So that left the question of these supposed chemical sensitivities. I was skeptical, never having had the slightest hint of chemical sensitivities in my life. Plenty of chemical smells were unpleasant to me, but aren’t they to everyone? It was easy to imagine someone letting their imagination run away with them, focusing on that dislike so much they started feeling ill. And anyway, I had no intention of accepting that I had chemical sensitivities without even testing it. Now was my chance!
So I smeared the blessed stuff over all my exposed skin, and instantly, the midges vanished. Ah . . . Still, I couldn’t deny that a mild anxiety prickled at me as I waited to see if the spray would make me sick.
An hour later, I felt completely fine.
I found it rather gratifying. People’s worries about toxicity often struck me as unscientific and ridiculous, driven by an emotional longing for purity rather than logical thought. People had pushed so many stupid ideas on me over the years: The problem was electromagnetic fields! I was irresponsible to use Wi-Fi, and I should be turning off the power in my house every night! It was my microwave! Sometimes I ate nonorganic produce! I used Roundup on the poison ivy on my land a couple times! All those niggling insistences made me want to dive into the damn bug spray, feel just fine afterward, and tell everyone to go screw themselves.
On the other hand, I was quite hoping there was something to this one little corner of the toxicity hypothesis that would hold true, about mold. Does my lack of reaction to the bug spray indicate I might not be a moldie after all?
I heard from Erik that the next day would be a “horrifying day for a mold tour.” Mold releases more mycotoxins when the weather is bad, Erik claimed, particularly when a storm is first coming in and the barometric pressure is dropping. But he suggested that whenever I arrived, we should get together and talk. I was arriving on a Wednesday. How is this guy so flexible with his schedule? Does he have a job?
I asked him for advice on a mold-free hotel in Reno, but he said he didn’t know. That also seemed odd to me. So I chose a hotel randomly, having no way to distinguish a good one from a bad one.
When I walked into the hotel room and closed the door on the wind, any worries about that wafted away: Being indoors felt miraculous. I took my first full shower in two weeks, and the endless outpouring of hot water amazed me. While camping, I’d used my solar shower to wash my body, but it had been too difficult to wash my very long, thick hair. I’d kept my hair braided constantly to protect it from the wind, and it had gotten so thick with accumulated dirt that it had practically rebraided itself each morning. When I stepped out of the shower, my hair sleeking down my back like a seal, I felt reborn.
I also used the shower to wash all my clothes, which were as stiff with dirt as my hair had been, and then I draped them up to dry. It didn’t even occur to me that I was risking contaminating my clothes in the process if the room was moldy.
I couldn’t get a solid commitment from Erik about when he was coming. I could only reach him by Facebook messaging—his e-mail inbox had gotten full years ago, he said, and he didn’t have a telephone—and now he wasn’t responding. So I waited around in the hotel room, hoping he’d show up soon, getting increasingly hungry but not wanting to go get food in case I missed him.
Just as my hunger was growing miserable, Erik showed up. He was in his late fifties, with a disheveled mop of curly gray hair and a diffident manner, riding a bicycle with a homemade trailer rigged behind it. We said hello, rather awkwardly, as he locked his bike outside my hotel room.
I asked him if he’d eaten lunch and he said he hadn’t, though he didn’t seem to care much about eating. Since I certainly did care about eating, we went to my car to drive to a restaurant.
I asked him to check out my stuff in the car for mold. I kind of figured he’d declare everything “horrifically bad”—one of his favorite phrases—and thus condemn my whole experiment. That would certainly preserve his theory, given that I hadn’t, so far, gotten much better. Yeah, yeah, I thought to myself. I know that’s not supposed to mean anything, and it all depends on what happens on the mold tour. But still.
He sniffed around in my trunk. “Seems okay,” he said casually.
Wow, so this experiment is still on!
Erik only knew one place to suggest for lunch—he never ate out, he said—and it turned out to be out of business, so we went back to the restaurant attached to the hotel. A funny look passed over his face as we walked in. “You okay?” I asked. He said no, that he was feeling a hit of mold. I suggested we go someplace else, but he declined. Okay . . . When we sat down, though, he said the space felt acceptable to him.
