The Future is Bright

The future is bright! This is what I have told myself over the last year every time I have dragged myself out of the pit of darkness, enough to reach up and brush my fingers against the warmth of hope. I have had to frequently remind myself that hope still exists because I couldn’t tolerate the idea that things would stay the same, or more devastating, get worse. Tell myself that things aren’t as bad as they feel, because the reality is that on paper, things look great – from the outside, better than ever! How could you complain? some may ask, and that is a valid question because professionally, the last year has been the most productive, successful and fulfilling year of my life, and for that, I am grateful and proud. But throughout the last three years, I have been severely immunocompromised due to cancer treatment, and my experience as such has caused a tremendous amount of pain in my heart. It has been growing since nearly the beginning of the global pandemic that so many are trying desperately to forget, and for myself and everyone like me, I am compelled to share why that is. Buckle up.

This article is sure to get your blood boiling, regardless of your position regarding the last three years and your current behaviours. But the reality is, we are divided and absolutely no good can come of division. So, I ask of you, with humility, to please read on, straight to the end because I believe there is more riding on our individual and collective decisions than currently meets the eye and I know I speak on behalf of us all when I say we all want the same thing; love, prosperity, safety and freedom…to name a few! We need to heal from the last three years and ignoring what happened, and what is still happening to over a million Canadians, will not lead us to the things we seek.

When I look back at the evolution of this website and all its articles, the stories paint a picture of hope, triumph and growth but in May 2020, after promising myself I would not, I wrote my first article about Covid-19. It was only eight weeks after the province of Ontario, Canada – not long after the World Health Organization declared the pandemic – shut down schools and told parents, “Just two more weeks and the kids can go back.” When I look at the evolution of my articles since then, I can’t help but question whether I’m still on track – whether what I am delivering is still hope. And a quiet whisper in the recesses of my mind tells me, “No, Michelle. You’ve lost your way.”

There is a tired part of my soul that concedes and responds with despair. That wants to let go of the thread I still hold that believes we as a society can come through this horrifically dark time in history together – in solidarity and with kindness and compassion. It is what remains of a longing for what was about to be. You see, I can not say ‘what was’ because prior to Covid-19 what existed for me was cancer treatment. It felt like unending physical agony, in spite of the mental clarity and personal growth I was creating for myself at the same time. And before cancer, was worse. Though my body did not experience such physical pain often, my mind was fractured then – stress, anxiety and insecurity ruled my conscious and unconscious mind. So, it was not what I longed for. Instead, what I desperately wanted – felt like I deserved – was what could have been.

In the early years of my adult life, I would not say hope was something I experienced often. I had not come into this world in a situation that cleared a path for me. In fact, once I was old enough to be on my own, it was clear that I would always have to blaze my own trail. I wanted more than what those before me had achieved and with very few resources, my focus remained on furiously defying odds – busting glass ceilings. But it always came from a place of desperation, seeking security, and validation. I was often running away from what was, rather than towards hope. But when I got sick with Acute Promyelocytic Leukemia, and the universe showed me what we truly have to fear, my perspective shifted. I began setting goals because along with the threat of death came the gift of self-belief. The future was bright and I had big plans. I had found hope.

In the early days of the pandemic, I held on to that hope tightly. What I saw before me was a massive opportunity. You see, the parallels of dealing with a cancer diagnosis were not so different than what the rest of the world was experiencing when the pandemic was declared. We were ripped away from the comfort and security of predictability – the illusion of consistency, safety, and longevity. For the greater good of humanity, we had to avoid the people we loved to protect ourselves and them too. It reminded me of the wake-up call I received, that shifted my mentality from constantly striving to maintain control to accepting that we truly have none. Of ourselves, sure, but of anything in the periphery, surely not. While the early days of the pandemic were chaotic and scary and everyone was trying to wait out the next wave, I saw what the world could learn from it. If you’re interested in reading about the similarities and opportunities, click here Reconstructing the World Post-Covid19.

In the days of smashing pots and pans together on our front porches, and posting large signs on our lawns to thank healthcare heroes, I felt a solidarity I never felt while in cancer treatment. I always felt on my own then, but when the world began feeling what I had felt, I felt unity. I was proud of my community and Canadians. I saw kindness and compassion and helpfulness. The societal lines that defined who was essential and who was not shifted. No longer were superstars, sports players or CEOs of multi-billion dollar corporations revered. It was grocery store clerks and nurses who kept us fed and healthy. We said, “Those people are the true heroes!”, “Give them a raise!”, “They need to be protected at all costs!”, and it was the truest thing I had ever heard.

