Submission to The Social Lens: A Social Work Action Blog by John Richmond, MSW, RSW (ON, BC), Coast Care Consulting (Xwesam, BC)
Last year, on the morning of December 10, when I was supposed to be getting ready to head home to BC to work on my long-standing project of a co-operative governance model in long term care, I awoke struggling to get out of bed and to go to the washroom. My partner, a social worker with many years experience in stroke care, knew immediately something was wrong. Apparently, my speech was “dysarthric,” she later told me. Even though I am a clinical social worker, dysarthric was a word I had to look up – it means an “inability to speak clearly.” At the time I didn’t notice my trouble speaking, but I knew something was wrong. I had the same terrible headache I’d gone to bed with, and I could hardly move on my left side. I fell out of bed and my partner was hovering over me moments later. “You’re having a stroke. Try not to move. We’re going to get you help. You’re going to be alright.” She reassured me repeatedly.
Even now, months later, it’s difficult to recount these moments without us both feeling an overwhelming sadness.
As the ambulance and fire truck arrived at our home I was telling my partner, “I’m fine, I just need help to stand up and you’ll see I’m OK, I just need you to work with me. Please, you’re not working with me.”
In retrospect, as frightening as it was, having an ambulance and fire truck arrive in under 10 minutes was just the start of the many benefits I would have as a white, middle class, well-educated (thanks UBC) professional social worker employed in public health.
My privilege, I now realize, began with my partner being able to tell the paramedics what was wrong with me and where to take me in order for me to receive the specialized care I needed to survive what was happening in my brain. As I lay in the ambulance, my mind went to my own patients who sometimes must call 911 and have no one with them to advocate – no one to tell the paramedics what is wrong and what to do. Having a knowledgeable, caring and loving partner who could interact with other health care professionals, including the dispatcher over the radio as an equal, is a privilege literally none of my patients enjoy.
In thinking my dire situation over, between bouts of asking the paramedics “Give me something special, guys, my head is killing me,” I was also vaguely aware I would be well treated by the paramedics because I was “one of them,” looking like them, working in the same field, a privilege I had leveraged on behalf of my own patients in ER, ambulances and with police.
As the paramedics rushed me to a local hospital specializing in stroke care, they joked, “You can have the good stuff when you get to hospital, buddy. Don’t worry, Mr. Richmond, you’re going to be OK.” I don’t know if they believed it or not, but it certainly made me feel a little less fearful – after years of working in a variety of health care settings, including an Emergency Department and Trauma Centre, I knew what a stroke was and how serious it could be.
I still have a vivid memory of being rushed into Emergency, my partner at my side. They were expecting me, and a surgeon had already been paged to attend to my case. My partner knew the COVID routine well, showing her own ID to security and asking for a “visitor” sticker. The paramedics assisted, waving my partner in. In no time I was having a CT-A – a computed tomography angiography – a diagnostic process using an injected dye to enhance the image of what was happening in the blood vessels in my neck.
The CTA showed the stroke team – and it was very much a team – that I had a dissected artery in the right side of my neck. In other words, the artery was torn, most likely secondary to a bike accident a few days before when I struck my chin as I hit the ground. I was told what was happening, and that they needed to go into the artery to repair the damage.
I’ve since discovered from my friends in my stroke recovery group through the March of Dimes that many people who have had the kind of stroke I had don’t have access to the same rapid diagnostic and surgical intervention that I had that morning last December. Although blood clots had formed in my torn artery and moved to my brain, depriving my brain of oxygen and killing brain cells, the surgeon was able to repair the artery and install a stent – effectively reinforcing the artery wall, and use a tiny retractable claw to grab the clots and remove them, restoring normal blood flow and oxygen supply.
I woke up from the world-class surgery, unable to move my left hand and having trouble speaking. My left leg felt like a ten-ton weight was attached to it. People frequently say things like, “That must have been a terribly frightening thing” and it was. Being a health care professional, I knew that I was fortunate to be alive, and being a rehabilitation clinician I knew that while I probably had a long road ahead of me to recovery, my chances of recovery were good. Doctors, Social Workers, Occupational Therapists – many of whom looked liked me and shared my same privileged background, and some of whom I knew personally from other settings – treated me exceptionally well, reassuring me the surgical intervention had been both timely and successful.
Even as I sat in bed repositioning my left hand and foot to get comfortable, other benefits were kicking in. Benefits many of my own patients never enjoy or have access to. Income supports from work, a supportive public sector employer texting me “…take time to get better. We miss you. Don’t worry about anything, just concentrate on getting better.”
In the bed next to me lay a man, also a stroke survivor, who could not speak or move or even breathe properly. On top of that, staff suspected he had COVID – an entire family conference unfolded next to me, the kind I usually facilitate; discussing goals of care, advanced care planning, and end-of-life care. If I had been able to speak, I would have jumped in to help. It was a good thing I was temporarily out of commission.
