Uncomfortable People

December 8, 2006 at 11:54 AM (family) ()

There are the ones we *really don’t like* most of the time.

But sometimes, they help:

In the eighties, one winter, I was being driven back to college by my father. Uncharacteristically, he was sober.

I forget what we were chatting about, but like me, he was a talker.

Then we ran out of gas. This was in the days before blackberry’s, cellphones or Gps. The only way to summon help was to find a person or a land phone quickly. The nearest of course, were up above us, at the school, out of reach.

My liberal arts college didn’t need to wax poetic about being a “city on a hill.” It was a tiny place no more than a few blocks in size situated on the highest spot in it’s county. We were almost into town when the car died… but not quite there. We were still down at the base of the hill. I remember I had the BigUgly Hiking Boots, that were my favorite ‘snow tires’ and appropriate winter clothing. The wind was blowing. It was nearly dark, and snowing.

What followed was a long, painful blur of climbing in the cold, his constant shout of encouragement the only sound, until somehow, we reached the “top” and found ourselves on black ice in the post office parking lot. He called my mother, and we walked from the post office to the dorm in the cold, it seemed a much colder, longer walk than usual. I don’t think I even had my crutches…I don’t remember why.

Of course, when she arrived and after, she was angry (as was I) about the gas thing, and why hadn’t he watched it, etc etc.

And she was right, paying attention to small simple things and being responsible were not his strong suits.

But, had she had car trouble and left us at the base of that hill, I would have been unable to conceive that I could climb that hill, as rock walls are climbed today.

He helped haul me up that hill, and forced me to my limits when he could not haul me himself.

He had a profoundly negative effect on most of my life, but every once in a while, he was what was needed.

It’s not pleasant or easy to admit that the ones who did you emotional harm, were also able to kick your *** when necessary.

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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?


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.)

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November 3, 2006 at 5:47 PM (Uncategorized) ()

No, this isn’t about a certain well known Ohio Quarterback, or anything else of the present. Since I can’t find anything to write about decently in the present, I will head back for another reminiscence.

It is late summer 1985. My paternal uncle timeshared a cabin large enough to be called a bunkhouse, and he and his fiance hosted my father, myself, his girlfriend, my aunt, and all their families and children…

The van drove from Ohio for what seemed like forever, into a far more remote part of Canada than I was used to seeing. It drove until the road actually stopped, and a friend of my uncle’s advised he would look after the van…we unhitched the boat and motored across part of a huge lake for about an hour and a half. Everything that I knew was “good” about being away from civilization seemed to improve with every mile of distance…bright sun, deep water, green grass, the chance of seeing a bear(!) under carefully choreographed conditions meant to keep us safe, and our “garbage dump” not a temptation for repeat visits. I did see one. From a distance.

We brought partial provisions, but the tiny island the bunkhouse was on provided an abundance of blueberries for pancakes and cobbler, and just-by-themselves, and the waters were full of either pike, walleye or both…after a particularly successful bout of fishing we had a table full of fresh lightly breaded fish and plenty of blueberry derived baking etc.

My uncle, quite pleased with himself (a state he was often in), said, without apology, seeing a family together that wasn’t brought together often, enjoying platefuls of what had been part of nature less than a day before, said, and I quote:

“I can do anything. I must be God!”

“What does that make me?” queried the elder brother, my father, from downtable, rather wryly, “God’s brother?”

“Not!” I howled, laughing…even though it was refreshing to see my father clean and sober, at his best…He was never happier than when telling a bogus “scary camping story” to his nephew and watching the boy shriek with that odd combination of glee and terror that those stories invoke.

I fished that week, and I’ve blogged previously about being dragged out to stargaze late one night. But one coolness seemed out of reach, so I decided not to want it.

There was a fire-circle, up a steep, steep hill, a long walk as well as a sharp grade…and the master of ceremonies insisted by later in the week that we would all be up there for dusk and marshmallows and singing.

I was in the middle of earnestly insisting that this was quite impossible when my uncle grabbed my shoulders and my father my feet, and they slung me between them like some oversized sack of grain and hauled ass up that hill…My uncle was a triathlete, and my father exceedingly motivated to do as good a job as his brother.

They succeeded, and so there was a late afternoon/early evening air of triumph around the circle. I was displeased with the loss of my dignity, and let that be known, but I did enjoy myself, and they showed more careful attention and less sheer athleticism on the way back down.

My uncle and my father: making sure that life was either an insurmountable obstacle or a constant triumph over adversity, and neither had any middle ground in their experience or personality…

My uncle’s family has gone through some real heartache recently…We are in touch, but not often…I wish the overachiever with the knockout smile well, and hope that he’s been able to adapt to pain or adversity, rather than simply dismiss it. Another type of triumph than he’s used to, but a triumph nonetheless.

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What they believed

November 2, 2006 at 2:13 PM (Uncategorized) (, )

and what they didn’t

The able around me.

The Parents well, they were at first overly dramatic about What I Wasn’t going to Be what *they* were going to be denied or lose because of my impairments. One of my father’s most infamous drunken rages, listed in my mother’s journal berated my mother for not only producing a girl instead of a boy, but that she couldn’t even do *that* right, because I was impaired. Limiting or dismissing the child as is in some ways. Then they breathed a sigh of relief when I turned out intelligent…and then a shift to What I Had to Become to meet what I call now, the tyranny of expectation, and to avoid them being sentenced to a lifetime of being a physical caregiver for me. “I want you out of the house when you’re eighteen, and I admit that my reasons are selfish.” They remained adamant against Driving or Procreation (also, as with any teenage daughter, against both in the same vehicle, [snort]) but were pleased with having me grow up nearly “normal.”

