Also, odds were that I would have to leave Santa Fe. While Santa Fe wasn’t nearly as bad as Berkeley, the outdoor air, oddly enough, carried too many toxins for someone as sick as me to recover, the patients said. One fingered fire retardants used on forest fires in the area as the problem. She believed that natural molds consumed the remnants of the fire retardants and that this changed the toxins they ordinarily produced, making them far more dangerous. I didn’t get her reasoning for concluding this, but the upshot was clear: I might never again be able to live in the house I’d built.
I dipped into the 900-page tome I had been sent, which turned out to be a compilation of Erik the Mold Warrior’s posts in various online forums. But as I read more of the book and the e-mail list, I often thought these people sounded like total wackos. For one thing, their theories got unbelievably elaborate. Mold, they said, occurred in plumes outside, so that you could suddenly be hit by one just walking down the street. Mold sometimes couldn’t be seen or smelled or detected in any way, except that it could make people sick. “Ick” was apparently undetectable to scientific instruments (but not to moldies!). There were suggestions that mold might cause nearly every malady known to man. People described reacting to their husbands, to their hair, to their own sweat. At one point, the patients began discussing the evils of airplane contrails and vaccines, and I felt a surge of anger at the universe. Really? I’m reduced to seriously considering the ideas of people who believe crap like this?
I thought back to my early distaste for the forum and my worry that I’d go down the garden path in pursuit of some nice-sounding theory and end up in a crazy, unscientific wasteland. Then, I had slammed that garden gate shut, but now I was standing just outside it, eyeing the path warily and peering at where it disappeared in the distance.
I was so much sicker now, and so much more desperate. Science sure as hell wasn’t likely to provide answers anytime soon, I had come to accept. And I knew I couldn’t continue the way I was going—I was running out of money, for one thing. It felt better to try something than to lie in bed and rot.
I did think that if I was going to pursue an unproven treatment as a Hail Mary pass, I wished it could be something with a solid scientific story behind it. Couldn’t I find my version of Lorenzo’s oil? Camp out in medical libraries and decode the illness, persisting in spite of the skepticism of researchers to save not just myself but everyone else too? I’d much rather be a scientific hero, rather than fairly well abandoning science altogether.
When I read the scientific literature, though, it felt like tissue paper to me, the findings fragile, with great gaps between them. There were thousands of studies out there, many of which identified abnormalities—but the abnormalities seemed barely related, and the studies were generally so small I didn’t trust them anyway. Plus, I was a mathematician, not a biologist; beating through the thickets of jargon was way more than my brain could handle, especially when my quarry—an effective treatment—seemed wily and distant. So my Hail Mary pass was going to have to be an idea generated by someone else.
I had zillions to choose from, of course: swallowing supplements or sticking to diets or pilgrimaging to “alternative” doctors. But I’d already tried a zillion supplements, and they never seemed to do a damn thing for me—no side effects, no intended effects. Special diets had been similarly useless, and most doctors had only taken my money. Even Klimas seemed out of ideas. All the other alternatives I contemplated seemed random and hopeless. I certainly wasn’t tempted by the several-hundred-dollar device to zap my wrist and somehow rewire my nervous system.
Also, if I could pull it off, spending a couple of weeks alone in the desert sounded pretty cool. I was feeling a bit better than I had over the summer and fall, though I had no explanation for why—all hail the Greek gods! It seemed like I might just be able to pull it off. Once I got set up, I figured it wouldn’t be too demanding, and I loved the idea of having an adventure even while I was so damn sick. Even if the theory turned out to be totally loony, at least I’d have a good story to tell from it.
I was struck by the key role a “good story” had in my decision making. Go to the desert for a while, retreat from society, have an adventure even while goddamn fucking sick: Nice story, I’ll take it. Conceive of the world as toxic and dangerous, see myself as unusually sensitive and susceptible, be constantly vigilant for (real or imagined) contamination: lousy story, obviously ridiculous. My enthusiasm for this venture wobbled as one interpretation or the other gained prominence in my mind.
