Jennifer Andrea Romero
Jennifer Andrea Romero is a high school English teacher, wife and mother. She completed her MA-IS program with a focus on cultural studies in the summer of 2015. When she isn't baking sourdough bread, Jennifer enjoys books, movies and spending time with her family in their Toronto home.
Humans are unique in their ability to recognize the finite nature of their existence, and yet, they often respond to life-changing or life-threatening crises with denial. This instinct, while potentially useful in the moment, can impact both individual and social well-being in the long run. The author takes a narrative approach to write and reflect on her response to her father’s terminal illness and death within the context of two global pandemics. Through an interdisciplinary lens, she examines her own response to her father’s cancer and uses it to inform her response to the COVID-19 pandemic. The author calls for individuals to be reflective as they face the current global pandemic and draws attention to greater systemic issues of inequity that have come to the forefront amidst the global crisis.
KEYWORDS: Global Change, Grief, Narrative Therapy, Cultural Dis-ease, Second Chances
When my dad was diagnosed with terminal cancer in 2000, life suddenly came to a grinding halt. My father’s one-year life expectancy sickened my relationship with time. A finish line had been drawn and it was racing toward my father. At 15 years old, all I wanted was for my suddenly upended world to be put back into place.
Despite the prognosis and grief, bills needed to be paid, school needed to be attended, and appearances needed to be maintained. My family's routine remained mostly unchanged, but with each morning good-bye, family dinner, and outing to the mall, a question gripped my mind: would this be the last time? Mundane tasks that were once a source of boredom were endowed with deep existential sorrow. The futility of housework was nauseating, regardless of how deep or thorough the cleaning, the dirt always came back. During mealtimes, Orwell’s words echoed in my mind and I felt like nothing more “than a bag for putting food into”. School, by contrast, was an escape that provided time to pretend that all was well, time not to think about cancer. This feeling of escape was followed by an emotional reckoning, an unbearable guilt in recognizing that I was trying to flee my dad's illness and, in doing so, was running from him. Despite this complexity, life continued, much like it had before, but the spending of days came with the addition of constant trepidation and sorrow.
Although life continued, and in many ways in an ordinary manner, there were moments that drove home the gravity of this new reality and showed me that, beyond a doubt, things would never be the same. Surgeries, chemotherapy and radiation ravaged my father’s body. It became hard to discern what was doing greater harm, the cancer that would not relent or the invasive and excruciating treatments that were only ever intended to “buy some time”. It was this "time", the thing that had suddenly become most precious, that crushed my father spiritually. He experienced many sleepless nights as he waited for test results and follow-ups, and he recognized that nothing more could be done to prevent his demise. I often heard my dad cry out to God when he thought we were asleep. My father’s condition and his existence were excruciating to witness and impossible for me to process or even acknowledge. My dad’s rapid physical and spiritual deterioration were clear signs that the end was near. They were signs that I wanted nothing to do with.
Yet, in all of that chaos and rapid passing of time, there were moments of normalcy too. Listening to my parents plan for their retirement of a house up north and an antique shop reassured me that such a future could and would exist. Birthdays came and went and fooled me into thinking that each passing year was proof of a guaranteed future. When my parents went away on overnight trips, I told myself that a sick man would not be up for that type of travel. When my father gained weight, thanks to my mother’s care, I was certain that he would make it. This conviction was solidified by moments of hope, the removal of an inoperable tumor, and for a fleeting moment, news of remission.
It was in these times that I believed things could go on like this forever. This belief informed my decisions and I continued to live my life as I did before my father was diagnosed with cancer, as if nothing had changed. I excelled in school, worked part-time and even paid for a school trip to Greece. My unchanged path only assisted in a growing denial of reality. My life looked and felt much like it had before the cancer had hijacked it, and that one-year finish line stretched into a three-and-a-half-year marathon. With each passing day, I settled into my new reality, shaken but resolved in my belief that we would get through it.
My conviction in my belief that my father would live was so strong, that even the Severe Acute Respiratory Syndrome (SARS) outbreak in 2003 did not startle me. I did not take extra care in washing my hands, I did not avoid going out, and I continued to work as a medical receptionist. All of these decisions helped to reinforce my illusions, but put my immunocompromised and critically ill father at great risk. I’m sure he saw this, how reckless I was, how I showed no regard for his safety, and yet I don’t think I saw it. I don’t think I saw anything in the last years of my father’s life—I was too fixated on life being the way it always was.
On June 21, 2004, my father could no longer evade that finish line—it crossed him and our family of four was crushed by the cataclysm of loss.
The morning after my dad died was surreal. I could see the world still moving while I remained suspended in time. I saw people going through their day to day, being upset by the most menial things like chipping a nail or spilling their coffee and it sickened me. But there was a deeper, darker feeling that was emerging, something that I had worked so hard to suppress but could no longer hold back. I had squandered my time. I had three-and-a-half more years of life with my father and I did nothing with them. If my father had been fighting to evade the finish line, I had been running towards it, desperate to make my reality something I recognized, desperate to return to a world without cancer. What I should have done was slow down, take every second I could and be with my dad. I should have reflected on what mattered most, I should have taken time to be quiet, to confront my terrible fear of losing my father, but I didn’t. Instead of emerging from his loss heartbroken, but more at peace, knowing that I had shown my father dedication in his final days, I was confronted with my failure to take the time to be with him and hold his hand when things were at their worst. The end of my father’s life marked the beginning of my knowledge that my actions could not be undone, and I was left to live with my choices.
