documenting disintegration - hello darkness, my old friend

02.03.2023 - 1:56PM - somewhere in WA state 

last week, i woke up to another twinge in my left thumb.

i don't know what hurts more—the actual burning pain of losing muscle as it disintegrates or the fact that it's such a seemingly minor muscle in a limb i use daily, understanding that the impact will be irreparable.

i know what's coming.

and it's not one of those "oh, you're not losing yourself, you're just changing, and you'll bounce back" moments, either. this isn't the time for well-intentioned platitudes. while i acknowledge that both of those things can be true and are true, i Am Also Losing Myself, one twinge at a time & it kind of sucks.

mourning parts of yourself while you're still alive is a surreal experience.

i've tried to give a smaller fuck about it. i've tried to give no fucks about it. i'll say "c'est la vie, oh well" and "it's totally fine" & "no worries!" even when it's not totally fine and in fact, i have so many worries. i have so. many. worries. suppressing these feelings is only causing them to grow bigger. & grief? it can be explosive. i'm doing myself a disservice by avoiding it.

i pride myself in being fairly ambidextrous, but the reality is it was born from compensation as my dominant right side lost strength over time. every time i tell myself, "oh, i just want to see if i can," i know it's cautionary speak for "i'm testing this out to see whether or not it'll work out in the event that i need to modify preexisting methods when the time comes." not “if”, “when.” don't worry about me, though. what doesn't kill me gives me a new topic to discuss with my therapist. i'll use my dark sense of humour as a coping mechanism, and we'll laugh about how well-adjusted i am to the absence of being.

and it's true what they say about how the human body is way more resilient than we give it credit for. how for millennia, we've evolved and adapted to survive. we gain from our losses, but how often do we speak to the loss while it's happening?

metamorphosis isn't a pretty process. yet despite its bilious nature, most of the time, it just wants to be seen.

i was once asked if i tend to track my progression in any formal capacity, and if so, how and why? do i see doctors or specialists on a regular basis to check in with the state of my being? do i have yearly chats with a medical team where we discuss how to move forward? how do i know when it's time to talk to someone? how do i know when it's gotten bad again? is there such a thing as “too much” when it comes to needing help?

yes, i do track my progression. i track it through photographs and poetry, writings and illustrations where i am able to separate my mind from my body in order to see things from a distance. the point of disconnection is where i'm able to connect with myself most effectively. i think, as a creative, this act of photographing, creating, editing, and distorting is my attempt at self-preservation. as if to say, "look. i cannot make you understand how this loss feels, but i can show you what i see. this is what keeps me up at night--this is what it feels like to atomize."

you can’t substantiate this kind of loss in numbers, charts, or graphs. the baseline for procedural strength tests was written by white male doctors, and i have never been scientifically quantifiable by those standards. 

i don't see doctors or a medical team on a yearly or regular basis. i don't check in with a team of medical professionals to discuss my physical health and how i might move forward when everything feels as though it's falling backwards. i did that. i ran that route until i no longer could. i won't get into "why" right now—that's a story for another time. 

the photographs tell me when it's gotten bad again--when they become zoomed-out point-of-view shots i don't remember snapping. when "grief" and "loss" pop up in my poems at 2am. when the google search histories bring up locations of specialists in the area and “best in the nation”. when the notes i find scribbled after therapy indicate that i should maybe try to deal with it & talk to someone. 

but i won't. i don’t want to name the grief. if i name the grief, i acknowledge that it’s happening. if i acknowledge that it’s happening, i have to acknowledge that it’s happening to Me. the weight of shame sits heavy on the tip of my tongue. i close my mouth. 

some things are simply easier shown than spoken out loud. 

my therapist suggests that i ought to explore this more in-depth. aren’t i, though? i'm documenting disintegration.