Riding the COVID wave: What extreme care taught me about control.

The novelty of COVID isolation is wearing thin. We’ve baked enough bread, watched enough Netflix, and we desperately want to return to our daily lives where we feel we have some measure of control.

At the moment many of us are struggling with an utter loss of control in our daily lives. Our regular routines that include workplaces, family, sports, gyms, and church are out of reach. We rattle around our days feeling lost, and struggle for ways to seize control wherever we can.

All things considered, I am not particularly bothered by COVID isolation. Yes, I would love to see important people, and maybe get in a hike on the Bruce Trail, but for the most part my introverted soul is relatively content. I am happy enough reading, writing, and knitting.

To be sure part of my relative contentment is related to my comfort with silence and solitude. But I also think a fair bit of my well-being comes from the fact that I learned a long time ago that control of one’s life is an illusion despite what our communal paradigm suggests. Our worldview suggests that much is within our control; health, well-being, suffering, opportunity, and so on. Just eat the right foods, believe the right things, exercise, think positively, and life will unfold as you wish. And while I don’t want to minimize personal responsibility and the fact that we can, and do, influence much of our daily lives and health, it’s can be hard lesson to learn that there is still a great deal of life beyond our sphere of influence. My life as a caregiver taught me that in spades, and I think those lessons have become particularly meaningful during a global pandemic.

Canadian author Donna Thompson described her caregiving journey in her book The Four Walls of My Freedom. I have always found her description of caregiving apt. Before we fully understood the extent of Matthew’s fragile health, and its impact on me as his primary caregiver, I completely ignored the walls his complex care erected around my life. I believed that if I just thrashed hard enough, and continued to live as I wanted, those walls would magically dissolve. I was in control and I just had to show those walls who was boss. Yeah, I was wrong, and it took a crapload of bruises to learn that lesson.

Once I figured out those walls weren’t going anywhere I mourned. I became angry. I chafed at the restrictions those walls represented. I was resentful and jealous of those who could live beyond the walls. I saw my life as a wasteland of lost opportunities, never to be retrieved. My anger was never directed at Matthew, but God, “the system”, and other people, weren’t spared.

Once my anger had run its course and I grew tired of thrashing about my confined space, I started to take stock of my new surroundings. It wasn’t awful. And while those who know me know I won’t say that I started to celebrate those walls, I did learn that there was possibility within the space. While I don’t think I ever embraced the idea of leaning in -that’s too much of a quest narrative for me – I do think I learned to make peace with the life I had been given, and to flourish within the four walls of my own personal freedom. Those walls weren’t going anywhere. I couldn’t influence their presence or location, but I could decorate the space to my liking.

For the record, I am not suggesting embracing limitations when advocacy, education, and action will mitigate those restrictions. We must always heed a call to action and improves lives where and when we can. What I am saying is that there are some forms of suffering that are beyond our control and learning to accept human limitation is also an important part of the journey. Believing we have infinite control can be equally limiting.

I had to learn that I didn’t have a choice about the walls. The vagaries of life had put those walls around my life, and I could be forever angry or learn what possibilities might exist within the space. Like Victor Frankl described in his influential Man’s Search for Meaning, I had to learn that the control I did have was paradoxically discovered in embracing my lack of control. I couldn’t control Matthew’s illnesses and all that caring for a medically fragile child entailed. I couldn’t magically create a world that understood disability, and celebrated and supported extreme caregivers (though I could fight to create it). What I could do was learn that life wasn’t the vast horizon of endless possibility that my privileged worldview had embraced, and to adapt accordingly.

That my walls had windows was both a blessing and a curse. I was always aware of life beyond my walls. While I learned to be happy in my own space, I knew what I was missing. I watched friends take trips and pursue dreams, while I cancelled holidays mourned missed opportunities. While I lamented those losses over time the sting more or less abated. I allowed myself the space to be occasionally sad, but learned not to let my despair control me. I found a paradoxical sense of peace amid a life that was often mired in random chaos and senseless suffering well beyond my sphere of influence. I learned that control could be an illusion, and the best I could do was ride the wave of life and keep my head above water. Attempting to dominate a tsunami was a fruitless endeavour. There were times that all I could do was hang on and keep my eye out for dry land.

