The Road Forward, The Path Behind

“One can talk good and shower down roses, but it’s the receiver who has to walk through the thorns, and all its false expectations” – Anthony Liccione 

I just read an article by a Chris Lenart describing the involvement of fathers in the lives of their disabled child.  I don’t know Chris personally and there is a 20 year difference (basically one generation) between us.  That is important to note because it does make a difference on perception and parental involvement.  I read his article through the lens of my own background.  Initially I was a little pissed off until I put it into a generational perspective.

I wasn’t upset with the focus of the article but my hackles do go up when I perceive more emphasis on “dis” than “ability”.  I didn’t grow up as a “disabled child” but I did grow up as a child with a disability.  My polio created some physical challenges but my disability was created by those around me, society.  I live by the philosophy that “my disability doesn’t define me, I define my disability”.  I have a life time of anecdotal evidence showing societies attitude defines disability.

My disability makes up about 20% of who I am but impacts a 100% of a persons initial exposure to me.  The 80% defined by my ability means I have to work a little harder to get that first impression a workable relationship.  How I present myself will be based on how well I am able to demonstrate my abilities to move past the “dis”.

I grew up in a time where institutional living was the norm.  Polio kids were hospitalize (some call it institutional) for numerous reasons.  Schools nor communities were accessible.  Medicine was no where near where it is today and seldom was the term “healthcare” even used.  There were few, if any, family support programs in the early baby-boomer days with surgical procedures being the primary treatment of the time.  This made institutional living easier for everyone.  Hospitals became households and your family were the other polio kids.  Growing up in that environment the emphasis was always on ability and we were encouraged to be self-sufficient individuals.

In today’s society there is a stigma attached to the “institutional” approach (which I can understand) however it allowed me a lot of opportunity in a generation where I would have otherwise missed out on so much.  Things like basic education, treatment or inclusive involvement in my community.  We didn’t all have “The Secret Garden” resources so the hospital became a community.

For the majority of my childhood my parents were nurses and the hospital was my home.  This was a generation when parents had little involvement in the medical aspects of their child’s life.  Parents had limited visitation opportunities, Wednesday after school for one hour (3:30 to 4:30pm) and again on Sunday for an 1.5 hours, siblings even less.  Between school, surgeries, various therapies (physio, OT, etc), activities like Scouts and Guides, arts and crafts, Friday movie nights, Saturday night teen dances, etc the hospital offered all of us the opportunity for community involvement that wasn’t really available in the mainstream community.

That was a normal life to me.  The traditional foundations of the basic developmental milestones and cognitive advancements that happened in any child’s life were established in that environment.  The concept of disability wasn’t there, in our eyes we were all the same.  The focus was on out ability, not a disability.  Continue reading

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The Precipice of Aging

The Precipice

For sixty years they had been wed,
In thirteen seconds they would be dead,
She is frail and oh so ill,
But to live without her he has no will.

Perching on the precipice high,
Holding her close with a smile they will die.

The love they have shared for all of these years,
Keeps them together shedding their tears,
He’s watched her strength drain from the illness inside,
But living without her he cannot abide.

Perching on the precipice high,
In love’s embrace they soon will both die.

He wrapped her warmly in her hand knitted shawl,
Then walked her slowly to the elevator stall,
From the fourth to the twelve the lift it did rise,
Then one flight of stairs to reach their demise.

Perching on the precipice high,
Hand in hand from a fall they will die.

Arm in arm to the edge they do walk,
Holding a gaze that held silent talk,
Just one final kiss that tasted so sweet,
To their death they did plunge on the dark silent street.

Lying all broken from precipice high,
Their love has transcended as their bodies do die.

Terry Wiens – Jan 2005

Summer is flying by faster than the speed I am able to get things done.  Life is like that, at 20 we think there is lots of time then all of a sudden fifty years has flown by and we start to realize how many of our agenda items are still waiting for our attention.  I have too many things left on my agenda that I have continually put off for time management sake.  What that “putting off” has taught me is that using time management as an excuse to avoid dealing with agenda items in the here and now leads to “crisis management” later in life.

