Trauma in the Waiting Room

by Shelley Robinson

Trauma in the Waiting Room

Before I explain my tenuous relationship with the Canadian medical system, it is important to mention that I grew up operating on the premise that I learned early in life, both personally and professionally.  “Good things come to those was who wait.”  There seemed to be some honour in this notion that “patience was a virtue” and I was taught that if I operated with integrity, people would respond in kind usually sooner than later.  For the most part, in the 1980’s, good things did come to me as a hard-working and relatively patient school teacher.  I was mentored by veteran educators who were consummate communicators in what I would describe as an environment of professional certainty.  We were trained to follow up with our colleagues, students and teachers in timely and respectful ways, even when it meant staying up late or working on the weekends to do so.  I continued my education through to completing a doctorate in order to be confident enough to form credible research-based questions about educational leadership and systems theories. 

It was through these professional and academic lenses that I continued to address the ongoing confusion that I had experienced since childhood through to my current medical challenges in the medical system.  Having been diagnosed later in life with Adult Cystic Fibrosis (affecting my breathing, body inflammation, digestion and mobility), I learned that the Canadian health care system never operated for me like a well-run institution.  Instead, it seemed challenged to help people like myself in complicated circumstances, in the communities who needed it most, with people who could least advocate for themselves.  My frustrating experiences in many labs, clinics, and hospitals may not be generalizable of all Canadian medical demographics; however, given the current medical staffing shortages making the front pages of many newspapers, I surmise that my narrative is similar to the stories of other Canadians.

Sometimes, like frogs in the boiling pot, we do not see the deficits in the health care system right in front of us until we are too far along to manage them.  We have become used to being triaged and then streamed into line-ups that we are taught to accept as “normal” because there are few alternatives to doing so.  For example, I have been told many times how fortunate I am to live in a country with a free health care system that I see now as one large waiting room.  Unfortunately, our system does not adequately address the pain and suffering that this waiting causes people who are lining up for potentially life-changing tests, appointments, treatments, surgeries, and follow-up.  I have travelled to many countries and have experienced first-hand the efficiently run international clinics and hospitals (too many to list, but Finland stands out).  By comparison, I always come back to this notion that our Canadian health care system claims to be a successful one on the backs of those people who are willing to wait within it.  

Some of the bottle-necking of our medical testing and services is due to the influence of our public and private insurance companies dictating what they cover, and in turn, what we can access and afford.  Unlike what the world that sees us as an example of as a free health care system, we actually pay for it.  Regardless of how it is being funded, one or both of the following situations is preventing this medical system from serving us optimally:  1) We do not pay enough to keep these federally and provincially funded, and provincially managed systems, strong, viable and competitive; or 2) they are not being run well enough to triage and treat people efficiently and effectively with the existing funding. 

How do I make such brash conjectures about the system that has saved my life on a couple of occasions, largely because I made sure that they didn’t leave me behind?  I have been an advocate for myself and my aging parents for much of my life.  I have blown a few whistles, and stood up on some soap boxes.  However, now I am actually quite triggered as I sit down to write about it in some detail.  It is painful to recollect the dozens and dozens of times that I have been dismissed, overlooked, and under-prioritized when I have been worried, in pain, and, in some cases, debilitated by my medical matters.  I have been told countless times to wait several months to more than a year for tests and imaging (that I begged for); appointments with specialists (that I lobbied to see); and surgeries (that were difficult to get).  I was told that if my symptoms became unmanageable in the meantime, that I was to go to an emergency walk-in clinic or hospital where I was told yet again that I had to wait to see a specialist.  

Some tests and surgeries did eventually come through for me and I remember hearing some surprised reactions by my doctors: “Oh my, you do have a rotator cuff injury and a split bicep” (based on a long awaited MRI); or “Oh, your lungs have filled up and you have pulmonary effusions” (due to a CT scan of my lungs that my husband argued to get in an emergency ward).  “It is a good thing that we took out your tonsils as they were filled with puss” (after debating with doctors to remove them for five years because they did not believe in tonsillectomies).  Some doctors were offended when I asked too many questions, or made any kind of recommendations on my own behalf.  As well, when some of my ideas did turn out to be correct, there were never any admissions on their part that they should have spent more time listening to and following up with me.  Most poignantly, I remember debating a doctor while being in an intensive care unit that I wanted a sputum culture of my phlegm.  He said “those tests do not show enough to warrant it.”  However, because of a vague recollection of my childhood where my sputum had produced some unusual results, I insisted.  He agreed, and the results highlighted some colonized bacteria in my lungs which finally led me to the Vancouver Adult Cystic Fibrosis Clinic.  

