Day 12 on Xolair. I did something today I haven’t done in 17 years. I pumped my own gas. I need to give a little context, and so I need to talk about the #Neuropsychiatric effects of #MastCellDisease, including #ChronicSpontaneousUrticaria - which is often #Autoimmune. **

[CW: #OCD, compulsions, rituals, automotive/accident trauma]

I’ve had my license since I was 16, but haven’t always had my own car. In 2008, I borrowed my sister’s car a few times, the same 1990 red Corolla that had been passed down to her from our mom. **

In 2008, I’d already had some issues with compulsions/rituals that had started a couple years prior, very suddenly. In November 2006, I started suddenly running manual anti-virus scans on my computer every single day. Not surprisingly, also when I started having POTS symptoms. **

I’d had intrusive thoughts, feelings of my brain being on fire. I’d started waking up in the night w/ my legs itching itching itching. There were times I couldn’t sleep and I’d call my mom (she’d retired and moved away for the winters) and be sobbing about my brain/skin on fire. **

But in 2008, when I borrowed the car, I had been filling up the gas tank on my own, no problem. Except for one day, when I did and the pump malfunctioned. Fuel spilled down the side of the car and my shoes. I panicked. The attendant wasn’t allowed to leave the store to help me. **

And then my brain did a click. Itchy itchy itchy. Since that day, I had only ever filled up my gas tank at TWO places that do full-serve (it’s the law in the next city). All my trips and gas-tank plans were about filling up there. Because if I did NOT, something BAD WOULD HAPPEN. **

What you need to know is that I live beside a gas station. I do not have to go far to fill up my car. But no. For 17 years I have driven at several kilometers to do this, or on the way out of town (on the other side). **

The only time I didn’t was ONCE when I lived in Ontario, and I HAD to fill up a rental car with my roommate, but I was not alone that time. So that was an exception. I wasn’t alone. And I had no problem with someone else filling up my car (always my sister M.) **

But when I tell you that I had truly distressing thoughts and a THING that I could not do for 17 years because if I thought about doing it differently it made my brain itchy - I also had become so ritualized and rigid in so many other ways as my brain became more inflamed... **

But today I just got in my car after a workout, went to the gas station almost without thinking b/c it HAD to get done today (I have to drive tomorrow), and it wasn’t until I had paid for the fuel and had the pump in the tank that I realized I had done it. This ordinary thing. **

I need to tell you that my brain had become so so so inflamed and itchy that I tried to decline (I SENT AN EMAIL to withdraw!) my PhD acceptance because the prospect of figuring out how to transit out to UBC from the suburbs suddenly filled me with fear. **

How I could not navigate, I mean, even go into, the library at UBC until someone went in with me. And even then I went in there twice. In the past years, the more treatment I have, the better my brain gets. **

I can be spontaneous not just because I have steadily increasing physical capacity but because the bees and the fire in my brain that made me so rigid for so long is starting to be quieter. I rarely flinch at anything now (physically). **

In Sept., quite impromptu, I joined friends at a rave in a warehouse (masked, of course.) I had never been out dancing at night in my entire life, because I started to get sick right when I became old enough to go out. It was thrilling (dance/house/trance are my fave genres). **

But to break a pattern of behaviour I’ve had for 17 years? That felt like it would never not be a part of me? Because those bees felt so loud?

I called my sister this afternoon, clutching the receipt from the gas station. I cried because it was so ordinary. **

All I have ever wanted since I got sick was to get back all the ordinary things. It’s not just the physical things. The neuropsychiatric effects of autoimmune disease have been among the most disabling for me. The bees, as I call them, the kindling fire of their hive... **

...if I had known at 18, 19 what that was, if I’d known how to express that to anyone, if anyone had had the diagnostic know-how to put the pieces together. So much would have been different. If someone had understood what I meant when I said my brain was itchy, on fire. **

I’ll keep the receipt, I think. Just as a reminder. Of what can be. **

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More from @luminousmethods

Mar 31

Another day, another viral essay on Instagram about how “women’s rage” is behind their autoimmune illnesses. There are so many “nervous system influencers” right now who are making bank off of how we need to regulate, heal and manage our rage. Who the fuck benefits, I ask?

