]

Flailing.

Internally, I’m flailing, I’m not doing it physically, because it’s half five in the morning, and I’ll probably knock something over.

This is me trying to put things into perspective, and formulate a more sensible plan than ‘Get a job, quickly.’

I sent the ‘Work Capability Assessment’ form back, then acquired a copy of the psychiatrist’s letter, confirming the Complex PTSD, and stating traits-consistent-with-ASD. (Effective use of puppy-dog eyes on my GP.) I sent my monthly reminder to my Work Coach, that the ‘Housing Element’ on my Universal Credit was wrong again. I posted a copy of my Council Tax bill to the job centre, showing the account in my name only, with my ‘single occupant discount’, then the ‘student’ discount for my son being changed to ‘Council Tax Support- Work age scheme’ He’s listed as ‘work age scheme’ because he’s not working, not earning, not contributing, I’m listed as ‘work age scheme’ because of the low income that Universal Credit provides. Every month, UC computers calculate my rent as if my ex is paying half of it, ‘there are two people listed on your tenancy agreement, we have calculated that your share of the rent is...’ I sent a covering letter with the Council Tax bill, giving the ex’s address so they could confirm that he doesn’t live here. I’m ever so helpful, I gave them his National Insurance number as well, on the original benefit claim, it took the woman from the ‘Housing Department’ about 30 seconds to cross-reference his NI number with HMRC. 

I vaguely remember the woman who phoned to verify my details after the PIP tribunal saying my ‘award is no-review’, and then that I should ask for renewal forms no later than  14 weeks before the award expires next March. That would be the start of December, but, Christmas post, and places being closed over the Christmas period... I am meticulous, it’s part of my ASD. I phoned the number for PIP queries, navigated the billions of options on the automated message, and was eventually connected to a man called Dave, at three minutes past ten. ‘Oh, yeah, we usually send the forms about six months before the expiry date.’ ‘I have not received any forms.’ ‘Yeah, I said ‘’usually’’, yours was an appeal, wasn’t it?’ ‘Yes, the award was via tribunal.’ ‘Yeah, that’s not us, that’s HMCTS, I don’t know why we don’t send them,’ Let. That. Sink. In. People who have already suffered the slings and arrows of outrageous assessors aren’t sent renewal forms. If I wasn’t so meticulous, I might have just waited until half-past December, and, when the forms didn’t appear, I would have been timed-out. ‘Phone this number, it’s only about a ten minute call.’ 

The number was ‘for new claims’, so I hung up the first time, and then re-dialled, and explained to the girl who answered that it was a renewal, not a new claim. I remember reading somewhere that the ‘renewal’ form is different to the initial application, it asks whether each descriptor category is better/worse/the same. If she’s sent a new claim form, I’m going to be angry.  

The original award was for three years, the tribunal panel recognised that my brain injuries are permanent, and accepted my reasoning that I needed a period of support to secure medical intervention for mental and physical issues. There was a slight altercation between myself and the doctor on the panel, with him stating that only conditions that had arisen since the date of my application could be considered, I countered that the brain injuries had exacerbated some of the pre-existing mental health issues, and made some of the pre-existing physical issues more difficult to cope with, he repeated the rule to me, and I lost my temper, frontal lobe brain injury, I lose my temper a lot. ‘Fine, fine, you stick to your script’ isn’t a very polite thing to say to a doctor. My ‘date of application’ was March 15th 2017, the ridiculous way the system works meant I did have a lump-sum payment in August 2018, most of which was used to repay arrears on my utilities, some of which was used to replace or repair household goods, you know, to help with my disabilities. (Yes, I know I didn’t ‘need’ tickets to see Tim Minchin, but the system had chewed me up and spat me out, I wanted something for ‘me’.) The ‘backdating’ meant that I had 19 months of a three-year award to access interventions. In the NHS. Much like the students I used to mentor, as soon as you’ve dealt with the initial reason for intervention, it becomes apparent that there’s a deeper, underlying historical or complicating factor that also needs addressing.