As someone who has spend his life believing he was a social justice warrior I come down hard on myself when I see something I “put on the back-burner” having reach a crisis proportion.  Life can be crazy that way, we wait until we reach a crisis point and are forced to confront those issues we “tabled”.  We are now in the midst of that crisis and it has nothing to do with opioid’s.

The crisis I am referring to is the rising homelessness and suicide rates confronting the current generation of seniors.  I could provide an endless list of articles, news stories, reports and studies but I shouldn’t have to.  People just have to step outside their personal silo’s and open their eyes.  It’s all around us.  We shouldn’t have to be reading news headlines like those surrounding the Wettlaufer case or cases like Fran Flann (an 82 year old discharged from a Vancouver hospital to a homeless shelter) for us to recognize the crisis.  This has been going on for years.  We shouldn’t need private studies like the recent BC Seniors Poverty Report Card to understand the aging crisis. Continue reading

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Opening Your Own Door

Friends and Self

Our life has many ups and downs,
We question why we’re here,
But deep inside we know ourselves,
Loss of friends is what we fear.

Is it our expectations?
Or the way that others act,
That makes us really doubt ourselves,
Over how our friends react.

We put our faith in people,
And trust in all our friends,
So when our world does crumble,
We justify the ends.

But friendships can be fragile,
And often not so true,
True friends are more accepting,
Of all the things we do.

We do not need a preacher,
Or friends that leave us high,
The truest friends are those,
That stay when the others fly.

So recognize what’s in you,
You are the only one,
You truly can depend on,
When all is said and done.

Terry Wiens – Feb 2005

I wrote this in a very black period of my life, a time when I was surrounded by negativity and toxic people.  I have since moved on but was reminded after reading an article by a Dr. Perry that focused on toxic relationships.  It captured most of the components that went into the creation of this poem.  This was my experience and a strong example of what can happen when you wrap yourself in a blanket of love made up of toxic materials.

I have over twenty years experience as a mental health therapist both in a hospital environment and community agencies.  My sense of empathy was always my strength.  I even had it tested by participating in an 80’s study measuring empathy and I scored very high.  I attribute my empathy to having spend most of my formidable years in a hospital.

By the time I was sixteen I had spend eight years in a hospital full of polio survivors.  That has an effect on various developmental milestones and one of those was the affect on the anterior insular cortex, that section of the brain that enhances, among other things, empathy.  When you are 8, 9 or 10 years old verbal communication is as limited as the vocabulary you have developed and as a kids there are limitations.

A picture of the brain using different colours to highlight different areas of the brain.

The Insular Cortex makes up part of the limbic system

Many of us developed better skills at body language and, believe it or not, the emanations rising from ones body, often referred to as “body auras“.  This is an issue that many people just write off as “new age metaphysical crap” but as a ten year old entering puberty our minds were not littered with the filters of adulthood.  I became very good at reading the mood of a room full of people early in life.  I am convinced this contributed to my effectiveness as a therapist.  It also helped with my ability to study neurolinguistic programming (NLP).  A skill I formally studied in the early 80’s and use to this day.

For an abstract thinker spoken language is only about 25% of the communication process and the other 75% is based on a wide variety of cues.  Just a quick simple example, if someone is spinning you an untruth look at the hairs on their arms.  If they are standing up, you’re being spun.  It’s an anatomical reaction.  If the hair is smooth against the skin there is truth.  Anyway I’m explaining empathy, not teaching NLP.