I asked Erik about when he’d first gotten sick, and those turned out to be nearly the last words from my mouth for an hour and a half.
It all started, Erik said, with an algal bloom on Lake Tahoe in the winter of 1984. Large portions of the water and the sand on the shorefront were covered with a dull-green, wispy algae. That had been happening more and more, but that winter, Erik noticed something stranger: In places, the sand was neon green, “Halloween-corpse green,” as if it might glow in the dark. Millions of crawdads, he said, washed up dead on the lakeshore. The prevailing winds blew across the lake, and he was convinced they were picking up toxins from the algae and this neon-green stuff and spreading them through the north shore of Lake Tahoe.
His second clue was that although he had been susceptible to mold since he was a little kid—Truckee High School had been especially bad—suddenly, every building that had ever bothered him felt vastly worse. And it wasn’t just him, he said. Other people, people who had no idea they could be susceptible to mold, were being sickened in the same spots he was.
Then a particularly nasty flu passed through town, “the China flu,” Erik called it. Some people who caught it never recovered. Their faces and lips went numb. Their eyelids sometimes drooped uncontrollably, and in order to see, they had to hold them open. Patients’ legs or arms grew suddenly weak. They reported feeling as though an electric current was rolling through their skin. They would try to reach for something and find that their arms wouldn’t move unless they concentrated so hard that they broke out in a sweat. They couldn’t coordinate their muscles well enough to guide a spoon to their mouths. If they lay down, their heads spun with wild vertigo, but if they stood or even sat up, they passed out.
Then Erik caught it. He was so ill he had to slide to the bathroom on his belly. His brother spoon-fed him. When he tried to speak, sometimes what came out was incomprehensible, as if he were speaking in tongues, and others’ words sounded like gibberish to him.
All of this was similar to what other victims were experiencing, but he noticed something else too: His vulnerability to mold skyrocketed, even beyond its already heightened level. An exposure could leave him feeling that he was fighting for his life. His house had a couple of spots of mold, and he felt so much better outside that he ended up living in the camper of his truck. He recovered enough to go out some, and he found that particular spots reliably did him in—a sewer grate outside the 7-Eleven where his girlfriend worked was especially bad. And if he took others who had gotten the China flu to the spots that felt worst to him, they fell apart too. Furthermore, the areas that felt worst to Erik also tended to get clusters of people sick with the mystery illness.
Erik became convinced that mold was combining with other toxins and weakening people’s nervous and immune systems. He knew that molds go to war with one another, producing poisons to try to kill one another off. The United States once accused the Soviet Union of attacking Hmong tribesmen in Laos and Cambodia with one of these poisons, and Iraqis under Saddam Hussein filled warheads with another. Erik went a step further, reasoning that if molds are exposed to other chemicals, it might make the poisons they spray about worse than usual. Perhaps that neon-green stuff by the water had somehow activated the mold, making it far more dangerous.
Erik had turned for help to Dr. Paul Cheney, who, with his partner Dr. Dan
Peterson, diligently probed the mystery illness. They didn’t have any effective treatments to offer, but they collected so much data on the illness’s odd effects that they convinced the Centers for Disease Control and Prevention to come investigate. At one point, Cheney called Erik in and asked him to be a “prototype” for the syndrome—that is, a model patient that the description of the syndrome would be based on.
Erik recounted that he’d said no, and Cheney had said, “You have to.” Erik had responded, “What do you mean ‘I have to’? Of course I don’t have to.” And Cheney had said, “Yes, you have to.” Erik repeated Cheney’s insistence and his own refusal so many times that I was tempted to join in as a call-and-response: “You have to!” NO! “You have to!” NO!
Eventually, Erik continued, Cheney explained that Erik was the only patient who had all the characteristic problems with the immune system but was negative for the Epstein-Barr virus. If Erik served as a prototype, the theory that the mystery illness was caused by a chronic infection with Epstein-Barr would be discarded. I anticipated Erik’s response and again wanted to join in on the chorus: NO!
