Them Worms, Them Worms

I was planning on writing about Maggie Full of Grace and her life after polio in this post but have been characteristically sidetracked.  (It’s not hard to do.)  You see, I can never think of Maggie without thinking about her disability, and disability as a whole has blossomed into a topic that’s curious to me.

Probably because I was so oblivious to it in my youth.  I had little exposure to the disabled kids back then because long, long ago and far, far away, “special needs” kids rode on “special” buses to “special” schools and were referred to, in the brainless vernacular widely employed in those days, as retards and cripples.

(Anyone who thinks the good old days were the Golden Age and that the world is now morally deteriorating should cast their mind back to some of the common cruelties of yesteryear.  Trust me.  We weren’t nearly as golden as we like to remember.)

I was in my forties and working with hospice before I finally had my first, up close, and sustained interaction with a person of disability.   By then I had dutifully learned a newer, kinder vernacular based on an upwardly evolving world view.  I’d cleaned up the ugly, childhood slang, learned to speak respectfully about the disabled, and sincerely believed I was now wise, open minded, and prejudice-free.

Aaaah…but those worms within.

I soon discovered that, while my surface language had improved, it was just camouflage.  The old, subconscious memes of childhood were still very much alive and skulking around in face paint, just underneath.  Has anyone else ever experienced this?  Discovered that what you want  to believe and what you were once conditioned to believe just don’t synch?  It’s kind of weird how old biases can continue to operate without our even knowing it.

I found that a lot of what came out of my mouth was condescending.  Patronizing.  Even when I tried not to I’d sometimes fall back into talking to people as if they were stupid, childish, or deaf.  It was horrifying.  At times I wanted the earth to open up and swallow me.  I wanted to clap my hands over my mouth, drag me outside, and beat me.   What was wrong with me?  Why couldn’t I stop?  Was I really, in spite of all my best efforts and a deep and genuine desire not to be one, a bigot?

It turns out, no.  (Thank god.)  I was unfamiliar, inexperienced, and badly educated, yes, but fortunately these are all things that can be rectified.  The people I worked with were surprisingly generous with me, seeing through my awkwardness to the sincerity that lay just underneath, and given enough time I finally discovered that they weren’t even disabled people at all.  They were people.  Sans label.  Go figure.

If you get a chance check these out.  This a YouTube video of Aaron Fotheringham cruising around in a skateboard park in his wheelchair.  And this one is a video of The China Disabled People’s Performing Art Troupe dancing the Thousand Hand Guanyin.  (All the dancers are deaf.)  Besides being outrageously entertaining I’ve found that both these videos are helpful for blowing the creepy, old world view about disabilities right out of the water.

I look at my kids and their friends and it’s obvious they won’t have to struggle with a lot of the stereotypes that saturated me earlier on.  I can’t begin to tell you how grateful I am for that.  I know that doesn’t mean the Great Work is finished by any means.  No sirree bob.  There’s still a lot of work to do before we’re all seeing and accepting one another for who we really are.  But still, at least some of the worms are dying and I think it’s safe to celebrate the small wins.

copyright 2010 Dia Osborn

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So What Happened to David?

When we left him last week, David was dangling from the top of a telephone pole while the wild cat that chased him there clung halfway up the side, ferociously guarding the only escape route.  I, in the meantime, was trying to drive the demon off by wildly throwing rocks into the cattails, the nearby trees, the air, and one that even went a full forty-five degrees down the road to my left.   I was considering trying to shimmy up the pole myself when, for no discernible reason, Wild Cat suddenly decided to call it quits.  It went silent for a few seconds before backing down the pole and disappearing into the surrounding brush and then poof.  It was gone.  That fast.

Initially I was relieved.  Elated.  Jubilant.  But then I looked back up at David still hanging from the crossbar and realized he probably didn’t know how to climb back down.  Of course he hadn’t really known how to climb up either but he’d had the benefit of adrenaline-fueled terror moving in that direction.  Now that it had worn off he was just uncomfortable, limp, and fat.  The thought occurred to me it might be time to see if firemen really do rescue cats from high places.

