Suddenly Erik stopped, his eyes focusing into the mid-distance. “Oh yeah, I feel it. It’s heeeeeere!”
Am I in a poltergeist movie? I resisted an urge to snicker. But, okay, I haven’t come this far to give this stupid theory anything less than a full shot. So I paid close attention to my body: Could I feel anything different? Was that a constriction in my heart? Perhaps a slight pain, maybe the needle-in-the-heart feeling I’d heard my online moldie friends describe? Could be, I thought, but then again, it could be a random sensation I would never even have noticed if I weren’t paying such close attention.
Erik had me check the veins in my hands again, but I wasn’t sure whether there was a difference.
After we left the Whole Foods, he pulled down his sock and noted the indentation from it, and sagely said that this was a sign of exposure. He had me push my sock down: I had an indentation too! I pointed out that I would expect that, exposure or no, and he said that he might have thought that as well, but when he’d gotten clear in the desert, that didn’t happen. “But I was just in the desert for two weeks!” I cried. He didn’t have much to say.
We got in the car, and I felt like I could sob. This is exactly as ridiculous as it all sounds. What the hell am I going to do now?
Erik broke in: I shouldn’t give up hope, he said. Every ME/CFS patient he’d taken to Truckee High School, where we were going the next day, had reacted.
He then carried on about all the reasons I might not have detected the mold even if mold was indeed sickening me. “You’ve just got to give the theory a chance!” he said.
At this point, my irritation overwhelmed me. “Look, Erik,” I said. “I am here specifically to give your theory a chance—I’ve just spent a bunch of money, spent two weeks in the desert, and have now driven up to Reno, all for the express purpose of proving you right. Now it just has to work.”
He blinked. “Thank you,” he said. And then he carried on some more.
Before he pedaled away on his bicycle, Erik instructed me to pick him up on a street corner the next morning for our Truckee High School expedition. I was so annoyed with him I felt like I was going to jump out of my skin. I spent hours working to calm down, pacing around my hotel room. What an idiot! What a fucking waste of time!
I recognized that my anger was coming largely from disappointment—and shame. I knew that I could tell my science-writer friends that it had all been a lark, that I’d never really believed in the theory, but I also knew that wasn’t quite true. My fantasies of living with Frances in a Vanagon in the desert taunted me.
Finally, it was late enough that I could go to bed. Erik told me I should be sure to shower before bed, but I didn’t. It was pretty clear to me at this point that mold wasn’t my problem. And anyway, I wasn’t trying to avoid a reaction; I was trying to create it.
I woke up in the middle of the night needing to pee. I felt awful. When I got up, I found that not only could I barely walk, I couldn’t even stand up straight. I hadn’t had trouble walking since I’d left Santa Fe.
Oh my god! It might be true! I might be a moldie!
I staggered to the toilet, my excitement battling against a feeling of nauseating, aching, swollen illness. I feel so, so awful. This is amazing!
I felt the wall of skepticism within me crumbling, a wall I’d erected to protect myself against my desire that this ridiculous theory be true for me. And through the cracks in the wall, relief began flooding in: After so many years of nothing working, maybe this was the answer. I lurched back to bed and fired off e-mails to a bunch of my friends who had been following my saga: “Woohoo! I’m having trouble walking!”
As I lay in bed, too worked up to go back to sleep, I tried to put my scientist hat back on. This was just one data point, hardly conclusive proof that mold was my problem. Intriguing, but nothing more. I had to make sure I didn’t get carried away and let myself be misled by my own hopes. Was I just setting myself up for all the bitter feelings I’d had after we’d left Whole Foods and it hadn’t seemed to affect me—but worse?
After a while, I took a shower, and I was amazed to find that I felt much better afterward, walking fairly normally. Showers had never made a whit of difference in the past. And when I woke up in the morning, I felt quite okay. Astonishing!
As Erik and I drove to Truckee, I told him what had happened during the night. He seemed surprisingly blasé about this, saying little in response.