Yeah, stop suppressing your rage, but don’t actually express it AT anyone. All the vagus nerve grifters (not the actual researchers into the vagus-immune reflex) are just waiting to send memes or get us humming or cold plunging or co-regulating or reading confessional essays.

I thought we were done with the “you have a personality type that causes your illness” thing with breast cancer, 50 years ago. We’re not, though, because Bessel van der Kolk and Gabor Maté’s books are selling like HOT CAKES. Everyone is keeping that score with their body-ody-ody!

Read 17 tweets

Oct 7, 2024

[CW: psychologization of illness] . . . I need y’all to know how dangerous this can be. When I was in The Dark Room & ended up in ER in Feb 2022 with untreated pain from chronic migraine/POTS/etc that was so bad my BP was 170/105, they did not give me a beta-blocker right away.

Instead they made me talk to a social worker for a fucking hour and only then at the end of hours in an ER did they send me home with a script for a beta-blocker. They did not even treat my clearly measurable and very dangerous symptom b/c my old neuro was on call that day.

We keep seeing people with ME/CFS be psychologized and institutionalized against their will and I can tell you that it happens very easily. I have had terrifying experiences in my early 20s (onset of POTS, of course) and again in 2022. With measurable symptoms. Clear etiologies.

Read 9 tweets

Oct 3, 2024

All I can think about when people are like “I just don’t want to wear a mask, it’s just so hard, I dunno, it’s weird” is the entire village of Eyam in Derbyshire, who in 1665 totally quarantined themselves to prevent the spread of plague that had come up from London

And a third of the village died, like this was extremely fucking awful, but you know what, the plague didn’t spread. The entire village sacrificed an awful lot to make sure that the plague was contained, so like, don’t tell me we can’t do better in the year 2024

People from outside the town brought them supplies and they left money through the wall that they left disinfected in vinegar. We are talking serious shit here. Just wear your masks at events, at the grocery store, whatever. It’s not that hard. OKAY. HISTORICALLY SPEAKING ffs

Read 5 tweets

Feb 22, 2024

I am collecting medical records from my specialists so that I can send them to a specialist in the United States who can put all the specialist pieces together and it’s just like...wow the things you find in your notes that get sent to your GP that your GP should have read

and then treated you for, but then you know, who reads the notes that get faxed and put in your file I guess, silly me, I should have been the one to follow up, it’s my fault, it’s always my fault

should have been treated for a significant case of hyperadrenergic POTS, well, you know, when POTS was diagnosed by my cardiologist in 2016, but when my geneticist wrote the subtype he suspected in 2020 oh well I just went untreated some more until my nervous system exploded

Read 17 tweets

Aug 10, 2022

When my psychologist and I were talking about grieving my brain injury and my old academic life, my lost career, he asked me what age I was I knew when I wanted to be an academic, and what age I was when I knew I wanted to be an artist. An academic? I don’t think I ever knew.

I was 22 when I started my PhD and didn’t know anything about academia. I was really good at it. But being good at something isn’t the same as really wanting to do it. An artist? I wanted to be an artist my life, as soon as I started drawing and painting and inventing worlds.

“Is the scholarly life completely lost, though?” he asked. No. Maybe not. I engage with text and theory through my art now. That’s how I think through and think with. And maybe that’s...maybe that’s it. It’s not lost, just transformed.

Read 4 tweets

Aug 10, 2022

Up early to attend the doctoral defense of the wondrous @socialart_gen, whose dissertation project “Art/Re-search (T)here” first brought together a group of scholar-artists in 2018, to think and get lost together through arts-based research.

@socialart_gen It has been an incredible four years of collaboration and thinking-together, through mail art, presentations, and collective poetry. Geneviève’s creative stewardship first held space for my arts-based research when I didn’t even know I needed it. I am so happy for this day!

It has been an honour to be a co-conspirator on this project. To think, to get lost, to create, to assemble, to disassemble.

Read 4 tweets