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Send Mail June 16 2001

Fond Memories of the Future  
Michael J. Kanouff   

If all my 18 newsletters comprised a book, I would need a final chapter.  The newsletters will go on, but I do need a final chapter to a book.  How about fiction?  Why don’t I just imagine the very best for myself and write as I would like to see the ending to this book?  I could construe a cure from all that I’ve read about advances in spinal cord research. What could I see as the best of all circumstances?  

As an ideal ending to a book, this fictional account touches on every aspect of a fulfilled life— health, a love interest, financial success through an appropriate livelihood.  This is a great idea!   Using current medical research, this cure for spinal cord injury is very feasible and very near at hand.

The final chapter is written sometime within the first years of the 21st century  -Micheal

  Rough Landing 

 The weather is turbulent around Cincinnati.  I’m sitting in a coach seat strapped upright with three sturdy belts.  An earache makes itself known on the descent.  Every couple thousand feet my head explodes with pain until I hear air venting.  Then a respite for a couple minutes until my other body pains, from being immobilized for the nine-hour flight from Hawaii, clamor for my attention.  But I can turn them all off with one thought: The Cure.  

Well hopefully; officially, I’m going for Beta testing of a promising cure for spinal cord injury.  As a joint project of the University of Ohio at Cincinnati and a private research group, they have produced stunning successes with their first human trials three months ago. With 250,000 spinal cord injured in this country alone, this research group kept a low profile to prevent being overrun with volunteers. I was able to slip in because of a “headsup” from a friend.  He came across the investment offering of a promising biomedical company and gave me the suggestion to contact them as a volunteer for treatment.   

I got on their list early, early on enough to say “no” to being an alpha research subject.  Alpha people go first and take most of the risk.  Beta people go with some of the kinks worked out of the system. I’m too impatient to be a Charlie or a Delta.   

Above all, I love being with an Eve.

Stars in Her Eyes

Eve complemented my writing she found on my web site three years ago with an articulate, thoughtfull e-mail.  I responded in-kind and she responded back. This began a ping-pong, back and forth communication by e-mail and telephone. For the past year little  video cameras on our computers have given us moving pictures of each other. Our correspondence grew in-depth and was later to be fleshed out with a rendezvous in Cincinnati.  She would join me from France where she taught school as an American in Paris.  Her work at the clinic would help flesh out her master’s thesis “Major Medical Crises: The Direct Access to the Soul.”

Eve met me at Cincinnati airport and would be my training partner throughout the three months of the trials. After orientation, x-rays, physical and psychological checkups, Eve and I settled into a routine of physical therapy and injections. We were deep friends from all our corresponding but once we were face-to-face, a different alchemy took place. As usual, I had to have a 2x4 smacked upside my head to notice a woman’s romantic interests.  

 Six weeks at the clinic, one of her questions had a particular charge: “Has it been hard to have a relationship since your paralysis?”  Many people have asked that before, so I gave her my standard answer: “Managing my life stole any extra time that I could socialize with others outside my house enclave.”  When I sparked with someone, the fire faded soon after she saw more of the backstage efforts needed to keep me a working order. I finally surrendered to the possibility of not having a partner this lifetime.  I stopped aggressively courting anyone, and waited for someone to “see” me.  If she saw all my trappings needed for basic health and still took the first steps towards getting to know me, then would meet her more than halfway.   

My casual gaze at Eve’s face snapped into a clear focus of her eyes with her question.  “Can I take you to lunch,” she grinned coyly. My blood drained from my face.  With my next breath, a dragon climbed up my legs, through my belly and chest and swirled inside my head.  If I hadn’t said  “yes,” I’m sure this spiral of recognition would have condensed into tears in my eyes.  I am sure my face became beat red.  She was looking into my eyes and saying to my soul, “Lets play.”  

Eve was 5 ft. 3, round face and straight black hair. Her petite frame was conditioned by her passion for running marathons.  Even though we were eye level to each other, her heart and wisdom towered over me.  She had degrees in comparative religions and psychology.   

