How Did I Get Here, Part I
A lot of people have asked what the hell happened to you these past couple years that you keep referencing. I’ve been embarrassed to get into it fully because I felt I was really livetweeting about it as it was happening and so somehow, I assume everyone knows! I should know better. But I think since I am not actually going to write a Sick 2: Sicker, I should probably lay it all out. (If you are here to just read tips that can help you with mold toxicity/mycotoxin illness, I will get to it all at the end of these installments.)
So in January 2018, I fell apart. I turned 40, I had a breakup, I had a two-book deal. All of these happened in the span of a week or two. I thought that was it, why I wasn’t sleeping, why I could not focus, why the headaches and tachycardia and panic attacks and stomach pain were back. It turns out it, as it often does, that it wasn’t all in my head, as much as I tried to go there first.
The bloodwork first showed very serious anemia. I ended up at ER three times that January and each time I felt my biggest problem was not being able to breathe. I could not understand why. A part of me just assumed it was the fires that had ravaged LA that season, still lingering on top of the already lethal Valley air. Or maybe it was quitting smoking—I had earlier that year returned to smoking but kept it to two a day, which seemed not to do much damage to me. But it seemed there was more to it. Lyme again, I thought, but even that didn’t seem to make sense to me.
One night I called a friend on the West Side in the middle of the night, convinced I was dying. She had gone through Lyme herself and I assumed she’d say that was it. But she had another idea: “Sounds like mold. Are you in mold?” I said no, without knowing. I was in my parent’s 20-year old condo in Los Angeles—there was not a trace of mold I could see at least, unlike the apartment a city over that I had grown up in, where black mold was visible all over the bathroom. “Cross-contamination?” she offered. I had no idea. Mold had been off my radar for years—I had almost blocked it out because it was what triggered my Lyme collapse in 2012.
I decided to buy a portable oxygen concentrator since that and IV fluids that ER gave me were the only things that seemed to help. And immediately, I stopped my yoga practice. I stopped driving again. I stopped eating normal foods and went back to an austere anti-inflammatory diet. I stopped leaving the house.
I knew I had to return to NYC by February. I was invited to do the big BookforumValentine reading and didn’t want to miss it. Plus I had been away for months, on a series of fellowships and conferences. New York was where I lived. I had to go back.
I returned and did the reading and went about my freelancing and pretended I was not as sick as I was. I stay in a lot, hooked to my new oxygen, and didn’t even notice my Harlem apartment was about to become full-on disaster site.
It must have been just on the cusp of spring when I felt the sky fall. Or the ceiling, I should say. One day, as I was writing, I started to hear banging and began to feel bits of my ceiling come down. In my bedroom which connected to the bathroom, it was far worse. Someone was doing something upstairs,I told my landlord, who informed me it is just some demolition and renovation. They hadn’t rented the above apartment in decades so there was a lot to be done.
[me in a photo by Zach Gross, 2014, in the hallway of my Harlem apartment, outside my door]
My building in Harlem was 140-years-old, long-landmarked, a gem of considerable old-world beauty in the gorgeous Mount Morris district of Harlem. I loved my building and neighborhood with all my heart and never imagined leaving. Those six years, I would barely ever leave Harlem, the rest of New York holding little allure.
But it turned out that spring the corrupt landlords—who had let us nearly die of a gas leak a few years before, who had been served lawsuits for trying to kick out the many black tenants who were born there and who were being bullied out of their rent control—wanted to flip apartments fast. Another apartment adjacent to me was also being reno/demo’ed,as they put it. A new Whole Foods had finally opened in Harlem and everyone had warned things were about to get rocky.
I had no idea. I lost track of time.
One day, many days into a nightless insomnia I finally wrote my friends a mass email and told them I could not take care of myself. I need help please.When a friend around the corner came by, she was shocked to see my entire apartment covered in thick dust, me looking malnourished and seeming disoriented, my dog with his eyes bloodshot.
“You have to get out here,” she said. “Now.”
For the next month or so I slept at different friend’s apartments all around the city as my landlords promised they would be done soon.
They also promised it was safe. There was clearly lead paint as the building was old, but overnight it also felt like some kind of mold epidemic had erupted in my bathroom. My breathing had grown more labored. I was back to ERs now on this coast.
I flew to Los Angeles with my dog again. Back home, I was very altered, everyone could see it. There was no doubt I was ill. My Lyme doctor was in New Mexico and everyone thought it would be a good idea to see him again.
So somehow, I got to New Mexico. I was extremely ill and a week of IVs did little. I went back to LA. I got worse. I went to San Francisco and stayed with a friend for a month while I saw her doctor. She wasn’t sensitive to mold although chronically ill like me, and in her guest room I started to feel even sicker. I wondered about mold in that notoriously moldy city. I was now back to an ER, my first in San Francisco, where I watched her look annoyed, playing with her nails and roaming the internet on her phone, as I cried with doctors. She thought they should give me psychiatric meds as I was too anxious—she seemed to have suddenly nightmarishly joined those who thought I was going through some mental crisis—and I submitted to some horrific anti-convulsant which made my brain feel like cotton. I screamed and cried and watched my friend look away, from bored to annoyed, and realized that was another friendship I could never again fully submit to as hard as we tried in the months to come.
I went back to LA. I got so much worse. Summer 2018 was as bad as I had ever remembered. My best friend sent a caretaker to make me meals. The caretaker watched me with pitying eyes and wondered along with me what had happened. “I wish I could understand what you are going through,” she said one day as I paced the hall trying to remember when I last ate, when I last slept, what had happened these last many months, how on earth did I get here.
Eventually it felt right to give into superstition and repeat the rescue mission of six years before, the last time I had become deathly ill and required intervention. An old friend and an old student had driven me to Santa Fe to begin my healing with who became my Lyme doctor eventually and who got me to remission. Why not try that again?
The many months and lives in Santa Fe hell and more coming Friday (to be continued) . . .