In the end that wasn’t necessary.  It took close to twenty minutes of cajoling but David finally decided to come down on his own.  He scooched back along the crossbar, transferred to the pole, and worked his way down to the ground backwards.  Once there, no amount of coaxing could lure him back up onto the exposed vulnerability of the road, but he followed me on a parallel path through the brush as I turned and beat a hasty retreat back to the apartment.  At the last he had to break from cover and make a wild dash across the road to the door where he bunched himself into a corner, casting panicked glances over his shoulder for the few seconds it took me to unlock it and let him inside.

Needless to say, David refused to ever step outside the apartment again and I no longer invited him to even accompany me to the door.  We were both pretty shaken up.  Color me superstitious but I found myself wondering if  his agoraphobia might not have been due to some kind of premonition on his part.  What if he actually knew what was waiting for him out there?  Maybe he’d had wild cat nightmares from kitten-hood, warnings sent from the future to Stay!  Stay inside for godsakes! no matter who beckons–no matter how friendly or safe the girl who eventually opens the door might seem.

The good news is that, after things settled back down, as long as he didn’t have to go outside David was the same bloated, happy, affectionate cat he’d always been.  Aside from a new tendency to give the front entryway a wide berth, he seemed basically unchanged by the whole experience.  His world  returned to the small, cramped space it had been before, the one which constricted his geographical range but in no way limited his level of contentment.  That was what particularly struck me.  In spite of his phobia David the Scaredy Cat remained one of the sunniest, most upbeat creatures I have ever, to this day, encountered.

I thought about him a lot, years later, as I spiraled down into the collapsing world of agoraphobia myself.  My first instinct was to fight against the overwhelming tendency to withdraw, to try and force myself to go out anyway and do all the things I’d always done, but it was like trying to swim out of the gravitational pull of a black hole.  I could spend hours in paralyzed terror contemplating the front door, trying to work up the nerve to grab the knob and turn it, but the harder I pushed myself the more extensive my internal collapse became.  Eventually, not only was I unable to go outside the house most of the time, I could barely function inside it either.

So finally, in desperation, I decided to try David’s trick.  I surrendered.  I shaved down my life to the bare essentials, outlining the few critical commitments I had to at least try to meet–getting out of bed in the morning, taking a shower, feeding my family–and then deliberately cut the rope that tied me to all the rest.  I redefined my basic world as the one that existed within the four walls of our home, accepted it, and–surprise, surprise–experienced an immediate rebound.

This is not to say I instantly attained David’s zen-like level of perfect bliss by any means.  Not hardly.  My agoraphobia was only a beginning symptom of something far bigger that would take me years to learn how to navigate.

But the immediate paralysis ebbed somewhat.  As soon as I stopped demanding a full return to my previous, now impossible life schedule, something frozen in me started to thaw again.  It wiggled its fingers and toes.  It drew breath.  It tentatively started to work again on the now drastically scaled down version of my life.

I discovered that–for me–in spite of the fear, in spite of the sluggishness, in spite of the overwhelming sense of heaviness that kept dragging me down towards lethargy and despair, I still somehow retained the capacity to both love and navigate.  That was my miracle during those years, the transcendent thing I could still create even in an incredibly shrinking world.   My territory got a whole lot smaller, yes, but my heart and willingness to explore it didn’t.  And that’s what David’s example taught me.

That’s also why David is, along with Cerebral Palsy Man, one of my biggest heroes.

copyright 2010 Dia Osborn

More Role Models and Superheroes

Cerebral Palsy Man was not the only role model that helped me see how happiness can prevail in spite of having every reason in the world not to.  There were two others who illustrated the mechanics of this for me–Maggie Full of Grace and David the Scaredy Cat.

Maggie, a victim of one of the final polio epidemics to sweep across the U.S., lived out the following fifty some-odd years from a wheelchair as a near quadriplegic.  Shortly before she died, she shared one of her keys to maintaining freedom in a low-functioning body with me, which I’ll cover in a following post.   But for now I’d like to talk about David.

