To the Worlds Wheelchair Culture
E-MAIL  PARALINKS 07.04.05
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Chapter One: Born of the Water

 

I closed my eyes and waited for the tumble of water and sand to subside. The Frisbee had been thrown low, but I made a heroic leap for it anyway, thinking the surf would cushion my fall to the sand; it did not. My head burrowed hard into the sand while the rest of my body somersaulted. My neck snapped. When I couldn’t move my arms to push up out of the water, I realized instantly that my life was going to be totally different-if I survived.

Moments before, I’d been sitting on a sand dune, gazing out at the ocean and looking intently within, at the spectrum of my life. I had yet to encounter a beloved in my life. I was at a fork in the road with my career and could go in either direction, both inherently flawed, but also deeply fulfilling. Unfortunately, there was more of the former in both cases, creating an inner angst that was tearing me apart. I was despondent and feeling very alone. I thought a little Frisbee might help…

Face down in the shallow surf, I struggled to conserve my last lungful of air; otherwise, I would burn oxygen and gasp a lungful of salty seawater. My only hope was that someone would see me floating on the water, motionless, and quickly investigate. To panic risked losing my narrow window of survivability, so I concentrated instead on the beautiful dance of sand and water currents beneath me. Simultaneously, I mentally cried out to my friends on the beach, “Come get me! I’m not fooling around, I’m really hurt!”

Burning lungs would soon force open my mouth. Eyes opened wide and stinging from the salt, I screamed inaudibly for help. I was seconds from losing control, seconds from taking the breath that would be my last, when all of a sudden the sand sprouted a forest of hairy legs.

Forty-five seconds had passed before several vacationing paramedics noticed me face down in the water and instantly reacted. My friends, who thought I’d been practicing some exotic water meditation, sprang into action only after the paramedics had already lifted my 6’6”, 190-pound body out of the sea. I gasped, “Thank you, oh thank you!” while they yelled, “Support his head!” to my friends. Two other angels present were a husband and wife medical team who taught at Yale. The vacationing paramedics and two Yale doctors carried me from the water, placed me flat on the sandy beach, and with donated belts immobilized my body on a surfboard. Maui must be a magical place, to have had these professionals serendipitously at hand to act as midwives.

As we waited for the ambulance a friend held my hand, and I could hear her softly singing as I began slipping into and out of a euphoric swoon. It was dawning on me that my old life-with all of its pressure, tension and fears-had ended. All of my responsibilities were erased. Of course I knew tremendous challenges were ahead of me, but at the time, I felt like a newborn with no cares.

I also felt the presence of something much larger than myself, a focus of fate moving me along like a strong river current.

“That you, God? Or is it you, Dad? Are you watching this?” I asked haltingly. “If you’re there, I have a question: why am I so euphoric in the face of paralysis?”

Trumpets didn’t blare, nor was there the booming of a great voice. I simply continued my one-sided conversation, hoping someone was listening. Euphoria, as it turned out, was the best protection I could’ve had. Maybe this was the way God was talking to me, by giving me the ability to see the promise in a horrible situation. Maybe it was pure grace that I immediately latched on to the potential for good and continued to keep a sharpshooter’s eye on it.

Sweating under a load of equipment, the ambulance team slogged their way across the sand. I was delicately transferred to their stretcher and firmly strapped down.

“But, but, isn’t there supposed to be a helicopter?” I thought. “One of those Coast Guard choppers would do quite nicely.”

The beach was secluded by a semicircular wall of lava thirty feet high that had oozed its way down to the ocean 200 years before. The steep, narrow footpath over the lava wall was too precarious for two paramedics to traverse alone, so nearby surfers were conscripted to hand-over-hand the stretcher to the other side of the volcanic flow. I couldn’t bear to watch myself dangling in midair, so I closed my eyes and went back inside. And the paramedics got me safely inside their ambulance.