I’m not ‘all better now’, I’m still on the first phase of the medication the Neurologist wanted to try, and I need to chase up my review appointment. I’d been confused by various assessors and such asking me ‘What have Neuro said?’ I hadn’t realised that they meant Neurology, not Neuro-surgery or Neuro-psych, so my response was usually ‘They basically said I was lucky to have survived, and that I should just get on with it.’ That won’t have helped my case. Neurology, when I was eventually referred, diagnosed ‘Chronic Migraine’ as well as ‘daily headaches’ and ‘vertigo’, their ‘angle’ on me is the pain, not any of the other issues I’ve had since the brain haemorrhage. I’d already done the ‘initial’ Mental Health intervention, IAPT talking therapy is enough for some people, it wasn’t enough for me, and, during the 17 months between the PIP application and the tribunal decision, I’d been buffeted from pillar to post within the NHS, with Mental Health saying my issues were related to the brain injuries, and Neuro-psych saying my issues were related to the migraine and the pre-existing PTSD and anxiety/depression. (SURPRISE, it was Autism all along, with side-orders of life-stuff, and brain damage.) I completed the next-level Mental Health therapy, because that’s the only way, other than being sectioned, that you can access more intensive/appropriate therapy. Then I completed the next tier, and I’m still not ‘done’ the advice is to complete ‘Emotional Coping Skills’ and ‘Compassion’ courses, I’m waiting for dates. I’m also waiting for a date for the specialised Neurodevelopmental Service, to formally confirm the Autism, and point me in the direction of support/intervention.

I know I’m whining, I know that ‘worse things happen at sea’ and all that jazz. I have a roof over my head, and my Significant Incident Planning means I have a couple of months worth of food stockpiled. I also have candles all around the house, and spare blankets and duvets, in case my gas and electricity are cut off. I’m overwhelmed, between the physical presence of my son meaning I frequently have to take myself to bed to avoid arguments, the Work Capability Assessment, the PIP renewal, the OU course, and generally ‘being me’, I’m incredibly fragile. 

I’m flailing, I’m too stubborn to sink, but, Gods, I’m tired.      

[mebwalker]

Ozias Leduc, Église de Saint-Hilaire, détail (Encyclopédie de l’Agora)

« L’art enseigne, renseigne. Il révèle l’âme. Nul doute qu’il a le pouvoir d’ordonner en un cosmos le chaos de l’inconscient. D’un désordre, d’une souffrance et d’un déséquilibre, il conduit à la stabilité, à l’harmonie et à la joie. » (Ozias Leduc, tiré d’une lettre à Paul-Émile Borduas, 1943)

In a very recent post, entitled Comforting Thoughts, I inserted a link to an article published by the BBC. I am quoting, first, a paragraph from my post, and, second, the article published by the BBC. Nurses are overworked and there are families who do not or cannot, for lack of money or time, participate in the care given a mother, a father, a brother, and other members of their family.

In Comforting Thoughts, I wrote that

“We stayed with him [my brother] the entire afternoon and the little group returned to the hospital in the evening. I stayed home. I don’t want to know how much we paid in parking fees, but if members of his family did not help my brother, he would require the services of at least one professional twenty-four hours a day. A nurse came in to give him morphine and she obviously kept an eye on us, but he wasn’t alone.”

Researching Health Care, I found this article published by the BBC (UK). Home news from abroad. Doctors in Quebec earn approximately three times, perhaps more, the salary of a University teacher in Antigonish, Nova Scotia, and they enjoy a lifestyle most of us can only dream of.

When I moved to Quebec, I could not find a doctor. I phoned and phoned and phoned. I was put on several waiting lists to no avail. The doctors whose office I called always had “more patients than he or she could handle.” I ended up contacting the University of Sherbrooke’s Medical School. A secretary made an appointment for me at a CLSC, Fr / En, a public clinic. I would see an intern. No problem! My intern was a fine doctor and he was supervised. When his internship was over, he asked his supervisor to take me as a patient.

And I am the only person facing this problem. Last week, I met a young woman who had waited 4 years to find a doctor and was sitting in the waiting area of a public clinic, or a CLSC waiting to see an intern. I reassured her. She had come to the right place.