It’s just that we, the three of us, didn’t think to prepare for What If Additional Impairments Come Along? I didn’t, they didn’t my husband didn’t….no one did.

Before anyone yells alot, I absolutely know that the expectation of family and friends made a large amount of good, positive, occasionally even great things happen in my life. I view mainstreaming as a good, in my case because it got me education, made me (temporarily) unafraid of people and let me meet people who are great friends.

Most of them are still able to live in the moment with me. They’ll get tough with me if they feel it’s necessary, and ease up when hard truths can wait a bit..That is why I cherish my friends…most of them see value in the fact that I’m on the other end of the phone or the email regardless of impairment, weight, etc etc, blah blah blah.

The ones who permanently dissappeared, dropped off, or just lobbed too much disrespect my way…I believe it’s more their stuff than mine, and in two cases, I worry about them and wish they’d come back After The Husband Drama They Couldn’t Handle was over.

But, I gotta admit…The ones who accepted the quickest, were…nearly all of them fellow gimps or impaired folk.

I have no doubt that the positive parts of my marriage were made more so by the fact that we both understood about hospitals, impairment, limitations….and he was one of two people on the planet to which I had to “explain” nothing about my cerebral palsy and how it worked. It made it simpler, in the beginning…

But, of course, the Universe likes to smash easy assumptions so the next guy with impairments was…well…I’ll be nice today and say…The Worst Fit Humanly Possible….

But my female friends with impairments…they are my most recent, and while we were in touch, extremely easy to be with…

If you’re an able person:

I think if you have friends with impairments

1. Live in the moment.

2. If necessary, be-ing is more important than do-ing.

If it’s important to them, and you, encourage as much “do” as they’re comfortable with…and maybe a bit more, some of the time.(If they’re crip jocks, *you’ll* have trouble keeping up with them! ) We all have comfort zones to be pushed out of…but if the “do-ing” is really more for you than them (I can’t stress this enough) consider, and for the love of your belief system, back off.

3. And, be adaptable and flexible yourself, should additional impairment show up.

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Gimp Camp

September 27, 2006 at 8:10 PM (vacation) ()

There are so many good things to say about it for me…

Our local “gimp camp” was not disability specific…

So it wasn’t as easy to snipe at the Special Ed kid, if you helped them with their bedmaking.

Excluding the quadriplegic from games wasn’t quite so simple if you fed them their Froot Loops.

Lots of bonding, camaraderie….And the same batch of people went when you were eight, and many still attended up to the last year, their 21’rst birthday.

The most amazing morning was the time, just after sunrise that a boy with cognitive impairments thought nothing of going to breakfast without his clothing…and ran around the whole place smiling with his hands outstretched…the male counselors trying to snag him with a robe were the ones we laughed at….The naked guy was just happy, and in his element and having a good time…The harried counselors were terrified that if they didn’t get some coverage on the guy it would mean their jobs…

The counselors were trained to guard against the slightest sign of not doing absolutely every task that the child should be capable of…For my friend Becky who had not been able to achieve a single roll over in her 17 years, the day she managed that roll, to assist those who dressed her was as big a celebration as any Special Olympics medal.

I had not yet learned to tie my shoes by the age of eight, and the counselors had been told that this was of some concern…so one morning I was forbidden morning activity…no restraint or cruelty, no punishment, physical or emotional…they just let me simmer there until I figured it out. Took me about three hours.

Romance, I found, was difficult…since the counselors followed and physically stood between myself, and the awkward boy that would become my husband, many years later…

The good I took away from that place was this: For one week, I did not have to explain myself. I was not dismissed, disrespected, laughed at. No one pointed. No one stared. (At least not in that “look at the poor impaired kid” way).

One summer as the busses pulled up, everyone else was sad or weeping because they would miss a friend or a counselor they had become close with. My favorite counselor came to my place in line and asked me why I was crying.

“Because I have to go back…this is the only place I’m not different…and it’s not *fair!* To have to go back to fifty more weeks of living with *them!* “

Somehow, I always had a serious hate on for the able when I had to go back and live among them again, that took about two weeks to wear off. They had privilege. They had respect. It was all so *easy* for them, I thought, just to be themselves. And here, I found this place where I could be *myself* that was not less….and I was only allowed to stay a week…

Others will differ, saying a ‘segregated’ camp experience for only impaired children didn’t do enough to prepare us for life and hardship and independence. Maybe so. But I *needed* a break from being the local ‘freak,’ and that’s what I got.

Or, maybe I just liked the fountain.

It was July 1976….I was fourteen…and was beginning to connect with my boyfriend…

I had made the mistake, early in the session, of beating him and his cronies at poker….I didn’t know it, but that really stuck in his craw some…

We were told we were going on a five mile hike…He and I resolved to take the trip together, but neither of us felt we could walk the entire five miles unaided, so we appropriated an E+J camp wheelchair…He would push me for the first two and one half miles, and I would push him on the return leg.

So he did very well and we had quite the chat until we stopped near the fountain that would be our spot for lunch…I was thinking of a drink and a sandwich and got taken by suprise when the chair tilted forward and I did an unplanned bellyflop…right into that fountain.

“Payback for the poker game, sweetheart,” the insufferable culprit said.

Hampered by the slick surface and the water I shrieked, sloshed and dripped, and slid and yelled and fussed and only succeeded in getting myself more soaked…I got some help, and got out…

And I *still* had to push the brat 2.5 miles back home, because my crutches were back at our basecamp, and the chair he occupied like some snotty conquering king was the only thing I could hold onto while walking…

So I sloshed, and dripped and cussed all over his head, for the entire afternoon and sometime in that trip back, he said, was the moment he decided he was in love with me.


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