For God Sake Wake Up

“I think complacency is what you allow it to be” – Draymond Green

Text box quoting "Pretending you're okay is easier than having to explain to everyone why you're not"  Caption below box states "Sadly a forced reality for too many people"
Sadly a forced reality for too many people

I cannot express the level of my anger right now. It’s Thanksgiving and suppose to be a joyous day spend with loved ones (or those close) celebrating the things we are thankful for. Instead I am sitting here pretending to be busy while the thoughts in my head just radiate frustration.

I make a lot of excuses for a lot of people based on that “Pretending you’re okay” statement but I have had years to polish it. I have five generations of people coming and going through my life and I have learnt (took a while) to just be quiet about my own feelings. When I do express my true feelings I am told I’m emotionally draining and most people don’t want to come by to be drain. I learnt years ago to avoid any topics regarding the multitude of “micro inequities” many marginalized face. However today, due to a particular case, I can’t let this fester, I can’t just be quiet otherwise I am everything I am writing about.

I’ve run out of peppers to slice, run out of items to prepare so I have a few meals backed up in the freezer, run out how much house work I am prepared to do so I can no longer dodge the anger I am feeling. I know I go on a lot about access and city maintenance of sidewalks (or lack there of). I will often allude to policies and regulations that are only enforced as a matter of convenience, when someone pushes it. Outside issues.

I try to work with others in the community to make it a little bit more inclusive for everybody but my access advocacy generally ends at the doorway of my condo unit. I deal with the inside condo frustrations on my own. Little things like not being able to get on my deck, unable to reach the stove vent fan, having to wait for someone to visit so I can get them to adjust my thermostat and the list goes on. They are frustrating but not life threatening.

I don’t talk about the morning anxiety that “first” transfer of the day from my bed to wheelchair causes. I don’t talk about that inkling of fear that is there every morning not knowing if I will land properly in my wheelchair or miss so I can spend however long it takes to get up off the floor and into the chair hoping nothing major has been broken or torn. I don’t talk about the frost bite on my fingers tips developed while wheeling to Safeway on a brisk winter day. Yes I have gloves but they get wet when your pushing a wheelchair and that transfers to your fingers.

I try not to dwell on how many drugs I may have to take that day so I can keep myself moving. Yesterday I spend almost ten hours dozing in my recliner due to fatigue generated from pushing past my limits the day before. I don’t talk about the hours I spend researching why a policy or regulation that was created 30 years ago is no longer enforced. I don’t talk about those things because they are mine, those are the personal issues that drive people away.

When I do talk about it it is generally to the person I feel is responsible for it. Little things like why the fire code requires a list of vulnerable individuals living in a condo. I have spend almost a year explaining to the condo management association that they need that list in the fire room kept in the lockbox that only first responders have access to. I have send the four page code document to management showing them it exists. However, as it shows in the case I am speaking of, it seems to be profit before people. All I get from the condo management company is “we didn’t know that”. Does not paying attention to regulations that were established before most of these management people got out of play school really count as an excuse? Just because you weren’t there when they were developed doesn’t mean they don’t exist. Too many people, these days, have no concept of “due diligence” which many, like myself, pay the price for. Come on people, look past your personal comfort bubble and wake up.

Picture of Martin Luther King with the quote "In the end we will not remember the words of our enemies but the silence of our friends".  captioned with "I can no longer be quiet"
I can no longer be quiet

There are so many “little things” it sometimes seems insurmountable. Society should be an ongoing evolving process. Forgetting or ignoring our past does not guarantee forward movement. I have lived with the results of that type of silence for way to long. Yes I speak out but I speak out from the perspective of “lived experience”, a luxury many new disabled don’t enjoy. If I don’t use my experience to speak out for them I become an enabler and not a solution.

I can fight for curb-cuts, I can argue for a more inclusive community, I can engage policy makers and challenge them when they choose to turn a blind eye. I can speak up when I see situations that are governed by “policy” rather than the needs of the person. I can deal with some of my own emotional turmoil, which tends to be created by a society in denial, by speaking out and reminding them of past developments. I know my history, I know my rights and I am very aware of the tools available to me to defend myself. I know how to suppress my feelings and when to let them fly, many new to this world don’t.

