Chögyam Trungpa:
Going beyond fear begins when we examine our fear: our anxiety, nervousness, concern, and restlessness. If we look into our fear, if we look beneath its veneer, the first thing we find is sadness, beneath the nervousness. Nervousness is cranking up, vibrating, all the time. When we slow down, when we relax with our fear, we find sadness, which is calm and gentle. Sadness hits you in your heart, and your body produces a tear. Before you cry, there is a feeling in your chest and then, after that, you produce tears in your eyes. You are about to produce rain or a waterfall in your eyes and you feel sad and lonely, and perhaps romantic at the same time. That is the first tip of fearlessness, and the first sign of real warriorship.
You might think that, when you experience fearlessness, you will hear the opening to Beethoven's Fifth Symphony or see a great explosion in the sky, but it doesn't happen that way. In the Shambhala tradition, discovering fearlessness comes from working with the softness of the human heart.
Tuesday, January 1, 2008
Back to the Real World
The next day, it was time for me to leave Susan’s. I’d planned to spend the weekend with R. again before flying home for Thanksgiving. I stopped at the little local mall, wrote for a bit in the coffee shop, visited the consignment store, picked up snacks at the grocery – normal tasks, further steps outside the white-clad purity of S.’ home, on my way back to reality. Then I headed to Albuquerque. I’d found the local music station and NPR, so the hour’s drive went quickly. I was looking forward to seeing R., but I didn’t know how grateful I’d be for the company of healthy people until I arrived. Once again, I felt my head become clear and solid as I headed down in altitude.
But being back in normal-world was a shock. I had adjusted more than I thought to the chemical-free landscape. I went with R. to run some errands and felt a little besieged: Kinko's emitted a powerful stench of ink and new carpet; the BBQ place we went for lunch served fatty meat, high fructose BBQ sauce, nutrient-free white bread and pickles that glowed with an artificial green. I’d been eating what S. ate, all organic, no flour or sugar, and it agreed with me, although it left me a little hungry. The BBQ place itself was relatively chemical-free, but its noise and light and loud talking shook me up a bit. Albuquerque’s not pretty or charming – the streets are wide, the exhaust is present, the sun was too bright. I didn’t realize how much I’d quieted down out there at the edge of Santa Fe with little company and not a trace of hustle-bustle.
Their energy, just being normal healthy people, telling stories and jokes, walking into a place without mention of its smells, living without fear of encountering bad air, was a huge relief. It lifted my spirits and I, too, was able to behave like a normal person. In Santa Fe, I'd been acutely aware of the smallest "exposure," the scented candles on the Plaza, a whiff of woodsmoke, a friend's undusted home set off my chemical-antennae and I wanted to flee. Here, I was quickly back to my usual coping: ignoring small exposures, and trying to focus on conversation and being in the world. It's complicated -- how much is "masking," that is, pretending these chemicals are NOT affecting your body systems, and how much is surviving, insisting on being a person despite some symptoms.
From BBQ, we headed for Sandia Peak, one of the mountains that ring the city of Albuquerque, where we rode a cablecar up to the top, traveling 5000 feet up again. It was bone-chillingly cold up there, and the inside observatory was carpeted with something too toxic to ignore. I was happy to pick our way along a trail at the edge of the mountain face, looking down at boulders and across at pines. It was beautiful up there, and the sudden altitude change was my excuse for seeming so discombobulated. We stopped for hot chocolate in a wonderful wood-paneled old-school restaurant on top of the mountain, a ski lodge kind of place with a clock on the wall notifying us of the next cable-car down. I became fixated on the sprinkles on the cocoa, bright red & green, in the shape of Christmas trees.
It was hard not to be shocked at the kinds of things normal people put in their body. Fatty meat raised on a factory farm. Sauce that was mostly corn syrup. Sugary hot water and artificial chocolate. Red & green dyes. It didn’t take long, it looked like, to develop a worldview, where the EI life was “pure” and the real world was corrupt—metaphorically as well as literally polluted.
When I told R & P that I was going to sleep outside in their yard with the camping mat & sleeping bag I always carry, they took it completely in stride. P. even made me up a hot water bottle, which was a nice hot-steam addition before I went to sleep. They are on a busy street, and the car exhaust did make it through the fence, but I woke up refreshed in the morning, having tangled a little with their big black cats in the night. Their acceptance was ideal – that I could be ill, and quirky, but not confined to the company of only those in the same situation. Both of them knew medical crises – R. had had a stroke and P. a horrendous bout of kidney infection. Both of them now lived with chronic conditions, and P. especially, knew there were things you did to take care of it, most of all, accepting your ‘new normal.’ She was inspiring and supportive in a way I had never expected to find in a person who did not have this particular illness. We talked about the psychological legacy of having suffered an illness, or living with a chronic condition; in her case, of coming close to death, and how it makes you different, and how you just have to cope.
