My sister yelled at me today:
"You want to be treated like an invalid, like a, a, disabled person. I'm not going to, you're not a disabled person."
I am a disabled person. I screamed it down the phone at her:
"I am a disabled person."
But no, apparently I'm not disabled because I walked in town last weekend. This 'miracle' proves that I am not disabled. Forget the fact that I was in bed for several days after, and went straight into a wisdom tooth infection.
Oh, and my eyes burn too brightly these days, apparently. My sister said in our 'conversation' if it can be called that, that when we met up one time recently my eyes were burning at her like I wanted every word I said to be hung on.
Yes, that is true. My eyes burn this brightly in rage against what I am going through. Yes, I want my every word to be heard. Wouldn't anyone who has experienced wholesale rejection by everyone they once loved? I am so thankful I can say "Except my son." But what a weight on his shoulders. Wouldn't any human being imprisoned and beset by daily bodily tempests, ignored, rejected and isolated, burn too brightly. What was it Dylan Thomas wrote?
"Rage, rage against the dying of the light".
But that is not what I rage at, actually. My Dad did, when he was dying, but I rage at the fact that what I am going through is being treated as a death. I am not dying, and the light is still on!
Hellooooooooooooooooooo, I am still alive people!
Stop burying me.
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6 comments:
I'm so sorry, Seahorse. You know such comments are far more to do with power than what your sister really thinks - they are unanswerable, unjustifiable. She wouldn't actually assert that someone who doesn't look sick can't be sick. Or that someone who is sick can't have good days and bad days. But she can jab you with such comments and if you protest, well there's no need to be so defensive...
I hope your relationship with your sister will improve, but sounds like just now she is poking you for the sake of it, out of her own frustration I daresay. "Your eyes burn too brightly" is like something a villain says of the heroine in a bad romantic novel.
The word verification says "boing" which I take to be the sound a spring makes. Hope that's portentous.
Thank you Goldfish. I hate Christmas. Next year my son will be old enough to have all this explained to him. It will be interesting to see who he wants to spend his time with. Fortunately I already know the answer to that one.
Oh Seahorse, I'm so sorry. To be treated so unfairly by those we love is the REAL burden of having a disability. I often think that if I could just make other people understand then I could cope with just about anything else.
Please know that there are some of us who do understand, and who are thinking of you right this minute.
Sometimes it seems like we're damned if we do and damned if we don't. If we remind people we are disabled we are whining, looking for special treatment. If we say nothing we are martyrs, not REALLY disabled, etc etc.
I lost a lot of long time friends when I became disabled and family began to treat me differently. They quit asking how I was because they didn't really want to know.
What I learned was people who love us and have trouble with how our bodies work when we become disabled is that when they stuff like your sister did, they are really reflecting their own feelings.
It's not that you are expecting those things, it's that she feels she has to do that and she she's pissed off about it. For some people it's easier to project than to address our real feelings and cope with them.
It has little to do with you and everything to do with your sister, hon. Hang in there.
nte thank you. It's such a relief to get some understanding from somewhere!
Krishanna hi there! I really appreciated the thought that went into your comment, thank you ever so much. It has helped.
Goldfish, I was still hugely incensed (which makes me sound like a large josstick) when I wrote your reply the other day. Now I am deep and crisp and after posting my carol, even, and I can really see the sense in what you write. Thank you.
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