These are all lessons that have helped during COVID. isolation. I do what I can – isolate, wash my hands, wear a mask, follow the rules of exposure – but I know that at the moment I am riding the surf, and I just need to hang on until the water calms. The more I thrash the harder it will be to stay afloat. I have no idea how long this particular wave will last. What I do know is that in my life it hasn’t been the first big one, and likely won’t be the last.

It turns out that control, what little we have, can look a lot like patience and acquiescing to a power beyond the self. It’s a hard lesson to learn, mostly because it flies in the face of everything our world likes to believe. So hang on and look out for others who are riding the same wave. Give them a hand when you can. At times that is only form of control we have.

Mothers Day Reflections 2020: Visiting fairies and finding rainbows.

On the wall behind my desktop computer hangs a small wooden door. The door is painted a robin’s egg blue and depicts a tiny fairy seemingly floating atop a garden of flowers. The idea of a fairy door is that when you are not looking fairies quietly visit your utilitarian space, perhaps leaving behind some magical pixie dust of creativity and whimsy. I like to think my fairy door transforms my computer desk into a liminal space that allows beauty and playfulness to penetrate my world of sensible and practical work. The idea that fairies might have visited during the night while I slept ensures that I remain open to the unexpected, unusual, even”childish”; perhaps I even look for these things amid the work I do. The fairy door also reminds me to never take myself too seriously.

A liminal space is an area that simultaneously includes both sides of a threshold. It is a paradoxical and often disorienting location of both/and. In life, a liminal space can be a time right before a significant transition. For example, when you are no longer a high-school student, but have not yet started university. In these moments of liminality your identity is uncertain and it is often unclear how you are meant to act or feel. The way forward is hazy, and you often step into the unknown.

In these days leading up to Mother’s Day, so soon after my son’s death, many have asked how I am doing. I haven’t been able offer a clear answer. I am occupying a liminal space. I am the mother of a child with disabilities, yet I am not.

I am simultaneously overwhelmed by often conflicting feelings of grief and gratitude. Of relief and guilt. There are moments when I miss Matthew so much that the act of taking my next breath seems too challenging. These are followed by moments of profound gratitude for 21 years of his smile. I am thrilled that this year my other boys are nearby and safe, and I will spend time with these two amazing humans who call me mom. And then there are moments I am relieved Matthew is no longer suffering, and by extension neither am I. The unburdening of the claustrophobic sense of responsibility, fear, and anxiety that had become the air I breathe is noticeable. And a heartbeat later I feel guilty for that relief. I would trade that unburdened feeling to have a bit more time with my son. I worry I didn’t do enough, and that somehow I could have magically prevented his illnesses and death; yet I know that isn’t true. I know control in the face of medical fragility is an illusion. And I know all of these feelings are normal. Grief is the epitome of a liminal space.

Those who know me know that I believe in talking about chaos. I spent much of Matthew’s life trying to talk honestly about the challenges of parenting a complex child, only to be implicitly and explicitly told that I should tell stories of growth and transformation. I was told I was a superhero or Mother Teresa, when most days I felt like I was the EverReady Bunny running on a hamster wheel with life periodically throwing assorted obstacles in my path. That didn’t mean that I didn’t adore my son, or that I failed to see the beauty and joy of our life together. I just resisted a world that could only hear happy, triumphant stories, and made me feel like a failure for sharing anything else.

I am often frustrated by a world that demands Disney stories full of rainbows, when life is often the random cruelty of a Camus novel. I believe we do ourselves a great disservice when we don’t acknowledge and talk about the tumult of life. Even when people are struggling with life’s grief, and disappointments, our society insists we tell stories of transformation and growth. We fail to understand that joy and sadness, confusion and clarity, can and do exist in the same breath. We grasp for the easy answers found in the black and white, and fail to respect time spent in shades of grey where conclusions are elusive, but there is the ubiquitous hope of a rainbow.

Matthew loved fairies. His favourite cartoon was Tinkerbell. We often referred to Tinkerbell as “the drug”. If he was distressed and we couldn’t figure out what was wrong we would put on a Tinkerbell movie. Often the music and bright colours of the show would calm Matthew. Perhaps Tinkerbell was Matthew’s way of teaching me that magic and pain live in the same room.

I am reminded of Matthew, and his loves of fairies even when in pain, every time I look at the fairy door directly behind my computer screen. This passageway between a world of unimagined possibility and the predictability of my everyday life affirms not only the liminality of my workspace, but of life more broadly.