Our government encouraged us to all stay home. The public health officials and international health agencies told us it was the safest thing to do…but to make sure we got outside for exercise – but also stay six feet away from anyone outside our homes. Groceries stores and mom-and-pop shops started curbside pick-up to keep their communities fed and their shops afloat. We mourned together for the people and businesses that didn’t make it.

As the realization that this wasn’t going away descended upon us, and people became comfortable with the autonomy and balance remote work offered them, we heard the message from officials change, even though public health doctors continued to urge people and the government to maintain precautions. The government told us, it’s safe to go out, it’s safe to go back to work, it’s safe to get the kids back in school, as long as everyone masks! This was the point at which I began losing faith. No longer were people cheering for the nurses. Instead, they gathered outside hospitals blocking the way of the most vulnerable and valuable – patients and healthcare professionals – maskless, and screaming at them for trying to control their lives. We saw our family members, friends and neighbors raise flags with offensive profanity in the rebellion against their great oppressors. And then we saw them move to vaccination clinics, shaming parents for injecting their children with ‘poison’ and for raising ‘sheep’. I could not understand how we as a collective society had only months ago been banging pots for healthcare heroes and then turned on them by threatening them at their place of work. The places in which healthcare heroes were fighting to save the lives of the people actively dying of the virus protestors labelled a conspiracy. I couldn’t decide what was worse – calling it a conspiracy or that they were willing to acknowledge it was happening but then invalidate the deaths of so many by comparing it against how many people ‘would die of the flu anyway.’

My heart hurt and my hope dimmed. Knowing that I was in one of the high-risk groups for severe illness or death (later learned the fifth highest-risk group), I began to acknowledge that each of those people protesting at the hospitals, at Queen’s Park in Toronto, or at the Parliament in Ottawa – where they used children as blockades – not only did these people exist among us, every single one of them was willing to let me, and people like me, die to defend their opinions – and I even had family members and friends among them. I felt a new internal struggle brew inside me, ‘othering’. I did not want to let go of the belief that we could come together but I also could not relate and certainly didn’t feel safe with the ‘others’. And so I battled between wanting to attack them in return (to protect myself) and remaining open and compassionate to what I recognized in them, fear, conviction or maybe a bit of both. The real irony was that they were screaming at the government and media for inciting fear but what sparked them into action, the only logical conclusion, was fear too. Fear of oppression, fear of loss of freedom, fear of change. And because my lessons learned from my own terrible experience told me that I needed to be more compassionate for myself, I knew I needed to be compassionate towards them too – but it was easier said than done.

In October 2020, I thought that my ability to tolerate the intolerable had been pushed as far as I could withstand it when the media began throwing around the idea of herd immunity. It inevitably meant that people just like me would be stripped of our humanity and deemed ‘acceptable losses’. As an outgoing ambivert, it may have been the moment I defied my nature by recessing into myself and I cancelled my cable TV. No longer could I watch the degradation of society. I was on my own, isolated in my house and in myself. I felt like I was fighting cancer all over again but this time, the safer space was inside me. I laid in bed and cried, sat on my couch and cried, and wrote here in this very blog and cried as the knowledge that my worth to society, that the worth of any one life to society was moving in the wrong direction. I felt the mistrust and disdain of others seep in. I was changing again and this time, I didn’t like it, but I also couldn’t stop it from happening.

As others got more comfortable with the idea of venturing back out into the world, hugging their people for the first time in months, I continued to sit at home, watching the progression of vaccine trials and rollouts. I listened to the stories of how good it felt to eat in a restaurant, to go on vacation, to see peers at work, all while explaining to my kids over and over why they couldn’t go for that playdate or to that birthday party, and I wondered how people like me had just been forgotten. I had become a liability to their mental health. A reminder that what they were putting behind them was not truly behind anyone. I wished that I could enlighten each and every one of them about what a luxury that is.

The loneliness became overwhelming. I took to social media – the medium that made cancelling my cable a moot point except for the hundred dollars that went back into my pocket each month. The experience in those spaces was much the same – civil unrest – be it people arguing over masks or vaccines or their freedoms being taken away, and let us not forget those among us who truly have had their freedoms taken away and who continue to go missing or had to watch their brothers and sisters being murdered in broad daylight by the people white kids learn to trust without reservation from their parents.

I couldn’t take it anymore. My loneliness and anger were darkening my spirit and I needed to create a voice for people like me. I took to Facebook. While I intended on raising the voice of the immunocompromised in the fight for equal rights to safety and consideration, I made the happy mistake of creating a group for immunocompromised people instead. It would have been naive to suspect I was truly alone in my struggle but watching the people flood in with words of gratitude for a safe space, who finally had a community to drop their shoulders and take a deep breath was both deeply saddening and comforting too because it meant people who truly understood was I was going through had found me, but they were also experiencing the same social isolation and loneliness that I was.

