Through the Shadowlands

by Julie Rehmeyer

  The next stop was a CFS doc who hadn’t turned up in my earlier search, one with the stamp of the UC San Francisco teaching hospital. But the doctor turned out to be in the “integrative medicine” department—which, I soon realized, meant that he was integrating standard medicine with the not-so-standard kind. He listened so attentively and warmly that I couldn’t help but like him. But ultimately, he recommended almost all the same supplements as Rosenbaum—and added that he’d take a “shamanic journey” after our appointment to see what else he could recommend. He never got back to me, and I felt cheated. If he wasn’t going to have anything new that was scientifically grounded to offer me, hey, I at least wanted my damn shamanic journey! Oddly, I felt less uncomfortable with that absurdly unscientific notion than I did with supplements. I knew precisely nothing about shamanic journeys, so who was I to say it was bunk? At least it didn’t claim to be scientific—and who knows, he might have been able to tell me something thought-provoking.

  I dug into the CFS research literature myself, and I quickly realized why the doctors were so useless. The research offered nothing solid to go on. Some researchers focused on “latent infections”—viruses that lots of people get and recover from, but that apparently got fired up again in CFS patients. Rosenbaum’s tests had indicated I had some, but then, healthy people sometimes had those too. Other CFS researchers believed that some unknown virus or retrovirus must be actively infecting patients. A reasonable enough theory, I thought, for the patients whose condition had started with a sudden flulike illness, but mine had been a gradual decline with no apparent infection.

  I read about a bizarre panoply of other abnormalities, vague types of immune dysfunction and strange cardiac irregularities and gut problems and nervous system issues, but none of these anomalies had the cut-and-dry quality I expected of medical science. Either the abnormalities had no clear treatments, or they might not even be abnormalities, or the proposed treatments were untested and suspicious-sounding.

  As far as I could tell, saying that I had chronic fatigue syndrome meant little more than that I was tired and sick and no one knew why. I was on my own.

  CHAPTER 4

  THE SPLIT BETWEEN THE WORLDS

  It was a hard thing for me to absorb: Doctors weren’t going to help.

  It wasn’t just that there was no magic pill to fix me. Plenty of other illnesses couldn’t be fixed with magic pills—but at least they had legitimate specialists who would try to help. Chronic fatigue syndrome, it seemed, didn’t count as a “real” illness. The problem was less that people explicitly asserted that CFS was psychosomatic—my friends never said that, and only that one doctor I saw had discussed the possibility—and more that it lacked all the trappings of legitimacy, with proper doctors and blood tests and researchers and conferences and solid information on Web sites. If you told people you had cancer or multiple sclerosis or lupus, you got lots of sympathy. If you said you had chronic fatigue syndrome, you often heard, “Oh yeah, I’m tired all the time too.”

  I tried to avoid the name, saying something vague, like “Well, doctors haven’t really figured out what’s going on with me. Seems to be some strange neurological something.” I might add, “Some have called it chronic fatigue syndrome, but that doesn’t really mean anything.” After all, it wasn’t at all clear that whatever was broken in my body was also broken in the bodies of other CFS sufferers. The only thing calling my illness “chronic fatigue syndrome” seemed to add was a stain of stigma, as if the name provided a window into my soul and displayed some moral failing within me.

  I focused on learning to manage my illness, living richly in spite of it, and looking for ways to make myself feel better on my own.

  I read online patient boards, hoping to learn something useful from my fellow patients, but I was put off by all the ridiculous treatments people discussed seriously: A woman wore magnets in her underwear to balance her hormones; a man was shining a red light up his nose; someone even contemplated drinking cow urine. Even worse was the endless, frightening misery. These people aren’t like me. This won’t be my future.

  Even the hopeful stories, when people reported that plausible-sounding treatments were making a difference for them, put me off. None of these treatments seemed to work consistently across patients, nor did I see patients recovering and resuming their lives, only feeling a bit better for a while. That’s pretty much what I would have expected to see if none of the treatments were really doing anything and the improvements were random upswings that patients attributed to whatever treatment they happened to be trying at the moment.