Finally, Cheney said that as a prototype, researchers would listen to him.
Those were the magic words: Erik agreed. If he was a prototype, they’d have to investigate the role of mold and toxins in the illness, Erik figured. He’d tell them about his experiences, and they’d unravel the whole illness.
But no researcher had ever come to talk to him, Erik reported bitterly.
With no treatments available, Erik focused on avoiding mold, and he got somewhat better. But in 1994, his house became moldy and he again got desperately ill. He went to see Dr. Peterson—Cheney had by then moved to North Carolina—who approved him for a clinical trial of the drug Ampligen, which was only available to the sickest patients. “This can save your life,” Peterson said. The catch was that patients had to pay for it, and it cost $60,000 a year, Erik said. The company was funding a trial for patients who were bedridden, but because of Erik’s mold avoidance efforts, he was able to get out of bed occasionally and therefore didn’t qualify.
Erik couldn’t afford it, and he was in despair. He decided to shoot himself. First, though, he went on a farewell camping trip in the desert with his family.
And in the desert, he felt better. Much better.
As he tried to make sense of his improvement, he remembered an experience he’d had in the army. His captain was disciplining him, yelling in his face, and Erik was doing the “Yes sir, no sir, no excuse sir” routine. Suddenly, the captain collapsed, and his lackey ran over and asked Erik, “What did you have for lunch?” Erik was totally confused—the captain seemed to be having a heart attack, and this guy wanted to know what he had for lunch? But Erik stammered out that he’d had a peanut butter sandwich. It turned out that the captain had a severe peanut allergy.
After the captain had recovered, Erik said, he didn’t discipline Erik further, and he begged Erik not to let his secret out, lest the other soldiers realize the power they had over him. Erik said he kept his mouth shut—and he escaped punishment for whatever infraction had gotten him in trouble in the first place.
This experience made him wonder if in a similar way, his sensitivity to mold had increased so much that minuscule quantities were now enough to make him sick.
So he went extreme. He treated mold like tear gas, using the methods he’d learned in the army. The lessons from the army about cross-contamination were indelible: He still remembered how soldiers occasionally got lazy and stored their unwashed field jackets in their lockers after a very slight exposure to tear gas. Later, he saw them running back to the showers because their pants, which had merely touched their jackets in the locker, had started burning them.
Erik pursued his theory by spending time in the desert with all new belongings to completely escape toxic mold. He felt better, but then he found that when he returned to civilization, places that had bothered him before felt even worse.
So he taught himself to recognize early signs of mold exposure, paying minute attention to how his body felt. He’d get mild heart palpitations, he said, or his skin would burn, or he’d suddenly feel depressed. If he recognized the exposure quickly and then took a shower and changed his clothes, washing the clothes before the contamination could spread, he could avoid the worst symptoms.
He figured out that his house was a problem, and after attempts to remediate it were insufficient, he sold it and bought an RV. Over time, though, his RV grew moldy too. He replaced it with another, then another. Finally, he built his own from the ground up, using only metal and foam. Even that eventually gave him problems, he said, which he ended up tracing to the cardboard hidden inside the construction of his refrigerator. He tore that out, and since then, it had felt good to him.
He recovered enormously—enough that he’d climbed Mount Whitney, the highest mountain in the continental United States, each year for the previous decade.
But recovery for himself didn’t satisfy him. To him, his recovery only proved that his theory was right, and he was still furious that those researchers had never materialized to talk with him. He desperately wanted some doctor or researcher to work on it with him.
His efforts to persuade them, however, were less than successful. He alienated Peterson even before he figured out how to successfully avoid mold by throwing a temper tantrum in Peterson’s office. He showed up for an appointment and the receptionist said it had been canceled because Peterson was at a conference. Erik was furious at the lack of notification. He screamed so loudly that Peterson himself came out to investigate, and Erik saw that he was treating another patient, not at a conference after all.
