Thursday, December 17, 2009


I was among seventy five or so bright youngsters, many of the silver spoon, and a few older guys who seemed to be there to ogle the young and/or stay in school (which phrase has become quite fashionable). I felt a bit out of place, as if that drunken seventeen year old Cortland State adolescent had been awoken by a bad hangover to find himself at Harvard and still without a clue.

I immediately made acquaintance with Bob, an ogler who shamelessly played on the fact that I couldn't be too choosy about my friends. This was he of the, "He may be cripples, but he ain't dead" slogan. He was central to my three-year law school career and deserves more careful attention.

Bob was of medium height, about five foot eight, and of medium build, neither over nor under weight. He wore his rather thin, dark brown hair well above his shoulders. A close look at Bob's hair told a tale: he would be bald before his time.

He carried himself with an understated confidence, like an athlete sure of his talent. With good reason, he was the star of our class. His booming, deep voice and impeccable diction bespoke an orator of the highest order. His writing rendered the coveted Law Review available to him with little effort. His mind was sharp and very quick. He was the class wit. His observations and opinions were delivered in that endearing self depreciating style. His every word seemed to come forth of its own momentum, as if it were waiting to be spoken. Our sallies of wit were invariably punctuated with great good humor. I loved Bob and miss him still, twenty four years later.

His, "He may be crippled..." remark is typical of his brand of humor and our friendship. Bob would have given me a kidney while cracking wise about my inability to open a door in a snow storm. The VA hospital taught me to be serious about this injury; Bob helped show me how not to take myself, especially the wheelchair part, too seriously. Life's lightness is where you find it.

He sat near me in the auditorium-like first year classroom that had cream colored deep pile carpets, of course. Pushing my way over this was like a day at the beach, wet sand and all. The room was well-lit, harshly so, it seemed some days.

A raised, semi-circular area in front centered at the obligatory podium, behind which some professors hid and some simply taught. Most of these professors used the hated Socratic Method. One student at a time was mercilessly subjected to a series of rapid-fire questions, many of which had ambiguous answers, at best. The queries proved to be traps for the unwary, which was the point, after all. Many of these would-be Socrates', I eventually figured out, were little more than over-educated territorial egoists protecting their law school fiefdoms.

Most of these young students were bright, it is true, but not necessarily that bright. At first, I was worried that my years of ingesting STP, LSD, and mescaline and smoking plenty of pot and hash had left my brain too addled to keep up. I had, however spent years discussing and arguing over international politics, world history, and quantum mechanics with very smart and quick hippies, neurotic professors, and downright psychotic misfits to quail now.

Sill, I felt nervous, as if I were in the well known dream in which I was the only one naked in a room of fully dressed people I hardly knew. I tried to melt into the background, but Bob always had another crippled joke or observation meant to shine the spotlight on me. Every day, I feared a piss scene, tipping over, getting stuck, or spilling food on myself. If so, Bob would be in his glory, declaring so all could hear, "You know, watching you eat is excruciating, like watching the loser of a food fight he can never hope to win."

One one particular day, I was almost late for class, which was a venial sin that brought hard looks down on the malfeasant from the podium. I had barely enough time to get to the Men's Room, empty my urinary leg bag, which was full almost to overflowing, and hustle to class on time. If all went well, that is. I was wearing my beloved light blue, thin-soled cloth tennis sneakers and khaki pants.

In the men's Room, I got my chair into position sidesaddle to the commode and locked my brakes. I put the toilet seat up, lifted my right leg onto the toilet bowl, set my foot down on the rim, leaned forward and to my right, and unlocked the clamp that held the urine in the bag. That then let the quart of steamy piss pass without comment into its new environment in the plumbing system and eventually out to begin a new life somewhere else, far from me.


By what must have been an irrevocable order from Zeus himself, ordained to punish and humble me yet again, my foot slid ever so slowly along the rim and inevitably into the bowl.

[Digression: One day, I was driving to work on a cloudless and pristine early morning. The freeway was icy and trecherous in places. I was driving very slowly. In front of me at a distance of a few hundred yards, a pick-up truck skidded out of control. This truck was soon sliding across the roadway at a right angle to oncoming traffic. I watched spellbound as the car in front of me slid toward the truck in what appeared to be super slow motion. The accident occurred as expected.]