It took a few months for the group to take off. By the time we hit our first five hundred members, it was clear to me that there were others who were struggling with the same moral dilemma I was – ‘othering’ others. But in some cases, it went further than that. In some cases, the feeling I got from group members was much the same as I got when I listened to people on the news screaming at healthcare workers. Thankfully in very few instances, it was vile, hateful, and judgmental. It got me thinking about the similarities between both groups; the vehement deniers of science and the vehement supporters of science and when we broke it down that simply, it hit me – everyone was just afraid of something and fighting for what they believed in. In the staunch protection of their beliefs, they would not hear anything else. In most cases, this wasn’t really a monumental problem. Could we accept and move beyond our differences in things like politics and religion in the name of love? Often times yes. But in this instance, the belief that a global pandemic is a conspiracy, or that masks don’t work – despite heaps of scientific proof that says they do, or that vaccines are the government trying to poison or control us, could literally kill the person standing next to us in the grocery store, or pharmacy, or Service Canada office. Even worse than that, those who choose to put the pandemic behind them and abandon protections (if they ever used them) could kill that person standing beside them and never know it because it could be a week, or two, a month or two, or even years later from long covid when their bodies finally give up. And when we don’t see the damage we are doing, it’s easy to dismiss any accountability. Here in lies the problem for me – but I’ll leave this on a cliffhanger for a moment.

The next thought-provoking experience was in 2022, after I had received my first full course of vaccinations, which as an immunocompromised person means three shots. After a year and a half of comforting and supporting my fellow immunocompromised friends who shared their experiences of going into public and watching the videos of people being harassed and assaulted in public for continuing to mask, I had developed intense feelings about being around immunocompetent people in public. I was disheartened, my hope snuffed out and replaced by resentment. My mother insisted I go into public and see what it was like for myself. She insisted lots of people still masked, as did she, and that no one had ever given her a hard time. It took me two days to muster up the courage to go out in the early morning to see for myself. What happened was eye-opening.

I walked through the hallways of the local mall, passing others who were masked and some who were not. I walked into a store to (pretend) browse. Just to see what it was like, to talk to a stranger – to remind myself of the little things that used to bring me joy – and what I experienced was a profound feeling of normalcy. Even though I was wearing a mask, and speaking to others who were masked, it just felt normal. People were friendly. Some were conversational and you could see the corners of their eyes crinkle when they smiled behind their masks. I wondered if when I smiled back they could see it in my eyes too. I went home after touching absolutely nothing at all and spent days pondering the experience.

Going out in public that day taught me an important lesson. When I did not see people throw masks for sale across the store floors, rip masks off of or cough on people trying to protect themselves, it occurred to me that what we see in social media, the stories shared by mainstream media, the even many of the stories shared by group members in my community who have been assaulted, abused and accosted by hateful people in public, these occurrences are less common than they are common. Especially in media, these are the stories that get attention because they are loud, disruptive and get our hearts racing. So, they get the air time. But what really sunk into my bones, what helped draw me back to hope and light was realizing how many good people there are in the world who are just trying to do the ‘right’ thing. And when good people are doing the right thing, they don’t scream it from the rooftops looking for accolades – they just do it. And so we don’t hear them. All we hear is the noise.

Two weeks ago was the three-year ‘anniversary’ of Covid-19. At this point in the pandemic, immunocompromised people have to be more vigilant than ever. As more and more people get comfortable taking off their masks, despite perfectly healthy people still dying from Covid-19 and becoming disabled from long-covid, as fewer people get boosted and put the pandemic behind them, many immunocompromised people learn new ways to become even more careful than they were. Some have gassed out and just given up, insisting on living what remains of their lives. Some have folded under the pressure and have gone back out in the world for fear of losing their jobs or impairing their kids with ongoing isolation. And I am exhausted trying to maintain positivity in a group that has grown to over sixteen-hundred people, many of whom feel left behind by an ableist society, and are very angry – with good reason. As someone who has tried valiantly to focus on self-love and self-regulation, I myself can not control my feelings at this point, so how can I ask the same of them?