David was a cat, literally, and an important part of the apartment package I agreed to house-sit for, one summer during college.  I’m not generally a  cat person–god help me I’ve tried but I just don’t understand a creature that blows hot and cold like that.  However, David was one of those strange cats that behave a lot like a dog and was therefore, to me, one of the more engaging members of the species.  He was both affectionate and hugely fat and loved nothing better than curling up in a nice, warm lap to sleep, thereby numbing the attached legs into a kind of appendage coma.

He was also agoraphobic.   I never heard the details of how or when it all began, but evidently once David developed a terror of leaving the apartment he never did so again except for a yearly trip to the vet during which he was heavily sedated.  Years had passed since he’d experienced the outdoors in a conscious state.

I had no problem with this.  David was content to live inside and seemed no worse the wear for his annual drug-induced stupor, so far be it from me to pressure him to change.  But as the summer progressed he and I developed a little game around his condition.  He would accompany me to the door whenever I left to go anywhere.  I would then open the door, pause for a moment and invite him to step outside with me.  He would then carefully consider the invitation, stick his nose over the threshold and take a few sniffs.  But then he’d always pull his head in, step back, and look up at me as if to say, Y’know?  Thanks awfully, but I think I’m gonna pass today.  You go ahead.  Knock your socks off.  Have a great time out there.

We did this every day, every time I left, for two months.  It became our little joke.  He never intended to go and I never expected him to, but we’d pretend like it was a possibility anyway because we both got such a kick out of it.  But then one day, out of the blue, David changed his mind and with no warning at all, stepped through the door and down onto the sidewalk.

I was floored and just stood there staring at him, slack jawed and goggling.  I had no idea what was going on and wasn’t at all sure how to proceed.  But he looked so confident there at my feet, jaunty and gazing around him, surveying his new domain,  that I quelled the scream of excitement rising inside me and tried to assume an equally casual attitude.  I walked forward slowly, testing him, and he kept pace with me step for step, calm and curious.  There wasn’t a trace of fear in him so eventually we strolled off down the street together, nonchalant, as though we did this all the time.  As though we were heading to the club for martinis, arm in arm, top hats tilted at rakish angles.

Eventually, David grew so bold that he even stepped off the street to explore some of the low brush growing alongside.  The road bordered a large pond full of cattails and nesting, red-winged blackbirds who instantly and strenuously objected to his presence.  He ignored their dive bombing (you vulgar birds…we do not notice you) and proceeded to thread his way through the vegetation like a pro.  He looked like such a cat all of a sudden.  Stealthy and smooth, feline and graceful, all signs of the fat and dumpy slug he was at home gone.  I was proud of him.  Happy for him.  Intoxicated with his success.

And then came the wild cat.

It showed up out of nowhere.  No.  Out of  nightmare.  It was tiny in size but mighty in ferocity and it hurtled straight at David, spitting and hissing like some writhing, poisonous, pit creature.  It scared the living shit out of both of us and David immediately panicked, bolting for a telephone pole sticking up out of the brush about fifteen feet away.  The other cat took off after him and  I started chasing them both, waving my arms (threateningly I thought) in the air over my head and shrieking unintelligibly.

There was a brief moment, as David scaled twenty feet of pole in an adrenaline fueled blaze of lightning speed, that the wild cat and I both paused in surprise and grudging respect.  But then he scooched over and hung himself by the armpits from a crossbar, dangling there like some weirdly displaced flour sack, and chaos erupted again.   The wild cat pursued him about halfway up the pole then stopped, clinging and spitting curses there like the demon spawn of hell it was, threatening him with god-only-knows-what kind of cat horrors while sticking all its fur straight out as if it was being electrocuted.  I, in the meantime, was on the ground spitting curses of my own and clumsily throwing rocks, broken glass, and any other debris I could pry out of the dirt at the impossibly small target hanging off the side of the pole.

And here I apologize but I’m going to have to leave you hanging for a while longer with David.  This post has totally gotten away from me and I’ll have to finish it next week.  Stay tuned.

copyright 2010 Dia Osborn

Irrationally Happy

Until I met Cerebral Palsy Man I secretly believed that my happiness was determined by circumstance.  I’d never admit that of course, because I know I’m supposed to believe that I determine my own happiness.   But I didn’t believe that.  Not really.  How could I?  I’d never seen it before.  I had no role models.

That was before I met Cerebral Palsy Man.

