Through the Shadowlands

by Julie Rehmeyer

  In fact, though, John was both confident in Lao’s ability to defend himself and eager to collaborate on training Frances. We bought a baby gate to put across the stairs to give Lao a safe zone upstairs. Several times a day, Frances and I would stand at the bottom of the stairs and then John would appear at the top with Lao in his arms. Instantly, I would start cramming bits of cheese in Frances’s mouth. Frances had only one duty, to eat the cheese.

  Whenever I wandered toward the bottom of the stairs, Frances would trot over with a wagging tail, making her verdict clear: “This is an awesome game!”

  After many repetitions, I threw in a twist. When Lao and John appeared, I waited. Frances twisted her head my way: “Hey, where’s my cheese?” Instantly, I commenced cheese-cramming.

  That tiny moment was the beginning of victory. We had created a new neural pathway. Rather than cat being instantly linked to chase! and then to a brain explosion, it was now linked to a new idea, cheese!, which was in turn linked to me.

  From there, John and I designed a thousand variations. I made Frances wait a bit longer before getting her cheese. I asked her to sit first, or lie down, or shake, or stay and then come. John brought Lao closer. I held Frances in my lap and John set Lao down downstairs. We tied Frances up outside and let Lao use his cat door to go out. We brought Lao to Santa Fe for the first time—by then, we’d begun splitting our time between the two towns—and we started the whole process from scratch in the new location.

  Eventually, Frances learned to use the cheese to modulate her own excitement. She would watch Lao, her intensity growing, and just before she lost it and lunged at him, she’d turn to me for cheese, calming down as she licked it from my fingers. When she did especially well, she’d prance toward me with head high, as if saying, “Look at me, I’m so good! Cheese, please!”

  Lao apparently held out hope for Frances’s redemption despite her appalling conduct, and he initiated his own training program as well. He would come partway down the stairs to observe Frances, to her fascination and delight. As long as she was reasonably calm, he stayed, studying her. But as soon as she started jumping or barking, he split. Some time later, when she had calmed down, he’d appear again. Mellowness, she learned, was the only way to keep him around.

  Each step of progress—Look, Frances saw Lao through the screen door and didn’t freak out! Lao got within five feet of Frances while she was tied up!—felt to John and me like a ratification of our relationship.

  We also celebrated my physical progress. After more than a year of being stuck in bed much of the time, I thought my muscles would have withered into dental floss, but my ability to run came back astonishingly fast. Week by week, I could run further, climb higher, go faster.

  At the end of the summer, John ran a 50-kilometer race in Silverton, most of it above 10,000 feet. After he’d been running five hours, I started from the end and ran the course in reverse until I met up with him. I ended up running a total of nearly eight miles, and I even managed to keep up with John to the finish. Just make John run five hours more than I do and we’re kind of equal! I started dreaming of running a half-marathon.

  At the same time, I was reacting to mold more strongly and bizarrely, so much so that I could hardly believe my own experiences. I picked John up at the airport after he had traveled to Berkeley, and to protect myself against Berkeley “ick,” I brought him fresh clothes to change into in the airport and a trash bag to enclose his suitcase. My precautions only went so far—I sure as heck wasn’t going to keep from hugging him when he first arrived, and he couldn’t shower before changing his clothes—but any exposure would be far too minuscule to matter, I figured.

  About 10 minutes from home, I could feel the paralysis starting in my lower back. I was also unreasonably hungry, and a strange, foreign crankiness had invaded my delight at having John home. Both unreasonable hunger and unreasonable crankiness, I’d learned, were signs of exposure.

  We arrived home and John stripped his clothes outside as I gimped into the house, going up the stairs on hands and feet. John came up from behind me, scooped me up, and deposited me straight into the shower as I giggled.

  The shower restored me as usual, but my worries didn’t end there. We had to decontaminate his stuff, and, I now realized, even absurdly tiny amounts of it mattered. Plus, from what I’d heard, “ick” was far harder to get rid of than ordinary mold and spread more easily to other objects. My moldie friends had told preposterous stories about cross contamination—one said she had to move out of her house after a pair of shoes contaminated the whole thing.

