Through the Shadowlands

by Julie Rehmeyer

  But what then, I asked, was the equivalent of the allergen for me? In this analogy, there had to be something—mold or some other compound—that set off my neurological response in the first place. Only then could that reaction be transferred to the almond extract alone. And for that matter, what was the equivalent of the almond extract’s scent? In my washcloth experiment, neither I nor my non-moldie friend could smell the mold or detect any other difference between the washcloths, other than that some crippled me and some didn’t.Ch20-6

  “Fair enough,” Miller said—but then he kept raising that possibility. He called conditioned immunity “the mirror of the placebo effect,” in other words, the nocebo effect. He was considering, in more polite language and more specific form, whether my reaction was all in my head.

  Then he jumped, saying, “From my perspective, it can seem like more of a mystery than it really is.” The problem wasn’t the science, he said. It was the politics, particularly the Mold Wars and the ACOEM statement. “Because there was such aggressive marketing on both sides—one side saying mold is doing everything, the other saying mold is doing nothing—it really was difficult to find the center of opinion,” he said. But by now, it had all come clear. He’d even just published a series of papers for AAAAI, superceding its earlier, flawed statement, describing the respiratory risks from mold. The science was pretty well settled.

  Even though it didn’t explain people like me.

  When I got off the phone, I felt like a refugee, my citizenship in the land of science having been unceremoniously revoked. I felt like I was as trapped as the snake eating its tail: The way to reclaim my citizenship was to agree to the perspective that Miller had presented with such genial authority. But Miller’s claim was that the science was clear—even though it couldn’t explain experiences like mine, which he acknowledged occur regularly. So accepting that thrust me and my kind back into exile.

  But why, I wondered, didn’t he seem to care about folks like me? He seemed like an open-minded, engaged, thoughtful, caring guy. Plus, the problem might well go way beyond a few freakish people like me. Around the world, mold problems occur in 20 to 50 percent of buildings, including schools. Given the huge number of people exposed, especially children, it was imaginable that many people were being affected in lower-level ways. The study that showed a 10-point IQ reduction in Polish children who lived in moldy houses strongly suggested this. Miller was a public health guy. This was potentially a huge public health problem. What gave?

  Thinking back on his comments about the Mold Wars and the ACOEM statement, I felt like I had a clue. I imagined him as a young researcher, steadily accumulating solid scientific evidence to prove the respiratory dangers of mold—only to be ignored in the legal clashes, with unscientific claims made on both sides and his own careful evidence getting disregarded. In his shoes, I might want to scream, “Ignore those crazy insurance people! Ignore those crazy neurological people! Listen to me! I’m the one with the science!”

  Miller and his researcher comrades had finally won the war against the crazy insurance people. But I could imagine it being very hard to then open the door to the crazy neurological people in order to see how science could be used to investigate their claims. Much safer to keep the focus on the core issues, the ones where we already had solid results, the ones that seemed to affect vastly greater numbers of people. Especially when the mechanism for neurological problems was unclear, and when it was so easy to imagine that they were just a nocebo effect.

  Plus, from Miller’s point of view, he’d succeeded. He’d established that mold in buildings was a human health threat and that mold levels needed to be as low as possible. He was done.

  I, however, didn’t have the luxury of dismissing crazy neurological people like me. So I contemplated what to conclude about what was going on in my own body.

  As much as Miller’s lack of interest in neurological issues frustrated me, I also agreed with him that whatever was debilitating me in water-damaged buildings, it was unlikely to be an ordinary toxic effect from a mycotoxin alone. I reacted too quickly and recovered too quickly. If toxins were damaging my cells, I couldn’t imagine how the cells could immediately undamage themselves during a shower.

  The other problem was that I reacted to such unbelievably tiny quantities. How much mycotoxin could possibly be reaching my body from the sheets of a bed on which a backpack had been set for a couple of minutes, hours earlier? Doctors who treated mold patients universally reported such hypersensitivity, and certainly it was true of all my moldie friends. But that didn’t provide a mechanistic explanation.