All this means that this Mother’s Day I don’t know how I’m doing, but that’s okay. I expect that tomorrow will be a day of simultaneous grief and gratitude. Of joy and sadness. Of anger and relief. Of confusion and hope. Of stormy skies and rainbows. The fairy door behind my computer screen reminds me of the overlap, and perpetual movement, between two distinct worlds.

Who am I now?

This past Monday I returned to the task of editing a journal article that I had started writing two months ago. The COVID pandemic, the province-wide shutdown followed by the frantic move to teaching university courses online, and my son’s hospitalization and death, meant that for several weeks I was in survival mode. I only worked on projects that absolutely needed my time and energy. Things like grading student work, and ensuring that important course content moved online, all while navigating an ICU admission during a global pandemic, left little space to work on other projects.

So it was only this week that I returned to writing my forgotten article. About five minutes into my work the opening sentence brought all of my efforts to a grinding halt. That first sentence read, “I am the mother of three sons, one of whom lives with profound disabilities and complex medical challenges”. This has always been how I introduced myself and my academic work. It is the opening sentence of many of my professional bios. My doctoral dissertation begins with a story about parenting my son.

My academic work focuses largely on the experiences of mothers caring for complex children. As a mother working in the field of caregiving ethics, where oftentimes the loudest voices are men who are not mothers and therefore speak about the topic with academic detachment, I felt it was important to ground my work in the lived experiences of women and mothers. I have always been committed to the belief that the experiences and expertise of mothers mattered in a way often not valued by the academic world, not to mention the medical and social services communities we mothers navigated on behalf of our children. As a result it has always been important to me to talk about my personal connection to my research interests. I wanted to assert the idea that my personal experience as a mother of complicated kid, rather than being a confounding nuisance that compromised my research and work, was the source of great learning, insight, and power. Being the mother of a child with significant disabilities became the foundation of both my personal and professional identity. In my mind, rather than making me less of an expert (as the ‘powers that be’ often implicitly and explicitly communicated), it became my ‘superpower’, to quote Greta Thunberg.

The messages of our society are often that we are “just” mothers. For me, this became the source of much anger. That anger motivated me to study what it meant to be a maternal caregiver, and that journey was empowering. I became utterly convinced that being a mother conveyed valuable expertise unavailable to professionals who lacked that lived experience. I began to speak with a new sense of confidence in my abilities and knowledge. Being a mother became the source of great pride. I would not tolerate the role being devalued by society, or the academy.

As a result I am finding that my journey of grief after Matthew’s death is unusually complicated. It goes without saying that I miss him everyday. But this week I also discovered that writing that opening sentence of my article became much more difficult. I struggled with the past tense. I didn’t know how to introduce myself and my work. If I was no longer a mother of a special needs child, did I still have a place in conversations about caregiving? What was my professional calling? Has it changed? A professional identity I struggled for years to discover and own, now seemed called into question. I find myself uncertain about my footing and direction.

Matthew’s Home: A year later.

A year ago today we finalized the purchase of Matthew’s house. We were so excited. We were so hopeful.

Matthew had experienced a protracted period of medical stability. He hadn’t been admitted to hospital in years. We hadn’t visited an emergency room. He hadn’t even had minor blips of the flu.

Matthew had settled into a comfortable routine of attending his adult day program, and spending evenings involved in a variety of activities. Attending the hockey games of our local OHL team was a particular favourite. We’re pretty sure he didn’t understand a thing about hockey, but he loved the noise, busyness, and particularly the pre-game laser show. The kid was busy!

In these more recent years I often joked that for a person considered “medically fragile” my son seemed pretty darn stable. Some days I even questioned whether the label was still warranted in light of his robust health.

I started to plan for Matthew’s adulthood. I joined a reading group of other mothers caring for complex care adults who were trying to forge meaningful, adult-based lives for their children. Our family had started exploring things like micro boards and lifetime networks to create a supportive team to care for an adult Matthew. We had established a home-based group of caregivers called “Matthew’s team”.

One of our goals was to establish a group of people to could step in and provide meaningful direction about Matthew’s care and quality of life if my husband and I could not. While predictions about Matthew’s life expectancy suggested it was unlikely he would live into his 30s, we were aware that young adults with disabilities routinely challenge medical estimates all the time. We figured Matthew would join that illustrious group, and that we had better plan for his care in the event that we pre-deceased our son.