  We washed John’s clothes at a friend’s house and then hung them outside to dry in the sun. A day later, I tested his jeans by draping them over my face for 10 minutes—and then I couldn’t walk. As far as I could tell, that never happened anymore unless I’d just been exposed to something bad. But how much mold, or ick, or whatever, could possibly be on his jeans after they’ve been washed? This just seems crazy! But it was hard for me to argue with my body’s responses.

  I hadn’t worried too much about that bizarre story about the shoes until now: Could one trip to Berkeley ruin my house for me forever? I tried to reason with myself to keep my anxiety from running wild, reminding myself that John had visited Berkeley many times before we met without taking any precautions, and I was able to tolerate his house. So it must be that whatever bothered me dissipated over time. Don’t go borrowing trouble, Julie.

  Another wash, a few more days in the sun, and John’s clothes felt fine to me. I felt some of the tension drain from my body. Maybe I won’t have to dive quite that deep into the craziness of the moldie world.

  Despite my extreme caution, I felt like I careened from one hit to the next like a pinball. I seemed to be especially susceptible to any exposure while I slept. John and I bought a bed together, and while sleeping in it felt like an unimaginable luxury, over the next few days, I found myself feeling less good. I generated a bunch of hypotheses about what might be going wrong, but day by day, I felt worse.

  When I got crippled after a short nap on the bed, the verdict seemed clear: The bed was doing me in. My reactions, it seemed, got stronger and faster as an exposure was repeated.

  At that point, I moved back to the camping pads and immediately improved—but not completely. What’s the problem now? I guessed that perhaps the pillows had gotten contaminated by their extended period on the bed, so the next night, I used a freshly washed, folded towel for a pillow. I woke up feeling fine. Later that day, I tested my pillow theory by holding one to my face, and I felt myself deteriorating. I guess I figured it out right. I washed the pillows, retested them, and concluded all was okay.

  That episode passed, but later, I woke up in the middle of the night paralyzed again and had to sleuth out the problem. If one of us went into town and simply sat briefly on the bed, that was enough to do me in. Even setting a backpack that had been through a contaminated building onto the bed briefly was enough. Once, Frances went to doggy daycare, and although the building was all concrete and felt fine to me, I reacted to the bed after she’d been on it. I figured that she might have played with a dog from a moldy house and picked it up on her coat.

  John and I developed a routine: I’d wake him when I woke up feeling poisoned, and he’d help me to the shower. Then he’d pull the sheets off and go shower while I, freshly decontaminated, would put new sheets on. Then back to bed, fingers crossed that we’d exorcised the mold demon. Usually it worked, but on unlucky nights, I awoke paralyzed again, and we had to come up with a new theory: The pillows were contaminated, or perhaps it was the comforter underneath its cover. We repeated the whole routine of shower and sheets, taking one more step of replacing the pillow with a towel or using a different comforter. Eventually, I slept.

  I wouldn’t have sworn that all the stories I concocted to explain these middle-of-the-night adventures were true. After all, I came up with theory after theory until the problem went away. Perhaps I felt better only because
the Greek gods had smiled upon me, and I took that as evidence for whatever theory happened to be in play at that moment.

  But that skepticism couldn’t carry me far enough to dismiss the overarching idea that some kind of contamination was sickening me. Every time I woke up feeling poorly in the night and ignored it, hoping I’d be okay, I only felt worse. Every time I took a shower, I felt dramatically better. When I ignored a clue—say, I forgot and put my backpack on the bed, and I didn’t change the sheets because really, how the hell could that cause a problem?—I paid the price.

