Pain turning into a bedfellow was not on my annual agenda.
Turns out: best-laid plans turn to shit when you’re disabled. That’s okay though, from what I’ve learned from others before me. Pivot and reframe, because that’s all I can do to survive capitalism. I often wish I could be born in a more able body, but I’d miss the insights I’ve gleaned from all this lived experience. Because I have the support of family and loved ones, I’m afforded the luxury of focusing on rest, recuperation and recovery (whatever that looks like.) It’s clear that I was running on empty, but with all the slowing down, my mind now keeps bouncing off the walls.
With many chronic diseases: there is no cure. Patients (such as myself) are supposed to manage their symptoms and disease to keep them at bay. Many of us keep slaying the dragon, only to find out that it has the power of stealth. Oh, did they mention the dragon was also immortal? No? Well, good luck with that. Morale is low, but so are the stakes. With ease and intention, I find myself more sensitive to many things. For instance, exercise is now at the whims of my menstrual cycle and social settings centre around my home. I wear down to a frazzle.
I felt the strains from other aspects of my life, but the news that one of my medications is on the FDA list of nationwide drug shortages fucking broke me. Capitalism strikes again, with the demand for off-label usage (no thanks to Kelly Osbourne’s oblivious comments) for those who can afford the drug. And if it wasn’t enough, people are dying not only in Gaza, but Rafah. I fucking hate that I can’t write anything other than that because I’m still trying to fill my own cup. I want to chuck my devices out of my window— but as someone who can’t exist in isolation, I need to keep them around.
Today’s newsletter was supposed to be about how rest involves play, but I can’t do it. Maybe another day. I think that it would be appropriate if we all just took this moment to scream (however you want to—)
AASDGAWEGAWEGAWEHAWEHAEWHAEWGJAIWOEGJIAOWEHGIAWEHIOAEWHGIOAWEHGIOAWEHGIOAWEHGOIAWEHGIOAWEHGIOAWEHGIOAWEGIOAWEGAAAAAAGHKWGWIENGAIWEGHIOAWEHGOIAWEHGIAWWAEIHNAWHINAWEHNAWIOEHNAEOWIHNAWIOEHNAIWEBHAWEBHAWEBHIOAWEBHIOAWENHIAWNDBKMASDL<GMXZ><CBKAWENHIWHEOIYEWHIAWEHBAWEBHAWEBHIAWHIOAWEBHIOWABEHaaaaaAaassSdDsDtYjJnHgfDsAaaassSuUuGggHhHhHhHAAAAAAAAUUUUUGGGHHHHHHHHHHHHAAAAAAAAAaaaaaaaaaAAaahahahahHAHaHhHHHHHHHHHHHH
AAAAAAAAAAAAAAA
AAAAAAAAA
AAA
AA
A
a
!
Shake it out.
Did that feel good? No? Try it again. Feel it in your bones and let out the most guttural yell you built up inside of you. Let it go. Repeat until you feel satisfied or until you can’t scream anymore because you’re too busy losing your voice after unleashing the flood. Onto the internet. Like I am now.
And then sleep. Tomorrow is a new day. Will it bring the same set of fresh horrors as today’s? Maybe. But the knowledge of having shared a unified scream of abject horror into the void helps me persist.
(I hope it does for you too.)
PS. If you like my work, please consider paying for a subscription as a means for support. Sharing with your friends and on socials is also helpful for me! Thank you.
PPS. You can also reply to this email and tell me what your thoughts were. How were your screams into the void? How did they sound? I love receiving emails from subscribers and often respond. Please consider emailing me.
🤣