I wonder sometimes, not having come close to death, can I really see that? I am constantly switching back, second-guessing my ability to continue on in the normal world. Looking for a reasonable middle path.
There was a piece in the Times today about regret and resilience and how people develop psychological "complexity" in the wake of a lost future that can never materialize the way one planned.
http://www.nytimes.com/2008/01/01/health/research/01mind.html?8dpc=&adxnnl=1&adxnnlx=1199203543-WCkuO7QyVl3O9wmoJWhIiA
How much have I traveled away from regret and towards acceptance? Sometimes it feels like quite a ways; other times, I can do nothing but grieve.
But being back in normal-world was a shock. I had adjusted more than I thought to the chemical-free landscape. I went with R. to run some errands and felt a little besieged: Kinko's emitted a powerful stench of ink and new carpet; the BBQ place we went for lunch served fatty meat, high fructose BBQ sauce, nutrient-free white bread and pickles that glowed with an artificial green. I’d been eating what S. ate, all organic, no flour or sugar, and it agreed with me, although it left me a little hungry. The BBQ place itself was relatively chemical-free, but its noise and light and loud talking shook me up a bit. Albuquerque’s not pretty or charming – the streets are wide, the exhaust is present, the sun was too bright. I didn’t realize how much I’d quieted down out there at the edge of Santa Fe with little company and not a trace of hustle-bustle.
Their energy, just being normal healthy people, telling stories and jokes, walking into a place without mention of its smells, living without fear of encountering bad air, was a huge relief. It lifted my spirits and I, too, was able to behave like a normal person. In Santa Fe, I'd been acutely aware of the smallest "exposure," the scented candles on the Plaza, a whiff of woodsmoke, a friend's undusted home set off my chemical-antennae and I wanted to flee. Here, I was quickly back to my usual coping: ignoring small exposures, and trying to focus on conversation and being in the world. It's complicated -- how much is "masking," that is, pretending these chemicals are NOT affecting your body systems, and how much is surviving, insisting on being a person despite some symptoms.
From BBQ, we headed for Sandia Peak, one of the mountains that ring the city of Albuquerque, where we rode a cablecar up to the top, traveling 5000 feet up again. It was bone-chillingly cold up there, and the inside observatory was carpeted with something too toxic to ignore. I was happy to pick our way along a trail at the edge of the mountain face, looking down at boulders and across at pines. It was beautiful up there, and the sudden altitude change was my excuse for seeming so discombobulated. We stopped for hot chocolate in a wonderful wood-paneled old-school restaurant on top of the mountain, a ski lodge kind of place with a clock on the wall notifying us of the next cable-car down. I became fixated on the sprinkles on the cocoa, bright red & green, in the shape of Christmas trees.
It was hard not to be shocked at the kinds of things normal people put in their body. Fatty meat raised on a factory farm. Sauce that was mostly corn syrup. Sugary hot water and artificial chocolate. Red & green dyes. It didn’t take long, it looked like, to develop a worldview, where the EI life was “pure” and the real world was corrupt—metaphorically as well as literally polluted.
When I told R & P that I was going to sleep outside in their yard with the camping mat & sleeping bag I always carry, they took it completely in stride. P. even made me up a hot water bottle, which was a nice hot-steam addition before I went to sleep. They are on a busy street, and the car exhaust did make it through the fence, but I woke up refreshed in the morning, having tangled a little with their big black cats in the night. Their acceptance was ideal – that I could be ill, and quirky, but not confined to the company of only those in the same situation. Both of them knew medical crises – R. had had a stroke and P. a horrendous bout of kidney infection. Both of them now lived with chronic conditions, and P. especially, knew there were things you did to take care of it, most of all, accepting your ‘new normal.’ She was inspiring and supportive in a way I had never expected to find in a person who did not have this particular illness. We talked about the psychological legacy of having suffered an illness, or living with a chronic condition; in her case, of coming close to death, and how it makes you different, and how you just have to cope.
I wonder sometimes, not having come close to death, can I really see that? I am constantly switching back, second-guessing my ability to continue on in the normal world. Looking for a reasonable middle path.
There was a piece in the Times today about regret and resilience and how people develop psychological "complexity" in the wake of a lost future that can never materialize the way one planned.
http://www.nytimes.com/2008/01/01/health/research/01mind.html?8dpc=&adxnnl=1&adxnnlx=1199203543-WCkuO7QyVl3O9wmoJWhIiA
How much have I traveled away from regret and towards acceptance? Sometimes it feels like quite a ways; other times, I can do nothing but grieve.
