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.

contents

forewords

2019

2020

2021

2022

afterwords

resources

acknowledgements

forewords