Hi from long Covid and fire skin

In which I explain where I've been

Dear everyone,

Since February, I’ve been navigating long Covid that triggered a reactivation of Epstein-Barr, which is the virus that causes mono. Until May, the line on the graph of my recovery was slowly and non-linearly trending up and to the right, but a few weeks ago I was set back by the worst flare yet. I’ve spent June in bed, save an exciting daily outing to my backyard for a little vitamin D and the novelty of being horizontal in a new location.

Celebrating my 49th birthday two weeks ago. I bought myself this zero gravity chair, which is as comfortable as it is hideous.

My symptoms have been severe fatigue and exhaustion, dizziness, rapid heart rate, having to stop and catch my breath after climbing a flight of stairs, brain fog that feels like the worst jet lag I’ve ever had, and most recently, a neurological development in which the skin on half my body feels like it’s on fire because my brain thinks it is.

I pushed myself to speak at a conference in March for work, which felt good while I was doing it, but then I crashed and spent the better part of a week in bed, sleeping 15-18 hours a day. I had to cancel the retreat I was planning on leading in May. I’ve passed out twice while walking to the bathroom in the middle of the night, the second time regaining consciousness as my torso flopped over the railing to the open stairwell below, blood rushing to my upside-down head. I don’t mean to be dramatic; I think I was mostly just dehydrated. But also, it was a bit dramatic.

In January, Lacy asked me what I most desired for 2025 and I said, “I just want to lie down for a year.”

I probably should have been more specific?

In 2000, when I got Hodgkin’s lymphoma, everyone told me I had to write about it: “girl with cancer” was primo material for someone who’d recently gotten their bachelor’s degree in creative nonfiction. I knew they weren’t wrong, but I didn’t write about it; I couldn’t. I beat myself up about that: what’s wrong with you that you can’t just keep a diary, what the hell else are you doing?

What I was doing was being 24 and managing all my own care, navigating the medical system, finding housing across the country for myself and my alcoholic boyfriend, scraping together rent from freelance editing on my off weeks from chemo, and doing my best to not die. But it didn’t feel like enough.

Since February, writing has felt very hard because brain no work good. I stare at the screen, typing and deleting, fingers moving haltingly forward and stopping short like a first-time driver trying to merge onto the freeway.

So I’m not writing. I’m not doing most things. I’m asking what is here for me like it’s a prayer.

I’m letting that be more than enough.

The Epstein-Barr in my body is now considered “chronically active,” and it turns out to be the thread that connects most of the seemingly unrelated illnesses in my past. This is a tricky condition, and there’s no prognosis for my pain beyond “weeks to months.” Antivirals are helping a bit.

Resting, breathing, meditating, asking for and receiving help, releasing expectations, letting fear and anger and sadness move, disappointing people without guilt, loving and being loved, making friends with trees, and having a deep inner knowing that I’m in exactly the right place and this is part of something—even though the experience of being here sucks!—these things are also helping.

So is the privilege of having the resources to see holistic specialists not covered by insurance, to take fat handfuls of supplements, and to work very part-time from home (fortunately, my brain and bod seem to be good with advising and coaching). I don’t have small children or caregiving responsibilities, I have a wonderful partner and friends. I’m fundamentally okay.

One of the ways I define healing is finding your way home to yourself, and I do feel more at home than I ever have.

Thank you for your support, good vibes, and general benevolence. I ask that you please refrain from offering medical advice, including diet, supplements, gadgets, gurus, journaling exercises, YouTube videos, or anything having to do with 5G — trust me, I’m covered.

Holly Whitaker

, my Quitted co-host and non-biological sibling, has a brand-new and fantastic podcast called co-regulation. It’s a space to explore the conversations so many of us are seeking (and having in our own lives) right now: How do we navigate this period of unprecedented transition and societal upheaval— not as isolated individuals, but as interconnected beings?

“This podcast acknowledges that we're at the end of an era defined by extraction, dominance, competition, and separation. We're being forced to move toward each other—to find collective solutions, to rebuild ways of existing harmoniously with the earth and each other. The path forward isn't through competition or meritocracy but through connection, mutual aid, and collective sense-making.”

The first two episodes are with Chris La Tray and J Wortham; the third is with me (linked below), and we recorded it in May, just before I had my latest EBV flare. I don’t know if I would recommend the crucible of transformation I’ve been living for the last few years, but it’s brought a profound depth and clarity to my priorities, sense of self, and relationships that I don’t think I’d have otherwise. Hol and I also talk about the intentional community I’ve built with five other women in my city, and practical strategies for building intentional adult friendships with agreements and conflict resolution; the difference between self-love and self-friendship; why real community is inconvenient but necessary; and discernment in relationships without guilt.

also, Bryan fell out a second story window two weeks ago (he pushed out the screen) and was totally fine. i was not fine.