This law school piss situation was exactly like that. I watched my foot slide forward and to the right, also in slow motion. The entire event happened as if it were fated, as I say, to do just that on that day at that place at that time.

There was nothing I could do. I was alone. If I lunged or simply reached toward my foot that would only have served to hasten what could not be prevented. PLOP, SPLASH, into the bowl went my right foot, tennies, socks, khaki pants, ankle, and all.

Now what? Nothing for it but to pull my nasty, soaking wet, and formerly light blue sneaker out of the mess. I would have to go drip, drip, dripping onto that carpet and into that classroom right past Bob. 'Maybe I'll make it to my desk without being noticed', I thought. I might as well have been trying to sneak past security guarding the Mona Lisa. Sue enough, Bob sized up the situation in one quick look and announced to my seventy-some classmates what had happened and to have a look at me. Of course, every eye was on my foot instantly. Most of the males laughed unabashedly, some self consciously, some sympathetically. The majority of the women were kinder, yet definitely amused.

At that moment, I would have been fully justified under every law written, including but not limited to The Law of Hummurabi, Magna Carta, and the Geneva Accords if I had (1) killed Bob, (2) died right there and then, or (3) run away, never to be seen again.

But no. Bob's existence continues, such as it is, as does that of yours truly, and there was no place to go.

My position in the school as Bob's at-hand foil was cemented that day. If I had been wheeled into the classroom in an iron lung at Death's Door, Bob would have come up with a way to wring laughter out of the situation. He was a walking amusement park.

We had three great years together. Paraphrasing the Poet, "We longed for nothin', we were satisfied, laughin' and a-jokin'..."

Bob, old pal, this is for you:

"Law school was a very long shot,
Yet I made it there, no matter what,
With Bob as a friend,
I was mocked to the end,
whether sitting in urine or not."

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?"

Monday, December 7, 2009


June, 1978 + West Roxbury, MA

Case #5; The story of Big Red is not ours, directly. It does, however, show how bad things can get.

Red was big, as you'd expect, probably 6'2", 275 lbs. Red was a biker. He was the real thing. He had a big, chopped, totally turned out Harley, lots of big, bad biker pals and biker chicks with leathers. 'Born to Lose' tattoos, patches, and long, unkempt hair. They were angels, after a fashion. He also had a diminutive lady love, Irene, who couldn't have weighed 100 lbs, decked out. Red loved her desperately, like Raskalnikov loved Sonia; she was his salvation and his sanity. They had been inseparable partners for years, mates without marriage.

As she goes, he goes. She was going. We all knew it. Their love just couldn't hold up under the crushing weight of his spinal cord injury, from which there was no reprieve or pardon. His injury was more severe than mine. I was hurt at vertebrae level C-6, Red at C-5. (The lower the number the worse the injury). He would never ride a bike again and most likely, never drive a car again. Or live alone, never dress or undress himself, never bathe alone, never write or brush his teeth by himself.

At the best of times, Red had almost no interest in dealing with his injury or doing simple exercises or learning what he could to reclaim what little independence was left him. Red could barely feed himself, and then it was usually a disaster, like a food fight in the school cafeteria. He was completely incontinent on all fronts. He was a poster boy for "Leave me the fuck alone'. Red was depressed a lot, which took its toll on Irene. All this was before his heart broke.

They had simply lost too much. Some of us tried talking to Red. You know, empty emotional platitudes such as 'Don't give up', 'Be positive', 'Keep trying'. Words don't mean much when you can't feed yourself or shit by yourself and the love of your life is walking out the door for the last time.

It would soon be over; Red was dying on the inside and out. He gave up completely on anything and everything that had any chance of improving his lot in life. He let go of what little hope he had. he talked about Irene incessantly. All that any of us could do was listen. He barely ate, hardly ever got out of bed, was surly when anyone suggested he come back to life. He was driving everyone away.

