Pink Liv

This move has been rough on me as a high supports needs physically disabled person, mentally, in all the typical ways, and physically, like getting run over by thirteen trains and beaten while I'm already down. I graduated college which is an incredible feat that I cannot fucking believe I accomplished. As I sit here in my bed now, I cannot fathom how a little over a month ago I was taking finals. I feel like shit right now and it feels like magic that I ever got that degree, and of course it was some fate---things working out in the right ways at the right times---but it was also a lot of fucking work. If I had needed to spend even one more year on my degree, I probably wouldn't have been able to get it, but I did, and I graduated in the top 10% of my class, and although graduating, in and of itself is an amazing feat, I am especially proud of my performance as someone who seriously considered dropping out 3 times due to illness.

Anyway though, it has been rough. I sat in my powerchair for like eight hours on the day of move out which was like being tortured, burning pain searing my occipital lobe and my body failing to hold up my head despite the many supports in my wheelchair. At one point, I transferred to a wooden bench just to feel how people feel when they lay on the ground, and it wreaked havoc on many a joint of mine, but being in my wheelchair had become such agony, I was desperate to lie down because even full tilt and recline had begun to hurt. Then, at 1 AM I had an autistic meltdown before riding in the car for three hours en route to a new city. I arrived in so much pain I was swearing and groaning and so tense that I thought I was going to bite a hole into my lip, but I got to a place that doesn't yet feel like home, got into my new hospital-style bed and fell the fuck asleep. I thought the pain would subside in a matter of days, as per usual, but instead it sent me into a severe pain crisis, warranting my admission to the hospital. They changed my pain meds and gave me some IV meds, and I thought I was set, and I have been, to an extent, besides this godforsaken (spinal?) headache and bladder pain that have been plaguing me with greater magnitude and frequency than my baseline. I've been weaker and because of the move have missed one of my treatments for over a month and it's been rough.

However, there is good news because like Mitski says in one of her new songs, maybe in a new city you can start over, and although this is not my intention socially, it, to an extent, is my intention medically and care-work-wise. In moving from a small state that's almost 100% rural to an actual city has so far proven good for my wellbeing and it seems like it will continue to be. I finally won't have to depend on any informal caregiving, having all of my care through care workers through organizations or private caregivers. No more asking my friends to clean my biohazard-adjacent room every couple of weeks because I can barely drive my powerchair through the piles of clothes and trash anymore; no more hoping one load of laundry lasts for a fucking month; no more going commando because I just don't have any clean underwear; no more sheets that turn brown, not just from period blood, but from not being washed in a year; no more living somewhere that is considered an occupational hazard to my caregivers, while simultaneously being unable to qualify for further care; and no more feeling like I cannot survive without being some sort of inconvenient burden because of a significant lack of structure to my care.

So no, this move has not been easy. I miss my friends like all hell, and I feel so sad when I hear a song that feels like it belongs in my friend's car's stereo. I feel alone and like I don't know how I'll make friends here because there's no classes (that I skip half of) in which to meet them. I have seen quite a few doctors already, including one who didn't believe in my disorder, saying he thinks I didn't have it, despite surgical and pathological evidence contrary to his beliefs. But. I've seen quite a few good doctors, including one resident who was one of the less than five doctors in my whole life to make me feel like a person and not just some clinical object. It is 3 AM and I'm awake still so clearly not everything is worked out with my meds or my life or my longing yet, and my mom is still here for a few more days (after a few weeks of her staying with me) until my official caregivers can take over. I still need to start my SSDI application, but technically (kinda) I live alone or I will, even if that entails someone else cooking, cleaning, and shopping for me as well as bathing, dressing, and grooming me. Things will work out and they already have even though they are confusing.

So yes, I may sit here in my hospital-style profiling bed with my neck in a bit of traction from the way I'm sitting to help me feel better than I did the rest of the day, and yes, I may have a new lower baseline from this move, and yes my life right now is a lot of sitting in bed (even more so than it already was), but life is confusing and good and has things in store for me and you and us. I have a degree and amazing friends and a confusing (but not all bad) relationship with my parents, and I am making different decisions than many of my peers these days (one of whom is walking across Spain in El Camino, which is absolutely unfathomable to me), but decisions nevertheless.

I am nonbinary, and it is hard balance being misgendered in medical settings to avoid discrimination and alienating myself from my sense of self entirely, and I am disabled and it is hard to balance pushing myself a little bit to live my life and risking permanent damage to my health. But. Life is full of risk and heartbreak and change and so even though much of the time it does not fucking feel good, it is still beautiful and it is still mine. The other day I was writhing in agony in the ER, and part of me, even in the throes of feeling almost as bad as can be, still wanted to live. And it was so beautiful to realize that because life has tried so so hard to harden me, and in some ways it has succeeded, and to remain soft in that moment felt like a victory that 1000 different versions of me had fought for.