  The only medical condition I knew of that involved that degree of reactivity, other than extreme allergies, was multiple chemical sensitivities,Ch20-7 so I researched the current understanding of its mechanism. Not surprisingly, nobody knew, but the hypothesis that seemed most relevant to me was called “kindling”: Neurons that are given a strong or repetitive electrical or chemical stimulus can become trigger-happy, requiring only a tiny spark of stimulation to kindle an enormous fire of a response. That phenomenon was thought to play a role in epilepsy and alcohol withdrawal as well as, perhaps, chemical sensitivities. That fit with my idea that my neurons were pathologically firing in a way that paralyzed my legs.

  It was an intriguing idea, but for cases like mine, kindling was no more than an unstudied hypothesis.

  So ultimately, after all my research, I still had little idea what was going on inside my body when I reacted to mold. My theories about my reactions were all only possibilities. To really know would take serious research—which would take serious money.

  The science did show, however, that moldy buildings were probably harming people in many different ways and that we’d only just begun to scratch the surface of understanding mold’s impact on human health.

  I felt even more discouraged about the prospects for scientific progress on non-respiratory effects of mold than I did about ME/CFS. ME/CFS was at least an official illness, with a cadre of determined researchers trying to understand it scientifically. They were facing quite a battle given the very limited research funding, but still, they’d accumulated lots of evidence that ME/CFS caused physiological abnormalities, which was an important first step. For non-respiratory effects of mold, the research budget was pretty much nothing. With no money, even the most committed researchers couldn’t do their work. And, of course, almost none of the researchers on mold were committed to understanding neurological effects anyway.

  So, I felt as though I was taking one more step away from the naïve assumption that, given time, science would save me. At this rate, the universe would come to an end first.

  Still, it hardly made me abandon science. I held on to the knowledge that my illness could and should be understood scientifically. I continued to use my scientific skills and mindset to try to understand and treat it. And most of all, I continued to claim my citizenship in the land of science.

  * * *

  Ch20-1 Somehow, the notion of molecules traveling along a nerve sounded immensely implausible to me—I was convinced that only electrical signals could travel along nerves. I checked references Ammann gave me, and indeed, this is an established fact. This is one of the ways that air pollution may increase dementia risk. And pharmaceutical companies are eyeing this pathway as a route to deliver drugs. Intranasal insulin, for example, may provide a treatment for Alzheimer’s disease, since insulin levels in the brains of Alzheimer’s patients are thought to be low. Using the olfactory nerve to deliver the drug would, potentially, raise insulin levels in the brain without affecting the rest of the body.

  Ch20-2 I did have some fairly mild cognitive effects that were lasting. Interviewing sources on the phone for more than about 45 minutes often left me feeling concussed, and it took hours to get functional again. I took some solace in learning that over months, the monkeys’ neurons regenerated.

  Ch20-3 I worked really hard to sort out this controversy, asking Miller for references so ma
ny times that I strained his patience. He never gave an argument that long-term exposure to mycotoxins in moldy buildings couldn’t plausibly have neurological effects, at least not one that I could understand even with great effort.

  Instead, he made a blanket claim that 25 years of good epidemiology had proven his claims; he asserted that he didn’t make things up; he sent me a dozen highly technical papers at once with no explanation of how they addressed my questions (I read them all, and so far as I could tell, they didn’t); and he argued that the health effects could be satisfactorily explained without a significant role for mycotoxins (though, when pushed, he acknowledged this applied to respiratory effects only, not neurological ones).

  In particular, he never addressed the three studies that, it seemed to me, made such effects plausible:

  1. Reponen’s study showing the vastly greater levels of mycotoxins in dust and mold fragments than in intact spores.

  2. The greater toxicity of airborne mycotoxins, compared to ingested ones.

  3. The complete lack of studies of long-term, low-dose effects.

  I also found it odd that, according to him, carrying moldy boxes could make you so sick that you would land in the hospital—but no lower dosage, even over a long time, could have any significant effect. Again, I couldn’t get a response from him about this.