He was yet another lamp barely flickering in another quadriplegic life, soon to die out for want of fuel. This would leave darkness and unspeakable sorrow in its wake. Unprepared and emotionally unequipped loved ones bailed out time after time under the crushing weight of piss and shit scenes, irreplaceable loss, and relentless need. This left me weary and sad and sorry for all of us. Empty.

Red gathered all his interior resources for one huge final roll of the dice. He convinced Irene to to try one more time: a dressed-up, all-out date and night on the town, complete with an expensive, never-before gourmet restaurant, roses, even dancing. Red arranged everything; reservations, champagne, rented vehicle, and attendants. He was like a frisky, new-born Clydesdale, high-spirited, eager, happy. I felt all mixed up: how sweet to watch the enthusiasm and see Red feeling young and excited. How bitter, dreading that Red was headed over a cliff, for what, if I may mix metaphors, Dylan called the 'timeless explosion of fantasy's dream'. When it goes bad in the quad ward, a night out is hardly going to fix things. It's not as if it were something he said.

The night came. Red looked handsome, all scrubbed and decked out, every hair in place, dark suit, tie, and all. He even wore a white carnation. If this didn't work, it wouldn't be for want of effort.

Irene pulled up to the curb outside the hospital in a rented black Lincoln, very classy. She wore a stunningly sexy, decolletage cherry red translucent spaghetti strap dress. She looked like a teenage prom date and a sensuous water nymph, ephemeral. Irene was beaming, as if she knew full well how great she looked. Red was transfixed with joy, pride, anticipation, hope, anxiety, and fear. We all knew what was in the balance.

Red aligned his big, black, electric wheelchair for the transfer into the shotgun seat. He positioned attendants for the lift and slide onto the transfer board, across the space between chair and vehicle, and into the car's seat. They grunted, lifted, and swept Red onto and across the board. As he was finally taking his seat, his bowels completely let go. Right there, in that beautiful black Lincoln, next to that gorgeous nymph, on that night of nights, rampant diarrhea.

Red tried to hang himself that night. Even that failed, but not for want of effort.

Friday, December 4, 2009

well, that couldn't have been much harder to transcribe--and I haven't much to say, reading the whole thing and aspecially the 'Kate' part make me want to vomit, literally nauseated--just a 'what the fuck were you thinking you selfish...' kind of reaction, not that this type of thing isn't repulsively common, happenning all over the place, all the time--
-bitter, bitter, seeds planted there, closest thing I've felt to hate, still have the bile in the mouth reaction, sour vile, makes me want to spit!


Circa November, 1978 + Wellington, Maine

Case #1: After coming home from a romantic evening, which was a much needed night out for two that included dinner and a good movie, Linda and I both anticipated snuggling, and more. We were feeling close and intimate, like we felt before the fall. Our warm and cozy log home welcomed us on our return, like an old and loving friend. Linda lit a few kerosene lamps that flickered silently, throwing dancing light about our nest. All was quiet, except for natural sounds outside such as coyotes howling in the distance, a gentle wind in the trees, and dried and leathery leaves swirling about. This seclusion was one reason we had come to Maine. We were in our chosen element, except for the chair, of course.

We had our routine down by now. Linda took off my coat, stripped me to the waist, and removed my shoes. I then positioned myself alongside our double bed. Linda grabbed my pants on two sides while I prepared, with her help, to slide directly into my place place on the marital couch, as the saying goes. Nothing out of the ordinary had happened so far. Linda lifted and I heaved; the two of us strained to do what is so easy and natural to so many. I finally transferred into bed, only to discover, in dismay and disgust that I was sitting in a small boatload of poop. That's no metaphor. We knew immediately, without doubt and without a word that the romance had been killed for us, at least for that night.

Linda and I were well aware after almost a year of this misery that we were losing the romance in our marriage. Neither of us knew how to get it back. I felt small and humiliated, like I was half a man at best. I wanted to scream in frustration and anger, to vanish as if I never was, to make excuses, and to apologize, all at once. I was at a loss as to what to do, so I said and did nothing. What could I say, anyway? "The reason these things happen is because I'm crippled, it's not my fault."" I didn't want our romantic life together to end like this. We wanted a lot of things we never got.