  I watched for inconsistencies that might reveal cracks in my stories, but I didn’t find any revealing flaws. I shopped in Trader Joe’s several times, each time hoping it wouldn’t bother me, and each time I had to flee without getting groceries. I went to the Department of Motor Vehicles in Boulder to renew John’s registration and stayed after it started feeling bad to me because I was determined to finish the errand. I got paralyzed, and only afterward did I remember that a fellow moldie in Boulder had warned me about it—I’d forgotten, figuring I wouldn’t have reason to go there anyway. Often, when I found that a part of a friend’s house bothered me, the friend would say, “Oh, yeah, we did have a roof leak there . . .” A friend who was shocked that her house bothered me discovered mold throughout her roof insulation a few months later.

  The evidence that something environmental was doing me in was so strong that I couldn’t seriously doubt it—but I constantly prodded at the boundaries of my knowledge. Certainly, something in water-damaged buildings was bad for me, but it could have been mold itself, or the toxins molds produce, or bacteria or particulates or volatile organic compounds or who-knows-what. And who the hell knew what ick was, if it even existed. Given how good I felt when I felt good, avoiding anything that seemed to bother me was clearly the right path. But still, I struggled with how implausible it all seemed.

  I felt a little better about it some time later when I talked to someone who had worked in a “clean room” manufacturing computer chips. As he described the endless precautions—HEPA filter ceiling tiles, fans that pull air through the ceiling tiles down through a raised floor and outside, Gore-Tex suits and double layers of gloves and on and on and on—I had an urge to move into one. Then he described how at one point, the quality of the chips deteriorated despite all this. They determined that the chips were contaminated with minute quantities of boron—which was bizarre, since they didn’t use boron in their entire manufacturing process. They eventually traced it to one of the workers, who was washing her new baby’s diapers with boron (but not her own clothes). The boron had found its way onto her clothes, through all her protective gear, past the elaborate filtration system, and onto the chips. The sleuthing process he described sounded so familiar that I didn’t feel quite as crazy.

  One morning during a bad period of middle-of-the-night poisonings, I asked John if he ever wondered if the whole theory was a bunch of hooey. He certainly never expressed anything along those lines to me, but really, how could he not? I certainly did!

  “That’s not important,” John said. “All that matters is how you feel.”

  I pushed further—but what if my explanation for how I felt was all a nasty fantasy I’d been beguiled by?

  “I made the decision from the beginning to never question it,” he said. “It just would make it more complicated and harder for both of us. If it’s true and I doubt you, I’m going to make it harder on you. And if it’s not true, well, you believe it is. Either way, I’m going to have to do the same thing, which is to change the sheets and take a shower. And ultimately, when you don’t feel good, and you have an idea about what might make you feel better, why not do it?”

  For him, that was that. Along with countless showers and endless laundry, he helped me get to the bathroom, left buildings on my say-so, rubbed my back, made me coffee, cooked me meals, reassured me when I got discouraged. “What can I do to make your life more wonderful?” he’d ask.

  While he left it to me to figure out when my theories were right and wrong, he sometimes sleuthed out problems that eluded me. Driving to a friend’s house for dinner, I found myself deteriorating so fast that by the time I realized there was a problem, I could hardly hold my torso up and couldn’t speak at all. My thoughts moved so slowly they were barely decipherable, like a 78 rpm record played at 33.

  John asked if I was okay, and when I didn’t respond, he pulled over. “Take that sweater off!” he barked. I had borrowed it from him, and he realized he hadn’t washed it in ages. When I could barely move my arms, he pulled it off me.

  I instantly improved, enough so that I could hold my torso up and talk and think. I staggered into the shower at our friend’s house, and then we had dinner as planned.

  That experience left me haunted by a nightmare of being out alone, going into a badly moldy building, getting paralyzed and unable to speak, and being taken to a hospital that turned out to be moldy. What would happen if I didn’t get away from mold? Would anyone be able to figure out that they should contact John?

  I ended up getting a medical ID bracelet that said:

  SEVERE MOLD ALLERGY

  GET ME TO FRESH AIR

  RINSE BODY AND HAIR

  CALL JOHN: XXX-XXX-XXXX

  Anytime I went into town without John, I made sure I had it on.

  Standing in line at the grocery store on my own one day, the bracelet caught my eye, a black nylon strap against my wrist with an etched metal plate. I read and reread the last line: “CALL JOHN.”

