oh my heart it breaks every step that i take

I got a letter in the mail. It said I “meet the program’s definition of disability,” and “We have not scheduled another review of your disability at this time.” No apologies, no thank you for your time, no sorry if we led you to believe you might die this Summer. No award, no medal. I’d barely been breathing for months. I thought the worst things were going to happen. The review process in itself is traumatizing. (It’ll be a zine one day. It’s a long, fucking complicated story.)

During the second 90-day review process, I thought I’d get this letter at the last minute, the end of Summer; I thought I’d be denied. I thought I’d be in court. I thought I’d be evicted again. But the letter arrived within three weeks of my forms being received. I think it was delivered that day because I was wearing my dollar-sign tights, trying to conjure luck.


[image: my legs in the grass, dollar-signs printed on my black tights, cane resting by my side, purple lipstick smeared on the lid of the first Starbucks drink I’ve had for nearly a year.]

The next day, I took a long walk along Queen West. I could only walk – with breaks – for this length of time because of a painkiller prescribed to somebody else, kindly shared with me. I hadn’t been inside a thrift store since last Summer, and it was one of the little things I’d missed the most. Searching for dresses with pockets, dresses that fit my flat chest and wide hips. I ambled slowly, but less grouchy than usual.

At Black Market, T. Rex was playing. Always a good sign. I named my zine after a T. Rex song when I was seventeen. Black Market was one of the first places I went to when I visited the city as a “grown-up.” If ever I fell down their dark staircase and smashed my skull against the concrete floor, I’d probably die happy. I stole a lot of clothes that day, but I paid for my Black Market finds. When I left, I think I had one of my first experiences of someone getting out of my way on the stairs and telling their friends to do the same.


[image: my hand holding onto a paperbag full o’ meds. The bag says, “Talk with your pharmacist about your care!” And has an illustration of bottles and bottles of spilled pills.]

On my way home, a man approached me and asked if I’d like to buy comics from him for $1. He was carrying a bundle of zines. I bought a zine. I wasn’t sure if it’d be anything I was into (I was afraid I was being tricked into buying something misogynist and creepy and gross), but I want to live in a world where somebody can bring their zines to Queen West and sell them for $1 on a Tuesday afternoon, so I bought one.

When I googled his name at home, the first (and second and third and…) link that came up was not for a comic artist, but for Lana Del Rey. I have a limited data plan, so after having temporarily uninstalled my Twitter app yet again (this is something I do semi-regularly), I was able to allow myself to get sucked into a Lana Del Rey YouTube vortex for a couple hours. I am notoriously behind on music. Somehow, for lotsa reasons, I stopped getting interested in new music before I quit drinking half a decade ago, stopped going to many shows, stopped buying albums, blah blah, and it has often made me sad to think that I might never find another artist whose songs make me cry, or make me wanna listen to a song on repeat, or make me feel anything at all. But Lana Del Rey! My wish came true.


[image: beach sand, a tree, a swan swimming by, lake stretching out beyond the horizon / on another unplanned city magic walk, I went to the beach and saw my first swans of the season. I sat in the sand for six hours and read an entire book (I Await the Devil’s Coming by Mary MacLane).]

Later, of course, all the stolen clothes made me sad when I realized that they will mostly only be seen by medical professionals, who often imply that I am too well-dressed to be as sick as I say I am. And the I-still-have-an-income-&-a-home high wore off, and the I’m-still-sick low returned. I started going to AA again. I usually can’t go because I get sick, because the metal folding chairs hurt too much, because I can’t breathe through cigarette smoke to get through the door, because transit is a mess. But I’ve felt lonely and restless, and I really really really want(ed) to drink. It happens every late-Spring / early-Summer. Because I can’t go as often as I’d like to, people often mistake me for a newcomer. I celebrated five years sober in April.

Last night, I had plans to go to another meeting. I booked WheelTrans a week in advance. They were supposed to pick me up at 7:20. I went outside at 7PM and sat by my door, waiting, reading (A Safe Girl to Love by Casey Plett). Sometimes they show up early. Sometimes they show up late. You never know. They were late. The last time a ride was twenty minutes late, I called four different numbers but couldn’t get through to a human. Last night’s ride arrived at 7:55. Thirty-five minutes late. The meeting began at 8. There was no point in going anymore.

This is one of the many ways disabled and chronically ill people are prevented from participating in our own communities. When the driver showed up, I added him to my long list of strangers I’ve cried in front of recently. I told him I didn’t need the ride anymore. (I also shouted, “FUCK. FUCK,” in the middle of the road and kicked my toes into the pavement because this is sometimes how I respond to trying to exist, to plans thwarted once again. I also bashed my wrist against my brick wall again and again.)

I canceled the ride home, too, of course. I don’t know if WheelTrans keeps a record of how many times they arrive too late to get somebody to their destination at all, but what they do keep a record of is how many rides a passenger misses, how many rides a passenger cancels. You can only do this a small amount of times each month before you’re cut off. So these two rides are on my file, points against me. After I canceled my ride home, I regretted it. Sometimes, for no-shows, the driver goes into the building and calls your name to see if anybody has seen you. The moment I pressed the ‘cancel’ button, I thought, No. I want you to go into that fucking church and shout my name so that anybody who’s still there has to know I still exist, has to know I tried to get to that fucking meeting in that fucking basement and was thwarted by inaccessibility once again. I want my lack of presence to fucking haunt them.


[image: A square-shaped bottle of Saint Dymphna oil in my hand.]

When I came back inside, I received an automated phone call from a hospital, reminding me of an MRI I’m supposed to have this weekend. I didn’t know I had an appointment, but I did know I was placed on a waitlist last Winter. I called them this morning. They said they mailed me a letter in March but I never received it. MRI’s are performed 24/7, and my appointment is at 11:45 at night. So I burst into tears again! If I don’t take my meds, which knock me out, by 10:30, I get fucking sick. But if I rescheduled, they wouldn’t be able to get me in ‘til October or November. So I’ll be at the hospital on Saturday night. And my doctor says, if it’s “just fibromyalgia,” like all the other ultrasounds and x-rays and everything, it’s not gonna show anything. I’m on five or six waitlists for headaches, chronic pain, and trauma, but my name won’t come up on any of them ‘til at least next year.

And today I woke up in too much pain to walk to the bathroom without crying.

Hauntingly Yours,

P.S.: If you’ve benefited from my writing in any way – if my words have inspired you, helped you feel less alone, or sparked some weird feeling within you; if you’ve felt encouraged, or curious, or comforted – please consider compensating me by offering a donation of any amount. Whether you’ve been reading my writing for years, or just stumbled into me this afternoon, I invite you to help me sustain the process!

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