That's my story. With my feelings came disturbing and distressing thoughts and questions about Linda. How must she have felt? What were her thoughts? How did she see our future playing out? She was most often the vocal one, more open emotionally than I was. It was no surprise Linda vented her disappointment and anger right out front: "I'm sick of this. I can't take much more. Can't anybody do anything about this? Why does this have to happen so often?" It didn't seem that often to me, but it shows our diverging perceptions of the same events.


May, 1978 + West Roxbury, MA

Case #2: It was one of the great West Roxbury hospital Sundays in early spring, sunny and warm, breezy and inviting. The entire troop of the under-forty spinal cord guys and wives, and girlfriends, and assorted others were all outside in a hideaway in VA grounds, left alone by security guards, doctors, nurses, and other authority figures. There were few questions asked about what we were doing. We were out of sight and out of mind.

Nobody really wanted to know what we were up to, which was drinking beer, smoking reefer, and swaying to rock and roll at maximum volume. We were dancing, laughing, and swapping Before-the-Fall stories. We all wildly exaggerated everything, as if we were once Nobel Sex Laureates, Lance Armstrong, and Michael Jordan, all in one. We felt loose and easy and free.

Linda and I were reliving our pre-injury hippie days. We were high, happy, together, and loving life. We loved each other in what seemed at the time to be a world without limits that had no fences facing, as the song goes. Thoughts of the ladder and its aftermath were forgotten for the time being. Linda hopped onto my lap for a spontaneous, wild chair dance. We were spinning and cavorting to the beat, one hand waving free. Not for long.

"Oh, no," she cried, knowing she was sitting on piss. It was like the Riot Squad needing somewhere to go, busting a harmless party just because they wanted to and could. It was as if my urine had a dynamic of its own, to flow freely all over me at the worst of times and places. Our fun was done. Yet again, frustration, disappointment, and anger quickly replaced our so-sweet feelings of by-gone days.

There was nothing to say that would do any good. When you're sitting in piss, words lose their value. We knew this was but one more episode in a play we hated from the first. Torn between what was necessary and what we wanted, Linda and I headed back to the ward. She and whatever nurses or aides were around rushed me into bed, got my clothes off, did a hurry-up bed bath, put on a new condom, re-dressed me, and hoisted me back up out of bed into my chair.

All was performed in super-quick time. Try as we did to resume our fun, the feeling was gone, the buzz was dead, and our party was over.


October, 1978 + Wellington, ME

Case #3: During my ten months in rehab at the VA, I would mood swing between counting my blessings and thinking I had lost everything. When I got back home, I learned a terrible lesson: you can always lose a little more.

Autumn was setting in at the Gill family homestead; we needed cords and cords of winter firewood. Friends stopped by with chainsaws to help and render what support they could. Just as no one finds their way home alone, so no one makes peace with quadriplegia without friends.

One of these friends was Kate, a woman we had known for several years. Kate was beautiful and radiant: with long, luminous hair as black as a grackle's back. She had all the qualities that seduce and subdue. She also had those two most deadly elements: ready availability and total Independence. She would work by herself cutting firewood outside and come in to talk whenever Linda was not around. This was common: my women friends dropped by a lot and responded very feelingly. When I asked why this was so, one said they were "cooing over a wounded bird."

I was about to plunge Linda, Sarah, and myself into a maelstrom and let slip the dogs of war: October 28th was my birthday; I was 34 years old. Linda and my friends threw a great party at our house, the same warm and cozy friends that had welcomed us in days gone by. I drank way too much wine and smoked way too much dope. My heart was open wide, like a beaming, delighted child of six surrounded by his closest buddies, gifts, and glorious cake topped with brilliant candles. I was a sitting duck. I was primed to seduce and be seduced, to subdue and be subdued. I should have seen it coming.

Suddenly, Kate was kneeling at my side, her brown penetrating and watery eyes looking deeply into mine. She was saying she had a terrible crush on me. "Kate'" I said "you're exquisite." The floodgates opened. It was as if Hoover Dam let go in an instant, drowning all in its destructive, unstoppable fury. Love, passion, forbidden, all-consuming, crazy, flaming, infatuation shook me to the depths of my being. I was gone, washed away, and born again. 'Out the window' says the song.

