My father once told me that he and my mother were not initially in agreement on having a third child. My question to him is this:: Did my mom want a third one because I was so damaged, had so many problems before the age of six that she thought I would die? Or was it that dad didn’t want to have a third child for the very same reasons? I am after all, eight years older than my sister. There was plenty of time to assess the situation and decide. Clearly, they loved her as much as myself and my brother...and the decision probably had nothing to do with me. Still, one wonders.
And assessing it wasn’t just about my NF (then called Von Recklinghausen disorder). It was about the scarlet fever that almost killed me, the mumps, measles and every other childhood disease, in me, 10 times worse. I wouldn’t be surprise if they had a plot picked out for me. On the other hand, my mother always said of my scarlet fever “The doctor’s said it was mother’s love that saved you” She’d tell me this whenever we fought. And I always said the same thing: “Thanks a heap, mom…shoulda let me die”
Tonight I’m missing yet another family gathering, this one to celebrate Passover, and it popped in my head so I’m writing about it. I’m thinking about my disorder, my anger at it and what it has done to me and the anger at myself for not being able to let go of all the things I’m angry about. Hell, I’m even angry that I’m angry. And the pain, the numbness and all other systems get worse when I’m angry. So might as well address it, Smart, eh?
I have always written. From as far back as I can remember. I’ve always read, too. Under the covers with Poe and a flashlight at age 10. I remember a line in some poem I wrote at about that age. It was raining, and I couldn’t go out with my friends. I wrote something about “G-d’s tears on the Pane” (window pane). I didn’t know what double entendre was, but I wrote one. Kind of.. And since then, there has been nothing but pain. And not the glass in the window frame kind.
So how do I get to the anger? Can’t ask my dad the question I posed: he will either lie or say he doesn’t remember because he won’t want to hurt me. I never knew there was a question until tonight, when I started thinking about my week, how hard it was physically.
I went to DSHS and had them help me through the application process, then drove around for an hour, collecting what they needed; copies of things I didn’t have, like bank statements, utility invoices, pharmaceutical costs, etc. I have little hope of getting any more help, as they have tightened up their rules and I have “too much” money (it shows a balance of $2,000 but that’s before I start paying this months bills….which they don’t ask about).
I hope to G-d I die before I need Medicaid. I don’t want to go on welfare, which is what it is. And I certainly don’t want to end up in a state run facility….with Medicaid, you go where there is an opening…it could be close by so my friends can visit, or it could be on the other side of the mountains. Not gonna happen. I won’t let it.
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