Born again human

this is me trying to be honest, trying to be me.

i generally only use lower case, because i don’t have confidence to shout. (except at myself when i have a meltdown).

my meltdowns are almost always internalised, i’ll cry messy, sloppy tears instead of shouting.

i spent the first 53 years of my life thinking i had a pathetic, man child temper. but that i was mostly a good person. but my whole world drastically changed in the last 5 years.

lockdown shut me out of the world, because i worked in a clinical post in a large city centre teaching hospital, and about 25 years ago i was diagnosed with a thing called sarcoidosis, it’s not quite autoimmune, but it’s similar, it’s similar to a million other things, it’s killed great people, it hasn’t killed me, just ruined my mind and my body, and my career. anyway, it meant i wasn’t allowed to work, luckily i was in the great british nhs, so i was still paid, but i wasn’t allowed out the door, my partner at the time was, and still is a nurse, so she made sure i stayed indoors. she had seen what covid di to people, i hadn’t yet, but soon would.

i was lonely, i felt a fraud, but at least i could be useful in the house, cooking, laundry, ironing, all the therapeutic jobs.

after first lockdown, i was allowed back to work, shortly after which, i had my first ever hospital admission, it was terrifying, suddenly, out of nowhere i couldn’t breathe, genuinely thought i’m dying, 999 and an ambulance ride to hospital. my first experience of real fear of dying, of missing my children and my lover, we’d been a couple since october 93, 7 weeks after i left ireland with everything i owned in a back pack, having never lived alone in my life. we fell in love like lightning, we just happened one night and i never left, we got engaged next new year, never got married too much trouble with families in different countries, and irish catholic expectations. 3 kids, growing into amazing adults, a lot of issues and tissues along the way, but that’s for another day.

in the next 3 years i had about 7 or 8 admissions, usually pneumonia, different microscopic villains each time, damn sarcoidosis got me on pills to stop my immune system, ended up day before christmas eve ’23, blue lighted in with the worst chest i’d ever had, needed ketamine just to make it onto the ambulance, ended up induced coma on a ventilator, with all the hallucinations and subsequent ptsd, shit, i’m still having flashbacks, i can still see and feel myself getting shot and kicked into a shallow grave, maybe i’ll elaborate another day.

i’m rambling, i do, i circle around thoughts and repeat myself far too much for most peoples patience, i’m learning it’s to be expected with late diagnosed autistic people, but it’s a hell of a lonely learning journey.

recovery took nearly 3 years just to be able to wash myself again, so i’m sat at home in the chair known as “cripple corner”, the beautiful woman who showed me what 2 bodies in love can do, was now washing her naked, steroid bloated, wheezy, dysmorphic man, fuck me, she even had to make me coffee and toast, i couldn’t stand long enough.

i sat day after day, night after night, trying to live, and sleep in cripple corner, did i mention by now i’m almost completely deaf, got a couple of aids, but lost the right one, how? when i don’t leave the chair, probably fell out and was eaten by henry the vacuum, but i’m afraid to suggest that. forgot to tell ya, i’ve got raging rsd, that’s rejection sensitive disphoria, common with neurodivergence, and people who’ve had ptsd or c-ptsd, y’know, just hear a slight change in her tone, and you expect to be dumped, or knifed.

so this deaf lonely dysmorphic cripple watching his lover and kids live, laugh love, and get out of the house for nights out, days out, weekends away, and i can’t piss without a walking stick, and 3 rests before i reach the downstairs 20 stepa away toilet.

one blessing of lockdown, was internet shopping, so i was on my phone and 20 minutes later, the nice minimum wage guy was handing me a whoosh bag including a half bottle of own label scotch. i never learned to drive, i can’t leave the house, my kids are adults, so i figured i wasn’t hurting anyone, but turns out, they all talked behind my back to mother, who would tell me it was bad, and wrong, and unfair to the kids and to her, and i’d cry because i was a cripple, not able to live the lives they could, how nobody even visited me, my only friends were mutual, except as i later was told, they were her friends, not mine, i just assumed, in perfect autistic style, that they were my friends, when they were just being polite to their friends’ partner.

i drank out of loneliness, they called a meeting on the family whatsapp, so i found out they were really upset by my drinking, so i just stopped, i spoke to my gp, i sought help from local drug and alcohol team, and i stipped, luckily i didn’t have any withdrawal, i staooped july last year, and have not even sipped a drop since then, and it’s now may 20th.

but it didn’t matter, 4 weeks after i stopped, while still having to help me wash, she told me we were over, and there was no room for discussion, and no chance whatsoever of getting back together, so i had a break down, complete mental implosion, it’s how i figured out i’m likely autistic as i had massive meltdown when they all went out one morning in the car my disability pays for, and left me alone, the 2nd that door shut, i bawled my hear out, i was lost. there followed far too many samaritans calls, and every other help line known to man, including emergency mental health who wanted an ambulance to take me to emergency department because they thought i was a danger to myself.

i was, i still am, i’ve learned that my drinking was damage limitation, it’s regulation, it’s typical neurodivergent harm reduction behaviour. I’m no longer drinking, but i’ve bought myself a metal ruler that stings just right.

it hurts more because since last july i’ve been on miraculous injections once a month that have eased my lung inflammation enough that i can shower, (first time in 3 years), i can cook again.

it doesn’t matter because i’m still deaf and alone, but i’ll tell you more another day.