Disability, in my case, works better alone.

Being disabled because of chronic illness makes your life a conditional experience. I’d love to make plans, to promise I’ll be places to do things, but I just don’t feel it’s polite for me to do so.
Will I feel ok on the day?
Will I have energy?
Will I have to take one of my rescue meds, which can make me sleepy and loopy, unable to drive and interact?
Will I be recovering from a previous episode?
Will I even be able to participate fully, given the accomodations I make for my physical state?
Financial complexity: I’m broke as a joke, loves. Do I have the $ to enjoy fripperies like fun time?
Do I even deserve to enjoy myself, without a job, without income?

All of these things complicate my ability to make plans. And I was raised very much in the school of “keep your promises, even if it injures you” – so it’s just easier to not make promises.

This has left me isolated, unsure of my welcome in public places, and unsure of how much I’m allowed to participate in our society as a non-productive non-worker. And the inner dialogue is made much, MUCH more nasty by listening to popular culture.

America is a culture of judgy fucks. I’ll say it. We are absolutely capable of being self-righteous dicks, and we feel like that demonstrates moral rectitude. If someone is able to participate in the rites and sacrifices of modern life, they’re lauded as morally better than those of us who, through no fault of our own, can’t participate. There’s definitely a very Victorian-era connection between productivity, attractiveness, and morality.

If you’re pretty well inside the lines of what is “acceptable”, you can literally get away with murder as long as you choose the correct target (ie, someone further downstream than you – someone who is less useful to capitalism). If you’re outside the lines, you can’t exist without people telling you you’re taking up too much space, wanting too much, somehow *stealing* from the rest of society. (Which is lunacy, because society is what’s stealing from us right now. But that’s another post. Life in our culture right now asks much much more than it gives; and I think participating in such a system is nuts. However, I didn’t see that until my illnesses pushed me slowly out of that “standard” box and into the bewildering and thorny world of disability.)

So… do I want to go to dinner with you? Yeah, that sounds like fun! Will I make it to dinner? Probably not. I have the senses of a canary in a coal mine, and anything that rocks my world makes me constrict and shrink into my safe cocoon.

But let me be very honest with you: It can be soooooo boring here. And sad. And lonely. But
it’s safe.

And to me, that’s the most important thing. Keeping safe and staving off inevitable pain in my body, while also honoring promises as much as possible.

It’s not perfect, but it’s what I’ve got figured out right now. And that is good enough for horseshoes and jazz. Or something like that. 😀