An Aristocracy

As I wrote in my post, doctors were becoming an aristocracy. They work from 9 to 5 (9 to 17 hours) and they may be on call. Some doctors also ask that medicine not be discussed outside working hours: it would be too stressful. They need their rest and a private life. What about patients? Should people go untreated and nurses worked out of their chosen profession?

I once went to ask a Vice-President to help me resume my career. This Vice-President was not a bad person, but he told me that he could not wait to eliminate employees who were fragile. Did he also think universities could not accommodate the needs of persons who could not work 70 hours a week. Did he also think Insurance Companies should support people who fall ill because they have been overworked and intimidated into doing more than they can?

Ozias Leduc (Google)

Ozias Leduc (Google)

Ozias Leduc (Google)

Let us now go to the BBC.

Home News from Abroad: the BBC (UK)

https://www.bbc.com/news/world-us-canada-43336410

“Doctors from the Canadian province of Quebec have shocked the world by turning down a pay rise.

Why would anyone turn down a pay rise?

For doctors from Quebec, the answer is simple: patient care.

An eight-year, retroactive deal struck in February would see about 20,000 of the province’s medical specialists and general practitioners receive an annual salary increase ranging from about 1.4% to 1.8% each year [bold characters are mine].

That would mean that the province, which subsidises the bulk of doctors’ salaries, would be on the hook for an additional C$1.5bn ($1.2bn, £840m) by 2023.

It is a fair agreement, according to the unions representing Quebec doctors, who pushed for the deal with the province.

But not all physicians are on board – more than 700 physicians, both GPs and specialists, have signed a petition from Médecins Québécois pour le Régime Public saying they do not want the rise, and they would rather have the extra money go to patient care and services. The group represents doctors in the province who strongly support public access to healthcare.

Their cry for fairer distribution of government funding comes at a time when the healthcare system is under intense scrutiny.

On Wednesday, an independent report commissioned by Quebec’s Health and Welfare Commissioner found that physician salaries had doubled between 2005-15, while the hours doctors spent with patients declined.

Meanwhile, the province’s nurses are fighting for better working conditions and salaries. A picture of a bleary-eyed nurse posted on Facebook went viral and was shared more than 50,000 times in January.

“I’m so stressed that I have back troubles, enough to keep me from sleeping. I don’t want to go to work because I dread the workload that awaits me,” wrote Émilie Ricard, who said she alone was in charge of caring for 70 patients in one shift. “I come home and I’m crying with fatigue.”

We, Quebec doctors…

“We, Quebec doctors, are asking that the salary increases granted to physicians be cancelled and that the resources of the system be better distributed for the good of the healthcare workers and to provide health services worthy [of] the people of Quebec,” read the letter.

This sentiment has struck a chord with people across Canada and abroad.

The letter was described as “utterly Canadian” by Washington Post reporter Amy B Wang.

In Kenya, the doctors’ letter was greeted with shock, especially since last year Kenyan doctors went on a three-month strike for higher wages.

“It is almost unheard of that a worker would complain of a high salary from their employer,” wrote an article in the Kenya paper The Standard.

At home, the Quebec doctors have been praised by officials, but some of their colleagues have kept mum.

“If they feel they are overpaid, they can leave the money on the table. I guarantee you I can make good use of it,” said the province’s health minister Gaétan Barrette.

Quebec’s physician unions have not commented publicly about the call for less than the agreed-upon pay rise.

In Canada, healthcare is public and run by the provinces, not the federal government, which means that salaries can vary quite a lot from province to province.

The average salary for a physician nationwide was $339,000, according to the most recent data from the Canadian Institute for Health Information.

In Ontario, Canada’s largest province by population, the average specialist made C$403,500; in Quebec, they made C$367,000.

Conversely, family physicians in Quebec made C$255,000, while in Ontario they made C$311,000.

The Quebec doctors’ rebuff of a pay rise has put them at odds with many of their colleagues in other provinces.

The Ontario Medical Association has been fighting for higher wages with the province for years.

The province has cut fees twice in three years and the association still has not negotiated a contract with the province.”

End of quotation.

