My dark, dark mood yesterday was directly connected to being tired and also being in pain. But it felt like my whole world was crashing down.
I get caught up in a lot of emotions that can be directly tracked back to how I’m feeling physically. This happens to me a lot — always has — and now that I know a name for getting confused about emotions (alexithymia), perhaps I need to just check myself, anytime I’m convinced it’s all hopeless and there’s no use to anything… and not wallow in something that actually isn’t there.
That’s not to say that I’m not feeling genuine emotions. I’ve been getting increasingly angry about my life spent struggling with so many things, with so little understanding, so little support. If anything, it was the opposite — being punished and bullied and mistreated and literally pushed and pulled around because nobody understood what my issues really were.
All the name-calling, all the ignorance… all the aggressive ignorance.
And the lost opportunities, the missed chances. The activities I passed up because they were more than I could handle socially and sensorily. The competitions I deliberately lost, because winning would have meant getting noticed and being at the center of everyone’s attention, where I would probably make a fool of myself. It’s easier to have a small class of schoolmates laugh at you, than an auditorium full of people. The jobs I didn’t go after. The promising academic career I abandoned, because I got my social cues mixed up with the wrong guy who turned into a stalker… and then lived in hiding for years, terrified to leave the house from when I was 21 till I was nearly 25. All the social “deals” I made, just to feel safe and protected. The ill-fated marriage to that man, the series of low-level jobs I’ve taken just to have a job that didn’t tax me too much and wear me out and put me in danger of screwing everything up.
These “films” keep playing in the back of my head, about how things were in the past, how much difficulty and struggle there was. And there’s a “voiceover” that keeps telling me, “It would have been better, had people known it was Aspergers, not you being stupid / defiant / lazy / impertinent / oppositional / etc.”
Of course, looking back on the 1960s, 70s, 80s, and then into the 90s and 00s, there’s absolutely no guarantee that any increased awareness of Aspergers would have made a damn’ bit of difference with me.
Even today, when so much more is known than even 10 years ago, prejudice and oversimplification rule the day, especially with regard to organizations that purport to “advocate” for us and “support” us. The whole Autism scene in the US is a shitshow, to put it lightly. And none of the people slinging it seem to much give one single shit about how much it’s hurting the people they claim to be “helping”. There’s still talk about finding a “cure” to ensure autistic people cease to exist. There’s still autism-hostile propaganda being published by Rolling Stone and other mainstream outlets that proclaim what a terrible, terrible tragedy it is that autism even exists.
We have a long, long way to go. And that makes me angry, too.
But I can’t just let it take over my life. Something’s got to be done with all this energy. I realized this last night, as I lay in bed and wept with frustration and feelings of isolation… and the thought occurred to me that, as bad as I may have it — have had it in the past — there are many, many others who have it so much worse than I. I was weeping in a bed of my own, in a bedroom with an air conditioner, in a house I own (well, technically am paying for each month), located in a good neighborhood, with a long-term life partner watching the political theater downstairs in our living room. For all my bitter sense of isolation, there I was, living well, with my belly full from a nice dinner only a few hours before.
I’ve been through some very tough times and close calls, and I’m not going to make light of them because of my ethnic and socioeconomic status. To do that would erase some of the truth of what my life has actually been like as an undiagnosed Aspie with a number of other chronic health conditions that have screwed me up over the years.
I have to be true to my life experience. And I also need to put that in a larger context that shows me that I’m NOT alone, I’m NOT being picked on, that as challenging as my situation may be, there are so, so, so many others who are struggling as much — and more — just as regularly and just as hopelessly as I have over the course of my life.
So, it makes no sense for me to let my anger and/or alexithymia get the better of me. Without discounting my own issues, I can use the immense energy that builds up behind my challenges, to do something that might — just might — be of use to others.
There are many things I cannot do. Diving into political activism, actions, marching, networking, drumming up support, calling people on the phone, and doing all those high-energy, high-endurance types of things that go with agitating for change… that’s much more than I can safely manage.
But there are many things I can do. I can write. I can send letters. I can connect online. I can tell stories about being human. And I can network indirectly through the written word. I can also “signal boost” the people who are doing the hard work that I cannot. Because the world needs to know what good is being done in the world by people who are deeply committed to making positive change.
So, what to do…? I have to watch my energy. It’s easy for me to overwork, overstep my bounds, and knock myself out of commission. I have yet to master my “flow”. But I can start somewhere – where I am. With what matters to me, which often seems to matter to others, as well. I have some ideas. I just need to follow through with them.
And I need to get some support for myself. I’ve got my list of potential therapists who may be able to help me with my Aspie issues. I’ll start calling around today and see what I can come up with. Just to get moving. Just to get moving in the right direction — any direction, really.
It’s all an adventure.
And I’m not one to sit on the sidelines. Not when I can do something. Anything.