  Ch20-4 Miller reserved the term “mycotoxin” for the toxins that occur in agricultural settings, and he described the toxins molds emit in indoor air as “low molecular-weight compounds.” I chose not to follow his convention because as far as I could tell, it was idiosyncratic to him. Furthermore, it seemed to me that the term “low molecular-weight compounds” failed to capture the essence of what we were talking about, since many small compounds aren’t emitted by molds and don’t poison people. “Mycotoxin,” on the other hand, literally means “mold toxin,” which seemed quite appropriate.

  Ch20-5 I later heard this same story from several indoor air-quality researchers. One reported it with incredulity (“I wouldn’t say she needs a psychiatrist,” he said, “but she needs something that isn’t medical”) and another with a kind of wondering sympathy. Miller told the story in a neutral tone.

  Ch20-6 Later, I experimented a bit in an attempt to use the phenomenon of conditioning in my favor. I put lavender from our garden in my sauna, to build an association in my brain between the smell and the physiological processes I underwent in the sauna. I carried lavender with me, and at times I was feeling lousy but couldn’t use my sauna, I’d sniff the lavender. Plus, some evidence suggested lavender on its own had a calming effect. I found it quite pleasant and possibly helpful, though I couldn’t know what the mechanism was.

  Ch20-7 The foremost researcher on multiple chemical sensitivities was Claudia Miller (no relation to David), and she had introduced a new term for the illness, toxicant-induced loss of tolerance (TILT), which she argues is more precise and accurate. Since my discussion of it here is so brief, I’ve stuck with the more familiar term.

  CHAPTER 21

  TIMMY THE WOOD ELF

  One day a couple of months after we got back from Tasmania, John excitedly told me that he’d been shuffling through tunes on his iPod and had come upon a recording of a session he’d had with a psychic a year before. He wanted me to hear the recording.

  A psychic? I thought. Really?

  Few things aroused my skepticism more than the idea of a psychic. Not long before my mother died, she went to see one, on a friend’s insistent recommendation. The psychic told her she would get married and go live in a Mediterranean country—a vision that fit well with her fantasies, but not, as it turned out, with reality. My mother’s experience fit with my expectations: I had always figured that either psychics said things that were so general that they could apply to anyone in any situation, or they were observant and attuned what they said to people’s images or fantasies. Some might be well intentioned but self-deceiving, I figured, but most were probably just con artists.

  John’s comment about the psychic hit on one of my few anxieties about our relationship: He was not particularly science-minded, or even inclined toward careful, rational analysis. When he drove down from Boulder to see me for the first time, he called me from the New Mexico border and said he’d be there in an hour, when the drive ordinarily takes two—a case of wishful thinking he was quite prone to. He enthusiastically took a homeopathic cold treatment that I figured had to be nothing more than a placebo whose primary efficacy lay in its fancy-sounding name, Oscillococcinum. He described a form of alternative medicine linking symptoms to organs and thence to emotions as though it were plausible. And he certainly wasn’t the kind of person I could ever talk math with.

  A small voice in my head said that perhaps that was why he was so willing to accept all my strange moldie rituals. Maybe he’s just not savvy enough to recognize how ridiculous I’m being. I immediately rejected that—Hey! It’s working! Nothing branded “scientific” has. Give him and yourself a break.

  I also recognized that in some way, I liked his nonscientific orientation. More primary for him than careful, rational, scientific analysis were intuition and feeling. His strengths lay in his acute understanding of human nature, his awareness of his own psychological underpinnings, and a kind of attunement to the underlying patterns of the world that fit in very much with my own. When I described my childhood experiences with my mother and my own intuitive, mystical orientation to him, I didn’t feel sheepish, as I so often did. He seemed to know just what I was talking about when I described my time in Death Valley and how I felt hollowed out, like I didn’t really matter anymore, even to myself. He quoted his Sufi teacher: “It’s not about finding yourself. It’s about losing yourself.”

