the journey begins-Santa Fe

DEPARTURE

So, I’ve begun my journey in search of clean air. The overarching question is – is there really a place I can go and feel different, feel healthier, have my energy and brain function more fully restored? I know nothing will be perfect, but I know there must be many healthier possibilities than the dusty balcony I’ve been sleeping on in New York City. The balcony has been a respite, a sanctuary and almost a home in the warmer months, but immediately unmanageable when it gets cold.

But I’ve decided it’s time to make my health a priority – above work and friends, above history—-so here I go – doing my best to understand my own mind as I go forward. I know that small, digestible legs will be best for me -- so I’m not too overwhelmed by the idea of leaving home and by the fact that for now at least, I am doing it alone.

When I left my precious dog companion with friends in Massachusetts, I cried and cried. I didn’t want to leave the brown-turning leaves and the crisp oncoming winter smell. I didn’t want to leave the friends I’d made and re-made just this year, and the small routines that made for sanity, and the possibility that this place, the country not too far from my beloved city, could be a solution. But it hadn’t been. I hadn’t found a way to make it be. So I was taking the next, more drastic step. Maybe just for the winter.

A lot of people with MCS come to the southwest on this search. What will I find here? What would it be like to live among other MCS people? Will it make me feel better or worse to acknowledge my illness and its potential for long-lasting, life-threatening harm? Is it possible to reconstruct anything like what I think of as my life—or will I have to start over, from scratch, keeping my health always in mind.

My first stop was Santa Fe, New Mexico, home of S., a filmmaker with MCS. We’d been talking about her footage for several months, and I’d decided that a semi-professional purpose would be a good way to frame my first venture into the southwest. So we’d arranged for me to visit for about a week, staying in her home. I knew I had another friend nearby where I could flee if things got impossible, so I got on a plane and went.

ARRIVAL

I arrived in Albuquerque in the early evening, and spent the night at my friend R’s house, sleeping in the bunk beds in his kids’ room. The rest of his house was ok, chemical-wise, with brick floors and not much upholstery, but the kids’ room was dusty with neglect and I woke up sick. I’d also rented a car that reeked of new-car-smell, so by the time I drove the 65 miles to Santa Fe, I was pretty zonked.

S. lives beyond Santa Fe, if you’re taking the highway from Albuquerque. You don’t pass through the city on the way, so it was hard to get oriented. I turned onto what looked like a vast plain of cacti, scrub pine and dried yucca plants, dotted with adobe style homes. If you look closely, you realize it is not really a rural landscape, but a planned community. It has a central marketplace with stores and a coffee shop, and even a clubhouse. The lots are at least 1.5 acres, so the neighbors are relatively far away. Dirt paths run through the vegetation, so you can run for miles towards any one of the ring of mountains that surrounds it all. Sunrise brings a magic soft-bright light that makes all the shades of brown and gold glisten. Sunset paints the landscape pink, then lavendar, then deep indigo blue. There are no street lights, so at night, you can see the Milky Way.

S. has chronic fatigue and MCS, and takes a lot of care to keep her home free of chemicals or anything that might come in from the outside. She leaves her street clothes in the garage, changes in the laundry room and dashes nude through the house to the shower as soon as she comes home, then changes into her organic sweatpants. Same for her guests – except for the nudity. It wasn’t as hard to get used to as you might imagine; sort of a coming-home ritual. The trick is to stay organized and never dash through the house in your street clothes for something you forgot upstairs.

Some friends bought this house for her, and she was able to renovate it for her MCS needs. This meant ripping out some carpet, so all the floors are tile; replacing the moldy bathtub with a new/used one; tearing out some trees (she is affected by pine smells) and covering the off-gassing kitchen cabinets with tin foil for a sort of poorwoman’s stainless steel chic.

She cooks in a toaster oven on the porch, keeps her fridge in the laundry room and all her furniture is metal & glass, except for the futon couch. It sounds depressing, but it actually isn’t. Her house is bright and cheery, simple but not drab. She’s definitely made it feel like a home, a place to cook and hang out and do puzzles and read. More of an inside home than I have had for many months.