Trading in the Car
This is a classic MCS problem, how chemicals in the world stand in your way. And a plea for some car rental company out there somewhere to stop spraying old cars with "new car smell", and stop hanging those fake pine air freshener trees from the mirror. Those things are filled with neurotoxins.
http://www.courier-journal.com/blogs/bruggers/2007/12/toxic-air-fresheners.html
So here I was. I'd arrived at the Albuquerque airport and rented a car from a commercial company. Although I'd actually dragged the willing parking lot attendant around with me, sniffing the cars, looking for the most bearable one, the one I'd chosen was making me ill. I'd been living clean for a few days and the prospect of driving in that machine was not appealing. In New York, I would have ridden it out and gone to bed early, but here, where I felt good, there was no point in stubbornness. I was learning something from my new MCS pals – that it always takes extra planning, resourcefulness and effort to make ordinary things work. That’s easier if your days are fully your own, and you are no longer accustomed to an ordinary work schedule.
Since out here, I didn’t have a normal schedule, except in my head, I decided to take the trade-in journey. I drove the car back to the local Santa Fe car rental branch, my head spinning so much I could barely concentrate on pumping gas. The nice lady at the office drove me to a nearby hotel, where I took a shuttle bus to the Albuquerque airport. The shuttle bus, miraculously, was not filled with plastic smells, and my head cleared immediately on the drive – as we dropped 2000 feet. Another rental car company picked me up at the airport. They had been airing a car for me for a few days, as requested, and the traces of its dangling pine tree air “freshener” were almost undetectable. I drove it happily back to Santa Fe – now, I could come & go freely again on my own.
This trip had evolved, in a way, from a visit about screening footage, to the possibility of staying here, making Santa Fe part of my winter months of exploration. I had known when I left that the visit was an excuse to jumpstart my journey, a headlong risk wrapped in a professional obligation. And it dropped me right inside an MCS community – a group of people who knew exactly what I was talking about in my near-impossible search for housing.
Despite New Mexico's cold winters, my immersion in the MCS community made finding a place to stay seem possible. People kept using flaky language, like I was meant to be there, it was opening up to me…I don’t think that way, but I’m open to the power of suggestion. Indeed, a few places were unrented and available. I just had to test them.
For a few years, on and off, my partner and I had ‘tested’ countless apartments in New York and then in Westchester, briefly in New Jersey and then again in Western Mass. Gradually, our understanding grew – this was not just a fluke problem in my apartment. In fact, there were very few places where we did feel good. Our awareness grew of the quantities of chemicals commonly used in homes –bug killers, paints, varnishes, miscellaneous toxins that traveled in from nearby dumpsites, nuclear reactors and power plants. Sprays for tree beetles, chemical fertilizers, tar for driveways, gasoline-powered leaf blowers. It was endless. The suburbs, in many ways, were worse than the city, where at least there were no lawns to care for.
We settled for awhile in a place in a wonderful town along the Hudson River. We didn’t really feel well inside except when the heat was off, but there was a large private backyard where I set up a tent. After eight months of commuting to the city every day like nothing was wrong, I fled suddenly, back to my city apartment, which after months of sleeping in the fresh air, my body was able to tolerate again. Little did I know that that my snow-covered tent would be the last home I’d have for quite a while. Within a few months, I was sick again in the city and could not gather up the energy to renew a search. That’s when I began to sleep on the fire escape, on my sister’s balcony and on a friend’s porch in Western Mass. My after-work behavior became a closely guarded secret.
But back to Santa Fe. The first recommendation for a safe place to stay was a guest house near Espanola, about twenty minutes north of Santa Fe. Its website billed it as a place for “canaries,” and there was even a singing bird sound at the site. MCS’ers are often called canaries, as in coal-mine. If we die, the miners stay safely above ground.
http://www.newmexicoecocasitas.com/
When I called L., its proprietor, a chemically sensitive photographer and teacher, she explained to me that it had been sprayed with pesticide ten years ago. Determined not to lose her home as she knew so many MCS sufferers did, she put all of her resources into cleaning it. She enlisted some EPA scientists and some chemists from nearby Los Alamos labs. Wearing hazmat suits, they exploded canisters of sodium hydrochloride (??) inside her house, then rushed out. They heated the house up and left it for 48 hours. After six months of airing out, she moved back in and says she’s been fine there ever since. It sounded thorough to me, although Dr. A. was suspicious. I set off to find it. I thought if this place worked, M. could come join me and we could explore together the possibilities -- health, sanity, community, work, love--of living in Santa Fe. It would be remarkable to have a home again we could share, no matter how temporary.