Understanding what was happening to me and around me meant I was in a privileged position, one my own patients would never be in, to engage in meaningful conversations with my care team, and with the help of my partner, make informed treatment decisions.
It was tempting at times to see other patients as “less fortunate” than myself, but we know as social workers that often what unfolds from the moment something goes wrong, that it is the social determinants of health that broadly and specifically determine both incidence and outcome. One US study, for example (Reshetnayk et al, 2020), found that black people are both more likely to suffer strokes and less likely to survive them. According to the study, among the social determinants of health (SDOH) associated with increased stroke risk: race, zip code poverty, income, social isolation and health insurance. All the SDOH were working in my favour, from the moment my stroke occurred through to my discharge.
After five days in acute care my social worker had me transferred to another world-class health centre: Toronto Rehabilitation Institute (TRI). In the midst of the worst global pandemic since the “Spanish” flu. Thanks to workplace insurance, I was in a room of my own with a first-rate team of health care professionals working with me throughout the day to help my brain re-wire itself. “What are your goals?” asked my doctor. “To get back to my baseline functioning,” I quickly replied. Everyone laughed. “He even knows the lingo,” said my Nurse Trevor. A wonderful guy I will never forget. But it was true, I was among my own people in every way.
My stay at TRI was a testament to our public health care system, and in particular, to how well it works for those well positioned to take advantage of all it has to offer. As a former cyclist for whom cycling was as much a part of my identity as much as a form of transportation, I was offered a stationary bike, which I began to use as soon as I was able. As hard as it was to get through 30 minutes of cycling with my deconditioned muscles, the cycling restored my self confidence and helped to stabilize my labile emotional state (uncontrolled crying being a frequent occurrence).
One afternoon while cycling, a fellow patient I had started to get know, an Indigenous man same age as myself with a similar diagnosis, commented on how “lucky” I was to be doing so well. “Luck has nothing to do with it,” I replied, “unless you mean being born white and growing up in North Vancouver.” I stopped cycling long enough to have a quick chat about the “luck” of going to UBC, having good, rewarding and interesting jobs with a decent living wage and benefits. These benefits meant I could eat, read, shower and sleep quietly in my own room.
Later in my stay, my new friend and I and a few other patients we met through sit-to-stand and hand therapy groups, got to chatting about the social determinants of health, a concept they quickly grasped on a personal level. I shared free advice with my new friends, while trying not to interfere with what I knew was the challenging work of our amazing and very supportive social worker Paul.
After talking with my fellow patients, I began spending time worrying about where and how they would be discharged. Thanks to my mother, I discovered the poet Mary Oliver while I was in hospital. In her poem “I worried,” Oliver shares her wisdom gained through the ages. ‘’I worried a lot. Will the garden grow, will the rivers flow in the right direction…Finally I saw that worrying had come to nothing.” Much as I grew to love Oliver, this didn’t sit right with me. Inequities in health outcome based solely on socioeconomic factors seemed like a good thing to worry about and, in fact, while as a horticultural therapist I know that helping my garden grow is good therapy, worrying and perhaps doing something about the social determinants might be good for me as well, particularly as a social worker thrust by accidental luck into being a patient. A well-cared-for patient with a good prognosis. Worrying might “come to nothing” but it certainly seemed a good and normal place to start. What kind of a social worker was I if I wasn’t worried about my fellow patients and the inequities so evident right in front of me?
I thought about my own work helping people with chronic disease find the right kind of supportive living. I would often feel good about finding patients “the right treatment, at the right time in the right place,” as Ministry of Health bureaucrats like to say.
Now that I was a patient, and not a health care professional, the situation appeared a little different on the other side of the fence. I was looking forward to going home to my family and my cat, Rossie-Bubbles, with a few railings installed on the stairs and some routine and daily structure (courtesy of continuing virtual therapy, and plenty of support, not from underpaid and overworked PSWs but from my wonderful family). To be honest I suddenly felt a little less sanguine about some of the discharges I had arranged as a clinical rehab social worker. The social determinants of health and not individual health ‘choices’ such diet or alcohol use were affecting my own discharge and post-care plan (one cannot discuss virtual care without addressing issues of information inequity and the digital divide) in the same manner as my fellow stroke rehab patients.
As the social determinants of health would have predicted, months later my recovery is going well. As I plan to return to work (including my work advocating for governance reform in senior care that would give workers, patients and families a greater say in their own care and a direct stake in both management and outcome), I am mindful that as a society we must address social injustice and pubic health care funding, in ways that will ensure all people experiencing a stroke have equal opportunities not only for survival but also recovery. My own journey has been a testament to a great public health care system that, while often good at clinical care, ignores the intersectional lens at all our peril.
THE SOCIAL LENS: A SOCIAL WORK ACTION BLOG - The views and opinions expressed in this blog are solely those of the original author(s) and do not express the views of the UBC School of Social Work and/or the other contributors to the blog. The blog aims to uphold the School's values and mission.
