Through the Shadowlands

by Julie Rehmeyer

  As I test-drove it, I had a few alarming tinges, including the shooting-pain-in-the-heart feeling that I had been told was an indication of the evil “ick.” But it was so mild that I didn’t make much of it. Jesus Christ, if you’re really paying attention, you can feel all kinds of weird things, right? I arranged to have the car overnight so that my mechanic in Santa Fe could check it out and so that I could have a more extended period to test it. As I was driving home, I had a tight feeling in my lower back that could be an indication of walking troubles. I pulled over and found I could barely get out of the car.

  So I turned around and skedaddled on back. I rolled all the windows down, trying to get as much fresh air as possible. When I arrived at the lot, I staggered out of the car, bracing my arms on my knees, scuttling like a slow, loud, groaning crab. The salesmen were agog. One came over to help, and I asked him to get me a trash bag to sit on, because I was worried about cross-contamination. He looked at me like I was crazy, but he did it.

  I called an acquaintance in Albuquerque to ask if I could use his shower. When I arrived and staggered out of the car, his jaw dropped. I felt the shower do its work within seconds, like a sheath of immobility was washing right off me. I was walking fine when I got out. When my friend saw me walking normally after the shower, he cried, “Nooo! You’re not serious!” And later he said, “You live a weird life.”

  I felt disbelieving myself. I’d had that experience many times before, but I hadn’t gotten over the nonsensical bizarreness of it. What mechanism could possibly explain that? I could imagine the mycotoxins causing some kind of neuroinflammatory response, but a shower wouldn’t immediately stop the inflammation entirely, would it?

  Later, I tried a second car in Albuquerque, and this time, my body gave no alarm signals. I drove it home without difficulty too. But when I drove it to the garage to get it inspected the next day, I started feeling bad within minutes. How can this be? Yesterday, I drove it all the way from Albuquerque without a problem. Soon breathing became difficult. Okay, okay! I’ll take it back! Just let me get there before I asphyxiate! I drove with the windows down, wondering if I’d have to pull over and lie down in the weeds on the side of the highway in the rain, waiting for some cop to come along and rescue me—or if I’d pass out, have a wreck, and kill myself, or worse, somebody else. I arrived intact, but staggering. When I got back into Gary’s little Impreza, I patted the dashboard gratefully.

  Over the next several weeks, I found that my responses to buildings became clearer, stronger, easier to assess. Plus, I’d found key buildings I could trust, along with ones to avoid, so I less frequently had to test unknown buildings. My worries about my house had faded, and I even started doing some work again, for the first time in months. I settled into a pattern of regular short runs, building up my distance slowly, thrilling at every expedition.

  When I made it through an entire week with nary a day of catatonia, I felt as if I’d just aced a final exam.

  CHAPTER 16

  A WAKE AND A BAPTISM

  After one run in early May, I felt exhausted. Even worse, I felt lousy the next day, and the same thing happened the next time I ran. Plus, my overall energy had sagged a bit. It was frighteningly similar to the end of my remission in Berkeley. Maybe this is all just a chance improvement, and now the Greek gods are revealing their prank.

  I took a deep breath, trying to breathe away my growing panic. Then I thought, I died out there in the desert. This is all extra, an unearned gift no matter how it works out. I breathed in, long and slow, and felt as though Death Valley filled my chest.

  I wrote to my moldie friends, who quickly offered a diagnosis: Now that I’d been out of mold for long enough, my body was starting to detoxify, pulling mycotoxins and other toxins out of my tissues and getting rid of them. That was a good and necessary thing, but it came with a downside—as the mycotoxins traveled through the bloodstream before getting filtered out, they poisoned me afresh, like a pinball lighting up a pinball machine anywhere it touches. When I first started avoidance, this detox process hadn’t ramped up, so although I had plenty of toxins stored in my tissues, they weren’t moving into my bloodstream and hence weren’t making me feel bad. Without fresh exposures, my blood levels of mycotoxins were low, and I felt good. Now that the toxins were seeping out of my tissues, there were more of them in my blood and it was making me feel worse.