Espanola is a different kind of place than Santa Fe. Big families, in compounds, a landscape of desolation suddenly broken up by clusters of flowering trees or a charming old church. Soft hills, dried grass the color of wheat. No tourists here. In A.’s description: drugs, pickup trucks, crime, pesticides. L., the guest house owner, was proud to live in “the real New Mexico,” not in Santa Fe’s fantasy-land. She loved her neighbors, she said. Her home was clean and arty, very inviting. She collected gourds to photograph, and they lay drying around the house, long and thin and twisted, an oddly appealing decorative touch.
The room for rent was bright and sunny, simply furnished with a concrete floor and a mini-kitchen, a one-burner hotplate and a toaster oven. Most MCS folks don’t cook with gas, and if they don’t have an electric range or oven, they use mini-appliances instead. Those toaster ovens seem cramped and stingy to me, and I'd been grateful this week for S.’ electric stove-top; it felt more human and gracious to have a few pots going simultaneously, and not be forced to tightly plan life around one burner and a tiny little rack.
But as soon as I walked in and focused on my reactions, I felt something. At first just a bit of particulate, passing her musty porch. But then I felt the familiar nerve-twitch of pesticides. The edges of my mouth drooped and and I started to lose my way in conversation. I felt myself nod and smile, and pretty soon, overdrive kicked in. I can fake it, but I'm sick, symptomatic, not really present.
Then L. began to tell me pesticide stories. The lady next door, who lived in an antique adobe now on the market, sprayed her trees, the organic farmer at the end of the block had a wholesale conversion ten years ago and gave up all pesticide use, but before that...; the IPM guy persuaded her to use ant baits in the yard, and then something else against the tick infestation in the house. Well, no wonder. It’s a miracle she’s ok, but she’s made her own adjustments. I don’t know if she lives with a certain degree of nervous system malfunction, or if pesticide doesn’t affect her the way it affects me.
Determined to save her home, she is not homeless, she lives in the place she loves. She teaches school in town; she is not homebound or disabled. She does digital photography in the back room. She knows it’s not perfect, but nothing is. It was very helpful to see, again, the range of decisions people make.
For what it's worth, this place is listed on the Safer Travel Directory, and other travelers should definitely be warned. To be fair, she promises nothing on her website, but I'd cross this off any safe list right away.
My next stop was not far away, in a place called El Rancho on the road to Los Alamos. Although it was not billed as MCS friendly, it was all-natural materials and I was interested in what that meant. And it was for rent by a lovely New York film editor who I’d met before I left home. His father had recently died, and he & his wife had decided to move back to New Mexico, where he’d grown up, to be closer to his mother. They’d bought the house but could not leave New York for another six months.
The house was gorgeous – earth tone finishes, sculpted wooden beams, and an incredible solid, comforting feeling of being inside an earth-made shelter. It was perched up on a small bluff, at the top of a steep driveway impossible in snow or ice. Halfway between Los Alamos and Santa Fe, it was in the middle of nowhere, although closer to Santa Fe than Espanola. Inside, it was empty and clean. But it had an unidentifiable smell – a cross between cologne and polyurethane, sticky sweet. I wasn’t noticeably reacting to it, but it was powerfully there, as if the floors, heated by radiant heat, were giving off something. We tried to ferret it out with our noses – he climbed on chairs to sniff the ceiling; I sniffed the fireplace (nothing) and the floor. I was not ready to commit to six months, winter was coming, and I’d been warned by S. not to live too close to a power line. This was yards from a small power plant. And so I thanked him and moved on – he’s a sweet man, soft-spoken, grey-haired, just approaching middle age but with the thoughtful affect of an older man, full of love for the incredible red-gold vistas that spill out around his new home. New Mexico is one of those places where, if you grow up there, it must be very hard to live anywhere else.
A little disillusioned, but not truly surprised that healthy homes were no easier to find in the Southwest, I sought sanctuary at my favorite Santa Fe café, a vegan place called Annapurna, with a tarot room next door and curtained booths you can hide away in. It has wireless, a magnificent assortment of teas and good warm food. Why, I figured, would it be any easier here? This was too risky – a place had to be perfect come winter, or we’d end up sleeping outside in the snow. That was not the point of this jounry: we needed somewhere warm. S.’ place was an exception, renovated inch by inch with all the intensity and need of someone who needed a healthy home. After a few hours of calming email, I headed back to find S. curled up on her couch watching ‘Grey’s Anatomy.’ What a relief.
http://www.courier-journal.com/blogs/bruggers/2007/12/toxic-air-fresheners.html
So here I was. I'd arrived at the Albuquerque airport and rented a car from a commercial company. Although I'd actually dragged the willing parking lot attendant around with me, sniffing the cars, looking for the most bearable one, the one I'd chosen was making me ill. I'd been living clean for a few days and the prospect of driving in that machine was not appealing. In New York, I would have ridden it out and gone to bed early, but here, where I felt good, there was no point in stubbornness. I was learning something from my new MCS pals – that it always takes extra planning, resourcefulness and effort to make ordinary things work. That’s easier if your days are fully your own, and you are no longer accustomed to an ordinary work schedule.