Although I’d received no direct response from either God or my Dad, I did experience a glowing fire in my chest that left me swooning and serene. If I had to choose between a Godless cause-and-effect universe or a life filled with angels conspiring with a beneficent higher intelligence, then I would choose the latter. There was a reason for my injury. I couldn’t see it then, but I was sure there was one.

Bang! With that thought, the ambulance hit a pothole. The rough beach road bounced my head upon the stretcher, painfully jarring me back into my body. My head was on fire. Oddly, the pain I felt wasn’t from the paralyzing neck injury, but from the sand embedded in my thick, curly brown hair. It dug into my scalp like tiny shards of glass. That sand would haunt me for the next three days. My head was put in traction, and no one wanted to wash my hair for fear of further damaging my spine.

I would have many conversations with God in the coming years, and a few times He even talked back. His voice was heard in the lessons learned through painful experiences, which forced my eyes to see and my ears to hear, and in the heart-opening realizations of the inherent divinity of human nature.

ER

Word of my injury had spread like wildfire across the island. Over thirty friends raced to the ER, overflowing the waiting room. Seated side-by-side they waited for news, some dressed in their Sunday best, others fresh from the beach in their swimming suits.

The initial injury trauma didn’t cause the major damage; rather, subsequent swelling of the spinal cord in the vertebral column had choked off the vital blood supply to delicate nerve fibers. To prevent further damage, the emergency room staff at Maui Memorial Hospital continued to administer the anti-inflammatory IV drug started in the ambulance.

Once the ER staff had stabilized me, they then administered tranquilizers and pain medications-none of which helped the searing pain in my scalp from the embedded sand. With a traction neck brace installed, I was loaded into another ambulance and taken to the airport. Next stop: Queen’s hospital trauma center, three islands away in Honolulu .

I was suddenly alone in the hold of an old twin-engine plane. My stretcher was strapped atop three rows of threadbare passenger seats. The forty-five minute, low-altitude transport further vibrated the dagger-like sand into my skull. Never had I experienced such pain! My only refuge was my breath. It was during those moments that I understood the value of Lamaze breathing for pain control. Deep, connected breaths kept me from losing it.

Intensive Care Conversations

Three ambulances, one airplane and numerous gurneys transported me around and from Maui until I finally landed in the Queen’s hospital intensive care unit. Left unattended for a few moments during my intake, I reviewed what had just happened.

The intense shock from the injury maintained my odd sense of euphoria. My known world had ceased to exist. Every petty fear and concern became totally irrelevant, my thinking had an unusual clarity and I sensed I was not alone. All of this was immensely comforting, as I remembered an ancient Chinese proverb that says, “The first step of a thousand mile journey determines your destination.”

I pondered, “If I am beginning a new life, I must see all of the good that could come out of this injury right from the start in order to protect my sanity. This could be the fast track to something great in my life. And if so, is this really an event to be mourned, or an initiation into some elite priesthood?”

The cacophony of the modern intensive care room around me faded into the background. My thoughts began to resonate as if I were in a large, silent hall. Realization of the gravity of the situation then pushed all thoughts from my mind. From the resulting stillness, a soothing reassurance emerged that wasn’t heard, just understood. “You are not going to die. This nightmare will eventually pass.”

“Good,” I thought to myself. “That’s the bottom line. Knowing that will keep me back from the edge of hysteria.”

“Will I walk again?” ­ I whispered. ­

“Will I be strong enough?” I wondered. -

No answer.

“What do I do now?” I asked silently

A certainty came from deep within that I shouldn’t look too far ahead or the enormity of the situation would overwhelm me. I was to stay in the present and live each moment fully, put blinders on my eyes and trust that I would be supported. Decisions and actions that would come from being totally in the present would be the conscious footsteps needed for this journey. Everything would unfold gracefully.

Despite facing one of the most trying health crises a person can experience, I felt capable and strong. Obviously there would be intense challenges ahead, but for the first time in my life, I had permission to be weak and vulnerable. Paradoxically, this opened up the entire spectrum of living to me as never before. I felt reduced to nothing, and thus could become anything.

“Will I be happy?” I mused.