  Even with that intellectual skepticism, I felt the emotional pull of these stories: Maybe that would work, maybe, maybe! In some ways, this frightened me much more than the ridiculous treatments, because I could imagine following that hopeful tug and then gradually getting sucked into one of the cliques that formed around a particular theory or treatment, sucking in all available evidence and interpreting it in support of their theory, repeating unproven claims so often they began to feel like facts.

  So I shut my computer and analyzed my experiences for myself. I scoured my activities, my diet, my environment, coming up with endless theories about what might have caused the downturn. For a couple of weeks, cutting out gluten seemed to help—hurrah! But then I got worse again. Still, I thought, maybe the downturn was caused by something else and cutting out gluten really was helping—you never know. I tried gorging on bread and didn’t have any problem immediately afterward or the next day, but I felt lousy the day after that—could I have had a delayed reaction? Or maybe the problem wasn’t gluten, it was milk, or sugar, or nightshades, or all of the above, or something else entirely.

  I kept up the dietary experimentation, but I had lots of nondietary ideas too. Maybe, I thought, I needed to rest absolutely as much as possible, or to build up really gradually, or to just get over myself and stop worrying so much about overdoing it. Maybe I wasn’t getting enough vitamin D—or maybe my new vitamin D regimen was causing me problems. Lying in bed after one crash, I pondered how I walked home in the cold just before I crashed—could that have caused it? But I’d also been upset that day about a story I’d written that had gotten killed, and I’d gone to a concert that turned out to be really loud and over-stimulating, so maybe it was one of those things.

  But the truth was, I couldn’t find any compelling patterns that predicted when I was strong and when I was bedbound. I felt as though my illness might as well have been controlled by the Greek gods, creatures more irrational and capricious than the human mind can comprehend.

  Friends constantly mentioned their ideas about things I should try: green smoothies! a paleo diet! this supplement, that supplement! quacky-sounding doctor number one or number two or number three!

  One friend suggested a doctor he knew who, he said, had cured every single person with CFS who had gone to her. Yeah, right, I thought. But my friend persisted, and I could see how it hurt him to believe my stubbornness alone was keeping me sick. So I capitulated. His doctor recommended various supplements I hadn’t tried that seemed fairly harmless, so I took them for a few months. In the end, they had no apparent effect.

  My friend soon pushed his next cure-all on me, but this time, I firmly told him I wasn’t interested. He clucked his tongue at me. “You’re pretty stuck,” he said. “Mainstream doctors have nothing to offer, and you’re closed to alternatives, so I guess you’re just going to stay sick.”

  I sputtered. I tried to explain that running off after every quack treatment my friends pushed on me just made me feel desperate and hopeless. The reality was that nobody knew what to do about this fucking disease—if they did, I would have heard about it by then. I figured that my life would be richest—and I’d also be more likely to get better—if I accepted that reality and dealt with it, rather than running from it and imagining that the next random treatment some friend recommended was going to magically cure me.

  And anyway, I didn’t feel stuck,
I told him. I felt like the way forward lay in cultivating a curiosity about my illness, simultaneously enjoying my life as it was while scrutinizing my experience to find ways to make things better. Also, although I certainly wasn’t a Christian Scientist as my mother was, her religion had fueled the belief in me that diligent attention to one’s internal feelings and attitudes was the best place to start in solving a problem, allowing one to act more powerfully in the world and sometimes opening the door to change in ways you couldn’t predict.

  My friend frowned. “Okay, okay,” he said. “It’s your life.”

  Fortunately, my life was mostly pretty rich. Occasionally, I was strong enough that William and I could bike around Angel Island or walk down to Stinson Beach; sometimes I was stuck in bed; and most of the time, I was in-between, carefully regulating how active I was so that I could do the things I most cared about.

