On Being Disabled

Surviving and living with aftereffects of a stroke.

On Being Disabled

Michael McCann

I have a physical disability, a partial paralysis of my right side, affecting my right leg and shoulder and sense of balance It stems from a stroke that I suffered in May of 2012.  The direct cause of the stroke was the eruption of a blood clot in my lower brain stem. The roots of the stroke lie with sleep apnea and which I suspect I have suffered from since I was in my twenties.

The odd thing about sleep apnea is that the sufferer often remains oblivious to it.  I knew that I snored.  Who doesn’t.  It was not until after I was married that I suspected that there was something wrong with my sleeping pattern. Drowsiness during the day, poor concentration, physical clumsiness,  are all symptomatic of apnea.  Over a long period of time it can also contribute to a stroke.  For very short periods the body stops breathing. It will then start suddenly pulling in air.  Finally in 2008 it was detected and I was prescribed a CPAP mask.

In the early spring of 2012 Lyn and I decided to travel to Peru.  We had not been to Latin America before and we thought that we should see Machu Picchu before we got too much older. I must admit to some foreboding as we decided to go.  Peru had a reputation for political inability, corruption and rural terrorism.  To complicate matters I had a history of atrial fibrillation and was unsure how high altitudes would affect my condition but I had been to mountainous regions before.  Travel had taught me that most fears tended to be unfounded so off we went.  Almost as an afterthought Lyn bought travel insurance, the first time she had done so in all our years of travelling.

Peru consist  of four major areas the coastal plain, the highlands or Altiplano, the mountains and the Amazon jungle.  We hoped to see three of them, travelling from Lima to Machu Picchu.  Then we would turn south back to Cuzco, down to Lake Titicaca. From there we hoped to go back to the coast through Arequipa  and follow the coastal plains north to Lima.  Then everything changed.

May 18. We had a good day at Puno.  We looked out over Lake Titicaca, booked into a bed and breakfast, chartered a trip out on the lake for the morning.  Then we went out to see the town.  Four o’clock in the morning 19^th of May.  I had a vivid image  of pink.  My right arm then began thrashing.  Lyn,  a practical nurse by training, realized that something was very wrong.  She dressed me and then went out into the hallway looking for help.  I remember two odd things.  There was no pain, just a numbness paralyzing my body.  Secondly and perhaps even odder I remained aware of everything that was happening.    I knew that Lyn was dressing me.  I knew that she was going into the hallway to get help.  I knew that she returned with two men who lifted me up and carried me downstairs.  I knew that I was being put into a taxi.  There was nothing that I could do or say.  It was only later,  much later back in Canada that I finally understood what had happened.  I had contracted pneumonia.  Combined with atrial fibrillation and the thinness of the air in Puno. it had precipitated a brain stem stroke.  What probably saved my life was that it occurred about four in the morning when I was in bed.  If I had collapsed on a street the resultant internal bleeding might have killed me.

The taxi raced through the streets of Puno.  Twice the driver tried hospitals.  Twice we were turned away.  Then on the third try we were admitted  at the Pro-Salud Clinic .  As a stretcher took me in Lyn paid the driver.   He would not accept more than ten sols, equivalent to five dollars.

                In the clinic I was placed on intravenous and a respirator while Doctor Rendo and his staff tried to determine what was wrong.  Pneumonia was immediately diagnosed.  The stroke  became apparent after I mentioned that I was having double vision.  Most of the time I was struggling to breathe.   I felt myself falling with vivid images of people walking on their heads.  Always I felt cold.  Through it all I understood some of what was going on around me.  Both Lyn and Doctor Rendo contacted our health insurance company and informed them of what was happening.  I remember the doctor talking to Lima and to  the Health Insurance convincing both that my evacuation was critical. 