Convinced she would understand and not interfere (I was crippled, after all), I told Linda immediately. This was an obvious testament to my unperceptive self-absorption.

So began my betrayal of a sacred trust and months of pain without relief for Sarah, Linda, and me. I cast our family directly into a whirlwind, like sailors in an unsuspecting hurricane.

What rendered this defenseless betray unforgivable was this:

There did not exist a more supportive, caring, and loving wife/partner during my time in the VA hospital than Linda. She took charge, moved with Sarah to Massachusetts so they could be near me. She came to see and cheer me on a daily basis. She brought me health food; wheat meat sandwiches and soyasausage. Linda was intimately involved in my care, helped me make medical decisions, and persisted in working with me to solve out sexual and other difficulties. We were a team, inseparable and committed to each other, Sarah, and our family.

Back in Wellington, Linda, Sarah, and I found ourselves in a vortex of accusations and counter accusations, tearful, angry confusion, alienation, and increasing emotional inaccessibility. The three of us suffered alone and together. Share and share alike.

Kate and I engineered clandestine letters, phone calls, and meetings. I was doing the unthinkable: betraying my most deeply held beliefs in family and loyalty while hurting the two people I had sworn to love and protect. I was destroying our dreams and our lives together. I was acutely aware I was doing all this. I saw it and knew it, yet i felt powerless in the grip of this insane desire to love and be loved by Kate. I would resolve time and again to end it and fail to act, until my heart finally broke.

Kate and I planned to meet in Boston while I was doing an annual VA check-up. Linda and Sarah were going to Ohio to visit family. Linda knew.

Their flight had been cancelled; the Ohio trip was put on hold. Confusion as to where to go, with whom, and when plagued us and left us in a limbo of indecision. I wanted to be with Kate in Boston; Sarah wanted to be with her family, Linda did not want to be alone. We all felt lonley, like we were being abandoned by each other. We were each deeply scarred by this time. We had reached ground zero. If we didn't go back to Wellington together now, we probably never would.

Linda, Sarah, and I were alone together in my room at the sink with a large mirror behind it. They were directly behind me. I saw them reflected, as in a carnival glass; magnified, clearer and larger than life. I was looking at them as two images thrown into relief in my rear-view mirror, receding from me as I sped away. I was, as usual, self-centeredly talking about how I needed the hospital staff to take care of me. With a voice quivering with emotion and in words overflowing with heartache, Linda asked, "Who's going to take care of me?"

I looked up into their eyes, and saw Linda and Sarah as they were, totally naked in their pain and loneliness. I gazed into the abyss I had created and sustained. I saw the pain I had wrought on these my loved ones who in no way deserved what they got from me. My moment of truth had come.

My passion for Kate evaporated as my love for Linda, Sarah, and our family shook me awake at last. Their pain was my pain; their loneliness mine. I had known our hearts were breaking. At that moment I saw it written plainly in the lines of our faces. All my excuses and justifications melted away. My defenses were in ruins.

"I will take care of you", I vowed. I resolved once and for all to make amends and rebuild the ruins of what was once so precious and beautiful.

These words of the eagles, at once poetical and profound convey a message pregnant with meaning for me:
"You're walking a wire,
pain and desire,
looking for love in between..."


December, 1978 + Wellington, ME

Case #4: After a warm, sweet time with close friends over dinner, drinks, music and after an intimate, loving evening together for us, Linda and I awoke in each other's arms at 4:00 am to the sour smell of urine. We discovered an entire night's output of urine (about 2 quarts) soaked into the sheets, blankets, mattress, our pajamas, and all. Even onto and into the pine board floor, from which the odor would never fully disappear. The entire situation was such a huge mess we had to call a trusted neighbor and friend, one whose funkiness was beyond reproach, to help us out of this jamb.

