Steady, as she goes

To contextualize what I’ve been battling these past few months, I guess you’d have to know how bad things can get. Neglect, illness, physical and mental deterioration, and suicide attempts.

I’m an adult autistic who wants to live independently. I’m walking on a high wire without a safety net. I do it well enough to make most people around me think I’m capable and just a little lazy and ditzy when really it takes all my faculties to operate at this level.

Having anemia and depression and autistic burnout on top of other physical health issues is enough for anyone to find overwhelming. I’ve had to advocate for myself over and over, sometimes pushing personal relationships. Sometimes just posting blood test results on Facebook and crowdsourcing for solutions.

I’ve been doing this on Medicaid. It’s been a full time job taking care of myself. Many times the examinations have been extremely painful even after the medical professionals claimed they wouldn’t be. I faced them alone. I came home alone. I had to feed myself, dress myself, shower, etc. That on top of memory loss, skill loss, financial strains, and trying to maintain friendships only made life harder.

But to the medical establishment my problems weren’t a big deal. They fundamentally don’t understand autism and how bad things can get. They don’t know what it takes to function at the level of neurotypicals.

I look normal. I speak well. I make eye contact. I’m intelligent. But that doesn’t mean I can take care of myself. I don’t know who could have helped. I don’t think the system has people to help people like me. But it should. There’s a huge gap in care.

During this time, I’ve gone without food, without medicine. I’ve burned myself. I’ve forgotten to take out tampons, diva cups. I’ve lost things. Dates have passed. I’ve broken down more times than I can count.

But I also gave a talk to Amazon. I cut Emily’s hair. I helped J through his legal issues. And Mikey with his dad’s eulogy. Taught people about autism and Covid. Taught myself about enough medical issues to be dangerous. Survived in NYC.

It’s amazing how much of me I lost in the past six months. It should be just as amazing that I came out the other end.

If what I’m learning could help others have more compassionate care and a kinder world, I’ll do whatever it takes to make that happen. Maybe that’s apparently what I’m here for this time around. That’s what gets me through when things get too hard and feel like just too much.

Because otherwise it’s just me on my bed alone, trying not to cry, wondering what the hell I’m going to do with the rest of my life. Intuitively it doesn’t feel like that’s the case.

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