It was as windy and cold as it had been the day before, and I wondered if Erik would again declare it a “horrifically bad” day for a mold tour. But Erik said the mold only goes really out of control when the weather first deteriorates. That day, he expected it to be bad but not dangerously so—perfect.
Erik pointed out the area where he’d seen that strange, neon-green mold growing on the lakeshore just before the epidemic had broken out. We drove past Cheney and Peterson’s old office and then headed toward the dreaded Truckee High School, where so many teachers had gotten sick. As soon we pulled off the highway toward the high school, Erik said he felt the mold already: “It’s a killer!” I, naturally, felt nothing.
We parked across the street from the high school, lest the car get contaminated just by being nearby. The high school was closed for a snow day, and workers were shoveling outside it. We stood outside the front doors, and Erik said he felt it, but not as powerfully as along the road. I tried to tune in to what I was feeling, but it was hard to detect anything beyond the cold making my body clench. Again, maybe I had a slight feeling of a needle in the heart, maybe a feeling that my brain was being compressed. I certainly didn’t have the heart palpitations or burning skin that Erik was describing, and the moments I might have been feeling something didn’t correspond well with the moments Erik said he did. We stood outside for just a couple of minutes and then dashed back to the car for warmth.
Next, we drove a few blocks to the Henness Flats Apartments, a public housing complex where, Erik said, a lot of people had gotten sick and testing showed high levels of toxic mold. When we drove up, I thought the apartments looked quite nice, seeming newer than they were. We walked through the complex of small, interconnected buildings, and I still felt pretty much nothing.
We went inside one of the buildings, into a little common area between the apartments. “It’s heeeere!” Erik said, making me silently giggle again at poltergeists. I paid very close attention to my body. I felt nothing.
Then I felt a wave of lightheadedness, and I started feeling rather out of it. Big whoop, I thought. The illness itself sometimes makes me feel lightheaded and out of it, so that means precisely nothing. I was also getting hungry, which could have the same effect. When we got back to the car, I pulled out an energy bar.
We started heading back toward Reno, stopping along the way at another area he said was bad that we could just drive through. Again, I could identify some slight funny sensations, maybe a feeling of brain compression, but they didn’t correspond well to when Erik said he was feeling it.
I was getting tired, I was still hungry, I was feeling grouchy, this whole thing was clearly a waste of time, and I wanted it to be over. But I felt like I should do something to thank Erik for his time, so I invited him to lunch.
Over lunch, I was so out of it that holding a conversation was painful. Erik continued bloviating about how ignored he had been, how unethical the researchers were, how terrible mold is. I desperately wanted him to shut up. I wanted to put my head down on the table, I wanted my food, I wanted to go to bed, and I never wanted to see this annoying man again in my life.
I apologized for not being much of a conversationalist. “It’s from the mold,” he said, and I thought, Yeah, well, maybe. It could also be from the hunger, or the illness, or the god-awful annoying company.
When I got back to the hotel, I napped, and when I woke up an hour later, I couldn’t walk.
I couldn’t even come anywhere close to standing up straight. I had to support my upper body by resting my hands on my knee
s to stagger to the bathroom. I felt indescribably awful, even worse than the night before. The awfulness was a bit different from what I was used to—what came to mind was that I felt poisoned, as if every cell in my body wanted to throw up.
I took a shower, following instructions, and was again astonished to find that the awful, awful, awful feeling went away. It seemed surreal, especially since showers had never helped before. Swimming had certainly helped, and I’d always showered first, but I’d staggered out of the showers just like I staggered in. But now I’m pretty much fine!
The next morning, I sat in bed, cuddling with Frances and trying to figure out what to make of the previous day’s events. Wow. Crazy Erik the Mold Warrior seems to be right. It all felt like a dream, as if the story were living me rather than the reverse. This outcome felt simultaneously absurdly unlikely and inevitable, and nearly impossible to fully absorb: All these years of suffering may have a simple explanation. It had all just been a microbe poisoning me, a single, external, physical factor. Maybe.