I also knew that I could not, indeed didn’t want to, sustain Matthew’s complex care on my own, indefinitely. As a researcher in the field of caregiving ethics I knew how many of those stories played out, and it wasn’t pretty. With a system that rarely steps in and offers meaningful support to aging adults with disabilities, and their parents, I knew organizing Matthew’s adult care would be up to me. I was determined that we would defy the odds and that Matthew, and our family, would find a way to thrive. We were well on our way!

Along that vein we had trialled a shared care model with a group home from the ages of 18-20. The team there was wonderful and I learned so much during those two years. Mostly that I was never going to be okay completely letting go of Matthew’s care, and it made sense to explore other options.

Shortly after Matthew’s 20th birthday I began seriously considering a broad range of creative options for Matthew’s adult care. One day, while sipping coffee with a close friend who also parented a complex care young adult, I shared that in a perfect world an affordable bungalow would be listed for sale in our neighbourhood. Our kids could be roommates in a cool bachelor pad. I kid you not, less than three days later a two bedroom bungalow around the corner from us was listed for sale. We purchased it and started our journey of creating Matthew’s adult home.

In our dream Matthew would live with his best buddy. One of their caregivers would occupy the suite in the basement. A team of additional caregivers would work together to create a busy, fun-filled community life for our young men. We had plans to renovate the basement and contractors were poised to begin work this month. We had a budget, and had started establishing a team of caregivers who were excited to be part of a unique new model of community-based care. We were pretty excited about all these plans. COVID slowed things down somewhat, but we hoped to be hosting a huge open-house barbecue to show off the renovations in late summer.

In early December Matthew was admitted to the ICU and remained on a ventilator for two weeks. He was discharged just before Christmas and by February seemed to back to his old self. He was attending day program and hockey games. We were making plans for him to spend a stretch of several weeks at our family cottage this summer.

It’s weird how this medical fragility thing works. One of the best research articles I read described it like living with a time bomb. You don’t know when the bomb will detonate, or how bad the damage will be. Will there be a series of little explosions, or one big one? The bomb might remain dormant for protracted periods of time, leading those who live in its presence to let their guard down, and then wreak havoc with little warning.

The day our province began its COVID shutdown Matthew was happy and healthy. Matthew spent a sunny day watching Disney cartoons while I knit in the chair next to his wheelchair. We went out for a walk. I joked that I would likely continue with this schedule of Disney, knitting, and walks, for several few months. We knew with Matthew’s medical history we would be in COVID shutdown longer than most people in Ontario. I figured there were worse ways to spend a period of protracted isolation.

Two days later, with very little warning, Matthew’s breathing became laboured. He was ambulanced to hospital and back in the ICU by the end of the day. Initially we thought he might avoid intubation, but shortly after his transfer from the ER to the ICU it was decided he needed to be on a ventilator.

It wasn’t COVID, just plan old pneumonia in the end. Matthew died on March 29, 2020, less than a year after we bought his house and began this “Boys in the ‘Hood” journey.

Julie Keon, in her blog about parenting a medically fragile child, What I Would Tell You, talks about the ‘mind f*ck’ of life expectancy. Parents of complex care children make every effort to ensure their child leads a full life, all in the perpetual shadow of their expected death. We live with the knowledge that despite our best efforts, we cannot change the outcome. We know how our story will end, we’re just not sure when the final chapter will be ‘published’. It is difficult to live in such a space of constant tension, waffling between fear and hope. As much as we could, I like to think we chose hope.

Caregiving, vulnerability, and COVID: What did you expect?

Most mornings I read the Globe and Mail before tackling my day. Today’s headline outlined the spiralling death toll due to coronavirus in long term care facilities. Over the last several weeks there have been numerous articles discussing the impact of COVID-19 on people with disabilities and underlying health conditions, particularly those who rely extensively on front-line health care services. There is no doubt that our most vulnerable members of society are paying a very steep price during this pandemic. And by vulnerable members I mean both those who live with significant health conditions, and their caregivers; the two are deeply interconnected.

A few years ago I was part of a think tank exploring the needs of families caring for people with significant health challenges. The meeting gathered key stakeholders in our community, including health care agencies, government officials, people with disabilities, and caregivers. At the time I was the mother of a profoundly disabled teenager who was medically fragile. During the meeting, we were asked to provide feedback about how care could be improved in the community.