  Detox . . . groan. My skepticism about the mold hypothesis as a whole had been so enormous that I’d held my abundant skepticism about detox in reserve. The first I’d heard of detox was years earlier at a spa, when I’d overheard a young man flirtatiously telling a nubile girl that she should jump into the cold plunge because it would squeeeeeeze the toxins right out of her. The notion of these invisible bad actors squirreling themselves away in our bodies, causing all kinds of untraceable damage, struck me as laughable, and the multiplicity of supposed detox cures was absurd. Drink lemon juice with cayenne! Brush your skin! Go on a juice cleanse! Sweat in a sauna! But not just any sauna—a far-infrared sauna. Wait, no, make that a near-infrared sauna!

  But I no longer had the luxury of sneering at such ideas. Since I had already made the leap to believing that mold and its invisible buddies were causing me damage, it was a short step to imagining that some of them were capable of squirreling themselves away in my body and making me feel bad as they came out. I swallowed my disdain and listened up.

  The most common recommendation was that I take cholestyramine, a drug which was more commonly used to reduce cholesterol but which Ritchie Shoemaker, the crusading mold doctor whose books I’d found incomprehensible, claimed also binds with mycotoxins. The idea was that mycotoxins float in and out of the gut from the rest of the body, so cholestyramine could mop them up as they passed through. The drug was low-risk, so I started taking it. I also took other low-risk steps that seemed sensible in any case: I continued exercise at whatever level my body was up for; I started eating huge quantities of vegetables; I made my own kefir for its probiotics. But I hesitated before doing more. Which of the zillion possible methods were effective, which were kooky, and which were downright dangerous?

  I took a step, which, given my accumulated experiences, felt almost radical: I asked a doctor. For years, I’d heard about a doctor in Santa Fe who specialized in environmental illness, Erica Elliott, and I figured it would be good to get a perspective outside the weird little world of my moldie friends. Her MD didn’t carry much weight for me, though—even Klimas, as wonderful as she was, hadn’t been able to help me. I figured I’d just have to hear what Elliott said and then decide whether it seemed worth listening to.

  The first question Elliott asked me when I went into her office was, “Does it feel okay in here to you?” I had never been asked that before—and by a doctor! I was delighted to be able to say yes.

  She listened intently as I told her my story, occasionally jumping with motherly enthusiasm: “That’s exactly right!” “You figured that out all by yourself?” “You’re doing such a good job!” And she said that yes, detox was indeed the next step. “These are toxic times!” she declared. “It’s not like the 1940s. We’re all loaded with toxins in our bodies.” So, she said, we’ve got to give our bodies some help getting rid of them.

  Internally, I rolled my eyes at this a bit. I wasn’t so sure that our world was much more toxic than it was in the 1940s. I thought of the Cuyahoga River, which caught fire 13 times starting in the mid-1800s but was now full of fish, thanks to the Clean Water Act. I also thought of the moths in Manchester, England, that had evolved to become black during the mid-1800s because the industrial pollution was so bad that the white moths became glaring targets for birds. After the air became cleaner a century later, the white moths came back. I didn’t like or much believe the story that the world was a polluted, threatening place, constantly endangering my health. Plus, I thought, our bodies are built to get rid of dangerous chemicals—that’s what we have livers and kidneys for.

  But I s
hut up my internal dialogue and listened. Saunas were Elliott’s first recommendation. It was well documented, she said, that we sweat out a huge variety of toxins, including heavy metals, polychlorinated biphenyls (PCBs), and mycotoxins. (I later checked on this, and she was right.) One patient of hers, she said, reported that her sweat smelled like the dry cleaners she had lived upstairs from as a kid—she was excreting the dry-cleaning chemical PERC (perchlorethylene). Elliott warned me to start slowly, since the heat from the sauna moves toxins stored in fat into the bloodstream, and if more are produced than my body could handle, I could poison myself.