On March 16, 2020, in the wake of a global pandemic, Prime Minister Justin Trudeau told all Canadians to go home and stay home. As events unfolded, that familiar feeling came flooding back: my life and reality were changing, and once more I had no way to restore them. I saw this happening to those around me too. People were scared, but I noticed something else as well: just as I had attempted nearly 20 years before, during my father’s cancer, so many were trying to bury their heads in work or chores. People were plowing forward as if nothing had changed. I heard conversations about “when life gets back to normal” or “in another week we should be back in the office” and I experienced a very visceral response. I saw in others a version of myself, who above all, desired normalcy at any cost. I couldn’t bear to see others plundering their time, assuming there are better days to come.
I know how it ends, the burden and guilt of living life with the illusion that all is well, and I want nothing to do with denial. This time, I am managing my responsibilities at work and at home, but I am not burying myself in those things. I am taking every second to play with my daughter and be with my family in the ways I can. I have made a world of small and beautiful moments. A world of balcony visits with grandmas and sharing of our abundance of foods and supplies. A world of cardboard pirate ships and homemade storybooks. A world of watching a caterpillar crawl while my daughter laughs with delight. A world of sitting with my husband on our balcony and of watching the sunrise in perfect silence. I am taking in every moment, not because I don’t understand the severity of the events that are unfolding, but because I do understand them. This pandemic drives home the reality of the finite nature of human existence. It reminds me that the future is an abstraction and that the present is all that is.
In a world where many things are uncertain, I am allowing unthinkable thoughts to cross my mind. I am accepting that my family’s good fortune could turn, that we could lose our livelihood, our health or something worse. I allow myself to think that we may not all come through this safely. In imagining these possibilities, I become ever more aware of how much each person in my life means to me. Knowing this, I focus on preparing for what I can, helping those I can and drinking in every second of the present. This time, I am taking the time to be sure I do not lose each precious moment being fixated on a future that may never come. This time I am dedicated to what matters most.
I cannot reclaim the missed opportunities to be there for my father. That choice has been made and I live with it now. What I can do is recognize the ways each of us manifests a desire for predictability and normalcy and how this clouds our judgments and pushes us to cling to stasis regardless of the consequences. It is futile to long for the world as it was before December 2019, and it is just as senseless to count the days until 2020 comes to an end. We have choice and control over how we spend our time; more importantly, we have the chance to decide who we want to be as individuals and as a society when this pandemic becomes a quiet grief from our past.
COVID-19 has brought the world to its knees and has shown us the weaknesses in our economies, healthcare systems, and social programs. This disease has held a mirror to us and our shortcomings are tough to look at. We see reflected a society that values the economy over human life. We are willing to push to reopen and restart despite the risk of a larger second wave of COVID-19. In a time of such great vulnerability, and in place of a sense of shared humanity, unthinkable abuses of power persist and it is all the more horrific to witness. So too, we have witnessed a disproportionate number of racialized, low income and elderly people become infected with COVID-19; although this is tragic, it is unsurprising. We knew our healthcare systems were underfunded and, as a result, our most vulnerable have been unfairly exposed. COVID-19 has only made visible what has always been below the surface.
We are at a turning point where we have the opportunity to overhaul our systems, to ask ourselves if the lives we are living really make sense. This is our chance to redefine ourselves and to redefine humanity. Yet as I see a slow reopening of the old world—a return to politicians politicking, a revival of the slouching economic beast that is still being lauded as our saviour and its enormous carbon footprint—I am saddened. I see citizens crowding parks and stores, refusing to maintain physical and social distancing recommendations, and refusing to wear masks in public. I see people desperate to cling to the reality of a world now gone. I fear that for many, their decision to ignore public health officials is informed by a belief that individual freedoms matter more than the health and lives of others. Our society is desperate for a return to the status quo, regardless of the toll social injustice, climate change and the neglect of the most vulnerable have already taken.
I fear that, much as I had almost 20 years ago, people are scared to confront the difficult truths that have emerged from this pandemic. We are refusing to reflect, to learn and to change. We are refusing to respond to this pandemic beyond “flattening the curve” and are missing our opportunity to address our many social diseases. I fear our window to redefine and emerge from this broken but better is being squandered. The window is still open and we can still reflect on our choices and what they mean to us. There is power in understanding and being present. Even the darkest of thoughts can offer the power of clarity and can become the catalyst for change. We can choose to face this and choose to emerge from this pandemic with a knowledge that we have shown our humanity in grieving the lives we have lost, and in doing so, create a better future for everyone.
1George Orwell, The Road to Wigan Pier (Toronto: Harper Perennial Classica), 69.