So when I came across the Verna Marzo story in the news today I became livid. I can’t even begin to imagine how much dread she must live with. For her condo association to deny something as simple as an automatic door opener to provide her, not only security, but enhanced peace of mind infuriates me. But then I realize by staying quiet I am part of this problem. People shouldn’t have to go running to the Human Rights Commission every time someone decides they can abuse that person. And that denial by her condo management company is ABUSE. I am livid and really have to question how long people are going to stay silent to this type of abuse.

We have rules and regulations for a reason. That reason shouldn’t be based on “convenience” for some but a barrier to others. I’m tired of platitudes, I’m tired of being seen as an “inspiration”, that’s fine for the poster philosophy but doesn’t pay the bills or make my neighbourhood more inclusive. Yes I am angry. I get angry every time the City allows a developer to build an 80 unit condo complex but ignore accessibility standards. If you ignore the building guidelines for accessible bathrooms you save enough space to add three more suites. Follow the money…

Verna Marzo is early in her experience however she is already learning there is little incentive in todays society to strive for independence. The disabled have become a product where there is a better return on investment for the healthcare industry than there is in the esteem of the person working hard to be part of an inclusive society. So for all of that silence out there, you are complicit. Your complacency is denying others their own self-worth. When you spend all of your emotional and physical energy trying to be part of a community, is it really a community I want to be part of.

I think I better stop writing for now…

Public Safety over Fiscal Responsibility isn’t Really Responsible

Home is where the heart is, home is where believe we are safe” – Terry Wiens (2019)

I love Calgary. Calgary is my home. I’ve left it many times, sometimes for career purposes and a few times just to go on a crazy adventure. However every time I leave I eventually find myself returning. And each time I return I see new cracks and fissure taking place in the fabric of what Calgary was. I am slowly coming to the realization that the Calgary I loved may not exist anymore. The question I keep asking myself is “Can it be turned around?”. Can it continue to grow while maintaining that vibrant sense of community which is what I have always loved about Calgary, that sense of community.

Turning on the lights 1953

I still have childhood memories of family picnics and romping through the wading pool at Riley park. Or the annual employees picnic and BBQ held yearly at Bowness Park. All of the adults gathered around the picnic shelters, men playing games like horseshoe while mothers kept the younger kids entertained (no electronics back then) and the older kids swam or canoed around the lagoon. No fecal issues then.

It was a very different City then and civic pride was strong. The City was more united while being determined to grew and prosper. The urban sprawl began and Calgary has been prospering for the past sixty years. Sure there have been a few up’s and down’s, every City has those periods but Calgary, overall, has done very well for itself. That’s what keeps me coming back.

What does concern me is that every time I return there appears to be a new fracture. I think you have to have been gone every now and then to notice, you see things differently when you are looking through refreshed eyes. A lot of that change occurs, in part, due to regulatory change. To really understand that one has to know the history of regulatory change, like the downloading of jurisdictional responsibilities.

A lot of this began in the late 80’s (a period I refer to as the dawning of the age of regulations ending the “Age of Aquarius“) and into the 90’s. The various levels of government used “fiscal management” as a way to dump the responsibility that goes with regulations. As an example the federal government couldn’t keep up with the cost of rising health care. In an attempt to maintain the “universality” guaranteed in the Charter they adjusted the federal transfer payments system. This meant giving provincial jurisdictions the authority to decide how healthcare could be administered and what would be covered. From that simple adjustment the concept of treatment by postal code was born. Many disabilities were treated differently based on what province you were in.

The ripple effect of this resulted in the provinces, as their own way to avoid costs, to begin downloading to the municipal level. It was only in the mid 90’s that the Ministry of Municipal Affairs got out of the inspection business. The inspections that use to be provided by the province were either transferred to local government or, in some cases, created “inspection authorities”, a form of privatization. What local government didn’t factor in was the cost of that “responsibility” which is why, in part, we are seeing such an erosion to our infrastructure. A number of those programs are now being reversed, an example of that is returning driver licence testing back to government from the private sector.