Another wave of euphoria washed through me. As it receded, I was left wet with the knowledge that my life’s purpose was on track, a bizarre feeling to experience when strapped tightly to a table with fluid dripping into and electrodes draping off of my body. But there it was: a sure knowledge that I was doing what I was meant to do. This knowing was as deep and true as the knowledge a woman holds that she is pregnant.

Any doubt about my life’s purpose vaporized without a trace. The most important time in my life had begun. I couldn’t see ahead around the bend on my new road of life, but I knew where I’d been before.

Past Life

If you want to get physically away from civilization, Hawaii is the place to go. Centered thousands of miles from the nearest landfall, in the middle of the Pacific Ocean , is a string of tiny islands including Maui , which is 30 miles long and 10 wide. How the early Polynesian navigators found this string of pearls in the middle of all this water is beyond me. I just got on an airplane in San Francisco in 1985.

I knew Hawaii used dollar bills, zip and area codes like the rest of America , but to me she was a third-world country, an adventure. My first taste of Hawaiian life was the island of Maui . She had a wonderful old airport without passenger tubes snaking to each plane. I exited onto the top of an old staircase leading to the tarmac. The air was soft, humid and thick with the scent of exotic flowers. I felt instantly and sweetly intoxicated, and wobbled down the steps with my camera bag.

I’d come on a rare vacation and halfway through my stay decided paradise was to be my next home. I later met many others who’d made similar snap decisions about moving to Hawaii . They’d arrived as tourists from all over the world and immediately fell in love with her nurturing weather, culture and environment. Then they all fell in love with each other as a community. Hawaii felt like the right place and they just stayed. The want ads were filled with return air tickets for sale.

Moving to Hawaii from California was a leap into the unknown. Like many other recent arrivals, I was searching. The beautiful climate, azure blue waters and wild, lush tropical forests were the obvious attractions. Or maybe it was the reverberating resonance of the native Hawaiian people that made these islands sacred and a lure to the sensitive soul. In any case, I knew Hawaii would be my next base of operations.

As a freelance photographer, I planned to live on Maui and frequently fly back to “ America ” to service my clients. At the end of my vacation, I was offered a place to stay. I was to share a house with some kindred spirits. Like members of a tribe, they would become the foundation of an extended family that would play a large role in helping me to survive my injury.

My home was a large, multiple-bedroom beach house. I was single and shared the house with a roommate and a seminar production company. Between working on the computer and taking photographs, I would often walk out the door and leap into the ocean, just thirty feet away. Life in paradise was good!

On the Trail of Tears

All my life I’ve been able to express my emotions through crying-not in huge volumes, but I could always tear at a good movie or a poignant example of the human spirit shining through adversity. After my injury, which put me in direct contact with my emotional body, I could cry at the drop of a hat.

I believe we humans protect ourselves from emotional trauma by muscle armoring, the tightening of our muscles in preparation for “fight or flight.” Every painful experience not expressed and cleared gets stored in our bodies. Chiropractors, Rolfers and deep tissue massage therapists all stay very busy because of the work they do releasing the muscle armor protecting our emotional bodies. Like a cage, this armoring holds in our emotions and deadens us to the joys of life. Notice how young children will laugh, clap and jump with glee while listening to a Sesame Street song. This explosion of life is a sharp contrast to the young adult stiffly jerking around on a dance floor, “trying to loosen up.” I make this point because of a profound gift I received from my injury-I lost most of my body armoring! I attribute my amplified ability to cry, laugh, feel another’s pain and absorb the beauty of a setting sun to the complete relaxation of most of my body’s muscles.

I could cry openly and readily; not mourning my condition, but celebrating the love I felt from all my friends. Every visiting friend at the hospital got a chance to cry with me. Every time someone reached out to me in the form of a telephone call, a card in the mail, flowers sent to my room or a visit in person, I thanked them with heartfelt tears. I felt no shame connected to my crying, just a deep release of age-old tension and a healing balm of love.

Back on the Landing Pad

“What is your social security number Mr. ahh, Canoe-uff?”