It was this such series of waits amidst numerous hospital visits throughout my lifetime that left me without a formal diagnosis about my Adult Cystic Fibrosis until I was fifty years of age.  Granted, the CF world has been evolving, but no one at any point in my young childhood, even when I was sitting in oxygen tents in different hospital rooms after being intubated to breathe, thought to do a sweat chloride test on me.  My skin had always tasted salty to me, but no one ever bothered to ask me or my parents this pretty obvious question even when CF was a pretty identifiable phenomenon at that point in time in the 60’s and 70’s.  Instead,  I attended hundreds of ten-minute appointments (because the system only affords short appointments) with both doctors and specialists who never quite connected the dots.  The medical mantra was always resoundingly the same:  “I can only discuss one medical issue per appointment.” They frugally doled out requisitions, referrals and prescriptions and held me in many wait-and-seeholding patterns. 

I now feel tremendous disappointment and some degree of trauma writing about my medical history in retrospect.  However, nothing prepared me for how acutely broken that I would find the medical world of my elderly parents.  My father recently had a stroke and was hospitalized.  His situation was a difficult one given multiple issues, and over his several weeks with a rotating series of nurses and doctors, I had to repeat myself so many times that I eventually wrote a family report of my own that I asked to be put at the front of his file so that it would be read by everyone overseeing his file. Despite my family’s efforts for his continuity of care, he kept getting medicine that he was allergic to, food that he could not eat, and they were not up-to-date on his care requirements.  I became the verbal Cole’s Notes version of his care for everyone who met with us, and even still, the degree of mistakes that occurred on a daily basis dramatically affected his recovery.  I do see it as a result of the burden on the health care system at a time when it is still recovering from the global pandemic.  However, I also see it as a lack of training and discipline of the medical staff to keep up with and develop strong communication systems that work for themselves and their patients.

I eventually filed a complaint with the hospital administration only to find that when he was sent to his next rehabilitation centre, his file had not been communicated in such a way that the new neurological unit could read and respond to it.  As a result, for a fourth time, he was given medication that made him ill.  I was told by the hospital administrator that “the new technological management system was still confusing to people on both ends from hospital to rehabilitation centre”.  I corrected him and said that it was the medical team’s training and due-diligence of communication that was in question, and not the technological tool that they had chosen to use in order to do so.  After this debacle of care in two hospital facilities, my father waited patiently to be put into a long term senior’s centre given his cognitive assessment, and, unbeknownst to any of us, he was put into a “dementia ward” in a bed that was far too short.  We were told that he was to wait until a room with the right fitting bed on the right long term care floor shows up even though he has spent his entire life of eighty-four years paying into this medical system.  In the meantime, we are still waiting.  I worry about his emotional well-being, and his medical needs being met without us advocating for him on a daily basis because I live out of province.  

I was told once by one of my educational mentors who used to be the principal of one of the schools where I taught that “Trust = Action/Time”.  In essence, I believe that we must say what we mean and do what we say regardless of our vocation because it builds trust within whatever system we operate.  What I was trained to understand in my own profession is what I have learned to see across professions.  When we wait too long to give feedback to our students, we lose the opportunity to teach them well because windows of learning close if we do not seize them when they are open.  The same thing applies in the medical profession.  When we make our patients wait too long to be diagnosed and treated, with adequate follow-up, we lose the opportunity to create a culture of wellness that extends across families and communities in such a way that our entire country benefits.  There is a danger in making people wait too long for the very things that makes them healthy because their primary medical issues quickly turn into secondary problems that keeps us awake at night writing an article about it to people who will read them.  The trauma of waiting in a system that often defers adequate medical care because the system is not functioning well, is the real Canadian medical crisis and it warrants our attention now, not later.