Conclusion

Why should medical doctors be paid three to four times a university teacher’s salary. I suspect that many doctors, those who are doctors mostly for the money, were disgruntled when the Médecins Québécois Pour le Régime Public refused a rise in salary. They may have been motivated to vote Dr Couillard out of office? As for nurses who had to look after 70 patients, they may have believed that the premier was at fault. Not quite!

In Quebec, future doctors enter Medical School after grade 11 and + 2 years in a CEGEP. They can start earning money earlier than doctors living elsewhere. But so few are available that when one retires, his or her patients are devastated. Yet, between 2005-15, a physician’s salary doubled while nurses looked after 70 patients. What about the wages of an overworked nurse, old-age pensions, and disability benefits? A nurse’s salary does not double in ten years. As for disability benefits, they never go up. The amount is 60% of the salary one earns the last year one works. After 15 years, one’s financial security is endangered. At age 73, now 74, I had to take a mortgage to buy a one-bedroom apartment. But I’m not complaining.

The building had elevators and a reserve fund, etc… A kind friend told me that the decision to move was a “no-brainer.” She’s right. If one has the money, such a decision is a “no-brainer,” but if one lives on a small pension, the matter ceases to be a “no-brainer.” One has to be very careful.

—ooo—

I thank the doctors, the Médecins québécois pour le Régime public, who turned down a rise in salary and I am glad that the working conditions of nurses have been brought to the attention of the world.

Taking care of Jean-Pierre was a full-time occupation, and the nurse assigned to him was looking after other patients. She was a fine nurse, but she was probably relieved to see that members of Jean-Pierre’s family were looking after him. She did not want to neglect a patient. She told us about the little beds available to family and friends who preferred not to leave a dying relative. We were happy to learn that there were little beds for the family.

Jean-Pierre died graciously. He thanked the staff for the fine care he had received. He thanked the priest who administered the Last Rites and he told all of us that he had simply reached sa date d’expiration, his expiry date, which is a date all of us have to face.

  Love to everyone 💕

Tomás Luis de Victoria

O Magnum Mysterium -The Sixteen Christophers

Judith, Ozias Leduc, c 1914 (Musée national des beaux-arts du Québec)

© Micheline Walker 16 October 2018 WordPress

We, Quebec doctors… « L’art enseigne, renseigne. Il révèle l’âme. Nul doute qu’il a le pouvoir d’ordonner en un cosmos le chaos de l’inconscient.

[soovaryit]

I have been RAGING at my body as of late. As I’m sure other chronic pain and illness suffers will understand, I dramatically switch between the inner monologues of ‘I love my body! I’m going to be kind to it and fill it with nutrition and goodness!!’ to ‘I want to forget that I have a body, eat junk food and be drunk 99% of the time’.

This is all tied up in mental health and pain levels of course, but it can often be a reaction to the way in which others treat your pain. I’d love to pretend I’m positive and level-headed enough to not let peoples actions affect my personal outlook but nope. I’m a human being and a fragile one at that and every negative interaction I have around my illness feeds into a negative view of myself. Shout out to my therapist for that line, thanks Lyndz. Today I want to vent about common misperceptions and assumptions around endometriosis and chronic pain in general because they fuck me off and I’d rather address a general audience than have to explain this to individuals that I encounter. Maybe I should just walk around wearing a t-shirt with these on. It would have to be a very big t-shirt. Anyway.

First up – let’s tackle the big one. That endometriosis is a ‘women’s problem’. Problematic on several levels. First of all, endo affects 1/10 people with a reproductive system. This does not mean that they identify as female. They could be trans, non-binary and/or not use she/her pronouns. It’s exclusionary to adopt this kind of universal female rhetoric around the disease. I am guilty of this too but it would be nice to see a shift in the gendered language around endo that doesn’t exclude anyone who isn’t cis or female-identifying. The second way it is problematic is that society doesn’t care about ‘women’s’ issues. The more it is labelled as such the less it is thought of as a HUMAN disease that affects HUMANS. Please, lets start making this a human issue. Yes, it’s ‘taboo’ because it’s about periods and ovaries and all those yucky things that even modern medicine doesn’t want to acknowledge. But imagine if this wasn’t a gendered disease. I can guarantee you there would be extensive research and treatment on a condition that can glue your organs to one another and leave you with trapped internal bleeding and scars all over the inside and outside of your body. Not to mention ruin your mental health and fertility. Which brings me to…

