Tag Archives: Arthritis

One Year.

I’m not that good at remembering numbers. Except birthdays of the people I love and old addresses. But today I found myself rolling around in Parc Lafontaine waiting for open hours at the pool. I started off on my regular path, by the water, watching the sun set, then I found myself going farther, past the volleyball and picnic tables. Past the shady parts with the tall trees, past the open field, back to Sherbrooke street, in front of the Notre Dame Hospital. I noticed the west entrance was blocked off and being renovated. I noticed a lot of people in pale blue hospital gowns in wheelchairs smoking with their families and I wondered if they were jealous of the speed of my scooter. My mind wandered to thinking about how much better it is than those hospital chairs and how it wasn’t that long ago since I was in one, and then it hit me: its been a year to the day that I broke my femur. How the hell could I forget that?

A year ago this morning, I went from running around my apartment getting ready to rush out the door for my last day of a job, to lying in a puddle of half-drank cat water in my underpants, water seeping into my menstrual pad. I went from calling for my neighbours to help me, to crawling on my back to reach my phone and calling various people until I reached my brother and Hannah and they convinced me to call 991. It’s been exactly one year since I was being carried down my two flights of stairs on a rickety stretcher by two first responders who I worried might have a cardiac arrest before we made it down. My leg was in a temporary cast made of recycled cardboard, swelling to widths I’ve never seen. One year since Hannah and I had fro-yo in the emergency room, the nurse unable to take that sweet contraband away from me. You’re not supposed to eat anything until they know for sure that you’re not going to need surgery. Its 11:00pm, about the time a year ago that I was parked in the dep* parking lot across from my apartment in Pascale’s mother’s car as my brother made neighbour arrangements for my cat and packed a few week’s worth of underwear and any dresses I had and grabbed the bananas I told him about on my table because I didn’t want them to go bad.

One year.

Of hospital visits, of language barriers, of waiting rooms, of pain medication schedules and brother-provided gluten-free beers to help the codeine kick in. Time spent in the oldest and heaviest wheelchair you can imagine, bathroom breaks timed out, crying on the couch because the woman wasn’t going to come in the morning and I didn’t know how I would pee, trying female urinals, failing at female urinals. A year of relying on family members and friends who gave new meaning to the word: solid. A vow never to flake-out on people again and a year trying to put that into practice.

One year full of physio, getting boss in a wheelchair, getting rejected by bus drivers, learning that little steps are the biggest, learning that one step into a building may as well be a million. Being told about the importance of walking, of exercising, of keeping my weight down, of taking pills everyday; being told I need to get back to normal, get on with my life, stop spending my mornings at physio.

A year full of regret and missing my old apartment, that I would sometimes jealously peep into if I went to the dep and it was dark out and the lights up there were on. A year full of fighting my shrinking self-confidence and resisting microaggressions and bullshit from people on sidewalks and hiring committees. A year of looking for that spot where my identity is formed, and trying to spread it around a bit; make it less dependent on walking. A year of doing everything in my power to get up and walking again and then building a more fitting vision of how to get around, as I’ve come to understand that walking too much is not good for me. And too much is not a fixed amount. A year of building-up muscles and the strength to fight for myself, when in the past I didn’t feel authorized to. Time spent in the pool rediscovering my love of water and discovering a new love with J.

One year of wearing crocs at all times.

Well I didn’t know what to think about it. I didn’t know how to feel when I finally remembered. So I rolled over to the bench across the street from Notre Dame where I had sat with Deon, Pascale, Mum, and Joe after an x-ray check-up. It was the time before the doctor told me the bone had healed, but it had been doing well. A year ago we sat there, I craving sushi, my mother craving answers in a language she could understand, my brother craving country air, Pascale craving to get on the highway already, and Joe probably craving a cigarette or the feeling of nothingness in his mind that he was accustomed to. Today I sat there in my scooter thinking, god: a year ago I had no idea what was in store, what kind of weird shitstorm I was going to be at the eye of along with many other Montrealers; what discriminatory underbelly of the city I was going to be exposed to. I had no idea I would be living the ‘don’t get mad get political’ mantra every time I left my freaking apartment.

Five weeks less than a year ago I sat at that bench in a relationship that was no good for me, with the idea that after this bone healed everything would go back to the way it was before: painful, exhausting, bull-headed, metro-taking normalcy. I had needed the changes this accident forced on me long before that day.

