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.

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.

[CW: psychologization of illness]
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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.

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

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

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.

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!

I've decided to simply start a #TodaysBrainFog master thread, to hold everything together (one of the only things I can hold together these days!) I'll re-post everything I've written so far, and continue on with it from here out. #TodaysBrainFog is like an unmixed jar of organic peanut butter.

I realized tonight that a lot of my anxiety about things eventually changing is that while I'll be so thrilled to do things again, and to see people, that I also live with the dread (and the reality) of how chronic illness will also continue to make me either unreliable or sick. I desperately want to be better, completely better, so that when the pandemic abates, I can be fully in the world again in all the ways I want to be. But I can't have that. I don't get to have that, at least not for a while (like waiting for surgery), maybe not ever?

Realizing in conversation today that while I have very valid reasons for not wanting to be in academia, that part of my "hahaha fuck this" attitude is because it's too hard to imagine continuing my work while also living with disability/illness, so I just gave up entirely, OH NO Realizing that I should have fought to take a break when I hit my head and ended up with a debilitating neck and head injury, but instead kept going because of fears of precarity and "staying competitive" and then fizzled out entirely, OH NO

I can't sleep. I've been thinking on how long I've gone without timely or proper medical care, and how waiting for treatments even now has put me into a mindset where I just shut down emotionally because I can't hope for things to be better. Including the pandemic. Some of my family members are partially or fully vaccinated, and I still don't believe I'll ever get vaccinated, because I know better than to hope for things. Even though I've registered. Even though I know the vaccines are rolling out and my age group will come up eventually.

Just lying here thinking about how when I watched Little Women for the first time, it was before the pandemic, and I cried so much when Beth worried about everyone leaving her because she had to stay home sick and her sisters got married/moved away. Just thinking about her. Jo March writes this poem about Beth (entitled "My Beth") which has a line talks about her "cheerful, uncomplaining spirit / its the prison-house of pain" LOL

It’s so baffling to hear things about how pandemic measures are for us to “save our summer” (leisure travel! Air BnB bookings!) not like, you know, saving fucking lives right now. I am having a bad health week and I’m truly full of absolute rage at the moment It’s like last fall when we heard “well everyone needed a break in the summer and now we have to get back to trying to deal with this.” As if everyone had “a summer.” As if some people haven’t been sheltering in place for 14 months.

I took my car for a short drive before stopping in at the big box store whose pharmacy I still use and I got so nervously shaky about both the driving and the being in the world that I had to come home before running my other errand, love what this pandemic has done to me (I am still re-learning to be comfortable with driving after brain injury stuff and it's still not my most favourite thing, even though it used to be something I did quite often with no problem. And big box stores still make me feel disoriented in a way that small stores don't.)

UBC's response to the Chauvin verdict makes me tired in my bones. Y'all can't even just say Black people, but lead with "People of Colour and people of good will and decency." (Is that supposed to mean "white people who ain't the bad ones, we promise!")

antiracism.ubc.ca/2021/04/20/sta… I do not have good will and decency towards terribly-written institutional responses to the ongoing murder of Black people. Not, and I quote from this letter, "Black and brown bodies."

Unsolicited tomato update (I know, I know): I learned enough last night to identify the suckers and sun leaves on my plants so I could properly prune the plants as they go through this intense growth with the heat we're having. I learned a thing and then I applied my knowledge! One of my favourite things as a kid was listening to the noon show here in British Columbia when Brian Minter (a master gardener) would answer listener questions about everything garden-related. It's a vivid, lifelong memory, hearing someone helping others tend to living things.

As I staked the soil for the peas this afternoon, I thought about how staking in academia is so often about defensiveness, about occupation. Staking a claim as a settler-colonial act. What if staking could be about offering support for growth? Affixing gently, proximity. Not cages to limit growth, but frameworks and structures of support. Trellises that can accommodate flourishing, even excess, such glorious excess.

Me: "I can't focus on trauma theory and memory studies! I must have a problem with focusing on anything."

Also me: *spends a whole day making art and has no problem focusing on typography lectures*

Maybe the problem is trying to write and think about trauma and violence! OH NO It's like I think I'm supposed to just be able to keep doing that kind of intellectual and emotional work in the same way as I used to? In THIS pandemic? When I don't even work in academia anymore?

This is the seventh Friday in a row in which I have listened to John Coltrane's Blue Train album and today the theme of my listening practice is breath. The breath of Coltrane on sax, Lee Morgan on trumpet, Curtis Fuller on trombone. It makes me wonder, too, about the cadences of breath for the musicians not on reed/wind instruments: Kenny Drew on piano, Paul Chambers on bass, Philly Joe Jones on drums. The pace of some of the tracks on this album is...breathless! But also so FULL of breath.

Doing my taxes and thinking about money in terms of underemployment and chronic illness (I have never been able to work full-time) and wasted, low-paying years in academia makes me feel many feelings, all of which are very, very bad. I am so tired of doctor's appointments and intake forms that are all about making sure I can work. More work. always work. Getting work so I can afford treatments I absolutely can't afford because I do not have full-time work and/or benefits. I'm...I'm so tired.

I'm returning to some of the texts that I first considered when I first learned to write as a "scholar" (however one wants to define that), and so much of that is also about revisiting the deep and lasting harm of the very early and formative "mentorship" I had from white women I am looking at some of the earliest work I ever produced. I am tracing my citational practices - down to the very first epigraph I ever chose - as a way of understanding this harm, and seeing moments where my hesitancy to write otherwise was really a fear of losing mentorship.