Thread by @luminousmethods

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.