contents

forewords

As of writing this, it's been nearly four years to the day that a man dismissed my symptoms as resistance to meditation. You'll get that story in the earliest pages, gentle reader, so I won't continue it here.

This work is an attempt to capture the first three years of my psycho-spiritual experience of SARS-CoV-2. This is a personal story, about a specific illness now called Long Covid, and those with it called long-haulers. That said written, many moments in my Long Covid experience are also true for the broader experience of living with chronic illness.

If you live with chronic illness, I hope these pages validate and provide insight into your experience. If you don't live with chronic illness, I hope these pages illuminate struggles that are too often invisible or invalidated.

This book is not a log of my symptoms, not a medical record of stats and patterns. Nor is it a diagnostic tool or reference for Long Covid. Rather, it is an account of my intensely visceral experience. In reading, you will encounter many facets of that intensity, so please consider this your CN* for illness, ideation, relationship struggles, and other difficult subjects.

Nor is it a neat, steady narrative. The timing and pacing are inconsistent, which reflects the dissolved time of those years.

Speaking Typing of time, you might have noticed that this book begins in 2019. Covid was not widely known until 2020, which means that when I first fell ill, I was without the full context. I was an early adopter, albeit unwillingly and unknowingly.

Since then, the combination of blurry memories and cultural amnesia and overwhelming global events has rendered the recollection of significant moments and developments foggy for many people. For this reason, this book has an appendix, with relevant resources, and a selected timeline.

In the first year and a half of my Long Covid experience, I didn’t want to talk about it. When I finally did, I hated it—so much so that I regretted saying anything at all, and I stopped.

Eventually, though, many caring, thoughtful people in my life started asking me to share. I was grateful for their genuine interest in my health. I still didn’t want to talk about Long Covid. But I also wanted to answer honestly, and I couldn’t condense my katabasis into a few paragraphs.

Which led me to writing about it, which was another thing I didn’t want to do. I never wanted to give words to this experience. Never wanted to imbue life into it, via language.

But all that not-sharing revealed that if I didn’t write this, one day I would start screaming…and not stop.

I wrote this because I needed to make mental and emotional space. To clear out the cobwebby muck (more of that later as well), so that I can do other things. And to share once, for whomever is curious, rather than tell this story repeatedly—a task which I know, in my marrow, I cannot do.

Instead of waiting until I’m “cured,” I decided to share about the three years after my first symptoms appeared. The story is ongoing. Life continues to emerge. Life itself—ever indefatigable—reasserts its inevitability.

*Content Notice = advance notice of intense, sensitive topics

In this space, honesty begins at the beginning. CN for Covid, Long Covid, chronic illness, chronic pain, ideation (throughout).

Additionally, in 2021, CN for murder and suicide.

Please do not continue reading if you tend to be on the edge of harming yourself or others. Please do not continue reading if you’re in a delicate space and might get overwhelmed. Please take exquisite care of yourself.

2019

I sat quietly on the ground, while the meditation teacher barely looked at me. Chin down, I didn’t stop the tears falling into my lap and onto the grass. I struggled to steady my shaking breaths in the gentle heat and humidity of a tropical autumn, and focused on not fainting.

I was ashamed. Ashamed, and angry at myself for that shame, given that nothing warranted it. And yet, his disinterest made me feel like a failure. I was ashamed about all of it.

In early November 2019, on the first day of a silent meditation retreat, I began exhibiting flu-like symptoms: fever, congestion, body ache, headache. I’d hoped that the meditation retreat would also feel like a semi-vacation. I was two flights away from home, across a continent and halfway across an ocean, and had surrendered my phone at the start of the retreat.

That first night, I slept poorly, restless on the cot in my tent, hoping I’d feel better in the morning. I hated the idea of telling anyone, but I was also skeptical of my capacity to participate.

And for good reason: the next morning, I nearly passed out in the first session. So I told the retreat manager, who told the meditation teacher. Rather than engaging with me directly—or asking any questions—he spoke to the manager, dismissing my experience as an adverse reaction to intensive meditation practice. He told her, loudly enough for me to hear, that my symptoms were common among people resisting the rigors of meditation.

In other words: I was having a tantrum.

I disagreed, but I had no residual energy to advocate for myself, to point out that I’d been meditating regularly for over a decade. Instead, while my tears spilled onto my lap and the grass, the gentle heat and humidity of that tropical autumn felt smothering.

Meanwhile, the retreat manager convinced the meditation teacher to allow me to rest for one session, then rejoin the group. I nodded my thanks to her and stumbled into my tent. I was worried about myself, but I was equally concerned about contagion for the other participants. Even if the meditation teacher didn’t care about them, I did. One of them was pregnant.

I slept for a couple of hours and felt worse. When I found the retreat manager after my nap, she said the meditation teacher insisted that I return to all the sessions. No more resting. Not even for the remainder of the day, with my fervent hope that I had a 24-hour flu and would feel fine the next day.

“No, he won’t allow you to miss that much time,” she explained sympathetically. “I’ll set up your space for the next session.”

In a flash, I found the strength to advocate for myself. “Understood,” I replied. While she nodded, I continued, “I’m leaving. I’ll start packing; please bring my phone to me right away. I’ll be gone in an hour.”

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