hello dear readers, glad to have you back!
so, uh,
i've had a bit of a wild ride over the last 5 or so months.
on one hot summer day in July, i had several seizures in a row and wound up in the hospital. i'd never had any seizures before or since then. the cause? i was feeling extra dysphoric that day and took some nearly-expired estradiol that i had stashed in my room. just like i said would be a dangerous thing to do in my last post about this[1]. some of the tumors in my brain didn't like that because certain sex hormones tell them to grow. one thing led to another and we ended up surgically removing the largest tumor near my frontal lobe a few weeks later at the Mayo Clinic.
i don't want to understate the gravity of this situation; it was scary as fuck. i'm lucky to have gotten the care that i did and i feel extremely fortunate in the position of being able to tell you about it, so i'm trying to do my best.
it's come with a host of issues for sure; brain surgery can be hard to recover from in many unexpected ways. my episodic memory, which was already declining, is significantly worse than before; in my case i'm constantly feeling like certain things had already happened despite assurance that they hadn't, like when i'm interacting with friends or when i watch a video that was just posted hours ago.
i've never been more aware of my mortality, but i consider it a good thing because now i feel even more appreciative of this life that i have. it's also awoken the anarcho-syndicalist in me (i mean, among other current events doing that too) and i think i'm back to my freshman-in-college-who-just-discovered-breadtube levels of radicalization.
let's talk about gender stuff
at this point my gender identity is intertwined with my physical condition. i'm non-binary because one part of me (my Self) rejects masculinity, and another part of me (my body) rejects femininity, so we make a compromise. (gee, i feel like this could be explored more in like, a plural kind of way.)
there are things about my current form that give me dysphoria (both in the gender way and general displeasure) such as my voice, stature, and my partially-paralyzed face. the right side of my face got a bit weaker after this last surgery, because the tumor was under my forehead to the right so they peeled the skin back and scraped some of the muscle away to access it.
since my surgery i've been recovering steadily. i'm really putting my all into bettering my health, physically, mentally, and genderly, by contacting the right professionals and working within this fucked up system we in the US call "health care". i want to keep on living. i want to be my authentic self. so i keep on trying like there's no other option.
since my diagnosis, i'd only ever been seeing two kinds of doctors:
- oncologists who specialize in taking care of my tumors
- endocrinologists who i've specifically sought out for hormone replacement therapy.
after my seizures, i knew regular checkups would be good for me so i found an incredible primary care doctor who is there to take care of me, the person. it seems obvious to me now, but it's something that i was lacking for a long time. this doctor has dialed in my cocktail of prescription medications including increased spironolactone, which has raised my E levels enough to a healthy range that i can live with.
i've also been doing therapy, and i get medicinal weed now. it's great.
disability justice
this past year or so i've been trying to read more books. i bought a little e-reader last winter and have been making my way through enlightening and radicalizing works, such as The Future is Disabled by Leah Lakshmi Piepzna-Samarasinha. i am (and i think many, many others are) tired of the "normal" way of the world that pushes disabled folks into the margins. what resonated with me the most are the many ways disability and queerness intersect, which didn't really occur to me until reading it.
my interpretation of Leah's work is that if you're queer, disabled, racialized, or marginalized in other ways, we are stronger together by having solidarity, building community, and using mutual aid. we don't have to suffer in silence, harmed by a broken system.
say it with me now:
it's okay to be disabled.
it's okay to need help.
we are worthy of comfort, love, and joy.
it will get better.