I found a few spots, in the doorways, where there were strong rubber smells, which heated up in the sunshine. But overall, I felt better there than I have in awhile. I could sleep inside and wake up refreshed. The only downside was the incredible dryness and the altitude. I’d wake up parched, with a feeling of dust in my lungs, and a little dizzy from being at 7000 feet. But they take chlorophyll here to help build red blood cells and when I finally got some, it really seemed to help.

THE MOVIE...

S. herself had lived in Boston for many years, with more than 20 years of sickness. Two years ago, she uprooted herself and moved to Santa Fe. She is living here a year at a time, not fully committed to this strange new landscape. She seems isolated but not lonely, surrounding herself with beauty and friends and allies, and making steps back into the world of work and singing, which was her passion before she got sick.

Nearly 10 years ago, she set out with a camera to document others with chemical sensitivities. Her interviews are warm and honest, a conversation between people who understand this deeply misunderstood illness—and are not afraid to share its devastating details. Her footage, collectively, is an intimate portrait of survival skills, a document of the perversely practical steps people must and do take when they are unable to live inside.

So many of them voiced the feelings I have been struggling with this past four years. The refusal to admit that anything was really wrong, the ability to just get up and put on your office clothes and keep working, despite the fact that you are sleeping in a tent in the yard in the snow. The gradual acceptance of unacceptable symptoms: crushing fatigue, confusion, memory loss and the hideously understated ‘brain fog’: a sudden inability to think, react, emote or connect the way we’re used to doing and have done all our lives.

They all told stories of the gradual realization that something was wrong. The idea that it was depression or exhaustion; the progression through a variety of attempts to fix it, with diet, sleep, psychotherapy, and finally recognizing that it had to do with where you are – your home, your office, the environment of the everyday. Each one reinventing the wheel to discover the simple and life-saving fact that outside air was better than inside air. And so these women slept on lawns with an infant in a crib, camped in backyards through a Minnesota winter, lived in cars with space heaters jury-rigged so as not to light their temporary home on fire. These women are very far from insane. The illness creates its own logic. You do what you have to to survive.

And then, of course, as it inevitably would, the footage became reality. A., a former doctor, sick with MCS for over 15 years is one of S.’ best friends. A. is a dynamo, a committed activist around environmental issues, working to minimize pesticide and mercury iin downtown stores and in the water and fish supplies. She hikes two hours a day with the energy of an athletic, activist Californian, which she is.

A few days before, A. had been to the eye doctor, and gotten very ill in his office. Now, she was noticing floaters in her eye and feared the worst – a retinal tear. She knew she had to go back and see him again. On the phone with the doctor, she walked through the various medication options, trying to keep eye drops to a minimum, fearful of adverse reactions to drugs. Her elegant confidence gave way to a scientific panic – knowing so much threw her into a tizzy.

{I just watched. S. later said my eyes got big like saucers, like a kid unable to turn away from something new, immediate and terrifying. I knew this happened but was this a way I could even consider living? Was I this sick and not dealing with it, or was I just not this bad?

S. agreed to accompany her to the appointment the next day, and wait outside with her cell phone ready in case something really bad happened. Fortunately, nothing did. A. did not react to the eye drops, they were able to dilate her eyes and tell her that there was no serious problem. She came home, wiped out, from what she had learned was last week’s office pesticide spraying, but by the next day, we were climbing to the top of a mountain. S., on the other hand, who had spent ten minutes in the doorway of the office, was tired and brain-fogged for two or three days. Her chronic fatigue seems triggered by symptoms and the smallest exposure will ruin her week.

The downside of community. The need for healthy friends who understand the illness enough to help. For eliminating pesticide in doctors’ offices. The lessons are myriad, complicated and frightening.

The question of isolation looms very large--and the spectrum of decision-making around it. Do you choose to live outside the world, to become ‘strange’ as one woman said? Or do you risk some exposures, some hard days, to continue a productive, engaged and satisfying life? How many exposures are too much, how many does it take to build to that crash, when you are immobilized, devastated, permanently undone?

The women I met who make their homes in this desert landscape live a very different life than I can imagine. They have no regular jobs and few healthy friends. They commit one day a week to 'getting exposed,' i.e. going to town for groceries, errands, meetings, the usual stuff of life. S., a singer, sings sometimes, in smoky nightclubs, probably pesticide-ridden, but that's her own personal deal with the devil. They each seem to have made that deal-- balancing symptoms with happiness, social life and human contact. How will I ever figure out if it's worth it?