But now I had grander visions of a long, deep, narrative feature article. I found a story I was excited to write about: Over the previous several years, scientists had come to realize that a newly discovered contagious cancer might wipe out Tasmanian devils entirely—and, because devils play such a key role in the ecosystem, a whole raft of other species could disappear along with them. I chose Discover to pitch the story to, because a friend of mine was an editor there, and I knew she’d be sympathetic if my health gave me trouble. They bought the story. Woohoo! I’m going to Tasmania! To write a story on assignment!
A couple weeks before we left for Australia, I started reacting to the carpet in the bedroom of John’s house in Boulder, where we were spending half our time. We retreated to sleeping on camping pads in the living room and tried every trick I could think of to fix the bedroom—ozonating, sprinkling the carpet with baking soda and vacuuming, steam cleaning. But my reactions only grew more intense. When I carried some clothes that had been on the carpet to the washing machine, my face started frowning involuntarily, the corners of my lips pulling down into a bizarre grimace. I felt like calling out, Hey! Who’s frowning my face? Cut it out!
I knew the only solution was to get the hell away from whatever was doing this to me, and soon we returned to Santa Fe. But even there, I found little respite. John had previously brought down one of his beautiful oriental rugs, which had once sat on the carpet. Though I’d had no trouble with it before, now just walking past it crippled me. Even worse, Lao and Frances both liked to lie on that carpet and had spread the contamination around the house, including to the couch and, worst of all, the bed. I took shower after shower, only to get whacked almost immediately after emerging. I huddled in the bathtub, the only place I felt safe.
We threw everything we possibly could into the new washing machine I had bought, including the couch cushion covers. But I found myself reacting even to freshly washed items. I wanted to cry. My brand new washing machine is contaminated! Other moldies had reported that could happen. We threw borax and vinegar and every other decontaminant we could think of in the machine, ran it on its self-clean cycle, and crossed our fingers. Then we ran a test load and I draped a T-shirt from it across my face, breathing through it for 10 minutes, waiting for my nervous system to freak out. Thankfully, I was okay.
Even that didn’t end the nightmare: I ended up mysteriously crippled again. I was near despair, but John figured out that we’d mixed up some contaminated clothes with some freshly washed ones. We began scouring the house for unexploded ordnance, washing anything conceivably contaminated or that had touched anything conceivably contaminated.
Eventually, I was okay again—but rattled. Seriously? I’m this vulnerable, and I’m going to fly to Australia? Am I nuts?
Despite my worries, we headed to the Denver airport on November 14, 2012, on our way to Tasmania. Just walking through the airport felt transgressive. Ever since I’d gone to Death Valley nine months before, unknown buildings had been landmine-studded fields for me, to be stepped through with utmost care. But here I am, walking through the airport tra la la la like a normal person!
Well, truth be told, not quite like a normal person—I had my carbon blanket wrapped around me, and I had a backpack filled with a respirator, a carbon mask, roller skates, two fresh shirts, and two fresh baseball caps. Still, it was normal enough to blow my mind.
I walked onto the plane with my Spidey sense on alert, but all seemed to be fine. I made it through the Los Angeles airport without problems.
The next step was the scary one: boarding a 737 for a 16-hour ride, with no exit available. Seems okay. I think it’s okay. Is it really okay? It really was okay.
The Melbourne airport was fine too, though I felt freakish, wrapped in my carbon blanket in full Australian summer. I was fine through the next hour-and-a-half flight to Hobart, and then in John’s dad’s car. It felt like a miracle.
Just before I faded off to sleep in the car, John’s stepmom, Sue, pointed to a dark hump in the road. “That’s a Tasmanian devil,” she said. “Roadkill. They get hit all the time. They’re scavengers, so they come out onto the roads at night to eat other roadkill, and then the next car takes them out.” We veered around the small, furry shape, about the size of a beagle.
“They haven’t become less common, with this cancer?” I asked.