Since out here, I didn’t have a normal schedule, except in my head, I decided to take the trade-in journey. I drove the car back to the local Santa Fe car rental branch, my head spinning so much I could barely concentrate on pumping gas. The nice lady at the office drove me to a nearby hotel, where I took a shuttle bus to the Albuquerque airport. The shuttle bus, miraculously, was not filled with plastic smells, and my head cleared immediately on the drive – as we dropped 2000 feet. Another rental car company picked me up at the airport. They had been airing a car for me for a few days, as requested, and the traces of its dangling pine tree air “freshener” were almost undetectable. I drove it happily back to Santa Fe – now, I could come & go freely again on my own.
This trip had evolved, in a way, from a visit about screening footage, to the possibility of staying here, making Santa Fe part of my winter months of exploration. I had known when I left that the visit was an excuse to jumpstart my journey, a headlong risk wrapped in a professional obligation. And it dropped me right inside an MCS community – a group of people who knew exactly what I was talking about in my near-impossible search for housing.
Despite New Mexico's cold winters, my immersion in the MCS community made finding a place to stay seem possible. People kept using flaky language, like I was meant to be there, it was opening up to me…I don’t think that way, but I’m open to the power of suggestion. Indeed, a few places were unrented and available. I just had to test them.
For a few years, on and off, my partner and I had ‘tested’ countless apartments in New York and then in Westchester, briefly in New Jersey and then again in Western Mass. Gradually, our understanding grew – this was not just a fluke problem in my apartment. In fact, there were very few places where we did feel good. Our awareness grew of the quantities of chemicals commonly used in homes –bug killers, paints, varnishes, miscellaneous toxins that traveled in from nearby dumpsites, nuclear reactors and power plants. Sprays for tree beetles, chemical fertilizers, tar for driveways, gasoline-powered leaf blowers. It was endless. The suburbs, in many ways, were worse than the city, where at least there were no lawns to care for.
We settled for awhile in a place in a wonderful town along the Hudson River. We didn’t really feel well inside except when the heat was off, but there was a large private backyard where I set up a tent. After eight months of commuting to the city every day like nothing was wrong, I fled suddenly, back to my city apartment, which after months of sleeping in the fresh air, my body was able to tolerate again. Little did I know that that my snow-covered tent would be the last home I’d have for quite a while. Within a few months, I was sick again in the city and could not gather up the energy to renew a search. That’s when I began to sleep on the fire escape, on my sister’s balcony and on a friend’s porch in Western Mass. My after-work behavior became a closely guarded secret.
But back to Santa Fe. The first recommendation for a safe place to stay was a guest house near Espanola, about twenty minutes north of Santa Fe. Its website billed it as a place for “canaries,” and there was even a singing bird sound at the site. MCS’ers are often called canaries, as in coal-mine. If we die, the miners stay safely above ground.
http://www.newmexicoecocasitas.com/
When I called L., its proprietor, a chemically sensitive photographer and teacher, she explained to me that it had been sprayed with pesticide ten years ago. Determined not to lose her home as she knew so many MCS sufferers did, she put all of her resources into cleaning it. She enlisted some EPA scientists and some chemists from nearby Los Alamos labs. Wearing hazmat suits, they exploded canisters of sodium hydrochloride (??) inside her house, then rushed out. They heated the house up and left it for 48 hours. After six months of airing out, she moved back in and says she’s been fine there ever since. It sounded thorough to me, although Dr. A. was suspicious. I set off to find it. I thought if this place worked, M. could come join me and we could explore together the possibilities -- health, sanity, community, work, love--of living in Santa Fe. It would be remarkable to have a home again we could share, no matter how temporary.
Espanola is a different kind of place than Santa Fe. Big families, in compounds, a landscape of desolation suddenly broken up by clusters of flowering trees or a charming old church. Soft hills, dried grass the color of wheat. No tourists here. In A.’s description: drugs, pickup trucks, crime, pesticides. L., the guest house owner, was proud to live in “the real New Mexico,” not in Santa Fe’s fantasy-land. She loved her neighbors, she said. Her home was clean and arty, very inviting. She collected gourds to photograph, and they lay drying around the house, long and thin and twisted, an oddly appealing decorative touch.