Mother of the Groom

by Shelley Robinson

As I walked my son down the garden path of his wedding along the Calgary Bow River, I remember feeling amazed that he had gone from being an adorable blond and blue-eyed boy to being a handsome tuxedoed man about to make a commitment to his beautiful bride for the rest of his lifetime.  When he was a child, I knew that the deck was stacked in his favour being a white male in a culture that continues to be influenced by the British monarchy.  He would likely have more opportunities than I did as a woman in Canada.  Therefore, raising him as a single mother to be thoughtful of the subtle, and at times, overt discrimination that separates Canadians because of their age, race, gender and other orientations, was a focus of my parenting.  As his mother and as a woman, I felt tasked with the important responsibility of mentoring him to have the same level of respect that he brings to the world at large and all of its diversity, as he offers a significant relationship with one woman.  

When he was little, and would brag about his height, I would say the little mantra that I repeated throughout his childhood, “It is not how smart or strong you are, but how kind you are that is important.”  I felt a tingle of nostalgia remembering him asking me who he might marry someday.  From that point forward, I raised him with another person in mind.  I wanted him to be ready for, and have the insight to choose a compatible life partner (whomever that might be) who would be considerate of his needs, and who he would treat well in return.  With his early intention to marry a woman, came a profound maternal calling to me to help him understand women well enough for it to turn into thoughtful actions in his relationships with them. 

As I watched him get teary catching the first glimpse of his new wife-to-be, I asked myself, “Did I help raise him to be a good man?”  The thing about parenting is that we all do our best with the knowledge and abilities that we have at the time with our children.  However, in the end, our children’s lives are truly their own.  Beyond my parenting, my son has been influenced by the world around him educationally, culturally, politically, legally, religiously, and otherwise.  Fortunately, he and I live in a free country where he has been able to view many different types of people who have been afforded equal rights (for the most part) and share the same opportunities as white, heterosexual men who used to have a monopoly on much of it.  As well, how I have acted and been treated, both positively and negatively, in my lifetime as a woman has also likely influenced his perceptions about how to understand and treat women respectfully.

When I was a new bride walking towards my first husband-to-be with all of my naïveté at the time, I really had no idea about the trials and tribulations of marriage that would eventually stretch the fabric of mine to the breaking point.  My family never really discussed marriage as a topic that I like to refer to as “the great relationship crapshoot”.  What I did learn was that how people are influenced by their families of origin, schools, communities, and workplaces, impacts how they behave together as a couple.  What I was taught by my parents, and especially by my strong-minded mother, was to believe that I was an equal in marriage, the work-place, and in society at large, but it was a value-system that met with resistance throughout many contexts in my lifetime.  I remember being turned down for positions because I was a single mother.  However, through hard work and determination, I forged a strong career path.  I remarried later in life to someone who sought out and appreciated my strengths. 

Travelling has been an eye-opening experience for both my son and I.  On one trip, we browsed through the magazine rack in the airport departure gates.  He pointed out that most of the front-page covers had women dressed provocatively; men wearing hunting or sporting gear; and most of the people were young and white.  We discussed how people of different ages, races and genders are portrayed in the North American media, reflecting their social agency in the world.  Sometimes, when arriving home from various countries (which are too many countries to mention and best to avoid identifying), I still marvel at the stark contrast between how I am treated by people abroad, where misogyny is still alive and well, versus how I am treated at home.  It is sometimes a relief returning through the Canadian airport arrival gates to find men and women looking at me in the eye and listening to what I have to say.  In some other countries, I have often been ignored, objectified and sometimes confronted for being a woman. 

We often take it for granted in Canada that women are now able to drive; vote; be independent without chaperones; be leaders in the workplace, and have a voice on the political stage.  Fortunately, in my son’s experiences within Canada, he has grown up to see many people working together in strong, equitable relationships regardless of their differences.  However, he has also come up against examples of discrimination which he has had to mitigate carefully.  In my education, “Liberal Feminism” loosely means giving voice and efficacy to all marginalized people, regardless of gender.  In my lived experience, “Feminism” is often misunderstood to be a bunch of overbearing women wanting rights at all costs even if they exceed those of others.  Therefore, in the face of these interpretations, it has been important for me to address this topic with my son.  

