I used to take my pain and fear and feelings too primal to name lest they grow down to a wind whipped ocean and howl into it. You get an answer of sorts if you stand just right. You felt alive and this brought relief once.
I cannot get to the ocean now and the tears I wind up crying when I think of how many people have had to decide to do basically nothing to ensure I survive are not do to the familiar contempt for my autistic life. Or my poor life, my odd life, my seemingly useless life to those who judge but because it is such invisible pain and invisible fear.
I don’t want to die of an intensive neglect that should be impossible but I suspect it happens a lot.
I don’t want to die because I am seen as someone it is safe to ignore. I have no parents. I have no children. I do not have a primary claim on the heart of anyone. I know how when I have gone to appointments with a friend that alters how you are treated. You are seen as someone who people care about.
To have zero services and have the person who was supposed to fix one of them be the log jam in ever having help again should not be possible.
I know they cannot be aware of how horrible life lived so utterly alone becomes. The 6 days of trying without success to get fully into bed. My dog is a genius at ensuring he gets his needs met and then I return to the same level of stuck.
My good computer was a casualty of my over the bed table breaking and thus some avenues of escape are less possible. The big issue though is that it had three non-working keys so I could not get stuck in non-productive typing on it. The 6000 word emails I never send or the blog posts of pure nonsense. I typed for a week straight and my hands were discoloured and swollen but with nothing or more specifically no one to break the pattern on I go.
I used to be good at what they call “switching attention” and I hope when or if things ever stabilize I will regain some of that ability. I know the role having seen a person plays as for just awhile I can focus long enough to do something needed.
I miss a mythical pair of parents I guess. While in the last years of her life my mother was more understanding and accepting my father was not. That is when it was just him and I phoned because it was one of the days he would shower and he called back to say he was out of the shower – a system necessary because in some decision makers mind the elderly need just two a week. If he thought to comment on my life it was with impatience given I was not senile it was my not remembering to eat he took issue with when he did . Most of the time it was short this seconnd call that signalled he was alive. A system to ensure he had the dignity of being as clean as he had been when my mother lived.
A system he was fairly compliant with for reasons I understand as it is a life-ending fall I fear most of the times . Sometimes lately I wonder if it would not be a mercy for me to die in the exact way you do learn to fear if you are alone and fall a lot.
I had a bath last week. It was momentous and dangerous but when your feet and lower legs have been colonized by a bacteria despite your supposed eligibility for home-support that never re-materialized and you reek of things you should not well eventually you have had enough.
In the process I did fall three times. The stepping motion is on where my legs sometimes give out. One was just into the tub itself. The kind of fall I regard as a good fall. It is a sad system where one grades them but the other two were the bad kinds. Or the semi-bad kinds as it is the counter-top that is right beside the tub that could end me and twice I had a near brush with not keeping my head from hitting it.
After though, I could not help but wish it had been that easy. My head smashed in. Dead because I wanted the dignity of not smelling of urine and worse. Of not having feet that were in worse condition than a street person’s as they have foot clinics for street people. Just finally free of this invisible, tortured life.
Although the difficulties exist because of autism plus physical issues it is not autism that makes me wish I had died from trying to have a bath. I want to be clear on that. It is the many members of the “system” who have jobs which are meant to prevent the many worst case scenarios I represent.
My housing. Not just an issue due to accessibility features which are not here but because my landlord scoffs at notions of building codes so rats can fall from the upstairs, through yellow resin insulation coated in dust, through electric wires and down here. The drywall to cover it is in the closet with the water heater but the make shift wiring and plumbing make that impossible.
I do try to not think of the substantial increase to lung cancer risk from this exposure but my asthma and my dust allergies make the bathroom a hard place to use.
Almost 6 years ago appropriate housing was the “powers that be” number one priority with adequate pain control a close second. One wonders if life would have improved had they been lower on the priority list.
I have joke I am a hermit but mostly all of this just makes me feel more alone than I thought possible. Each passing day that intensifies. The fear does too but mostly it is a sad, sad way to live.