Friday, December 11, 2009


We are about to digress into a section of blatant moaning, whining, complaining, and self-pity that no self-respecting quadriplegic would ever put into print. Be forewarned. Those who think we should just take our medicine like adults and get on with it (which certainly has its merit) perhaps should just move ahead. Just don't quit yet; it picks up again later, I think.

Now that we're at it, let's consider some other nightmares to which quadriplegic flesh id heir. There is, or course, the dreaded diarrhea. If one thinks about what that means to the walking public, with its frantic runs to the bathroom, occasional accidents, and accompanying embarrassment and humiliation, imagine how that is multiplied exponentially for wheelchair folks. Messy and miserable.

In a just universe, what diabolical mind would visit these conditions on the permanently seated? Who could deserve such a thing? OK, I'll give you the chronic 'I'll-go-later alcoholics with delirium tremens, the chocolate dependent, and the laxative junkies. Oh, and the fecal fetishers.

How about Red and yours truly, who has more bowel and bladder related episodes to impart hereinafter. For instance, I once met a very conscientious, model-citizen paraplegic in his mid-fifties in San Antonio who did all the right things and who had diarrhea six straight months, two to three times a day, everyday. And he worked! Over the years, I too have been a very self-responsible guy. I eat right; raw green veggies, whole grains, fresh fruit, eschew the junk, don't drink, don't smoke, exercise, and do what my doctors tell me.

All that notwithstanding. I have sat in poop in Maine, Massachusetts, New York, Texas, Ohio and California, in cars, buses, and planes, in courts federal, state, and county, at fact-finding conferences, depositions, settlement meetings, law school, and farm worker marches. Well, you get the idea.

I have done the Red thing being lifted off planes by security people, assorted helpers, and onlookers, including pilots, flight attendants, and at least twenty unknown passengers. We all gawked in embarrassment for each other. This has happened in Austin, Texas. It occurred once in first class between Houston and Harlingen. You try explaining that to a flight attendant who had treated you like Christopher Reeve, Steven Hawking, and Helen Keller. Piss? There are urine episodes to come, so I'll not steal my own thunder. Suffice it to say I couldn't count them all with an advanced algorithmic abacus.

I am laboring here to impart a sense of the enraging injustice for me and for those who know the profound humiliation, the complete loss of dignity, and the frustrations that go with this territory. What do you think and how would you feel if you, a full-fledged adult of either gender in full mental health had just publicly shit his/her drawers right in front of a room full of strangers?

You probably couldn't disappear fast enough. What could anyone possibly say? There are no words in English or any other language to explain that. Simply put, you take your medicine like than man said, move on, and hope never to have to see any of those people again. Ever.

Now, if you recall, I told you there would be a dark side to this business. There is always fear of a menace named autonomic dysreflexia ("AD"). This can result from several things: bowels a bit jammed up? Bladder not letting go? Shoelaces too tight? Body too hot? And on and on. Results: Blinding headaches, sweats, spiking blood pressure through the roof, steel trap-tight muscle spasms, eventual stroke, heart attack or seizure. I've had AD several times; the most recent put me right at Death's Door.

Pneumonia, bed sores, broken bones, phantom pain, and swollen limbs, the list is very long indeed. To be clear, my intention is not to whine about how hard it all is, beg for help or sympathy, or repulse or disgust anyone.

The dark side is pretty dark. As the Introduction said, there is a light side and lots of laughs with friends and family over many of the stories that follow. After all, I made it through, and (in hindsight) sitting in poop arguing before a federal court judge does have a humorous ring. Habitually worrying about me as my Mom did, I could only reassure her in the words the poet sang, 'It's alright Ma, I can make it'. To my reader: relax. I am OK.

Read the stories that follow with this in mind: the dark and the light side are, at heart, mostly a matter of time and geometry. What seemed so horrible at the time appeared laughable later. What from one angle seemed so serious, from another seemed hilarious. As my Dad said, 'It's all in you head anyway'.

1978 + Pittsfield, ME

It was a party of old friends in a small, rustic cabin in rural Maine not long after my return to Wellington. By this time I felt comfortable with the injury when around old friends, who treated me just as in days gone by. We didn't stand on ceremony or feel awkward about the chair. It was as if it never happened or didn't matter. On an evening awhile before this particular party, I was headed out with some of these folks for a night of marry-making. I said, "If this injury thing and hauling me around gets to be too much, let me know." My friend Michael responded, "We're friends going out together, only one of us needs a little more help than the rest of us, that's all." It was no big deal to these guys and gals. I knew I was home.

Back to the get-together. It was early evening; kerosene lamps were just being lit. Light and shadow vied for predominance, like lights turning on then off in a removed room. Sixties music played, muted in the background:
"When men on a chess board,
get up and tell you where to go,
and you just had some kind of mushroom..."

The atmosphere was a twenty year throwback to a time when we were younger and less careworn. The children were in their delight; no time had intervened between their then and their now. They were living testaments to the joy and wonder being alive offers.

There was this group of about six or seven of these rambunctious children, ages four to ten or so, who kept running by me from outside to inside and place to place. They giggled and chuckled as they ran. One little girl of about five with long, straight brown hair and an ankle length calicoesque dress, like a Little House on the Prairie child, stopped in front of me every time the other kids ran by.

One time she simply looked at me and my wheelchair, gazing from my feet to my hair, studying my chair as an object of intense interest and mystery. Another time she looked intently into my eyes, as if trying to read some message hidden there or gauge my state of being. Another time she took my hand in hers, turning it from front to back, unfolding my fingers, like a palm reader intent on deciphering something unknown there. Each time this interesting little thinker gazed curiously at me, obviously taken with me, injury, chair and all.

Yet she said nothing at all, not even "hmm", question or remark to another child as they raced by. Each time she would stay with me a minute or so, then run off to join the other children, laughing as she went as if nothing had happened. I was captivated by this inquisitive child, who looked at me and encountered me so unabashedly. I felt special, picked out, like the first kid chosen for the baseball team.

The children ran by me once again. She stopped, stood close to me, fronting me like an unassailable little force not to be denied. She stared penetratingly into my eyes. I knew something portentous was coming. Apropos of nothing that had gone before, she asked, "How do you poop?"

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