There was something bewildering, though, about having the explanation delivered by a raving guy with the disaffected air of a homeless person, rather than by a white-coated doctor.
The stories Erik had told me started to resonate differently in my mind and heart. What would it be like to figure out something that might be the key to the suffering of millions of people and have nearly no one listen to you?
Of course, it was a huge leap to go from mold being the problem for Erik, and a few other people, and now maybe me, to it being the problem for everyone with ME/CFS. And his strategies for bringing attention to his “clue” violated pretty much every norm in the scientific community. It was no surprise they hadn’t worked. Still, when I imagined it from Erik’s point of view, my heart broke a bit.
Don’t get ahead of yourself, Julie, I thought, putting my scientist hat back on. I needed to do a lot more experimentation before I was fully convinced that the effect was real—two data points were clearly insufficient. I winced a bit, imagining how disappointed I’d feel if the hypothesis didn’t hold up at this point—but one way or the other, I needed to know the truth. I didn’t think it made sense to do more in Reno, though, because with the exposures I’d had, I couldn’t be sure that any symptoms were from new exposures anyway.
So it was time to go home, for the real test: Would my trailers and belongings cripple me?
CHAPTER 14
HOMECOMING
As I crested the big hill on I-25, I got my first view of Santa Fe. Its familiar ridgeline zigzagged across the horizon, and the smooth white hump of Baldy shone in the winter sun. Home!
Ordinarily, my heart swelled when I saw those mountains I knew so well. But this time, I felt like a band was constricting around my chest. So much hung on what happened in the next 24 hours. I was counting on my trailers triggering a dramatic reaction and vindicating the moldies, and my Reno experiences had left me expecting that—sort of. It just seems so far-fetched, I thought. I’ve been in and out of my trailers so many times without a problem. I knew the moldies said they could explain that away, but still . . .
I felt trapped, like whatever happened, I couldn’t escape the fear and uncertainty. If I got back and felt just fine in my trailers, then my crazy experiment would be over, I’d still be terribly ill, and I’d have no idea what to do next. And in the “happy” case that my trailers did me in, I’d likely lose the straw-bale house I’d put my soul into along with all my belongings, and I might not be able to live in Santa Fe for years, if ever. And even then, I didn’t know whether I’d end up feeling better—my Reno experiments had only suggested that mold could make me feel worse.
I did hold out some hope that I might be able to live in my house if the mold hypothesis turned out to be true. Just before I’d left Death Valley, I’d heard from a nearby moldie that the area around my house—20 minutes north of Santa Fe—had good air, much better than Santa Fe itself. So as long as my house wasn’t moldy, perhaps I could live there after all.
Oddly, though, even that news had only reinforced my uncertainty, making me feel peculiarly let down. I’d grown attached to my image of me and Frances in a Vanagon in the desert, a bit like Thelma and Louise retreating from society (where Louise just happened to be a dog). The silence, the stillness, the expansiveness of the desert drew me. Something profound had happened to me while I was in Death Valley, and I worried it might get sucked out of me if I returned to ordinary life.
At the same time, the possibility of returning had awakened a longing to be in my house again, a longing so intense it frightened me. I had built a barricade inside myself against that desire—the only way I’d been able to stand being away for so long—and now I felt that barricade cracking. Once I return, will I ever be able to bring myself to leave again? And am I ready for that?
The idea of returning to the house like this—sick, poor, and alone—made me feel oddly ashamed. When I’d driven away to Santa Cruz nearly seven years earlier to start a grand new career, I certainly hadn’t imagined returning to my house with my life this much of a mess. I knew my illness wasn’t my fault, but still, the feeling niggled at me that I’d failed—and that if only I could restore my life to productive order before returning home, my illness would stay dreamlike, unreal, not fully attached to me.
My breath felt like a caged hummingbird. Working myself into a frenzy is certainly not going to help matters, I thought, and I consciously breathed in slowly, expanding my chest and belly, feeling the gaps grow between my ribs.