All endometriosis sufferers want babies and that is their number one concern in the world! Who cares about your health and sanity when our sole purpose is to breed!! (I really hope you’re getting my sarcasm here).  It is an undisputed fact that during your journey with endo, (generally male) doctors will comment on your ability to have children without asking. This has even made me, a person who would like children, uncomfortable as it’s often information given to you based on the fact that you have the capability to produce a child, never mind if you have asked about fertility or stated that you want children. It is an irritating assumption that many doctors will offer you as a ‘cure’ when it absolutely isn’t. It’s misinformed, misogynistic bullshit that could be ended by the simple question of ‘are you concerned about your fertility?’ before launching into said bullshit. It also prevents doctors from performing hysterectomies to younger women as there is a ludicrous assumption that they will change their mind later in life and thus any agency around their body is taken away based on one doctor's opinion. I'm sure this is different country to country but in the NHS it is notoriously difficult. I was left with very little information after my lap other than ‘it hasn’t affected your fertility’. Yay for me but will there be any less pain? Who knows! Better crack on and get myself pregnant with my non-existent partner and stop hassling poor doctors over my quality of life. *

Number three is my fave go-to criticism from ‘healthy/able-bodied’ people (I find both of those words irritating but never know what else to say). That raising awareness for chronic pain is attention seeking or asking for a pity party. I think I am safe in saying that literally no one with a disability of any kind wants your pity. I can only speak for myself here but phrases like ‘you poor thing’ and ‘how do you cope?’ ignite a certain fury in me, especially when accompanied by a head tilt and simpering voice. It makes me feel pathetic. It makes me feel like you think I am pathetic, which could not be further from the truth. When I write blogs and share photos of my experiences with pain it is because I want to show people the reality of it. I want to end the misconception that any of my conditions are something to be hidden or ashamed of because that is how society keeps chronically ill people down. I want you to recognise the strength that it takes to live with pain every day and I want you to feel the frustration that suffers feel when they are not taken seriously or believed. Is it attention seeking? Yes. I want everyone’s attention when I explain how overlooked endometriosis and chronic pain are and how medicine is steeped in gender inequality and a disregard for complicated conditions. So there.

And I’ll finish with.. you’re just a hypochondriac! Okay let’s go there. In what world would any human being relish the idea of going to doctors and hospital appointments that cost them money and valuable time, only for their time to usually be wasted by medical professionals that don’t understand or have much of an interest in helping you?** Why would ANYONE want to spend their lives in bed feeling isolated and alone and depressed and waiting to feel well again when they’re not sure they will ever feel well again? Why would I want to spend my time making up pain and illnesses when I could, ooh I don’t know, be making the most of the degree I’m paying £51,000+ for? Or doing normal 25-year-old things like enjoying dating, going on holidays, working? Everything I do has to be a careful calculation of how bad I will feel after and it is exhausting. Some days I don’t want to step foot in my bedroom because it reminds me of miserable, seemingly never-ending bouts of pain and depression/anxiety. I would like to be a ‘healthy person’, whatever is that is but I will loudly shout about every condition that holds me back because we live in a world that doesn’t value people with long-term health problems. So I hope I have got your attention, but I don’t want your sympathy. I want your empathy and understanding. And honestly, I hope people do feel an element of discomfort when they read posts like this because chronic illness sufferers sure as hell don’t feel comfortable ourselves and I am happy for the world to know about it. Now a couple of disclaimers bcos that was a big ol’ rant and some things need to be made clear.

*Did not want this rant to discount the horrendous struggles of infertility because that is an unimaginably awful thing for people to go through and solidarity with you <3 

**There are also lovely, lovely caring medical professionals in the sea of incompetent ones like my doctor who is aptly named Dr.Peacock because he is a beautiful, understanding creature and please keep trying until you find one, you will find one.