At the time we were first contacted about the series, we were living outside, as we ended up doing for a year and a half. It wasn’t by choice; Bekah’s immune system is compromised. She couldn’t tolerate mold, mycotoxins or a great many chemicals, i.e. the kinds of things that are found in most houses and buildings. Bekah has been diagnosed with Lyme disease, as verified by a Western blot test and Common Variable Immune Deficiency.
In New York, my apartment, as well as her parents’ and friends’ apartments, literally made her sick; right at the end she was living in the park. On the outside, she looks like a healthy, able-bodied person. On the inside, her nerve pain levels are off the charts: she has three blood infections (Babesia, Bartonella and Rickettsia), a staph infection in her nose, brain and heart issues that require more testing, and cognitive impairments. To top it off, while all of these symptoms are undetectable to friends, family, and strangers, we have a large stack of medical records from specialists and several hospitals that document this.
In order for Bekah to detox from the mold, we came to the desert and bought a van, stripped down to the bare metal. Three different specialists (Dr. Leo Galland, Dr. Melanie Geisler, and Dr. Mary Ackerley) confirmed that this was a wise choice. Bekah was deathly ill and I was in a sleep-deprived state of hyper vigilance. There was a heatwave building in the desert, her health was getting worse, I was running out of debt options and the specialists seemed baffled. Mold avoidance is a grueling, full-time job. At night, I would wake up in panic mode checking to see if she was still breathing. The isolation was getting to us. We were desperate.
It seemed like a beacon of hope when we learned that Netflix wanted to tell Bekah’s story. However, we were concerned when the crew from Docshop, the independent production company making the series, arrived to start filming and presented us with a contract that they expected us to sign it on the spot. Neither of us really understood this contract and wanted to wait a few days so we could have someone look it over. Docshop, on the other hand, wanted it signed that day. They said they couldn’t start filming until we signed. We had the impression that they were ready to pack up and leave and not include Bekah in the film. At the time, we didn’t realize how badly they wanted our story: two artists from New York City up in the Mojave Desert with face tatts and a painted van; Bekah, a chronically ill musician, poet, painter and tattoo artist, and me, a sculptor and streetwise Buddhist chaplain intern who had just received a full-ride to Harvard.