The room for rent was bright and sunny, simply furnished with a concrete floor and a mini-kitchen, a one-burner hotplate and a toaster oven. Most MCS folks don’t cook with gas, and if they don’t have an electric range or oven, they use mini-appliances instead. Those toaster ovens seem cramped and stingy to me, and I'd been grateful this week for S.’ electric stove-top; it felt more human and gracious to have a few pots going simultaneously, and not be forced to tightly plan life around one burner and a tiny little rack.
But as soon as I walked in and focused on my reactions, I felt something. At first just a bit of particulate, passing her musty porch. But then I felt the familiar nerve-twitch of pesticides. The edges of my mouth drooped and and I started to lose my way in conversation. I felt myself nod and smile, and pretty soon, overdrive kicked in. I can fake it, but I'm sick, symptomatic, not really present.
Then L. began to tell me pesticide stories. The lady next door, who lived in an antique adobe now on the market, sprayed her trees, the organic farmer at the end of the block had a wholesale conversion ten years ago and gave up all pesticide use, but before that...; the IPM guy persuaded her to use ant baits in the yard, and then something else against the tick infestation in the house. Well, no wonder. It’s a miracle she’s ok, but she’s made her own adjustments. I don’t know if she lives with a certain degree of nervous system malfunction, or if pesticide doesn’t affect her the way it affects me.
Determined to save her home, she is not homeless, she lives in the place she loves. She teaches school in town; she is not homebound or disabled. She does digital photography in the back room. She knows it’s not perfect, but nothing is. It was very helpful to see, again, the range of decisions people make.
For what it's worth, this place is listed on the Safer Travel Directory, and other travelers should definitely be warned. To be fair, she promises nothing on her website, but I'd cross this off any safe list right away.
My next stop was not far away, in a place called El Rancho on the road to Los Alamos. Although it was not billed as MCS friendly, it was all-natural materials and I was interested in what that meant. And it was for rent by a lovely New York film editor who I’d met before I left home. His father had recently died, and he & his wife had decided to move back to New Mexico, where he’d grown up, to be closer to his mother. They’d bought the house but could not leave New York for another six months.
The house was gorgeous – earth tone finishes, sculpted wooden beams, and an incredible solid, comforting feeling of being inside an earth-made shelter. It was perched up on a small bluff, at the top of a steep driveway impossible in snow or ice. Halfway between Los Alamos and Santa Fe, it was in the middle of nowhere, although closer to Santa Fe than Espanola. Inside, it was empty and clean. But it had an unidentifiable smell – a cross between cologne and polyurethane, sticky sweet. I wasn’t noticeably reacting to it, but it was powerfully there, as if the floors, heated by radiant heat, were giving off something. We tried to ferret it out with our noses – he climbed on chairs to sniff the ceiling; I sniffed the fireplace (nothing) and the floor. I was not ready to commit to six months, winter was coming, and I’d been warned by S. not to live too close to a power line. This was yards from a small power plant. And so I thanked him and moved on – he’s a sweet man, soft-spoken, grey-haired, just approaching middle age but with the thoughtful affect of an older man, full of love for the incredible red-gold vistas that spill out around his new home. New Mexico is one of those places where, if you grow up there, it must be very hard to live anywhere else.
A little disillusioned, but not truly surprised that healthy homes were no easier to find in the Southwest, I sought sanctuary at my favorite Santa Fe café, a vegan place called Annapurna, with a tarot room next door and curtained booths you can hide away in. It has wireless, a magnificent assortment of teas and good warm food. Why, I figured, would it be any easier here? This was too risky – a place had to be perfect come winter, or we’d end up sleeping outside in the snow. That was not the point of this jounry: we needed somewhere warm. S.’ place was an exception, renovated inch by inch with all the intensity and need of someone who needed a healthy home. After a few hours of calming email, I headed back to find S. curled up on her couch watching ‘Grey’s Anatomy.’ What a relief.
Is Shelter Necessary for Creativity?
I feel that in Pittsburgh, the space to curl up on the couch and watch the afternoon light creep all afternoon across the stone face of the church across the street. To notice the cragginess of twigs against sky. To let my mind move forward and back in time, imagining possibilities: what if I could devote some time to making over the yard organic? What if I could be here to watch the leaf-mulch sink into the earth and produce new grass seedlings? What if I could replace my mother’s plastic herb pots with solid terracotta ones and line them up neatly on the window sill? Or trim the ivy residue off the back porch? Garden planning. Adding a bookshelf. Marination. Little life-building adjustments that require time inside, not just dashing in & out in fear of symptoms. Sloppy flat words can develop into artful emotional ones. AThe world outside can be observed, sifted, brought in. All the details we can love when we are healthy. Yardwork. Yellow leaves floating in the sun. A lost broom. A found rake. It’s endless. There’s startlingly little depression here. Energy flags and reawakens. I am not always disappointed in myself, running out of steam, angry, irritable, strained. A psychological or creative wall can be hit and recovered from. Its value integrated into what's next. New questions asked, synthesized. Is the blog ready for Freud?
