How Did I Get Here, Part 2

If you read my memoir Sick, you might believe, as many do, that Santa Fe healed me. Some call it a “healing vortex.” I am not sure what that means, but in 2012 it did help me a lot. Maybe the altitude and its clear air, maybe the access to both allopathic andalternative medicine, maybe the community of sick people—maybe of all the equaled healing. Who knew.  In some ways Santa Fe could feel like a magic mountain of sorts—everyone seemed ill and in the process of some dramatic healing journey. Or at least that was my community. Until it was not.

I gathered two friends—one in LA who I knew online for years and another who had written me cryptic but kind twitter messages for years. The latter described herself as a fan of my work. It turned out she had studied with a prominent Iranian scholar. I felt okay with it when she answered my social media posts looking for someone to help me get to Santa Fe and perhaps be a temporary caretaker for a couple months as I stabilized.

I had hired a couple caretakers that season and they had mostly been disastrous as they were not people I knew. But I had no other choice. I could not afford Care.com caretakers. I felt I was on a timeline and that I was close to absolute disintegration. A friend, who saw me bedridden in my parent’s apartment in LA, said to me in that season, I didn’t realize you really meant you were dying until I saw you. She began to cry. She was someone I knew for decades but suddenly I could not even remember her name to thank her.

Dozens of doctors into the journey, it seemed clear to everyone I was suffering from mold toxicity /mycotoxin illness. My old Lyme doctor in Santa Fe said he could treat this although it would be a long journey. He, like everyone, emphasized that I needed a home. And that I needed to pause on my work.

I had after all stopped my book tour early. After several stops that rendered me practically paralyzed, I started to think this was not worth it. The lowest point was when New York public radio sent a car for me upstate where I was staying to come do a live interview and I had to detour the car to the NYU Langone ER. The show had no back up, they told me, and so they urged me to do the interview from the hospital. It is sadly fitting, I have to admit, one of the producers said. The irony was not lost on me: I was too sick to promote Sick. Here I was on a stretcher getting my vitals taken when the interview began. After that, I said never again.

So my LA friend and this caretaker fan from Virginia (I flew her in to do this) and I packed up and drove to Santa Fe. Just as it had gone in 2012.

Once in Santa Fe, I started immediately getting sicker. I blamed the altitude but I started hearing that with the break in their drought many old adobes were water damaged now and that Santa Fe was very moldy. I started not being able to tolerate any space. Even my doctor’s office felt bad to me.

My doctor immediately ran tests, put me back on cholestyramine ( the most common mycotoxin binder), started saline IVs (I could not tolerate lactated ringers; for my POTS 500 ml of saline dripped slowly over many hours worked best) and phosphatidylcholine IVs (best IV for mold), along with my old favorite ozone IVs at low doses. He did some neural therapy and frequency specific microcurrents. I started doing bee venom therapy, which I had done in the past to great success. Nothing was really working.

I realized I needed to control my living space and to get rid of everything I had brought from LA. I had already lost all my possessions in NYC thanks to the moldy apartment, but now I realized I could not risk these items either. It was possible I was what was making me sick.

I signed a lease for an apartment in the best part of town. I could not afford but it had horrific VOC problems, some mysterious paint that was supposedly non-toxic but that smelled wildly strong months after it had been painted.

Meanwhile the LA friend was gone and all I had was my caretaker. Let’s call her Dana. Dana was growing very attached to me. She was new to queer identity and seemed obsessed with talking about it. One night she took off all her clothes and attempted to embrace me while I slept. I was horrified and told her this could never happen again. She acted like someone sleepwalking. She swore it would never happen again because even she was shocked.

This is where I should have fired her but because I had no one—friends and family were a cross between too busy and skeptical and irked and depressed by me so all I could do was lean on strangers. 

So it should not have surprised me that one morning, when I was at my sickest, Dana took my credit card number and booked herself a flight out. It was also a day after I had paid her in advance for another month of service. I was paying for her every meal and Santa Fe experience on top of several thousand a month, all coming from my crowdfund. That she Dana and left truly should not have surprised me, but I was still unused to the cruelty chronic illness could inspire in some.

I was able to find another person, a young man new to town with a flexible work schedule, who could drive me around. I was also able to break my lease and was invited to stay with another older chronically ill couple in town.

Reader, I cannot get into the insanity that ensued in the next months, but again I should have known. The husband had an InfoWars sticker on his truck. The wife had spent millions on her various illnesses and was still sick. They treated their symptoms based on what a pendulum said and I let them “help” me that way too. Every day I got further and further from wellness, while also having to endure their conspiracy theories and neoconservative to libertarian rants. I slept in a tiny room in their mold-free house, dreaming of escape. 

But escape to what? It seemed what I really wanted was an escape from my body.

I paid them a small amount for “rent” and they fed me and came with me to doctors on occasion. I considered them friends, a family of some sort. Every time they said something bigoted, I would go to the bathroom and pray I could not throw up and tell myself I could endure this. I had no one, so you take what you can get.

At times I felt I was improving but there was always a setback. My headaches were horrific and I started getting ocular migraines. I still could not swallow right. My tongue was coated white and cultures revealed molds and candida. I was too weak for strong antifungals, but herbal ones made me sick too. I tried every doctor in town.

Eventually the couple said they had another sick friend in town who needed the spare room, but I knew they were done with me. I could not be one of them for so many reasons.

I realized Santa Fe had to go.

I started looking up mold groups online and my favorite became Mold Avoiders, where the group followed much of the mold avoidance style of a man named Erik Johnson. I realized many dismissed him but he was of the original cohort who brought CFS to the mainstream. He had been exposed to toxic mold in Tahoe in the 80s and had nearly died until he went to the desert and recovered enough to climb Mount Whitney in a short amount of time. We began messaging and he gave me great advice.

Mainly, he told me to let go of fear but it would be many months until I could do so again.

I knew part of getting well was getting out Santa Fe. Even my doctor agreed. There are limits to how we can help you here. My pulse oximeter readings were getting worrying—my oxygen was dipping into the 80s. 

I had meanwhile been diagnosed with probably CCI. A renowned doctor recommended to me in California, who mainly saw ME/CFS patients, had sent recent MRIs of mine to a neurosurgeon in New York. He had seen evidence of cervical cranial instability. He was also an extremely controversial surgeon, with over 30 malpractice suits. I knew his name from the New York tabloid press. He was often called “the butcher.”

I was exhausted by diagnoses. It seemed on top of Lyme and mold and POTS, I had mast cell activation syndrome (MCAS) which was a popular diagnosis of the time. But it seemed many with mold exposure had it. I also had EDS which sometimes went with POTS and MCAS. I had a lot of work to do to get well, it seemed.

My next stop was San Francisco, where I had many doctors and a place to live for some months—a residency in Sausalito. More strangers, more potentially mold spaces, more moving.

It turned out I would move thirtysomething times in one year until I got to New York.

[to be continued. . .]