My eyes slowly opened. Towering over me with her head on the ceiling was a clipboard woman wearing a generic, pastel-colored uniform. This would be the tenth time I had rattled off my personal identity number. After more redundant questions, she finally allowed my waiting friends to enter.

My room in intensive care was a bit of a madhouse those first few hours. My feeling was that I had died and didn’t know it, and everyone was filing by to pay their respects. While my old self had indeed been left behind, I remained among the living. Instead of my next of kin getting cards and telephone calls expressing gratitude for me, I got to experience everyone’s gratitude firsthand.

People flowed in and circled my bed. The room would fill up between the blinking of my eyes. Some were asked to leave and visit in shifts. My heart exploded with affection for these dear friends who had dropped everything and hopped on the next plane to Oahu from Maui .

As they approached my bed, their expressions revealed shock and concern. Most wanted to hear rehashings of the injury. Some had frozen smiles, others blank looks of disbelief; many had watery eyes that melted the distance between us. But only a few of my closest friends had the courage to start the conversation that seemed it would never end. They asked, “What do we do next?”

The Never-Ending Story

Hospitals, insurance companies, Social Security, state health departments, Medicaid, nursing agencies, Medicare and the Department of Housing and Urban Development-once obscure bureaucracies to me-were suddenly an intimate part of my new world.

My dear friends took on the bureaucratic dragons and left me to face my own fire-breathing fears. The first agenda item was to contact my health insurance company. My friends were told that my policy didn’t include catastrophic coverage and would be depleted in ten days’ time.

My only option was to apply for Medicaid, health insurance for the poor. One friend jumped into my papers and proved I was (un)worthy; I made it under the financial wire of need by fifty-seven cents! My healthcare bills would be paid, thanks to the simplicity of my bachelor lifestyle. If I had owned a house, property, stocks, retirement fund-anything besides a car and $2,000.00 worth of possessions-it all would’ve been liquidated immediately to cover medical costs. It’s only after you’ve hit rock bottom that Medicaid will come to your rescue.

I became a believer that everyone should have at least catastrophic health coverage. With a high deductible, the yearly cost is very reasonable and if tragedy strikes, there are more choices for healthcare. Medicaid is a safety net only for the desperately poor. Any assets one has-a house, property, savings, investments-have to be liquidated to pay for medical bills before Medicaid even becomes possible. Medical expenses can quickly consume a family’s life savings or college funds, an added insult to injury that shouldn’t occur.

Ceilings: Boy, Do I Know Ceilings

I had been lying exclusively on my back since the beachside injury, so I really got to study the fine art of ceilings-first in the ambulance, moving on to the Maui ER, then on the plane to Honolulu, back in another ambulance and ending finally in the intensive care unit. From the molded plastic, easy-to-clean ambulance roofs to the ever-present drop ceiling panels, our horizontal protectors became my friends.

Quite often I would be rolled around the hospital on gurneys, to lie in wait for a testing room to open up. The hospital aide would disappear and I was left in the hallway without someone with whom to make idle chatter. So I continued my study of ceilings. If they were made of square, acoustical tiles, like the ones in high school with hundreds of little holes, I would try to count the holes. Then I would pretend they were stars and squint to see constellations of bunny rabbits or sharks. I was always critiquing each ceiling for its workmanship and could tell the age of the hospital wings by the degree of yellowing on the ceiling tiles.

From early on I kept thinking, “This is where more art should be hung. Vertical people have art on their walls. It would be nice if horizontal people had something of aesthetic value to look at in their rooms and hallways. How about a contiguous mural on the ceiling? The hospital should at least have something in the children’s wing.”

During my hospital stay, I was always lying on my back. I looked up only to see the ceilings of my room, the hallway, or the smallest confines of an x-ray room. In my peripheral vision, I could only see the stalwart walls that supported the ceiling.

I was always in a box.

One day I was on a gurney being transferred to another box, watching the ceiling go by overhead. Peripherally, I saw sunlight streaming through the wide doors of a hospital side entrance. I asked the orderly if we could pop outside for just a moment. He agreed, so we took a right-hand turn and glided through the electronic doors.