  She also explained that the liver uses five different pathways in its second phase to clean the blood. Depending on your genetics and your lifetime experiences, some of those pathways might not be working so well. Pathway by pathway, she recommended supplements that could help.

  Diet, she said, was essential, and a faddish short-term cleanse wouldn’t cut it. I needed to eat a very clean, paleo-type diet with lots of organic vegetables and healthy fats, for life.

  Hesitantly, I asked about a detox approach my moldie friends discussed with particular enthusiasm, one that seemed so bizarre and disgusting that I could hardly believe anyone did it, much less that anyone had thought it up in the first place: coffee enemas.

  “Oh yeah! Lots of my patients do great with those!” she said, her face brightening. I asked her what on earth a coffee enema does—wouldn’t using water be just as good? No, she said. Nobody really knew exactly what they did, but one way or another, it seemed that coffee compounds supercharge the liver. She preferred the theory that the compounds cause the liver to excrete bile, which is the substance the liver puts the toxins into after it pulls them out of the blood. The liver works more efficiently, she said, when it produces more bile. But some people thought that the compounds in coffee increase production of the exceedingly important antioxidant glutathione, which the liver relies on for detoxification. Because mainstream scientists tended to sneer at the idea of coffee enemas, they had barely been studied. In any case, she said, they were very safe, and many of her patients found them to be a lifesaver.

  I asked her about testing—couldn’t I check and see if I really did have enough toxins in me to be causing problems? Not so easily, she said. For one thing, no one knew what levels were safe, and some people might be more vulnerable than others. Plus, commercial tests weren’t available for most toxins, so I’d have to find some research laboratory willing to do it for me, and she didn’t know of any. There was a commercial test for mycotoxins, but it was questionable and expensive—$700. Heavy metals were the one thing I could test for at reasonable cost, and while the test couldn’t determine total levels, it could at least give some indication of changes over time.

  She also pointed out that the results wouldn’t affect my treatment. My symptoms were enough to convince her that toxins were part of the issue, and the methods for getting rid of mycotoxins or heavy metals or pesticides were all the same. So beyond curiosity, there wasn’t much point. I decided to do the test for heavy metals, but nothing more.

  I left Elliott’s office warmed but uncertain. I liked her, but she spoke with an awful lot of confidence when I wasn’t sure there was a solid scientific basis for her claims. Of course, she had studied the experiences of many patients over many years, and that offered a valuable expertise on a different level. But I worried that her belief in the pernicious effects of toxins was so strong that she would interpret anything as supporting that view.

  I ran her suggestions by my moldie group, and they approved. So once again, I swallowed my discomfort and took another step down this path, ordering hundreds of dollars’ worth of supplements, buying a used sauna from one of Elliott’s patients, and picking up an enema kit at Walgreens. At least none of it sounded dangerous.

  One evening when I was feeling draggy and muddled, I brewed up some coffee and pulled out my enema kit. I sat on a towel on the bathroom floor, lubed the tip of the enema bag with oil, and, shuddering, slowly inserted it. I let the coffee stream in slowly, stopping each time my gut cramped its objection to this violation of the ordinary direction of flow. I breathed and twisted, telling my gut that everything was okay, even though neither it nor I were entirely convinced. When the cramping stopped, I reopened the valve.

  Once the bag was empty, I lay on the floor, feeling ridiculous, reading the news on my phone and checking the time over and over.

  Seven minutes in, I felt a sort of wave pass through me. My brain suddenly felt clearer, my body lighter. Wow. I didn’t know what had actually happened, but the sensation felt very much like some unpleasant substance had been filtered out of my body—though the suddenness of it was surprising.

  After my 15 minutes were up, I moved to the toilet, and, as the Web site I was following so delicately described it, “released” the enema. My nose revolted at the roasty-toasty coffee smell combining with that of shit. But there was no denying that I felt better—much better. Yet again, my crazy moldie friends had some pretty good advice.