  I still worried that my illness felt like an imposition to William, but our day-to-day life was undeniably sweet. We moved out of his two rooms in a shared house and into a proper apartment together. We both worked from home, and we’d check in throughout the day, bringing one another little snacks or consulting about some work puzzle. He composed music, and I’d hear the strains of his guitar coming from his office. We went to lectures by leading lefties that he admired and that I usually found uncomfortably radical, and we’d gently argue about them afterward. And my career was growing nicely—I’d gotten hired to write a weekly math column for Science News, and I was having success in placing stories in other science magazines as well.

  But the illness also intruded, even frighteningly sometimes. Walking home from a café one day, I found myself limping a bit, then limping a lot, then barely able to move either leg. Finally I stood motionless on the sidewalk, as stuck as a mouse in a glue trap.

  I only had four blocks to go, but it might as well have been 400 miles. William was gone for the day, so I couldn’t call him for rescue. Fuckety fuck fuck fuck.

  A fellow I’d seen before was out cleaning his car and looked up, hearing my groans as I struggled to walk. Horror flashed across his face as relief flashed across mine: I’ll bet I can talk this guy into giving me a ride. He doesn’t look like a rapist.

  He quickly agreed to give me a ride home and helped me into his ancient Rabbit. The backseat was filled with car batteries—he’d converted it into an electric car. I got him talking about this, deflecting the obvious questions he might otherwise ask.

  Finally he said, “Uh, you okay?”

  “Yeah, well, this just comes on sometimes. They don’t really know why.” I avoided those toxic words “chronic fatigue syndrome,” not wanting to lose his sympathy.

  When we got to my house, I couldn’t bring myself to ask my rescuer for help up the stairs to our second-story apartment, so I thanked him from outside. Once I closed the door, I sat on my butt and lifted myself with my arms, stair by stair. Then my arms failed, so I turned on my belly and slithered, bellowing like a woman in childbirth with each wriggle, finally flopping, spent, at the top.

  This, I thought as I panted, with my face mashed into the carpet, this blows. This really blows.

  I discovered my most effective management tool through serendipity, when William and I visited a hot springs resort in the Sierras. As always, I’d imagined that I’d catch an upswing and be able to tramp through the snow under the great dark pine trees, but in fact, short walks were the best I could manage, and my paralysis came on several times. We hung out at the hot springs and in the body-temperature pool next to it, where I listlessly floated on my back in the womblike embrace of the warm water. I looked at the trees towering above me, imagining the energy flowing through them into the sky, their sap traveling a hundred feet up through their sturdy trunks despite the freezing cold. Every tree felt like an unattainable miracle of verticality and life force.

  After paddling around for a bit, I prepared myself to stagger back to the locker room—but when I got out, the problem had disappeared. Thanks for the break, Greek gods, I thought.

  The next time I was paralyzed, I floated in the warm pool again, and again, I was able to walk. A third time too. Hmm . . .

  I didn’t have a warm pool handy at home, but I thought that maybe the warmth wasn’t essential to the magic—after all, a warm bath had never helped. So when we returned home, I decided to try going swimming during the middle of an episode. I staggered and groaned my way to the pool using a walker, dragging my legs forward with my hands, feeling ridiculous as the Speedo-clad athletes gave me startled looks. I should have used a wheelchair, but that required a level of acceptance of the illness I resisted.

  When I reached the pool, I collapsed into the water. The weightlessness in the water felt reassuringly good, though as I looked at the impossibly faraway end of the pool, I thought, This might be the stupidest thing I’ve ever tried. I reminded myself that I didn’t have to swim that whole distance. I put my goggles on, pushed feebly off the wall, and pulled my arms in a slow breaststroke.

  After just a few strokes, a wave passed over me, as if a current traveled from my brain down through my body and filled me with the power I’d been missing. Holy shit! My kicks began propelling me forward, and my arms moved fluidly. I reveled in the delight of being able to move freely, forcing myself to stop after five laps to make sure I didn’t overdo it.

  Then I lifted myself from the water with ease, folded up my walker, and walked smoothly away. As soon as I got back to my phone in my locker, I called William, giddy: “It cured me!”