Two unknown women, surviving
Still in Santa Fe:
Settled in (or out), protected from the wind behind S.’ house, I keep watching footage. I’d been taking in tragic stories for days. Women, primarily, who had abandoned their homes, their families, their jobs, in search of air they could reliably breathe. Or, the lucky ones, for whom everything crumbled only temporarily, flat on their backs with brain damage and heart trouble for months, but able, with money and support, to rebuild their lives by building themselves a home. Somehow, as closely as their experiences paralleled mine, literally or emotionally, I was able to keep my critical filmmaking distance. I wasn’t moved or shaken; I didn’t cry.
Then I came to Bonnie & Julie’s story: two young Jewish women with small children and husbands, with dark hair and dark eyes and familiar accents. Bonnie had first gotten ill lying on her brand-new carpet in her super-insulated house in Maine, playing with her newborn daughter. Julie’s son had been terrifyingly ill since babyhood -- his skin burst into bleeding sores, he had raging fevers and uncontrollable tantrums, screaming for six hours nonstop. These two women found each other in Sedona, Arizona, having both left their lives on the East coast for a climate that might give them some relief.
In the footage, the two families hold a seder, outside, with their children, against a vague background of suburban desert vegetation. Bonnie’s husband, a rabbi, leads the simple service. The children fidget, dutifully holding open their prayer books. They sing a song. The scene is badly shot, the camera spedns too much time with the father, then skitters by the children. But you don't have to see it clearly to imagine what's going on. I burst into tears at everyone’s innocence. Their effort to be a normal family was so simple and yet so immense, such a gigantic leap of faith and so unbearably fragile – like a crystal goblet teetering at the edge of a vast, rocky canyon.
For one day, they had stepped outside the circle of their besiegement. Outside the fact that their neighbors, irritated at too many requests to reduce their chemical lawn care, had deliberately begun spraying pesticides every week. Away from the boy’s delicate equilibrium so easy to unbalance that a bagel or a whiff of his grandmother’s perfume would send him into feverish, screaming fits. Leaving behind the tensions plaguing a marriage where one partner is often incapacitated by ordinary things. They had created a sacred circle, literally, and it protected them, for at least this single beautiful afternoon.
Despite it all, they had a family. Bonnie called her toddler daughter, just showing the first sign of chemical sensitivities, a ‘gift from God’. She had set up her infant’s crib on the lawn with her when she was forced to sleep outside. They were doing this all wrapped in the dynamics of a family. I was overwhelmed by that-- and heartsick. I was barely capable of dealing with this sickness alone. When I was sick, I only wanted to be by myself. Although I craved support, I couldn’t ask for it and wasn’t getting it. Relationships were strained and combative. How were they able sustain loving relationships—and keep the overwhelming loneliness at bay?
Settled in (or out), protected from the wind behind S.’ house, I keep watching footage. I’d been taking in tragic stories for days. Women, primarily, who had abandoned their homes, their families, their jobs, in search of air they could reliably breathe. Or, the lucky ones, for whom everything crumbled only temporarily, flat on their backs with brain damage and heart trouble for months, but able, with money and support, to rebuild their lives by building themselves a home. Somehow, as closely as their experiences paralleled mine, literally or emotionally, I was able to keep my critical filmmaking distance. I wasn’t moved or shaken; I didn’t cry.
Then I came to Bonnie & Julie’s story: two young Jewish women with small children and husbands, with dark hair and dark eyes and familiar accents. Bonnie had first gotten ill lying on her brand-new carpet in her super-insulated house in Maine, playing with her newborn daughter. Julie’s son had been terrifyingly ill since babyhood -- his skin burst into bleeding sores, he had raging fevers and uncontrollable tantrums, screaming for six hours nonstop. These two women found each other in Sedona, Arizona, having both left their lives on the East coast for a climate that might give them some relief.
In the footage, the two families hold a seder, outside, with their children, against a vague background of suburban desert vegetation. Bonnie’s husband, a rabbi, leads the simple service. The children fidget, dutifully holding open their prayer books. They sing a song. The scene is badly shot, the camera spedns too much time with the father, then skitters by the children. But you don't have to see it clearly to imagine what's going on. I burst into tears at everyone’s innocence. Their effort to be a normal family was so simple and yet so immense, such a gigantic leap of faith and so unbearably fragile – like a crystal goblet teetering at the edge of a vast, rocky canyon.