Suddenly, the band I’d felt cinched around my chest seemed to snap, and my lungs expanded easily. A thought fell into my mind, as gentle as rosewater: I died out there in the desert. This is all extra. So who cares about what happens next? It’s all bonus, all wonderful, an unearned gift no matter how it works out.
I felt as if I were sitting in my camp chair in Death Valley again, feeling the seeds of the desert’s spaciousness blossoming inside me. The valley’s huge and ancient stillness seemed to unfurl within my cells, quieting my body as it opened my skin, connecting me with the piñon-pocked hills around me, with the air above the town stretching off to the mountains. There’s nothing I have to accomplish. Simply breathing in and out counts as success. Everything I had ever worried about in my life now seemed dinky, absurd, as if I’d been obsessing about a battle among my own tin soldiers.
Astonished tears pricked at my eyes. The breath went in; the breath went out.
But then a sinuous whisper penetrated the wonder: Life certainly doesn’t feel like such a blessing when the pain is so bad you can only endure it moment by moment, breath by breath. And you might have to bear miseries far worse, like plenty of other patients do. Sure your nice little epiphany won’t disintegrate when tested?
I let the thought enter, felt its sting, and didn’t allow myself to clench up against it. I had to acknowledge that all that was true. I had no idea of the agonies awaiting me, or how robust this feeling would turn out to be. But I found that thinking about that didn’t squash the spaciousness pumping through my body like freshly oxygenated red blood cells. I felt as though a forgotten but inalienable birthright had returned to me.
I looked again at the Sangre de Cristo Mountains. Thank you for being here for me to love, I thought. Whether I’m able to make my home here again or not.
My plan was to stay at my friend George’s house that night. I’d save the big test—going into the trailers—for the next day, when I was fresh. Or, actually, I’d save it for the next night, when I planned to sleep there. Although my moldie friends had said that just a few minutes would be enough for me to know if the trailers were bad for me, I found that hard to believe. When I’d gotten exposed in Tahoe, I hadn’t been at all sure at the time, and it had taken hours before I’d really felt the mold hit me. If I slept in my trailers, I figured, I’d be sure to react—if I was going to react at all.
Since I was arriving earlier in the day than I expected, I decided to head out to my l
and just to say hello. I missed it. While I was there, I could get my tent set up as a retreat from the mold if the trailers indeed sickened me the following night.
Frances perked up from her slumber as we rumbled down our one-lane road, and when I rolled down the window for her, she wiggled her nose out it with intense concentration. As I pulled onto my land, I gave the ponderosas, oaks, and willows my usual silent greeting, but I found that I felt unborn, as if my individual self had dissolved and what was left of it was too undeveloped to commune with these great beings that had once been my intimate friends. I opened the door, putting my feet on the pine duff and letting Frances out of the car. Frances leapt out and sped after a squirrel, schooling it for its impudence.
Just below the trailers was a beautiful camping spot with a deep, soft bed of composted oak leaves, protected by overhanging oak branches. I’d have to clip a barbed wire fence to get there, which was easy enough—except that the wire clippers were in the trailers, and I had planned to stay out of the trailers until the next day. I took a deep breath outside, held it, dashed in, grabbed the clippers, and fled. Then I got to work.
Once the tent was up, I leaned against a ponderosa, smelling its deep butterscotch scent, listening to the stream. I felt all the possible futures projecting out from this moment like spreading tendrils, heading toward different universes, different lives, each inviting my thoughts to slide out along them, imagining their potential and uncertainties.
I don’t know. I can’t know. I stopped my thoughts from trying to fill the void of unknowing, and instead, I centered myself in it, feeling the spaciousness from my drive, feeling this precise unknowing moment as a space to occupy. I watched a bird pecking between the dead leaves in the driveway, felt a pine needle poking at my leg, rested my head against the knobbly bark of the ponderosa.
Through the Shadowlands Page 19