  I settled into a pattern of doing coffee enemas first thing in the morning, since I typically felt muddleheaded and achy when I first woke up. Over and over, I was amazed to find that an enema (or two or three) brought me fully to the world again. I don’t know if this is really detoxifying me, but it sure as hell is doing something remarkable.

  I found this so astonishing that I spent some time looking for scientific papers about it. I found a reference to a study of coffee enemas in rats. Really? They were injecting coffee up rats’ butts? It turned out that they gave 15 rats suppositories with one of the many compounds that occur in coffee and found that their livers produced more bile afterward. Okay, I thought, but it’s tiny, it’s in rats, it’s not really a coffee enema, and it hasn’t been followed up on. Big whoop. A study of 11 patients with inoperable pancreatic cancer found that a program of coffee enemas along with bazillions of supplements extended their lives dramatically, but a follow-up study by an outside group catastrophically failed to replicate the result. That was pretty much all I found. So the benefits of coffee enemas were certainly scientifically unproven—but then, they were also almost entirely untested.

  I encountered emphatic denunciations of coffee enemas from Web sites claiming the mantle of being scientific, like Quackwatch and Science-Based Medicine. The latter said flatly, “Given the lack of benefit and potential harms, there is no plausible justification to undergo these treatments.” But when I investigated those harms, I found only about a dozen reports, generally from disapproving doctors. Several were about people who did so many coffee enemas they became dehydrated and electrolyte-depleted; one was about someone who used boiling water (cringe); another managed to puncture his colon (double cringe); a couple used amoeba-infected water; others were people so sick that the problem may or may not have been caused by the enemas at all. The only reports I found disturbing were two in which people acquired colon infections after doing a single enema—but given how many people seemed to be doing them, and how few reports there were of that, I couldn’t work up too much alarm.

  So basically, science failed to shed any light. And the evidence that the enemas made me personally feel better was extremely strong—though I had no idea whether the mechanism was indeed through detoxification. Over time, my preferred theory was that they somehow reduced inflammation, but with no scientific studies to go on, I was (ahem) talking out of my butt. I could have strengthened the evidence by testing it against a placebo (say, comparing it with a water enema), but with no objective way to measure improvement, it would shed no light on the mechanism. And frankly, I didn’t much care. The effect was so profound that even if it was a placebo, that was good enough for me—though if so, I did wish my brain had chosen a more convenient and less embarrassing treatment for its preferred placebo.

  The uncertainty took a toll on me, though. Each time I inserted that nozzle into my butt or sweated in a sauna or downed supplements with uncertain efficacy, I f
elt like I was taking one more step away from the world my science-writer friends lived in, and one step further into this new, warped universe.

  I decided that it was important to resist the sense of isolation I felt in pursuing such an odd course of treatment, so I invited friends out to my house to celebrate my spectacular recovery. I figured I’d hold it mostly outside to protect my house from possible contamination, and I asked friends to bring items like serving utensils and chairs that I no longer owned. I dubbed it my “Wake/Baptism Party”: We’d celebrate the death of the old me and the birth of the new.

  As I prepared for the party, I couldn’t help but think of William. We’d held a bunch of parties, and they’d always felt like a ratification of our life and relationship. Now, my house contained little indication that he’d ever been part of my life—nearly everything was lost in the Great Purge. A small, all-metal sculpture we’d gotten together in South Africa was one of the few exceptions. On top of that, William had come to feel bitter about the end of our relationship, and we barely had a friendship anymore.

  Tall weeds had sprouted between the flagstones of the patio. I pulled them to tidy up for the party, thinking about how I’d intended to plant creeping thyme there for a good decade. Heck, I’d intended to landscape the whole front yard for more than a decade. Some yellow-flowered chamisa bushes had popped up on their own, but otherwise, the yard was only dirt and weeds. So much love in this place, and so much brokenness.

  I had invited my ex-husband Geoff to the party, never imagining he’d come all the way from Minneapolis but wanting to include him. To my delight, he came. We hadn’t seen each other in five years, and he hadn’t been back to the house since shortly after we finished it more than a decade earlier.