But of course, a good story wasn’t necessarily true, and a nasty story wasn’t necessarily false. So I warned myself against getting so wrapped up in the value of the story that I blinded myself to the simple facts of the situation: Mold either was or was not contributing to my illness, whether I liked it or not.
At the same time, though, part of what made it a good story for me was that it cast me as adventurer rather than victim, and I figured an adventurer was much more likely to forge a satisfying life than a victim, regardless of the underlying reality.
I also noticed that when I contemplated this expedition to the desert, a sort of current ran through me, an energy that felt different from personal excitement. Ignoring it felt not just unwise, but somehow wrong, like I’d be going against some structure of the universe I was feeling.
At the same time, the insistence that I leave all my possessions behind struck me as outrageous, and buying everything brand new—a new tent, new camp stove, new clothes, new cell phone, new computer, even a new toothbrush—was going to be a ridiculous burden on my already eviscerated bank account. So I decided to go for some middle ground, taking as little of my own stuff as possible without breaking the bank.
The patients in the discussion group didn’t like that idea at all, and one of them recommended that I ask Erik the Mold Warrior about making that compromise. I hesitated: Erik’s writings had a strident tone, and he ascribed an unbelievably wide range of evil powers to mold. It wasn’t just unusually susceptible people who were affected, Erik argued. No, mold was a creeping menace that caused heart attacks, traffic accidents, cancer clusters. Erik had been warning the authorities of this great evil for years, decades even, but they hadn’t listened to him, and now, he said, he was giving up. When the menace had spread far enough, people would finally come to him and listen—no, they’d beg for his advice. The only question in his mind was whether by then it would be too late.
Christ on a cracker!
But in for a penny, in for a pound, I figured. I did as instructed and wrote to Erik, running my history past him and asking him if washing my stuff from Berkeley might be sufficient. I got this response:
Parts of Berkeley are so bad that anything that passes through has the potential to be a slammer. You just never know. Did you hear my story of getting sick at the UCB campus by a plume event, and having a friend die of a heart attack at the same time and place?
Washing stuff there might not be a good idea, and you can’t trust new possessions to be free of this special contamination.
This whole paradigm is just as brutal as the bio-warfare scenario I was trained for.
I groaned when I got his response. For one thing, he didn’t even seem to understand what I’d told him: I wasn’t planning to wash things in Berkeley, since I didn’t even live there anymore! Also, how could new stuff be contaminated—and if that was true, how the hell was I supposed to do this? Not to mention the suggestion that his friend’s heart attack was caused by a “mold plume”—I didn’t even want to go there.
I wrote him back with a clarification, and he said:
This is a tricky deal. The experiment only works if you happen to be lucky enough to break free of this contamination . . .
The real way to learn this is to go places with a moldie and have it demonstrated.
He explained that you have to learn to recognize a very subtle sensation as a sign that you’ve been exposed to mold, and initially, people tend to dismiss it
as insignificant. That’s why it’s so helpful to have a moldie like him along:
I literally have to insist, “You feel that? You feel that?” and when someone admits there is a slight perception, I say, “Remember it, for that feeling is plutonium to you.”
This did nothing to reassure me. Erik was advocating a completely different approach from the one my Facebook group moldies had: Instead of going to the desert to get clear, I should find a moldie to demonstrate the effect to me—an effect that might be so subtle I could barely detect it, and then the moldie would hound me into admitting some slight perception. Holy crap, this whole thing is dumb, I thought. Sounds like brainwashing.
I decided to share my doubts with the folks in the group. I started by saying, “Okay, I’m going to be totally honest with you guys: I’m starting to get a little creeped out.” I described the exchange with Erik and then said:
Here’s what I’m left feeling: NOTHING I do will ever be enough to be sure there’s no contamination. After all, my nose hairs could be contaminated! New things I buy could be contaminated! A car I rent could be contaminated! Someone could drive by in a car carrying mold spores! If one really accepts that any exposure continues the reaction—even to the point where you may not be able to tell whether mold is relevant for you—I think you’ve just dived into complete impossibility.