There were the predictable answers. Families need more respite. Communication between health professionals and teams must be streamlined to improve care. Waiting lists for services must be reduced, or ideally, eliminated. The transition between paediatric and adult care must be improved.

As the conversation continued I raised my hand and offered a different answer. I asked the government officials in the room to ensure that all the front line caregivers involved in my son’s care had a full-time job, with reasonable pay and benefits. I asked them to end profit based home health care and ensure health care dollars were spent largely on health care.

At the time my son’s home care team involved numerous health care professionals, but was dominated by practical nurses and personal support workers. Every single one of the nurses and support workers caring for my son worked part time, for multiple agencies. None had benefits. Since I also paid for some of my son’s care privately I knew that the front line care providers received less than half of the fees charged by the agencies. To give you an example, for private practical nursing I was privately billed $45/hr. The nurse received about $20/hr. In short, our publicly funded health care dollars were lining the pockets of private, profit-driven health care agencies.

The nurses and PSWs on my son’s home health care were usually responsible for multiple clients each day. Their travel time between patients was not compensated. Their days were tightly packed with clients, which at times translated to rushed care. All caregivers obviously worked in multiple homes, but many also worked in long-term care facilities as well, with the hope of eventually securing a coveted full-time position. As you read the COVID news describing the caregiving chaos in long term care homes, remember these jobs were considered MORE desirable than home care work by many of our home care team members because they at least provided a modicum of stability.

Asking for full-time jobs with reasonable working conditions for my son’s health care team was in part motivated by a desire to see the most important people in my son’s life well cared for. But, if I am being honest, the primary reason for my request was to optimize my son’s care. Health care providers moving between multiple environments move infections between environments – a huge risk factor for my son. Poor working conditions often translated to very high-turnover among my son’s care team leading to significant gaps in his care – both in terms of actual people providing care, but also in terms of the necessary knowledge of his care.

In our home we ultimately addressed these issues by self-administrating my son’s funds and privately managing his team, eliminating agencies altogether. Overnight my husband and I became human resource managers, responsible for scheduling, hiring, supervising, and paying our team. We employed three full-time team members, augmented my son’s care with a couple of part-time caregivers, and paid them reasonable wages. High staff turnover was eliminated. Only one part time team member worked at another site. There is no doubt my son’s care was vastly improved. However it must also be noted that this strategy is often only available to affluent families with significant resources, and an unusual ability to navigate and manage “the system”. I need to acknowledge my privilege.

Prior to establishing this home-team approach, there was no doubt that the less-than optimal working conditions of my son’s care team had a direct impact on the quality of my son’s care. Not to diminish the caring of the people involved. All were devoted, hard-working, wonderful people. But the environment in which they worked made it impossible to provide optimal care – even conspired against it.

It was very clear that my request to the government officials was unpopular. While other requests from stakeholders generated lively discussion and feedback from ministry officials, my request was met with stony silence and immediate dismissal. The ministry official leading the discussion simply asked for another comment from the audience. No response of any kind was offered.

So as I read the morning’s headlines about how our most vulnerable members of society and their caregivers are contracting COVID at an alarming rate I am not surprised. What on earth did people expect? Care has always been undervalued, ignored, and hidden. We expect care providers to care out of a sense of duty and deep well of compassion – and most do – often at considerable cost to themselves. COVID-19 is simply exposing the staggering costs caregivers often pay to ensure our most vulnerable members of society live dignified and safe lives. Our society’s willingness to value profit above all else, at the expense of the most vulnerable people in our communities, and the people who love and care for them, is our collective shame.

Thank you for staying home.

Its hard to believe that just a little over a week ago I was writing about COVID-19, anxiety, and parenting a medically fragile child. It turns out COVID-19 was the least of our concerns. For my son, it was plain old pneumonia landed him back in the ICU.

Eight days ago my son was ambulanced to hospital. He’s been in the ICU on a ventilator ever since.

It is an unusual time to be spending your days in the ICU. With each passing day the number of bulletins about COVID increase. The daily rhythm of the ward is disrupted and uncertain. The wall next to the nursing station is papered with news, policies, announcements, and recommended best practices. It has a big, hastily scrawled sign announcing “MUST READ: COVID NEWS” taped to the top of the collection.

