“This is what disability advocates have said all along, not that it usually sinks in: The able and the disabled aren’t two different kinds of people but the same people at different times.” - @tomscocca.bsky.social
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I know first hand your life can change overnight. I thought mine was essentially over, but had a miracle, most do not. And mine is only temporary of course, sooner or later I'll be considered and effectively be disabled again. In the meantime I am trying to smell all the roses I can.
As a nurse doing end of life care, I beat this drum for years. And then, ironically, became disabled myself. Disability is not if, it is when. Maybe temporary, maybe chronic, maybe terminal. Odds are you will experience more than one on that list. Eventually we will all need help wiping our butts.
And, if you do not have a clear, definative diagnosis (or have one that is astoundingly obscure) clearly you are just a hypocondriac looking to mooch and need a good, hard, boot to the ass to make you return to work again.
Well, I mean, you totally had to have been exaggerating the effects of your wierdo-made-up-totally-fake medical condition, because he's watched TV medical dramas and knows how these things present.
For anyone unfamiliar w disability, reading this man's story will enlighten.
When *you* decide that you are disabled you cross a threshold mentally, into a realm only vaguely known through the illness, then death of loved ones.
Of my own disability I will say this: it's better than the alternative.
The alternative to living with disability is, *not living.*
Disabilities make you feel as if you're not alive; you scare people, remind them of death and disease.
Having never been able-bodied, I have sympathy for folks newly experiencing disability.
Everyone: Discard your internalized ableism.
If you don't discard your ableism you could end up like me.
Most of us pretend to be like you.
Since I was a wee girl, my interpretation of the world differed from most others.You made no sense to me! Also, physically I was taxed all the time, slept a lot! Easy looking back to see a disabled child.
I have familiarity w the feeling of impending death for the first time in your life. I was 38, had 2 young kids, when I first faced my own death. I became an adult overnight. Our friend had stayed healthy/unconditioned until midlife.
*Noticed in the author photo, swollen sausage* fingers like mine.
What a chilling story. Makes a reader wonder what this type of experience is like for people who have even fewer intellectual and financial resources. I hope for a positive update from @tomscocca.bsky.social soon.
A good quote. As a Borreliosis "survivor" I really have to say though;
Nobody knows "if" you have Lyme aka Borreliosis. The antibodies can be negative months after your (often unnoticed!) tick bite and suddenly it actives and wrecks you, like me, with only an expensive LTT test showing any traces.
One thing that makes it likely enough for smart docs to recommend an LTT is a weird allergy-like reaction to alcohol + a symptom pattern that is multi-systemic. But you can never rule it out for sure sure. It’s like when you get long covid and you’ve missed the antibody test time window - no proof.
Comments
When *you* decide that you are disabled you cross a threshold mentally, into a realm only vaguely known through the illness, then death of loved ones.
Of my own disability I will say this: it's better than the alternative.
Disabilities make you feel as if you're not alive; you scare people, remind them of death and disease.
Having never been able-bodied, I have sympathy for folks newly experiencing disability.
Everyone: Discard your internalized ableism.
Most of us pretend to be like you.
Since I was a wee girl, my interpretation of the world differed from most others.You made no sense to me! Also, physically I was taxed all the time, slept a lot! Easy looking back to see a disabled child.
*Noticed in the author photo, swollen sausage* fingers like mine.
We need to fix our minds about broken bodies.
Our humanity demands it. ♥️
Great writing
Nobody knows "if" you have Lyme aka Borreliosis. The antibodies can be negative months after your (often unnoticed!) tick bite and suddenly it actives and wrecks you, like me, with only an expensive LTT test showing any traces.