These are concepts that don’t sit well into rigid cognitive beliefs systems, a natural trait of “concrete” thinkers.  I only raise this part because when I left the counselling professions I entered the world of policy analysts surrounding myself by concrete thinkers.  To most policy analyst’s the world is pretty black and white.  It’s difficult to write a “grey” policy.  The very nature of government policies is to eliminate those grey areas.  Transitioning into that kind of groupthink proved to be more difficult than I had initially given it credit for.  It caught up with me later.  I was a better therapist than policy analyst. Continue reading

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Hodge-Podge and Little Things

“Eclectic yet classic with a playful bohemian twist is how I would describe my style” – Alice Temperley   

I will borrow Alice’s quote posted above to kick off this little write up.  It’s five o’clock in the morning and I’ve been awake since 4:30.  It is not uncommon for me to wake up once or twice a night but that is generally to deal with one of those aging things (increased nightly urination bouts) or to reposition from an uncomfortable position.  However I generally get back to sleep quickly.  I am not one to toss and turn for a long time before I get out of bed.  I find it mentally frustrating and that is what was happening tonight.

The sky is still dark and one of the things about living 3500 feet above sea level is longer sun days.  Usually, this time of year morning light comes early.  However we are 6 weeks into the summer solstice and have begun the slow crawl towards the fall equinox so later sun rises can be expected.  I’ve been up almost an hour and the blue is (actually a little grey) just starting to appear in the sky.  May be an overcast day, I haven’t checked the weather yet.

Two potential culprits to be awake this early: 1. my chronophysiology needs adjusting or 2. the tautness of my shoulders are at a level of discomfort that is counterproductive to restful sleep.  Years ago, when I was doing some sleep therapy, I often had to explain chronophysiology to my patients and how it impacted their circadian rhythm.

This changes as we age and often we have to adjust our body clock.  It’s like a personal leap year, adding an extra day to realign time.  Very few people function on the traditional 24 hour clock we are so use to.  Some are on an 18 or 20 hour system, others a 22 hour system but very few people actually have a body clock that matches up to our traditional concept of a 24 hour day.  Every now and then we have to reset that clock which may mean a change in sleeping patterns for a night or two.  Just a scientific tidbit however I don’t want to bore you with science so lets to get to the meat of my early morning tirade. It is now 6AM and the sky is bright enough that I could probably turn off my computer desk lamp if I wanted but I might still stumble on the keyboard so I’ll keep it on.

The second options is my shoulders.  The rotator cuffs in my shoulders are so shredded from years of misuse that I almost have Popeye arms.  I have tendons that are bunched up more around my elbows and forearms than my shoulders.  I notice this more when I have a lot of running around to do and have to transfer my wheelchair in and out of my car repeatedly.  The video below should help you understand what I mean by transferring my wheelchair into my car and the impact on, primarily, my left shoulder.

The parents of a 19 year old wheelchair user had asked me if I could teach their son how to go about learning techniques so he could get his drivers licence (another small thing, try and find a driving program that has hand-controlled cars).  So I had a friend help me make a short YouTube video on one way to load your chair into your car (I don’t use a transfer board).  The more things we learn to do for ourselves the less dependent we are on others.  However the more transfers I make into my car the more my shoulder reacts.  That is the one this morning with shoulders/arms very taunt and feeling like what I imagine an out of tune piano chord would feel like.  Continue reading

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Chapter 1 – Part 2, The Foundation

Let It Come
Lying alone in your solitary bed,
The arrival of death you do not dread,
You’ve lived a different but confusing life,
Accepting pleasure and the occasional strife,
And had such joy with your now dead wife.

You are alone and feeling ready,
Your soul is clean and your mind is steady,
You have behind you so many years,
Death does nothing to raise your fears,
For your passing on there will be tears.

Those who love know it’s time,
Awaiting fate to ring its chime,
So let the Reaper creep down the hall,
You have no fear of him at all,
From life’s sweet breast you now must fall.

Terry Wiens – March 2005

I began this chapter with what I consider to be my introduction to the outside world based on my first personal experience to the Calgary Stampede at age 12.  That age was really my coming out in the world.  Prior to that my existence had mainly been in a protected medical environment focused on physical development with little thought to cognitive development.  All of those developmental milestones we have come to understand following the introduction of Dr. Spock (and for the trekkie fans this is Dr. Spock, not Mr. Spock) theory’s of childhood development were unintentionally nurtured in a garden tended by nurses.