I discovered him while doing my clinical hours in a local nursing home which…may I be frank here?…repelled me.  It’s not that it was filthy or filled with evil staff or anything.  It wasn’t.  While there was a faint aroma of urine that pervaded the place, and the quality of work smelled of a corresponding by-the-hour ethic, no one I met there seemed to harbor any ill intent towards the residents.  The place itself just seemed to drain them.  Physically, emotionally, and spiritually.  It was like a black hole for positive energy–no matter how much you started out with when you first arrived, by the end of the day the run down furnishings and endless, linoleum hallways littered with sagging people in wheelchairs sucked it right out of you.

I’m not alone in thinking that institutionalizing illness and aging isn’t working.  Pretty much everyone dreads these places.  I’ve never met a single human being that’s told me Boy howdy! I just can’t wait to get old so I can go live in a nursing home. While there’s an excellent movement afoot to try and change this sorry state of affairs, to date (as we all know but still deny whenever we have to we drop off one of our own elders) nursing homes are by and large depressing places.

Yet strangely enough it was here, in this horrible environment, that I discovered the surprising existence of Cerebral Palsy Man.  He was a gentleman in his seventies who’d been living with the disease all his life–had in fact resided in a string of nursing home-type environments since he’d first been institutionalized in his twenties.  To my mind, after what must have been a long and miserable existence (right?) he should have been reduced to little more than a lump–a morose, dejected huddle of a human being just waiting and wishing to die.

But au contraire!

How wrong and riddled with stereotypical thinking I was.  Instead of some sad and depressing lump of a man I found a total radical.  In spite of the fact that he couldn’t bathe, dress, toilet, shave, transfer, turn, or feed himself, he was outrageously happy.  Contagiously so.  Everyone loved him.  The only time I didn’t see him smiling was when he had to stop and open his mouth for a spoonful of the pureed, mystery meat they served for lunch that day.  Otherwise, he sailed up and down the hallways in his electric wheelchair, singing out a warm and (to my inexperienced ear) totally unintelligible greeting to everyone he passed including his new roommate and blushing bride–a plump and cheerful, equally helpless woman who shared his name, bathroom, and cerebral palsy diagnosis.

So what was wrong with this man you ask?  Why didn’t he just knuckle under and curl up in defeat as required?  Everyone else living in that awful place seemed to get it.  The majority of them were actually far more independent than he was but still obediently complaining and morose.  Why didn’t he conform?  What made him think he could be different?

Aha!  But our Cerebral Palsy Man was no novice.  He had a gift that few of the others there shared–an entire lifetime of dependency and debilitation.  He’d had over seventy years to adjust and adapt to not only the strict boundaries his body dictated, but the grim institutional settings they’d landed him in.  And–here’s the real kicker–he’d used that time to nose around and discover a secret that most of us never do:

Limits don’t in any way restrict our ability to make miracles. Because they can’t.  How could they?  Limits and miracles don’t even exist in the same dimension.

It’s like the difference between the world of time and space that exists within the speed of light and then the mystery that exists out beyond it.  His body (and the dreary hallways and overworked staff and pee odor and bad food) all belonged to the slower, visible, measurable world.  But Cerebral Palsy Man had managed to launch out somewhere beyond into a radiant realm brimming with unreasonable joy and enthusiasm.  Trapped for life in a nursing home for godsakes, and this man (my role model, my idol, my superhero) was totally and irrationally happy anyway.  That was his miracle.

Well, let me tell you it didn’t take much time spent in his company for the sleeping radical in me to sit up and take note, too.  She studied him for a little while, then looked back at the gray people, then looked back at him again, and finally whistled low and long.  Whewee, she said.  Fuck following the herd then.  I want whatever he’s having.

And really I ask you–if he can do it, then why can’t I?  So what if I’m a depressive?  So what if I’m a multi-phobic person with a dissociative disorder?  So what if I spend more time curled up in the fetal position than your average Joe?  Evidently, if I want to go ahead and be irrationally happy anyway, I can.  All I need is a cape, a grin, and somebody to show me the way.

Bingo!  And now I want to be just like Cerebral Palsy Man.

copyright 2010 Dia Osborn