We only needed to go a few feet from the building to get an unobstructed view of just the sky. The colors overwhelmed me. The richest blue of tropical sky nearly blinded me at first. Dappled, fast-moving clouds were ceiling tiles in motion, ever-changing, performing only for me. Incredibly green coconut palm trees held up the heavens, even as they swayed in the wind. My eyes relaxed as they focused on infinity.

The experience only lasted a few minutes, because the orderly got nervous that we’d gone AWOL. We returned to the fluorescent-lit hallways and rooms. My old friends the white ceiling tiles were waiting for me, but I had a vivid and colorful memory to project upon them.

Dem Bones

“This will sting a little bit,” the surgeon whispered as he pricked my temple with the needle. The anesthetic was to dull the bite of the traction harness grip pinching both sides of my head. These pincers pressed through the skin until they had a purchase on my skull. My immobilized head was then connected by rope to a weight hanging off the top of my bed.

The surgeon wanted the swelling in my spinal cord to go down before repairing my fractured vertebrae. I had to wait five days with my head constantly clamped to the forty-pound traction weight, while bags of anti-inflammatory liquid dripped into my bloodstream. Unable to turn my head, I looked for repeating patterns in the ceiling tiles, a mind game I remembered playing in grade school.

With no outside window view to judge whether it was day or night, coupled with broken sleep patterns, the five-day wait to surgery seemed like an eternity. Only my diaphragm was breathing for me and I had an inordinate fear that if I fell asleep, I would stop breathing. Fortunately, I was rarely alone. A friend was almost always nearby to hold my hand. Even when I awoke from a tortured sleep, someone would usually be next to my bed, asleep in the reclining chair.

The Conversation Continues

The night before surgery, as the intensive care machines beeped and whirred, my mind drifted restlessly back to the questions, “Will the surgery be successful? Will I be left in pain? What if something goes drastically wrong?”

I was told these surgeries were commonplace and that I had nothing to fear. But it sure would’ve been easier to relax into the experience of going under the knife if God had spoken out loud to me, in person.

“Will I be all right?” I demanded out loud at around midnight , before the dawn surgery.

My roommate stirred, but again, no words from above. A quiet peacefulness washed over me instead. One thought filled my mind, “Surrender to this unstoppable momentum in your life by trusting that you’ll be supported through this transition.”

Or, as my father would often say, “Don’t worry. Things will always work out.”

One of the hardest things for me to do was to completely let go of control of a situation and just plain trust. At that moment of my life it was time for complete surrender to the professionals. What choice did I have anyway? I decided that I would just not worry, stay alive to each moment and try to get some sleep.

A deep serenity stayed with me as I lightly slept through to dawn.

Operation Adam’s Apple

Nurses bustled about preparing me for surgery, and I watched each procedure with fascination. Seconds before being wheeled out of the room, I remembered my camera. “When there is a break in the action, would you take a couple of photographs?” I asked one of the nurses. She smiled and slipped the camera under her surgical gown. My gathered friends, who knew me as a rabid photojournalist, merely groaned.

I reasoned that if my new life had a higher purpose, then it was worth documenting photographically. Little did I know then that my writing, rather than my photography, would ultimately paint the most vivid pictures of my experience.

I was wheeled into the surgical suite, where an injection washed my consciousness away. The doctors had described my injury as a “teardrop burst” fracture at the fifth vertebra. Bone was harvested from my hip for use to fuse vertebrae four, five and six. The neurosurgeon then incised a two-inch opening to the left of my Adam’s apple, cutting along a neck wrinkle to mask the scar. He moved the throat aside to gain access to the damaged cervical bone and fitted the harvested hipbone over the injury site. A titanium plate was then screwed over all three vertebrae, holding the pieces of hipbone in place and giving them support until they fused to the vertebrae, a six-month process. Finally, he stitched up the incision, and pouf! My life was saved. This was all magic to me. What an amazing world.