When he arrived, fresh out of a warm bed on a cold night, he took the whole thing in stride. "Son of a bitch, Gill, you can't fuck in this!" There wasn't much funny about it, just another miserable injury thing. This one hung over us like a proverbial sword, forever, or so it seemed. Every morning's wake was another possible repeat of yet another impossible situation. These incidents i have described are very like the tip of the iceberg that sank the Titanic. These episodes were getting much harder to accept and harder to take. The Titanic was closing in on the iceberg at an accelerating rate. The closer we got, the faster we moved.

As out one-time union became two bewildered lovers betrayed by circumstance, closeness became frustration, intimacy wariness, spontaneity vigilance. We were adrift; the only constant was the direction. Apart.

These repeated episodes and others, such as the Kate ordeal eventually left us exhausted and washed out. Linda simply had no more to give. We were watching out love die, scene after scene, which felt to me like fishhooks pulled one by one out of my heart.

What followed seemed to have an inevitability of its won, like an out-of-control avalanche headed to the Swiss village. We didn't have the interior resources left to stop what was happening. Anger, frustration, blame, recriminations, regret and remorse led to shouting matches, border wars, uneasy truces, amnesties, negotiations, reconciliations, and a seemingly perpetual stream of scalding, bitter tears. We swung wildly from 'silhouetted anger to manufactured peace'. Our marriage and home had become a battleground.

Wednesday, December 2, 2009


1977-1978 + West Roxbury, MA

We are about to radically change gears and embark on a discussion of those most delicate and forbidden of quadriplegic subjects: sex, defecation and urination. Not in that order, however. As we shall see, they are intertwined in a hideous ballet like witches around a campfire concocting unspeakable misery, a la Mac Beth. As a preemptive measure and to reduce my personal exposure, to quote a lawyer I know, allow me to warn you the following is not for the sexually squeamish, nor is it directed to the perverts among us.

Perhaps those who admit to such qualities should move on to a less offensive section, like the one in which a former client discovers her husband having sex with the family dog.

I hastened to add for my crippled kin that I speak strictly for and about myself. What follows applies to no one but your well meaning, if at times misguided, author. An advertiser I am not. Unfortunately, I will NOT discuss the mechanics of the sex business any more than is necessary, lest my dear beloved Mother role over in her grave. Even I wouldn't go that far. Those disclaimers duly noted and entered into the record, I hereby depose and state:


Circa December, 1977 + West Roxbury VA Hospital, MA

Several of the stories that follow have a decidedly R, if not X rating and may be unsuitable for some. Parental guidance is strongly advised.

[Note to reader: I am aware of the psychological implication regarding speaking of one's penis by nickname and in the third person. Lodge your complaint as you will.]

I had been injured about three months; so far, Erectiod (E for short) worked just fine. At times too fine. During bed baths and other close encounters of the intimate feminine variety, what with naughty, nubile nurses softly sponging sensitive sexual sites, blood would flow and E and I would stand at attention in a combination of embarrassment and pride. You could say I was swelling with pride, if dumb puns were your thing, that is. It seemed E could stand at attention for hours. I was elated. 'I'll be no eugenic, but a medical marvel both here and when I get home', I thought. These stories should give a sense why my optimism was like that of a man on the gallows believing the rope would break. Fat chance!

To repeat: Our ward had a very attractive, sexy, and hot-blooded late-shift nurse we called 'The Pecker Checker'. She had the habit of nightly, surreptitious, hands-on inspections. Like a conscientious lamplighter of olde, she would silently steal from bed to bed. She alone performed this task.

Oddly enough, all the guys were quite fond of her. Funny, that. Following her much-anticipated nocturnal visits, during which I'd feign sleep while being on the verge of a sexually-induced stroke, E and I would bask in the glory of our unerring ability to pitch the tent of erectile success. Consequently, being as I was one of the fortunate ones, I thought, "at least that's OK." From time to time, what one hand giveth, so to speak, the other taketh away. You can probably see where this is headed.

That was generally true of what was euphemistically misnamed the "Bowel Program', which was really no more than shit at all costs somehow, anyhow. But only at the proper time. Or else. 'Or else', was never explained at length, exactly, but we all pretty much got THAT picture. Anyway, horror stories abounded. In fact, several follow. I had very few difficulties in that quarter, no 'Blow-Outs', my regularity was regular, and I was relieved again. Yeah, Ray, good luck with that shit thing.