And half a year ago during rehab I had no control over how I got places. I just sat there, waiting. Sometimes for a ride or energy to walk that never came.

Today I sat there, hearing the howl of a husky dog and of skateboards taking quick turns and I thought about the people who have helped me out in so many ways.

Mum, Jo, Lyssa, Hania, Rosie, De and Pascale, they all stayed with me, making sure I had anything I needed or wanted. They fed me and watered me, and made me laugh and hung out with me when I was grumpy.

De busted me out of the hospital that first night, convinced that the country air would be much better for me than the stale adult wing of the hospital, complete with a barfing guy across the hall. He barbequed hardcore pork for dinner almost every night; claiming that the calcium from the meat being cooked on the bone would help me heal. I believed it.

My mum flew across the country to help out in any way she could, spending the majority of my leg-straight-in-a-splint-don’t-move-it-can’t-move-it time. This was a challenging time and she strengthened by example, never letting up on the care I needed, just like she never did when I was younger, in and out of doctors’ offices, blood tests and brace fittings. She lifted, supported, fed me, fed my friends, gave me flowers when we found out the bone was healed, and bought me a badass pleather jacket to replace the one that was fraying. I swear she always knows what size to get.

De and Pas were both my primary caregivers for weeks. They took care of everything. I don’t even know half of what they did because I was hopped up on many opiates. But their kindness and solidarity got me through seriously challenging times, and their laughs and focus on daily dinners and playing songs and getting outside in the sun taught me the relief there is in daily activities with people you love.

My dad came to Quebec for the first time since the ‘70s to take care of me too, bringing Afrikaans cured meats and supplements. He pushed me around the streets, and surprised by how friendly all the gentlemen were in Montreal (in the village;)

Pascale’s mother hosted me and various family members for many weeks, feeding us and being patient.

Rosie spent her only week off over a two year period taking care of me, pushing my chair through the gnarled and rocky streets of Saint Henri.

Naike took me to a righteous Haitian voodoo concert and took me camping. Lucy blocked traffic on Atwater street, lent me pillows and an espresso machine for far too long, offered to stay with me, and kept my spirits up over shared spirits.

Nat took a surprise trip into town for brunch.

Lyssa clipped my toenails one day on that raunchy green couch, and it was the sweetest.

Brennan and Jesse came to visit, brought the kids, even with the business that having two young ones and busy lives brings.

Nic and Steph rode their bikes over to me at like 8 am to help me in the washroom, on several occasions, lifting me like it was nothing. And Steph lent me a bizarre games to play to keep my mind occupied. She made me a friendship bracelet that is still wrapped around my leg. And she laughed her ass off when she saw the photo of my croc in the metro reminding me its good to laugh at absurd situations.

Pauly helped me arrange much needed personal care, and scored me an amazing wheelchair through his contacts with all the right people.

Gifty came over to visit and develop a special bond with Klava the cat.

Julie came over to help me take evening pees, hung out with my dad, and brought her guitar. She and I sang songs even when I thought I really didn’t have it in me to sing. And it always made me feel better.

And about a million other people sent me thoughtful messages, called me up to see how I was doing, and offered support.

I want to say thank you to everyone who helped and supported me as my leg healed and to everyone who’s been there for me since, showing me alternatives to a rather oppressive social emphasis on walking, supporting my battles with the STM, coming together over politics and drinks. Travelling with me on the road to acceptance and defiance (of my body and the city, respectively).

You are awesome, like a big storm rolling in except its not destructive its protective.

As I sip celebratory red wine and express these personal thoughts for anyone who will read them I think about the challenges we’ve overcome together, and the challenges and uncertainty I’m still facing. Yes it’s been one hell of a year. Yes, I’m still standing. Yes I have a ride so I can sit. My bone healed and is stronger because of the break, and I’ll tell you, so am I.

Cheers mutherfuckers!image

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*dépaneur: a Quebec way of saying corner store. With liquor.

**Names:

Mom, Jo – parents

Lyssa, Deon, Brennan, Jesse, Pascale – siblings and sisters in law

Joe – an ex

Lady names – friends (my Montreal family)

J – My partner

Starting to think that an arthritis flare-up is not a bad thing: a time to eat junk food and get at editing and writing that has been piling up, stay in on a Friday night enshrined in a bed of pillows, and leave a path of garbage and laundry in my wake. Its basically like I’m part of the aristocracy.

