Old song, but it hit me where I live…. The quote is from “Angry Anymore,” by Ani Difranco:
she taught me how to wage cold war with quiet charm
but I just want to walk through my life unarmed
to accept and just get by like my father learned to do
but without all the acceptance and getting by that got my father through
My parents had different reactions to divorce because their approaches to life were very different to begin with. My mother ran our family with an iron fist, because my dad was the talent and she was the manager. She was a preacher’s wife, charged with fixing every single thing that went wrong in his life or she had failed him personally and professionally no matter what my dad thought because the preacher’s wife role is cultural. I have never seen any women take more professional heat in our conference than wives that wanted their own jobs and their own lives outside the Methodist church. This is slowly changing, of course, but I was born in 1977.
My mother was the platonic ideal of “preacher’s wife,” but she had an image for our family and could be punishing when we did not meet her expectations. We all handled this in different ways. I decided just not to talk to my mother about anything real. We’d fill our days with surface talk and that would just have to be okay…. I could have my own life. I lived over a thousand miles away.
But I failed before I was born with my mother. I was born with cerebral palsy, and my mother did not like the idea of having a “special kid.” Even though none of us knew that CP and autism have a large Venn diagram, CP alone should have been enough to set off alarm bells. The problem was that back then, my formal diagnosis was “hypotonia.” The reality is that was the doctors’ first impression, and my mother would not take me back for follow-up. She said that my dad was overreacting, and that leg exercises at home were enough. She did not think I needed special education because I was too bright, etc.
So, basically every choice she made for me as a baby is wreaking ABSOLUTE HAVOC now…… because what we know now that we didn’t then is that intelligence is no indication of support needs. Now, every missed intervention is a support need I have to navigate alone.
My father does not want me to be alone, he just has his hands tied. Texas does not offer Medicaid expansion, and I do not have disability benefits yet. Once I achieve disability benefits, I can think about Texas again because Medicaid is open to disabled people there, just not everyone. But honestly, I am past thinking about moving back to Texas because while I love my family, I don’t love the state wholeheartedly. It rattles my nervous system because getting by there is based on masking.
I don’t have to “get by” anymore because I am more powerful when I don’t have to mask at all. My mother taught me how to behave socially, but it was like training a poodle. The poodle is absolutely not interested in your nonsense…. and neither was an INFJ autistic toddler.
I am surprised that my first words weren’t something like, “I’m already older than you.”
It’s not arrogance. It’s seeing clearly that in a lot of ways, 10yo is older than me. They know how to get by because they’re being raised by modern autistic kid parenting and I absolutely was not. I cannot even believe how much my childhood would have been improved if Texas has a virtual academy where I could do school from my bedroom with my laptop. They don’t have to get by because their nervous system was never overloaded in the first place.
It’s seeing all the errors of my mother’s ways and forgiving her, but not forgetting. She chose her image over my safety, and that will never be okay. She fought with my father constantly over how disabled I was without ever letting a doctor tell her she was wrong. Dead wrong. Disastrously, enormously, wrong.
But you forgive when you realize she was a baby herself when I was born, younger than Ayalla by almost three years. I was an idiot at 25. Mostly, forgiving her is for me. If I had realized the magnitude of what had been done to me, all the gaslighting, it would have caused a rupture. It just didn’t, because she hid all the paperwork from the one clinic she took me to and my sister found it after she died. But that document is what establishes disability starting in 1978, and not whatever it is that people are saying.
The real truth is that I have a solid case for disability without doing a lick of research. My documented paperwork for mental health issues already makes me eligible. Right now, it’s choosing which programs to apply for. I believe that I qualify for SSI and SSDI, as well as my father’s social security survivor benefits. None of my health issues started in adulthood. I cycle too rapidly for bipolar, but autism meltdown and burnout are right on schedule and look the same, often, to clinicians.
So, the first step for my disability case is a full neurological workup, because everything that’s wrong with my body starts in my brain, too. My life should have looked different because it has been too hard for my neurotype. I need support and now I’ll be able to get it.
I have also mentioned moving to Baltimore to Tiina. I’m not just talking crazy. Disability laws are better here, and that’s my only point. I am starting to think about long-term stability, and Virginia is not it. I don’t want to give up my own benefits for Tiina and Brian, so the best choice for now is just to keep driving to see each other. I don’t mind moving to the Maryland side of DC so that we can be closer, but Virginia is an “absolutely not.”
What ends up happening is that I spend maybe four or five days a week in Maryland.
It is not that you cannot get disability in Virginia, it is just much, much harder. There are programs for Tiina’s kids that do not exist anywhere in the nation, and by “kids” I mean Pepper, the kid who just turned into an adult weeks ago, and her minor brother, who will be an adult in two years. Tiina heard me, so it’s tabled. I don’t have to bring things up again with Tiina. If she’s thinking seriously about it, she’ll circle back on her own. But our lives look different now, and disability support is important to both of us and not just for the kids’ sake.
I also feel lonely walking around Pikesville without her. No, seriously. Baltimore has one of the largest Jewish populations on the east coast and Pikesville is the hub. So naturally, when I’m walking around my neighborhood I wish I had someone to say things like, “where did you get that kippah?” I am never sure I am saying it right. I took a chance at Rita’s Italian Ice and now I know what Trace is getting for Hannukah if he doesn’t have one already.
Suede toddler kippahs are perfect because they don’t slide around (it’s the thing that keeps little boys’ heads covered at synagogue). I am not Jewish, but I want our grandson to have the best of the best. It’s a joke that’s not really a joke because I’m not a biological grandparent. I’m being folded into this family, so even though Ayalla is not related to me, I am very much involved in this baby’s life. I also don’t want to ask Tiina for her knowledge on anything and everything Jewish, amen.
Google is free.
My life is all about letting go of what happened to me as a baby so I can just chill now. I have a framework and a focus- a creative partner and a whole family that loves me.
…..without the need any longer to focus on The Cold War.
Stories That Are All True 