My son has been moved twice in the last two days as the ICU is reconfigured, and reconfigured again, for an influx of COVID patients. My visiting has been strictly limited, but in an act of compassion I am still one of the very rare non-staff members allowed into the building to spend time with my son, and discuss his care. One day the ICU doctor started the discussion about my son’s care by saying, “it will be nice to talk about something not-COVID, because after this it’s all I’m going to talk about”.

My son is complex. His health is fragile. His lungs are compromised. But at the moment he is showing signs of improvement. The antibiotics seem to be slowly, slowly clearing the pneumonia that has so firmly taken hold of his right lung. There is hope he will be weaned off the ventilator, but there is no chance of that happening for several more days.

We have lived in the shadow of his possible death since birth, but we remain hopeful that this admission is not his “time”. We hope that we will have more years with him to enjoy his infectious laugh, his love of hockey games, bubbles, and musical cartoons.

The ICU team knows my son and are wholeheartedly dedicated to his care. The fact that he lives with significant disabilities has never been an issue. We have never been made to feel that my son’s care and life was “less important” because of those significant disabilities. It has never even been hinted that his fragile health made him less worthy of intensive and aggressive care. Yet I worry that a massive influx of COVID-19 patients into the ICU could change that conversation. The former ethics student in me knows that once utilitarianism takes over, people like my son can be seen as less deserving of scarce resources such as a ventilator. The stories from Italy about doctors being forced into such decision-making, particularly when combined with Facebook posts cavalierly suggesting COVID isn’t more serious than the flu and that social distancing is an overreaction, are nothing short of panic inducing.

Because you are staying home, “social distancing”, staying healthy, and therefore staying OUT of hospital means that the ventilator keeping my son alive will remain available to him. You are giving my very vulnerable son a fighting chance of surviving this bout of pneumonia. The fact that you are staying at home is making a very real difference to someone. From the bottom of my heart, thank you.

Abundance of concern.

Matthew is sleeping in today. Why? Because he’s not going to his day program.

Yesterday afternoon we received a message from one of Matthew’s caregivers. She and her partner have been advised to go into two weeks of self-isolation. She is well, however her partner’s colleague is a family member of a newly confirmed COVID-19 case. At the moment we’re not particularly concerned about transmission from this source. The likelihood is remote. That said, we remain concerned about the spread of the virus in our community more broadly.

We probably didn’t need to keep Matthew home today. No one is ill and our family is far enough removed from this recently identified source of the virus that we don’t have alarm bells ringing. But my son is medically fragile and spends his days with some of the most medically vulnerable people in our community. My feeling was that even if there was the slightest chance that Matthew could pass the virus along to a friend then he should stay home. The decision to stay at home today was not about Matthew, or us. Our decision to keep Matthew home was out of a desire to practice an abundance of caution, or to be more honest, an abundance of concern, for our medically vulnerable friends. Our decision to keep Matthew at home was more about being a good citizen and demonstrating concern for our community, than about protecting Matthew – though there is that as well.

Is this an inconvenience for me? Well, yes and no. Mostly no. I am an academic and I teach undergrads part-time. With the exception of in-class teaching, most of my job can be done from my computer at home. Even the in-class teaching part of my job can move to a digital platform in a pinch. In fact, I expect there’s a good chance that might happen before the end of the term. Universities and colleges all over the world are scrambling to move to distance learning models.

Today, I will miss out on a lunch date with a friend. I am sorry about that. I was looking forward to seeing her. But, I am a bit of an introvert. I have lots of reading and writing to keep be me busy. I will happily knit and work on jigsaw puzzles. Matthew loves cartoons. We have Netflix! He won’t complain if we binge watch Disney and Pixar movies. In fact, he’ll be thrilled. If I am desperate I suppose I could iron. I’d have to be desperate, though.

As a family living with a high-risk member of the population my guess is that our experience of self-isolation might be longer than the rest of our community’s. We may self-isolate sooner, and remain isolated longer. But we are fortunate. My job allows me the flexibility to work from home, as does my husband’s. Our financial security is not at risk. We will continue to be able to pay our bills. We have enough food and basic supplies in our home that we’ll be fine for a while. Because we are known to medical suppliers in our community, they will deliver supplies to our front porch if needed. Matthew’s pharmacy will also deliver medications. We have worked with these people for 21 years and they know our story. I have complete faith they will do their best to ensure our son’s care and safety. Staying home today, and possibly for some time, was about making sure we are also being attentive to others’ care and safety.

Between reason and panic.