“They were all liars!” Erik yelled in the restaurant. He reported that he’d chewed Peterson out too. Then he’d said to him, “I just need to know: Are you going to help me figure out this mold thing or not?” And Peterson said no.
“Can you believe that?” he asked me. I gave a vague grunt. Hmm, somehow, yes, I think I can believe that . . .
Even after that, Erik wouldn’t leave Peterson alone. He kept dropping notes off with the receptionist, reporting on his experiments and experiences. Eventually, Erik said, Peterson told his patients not to talk to Erik. Erik fulminated on the outrageousness of this, the utter lack of integrity. “It’s a clue!” Erik’s eyes threatened to pop from his skull. “They should be following up on clues!”
Erik certainly wasn’t going to stop just because he couldn’t get Peterson interested. He told me about going to conferences and “stalking” the researchers, cornering them to get them to talk to him. None of them would listen. “Can you believe it?” he exclaimed, over and over.
If I weren’t so goddamn desperate, I wouldn’t be listening to you either, I thought. I imagined my science-writer friends eavesdropping on the conversation and being astonished that I would pay attention to a madman like this. Internally, I retorted, Hey! I’m just being a journalist! It’s not like I actually believe the crap this guy is spewing!
But I couldn’t deny that when I was sitting in my camp chair in Death Valley, fantasizing about living in a Vanagon in the desert with Frances, I’d felt a sense of not just hope but calling, as if the future were reaching back and pulling me into it. Remembering that, I felt moronic. Maybe my desperation has rotted my brain, I thought. My mouth tasted acrid, and I reached for my water glass.
Erik prattled on. Years ago, he said, he’d been most interested in what was going on with mold and ME/CFS. But at this point, he reported, his voice rising, he thought the far more interesting story was about how all these researchers wouldn’t listen to him. I closed my eyes to make their rolling invisible to him.
After lunch, Erik said we should go to a nearby Whole Foods, which had a history of feeling moldy to him. It wasn’t as bad as the places he’d take me the next day, he said, when the weather would be better, but still, I might experience the effect.
As we left the restaurant, Erik finally paused his diatr
ibe to ask his first question of me: “So who are you? Are you a journalist, a researcher, or what?”
I almost laughed: He’d been talking to me for an hour and a half and hadn’t even bothered to ask who I was? We’d never really talked before. I explained that I was a journalist, but at the moment, I was just a patient trying to get better. Any writing about it was a question for another day.
When we got into the car, Erik asked me why I thought all these researchers wouldn’t listen to him. I said, mildly, “Well, I think presentation really matters with these things.” Erik responded that early on, he’d been very mild-mannered, and he’d only gotten more strident when that hadn’t worked. “And you know,” he said, “the more strident I got, it seemed like the less they listened!” I almost laughed, but I also felt sad for him, devoting such energy to his cause with so little reward. Why can’t he recognize that his strategy is backfiring?
When we pulled into Whole Foods, Erik paused to warn me, “If you haven’t been hypervigilant, then you may not feel anything on an exposure.”
I wanted to strangle the bastard. The whole point of this exercise was to maximize the chances that I would react. How the hell was I supposed to be hypervigilant if I didn’t know what to be vigilant for? And hadn’t I just spent two weeks in Death Valley to make sure I wasn’t getting exposed, so that I’d be able to feel something? Yet again, the whole theory seemed to be unfalsifiable.
“So I can only find out what I need to be aware of if I’m already hyperaware of it?” I asked.
“Yep!” Erik nodded. “This is a hell of a paradigm.”
Then he had me look at the veins in my hands: When I got exposed, he said, they’d be more prominent, so I should remember how they looked beforehand.
We walked around the store, and I felt astonished by the bright lights, the endless aisles of food, the well-dressed people. At home, I often shopped at a Whole Foods not so different from this one, but now, it felt like a different planet from the rocks and sand of Death Valley where I now felt like I belonged.
Through the Shadowlands Page 18