We were both smitten.  I do not know what to be more excited about, our late-night snuggeling or the fire spreading across my body from the injected cocktail.  

A Growing Concern 

People in white coats nodded in agreement at the success of our first phase. The daily injections of the cocktail, affectionately called by the 18 people in our group, “Kick-a-Poo Joy Juice,” was working!  This cocktail of three nerve growth stimulants turned off the gene at the end of the nerve cell which tells the cell not to grow.  The gap in my spinal cord was shrinking as both sides of the severed spinal cord was artificially coaxed to grow in search of a fulfilling contact on the other side.  

The first contact was a fire throughout the body, very similar to the awakenings of an arm or leg that had fall asleep. Except that it was stronger and its constant nagging never went away. I felt like I had hives all over my body.  A certain drug quieted the fire enough to be barely bearable by a bear bottomed bear, but not for me.  I was in pain.   

Another drug was called out to tone down increasing body spasms and the twitchings.  For a while we looked like a clinic treating advanced Parkinson’s disease.  For more than awhile I needed heavy sedation just to sleep at night.  I kept waking up, thinking somebody was jumping up and down on my bed.  It was only my limbs flopping about.  

Even with Eve’s encouragement, I began to doubt that I could continue keeping my sanity while the fire storm of nerve reconnection continued.  If I wanted to walk again, could I go deep enough inside to find what it takes to survive the heat of being a crysalis and come out of this a butterfly?  

Except for sleep, I was on fire 24 hours a day.  My arms jerked uncontrollably like a newborn baby.  I was dangerous in my electric chair.  Other quadrapeligics from the Alpha trial visited us for support.  Most of their pain had subsided and they were in varying degrees of control of their body.  It was a great relief every time they came into the room.  They were like angels calling from above that we were on the right track and to stay the course.  

Embracing the Tiger

“Try at it again,” cooed Eve and she braced my foot in her lap.  I was trying to consciously move my big toe and had yet to succeed.  General static kept my leg and foot squirming but nothing came from my willful intention.  I was in the newborn phase according to the clinic researchers.  The spinal tissue, with awaken nerves, are encouraged to grow across the gap and connect with another nerve trying to meet it halfway.   

Unlike England and France’s Chunnel, my nerves are meeting in a haphazard way.  The fire comes first as the nerves contact, then the spasms as they come to understand who is receiving and who is transmitting.  Finally the transmitting nerves have to get re-associated in the brain.  

This is similar to a newborn baby’s nervous system, sans fire.  They have their nerves intact but they still need to know how to control their body consciously.  Practice makes perfect for them and for us.  

I concentrate on the big toe because Eve and I can sit face-to-face. The theory goes that if you move the body and consciously pretend that the volition is yours, then the neural network agrees and makes the connections. We just don’t know when that will occur with the people in our trial.  We are all unique with different levels of injury and length of time injured.   

“Eve, I’ve got to stop,”  I said just shy of collapse. “The pain is so great I can’t concentrate.”  The pain was  everywhere, particularly around the part I’m trying to move.  We called over the clinician on duty.  I wanted a pep talk.  

“One of the keys of pain management is to go towards the pain and embrace it,” said the doctor in the white coat.  “This sounds funny but familiarity takes the edge off intense pain.  If you can embrace it Michael as a friend who is helping you to walk, your pain will ease up.”  I knew she would say that, it just helped hearing it again.   

Another tool for pain management—distraction.  We decided to stop early that day and go to a movie at the giziliaplex theaters down by the river.  Cincinnati has long renovated its downtown area where our medical center is located.  It was a short roll to the theaters and most of it along the winding sidewalks along the Cincinnati River.  

Eve rode on my lap, cuddling us both up in a blanket to protect us from the cool fall weather.  Her head leans back to nuzzle my neck and whispers in my ear,  “I don’t want to leave you.  You are the most interesting thing in my life and I want to go back to Maui with you.”  

