#life of a spoonie
Surgery was yesterday. It all went really well. You can tell I’m good based on fact I’m posting the day *after*. & I’m doing really good w the hip recovery, but my heart rate & blood pressure keep dropping (possibly leftover reaction to anesthesia), so PT doesn’t wanna push me too hard for that reason, so I’m staying one more night. Mostly biggest issue is so sore from being stuck in bed. . Anybody wants to do something for me - Go Get Vaccinated! It’s my new love language. My meds suppress how many antibodies I can even make, but like the more ppl vaccinated, sooner we stamp this out & I ain’t gotta worry. Bc it sucks having to wear a mask 24/7 in here, even when I sleep. It’s required for staff, optional for patients, but last night I heard my roommate coughing, probably a post-surgery post-intubation cough, but I’m not taking any chances. So there’s that. Will try to update again on Saturday or Sunday, when I’ve been home a day or two.
In last 21hrs, I’ve slept 15hrs. Had a chaotic, exhausting but ultimately v nice weekend but damn, apparently I needed rest. Feeling pretty good now.
#DisabilityDayOfMourning Have you ever read a news story where a mother has killed her disabled or autistic child? Was it phrased as the mother being overwhelmed, at the end of her rope, out of options, didn’t know what else to do? Did you find yourself empathizing with her, feeling bad for her, hoping her life could find some peace? … You do know she’s a murderer, right? That the person you should feel bad for is the person she murdered? Yes, Murdered.
These news stories too often lean towards “that poor, poor mother” (or father, other family member or caregiver). They never seem to lean towards empathizing with the disabled person who was murdered. Why is that? Because disabled people are too often seen as “less than”, while the put-upon caregiver is not. Do I feel for the overwhelmed parent? Hell yes. Is the solution murder? Hell no. Does the disabled person ever get justice? Very, very rarely. Do we as a society learn from these events & start offering more services, money & help to both caregivers *and* disabled people? Very, very rarely. Should we do better? Yes. Can we do better? Yes.
In the name of all the disabled people who have been murdered by the very people who were meant to care for them…we can do better. And we should. #JusticeForTheDisabled
5hrs of D&D Friday, 3hrs of The Niece Saturday, 5 more hrs of D&D Sunday. I think I forgot I’m disabled & severely lacking in energy. Shit. But I remembered today. Holy hell, did I ever remember today.
Spoonie Problems: I feel like an ungrateful bitch when I complain about my caregivers, who are generally wonderful & family/friends doing it for free or for spit-pay from the government. My counselor always said I can be grateful & annoyed, that they aren’t mutually exclusive feelings…but I know if main caregiver heard me vent, they’d feel like it’s because they can’t do anything right, & they’d be hesitant about helping at all in the future with anything I don’t lay out specifically in detail for them bc ‘you get upset with me for trying to help sometimes’, & it would further their belief that I’m ‘always mad’ at them, which they told me once is how they feel. Like, I know they’re projecting their own issues, but when it’s a friend/family member, you have to maintain your familial relationship at the same time and Iike, that can be hard. Sometimes I think a professional caregiver would be better because then I could be firmer — not rude, but firmer — and not have to worry that’ll bring up issues because, like, oh their mom made them feel they were useless and me correcting them will trigger that. Because with a professional from an agency, I wouldn’t know about their mom or their triggers. But then I remember all the horror stories I’ve heard about caregivers and abuse, neglect, infantilism & ableism and like, I’m so grateful my caregivers all love & care about me. But still, sometimes I need to vent without being empathetic to their psychological upbringing. You know?
This post is brought to you by someone trying to help me with something I didn’t even ask for help with & then refusing to listen to what I’m saying the issue is & legit (non-violently) slapping my hand away multiple times when I point out the thing that’ll help them.
