Miracles…

November 9, 2006 at 8:24 PM (Uncategorized) ()

We can argue about:

Why medicine is *never* a magic bullet.

Why the cured/tragic victim/overcomer frame permits societies to look at people *with* impairments as not an actual person, but rather a representation of that impairment (or “Look how *well* you do at minimizing that impairment! How *nice* for you!’)…It’s a mental *easy* way out not to take the extra moment to understand that we are people first, and our differences have varying degrees of impact, or *none* on how we handle our lives.

I’ve just gotten over another illusion, that if a medicine works well when you first take it, well enough to mitigate your impairments for enough time to have no dread or fear of humiliation when leaving home, that you can return to work, that you can garner a bit of the good of the money and the respect…that it will continue to do so… No sorry, a few months of that is all she wrote…I see it as another smack on my nose with a rolled up newspaper by a universe that is trying to tell me that medical or technological help can *alter, slow, or stop* at any time, so that I need to take things a step further in the process of ‘de medicalization’ of my impairments and viscerally *get* that the rest of the treacherous rollercoaster ride of midlife and old age will just be a continuous loop of adaptation….*just like the rest of them.*

Well damn. Isn’t *that* an anvil dropping. The able have to pull the exact same adaptation riff as they age. It’s a matter of degree, certainly, but you either adapt or you automatically decide that since you can’t do what you did one, five, ten, twenty, years ago that there is not any fun left, and become, as a consequence NO FUN AT ALL.

Another question though…are the short breaks you get when a medicine is efficacious worthwhile…? that I have a different answer to…and again that answer comes from personal experience so…

It’s 1991.. Tiffany, my cousin that felt more like a sister, called me on the phone. I remember, we had possibly the most surreal conversation I have *ever* had with anyone, before or since…

I’m angsting. It’s the very very early days of my bout with cancer, and I have to go around telling people, calling them up, or just taking the easy way out and tell them when they call me. Also, my spouse was in the middle of his HIV disease and so, there was *that…*

I’m no patient overcomer when bad stuff hits. I freely admit I’ve got to bitch and whine about it to get it dealt with…also to counter the Jungian notion that one’s *perception* of events is really all that matters.

Um, bullsh!t. Some things are just universally agreed upon as being *bad.*

Me: At least forty minutes worth of “oh-my-god, he’s-got HIV-and-now-I-have-Hodgkins-what-in-the-hell-am-I-going-to-do…” And then I take a breath, because even *I* get sick of me occasionally, and to be a good person and friend you have to shut up and listen, and I said…

“So, what’s happening with you and husband these days…”

“Well, um…I don’t know if I should tell you this…”

“Go ahead, anything has to be better than this…”

“Well, I’ve got diabetic blindness, and it just happened and I can’t see anymore…and I just found out my kidneys are failing…”

I pulled the phone away from my ear and just stared at it, as if it had become something too dangerous to keep close by…and then felt huge guilt because there I was so wrapped up in my own crap that I couldn’t take the time to intake carefully that the sky had just fallen on one of my best friends…I apologized for steamrolling the conversation and we went on from there…

“Does God just hate us or *what?* I asked…too astounded even to cry or yell.

What she and her husband dealt with in the remaining seven years of her life…it was just hell…there’s an upside to hell though, and my husband, myself and her just made black humored nasty jokes about how much time we had whenever they came by. There was an odd sort of freedom in those conversations, the three of us pushed outside the boundaries of ‘health’ and waiting to see what our answers would be…Her husband, unscathed, remarked that he felt a little left out… but there was about a year and a half reprieve for her, and for him.

That was when the miracle happened.

She was put on the list for a new kidney. And waited…and waited….for about five years I think…she’d call me up and calmly rationally tell me that she really wanted to just hang it the **** up. No emotion. No neediness or drama. She was too drained and fatigued for that. She just wanted to go.

And then she got the call in church on Sunday and the husband called me and I met him at the hospital….

And *even in that recovery room* the listless voice was replaced by something else…something better.. She was weak, but it reminded me of her old voice…before the trouble…

And then I came *back* less than a week later…man….the sound of that voice. It was exactly the voice I remembered from being fifteen and up in her attic. Listening to music and talking about boys…she was back, her positive, breezy sunny self…I was amazed.

I crutched into that hospital room in a hurry, practically laughing too hard to speak…”What year is this anyhow,” I said,” 1978???!!! She laughed, her sister’s laughed and agreed…

The good time brought about by the kidney didn’t last, but….

was it worth it? Hell yes.

Was it a miracle? I don’t have any trouble saying that it was. Was it any less a miracle because she didn’t live to see the 21rst Century?

No.

So anytime something works for awhile…that while is good time.

(and for any doubting Thomases out there: No, nothing that I’ve written of personal experience on this blog is fictionalized or false. I could *never* make this **** up.)

4 Comments

  1. bridgett said,

    You bring up something interesting in the last line. I’m beginning to think some people just aren’t paying attention — do they not know the stories of those in their private circles grappling with challenging conditions of all sorts? When abled people build walls between disabled and able communities (comprised of paper and cement and spackled together with a whole lot of denial), they are losing access to the reality of the entire human experience. Oh, I’ve got tons more to say about this but in-laws arrive in about ten minutes and I’ve got a kid to feed.

    In other “becoming visible” news: I am pleased to point out that the cover story and theme of the American Historical Association’s monthly magazine (Perspectives) is Disability in History. The president of the AHA, in her essay reflecting on the ways in which disability makes a difference in scholarly practice and in institutions committed to providing comfortable and diverse workplaces, she concludes that in her experience “Those who speak for the disabled speak for us all.” (Disclaimer: She was my graduate mentor and our program is known for its robust disability history graduate program, from which my husband got his PhD.) So the message is getting out there — they’ve got a subscriber list of several thousand and pretty much every college history prof will be receiving a copy of this.

  2. bridgett said,

    You bring up something interesting in the last line. I’m beginning to think some people just aren’t paying attention — do they not know the stories of those in their private circles grappling with challenging conditions of all sorts? When abled people build walls between disabled and able communities (comprised of paper and cement and spackled together with a whole lot of denial), they are losing access to the reality of the entire human experience. Oh, I’ve got tons more to say about this but in-laws arrive in about ten minutes and I’ve got a kid to feed.

    In other “becoming visible” news: I am pleased to point out that the cover story and theme of the American Historical Association’s monthly magazine (Perspectives) is Disability in History. The president of the AHA, in her essay reflecting on the ways in which disability makes a difference in scholarly practice and in institutions committed to providing comfortable and diverse workplaces, she concludes that in her experience “Those who speak for the disabled speak for us all.” (Disclaimer: She was my graduate mentor and our program is known for its robust disability history graduate program, from which my husband got his PhD.) So the message is getting out there — they’ve got a subscriber list of several thousand and pretty much every college history prof will be receiving a copy of this.

  3. imfunnytoo said,

    Most good…:)

  4. imfunnytoo said,

    Most good…:)

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