 

 

X marks the spot! This surgery was quite remarkable. To hide the scar, the surgeon cut along a wrinkle on my neck. I was deeply impressed with the whole procedure and quite glad I remained unconscious throughout.

Thank goodness for that titanium plate! If I’d had my injury a few years earlier, I would’ve been forced to live with a “halo” after surgery, a hellish contraption truly born out of a Middle Ages torture chamber. A ring of metal is screwed into the skull at various points all around the head. Metal braces that emerge from padded shoulders buttress the ring. The purpose is to support the head and prevent movement of the fusing bones-for six long months!

Open Around the Clock

The Queen’s hospital critical care facility had a very sane policy of allowing me to receive visitors around the clock. I was very needy those first two weeks, and the nursing staff couldn’t always be by my side. So the call was put out and in came the friends, three shifts a day around the clock.

I called for assistance often. Not being able to move was a new thing for me, and I needed help eating, brushing my teeth, scratching my nose and adjusting my television. I had to have letters written, phone calls made, decisions decided and my hand held.

There was such a flow of people from Maui that I shipped my car over to Honolulu for them to drive to and from the airport. Folks had completely stopped their normal lives to camp out on a La-Z-Boy in another city, performing service under stressful circumstances. These volunteers formed a bond that linked them on a deep level. From the stories I heard, many became fast friends because of their shared experience. I believe their lives grew richer from those displays of compassion, because it just feels good to give.

My mother and third eldest sister flew in from the Midwest in time for my surgery. It was terrific having blood family at the hospital. There was nothing like holding the hands of my mom and sister when things were grim. They helped make some of the hardest decisions, including what kind of surgery to have and where to go for the two and a half months of rehabilitation. The first decision, about the surgery, was correct. The second, choosing the Honolulu rehab hospital, was, well… a challenging learning experience I could’ve done without. But I also had positive experiences of life lessons.

Kansas City Blues

Hand in hand with my physical therapy was spiritual therapy. Because the injury had released all physical responsibilities, my mind was able to cross onto the fast track towards a deeper self-reflection. The sheer enormity of the injury brushed aside all the little things that I had thought were important in my life, leaving me with a powerful, long-forgotten memory.

The time was the winter of 1974 and I was a student at the Kansas City Art Institute. One blustery night, alone and shivering in my studio apartment, I wrapped in a sleeping bag to ward off the cold (remember the energy crisis?). I was despondent and forlorn, but at the depths of these feelings an inspiration broke through. I promised myself, my God and family that I would do whatever was needed to make it in this lifetime-to fulfill the goal of knowing my soul’s reason for existence. I remember immediately wishing I hadn’t said that, because I knew the process wasn’t going to be easy, but it was too late. I couldn’t take it back!

So in conjunction with physical therapy, I decided to work through my core life issues. Every aspect of who I thought I was came up for review, like a spring-cleaning of the soul. Resistance seemed futile; my forced sabbatical from most activities of normal life eliminated all smokescreens to this kind of introspection.

I’d been given a life of minimal responsibilities-no children or spouse, no mortgage or debt payments and no professional expectations. I didn’t even have a pet! I consciously asked for this cosmic set-up, so I knew I had better take full advantage of this potent opportunity.

A medical crisis can be a powerful tool for spiritual evolution. This perspective has been the key to my recovery and has also changed my view of humanity’s ills. Rather than seeing wars, social injustice, environmental suicide and sexual dysfunction as proof that we’re all doomed, I perceive these illnesses as part of the process of Life unfolding, a new Life struggling through the birth canal.

There is a need in us to associate with others who share this vision of the Phoenix in all of us, raising its wings from the fires of transformation. We can help keep each other from falling into pits of mediocrity and depression by holding the vision of a higher process at work. My loved ones constantly whispered in my ear that there was a transforming reason for my injury, to which I nodded in agreement, smiling.

I really went for that Frisbee and although I didn’t wish to be paralyzed, once I was in the fast lane, I decided to make the most of this incredible momentum of life.

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