Well, talk about a conversation starter.  We never got to the movie.  We did see a couple sidewalk cafes where we talked and talked and fantasized and laughed and talked.  

This Little Piggy Went to Market

Eve and I start yet another day of injections and a cycle of the assisted physical therapy equipment.  I’m strapped into various machines that mimic body movement.  I go along for the ride and convince myself that I’m moving my legs.  The continual practice of the mimicking movement slowly makes the neural connection.  Thankfully, the more I work with an area, the more connections are made and slowly the fires cool. Now that the fire is retreating, our therapy goes to 12 hours a day. This is getting fun.  

After lunch we settle into array of sunshine streaming through one of the tall windows in the workout room.  She sits facing me and lifts my foot into position on her lap.  I go into my routine of “moving” each toe as she assists.  

Three minutes later we are both drop-jawed when my toe lifts for the third time on my command.  We hug and cry in each other’s arms.  It’s working, everything is working.  After years of just blind trust moving me forward, I now have the first tangible evidence that I will walk again.  

I was “awash with tears,” as my friend from Atlanta used to say, so Eve stood up in the middle of our group therapy room and yelled at the top of her lungs the required “Bingo!” Everyone gasped and came over to see the proof of my toe moving the required three times. The cascading return had begun.  

Caution Signs

Everyone in our trial has new aches and pains.  For years we sat on joints without regard to wear and tear.  Now that our sensation is returning, our joints are going to scream for awhile.  With our ability to move muscles we have another challenge. Our bone mass is fragile and always threatening to break with the slightest infractions.  It seems most of us in the trials have lost so much bone mass that it would be easy to chip a hip bone with a casual fall.  Any age person will lose bone mass if they don’t put pressure on the bones—use them or lose them.  

Desperately weak muscles must spend up to a year gaining strength before being trusted to carry the body.  Our home therapy protocol is to start very slowly.  With my bone mass, I may never lose the friendship of a good walker, the kind with wheels, to prevent a chance stumble. The good news is that the drug companies are bound for glory to help the baby boom generation handle their future arthritic pain and osteoporosis with pharmaceuticals.  

Icing on the Cake

One evening, Eve slips into my room and cuddled up beside me.  Her lips tickled my ear as she talked.  “You cannot get rid of me Mr. Kanouff,” she threatened as if I wanted to stop her.  “I’m coming to Maui to play life with you.” To have Eve as a partner went beyond what I dared not want, for fear of angering the Gods.  “Yes, I am honored to have you in my life,” I said through a smile.  After three months of intense daily interaction and three years of correspondence our love had matured.  “I can’t see a life where you are not walking by my side Eve,” I whisper.  “Please stay with me.”  

Quadrapeligic’s are always getting married and living a full family life.  But when you’re a single quadrapeligic and you’re sometimes in bed alone at night trying to get asleep through the wall of pain and fear, it’s hard to believe another person would want to join your life.  When a beautiful goddess steps up and says that she wants to join that same life, you’ll never doubt that God exists again.  

I held her and thought of what I liked the most in her. She didn’t let my paralysis get in the way of our connecting, having quality time together. Eve was able to move like a ninja around all the people and processes of my life.  At times she will hover in the background until an aide is complete with some process, then she pounces.  Grabbing my attention,  “Hey you,” she said jumping on the bed and pulling my collar to meet her nose to nose.  “Do we have time for a quickie before the guard gets back?” she growled. “You bet, ninety seconds minimum,” I said looking left and right. The ninety-second kiss slipped out of time.  When the door handle turned we giggled like kids and flaunted our attraction for each other to our friend the orderly.  

Eve keeps reminding me to break routine.  It’s so easy to sit back and let the outside world take care of you.  Slipping into a rhyming routine seems to be enough interaction with life but really the routine is lulling you into sleep, a waking sleep filled with the deeper pits of mediocrity.  I’m excited to work on projects with her. We both commit to having a personal relationship filled with the depths, not the limits of spinal cord injury. As I think about the possibilities of my new life, I’m excited to be going back to paradise for my recuperation with a dear friend and ally.  