I raise this due to the fact that the blossoming of my limbic system took place in a very control environment, an institution for polio survivors known as the Alberta Children’s Hospital.  My adolescent years, that period in your development where logic and respect for consequences, are based on the recognition of risk factors took place in a protected environment.  I never had to look at risk factors since they were managed by others.  Something as simple as teaching your child not to bolt across the street before looking both ways was, in fact, introducing risk management concepts to the foundations of belief.  These were seeds never planted in a hospital environment.

My adventures as a twelve year old was like taking a newly opened flower from the greenhouse then dumping it in the wilds to let nature have its way.  You went from nurture to nature quickly with a very distorted concept of risk.  Risk, for me, was epitomized by a surgical suite, not a behavioural action.  I had no concept of personal risk formed by childhood memories.  My understanding of risk came much later in life based on action and consequences.

That brings me to the second concept I wanted to discuss today, memories.  Needless to say growing up in a hospital memories take on a very different look.  I recently read a study regarding early memories and what they are calling “childhood amnesia“.  I can relate to that due to the large holes of time I have in my own memory banks.  I also differentiate between childhood “realizations” and memories.  To me a memory is something that is very clear in my mind and generally triggered by some tactile or olfactory reaction.

A memory is an event.  A realization, on the other hand, is the culmination of a variety of memories that contribute to a belief system.

My one memory of pleasure was as a two year old “walking” through a path of snow higher than I was to get to the outhouse (no indoor plumbing then).  I suspect I hold onto that particular memory because it is the one memory of actually walking before I contracted polio.

I have very few memories of the 1953 move to Winnipeg or much of the four years spend  following that move.  I do have a vivid memory of my spinal tap.  I was just a month past my third birthday.  I can even smell the antiseptic nature of the examination room.  They say memories created by tragedy are the ones we retain the most but also the one’s we tend to modify the most.

I recall how dim and dreary the hospital hallway was despite a warm sunny June day outside.  Olive green was a popular hospital colour back then and those are the colours I remember.  I was put on a rigid wooden examination table padded with the usual Naugahyde covering of the day with cotton stuffing by my mother who was then asked to leave the room.  The nurse, after removing my clothing, brought out a rectangular green, crisp sheet to cover me. It was stiff with starch, cool against the skin and hemmed all the way around with a three by three hemmed square in the middle.

The doctor had laid me on my stomach.  I was crying, in part, because I felt like shit and, in part, because my mother had left the room. I laid there, sobbing, feeling the coolness of this sheet being spread over me. A nurse was holding my hand attempting to comfort me while I stared, through misty vision, at a cold sterile tray holding a large syringe, some gauze and a bottle rubbing alcohol although I had no idea what they were. The crisp sheet was placed over me with the open square over the small of my back and I felt a coldness being rubbed over that area. I saw the doctor’s hand reach for the syringe while he told me to be very still. Continue reading

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The Awakening

Alphabet of Despair

Abandoned by friends,
Abandoned by wife,
Abandoned by children,
Abandoned by life.

Betrayed by his feelings,
Betrayed by his drive,
Betrayed by his body,
Betrayed can’t survive.

Captured by torture,
Captured by loss,
Captured by drugs,
Captured by sauce.

Destroyed by his blindness,
Destroyed by his lust,
Destroyed by his ignorance,
Destroyed he is dust.

Ended by sorrow,
Ended by grief,
Ended by loneliness,
Ended life brief.

Terry Wiens – March 2005

CONFESSION – When you have two cups of water in the pot and it’s boiling while you are Googling how to get the buffering agent out of prescription analgesics you start to realize what depression is.   That’s the moment of awareness that successful suicides miss.  I’m not sure if I was lucky, insightful or too stubborn to succumb.  That’s how deeply I was mired in my depression while maintaining the facade that everything was fine.  I was teetering on that balance beam of other people perspectives while trying to live my life based on their expectations of what I should be.