“Not yet,” Sue said. “They’re rare in the northeast corner of the island, but here, they’re everywhere. You can hear them sometimes fighting during the night, screaming and growling at one another and biting each other on the face. Quite a ruckus they make! That’s how they got their scary name. Farmers hate them! They eat their lambs and chooks.” “Chook,” I learned, was the Australian word for chicken.
When we arrived at Sue and Jack’s house, I walked in nervously—but all seemed fine. Even the mattress was okay for me. In 32 hours of traveling, I’d had nary a problem. The mold gods are truly smiling upon me.
Tasmania was a fairy-tale kind of place. Jack and Sue’s charming old cottage perched on a grassy hill that sloped down to a bay, with sparkling water on two sides. Sheep wandered through, keeping the grass trimmed. Jack spent his days digging in his garden, sipping gin and tonics on the porch with Sue at happy hour, dropping in on friends nearby.
Life moved slowly and amiably—which drove me mildly crazy. I wasn’t interested in a relaxing holiday. I’d had quite enough not-working over the last couple of years—I wanted to work! So between games of horseshoes and strolls to the beach, I snuck off to my computer to do my reporting.
I’d arranged to do most of my interviews outside, but I didn’t have that luxury for my first one with Menna Jones, a wildlife biologist at the University of Tasmania. She told me that her effort to save the devils now kept her mostly apart from them, supervising students and talking to state administrators rather than being in the field herself. I tried to imagine what I’d say if I couldn’t tolerate her office, but I couldn’t come up with anything that didn’t sound crazy. So I decided to just hope for the best and deal with whatever happened when the time came.
I stepped into her office anxiously—and it was fine.
Jones smiled at me from across her desk, a warm but harried woman with a bush of hair so thick it wouldn’t have surprised me if a bird had come flying out of it. She described how she’d spent a decade hiking through the Tasmanian bush, trapping devils, working out their mating patterns. Then in 2001, a devil showed up in her trap with a hideous tumor on its face. She showed me a picture of it: A mass obliterated his right eye and erupted into an oozing, red-and-black cauliflower across his cheek, and another swelling deformed his left cheek into a deceptive chipmunk-chubbiness. I gasped, but she said that she didn’t think much of it at the time—scientists have to grow a thick skin regarding such horrors.
But then two more devils appeared with similar masses. Over the next months, she watched the disease march down the peninsula she was studying. When she returned to the initial spot a year later, she caught a quarter as many devils as she normally did, and a third of those had masses eating their faces.
Somehow, it seemed, cancer had become contagious.
Soon, another researcher figured out that the cancer cells from all these different devils were genetically identical. All the cancers in all the different devils had come from a single unlucky female devil who had died of the disease a couple of decades earlier. Somehow, her cancer cells had learned how to elude the immune systems in other devils. It had become a parasite.
Jones watched the devil population fall by 50 percent a year once the disease arrived in an area. And she realized that far more was at stake than just Tasmania’s iconic animal: If devils vanished, other animals would fill their ecological niche—especially foxes and cats, which had been imported onto the island. And foxes and cats would wipe out a panoply of species found nowhere else, like the eastern barred bandicoot, the Tasmanian pademelon, the eastern quoll, the long-nosed potoroo, and the eastern bett
ong. The names of these species all sounded to me like they’d come from a children’s fantasy novel.
When Jones described the state’s effort to save the devils, I felt a pang of envy. Tasmania was spending many millions every year to fund microbiology research that might lead to a vaccine, field research to understand how the disease was spreading, captive breeding programs to preserve the genetic diversity of the species, on and on and on. If the CDC had responded as forcefully to the outbreak of ME/CFS in the ’80s, would I be all alone in dealing with this damn illness? I wondered how much the Tasmanian devils were helped by the vulnerability of those potoroos and bandicoots and bettongs—no one outside the ME/CFS community seemed to feel much threatened by the disease, thanks in part to all the psychobabbling research suggesting we were just crazy people. Maybe what we needed was a Looney Toons character based on us, like the ferocious, whirling Taz. Taz might have few similarities to real devils, but he’d certainly created worldwide awareness of them.