Anti-inflammatories, inflammatory comments, and gym-going businessmen

I feel like I came back to sit in my apartment. Like all the freedom and beautiful things I experienced in the city by the sea got crushed under the forced and weary footsteps I took yesterday on a quest to find wheels. Like the cheap wine and post election revolutionary stirrings in the street were not worth the lack of mobility and freedom I am experiencing right now, in this moment. I haven’t felt this much physical pain since I left Edmonton and thought I could just go to the dog park and walk around with my Mum like I used to. Boots laced up tightly and dog drooling all over the beige spring earth. I was wrong.

And I was wrong to expect that the Rheumatologist I came back in time to see would have anything to say that I haven’t already heard: take anti-inflammatories, here’s a prescription, oh they hurt your stomach and you don’t want to damage your kidneys? Well take this other thing at the same time, so it counters the side effects. Its all about quality of life. You want to have a normal life right? Well, take these things and walk like I do until you can’t anymore. Then have your bones cut out and reconstructed and then walk around like I do some more.

I don’t like ableism, the idea that the definition of a good life is one that mirrors that of the normal, jogging businessman. The guy who lifts weights after driving to the gym. The kind of guy who carries all his grocery bags in one hand. Its oppressive. And he, incidentally, is also the type of guy who cuts you off in the grocery store because he’s in a rush to go home and grab his ergonomic shoes and extra breathing exercise clothes and make it to the gym tonight.

I don’t like ableism, the training and practice in medicine that aims at contorting you, your body, your reality to fit the norm. The medicine that makes you conform. The physio who says, I’m closing your file, you need to stop seeing me and get on with your life. As though doing exercises that strengthen me and make me feel balanced in my movements are a temporary, post-crisis experience; the time in a wheelchair a negative period in an otherwise bi-pedal, therefore, positive life.

I can’t sit, I can’t stand, when I lie down the nagging god damn pain makes my breathing short, my muscles contract, and makes me scowl. This is what I get from their normal.

Why should I struggle getting everywhere I go? To let doctors feel that they have succeeded? To make people in the public feel more comfortable with my body? To feel like I made it back to the enrobbing comfort of the false norm?

How about instead of me walking around just so I can get on the metro and hopefully have the mobility required to buy groceries, get fresh air, see things and get to a job, we just put elevators in the metro so that I can use some sort of wheeled vehicle to do the same stuff? I promise having crips in public places doesn’t contaminate the public experience. I promise we won’t roll over your toes or force our ways of being on you, like you have on us. I promise you’ll stop feeling so uncomfortable the more you see us in your spaces. I promise that diversity of existence is a positive thing.

Two unrelated experiences with elders since i got back to Mtl:

1. Yesterday i took a sunny walk to the grocery store at the end of block to buy eggs and rice cakes and tomatoes. It was an epic self brunch kind of afternoon. As I walked I stretched and did some leg lift exercises. Better out in the fresh air than inside. I was feeling good, happy that my leg didn’t feel too bad, that I was just strollin along without thinking about pain. As I raised my head from a particularly luxurious bend over stretch an oldish lady said, what’s wrong? Is it your back? I said no I’m just doing some exercises for my knee. Smiling. Not feeling annoyed yet. Then she reprimanded me for not taking a cane. Yes friends, she yelled at me: il faut prendre ta canne! Ta canne! And demonstrated what she meant by charade showing me an air cane. Then I went and bought groceries.

2. As I was coming out of Beaubien metro today on my way to a scooter rental place, with the hopes of driving one home, you know i don’t like to wait, an 80 something lady asked if she could help me as I heaved my bag over my shoulder after getting off the escalator. It was a long commute and one that I undertook planning to do one way, and with the promise of not walking much the next few days. I knew it would fuck my knee up. I said no thanks I’m ok. Then we struck up a conversation. She noticed I was an anglophone (speaking french) and asked where i was from, said i had a beautiful accent, to which i responded, that’s the first time anyone’s ever said that to me! She asked my what i ‘had’ and then we talked arthritis, anti-inflammatories and age non-expected body types, she expressed that she knew something wasn’t ‘normal’ when she saw such a young girl with a cane. I told her perhaps it was not normal for many but its very normal for me. She said i had a beautiful smile, and she supposed i couldn’t work given my ‘maladie’. So nice and sweet and discriminatory at the same time:/ She hugged me and said, tu es courageuse! (You’re courageous!) I said thank you and take care. We walked our separate ways. Slowly. With our canes. A normal interaction for an abnormal reason.

