Chris - 42

The most challenging year of my life so far was from the Spring of 2022 to Spring of 2023. March to March almost exactly. In March of 2022 I got my first case of Covid-19, then a second bout of it a month later at a friend’s party to informally celebrate the passing of the pandemic. The irony is not lost on me. Even after the worst symptoms passed, I was still haunted by fatigue. I had received three vaccinations before this; my third in January of that year in fact. I’m not saying it was related, but people always ask if I’d been vaccinated. 

My symptoms included chronic pain, extreme chronic fatigue, brain fog, and heart palpitations. They would seem to pass at times, and as soon as I felt a bit more myself, I’d dive right back into my usual activities only for the symptoms to flare up again, typically for weeks. By July this had happened a few times and the doctor said I most likely had Long Covid. He explained it as an inflammatory response of the body that doesn’t subside after the initial infection passes. I’ve heard it explained by others as a kind of trauma response in the immune system.

I joined some online support groups and eventually was admitted to a clinic dedicated to people with Long Covid. Neither was particularly helpful. The online group was helpful in providing consolation and affirmation. There were people in the group who had had the illness since March 2020 and were still disabled by it. Some people had symptoms far worse than my own, like teeth falling out and worsened heart conditions. The worst case I heard of was a friend of a friend in Germany who lost mobility in all her limbs. No one could say when or if it would pass. It was scary and depressing. I often wondered if I would have this disability for the rest of my life.

The clinic was a frustrating experience. Overall, there was not a lot they could do. No one understood the condition - it was too new. There is no biological test could be done to verify the illness since it is not an infection, and studies were still in the early stages of finding any kind of treatment. The most the clinic could do was provide workshops on strategies to cope. Mostly, I would leave feeling even more isolated because they did not actually address any of my actual needs: assistance at home and financial support. Everything the clinic did could be boiled down to the message, ‘pace yourself.’ Which was frustrating to hear because I was already doing that. I hardly had any energy - how could I not pace myself? I will say, though, that the doctor there really took her work seriously and was very supportive and compassionate.

I largely felt very abandoned and forgotten at the time. Friends didn’t seem to understand the severity of it, and they didn’t seem interested or have the capacity to support me. I felt closer to friends in Melbourne and Berlin, who I’d talk to on the phone twice a week, than I did to some of my friends that live in the same city, who I’d see maybe twice a year. 

One saving grace was the men’s group I take part in. Those guys checked in every week. They never tired of hearing the anguish I felt. They always had my back. My therapist also helped keep things in perspective: people had their own lives; had their own preoccupations. It wasn’t malicious neglect. Some friends are support friends and some friends are just play friends. That period really highlighted which I had and which I didn’t.

In the meantime, my money was slowly bleeding away. I work in an industry in which 10-12 hour days is the norm. It was impossible to do that work at the time. I was lucky to muster 4-6 hours of productive energy a day, much of which was spent keeping up with life - cooking, cleaning, some contract work occasionally. I was not eligible for disability benefits at the time because Long Covid was too novel of a condition. Even though doctors could say I had the illness, and I could be admitted to clinics for it - the federal government still did not officially recognize it as needing disability support. That hurt. You think in a country like Canada which prides itself on providing social support you could rely on that government to catch you when you’re really ill. But it didn’t. I wasn’t eligible for EI at the time either. A saving grace was that I’m pretty good at budgeting, so fortunately I didn’t need a lot to get by every month. I would have been screwed if I had had a mortgage. Still, my savings slowly evaporated. When that was gone, I slowly used up my line of credit. When that maxed out, I sold the few investments I had to get myself out of debt. That got me out of the hole just to be able to go back in again to keep surviving.

I really had to lean on myself a lot at the time; it was too much for one person. Before getting ill, I was a pretty independent person. But that experience really showed me the importance of having community. It’s been a couple years since I recovered, and I am starting to recognize how traumatic that time was. I get very anxious and scared when I get sick now, for example.

But the craziest thing is I would never trade that experience for anything. 

Yes, it was hell. A dark night of the soul, as they say. But it was also truly transformative. I read more books than I had in years. I meditated twice a day - an hour in the morning, and an hour in the evening (one of the few activities I could do within my energy envelope). I had to confront the reality of uncertainty on a daily basis; and to recognize how habit masks that reality. I felt closer to spirit - that mysterious force that unites everything. I learned a deep empathy for the way our society treats the disabled and elderly (basically anyone unable to contribute to a capitalist society that equates human value with productivity). I learned the value of life, the value of health, and the value of community. I learned how empowering surrender is (to let go of what one cannot control to reveal what one can). In Gabor Maté’s book, The Myth of Normal, he has a chapter about illness as teacher; that’s what it was. Long Covid was an unpleasant teacher, for sure, but one that taught me a deep sense of humility and new depths of patience and compassion and what is important in life. It really was a spiritual journey.

Towards the end of this chapter of my life, I received an invitation to attend my 20-year high-school reunion. I saw a photo of my graduating class - just 50 of us - and in it, standing next to me, was one of my best friends at the time, Brad. I thought, “Man, I would love to see Brad again. To see him, and for him to see me, as grown men.” My heart swelled at the thought. A week after the invite was sent out, I got a call from a mutual friend who told me that Brad had died very suddenly in the night. An aneurysm in his spleen. I was gutted. I felt robbed of the chance to rekindle that old friendship. It has left me with deep regret that I hadn’t done so sooner. Just writing about it makes my chest heave and the tears spill. I left twenty years of friendship on the table because I was busy pursuing “better things”. There’s no getting that back. It’s a lesson I won’t squander.

My feelings of loneliness, isolation, and abandonment - as well as the loss of an old friend - brought to light my own participation in community, and how one reaps what one sows. I didn’t need community until I did. And when I did, I got what I had put in. Brad’s passing was a reminder that life is short. There might not be a second chance to show your love, or to be the person you want to be.

I don’t miss any opportunities to connect with people anymore. Or to say and show them that I love them. That’s what changed for me. The community that showed up for me when I needed it - and the community that didn’t - was the community I had shown up - or not shown up for - before I was ill. You get out what you put in, you know? And I hadn’t been putting in much. That’s all changed now. We all need each other. The idea that we have to do it all on our own is total garbage. One of the most vulnerable things we can do is ask for help. Another is to offer it. But do it. Do it even if someone is sure to say no. Community comes from shared vulnerability and shared support. Moving through conflict too.  

Since then, I’m in the best shape of my life. I’m working again and grateful to have an income. I’m grateful for my coworkers - we laugh a lot. I don’t prioritize work over loved ones; quite the opposite. I’ve also stepped up in my men’s group, leading meetings and encouraging guys to become their best selves. This last point is particularly important to me on the theme of community. There are a lot of men out there on their own, thinking they need to go it alone. There’s a lot of men out there that think this, but at heart truly want community. It’s a part of my personal mission to bring those guys in and help them step into the courage to open one’s heart. It’s a small thing in the big picture. But it is very much needed. Life is too short to hide your heart away. 

Music - Chris’s music choices during our photo session included Owen Ashworth, Gil Scott-Heron, Iggy Pop, Pastor T.L. Barrett, Vivien Goldman, The Rolling Stones and Bruce Springsteen.