Overall, this seems like a hypothesis that can’t be refuted, and that’s pretty creepy to me.
The patients talked me down a bit, partly by admitting how ludicrous the whole theory sounded. One of them quoted Erik: “I didn’t make up the rules to this stupid game—I just learned how to play it.” They also said that “ick” is rare and that other biotoxins are less virulent and less inclined to cross-contaminate, so that my concerns about the complete impossibility of getting away from it were overblown.
And, someone in the group claimed, everyone who had tried mold avoidance “according to Erik’s instructions” had gotten better—though I took that with a grain of salt because it seemed like the only way to really follow Erik’s instructions was to walk naked into the desert, with no supplies of any kind. Anything short of that would leave room to say that someone who didn’t get better hadn’t done it well enough.
But I kept going back to Joey’s blog post, and each time, I’d cry. One memory in particular haunted me during this time, coming into my mind like a vision: When I was a teenager, my mother and I often hiked through the Santa Fe watershed with our dog, Ruby Jean. My mom would lean forward and swing her arms as she walked fast up the hills, and then on the gentle stretches, we’d walk hand-in-hand, sharing stories or simply listening to the birds and the wind. In the wintertime, Ruby would loop circles across the frozen reservoir like an ecstatic ice skater, and I’d be dazzled by the ice-crystal forest on top of the snow, sparkling like a glass palace. Officially, hikers weren’t allowed to go there at all, but lots of people broke the rules along with us. After my mother died, I spread her ashes in the watershed at an aspen-covered spot by the stream, marked only by a small branch I carved for her. A couple of years later, I was delighted to see that beavers had built a dam right at that spot. But for years now, I’d been too sick to hike to her grave, or to any of the other spots in the Sangre de Cristo Mountains that were so sacred for me. Over and over, I thought, If I don’t get better, I’ll never be able to visit her grave again.
Each time I reread Joey’s post, I would end up ruminating on how to pull off this ridiculous experiment. Bit by bit I acceded to the outrageous requirements. I swapped cars with a friend, borrowed camping gear, bought new clothes. The only things that I brought with me of my own were my credit cards and cell phone (in Ziploc bags) and my mother’s necklace (because I wore it all the time and simply forgot about it). I bought a wireless keyboard to use with my phone so that I could write, and a solar panel and marine battery so I’d have power. Of course, any of those things could be contaminated—how the hell would I know?—but I gave it my best shot.
I gathered items from various friends, bringing them like talismans: a wool sweater from George, a camp chair from Bruce. I borrowed a tent from Geoff—though he’d left Santa Fe long ago, he still had a storage locker there filled with forlorn, abandoned stuff left over from our marriage. If my friends thought I was crazy, they were polite enough not to say so. In gathering my supplies, I chose friends whose houses didn’t seem moldy, and in any case, I figured, it was far less likely that their stuff was contaminated with “ick.” The great bulk of the stuff came from William’s brother Gary, who lived in Santa Fe. It had been seven months since William and I had split up, but Gary and I were still friendly. He swapped cars with me, lent me most of the camping stuff, let me use his house as a staging area, and was gracious enough not to sneer at the embarrassing lengths I went to not to contaminate my new gear, such as washing my hair and Frances with vinegar and putting on new clothes before handling any of it.
Gary even helped me with things I couldn’t easily do myself. For example, the boxes for the items I had ordered online had been in my trailers and car, and hence were (presumably) contaminated. I couldn’t figure out how to deal with this, because if I unpacked the boxes in my contaminated clothes, I might contaminate my new stuff, but if I showered and got into uncontaminated clothes, then handling the contaminated boxes could mess up my few uncontaminated clothes. So Gary did it for me, taking the stuff out, disposing of the boxes, and storing the stuff for me in his (hopefully) uncontaminated garage. As I watched Gary unpack boxes, my breath caught as the profile of his nose reminded me so much of William. But William had never managed such easy, unmetered helpfulness.