Now, in any attempt to cut cost, municipal governments are abandoning the responsibility of inspection services. I live in the Beltline and all you have to do is walk around the pathways to see how much deterioration has gone on. Without regular inspection erosion just gets worse. Being wheelchair dependent a well maintain walkway is important to me. All it takes is a small crack to come to an unexpected screeching halt and do an airborne out of a wheelchair if you are not paying attention.

I spend a week in the Rockyview Hospital this past February as a result of one of those wheelchair flying patterns due to a poorly maintained curb-cut. The City’s response (cut and pasted from the e-mail) “We were able to mill the road on the NE corner of 14th Ave and 7th St SW on Tuesday. However, after reviewing the location and the wheel chair ramp it needs more attention than what I was able to provide. I have forwarded this location to our Construction department and they have said they will look at it and will do their best to have the grade redone in the 2019 construction season so that the wheel chair ramp is not so steep.” Even the City’s Central District Manager, Roads Maintenance has no idea how bad the walkways are in the Beltline.

I have over 70 e-mails that I have send to the City describing or supplying pictures/videos of unmaintained sidewalks. We are paying the price for the City’s inability to inspect or maintain road safety in a very high density community. Meanwhile I pay the price with my body but most recently a major setback for my wheelchair.

Lightweight Titanium wheelchair

Now I’m facing a $6000 cost to replace a bend frame due to a pothole the size of a small volcano. This was during Stampede week and I was left on my ass with a bag of groceries strewn around me. Thanks to the kindness of strangers who helped me back into my chair and helped me rearrange my groceries things got resolved. I took the video, send it to the City and, on the trip home, realized my frame was bend. When all four wheels are no longer touching the ground you know something has happened to your chair (and my chair is Titanium so it doesn’t bend easily),

Calgary is subject to some pretty intense rain falls and small lakes are not uncommon around curbs. Had of that been the case here it wouldn’t have mattered if you were in a wheelchair or walking, you would have toppled.

As I have mentioned numerous times, I love Calgary so I can live with this. I contact the City regularly reporting bad walkway situations. I do that believing I am being a responsible citizen and trying to do my part to make Calgary the best City it can be. It would be nice if my elected Ward rep would return one of my notes but that never happens. Doesn’t matter, let’s just get the repairs done.

But this latest has pushed me beyond my limits. It is very personal to me and the City’s lack of regular inspections has the potential to create issues for many of our kids. When the City allows the public splash pool on Olympic Square to get to the point where the health authority makes them shut if down due to dangerous levels of fecal matter, that’s my limit.

As a polio survivor it’s personal to me because the polio virus lives in fecal matter. We are living in a time when people are avoiding vaccines, where international visitors are coming from countries that have NOT totally eliminated polio and the virus can live for a long time in a persons gut. How long do you have to go to get to a point where the coliform count can get that high. Calgary, I love you but you still have a level of responsibility to maintain. If the level of fecal matter can get to 7 times the acceptable level you have failed. There are budget cuts but that doesn’t justify increasing the level of danger that threatens our kids.

Colour me pissed off…

Return to Sender

“A lesson learnt and not shared is destined to become a lesson lost on wasted time” – Terry Wiens (2019)

I stopped writing about six weeks ago thinking my publishing days were over. In part because one just gets tired of writing the same thing over and over by finding different words but also in part that most people just weren’t getting the message. For over forty years I have tackled the issue of “access” from every conceivable angle, ramps to curb cuts, alternative formats to audible signage and then a light went on. Access wasn’t the real issue, access was simply a tool.

The real issue lay in building an inclusive community, access was a way to ensure everyone in a community could be part of that community. The disabled activists of the 70’s and 80’s had spend years defining “accessible” as physical. In todays world accessibility is simply one tool to an “inclusive” community that is welcoming to everybody. You can put all the ramps into a library you want but that doesn’t mean it is accessible to someone with a visual disability. So now we have to undo terminology that took thirty years to establish and for me, I’m tired, that is the battle for the new generation. Time to step back and let the next generation take over.