The short-term pain of accepting a truth is much better than the long term pain of believing an illusion

The truth will change your path…or kill you, your choice

I had become so adept at fooling people about my own feelings I was now convincing myself that what I was doing was “normal”.  I couldn’t see the truth let alone accept it.  It took a combination of events and the recognition of a good friend to really shake me out of the illusion I was living.  I was one cocktail of prescriptions away from accepting the illusion.

I have a lifetime of compartmentalizing myself to make things work for whatever situation I was in.  I had never really put the sum of all my parts together into one package.  I have had that idea floating in the distance mist of my beliefs for many years but it was always one of those periphery types of things.  When you tried to look directly at it, it wasn’t there.  A prime example of this was Allan and Terry.

All the years I worked in psychiatry I used my middle name, Allan.  The only place Allan really existed was in my career as a mental health therapist and came into existence in 1976.  At the end of each work day Terry reemerged.  People that knew me in those days could attest to the difference between Allan and Terry.  I had nicely split those two entities and it worked well for me for many years.  This may sound a little esoteric however Allan had always walked on crutches and was never encumbered with access issues.  He was accepted for a whole world of different reasons.  He ceased to exist in 1990 but there were ghosts of his insights buried in the clippings of my belief system. Continue reading

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Memory’s of the Poster Child – Chapter 1

“Knowing yourself is the beginning of all wisdom” – Aristotle

Black and white picture of the television cowboy hero, the Cisco Kid

The Stampede brought a lot of famous television cowboys to the Alberta Children’s Hospital

We were children.  We weren’t crippled, handicapped or disabled kids, we were children.  Simple as that.  Yes we lived in a hospital (or institution), whatever descriptor you want to use, but we were children first.  We spend the year attending school in the hospital, we were all scouts, cubs, guides or brownies.  We did arts and crafts weekly, had the movies brought in and as we became teenager we had Saturday night dances in the solarium.  We did all of this while being children first.

Morning physio or after school physio was like attending before school athletics or after school activities like the school band practice but we were children first.  When summer hit many of us got to go to our familial homes but just as many stayed in the hospital for further surgeries or services particularly if you were a rural kid.  Traveling back and forth for physio or some out-patient (not that there were out-patient programs back then) was next to impossible so you stayed in the hospital.  Cities were not designed for the disabled let alone small town Alberta (or Canada for that matter).

WW2 veterans began the push for inclusivity (of a sorts) as a way for them to reenter society.  A form of the community activism these veterans had fought a war for and the polio kids would eventually reaped the benefits of.  The vast number of polio survivors would just add to the demand.

As school wound down in June plans for the summer would begin.  The week of the Calgary Stampede was the highlight of the summer.  It began on Parade Day.  It was a simpler time, less regulations and more direct involvement.  This was a time when it was quite acceptable to load the kids from the Children’s Hospital onto the back of a flatbed truck (beds and all) then drive us slowly down 17th Avenue, north on 11th Street and eventually parked in front of the Calgary Armoury.  The canvas walled tarps would be removed and we would enjoy the Parade.  It wasn’t until years later that I began to realize the symbolism of almost being a Parade exhibit without actually being in the Parade.

The following week would be filled with visit from Stampede dignitaries.  The royalty of the TV series westerns.  And, in some cases, was actual royalty.  The importance of being visited by Queen Elizabeth (1959) and having my picture taken with her was lost on a 9 year old who had a similar picture taken with the Cisco Kid the year before.  I was more excited over the anticipated visit of the television western star Marshall Bat Masterson.  I didn’t even know who Bing Crosby was when he came around.  My focus was the Roy Roger’s, Gene Audrey, Wild Bill Hickok or the Lone Ranger.  These were the characters we watched on the limited amount of black and white TV time we had.

These were the hero’s of our times.  So it is no wonder when you look back at the influence of TV that you really begin to understand how deeply the concept of the gun culture is buried in the psyche of every baby-boomer.  The Walt Disney classic “Old Yeller” brought tears to millions when the family gun is used to shoot the beloved pet.  But these were our hero’s and in the hospital we waited with baited breath to see which “cowboy” would show up during Stampede. Continue reading

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