A few days later, John and I flew to the mainland to see one of the efforts to prevent this marsupial apocalypse: Devil Ark, a park where they were breeding devils in captivity to create an “insurance population” that would guarantee the species wouldn’t go extinct. Someday, if wild devils were wiped out completely, the disease would vanish with them—and these captive animals could repopulate the island.
That night, the reprieve from the mold gods came to an end. We tried hotel room after hotel room, and I was forced to reject each one within seconds. We were prepared with camping gear as a backup option, and our GPS helpfully directed us to a campground nearby. But John was fighting a cold and was exhausted after driving and flying all day, and I could see that he was not thrilled about camping.
When the GPS told us we’d arrived, we were on a tiny dirt road with no sign of a campground anywhere. John gave a heartbreaking groan, and I froze. My illness seemed to be pushing him to his limits for the first time. What if it pushes him too far?
“We can just camp here!” I said brightly, and I moved to set up camp while John rested. But then I hesitated—we couldn’t rinse the mold off our bodies. We’d contaminate our sleeping bags, and then we’d really be in trouble. So we’d have to sleep in the car, a minuscule two-door Hyundai. The only thing I could think of to make that less awful for John was to give him the passenger seat, free of the steering wheel. He accepted the offer without acknowledgment. Boy, he really is fried.
I slept, but poorly. I figured I was bound to be crippled in the morning, since I was sleeping with mold on me, but I couldn’t figure out anything to do about it. I just hoped I’d be able to manage the day’s reporting.
In the morning, everything was better than expected: I’d gotten off lightly, achy and miserable but ambulatory. John’s cold, and mood, were much improved, and he even spontaneously thanked me for giving him the passenger seat. When we got up, we both goggled at where we were, with mist swirling around endless hills covered in eucalyptus and tree ferns. I’m in Australia! I’m in Australia with my beloved, and I’m in the middle of reporting a story!
As we toured Devil Ark, learning about all their efforts to create a safe haven for the devils from this terrible disease, I again felt a stab of envy. I sure wish scientists were moving heaven and earth like this to create a safe place for me. After the tour, the keeper brought out a baby devil he was hand-raising to take into schools. I leaned over to John and whispered, “Think that ME/CFS patients would be getting more help if we were this furry and cute?” John whispered back, “Not from me! You’re plenty cute, and I wouldn’t want you any furrier.”
That night, our luck returned. We found a hotel room that worked for me that night, complete with a swooningly wonderful shower and bed. The next day, we flew back to Tasmania.
I had one last reporting trip, to Maria Island (pronounced mur-eye-er). The island had never had its own devil population, and researchers had just released devils there that had been certified disease-free, so that they could live truly wild lives while still being protected from the disease. We deliberated about whether John would join me—he wanted more time with his dad, plus this trip involved no buildings, so it seemed reasonably safe. Still, going alone felt daring given everything I didn’t know. Could there be “ick” in the outdoor air somewhere here Down Under? I knew John would have sacrificed the time with his dad if I’d asked and that he had the emotional flexibility to get excited about joining me. But when I thought about asking him to change his plans, it felt as though it would put a small kink in the ever-thickening web of connections through which energy flowed between us.
Plus, I had a feeling as if I were caught up in a protective charm. It wasn’t that I imagined that nothing bad could happen to me—after all, we’d had to sleep in the damn car, and I fully expected plenty more disasters to come—but those bad possibilities no longer turned my bowels to liquid. My fears in the past had concentrated themselves in the conviction that when it really mattered, those I loved would fail me and I’d be all alone. But Death Valley had plunged me into that fear and out the other side—and now, every day with John, I felt more met, more connected. Whatever happened, I could deal with it. So I drove off in our rental car in the early morning light, alone.