Fortunately, he has chosen a strong and compassionate woman to marry.  She reminds me of the of the vital women in the early 1900’s Canadian suffrage campaign for temperance and improvements in health and education.  They led the way for women having the right to vote first in Manitoba, Saskatchewan and Alberta in 1916, and as late as 1960 for both men and women of indigenous backgrounds to be able to vote across Canada.  Women were first recognized in parliament in 1921.  As a result, my millennial son will need to be her champion by developing strong skills to communicate, collaborate, negotiate, compromise and sometimes concede on matters as they arise in their marriage.  He will also need to be strong enough to ask for what he needs from her.

I am now the mother of the groom, one of his family matriarchs with a consultative role in their lives to provide occasional advice and support (solicited or unsolicited).  However, as my husband has explained to me, it is unlikely that my son at any point in the foreseeable future will ask me how to be a good husband, just like my husband never asked this type of relationship advice of his mother.  In our generation, how to have an adult, marital relationship seemed to be a bit of a secretive thing.  My friends and I discussed it together because our parents did not always teach us about it using any kind of reliable tried and true marriage curriculum.  They led by example, however effective or ineffective this may have been.  Therefore, if my son does eventually ask, I would share the following three pieces of marriage advice:  

First, everything that he and his partner will experience will be two experiences.  One will be how he perceives it through the lens of his upbringing; and the other will be hers with all of what it means to be a woman in today’s society.  Both contexts will need to be navigated thoughtfully.  He will need to listen to her without assumptions because everything that she says and does will be a new experience to her everyday of their marriage.  Just as he will grow and have greater awareness of his life circumstances, so will she.  They will both need to set aside time to check in regularly about what they are thinking and feeling so that they can better align their long-term trajectories.  In the absence of sharing one brain with a partner, there is only one way to really be in sync.  It is to communicate regularly in varied and meaningful ways. 

Secondly, nothing in the marriage should be taken at face value.  Everything has a context.  Once this is fleshed out, the content in any discussion is usually of less consequence.  In other words, when we are tired, hungry, worried, hormonal, sick, inebriated, or just out of touch with a topic, we do not have the same capacity for understanding people as we do when we are truly healthy and present with each other.  The key, then, is to dig deeply into the who, what, where, when, and how (our context) of the marriage each and every day.  We must offer our best selves to each other by working on our mental, physical, emotional, spiritual and social selves by seeking mentorship and serving others.  By doing so, we will likely develop better contexts to foster the relationship.  In essence, we cannot match the strengths of our partners if we do not keep working rigorously on ourselves and our relationship contexts. 

Finally, all of the above advice becomes more difficult when there are distractions such as children, jobs, and other life circumstances.  It is critical that his spouse’s needs are at the top of his list of priorities.  Many of my friends and family have divorced because they did not put each other first in their marriages.  Men in Canada have historically relied on their spouses to take care of the domestic duties of managing the home and the family as we used to be a predominantly single-income family culture.  However, my son’s marriage, along with other new marriages of his generation, will likely be very different from those before him.  Now we live in an age where the marital labour is best shared by both spouses in ways that suit each of them.  This sharing requires that each partner needs to be at the top of each other’s emotional food chain as much as possible to make time to collaborate on these roles.

When their wedding drew to a close, my new daughter-in-law read her wedding vows that were long and comprehensive of her love.  His were concise and meaningful.  They declared to their little congregation that they would live together as man and wife “until death do they part”.  Their union became recognized by God and the country as legally binding.  

As the Mother of the Groom, I felt at peace with the knowledge that I had done what I could as his parent to help equip him for this important relationship with a woman so that he knows how to do what it takes to be the best husband possible to her, their children-to-come, and then their children’s children.  He will pass on a legacy of respect to them based on how he treats his wife and his family; and how, as a couple, they teach their children about how to have a respectful marriage and family.  We all cheered as they were announced as man and wife.  I made a silent prayer that I tossed out to them with the confetti as they strode past us with the optimism typical of people embarking on new beginnings:  “Be kind to each other, but most of all, make the time to be good for each other.”