This kind of re-enforces my reasons for stepping back. In the midst of file purging I came across some of articles from my day as a columnist with the Alderlea Magazine. They served as a physical reminder of how long and hard I had been beating this drum while questioning if it was all worth it. As a polio survivor I have dedicated much of my life fighting for disability rights and community inclusion while identifying it as access. I don’t want to get involved with an old process using new language. Words are important but they keep changing. It is difficult to walk away from what had been a big purpose in my life but at some point we all have to accept certain realities.

Historically, for half of my life, I was considered a “non” citizen. Even the right to vote for anyone with a disability was based on the whim of the voting poll manager up to the mid 70’s. There was no Charter in those days so there were no regulatory protections. I could be refused a job interview based purely on me identifying my use of crutches. I could also be refused rental units based purely on my disability so we have made some major moves forward but the world of disability has changed. So it is time to step back.

With that said I have also returned to Calgary to retire in. Calgary has always been my “comfort city” and has always been where I identify as home. So it is nice to be back home. What I find disheartening since my return is how fracture and divisive Calgary has become. I love this city and it tears me up to see how the city is tearing itself apart. So I may stop pushing access (“inclusion”) ands start speaking out on Calgary issues. I want this city, and believe it can be, to get back to the days where it was a city full of people who were proud of Calgary. Right now I am seeing fractured and polarized citizens that want to keep blaming others for issues rather than being part of the solution to keep Calgary the welcoming city it use to be. For now…

Life Long Memories
As I look back down my path of life,
The up’s and downs, rewards and strife,
What have I learnt? I ask my soul,
Was I helpful or was I drool?
Did I do right by all my friends?
Who will gather when my life ends?
Have I left my son a legacy clean?
Have I left him foes, spiteful and mean?
The questions we ask as we move through the years,
Reflections of memories, love, joy, and tears,
Memories that make us what we are today,
The love we have gathered from all those that stay,
The joys of experience of a lifetime abound,
The tears we have shed for those all around,
We are what we do; we are what we’ve made,
Hold onto your memories, let them not fade.

-Terry Wiens May 2006

When Will We Learn, a Life Lesson

” A people without the knowledge of their past history, origin and culture is like a tree without roots” – Marcus Garvey

I must admit this current measles outbreak has me a little concerned. What has me even more concerned is how quickly people forget the past and from what I have observed history seems to get lost after about one generation. Measles had been considered eradicated in North America in 2000 and here we are in 2019 with the largest epidemic since CDC declared it gone. History didn’t begin in 2000 and I have my own life lessons to recall. As a polio survivor (before the vaccine was even heard of) I was a very young child and I have a few very vivid memories which help me keep perspective these days. I want to share one so no kid ever has to go through this again.

Day 1 – The Spinal Tap

It was just a month following my third birthday.  I had been exhibiting signs of the flu for almost ten days and was getting increasingly sicker.  My mom had taken me to the doctor twice and each time been told if was just the flu. I was that little boy and I was three years old. I have very few memories of ever having walked but that day is one of the few.  I had started walking down the hallway between from my bedroom (a bedroom shared with two siblings) to the kitchen.  I was whimpering and telling my mother that I didn’t feel well when I collapsed.  I couldn’t get back up and I felt like crap. That was the last time I ever remember walking without crutches.

This particular day also holds one of the most vivid memories I have involving the early days of my adventures with polio.  My mom came running out of the kitchen to see what the problem was.  My siblings, both younger, were down for their nap.  At that time in my family I had one 6-year-old brother, a younger sister and an even younger brother.  Mom had three of us at that point less than three years old so it was no easy task to run off with a sick child.  My dad was at work. He was a streetcar driver in Winnipeg so one couldn’t just walk off the job.

I don’t know for sure but I suspect my aunt came over to take care of the other kids while my mother took me to the hospital.  She had called our family doctor and made arrangements to meet him at the hospital thereby eliminating the step of having to go through emergency.  After all there was a major polio epidemic happening in Winnipeg in 1953 so there was no sense in playing around with the idea of flu anymore.  I was only one of over 2300 reported cases in Manitoba in 1953.