As an activist who is working hard to raise awareness of the needs of immunocompromised people, I find it increasingly difficult to encourage my community to be understanding and compassionate as we seek the same from those who intentionally or unintentionally put us at risk. I also struggle with maintaining my composure in the face of people trying to do the right thing but who don’t understand the implications of their privilege as immunocompetent people. Having to repeat myself over and over again makes me angry too. How is it that after so long we are having the same conversations? Reminding people of what protection and support really look like? But knowing that they are trying, knowing that they exist out there trying, in their own way, to make things better gives me hope, where none has existed for the last while.

On March 22nd, I visited my oncologist for the hundredth or so follow-up visit since I finished IV chemotherapy in May 2018. I was nervous. So nervous, in fact, that I asked my husband to join me even though I had attended almost all of my appointments for the last three years by myself. My family doctor suspects that everyone in my house, despite our diligence, got Covid-19 in the spring of 2022, which tanked my immunity worse than it had been since being in active chemotherapy. I have spent the last year of my life in absolute terror. Every time my husband leaves the house for work, every time my children walk out the door for school, and every time I go to the grocery store and can count the mask wearers on one hand. Sure, there have been lulls, but I know of the lulls because of how diligently I checked the daily count in the news – until they stopped that, and then the public health website for wastewater numbers daily – until they changed it to weekly, so I can decide how dangerous it is for me to do anything on any given day and whether it’s worth the risk of severe illness or death. The constant vigilance has been utterly exhausting. I knew that if the results of my blood draw told me that my immune system had not yet recovered from my Covid-19 infection, it would break me.

The test results became available in MyChart (patient online access to things like test results and upcoming appointments) before my oncologist walked into the examination room and I thought I might explode. Every single one of the test results came back normal. Even the ones that had never been normal since the time we discovered I had cancer. The test results told us that I am completely immunocompetent. For the first time in more than five years, I am no more at risk of illness than any other healthy person out there. Minutes later, I sat in the drives seat of my car as my husband climbed into the passenger seat. I don’t get to drive much these days so I like to take advantage when I can. But sitting there in my seat, I held my hands out in front of me and looked down. They shook uncontrollably. I was shocked at my visceral reaction to the news but a moment later realized what was happening. All of the pent-up stress of living in fear over the last year was leaving my body. The realization that I had made it through the last three years as a highly vulnerable person and was coming out the other side of my illness alive and seemingly intact despite becoming infected by Covid-19 last year was astonishing. I said to my husband, “I think maybe you should drive.”

I spent the sixty-five-kilometre drive home thinking about what the good news meant for my family and me. From the perspective of our behaviour, it wouldn’t mean much. The reality, like it or not, is that Covid-19 is still a threat, and for my children, the worry is more related to long covid because the preliminary studies of long covid paint a grim picture of the future and I don’t want that for my kids. Might we move more in the world, in a risk-assessing way, donning our N95s? Probably a little bit, but as long as Covid-19 is a risk to my family, me, and every single human out there, we will continue to mask when it makes sense, wash our hands diligently, and stay away when we know we aren’t well. And I will continue to lift my voice and the voices of all immunocompromised people because regardless of what makes them immunocompromised, they are human beings, and they deserve our protection. And regardless of our opinions and previous experience of freedom in Canada, no one has the right to put the lives of others at risk. Most of all I have the misfortune of knowing how acutely traumatizing this has been for them and I never want to be a contributor to those feelings.

If you are an immunocompromised person looking for community, find us on Facebook by searching “Immunocompromised People Are Not Expendable” or by clicking here.

If you are not immunocompromised, my hope is that I have painted a picture that says I was fortunate enough to regain my health through the miracle of science, but that millions of Canadians can not and will solely rely on the actions of every single human to help keep them safe. And while we aren’t asking anything ludicrous, such as full mask mandates back everywhere and the limitation of movement, what we do ask is to stay home when you know that you aren’t well, wear a mask when it makes sense because it takes nearly zero effort and it really works, and even if you disagree, for the love of God, dig down deep and try to find some compassion for your fellow humans who are struggling. They are exhausted, beyond exhausted and it is the smallest kindnesses that can restore someone’s faith in humanity.

As for me, it’s been challenging to keep my legs under me through the last year. I kept myself very busy and it was a welcome distraction. Through the last few months that have been less busy, it’s been difficult not to lose my footing and so maybe I have not been paving my path as quickly as I had been or would have liked to but if there’s something that the last five years had taught me is that I must be kind and compassionate with myself, especially in the hard times. The trauma of the last three years has done significant damage to my psyche and I need to heal BUT hope is not lost. Now that I’ve been able to take a deep breath, it’s time to rest my soul, practice some restorative self-love, and get back to paving because there is still work to do, and it’s more important than ever.

Until next time, stay safe. We’ve got this, friends.