This morning I received an email from my husband. A member of his immediate team at work had stayed home sick. His colleague had a fever, sore throat, and was coughing. Were we concerned? Should we take precautions? As the parents of a medically fragile adult son these are conversations we’re having almost daily now that COVID-19 seems to have arrived in Canada.

The above picture is of my son. It was taken in December. At the time he was in the ICU of our local hospital where he remained on a ventilator for ten days following a nasty bout with the common cold. My son is one of those people for whom COVID-19 poses a very serious risk.

My son lives with significant disabilities. He is medically complex. This means that as his parents, my husband and I are watching the COVID-19 news with increasing concern, at times alarm. We’re both struggling to find a healthy ‘place’ between being reasonable, and spiralling into full-blown panic. How do we protect our son knowing that experts are predicting that the virus will eventually arrive to our community?

If you had asked me a week ago if I was concerned I would have probably said I was no more concerned than I normally am during the cold and flu season. Every winter our household is particularly attentive to hand washing. We stay home if we’re sick. We keep Matthew home if he looks slightly “off”. We are cautious, but not paranoid. This is normal for us.

But I can’t lie. Over the last 48 hours the constant news of COVID-19 news has been a source of heightening concern. Yesterday evening I read several articles from reputable sources telling me not to be concerned. Five minutes later I read a post written by an Italian doctor who described a hospital that was reminiscent of a war zone where care was rationed based on survivability. My son would be considered to have low survivability so my anxiety notched up significantly after reading that article. Italy went into lockdown. I have heard from colleagues in the US who are scrambling to transfer their university courses to digital format because classes are cancelled for the rest of the term. I’m fighting the urge to freak out.

What alarms me most is that the virus, for most people, is mild. As a result the virus can move through our communities undetected. At the moment we only have one confirmed case where I live, though that number is expected to increase. I am worried that by the time the virus declares itself in our community it will be too late. My son will have been exposed, or worse, sick, and we will be caught up in the peak of the crisis. My son might be sick and I will be kicking myself for not being “paranoid” and self-isolating when I had the chance.

During my most anxious moments I wonder if we should simply go into some form of self-imposed quarantine today – no one in, no one out – until the peak of the virus has passed. Realistically that is the only way to truly protect my son. But that seems extreme, even paranoid. Living in fear is no way to live. But yet until the virus is contained, every day my son attends his day program, a community event, or comes in contact with people who are going about their daily lives including his parents, he is at risk of being exposed.

We have been caught up in overreactions in the past. My son was kicked out of nursery school during the SARS crisis because he attended a medical appointment at Sick Kids in Toronto. There were no cases of SARS in the hospital at the time, but that didn’t stop the nursery school from banning him for two weeks. During the H1N1 virus there was strong pressure to remove him from school because he had been exposed to the virus. The fact that he was on Tamiflu and had no symptoms was irrelevant. We have lived through panic and don’t want to be part of creating it.

During every outbreak, not to mention the annual cold and flu season, we struggle with how to respond. Many years ago I made a conscious decision that we would not live in fear. We wouldn’t be cavalier, or stupid, but we would not let fear dictate our lives. We would be reasonable. We would continue to go about our daily activities until there was evidence we should change. Raising our son in a bubble was not in his best interests, nor ours. But I am finding it difficult to define ‘reasonable’ at the moment. There is a sense that the rules of the game have changed.

At the moment we plan to keep on “keeping on” and live our lives. We will wash our hands and ask visitors to our home to do the same. We will ask people to stay away if they’re sick. We beg you to do the same. We will avoid higher risk activities, such as places with large crowds in tight quarters (ie: sporting events). And we will keep tabs on the situation while trying to keep our fear and anxiety at bay. But I would be lying if I didn’t admit that finding a happy medium between reason and panic is difficult.

COVID-19, Feminism, and Caregiving.

Caregivers, paid and unpaid, often bear the brunt of outbreaks. Paid caregivers cannot work remotely and many front line care providers are poorly paid, have little job security, and have limited benefits or none at all. They are forced to work sick – both because financially they need to, but also because people need to be dressed, bathed, and fed.

For home-based caregivers the situation is equally problematic. As the parent of a medically fragile young adult if my caregivers cannot work because they are ill, or if we need to impose a period of self-quarantine to protect our son, it means that I may be required to step into 24-hour care for an indefinite period of time. How long can I sustain that care before comprising my own health?