 Going Home

At the end of three months we are asked to leave. No one feels complete but the process has started. The Beta version of this trial is to be replaced with the Charlie group.  We’re given complete home therapy plans with an 800 number to a clinican.  In addition we are invited back for a check up every four months.  We’re reminded daily at our lectures not to expect a 100 percent return to life as known before the injury.  “Celebrate the little successes that happened everyday,” declared the head of our program. “If your hand movement returns to grasping, celebrate all the different things you can now lift.  Walking should be the last thing to celebrate.”  I agreed, walking is not as near a reality as getting the use of my hands and arms back.  I’m close to my first goal — becoming a paraplegic after ten years a quadrapeligic.  

Maui on my Mind

It’s time to clone the clinic.  If the upcoming Charlie trials are consistent, this process is close to being mass-produced for the benefit of the one-quarter million spinal cord injured.  I’ve spoken with the heads of the organization and we all feel the island of Maui is the perfect location for one of the many clinics.  The process of healing is so clean and simple, Medicare, Medicaid and insurance companies will jump to fund the three-month cure in order to avoid the massive ongoing cost of caring for spinal cord injured.  What better place to go through a healing than Maui.  

Eve and I would be on the board as consultants, and on the payroll as the perfect counselors at a beachside clinic where someone’s first steps could be on the water.  When the regeneration cure comes into the life of a paralyzed  person, it will bring up a spectrum of personal issues that can be addressed during their stay at the clinic. Our focus would help guide a person out of the nightmare of unresolved emotional traumas surrounding spinal cord injuries.   

Offshoot research of this same clinical technology are attacking the great scourges of Dementia, Alzheimers, Stroke, MS and other nerve and brain cell diseases.  We are entering the golden age of physical health care.  These and other major medical breakthroughs brought on by gene therapy and the Genome Project are revolutionizing medicine. I’m one of the pioneers who will remember spinal cord injury personally and talk about the “bad old days” before nerve regeneration.  

In  “Our Brave New World” no one will have to be left in the state of disrepair, warehoused and out of sight.  The overall physical health of our society 30 years from now will give us no excuses to avoid addressing the real injury damaging everyone—the healing of our inner spirit, our soul.   

Therapies and protocols inconceivable today, will light the hearts and souls of the Emotionally Damage; an illness far worse than a spinal cord injury which only last one generation.  An Emotionally Damage soul is a self-perpetuating time machine of unnecessary pain and suffering that is handed down throughout subsequent generations.  

The researchers who refine these techniques are now walking on the planet and will go down in history as the midwives of the first generations of humanity who will have learned to shed their disabilities of pain and fear.  Complete generations will learn to Love to their highest potential.  After that, walking is a breeze.  

Epilogue

 This chapter of fictional possibilities is a small segment of the vision I have for my future.  I’m not living in denial of the present, just making sure I’m ready for the ring on the merry-go-round.  I suggest this for anyone with a medical crisis.  First, appreciate what you have by living day-to-day.  When there’s time and energy, look forward and imagine your future with all its possibilities.  This will be a defense to the downward cycles of cynical thinking and gives you reason to look forward to life’s gifts in whatever form they come.  

Again, it's anyone's guess as to the cure for spinal cord injury.  My heartfelt desire is that it not require surgery with teams of medical specialists.  Only the elite would be cured for years to come.

As we wait for the cure, I would like to see more care.  Too many disabled people are warehoused, living in an existential nightmare. I'll write more later about this condition.  

Due to my community and family, I really am leading an above-average life of a disabled person-- Thank you for your support. Life is always getting better.

E-mail: Michael kanouff@maui.net

Michaels Web Site: From The Edge


Copyright © Michael J. Kanouff  This article may not be resold, reprinted or redistributed in any manner, print or online, without prior written permission of the author.  Reproduced in Paralinks with the expressed consent and approval of  the author.

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