A Continued Difficulty of Being

Maybe some people just aren’t meant for any ease at all, for real happiness.

Life after my mother’s recent death has been somehow both easier and more tormented than I had expected. I haven’t ceased functioning in the wake of her loss, even though with her gone, the one who was keeping my elderly father anchored at all in reality, I feel quite a lot like I’ve lost both my parents.

It’s hard to explain, since losing one’s parents is agony for most if not all, in its own various ways. But for an autistic person…we depend on our parents in an, I think, unique way. When they’re gone, we’re alone in a way that I don’t think neurotypical people experience, except maybe if they’re young and still dependent on them.

To be honest, my parents, though they loved me deeply and probably did their best, weren’t that good at being stable influences and providers. My early youth, later youth, and much of adulthood was traumatic, painted in my memories with brushstrokes of so much screaming and anger. My mother said horrible things to me, and my dear, kind father spent so many years being pushed down by her, he became…I don’t know. Weak? Broken? Certainly incapable of protecting us from her, though he tried.

And still…feeling the loss of them now makes me feel so untethered. It’s sort of silly, as I have three sisters that are fiercely protective of me and will always, always be there for me. I cling to the idea of them like a scared child squeezing a favorite plushie, but with that there is always guilt that they worry about me, that maybe they feel the burden of me, though I know they’d never say it.

On top of everything else, the rheumatoid arthritis I suffer from seems to be getting worse. Some days, my strong pain medication barely makes a dent, and I find myself taking too much, and running out early, and in case you’re wondering, I wouldn’t wish withdrawal on Hitler. I want to ask for help managing my medications correctly, but don’t know how without losing the trust of my pain management specialist, which would break my heart, as she’s been so kind to me. I’ve quoted Jean Cocteau on this blog before, “Je sens une difficulté d’etre,” I feel a difficulty of being. How funny, in a horrible way, that I finally decided I want to live, I finally have a stable, safe, better-than-ever home life, and overall, I don’t really feel better.