Society largely views caregiving as women’s work – women are expected to care out of a sense of duty and devotion. This means, that statistically speaking, caregivers are almost always women who are often poorly paid, or unpaid, Their work is demanding and poses risks to their health and well-being at times. Caregiving is usually invisible and undervalued by society. Caregivers provide care during private, and often socially taboo, activities such as toileting, bathing, and dressing. These are activities we don’t usually talk about. The work is performed behind closed doors. This creates a toxic situation where the work of caregivers is easily ignored and taken for granted. As a result, our society socially and financially benefits from the generosity and devotion of women who tirelessly show up, day after day, and perform exhausting and physically demanding labour that we’d prefer not to see or hear about.

Think for a moment. What if we had to pay unpaid caregivers? What if stay-at-home mothers, or women who support their parents, partners, and children with disabilities, all decided that they could no longer shoulder the burden of care and demanded support? What of COVID-19 means that support workers cannot perform their jobs? How would our world respond? Part of me would love to see that happen. The impact on society would be immense. It won’t happen because society leans on the fact that women care both because of their love and concern for the person requiring care, but also to be blunt, because no one else is stepping in to help. We are not prepared to see anyone, much less someone we love, remain isolated, alone, unbathed, and soiled in their bed. We will show up sick and provide care. We will provide care even when the situation far exceeds our abilities. We do this because we care.

Caregiving women pay a steep price on behalf of a callous world that undervalues their labour yet benefits enormously. Female caregivers, according to the research, are often isolated, exhausted, overextended. We leave our jobs, miss out on social activities, and experience emotional, physical and spiritual consequences.

Situations like COVID-19 bring the matter into sharp focus. What if our caregivers get sick and can no longer care? What about care providers who will work sick because there is no one else to care, or because they cannot take a sick day? To protect ourselves and our loved ones who might get ill we need to value the work of caregiving women at all times, not just during public health crises. This means that in care facilities we need to ensure that there is adequate staff who are reasonably paid, enjoy good job security, and who have excellent health care benefits. Unpaid caregivers who provide care for vulnerable people also require supports such as generous respite, as well as robust community-based supports for both the caregiver and their family member.

COVID-19 and Ableism

Over the last few days I have found myself thinking a lot about COVID-19: Should I be concerned? Should I prepare? What is the risk to my family, particularly my medically fragile adult son?

To the best of my understanding the coronavirus is currently believed to pose little risk if you’re relatively young, or even middle-aged, and healthy. While that may change as we learn more about the virus, for most of us even though we lack immunity to the virus, the symptoms of coronavirus will likely be mild. The very “mildness” of the virus is part of the problem. Infected people with low-grade symptoms tend to carry on with their daily lives, meaning they infect others. Again, not a problem if you’re young and healthy. But eventually these infected young(er) and healthy people will infect people who are high-risk like my son. It’s just a matter of time. In fact, it’s starting to play out in some parts of the world already.

Ableism is rampant in conversations about the virus. Conversations about the 1% of people who are at high risk for complications happen as if those lives are accepted collateral damage. The Globe ran an interesting article today about the ethical questions the virus presents. How will hospitals respond if there is a sudden increase in demand on scarce resources, in particular ICU beds and ventilators. 

My middle son spent most of December in the ICU and was intubated (meaning, “on a ventilator”) for almost two weeks. While we don’t know exactly what put him there, the common cold or influenza is the likely culprit. And, yes, he had a flu shot. My son lives with profound intellectual and physical disabilities. He has underlying medical complications which make him very high risk during flu and virus season. Coronavirus, if acquired, would likely pose a significant risk to his health. 

But here’s the thing. With aggressive treatment he recovered from his December hospitalization and by early February had returned to most of his daily activities. He was back at his day program, running errands with family in the community, and was attending OHL hockey games. 

The implicit suggestion in ethical discussions like these is that those most likely to respond to treatment will receive scarce medical resources. How will ableist assumptions impact these conversations? Will those with disabilities and underlying medical conditions continue to be viewed as collateral damage? The very idea that we are discussing whether scarce medical care might be offered to people like my son is ableist because it implies that their lives are somehow less valuable and worthy of intensive treatment.

I think my son could survive a bout of coronavirus. He kicked influenza like a boss in December – statistically a far more dangerous virus. What might kill him is a community that doesn’t see his life as worthy of scarce care.