Immunocompromised and still recovering from a car crash, Medgine Mathurin found herself navigating the chaotic journey of chemo during the height of the pandemic. As her pillars of support crumbled, Mathurin was forced to reshape how she defined community.
My pillars of support crumbled and I was forced to reshape how I defined community
Medgine Mathurin · for CBC First Person
This First Person column is the experience of Medgine Mathurin, who lives in Edmonton. For more information about CBC’s First Person stories, please see the FAQ.
As I made my way to the outpatient clinic on a crisp October morning in 2021, I reflected on the events of the past few weeks: a car accident, a kidney biopsy and now low-dose chemotherapy to preserve my kidneys.
In the decade since I’d been diagnosed with lupus — a complex autoimmune condition in which my own immune system attacks my tissues and organs — I’d learned the importance of asking for help. The communities I’d come to rely on included my church, my family, my friends and an online community that I cultivated through years sharing my chronic illness journey.
Storms of any kind test our foundations, the footings, frame, roof and walls that keep a house standing. The storm that was COVID-19 blew mine apart.
Walking across Edmonton’s High Level Bridge, I breathed deeply and absorbed the changing colours. I’d made this journey three times already this month and each time, I was reminded of how alone I felt. The check-in FaceTime calls and text messages from friends had slowly stopped, leaving me to deal with the physical and emotional toll of chemotherapy by myself. How could I make them understand that I’m not OK? How could I tell them that I broke down in my nephrologist’s office because I was terrified of my kidneys failing? I was 32, single and ambitious — but I felt more fragile than ever.
Thoughts and prayers aren’t enough
In September, just two weeks before learning that I needed to undergo low-dose chemotherapy, my car was totalled in an accident and I was left with excruciating back pain, PTSD and no transportation. A friend used social media to rally support for me with food delivery gift cards and cash.
I experienced the power of shared vulnerability and saw how the internet can create community. Strangers and acquaintances alike came together to help in ways I’d never imagined. Friends who lived nearby dropped off groceries. It made me feel validated, seen and less alone. But as time passed and my treatments began, the support dwindled.
Scrolling through social media one afternoon after coming home from a round of chemo, I stumbled upon posts from people in my church community who dismissed the importance of wearing masks during a pandemic. I felt betrayed, angry and isolated. It made me wonder if they believed in the same Jesus who took care of the sick.
Not knowing who was safe, I became emotionally and spiritually guarded. Some reached out anyway but their “thoughts and prayers” didn’t help my nausea. On days when I was too weak to get out of bed, what I really could have used is a grocery run or someone to help me clean my apartment.
There was an ebb and flow to the support I received. Especially in the face of the pandemic, I knew it was possible they didn’t have the capacity to help me, but it didn’t erase my sadness and loneliness.
The truth is, my health condition is chronic and has no end date. I will always need support and friendship.
Resilient. And resentful that I have to be
As I continued to share about my health struggles online, I came to a realization: “double-tap” and heart emojis don’t translate into real-life support.
In the world of chronic illness, the #ChronicIllnessWarrior hashtag is often used to celebrate strength and the ability to overcome health challenges. But when I was left to problem-solve for myself, the word “resilient” felt overused and unhelpful.
The sobering truth is I was never given a choice to enlist in this battle. There was no pride as I was neck-deep in my own trenches.
Those two years were the loneliest of my life. I felt abandoned by those who promised to pray for me but never with me. My resentment deepened seeing others celebrate their lives while I struggled alone.
Building a strong community
But in the midst of it all, I chose to believe in the people who showed up for me, like the friends who surprised me with a birthday celebration that included a video collage with personalized messages, Zoom hangouts and a care package. Their unwavering presence during my darkest moments proved that our relationship was built on a solid foundation.
For the past year, I’ve been having hard and honest conversations as I carefully go about the work of rebuilding some relationships. I used to prematurely qualify people as friends based on proximity, similar values or passions. But these past years taught me to let people’s actions qualify who they are in my life, not what positions I want them to be.
As a result, I now have a tighter knit of people who are there for me in meaningful and intentional ways: a listening ear, a shoulder to cry on, or even a helping hand with mundane tasks.
I am forever grateful to those who show up. Not only did they offer a safe space to navigate a vulnerable season but they also taught me the kind of friend I aspire to be — one who is committed to a relationship that will withstand life’s inevitable storms.
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ABOUT THE AUTHOR
Medgine Mathurin is a Haitian-born multilingual poet and patient advocate living in amiskwacîwâskahikan (Edmonton). She chairs the patient family advisory committee of the Health Quality Council of Alberta and is the author of a multilingual poetry collection entitled Waiting in the Land of the Living/ Attendre dans le monde des vivants.