I spent weeks preparing for the trip whenever I was capable, and at each day’s end, I would lie in bed, barely able to move. Talking to a friend on the phone one night, I heard a hysterical edge creep into my laughter. Ha ha ha, I can’t lift my head, I’m going to arrange for all new equipment and go to the desert for two weeks by myself, ha ha ha ha ha ha! I assured myself that my state varied so much that surely I’d have a moment when I could stagger to my car and get back to civilization if I really had to.
And anyway, absurd or no, I felt carried along by some unstoppable tide. I was doing it.
I had to decide where to go. People on the group often discussed Death Valley, since it is particularly pristine. But I had spent time there with William, and I wanted to avoid those memories.
Most other deserts weren’t warm enough in February for comfort. Southern New Mexico was 10 degrees colder than Death Valley. I considered the Mojave, but it wasn’t clear whether I’d be able to camp at low elevation there, and higher elevations would be cold.
Anza Borrego near San Diego appealed to me—it held no baggage for me, was likely to be warm, was beautiful, and allowed backcountry camping. There were no direct reports on Anza Borrego from any moldies, but I figured it must be okay, being a desert and all.
Remarkably, one of the moldies volunteered to drive there herself to check it out for me. I appreciated that but also found it a bit creepy—why was a stranger going to so much trouble for me?
Her report wasn’t good: The prevailing winds blow crap from San Diego into Anza Borrego, she said, so the air there wasn’t very good after all. That seemed to leave me with no choice. More outrageous demands! I thought. But I acceded to that too, and I resigned myself to Death Valley.
In a poetic way, going to Death Valley felt so appropriate as to be inevitable. I felt as though I were going to the desert to die. Not literally—I fully expected to be breathing at the end of the trip. But it felt like the end of the road, a giving-up, a surrender. All the external structures of my life had fallen away: My relationship with William had ended; I’d moved away from Berkeley, where I’d spent five years building a life and community; my Science News math column had ended; I was too sick to work much anyway. I’d worked so hard to keep everything together in spite of the illness for years, but I knew I couldn’t keep it together anymore.
As I stru
ggled with the decision about whether to go or not, pondered whether the moldies were crazy or sane, wondered how much I could trust them, and got the willies at how far I was straying from science, I also felt inexorably drawn to the desert. All that thinking almost seemed like it was just a way of keeping my brain busy with its imagined control and decision making while I was being carried along by greater forces than my mind could comprehend.
PART 3
IN THE WOMB OF THE EARTH
CHAPTER 12
DEATH VALLEY
I cracked an eye open and oriented myself. I was in Death Valley, in a tent, on a camping pad, in a sleeping bag, with Frances curled up next to me. I’ve made it.
Then it came flooding back: The wind. Geoff’s tent that was so manly that testicles seemed to be required to erect it. The wrestling match. The physical limits I so totally blew past.
Can I move? I stretched my fingers, rolled my shoulders, and finally bent my legs. Everything moved. I was creaky and achy, but okay.
Maybe the experiment is succeeding already!
I scootched to the door of the tent, let Frances zoom out to explore her new surroundings, and looked out, still tucked cozily in my sleeping bag. The sun labored to crest the Amargosa Mountains, and light beams glowed as they shot above my head in an angelic fan, their endpoints reaching lower as the day slowly brightened. They finally fell upon me like a sacrament.
I moved to my chair up by the car for the full grand view, each step painful and slow, but manageable. Frances sat like a sentry nearby, and I breathed deeply. I made it!
The wind had died down overnight, and the silence felt thick, enveloping me. I couldn’t hear a single sound coming from a human. That great, empty expanse thrilled me, opening an answering space within. I felt no need to do anything. Just sitting, feeling the cool desert air, looking across that astonishing, bare valley, was plenty.
Through the Shadowlands Page 16