For one day, they had stepped outside the circle of their besiegement. Outside the fact that their neighbors, irritated at too many requests to reduce their chemical lawn care, had deliberately begun spraying pesticides every week. Away from the boy’s delicate equilibrium so easy to unbalance that a bagel or a whiff of his grandmother’s perfume would send him into feverish, screaming fits. Leaving behind the tensions plaguing a marriage where one partner is often incapacitated by ordinary things. They had created a sacred circle, literally, and it protected them, for at least this single beautiful afternoon.
Despite it all, they had a family. Bonnie called her toddler daughter, just showing the first sign of chemical sensitivities, a ‘gift from God’. She had set up her infant’s crib on the lawn with her when she was forced to sleep outside. They were doing this all wrapped in the dynamics of a family. I was overwhelmed by that-- and heartsick. I was barely capable of dealing with this sickness alone. When I was sick, I only wanted to be by myself. Although I craved support, I couldn’t ask for it and wasn’t getting it. Relationships were strained and combative. How were they able sustain loving relationships—and keep the overwhelming loneliness at bay?
Shelter
I've been back from my Santa Fe adventure for some time now, but never finished recounting it. So it continues...
S. and I had some MCS negotiating to do to figure out the best way to screen her footage. The hard drives that stored it gave off a mysterious smell that made her sick. So S. didn’t want them in her living room and as a precaution, I only wanted them in my room with the windows open and fans on. So we set up outside, squinting into the sun, with the desert dust blowing across the computer. I’d been told there are tarantulas here, outside, like grasshoppers at home, but menacing instead of musical. Fortunately, the early November days were unseasonably warm.
MCS sends you outside whenever you can, because it’s a guarantee of circulating air, a relief from whatever poisons lurk inside. When your goal is to be outside as much as humanly possible, you develop a new relationship with the weather-- among other things, a new and boundless gratitude for a warm, sunny day.
When outside is only a place to pass through on the way to other inside places, you are not really aware of the weather. Superficially, of course you are – you bring an umbrella when it’s raining or a scarf when it’s cold, but this awareness has the snapshot, one-dimensional quality of a weather report: sunny, cloudy, chance of rain. Bundling up and walking fast gets you through the coldest city streets, but if you sit and try to work outside on a day towards the end of fall, you experience all the nuances: winds that herald winter, breezes in from the south or blustery gusts blown in from the moors of 19th century novels.
On the East coast, the coolness of the evening settles in gradually, so you can sit outside well after dark before the chill comes. But in the desert, the moment the sun goes down the temperature plummets twenty degrees. Suddenly, outside is impossible and you’ve got to run in, slam the door and wrap up in a blanket.
When I know I have an inside to go to, I love the cold. I love the winter that reappears each nightfall, the way the grey branches vanish into the deepening sky and how the windows rattle as darkness blows in. I approach shelter with excitement, like an Eskimo arriving home at his igloo, or a desert nomad reaching his respite from sandstorms. What an extraordinary achievement, the building of shelters.
S. and I had some MCS negotiating to do to figure out the best way to screen her footage. The hard drives that stored it gave off a mysterious smell that made her sick. So S. didn’t want them in her living room and as a precaution, I only wanted them in my room with the windows open and fans on. So we set up outside, squinting into the sun, with the desert dust blowing across the computer. I’d been told there are tarantulas here, outside, like grasshoppers at home, but menacing instead of musical. Fortunately, the early November days were unseasonably warm.
MCS sends you outside whenever you can, because it’s a guarantee of circulating air, a relief from whatever poisons lurk inside. When your goal is to be outside as much as humanly possible, you develop a new relationship with the weather-- among other things, a new and boundless gratitude for a warm, sunny day.
When outside is only a place to pass through on the way to other inside places, you are not really aware of the weather. Superficially, of course you are – you bring an umbrella when it’s raining or a scarf when it’s cold, but this awareness has the snapshot, one-dimensional quality of a weather report: sunny, cloudy, chance of rain. Bundling up and walking fast gets you through the coldest city streets, but if you sit and try to work outside on a day towards the end of fall, you experience all the nuances: winds that herald winter, breezes in from the south or blustery gusts blown in from the moors of 19th century novels.
On the East coast, the coolness of the evening settles in gradually, so you can sit outside well after dark before the chill comes. But in the desert, the moment the sun goes down the temperature plummets twenty degrees. Suddenly, outside is impossible and you’ve got to run in, slam the door and wrap up in a blanket.
When I know I have an inside to go to, I love the cold. I love the winter that reappears each nightfall, the way the grey branches vanish into the deepening sky and how the windows rattle as darkness blows in. I approach shelter with excitement, like an Eskimo arriving home at his igloo, or a desert nomad reaching his respite from sandstorms. What an extraordinary achievement, the building of shelters.
Wednesday, November 28, 2007
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?
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?
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