Bar chart showing number of polio cases per province from 1927 to 1962

Winnipeg can be a very hot city in the summer and this was July 1 so it just compounded my fever. I remember being carried into the hospital hallway and feeling how cool it was compared to outside.  We wound up in some hallway somewhere.  I can still almost smell the antiseptic in the air. I was feverish but the hospital hallway was cool.  The floor was dark forest green linoleum and the walls were dull beige.  There were no windows so the hallways were rather dull and shadowed.  It was mid-afternoon so the lights hadn’t been turned on yet.  It is that same type of optic effect you experience when you drive from a sunny highway into a short tunnel.  It’s not really dark but it is not as bright as it was.  This was kind of nice because I do remember a headache and light sensitivity so the dullness was appreciated.

A nurse in a starched white uniform took me from my mother and carried me down to an examination room.  The nurse had removed my clothes and laid me on the exam table wearing only my underwear.  The exam table had dark brown Naugahyde upholstery and felt cool to my feverish skin.  There was a small table beside it with a silver metal tray on top of it covered with what appeared to be a towel.  I was sobbing more than crying and the nurse was doing her best to keep me calm.  I didn’t know where my mother had gone.  The nurse had also taken my temperature rectally using the thermometers’ that use to have mercury inside them.

When the doctor entered she mumbled a few things to him that were beyond the comprehension of a 3-year-old.  While he removed the cover from the metal tray next to the examination table the nurse unfolded a very starched and stiff green sheet.  It had a nicely stitched open square right in the middle which she positioned over the small of my back.  It really held little interest for me except it was cool to the skin when she placed it over me.  She had also position me so I was facing the wall on my side with my back to the doctor.  I had no idea what was going on but I did keep asking for my mother.

I had no idea what a spinal tap, medically known as a lumbar puncture, was or even that it was about to happen.  I do remember how cool it felt when the doctor used a gauze strip to wipe a red antiseptic over the lower part of my spine.  I later discovered it was called Mercurochrome and I would see a lot of that red stain in the next fifteen years.  At the time it just felt good because it was cool and I was quite feverish. I wasn’t quite sure why at that moment and I probably didn’t really give it much thought however the nurse leaned over, pushing her body against my upper torso, pinning me to the examination table and just started telling me to relax.  In that instant it felt like someone had driven a railroad spike into the small of my back.  I’m not sure what a railroad spike would really feel like but this pain just took me out of this world and into a realm I would wish on no one.  I screamed!

A picture of a large bore spinal syringe needle
1953 Large bore spinal tap needle

This was 1953.  The idea of flexible needles was still sometime in the future.  These were still the day where nurses carried little files and sharpened their needles.  All I know was that I had just been stabbed in the back with the equivalent of a railroad spike.  It probably didn’t last as long as I though however in my mind it went on forever while the nurse kept me from squirming with her body weight.  They had to drain as much spinal fluid as possible in order to get as much as the virus as they could.

I know my mother still talks about how she could hear me screaming from her seat at the other end of the hall.  She was in tears and there was nothing she could do about it.  I never did make it home that day while the person that had been never left that table.  I now mark July 1 as the birthday of the person I am today.  The person who was born May 31, 1950 ceased to be on that table.  Polio does that.

In closing this segment, no child should have to go through these things when a simple vaccination could help avoid. In 2017 the World Health Organization reported 110,000 deaths of children internationally due to measles. After a 20 year absence in North America how many deaths become acceptable because people have forgotten their history.

As usual if you liked what you read or found this to be a worthwhile life lesson then feel free to hit the donate button on the sidebar. Donations buy more food than dignity does and when it comes to my life lessons dignity is nice but it doesn’t pay the bills. Have a good one and please don’t ever underestimate your history…

The Building Blocks of Youth

“To take children seriously is to value them for who they are right now rather than adults-in-the-making.” ~ Alfie Kohn

We all like to see our kids enjoying themselves.  We all want to protect our kids however there is a big difference between “protecting” and “hiding” them from the realities of the world.  Too many parents have little understanding of the subliminal learning that is continual in that time of our life.  What looks like fun and games forms the foundation of future belief systems.  This is why we cannot underestimate the importance of what we role model to our children while maintaining, at least, a modicum of understanding of what they are being exposed to.  They are our future who will be the accelerants of change.