  Call John, I thought. If something happens to me, call John.

  I wasn’t alone anymore.

  CHAPTER 18

  THE DEVIL DISEASE

  We were only a few weeks into our relationship when John first asked: “I’d like to take you to Tasmania. Will you go with me?” He was already planning a trip himself—his dad had gotten remarried to a Tasmanian woman, and they split their time between Tasmania and Denver. Now that I was in John’s life, he wanted it to be our first trip together.

  When I confused Tasmania with Tanzania, John had to explain to me that Tasmania was an island state off the southern end of Australia, very far from Tanzania, a country in east Africa. He showed me pictures from his previous trip to Tasmania. Some showed white sand beaches edging aquamarine water that looked like the Caribbean; others showed neon-green, grassy hillsides that looked like Ireland; and others showed impenetrable, fern-filled bush that looked like Middle-earth. Instead of deer and squirrels and coyotes, it had wallabies and Tasmanian devils and potoroos. To me, it sounded only a small notch less exotic than Timbuktu.

  So I desperately wanted to say, “YES! Duh.” I had just one wee concern: Flying to Tasmania might kill me.

  What if the plane was moldy? What if I couldn’t tolerate his dad and stepmom’s house? What if the outside air was filled with the dreaded “ick”? What if I was sick the whole time, while trying to make a good impression on John’s folks? Also, as crazy as I was about John, I’d only met him weeks before—was it really wise for us to be planning international travel together, months away?

  So I made a vague grunt into which I tried to pack interest and openness with a sprinkling of uncertainty and doubt.

  Every few weeks, John brought it up again. When I responded with my various worries, he started brainstorming energetically. If the plane was moldy, I could use my respirator, he suggested. His stepmom’s house was just above a beach where they set up a campsite—if the house was moldy, I could sleep there. If I was sick while we were there, well, then I was sick: He wanted me with him, sick or well, he said.

  His enthusiasm was contagious. I read on my moldie list about a carbon blanket that acted a bit like a magic shield, trapping all manner of crap in the air, and John bought me one and got a beautiful cover made for it. We started looking into flights that avoided airports with terrible reputations among moldies. Together, we came up with (and giggled over) the idea that we could bring strap-on roller skates with
us, so that if I got paralyzed, John could push me to safety.

  Carrying that latter idea out turned out to be complicated, because we discovered that no one manufactured adult-size strap-on roller skates anymore. I did manage to find a version that went under your heels only, and you were supposed to lift your toes to scoot forward, spinning groovy, flashing, multicolored lights. I bought a pair to try out. I strapped them on at a moment when I was crippled, and as soon as I stood up, both legs swept out from underneath me, my ass careening toward the floor. John caught me inches above the ground, and then we laughed until we cried. We gave up on that approach and tracked down some antique metal clunkers on eBay.

  Part of me still thought it was insane to fly to the other side of the world when I was barely keeping myself functional while living a tiny life, avoiding unknown buildings whenever possible. Just going into a random Starbucks was a game of Russian roulette. My entire life was organized around my body’s needs, and I still wasn’t even well enough consistently to do much in the way of work. But John swept me up in his enthusiasm so much that I couldn’t imagine saying no, especially as he proved himself so capable of handling the disasters that were an ordinary part of my life. John’s the one who will have to pick up the pieces if I fall apart. If he’s up for it, why shouldn’t I be?

  The trip started seeming more plausible to me in the early fall, when I achieved enough stability that I could start working again. I revived my math column for Science News, and I found it utterly soothing to talk to a game theorist about his advice to climate negotiators or to an economist about the problems with Medicare’s auction for durable medical goods. Massaging words on a page was like massaging balm into my soul. There is nothing, nothing in the world as grounding as simply doing my work.

  That got me thinking about how awesome it would be to report a big feature story while we were in Tasmania. When William and I had gone to Peru a few years earlier, I’d had a ball writing two little stories from the trip, talking to researchers and getting an insider’s view of the country.