  At the same time, my scientific side felt just as central to me. I felt enormous power in holding both these perspectives at once, rubbing them against each other while betraying neither, withstanding the tensions between them. Science without mysticism struck me as narrow and misleading, but mysticism without science could veer off into insanity, as it sometimes did in my mother.

  I reminded myself that John was very different from my mother. And if my science-writer friends might sneer at some of the things he said? Well, fuck ’em.

  But now he was talking about a psychic.

  As he described the recording, he reminded me of a little boy who wanted to show me the lizard he’d caught. His face was alight, and he was nearly bouncing. I couldn’t help but smile. “Sure, I’ll listen,” I said.

  And I was pretty curious. Despite my discomfort, I figured that if John was so excited about this, it had to be interesting.

  That evening, we snuggled on the couch together and he gave me the context for his session: He had gone to see the psychic, Timmy Wood, a few months before he met me, primarily because he wanted advice about a recent breakup that he had belatedly regretted. During his first visit, Timmy had been encouraging about his prospects for a reunion. But since then, John had been feeling ever more disheartened. He went again, looking for a fill-up on hope, and it was the recording of this second session that had come up on his iPod.

  John pressed play, and a deep voice spoke: “Let’s invite in your guides. Let’s ask for the highest, clearest messages. I’m going to channel your higher self. Do I have your permission?” John agreed. “We give thanks for the messages for the good of yourself and others. Amen.”

  Then the voice shifted and became artificially high-pitched and staccato, as if a lumberjack in ballet shoes were dictating to voice recognition software. Timmy began a high-speed riff: “As we look into your soul vibration we want to remind you and be perfectly clear that you have a lot of red in your soul, you have a lot of yellow in your soul.” Oh, god, I thought. Soul vibration, yeah right.

  But as he continued on, he painted a portrait of John that I recognized. John’s “yellow vibration” was his optimistic outlook, his sunniness, his enjoyment of life and its physical pleasures. His “red vibration” was his sexuali
ty and sensuality—which I was happy to attest to.

  Timmy described the importance of John’s soft, feminine side, one of the things that had drawn me to him in the first place. He encouraged John to trust that aspect of himself more. He told him it was time for him to do the work that he loves (advice John hadn’t yet taken—he was writing technical manuals for a living, but longed to do his own creative writing and to help people write books).

  Then Timmy said something that really caught my attention: John was going to meet someone wonderful in June and have lots of great sex, a prediction that happily had turned out to be precisely true.

  Timmy hadn’t seemed to take a breath for several minutes during that barrage of words. “First question?” he asked, finally inhaling.

  John edged toward the real issue, starting with less intense questions about work. Then finally he came out with it: He wanted advice about his old girlfriend, Karla.

  “That’s still stuck in you. Let’s clear that up and release that and move on,” Timmy declared briskly. “Go out and meet some ladies.”

  John didn’t want to hear that. “If I date other women, does it have a bad effect on the friendship I have with my last partner and the potential that’s there for that to become more?”

  “Why do you think there’s potential to develop more with her?”

  “After I broke up with her, I realized how strongly I cared about her.”

  Timmy’s voice grew sharper. “Yes, but what are you currently doing about that?”

  “Being friends,” John said in a puppy-dog tone.

  Timmy was having none of it, and John’s voice rose into a slight whine: “This is something we talked about a lot last time, but it was different. You said there was still hope.”

  “Well, it’s changed,” Timmy pronounced. “It’s time to release her and move on. That’s what we’re picking up now.”

  Hearing this, I laughed, my head bouncing against John’s chest where it was snuggled. Timmy kept trying to lure him toward interest in moving forward—Great sex ahead! Wonderful new partner! This summer! All you have to do is release the past!—but John kept turning back to Karla.