My childhood, in retrospect, was anything but normal.  To me it was normal (hate that word) but by societal standards it wasn’t.  The foundational pillars of my belief system were developed in an institution.  It was an era when hospitals offered polio kids the best chance to thrive.  The communities of the 50’s and 60’s were not designed for inclusion and access.  There were no programs, policies or regulations that demanded community supports so hospital life was my norm.

Bedrest with leg and back splints with head immobilized to maintain neck strength
Stretching tendons and strengthening neck muscles by maintaining head position (circa 1955)

Hospitals provided polio survivors healthcare, education and an active social life, something not available in the general population of the time.  At four years old I was encased in enough metal bracing to qualify me as a “knight of the realm”.  The technology of the day resulted in that equipment weighing more than I did.

By age sixteen I had spend eights years in a hospital, had over a dozen surgeries, completed ten years of schooling, had been a cub, scout, etc and had a very active peer-based social life.  By sixteen the only equipment I was using was a pair of crutches while having achieved my dream to wear tight blue jeans.  My needs were much simpler back then so the foundations of my belief system were developed based on experiences gained in a hospital.

Growing up in a hospital provides a very different perspective on life.  We were the petrie dishes for advancements in healthcare and technology.  We were excellent test subjects for the modernization of healthcare.  And technology (medical or otherwise), as we now know it today, was the substance of sci-fi books.  TV was a relatively new technology and a limited luxury in the hospital which meant one communal TV with limited access time.  We were experiments and I mean that in a good way.

Our mental stimulus came from books, comics, talk, imagination and each other. With the amount of time you spend in bed (classrooms were often half beds and half wheelchairs) you had a lot of time for reading.  We learnt by talking, questioning and reading.  The last two were very important because, as polio survivors, we had to be adaptable and open to adaptive solutions to potential barriers.  We were learning to be our own advocates without even realizing it.

I understood, early in life, that adaptability and compromise were essential while not even knowing what the words meant.  They were part of my belief foundations minus my self-awareness.  Our access to books was like living in a library, anything we wanted to read was made available to us.  By the time I was ten I was in love with anything focused on philosophy, communication or science fiction.  They often melted and, as Proust would say, “I was seeing with new eyes”.  My perception of the world was very different from that of my siblings.  Growing up as a polio kid at the height of the social change movement of the 50’s and 60’s made for some very impactful life lessons, I just didn’t realize it at the time.Continue reading “The Building Blocks of Youth”

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 “The Road Forward, The Path Behind”

Hodge-Podge and Little Things – Revision

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

A revision, they happen in life all of the time. In some of my reviewing today I came across a number of articles that I could be presenting today and they would be just as valid. This was one of them but with a twist. First of all, for those who have been paying attention, I did sell my car with very little emotional turmoil. Second, and this is to those overpaid skin sacks in our legislature. Things like “natural disasters” or a major “health crisis” can be thrown at us. It is during events like COVID19 that we learn if what we voted for was right. How well do they manage the crisis? Is it a “political tool” to be wielded as a way to strip rights or is it a challenge to strip the rights of “people”? My life is based on planning and reacting. I can cut down on reacting by including as many scenario’s in my planning as possible. The more I plan for the less I have to react to. Some of the things I plan for will probably never happen but at least I have given them some thought. With that said the biggest changes since I initially tossed this out regarding micro inequities two major changes, no more car and a major health pandemic which, I can tell you from a personal perspective, this province had not planned for.

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 “Hodge-Podge and Little Things – Revision”

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 “Chapter 1 – Part 2, The Foundation”

The Winding Road of Life

“Let us never know what old age is.  Let us know the happiness time brings, not count the years” – Ausonius

With the exception of some birds twittering outside it is very quiet however it is only 5:30 in the morning and for some reason I am awake.  It’s grey but refreshed.  It rained sometime in the night and natures water cleansed some of the earth.  We need some rain to help cut back on the threat and presence of the summer forrest fires.  Water can be so cleansing and represents life or renewal.