                To complicate matters even more the stroke had paralyzed my throat muscles making it impossible for me to swallow.  During the three days in the clinic the only nourishment I remember is sipping a slice of orange Lyn brought me.  Yet I did not feel hungry.  Even so it was evident that I would have to  be flown to Lima as soon as possible.  On the fourth day several stout men wearing uniforms arrived. They hustled me into an ambulance and drove me to the nearest airport.  I was flown across the Andes to Lima.  From Lima airport I was placed in an ambulance and siren blaring  raced through Lima traffic  to Ricardo Palmer Clinic in the San Isidro District of Lima.  What followed were long days tied to machines, coughing up phlegm, unable to move and knowing little of what was happening. Endless days of being attached to machines unable to do anything except long for home.

      Over and over the nurses repeated the same words. “Restez Tranquile.”    Be still.  Do nothing not that there was much that I could do.  My entire right side was unresponsive.  I could not move my right leg.  My right arm heavy as lead.   One brain seemed to be living in two bodies, one part responsive the other alien, belonging to a stranger.

Three weeks after arriving in the clinic I was finally brought home on a direct flight from Lima to Toronto, the only time I ever travelled first class.  In Toronto I was placed in a limo and driven to Kingston General Hospital.  A week later I was transferred to Saint Mary’s by the Lake where I  remained until the end of August.

The Recovery

In my first days in Saint Mary’s I was unable to do much more then turn myself  over in bed.  To be moved to a wheelchair the nurses had to use a hoist. The stroke had left my brain bruised and swollen making it difficult to turn my neck The erupting blood clot had severely damaged my sense of balance.  It had taken away my ability to control my right limbs and also left me susceptible to vertigo. To further complicate matters I had also developed pneumonia.   From this level t my recovery began.

I had always imagined that a stroke would result in a coma and a loss of mental awareness.  In fact I never lost consciousness and I was always aware of what was going on around me.  From the time of the stroke three physical factors assisted in my recovery.  I never lost feeling on my right side.  The feelings differed from the left side and certainly in the beginning I lacked motor control.  I often felt as if I was living in two different bodies  but the feelings were there.  The leg and arm  could eventually be brought back under control.  The second factor was that I had the great luck to be left-handed.  The stroke had left my left arm unimpaired.  This allowed me to write and to signal to people.  It would also prove invaluable  as I regained some degree of mobility.  The third and most important fact was that the stroke did not affect my cognitive abilities.  I could still think, understand my situation and develop methods and co-operate in programs that would assist my recovery.  Instead of being a passive inert figure I could become an active partner in my recovery.  One of the first things the PT instructors  had to do was to get me to realign my sense of balance.  They began with a mirror.  With it they made me understand that my mind still clung to my old sense of balance which had shifted to the right. I had to relearn how to sit up.  Then followed an intensive series of abdominal and leg exercises.  This continued for over a month.  In my own room I would practice standing  usually leaning against the bed or window still. I would even make a tentative step or two trying to get my right foot to co=operate with my left.  Pushing at the edge of what I knew I could do I struggled to gain one more step, one more moment on my feet. Now able to move around in a wheelchair I removed the leg supports to propel myself by my feet feeling that it was a way to learn to walk again. 

At home while still using the wheelchair I would practice standing and slowly began to walk again, graduating to a walker and then to a cane.  By spring I could hobble about and with the assistance of a walker and my son I  walked a block.  It left me exhausted, struggling with every step, but I did it.  The recovery goes on. For what progress I made I the doctors and nurses in Peru who saved my life, the staff of KGH, the Therapists in Saint Mary’s, the rock of my my life, Lyn and David my son.  Their combined efforts made it possible for me to walk again and to enjoy life.

As a former English teacher I have always been interested in the meaning of words.  During the time I spent recovering I considered what being disabled meant. A disability is a limitation that prevents an individual from doing something.  In considering my disability it occurs to me that there is not a human soul anywhere who does not suffer from some sort of disability, be it physical,  psychological, emotional,  or educational.  Disabilities should not separate people.  We are all struggling to do the best we can within our limitations. Disabilities should bring us together, reminding us that they are  merely part of being human.

Author's Note

Written in Canadian English