I’m on hold with transport adapté (para transit). It wasn’t that far I thought, going to IGA to buy kale and maybe a can of chick peas. I got halfway down the block, dropped my empty cloth bag, sat on the window ledge of a weird consignment store, looked at the moon, turned around, and went home. Too far. I’m going to have to find some mysterious reserves in my kitchen. And call TA for my appointment tomorrow that I was just going to take the bus to.

Its ok though, I have the ocean in my mind’s eye, that peaceful force that comes and goes and comes and goes no matter what the silly humans are doing. I’m going to get a scooter here and my life will completely change. I’m going to get one tomorrow. Forever. And drive wherever the fuuuuck I want. Forever.

And then I’ll say…
I’ll take care of you arthritis, I’ll love you with sugar instead of trying to shrivel you up with salt like slugs on a yuppy’s patio. I’ll love you til you’re no longer insecure and don’t feel the need to make your presence known. I’ll love you and keep you warm and oiled like a motor, not cut you out like some unwanted blemish on a skin-fascist’s face. I’ll love you til you get bored of me and move on. We’ll say goodbye one day, arthritis, until then I’ll be here, booking rides and eating freezer burned vegetables and old tofu, looking up scooters on my phone.

With the ocean in my mind’s eye.

Swimming and tired, but not tired of swimming

I just went for an amazing swim at a pool in Burnaby near my bro’s house.

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As I looked through the sun window in the ceiling, feeling my arms go higher and higher each stroke, and focusing on relaxing the tension stored in my muscles I remembered that I had written about swimming while I was in Edmonton, but hadn’t been sure if I wanted to post it. I wrote in a frustrated frame of mind and it deals with a personal struggle I am going through right now. I deliberated between thinking ‘that my business’, and saying to myself, ‘I’ve read some really personal things on tumblr that have shed light on my reality and have been like a reassuring hug by a stranger’, so I decided to share..

Swimming in the pool I used to swim in as a kid, the diagonal windows reflecting my arms-only stroke and spending more time in the hot tub than doing laps, the activity I used to be able to do for hours, it hit me: my bod aint like it used to be. I was operated on, casted, splinted physio’d OT’d in order to make me as mobile as possible. And I was, for less than ten years. I grew accustomed to, with a little bit of pushing, functioning just below the level of stamina and energy as an average ordinary. Hiking, cross trainer, standing up to cook. Tonight in that pool as my cardiovascular self craved the panting and exhilaration of lots of laps and fast, my muscles and joints said I don’t think so bucko. No rodeo for this cowgirl tonight.

It worries me that I can’t reach that level of exercise for my heart and mental well being. It worries and frustrates me that I can’t walk to where my cousins parked their truck let alone walk a few blocks to my friend’s house. That the ways I used to be present in this city are no longer a reality for me; rushing to bus stops, my feet my primary mode of transit, going up and down stairs for exercise, not gauging what to bring downstairs at my Mum’s house, my childhood home, because I don’t want to have to come back up. Like ever. It is a drastic change and not one I anticipated.

There is a medical narrative around arthrogryposis telling us from birth that it is not progressive, non degenerative. Well why am I so tired? Why was I climbing mountains and drinking my face off after high school graduation and preparing myself for the long walk across the stage at uni graduation? I’m only 26 I said to the lines in the ceiling as I arm-back-stroked my second and final lap. I’m not 85 fucking years old.

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Traveling with my feet up

Hey Underwater Creatures,

When planning my trip I wish I had taken into consideration the amount of time I have been resting my bod at home lately. Usually if I do something strenuous one day, I need a recoup day after to chill and do sitting things like writing or working on editing gigs or radio projects. Or listening to the radio. It works out pretty well. But while planning my time here in Edmonton I was kind of basing my activity level on how I used to operate when I traveled, which involved more walking and less resting.

Luckily I have gotten better at planning transit/ snagging rides, and have lovely friends and family here who like to transport me, so I certainly have not been stranded. But I feel a bit rushed in getting all that I would like to done here, meeting all the amazing queer crip-folk working to make E-town more accessible.

They have this fly dance party crew called Qmunity, who get together and dance and build community and be all hot. Next time I roll through I should certainly try and make one of these!!

Well, lessons learned. I have more time in Vancouver planned, and a scooter rental in the works, so I’m sure that will help. And then its joy-ride central. Yeeeee-Hhaaaawwww!!!!