Ditto Urine Management. You've got to love the terminology, as if there really were a manager appointed for this purpose. No, simply put, it means get the piss flowing copiously out of your body by following the prescribed regimen: drink gallon of water daily and quarts of pure cranberry juice until you're gagging on it, swallow about a zillion milligrams of vitamin C, get plenty of exercise, don't smoke, don't booze, twenty years of schoolin'...I was one of the conscientious few; did what I was told. I was a good example of the well-adjusted quadriplegic.

All this was happening while I was struggling not to die inside. Behavior in the spinal cord ward that appears at face value to be 'well-adjusted' resembles a band aid covering a festering sore. Beneath an innocuous surface lays depths of pain and anger no one truly wants to see. So it was with me. I dutifully jumped through the necessary rehabilitative hoops and appeared to be the model of acceptance.

Meanwhile the random and arbitrary haunted me, like Banquo's ghosts. Witness: Dave was in a car crash with two friends. One escaped unhurt, one died, and one was a quadriplegic for life. A woman in a removed ward had slipped, twisted her ankle, lost her balance, and fell to the sidewalk on a clear, sunny day. No motorcycle accident, no diving mishap, no fall from any height, no reason at all. Random and arbitrary. Within a month of my fall, a friend fell almost twenty feet from scaffold to ground. He didn't have a scratch.

As I progressed week-by-week, one question plagued my effort: Why me? Why not some guy in Iowa or a drunk driver in Wyoming? Invariably, the silence was deafening in its intensity. No response, or the one below, opened out into endless anguished surmise. At any rate, blank silence was one of the two responses I got. The other was the inquiry without answer: Why not you?

Things worked. E E'd, poop pooped, and piss pissed. So, all in all, other than the horribly crippled for life thing, matters could have been a lot worse. Things got worse, much worse. And it didn't take long.

One of the villains in this patricular piece was bladder infections. We all know that bladders infect. For me, it went like this: as a consequence of incontinence, urine collected there, bacteria grew there, and infections infected there. It was serious business. One nasty little poser could bring malaria symptoms: fever, chills, nausea, extreme fatigue, kidney infections, stones, failure, and, eventually, death. So, to keep the urine from collecting, my VA doctor said he wanted to surgically cut the bladder neck (that's the narrow opening through which urine flows out), cauterize the cut (scorch it with some noxious chemical, like mercury, so the cut never closed), and the urine would run away easily, carrying the nasty little villains to freedom, like Orca to the ocean.

Linda, who had her own stake in this, was very apprehensive and suspicious about the sexual ramifications. She didn't particularly trust this Doctor, whose bedside manner was like that of Lady Mac Beth. "Oh, no," said the surgical Scot, "not to worry, there are virtually no sexual side effects". That 'virtually' hung out there like Mac Beth in Duncan's chamber, ominous indeed. The Doctor was adamant and I folded under the pressure.

Linda was very angry. She was always more sharply attuned than I. Things seemed OK at first, so I breathed easier. Initially Erectiod did what erectiods do, urine flowed freely, and the shitting was OK, happily so. Linda and I were anxiously optimistic and pessimistic in turns, fearing that, for our ages, as the sex went, so would go the marriage. I mean, after all, she didn't marry Tiny Tim. However, in a few short weeks, infections and other bladder complications followed. The nefarious, knife-happy Doctor lobbied hard for yet a second operation like the first. Like before, I consented. Linda fumed.

Rightly so. Mac Beth did to us what he he did to Duncan. E was never the same: never as responsive, never as long-lasting. In today's erstwhile sophisticated jargon, this would read, 'erectile quality was problematic'. This was long before Bob Dole discovered his little blue friend Viagra. As the sex went bad, events conspired and multiplied in suit. Paraphrasing Shakespeare's Rosencrantz: "The cease of...[sex].../Dies not alone; but, like a gulf, doth draw/What's near it with it...". The following examples, drawn from many, should prove the point.