  This turned out to be a reliable miracle. The front desk workers and lifeguards no longer looked alarmed when I lurched past them, groaning. Once, I stopped in the hot tub first and chatted with a garrulous gentleman who had watched me stagger over. I explained to him that once I swam I’d be fine, but he barely noticed my words, continuing his flirtatious banter without a hitch until I grunted my way to the pool. When he saw me get out of the pool a few minutes later, walking flawlessly and carrying my folded-up walker, he hollered, “Look at her! Did you see her before? She couldn’t walk, and now she’s cured! She’s a mermaid!”

  The mysterious swim cure generally lasted the rest of the day, but while it could stop a paralysis episode, it couldn’t prevent one. That meant that I had to keep staggering to the pool while semi-paralyzed, and getting to the pool in that state was the hardest physical task I’d ever done.

  I looked for a medical explanation for what swimming might be doing to my body—it’s got to be an important clue about what’s wrong with me—but I never found anything, and doctors I asked were stumped.

  I made an observation that led me to come up with my own theory: When I was having trouble walking, I found it oddly easier to move if someone pushed against my leg, providing resistance—I thought that might explain that first neurologist’s claim that my strength was normal, even as I lay unable to shift my legs on his table. Perhaps, then, I thought, the uniform resistance of the water somehow helped reset my brain’s ability to communicate with my legs. That would also explain why a bath had never helped: There wasn’t enough water to provide much resistance.

  But the swimming effect was so bizarre that I also wondered if I wasn’t just crazy. Could that gait disorder specialist have been right about conversion disorder after all?

  While I never believed that my illness could truly be all in my head, my childhood grounding in Christian Science made it natural to view my illness in a psychological and spiritual context and to hope that working on that level could support my healing. So despite my irritation with my therapist about the quack doctor he’d so aggressively pushed on me, I threw myself into our work together.

  We started by discussing the most basic emotional fact of my childhood: I grew up believing that I had been brought into this world to save my mother.

  As a child, I could have articulated neither that duty nor what threatened her, but my responsibility was as apparent to me as my dirty blond hair or skinny, coltish legs. Somethin
g wasn’t right with the person I was most devoted to in all the world. Throughout my childhood, my mother didn’t have friends, or a job, or a husband. She’d been alone since she’d left her husband six months after I was born, taking me and my two siblings with her; my father, with whom she’d had an affair during her marriage, had chosen to stay with his wife and five other children. My mother relied, somewhat precariously, on family money to pay her bills. She spent hours every day sitting on her bed playing solitaire. She sometimes careened into towering, inexplicable rages. When I was seven, she sent my older brother and sister away to live elsewhere, leaving just me and her in the house together.

  As far as I could see, I was the person to fix whatever undefinable thing seemed to be ailing her. Certainly, no one else seemed to be volunteering for the job. How to accomplish this wasn’t so obvious, though.

  I quickly realized that people in the outside world weren’t likely to help, because I couldn’t talk about it with them at all. One morning when I was seven, I arrived at school in tears. A beautiful fifth-grader—royalty!—named Lupe wrapped her arm around me. As we walked down the open-air walkway of our San Diego school, Lupe asked me with maternal gentleness what was wrong. I snuffled that my mom was mad at me, and she asked me why.

  I was astounded. She thought that question would be answerable? I realized she expected me to say something like “I forgot my lunch and we had go back home to get it” or “I was slow putting my shoes on.” It wasn’t anything like that. My mother was mad at me because—well, I barely knew myself. Because she had a headache and that meant my “thought was wrong,” or something like that, something I knew would sound ridiculous to this good-hearted girl. Lupe’s kind face and the sweet weight of her arm around me, I realized, existed in a different realm from my challenges with my mother.

  So I had to figure it out on my own, just as I would many years later with chronic fatigue syndrome. The two experiences had very much the same quality for me, lying outside language, outside acceptability, outside any structure in which I could expect to receive help or even understanding. I spent time with Chris talking about the strategies I had used as a kid for dealing with my mother, because I recognized that I would naturally be inclined, for better or worse, to think about my illness in similar ways.