Maria Island felt like a fairy tale within a fairy tale. The water surrounding it was so clear that it gave the deceptive impression it must be as warm as a Hawaiian shore, though the island was actually one of the closest pieces of land to Antarctica. The bush was so thick that even a machete couldn’t cut a trail. Flowers blossomed on bushes all around.
The researchers and I zoomed around the island on a Polaris, a sort of cross between a golf cart and a four-wheeler. Then we tromped through the woods to download pictures from the cameras they had sprinkled around the island, with stinking, fly-buzzing wallaby carcasses nearby to lure the newly released devils in (and to provide them some extra food, in case they didn’t immediately catch on to finding it themselves). The devils had inspected the carcasses but barely eaten any, and the footage showed them sniffing around, sleek and fat and happy. I was struck by how historic those grainy images were. Never in history has a Tasmanian devil been on this island before. And I’m getting to witness it!
I felt far more confident about flying home than I had coming, but sitting on the plane hopping from Hobart to Sydney, there was no denying that I was in trouble. I could barely breathe, barely move. It was too late to get off the flight.
“You okay?” John asked, and I shook my head almost imperceptibly. He pulled out my carbon mask, placing it over my mouth and nose. “Better?” he asked, and I managed another near-imperceptible shake.
Oh, jeez, I thought. I may be in really, really big trouble here. The flight was only an hour, but I found myself imagining going into convulsions.
John dug my respirator out, the big one that made me look like an insect, and placed it over my head. I breathed in once, twice, and my nervous system calmed. Oh thank god, thank god. I gave John a thumbs-up, and I saw a mirroring relief pass over his face.
A flight attendant came over, somewhat alarmed, to inquire about the respirator. I wondered if she imagined that I might be about to set off tear gas. When John explained, she transformed into helpfulness. They had oxygen on the flight, she said—would that help? I was tempted to try it, but I decided not to mess around. John asked the flight attendant to arrange for a wheelchair for me in Sydney, since I probably wouldn’t be able to walk well. He also got her to arrange for me to be able to shower in the airport.
We also realized with some horror that we had only 45 minutes to make our connection—and that we had to change terminals. We explained this to the wheelchair pusher in Sydney, and he ran. He took us straight to the Qantas lounge (a revelation, complete with a gorgeous view, comfortable couches, free food, and booze), and I took the fastest shower in history. He called ahead so we wouldn’t have to wait a moment for the bus that would take us to the next terminal. He shot us to the front of the secu
rity line, and then he turned the wheelchair over to John. John threw him a $50 tip and took off at a run, playing wheelchair derby around the shoppers in the duty-free area. We arrived at our gate 10 minutes after the plane was supposed to have left, but it was still there.
I walked onto the plane and apprehensively breathed in. It was okay.
I settled into my seat and rested my head on John’s chest. He wrapped his arms around me. It’s really, really okay, I thought.
CHAPTER 19
MOLDY SCIENCE
I couldn’t seriously doubt the mold hypothesis anymore, but still, I kept longing for science. Good science, from respectable researchers, not crusading doctors with an agenda. I wanted papers in Science and Nature, conferences, uncontroversial findings, scientists quietly working away at their lab benches. And most of all, I wanted science to prove I wasn’t simply crazy.
I started by taking matters into my own hands: I set out to prove I had a superpower. I wanted to demonstrate that I could reliably detect mold—or, well, whatever contaminants did me in, since I couldn’t be sure it was mold, or mold alone.
To do it, I carried out the experiment I’d been pondering for months: I performed a double-blind, placebo-controlled, randomized trial, the kind often called the “gold standard of science.” I bought two identical packages containing a dozen washcloths each. I sent one package to a friend in Berkeley, asking him to open it and place the washcloths around his house (which was also the only house I’d lived in that had visible mold). For two weeks, the washcloths absorbed whatever was in the air there, and then my friend returned them to me.
I kept the other package in my house in Santa Fe. These latter would act as a placebo control, since I had never experienced a mold reaction there.
Through the Shadowlands Page 25