Many years ago today my mothers waters also ran and I came into this world.  It was the day of my birth.  May 31, Gemini through and through.  I celebrate this as my “arrival day” however in true Gemini style I celebrate my birthday in another four weeks.  Four weeks following my third birthday is when I was diagnosed with polio and the person that was became the person who was to be.

I have no idea who that little person that came into the world may have been if I had not contracted polio but I am well aware of the person I have become.  I am very good at deductive reasoning and all I have to do is compare my personalty to that of my five siblings to recognize the differences.  They are all very concrete, linear thinkers while I am very much an abstract lateral thinker.

Small black and white personal picture of me as a baby with a tiny curl of hair on the top of my head
Baby Terry

I can’t say with a 100% certainty how much of that difference is attributable to nature versus nurture but I grew up in a hospital (nature) while my siblings grew up in a family setting (nurture).  I suspect my development is partly from growing up in an environment (hospital) where there were no real definitive answers to so many issues while in the family setting it was basically yes or no.  So my upbringing by so many standards (except mine) was anything but normal.

I arrived early in the morning so maybe that’s why I am up so early today.  Perhaps on some sub-conscience level the sound of mother earth’s water released during the night triggered some memory of my mother’s water breaking announcing my arrival.  I do know the person I started out as arrived early in the morning many years ago but the person I became was born three years later.  It was almost like having been in a cocoon for three years.  I could ask myself why, with three other siblings at the time, I was the only one to contract polio but that is really irrelevant.  Most of my family became other polio kids in the hospital.

By the time I was 16 I had lost five peers who would never see 16 while all my siblings had to deal with was the death of a family pet.  That goes a long way to the nature versus nurture developmental philosophy.  Somewhere deep down I made a commitment to each friend who never got half way through their teens to squeeze a bit of fun and experience into my life for them.  I believe I did that.  I don’t count my life by years but by the experiences I have enjoyed and there have been not only many but also very diversified.  My life experiences were never simple but always varied.Continue reading “The Winding Road of Life”

Back Home and Back to Basics

History never really says goodbye.  History says “see you later” – Eduardo Galeano

Between dealing with the “normal” aging process of a non-conventional body and watching the erosion of disability rights I have been withdrawing into a numbness.  I feel like I have been fumbling around a dark tunnel for the past three years while searching for a light at the end of the tunnel by feeling along a wall that seemed never ending.  It is a slow process pushing a wheelchair while continually stopping long enough to reach out and touch the wall.  The ability to feel that wall was the only anchor to hope one had in the darkness.

Each time I perceived some light at the end of the tunnel a mist would creep in to blanket out that light.  Often that mist was the creation of the erosion of rights or the neglect to access.  Systems that were established thirty or more years ago to make life easier for a segment of the community, those with disabilities, had slowly evolved into a wall of stress that turned those needing the supports to a product for a system of jobs for administrators.  By keeping those needing the supports the most in the dark these workers were protecting their futures.

I stopped writing, I stopped socializing, I was overcome with darkness and met nothing but further rejection whenever I attempted to speak out.  I had entered the twilight of depression and allowed the mist of solitude to envelope me.  I was questioning my purpose continually.  After over 45 years of fighting for rights I was taking on the mantle of failure.  I was personalizing the failure of the social safety net and creating a vicious circle of entrapment.  I started to realize I had to adapt or succumb.  I am not good at succumbing or quitting so I took a lighter out of my pocket and shone the light forward.

I was beginning to see a light at the end of that tunnel but it required me taking action I had been denying.  It meant giving up on others and focusing on myself.  As a life-long advocate I have always been very good at finding solutions for others while ignoring the personal barriers I may have faced.  I had always overcome my barriers by opening doors for others.  That was my strength and that was the light I needed to see.  I had to return to the beginning and get back to basics for myself.  That meant me leaving the situation I was in rather than trying to make the situation fit me.  There was no option for “fit” so I had to remove myself from the situation, I moved.  Continue reading “Back Home and Back to Basics”