Through the Shadowlands

by Julie Rehmeyer

  My sister Robin and I kept in touch regularly, and I felt her love. We’d grown up together until I was seven, when my mother sent her and my brother Ty to live elsewhere. I’d seen Ty only twice since then, but Robin moved back nearby when I was 11 and she was 19. She really felt like my sister, but our mother had stood between us when she was alive. I was my mother’s golden girl, while Robin tried and tried to make her happy and only rarely received her approval. I was always amazed and impressed that Robin didn’t resent me for my unearned, blessed status. After our mother died, Robin and I had slowly grown our relationship, but the web of connections between us certainly wasn’t strong enough to bear the weight of her supporting me through long-term disability.

  I’d never known my father, and he had died a few months before my mother did. I had always known that he had five other children, though growing up, I hadn’t even known their names. I’d finally tracked them down eight years earlier, a few years after Geoff and I had split up. It had occurred to me to ask Robin for their names—she had played with them as a kid—and she provided those she remembered (some of which turned out to be wrong).

  Armed with the names, I sat at my desk in my office, with its little octagonal window that looked out on the ponderosas and made me feel like I was in a tree house, and used the newly popular search engine Google to look for traces of them on the Internet. I managed to track down a phone number for my half brother Wes in Austin, and that evening, I called him up. He wasn’t there, so I left a message. As I spoke, I thought fast: What should I say? Does he know I exist? Will he even believe me? I settled on the vague statement that I was a family member trying to get in touch.

  A few hours later, I got a call from a very stunned Wes: He’d asked his maternal uncle who I might be and heard for the first time that his dad had had an affair with my mother in the years after Wes’s youngest sister, Tricia, had been born, and yes, there had been a child. Wes had never suspected it. Although his parents had separated a few months before his—our—dad died, Wes had seen their long marriage as a mostly happy one.

  We exchanged some basic information, and I felt a tentative warmth from him trying to reach its way through his shock—though he took pains to mention that his dad’s estate had no money in it, a possibility that had never occurred to me.

  Some months later, after more phone calls and e-mails, I visited him and his sisters in Austin. I knocked on the door of a giant tract house and a tall, blond-haired man opened it. “I’m not quite sure what to do here,” Wes said, “but I guess I should give you a hug.” And he wrapped me up.

  Wes sat me down at his kitchen table and pulled out the photo albums. For the first time, I saw a picture of my father, taken not long before he died: a graying man with a high, round belly and heavy-browed, deep-set, squinty eyes. My eyes, only gray. When Tricia came into the room, her eyebrows flew up: Our eyes were mirror images of one another, like his but dark. “I guess you are my father’s daughter!” she said.

  They began telling me stories, stories of my father, coming from these people I’d just met. Someone mentioned his favorite brownies, with caramel in the middle—I knew those brownies! My mother had made them, and it had been my job to unwrap the Kraft caramels, cellophane crinkling and a deep golden sweetness seeping from between my teeth as I chewed and worked. Another sibling dug out a letter my father had written to her son with an outline of his hand: “Someday,” he had written, “your hand will be this big.” Barely breathing, I held my hand against it. Mine was much smaller.

  For the next two days, I was swept into the hubbub of a big family so unlike my own, which had been mostly just me and my mom, until it was mostly just me. And at the end of the weekend, the whirlwind tossed me back out to my ordinary existence.

  Lying alone in my trailers these years later, I thought of my half siblings sometimes and wondered what it would be like if one of them got terribly ill. Would the others swoop in to help? Probably, but they’d grown up together, and they still barely knew me. We’d had occasional contact since then, but building those relationships would require continuing effort over years, effort I couldn’t make at the moment. In the meantime, I was on my own.

  One evening, a science-writer friend, Christie, was visiting Santa Fe, so a group of us got together for dinner. I pushed myself to go despite feeling poorly. One friend talked about his progress in his book about cancer, another described reporting her New York Times story about Navajos resisting a uranium mine. I mentioned a story I’d written for my Science News column about the mathematics of beer bubbles, but forming words took so much effort that I quickly quieted.

  I caught snippets of their accounts of future projects and goals and frustrations, but I couldn’t stay tuned in long enough to follow what they said. My friends seemed to be floating away from me on this great river of conversation and stories and success, while I was drowning in the shallows. I wondered when I’d next work on a story I deeply cared about. I watched their faces, trying to catch when to nod or laugh.

  I noticed myself sagging lower and lower in the chair, head propped on hand, and I finally thought, Ah! Low blood pressure! Must have salt! I surreptitiously poured some into my hand under the table, tossed it down my throat when my friends were distracted, and slugged some water down.

  It helped some, but I could still feel my energy sinking, sinking, sinking. I tried again: salt under table, toss in mouth, water. The Gatorade miracle seemed to be fading, and I wondered if perhaps my kidneys had gotten more efficient at disposing of the extra electrolytes. The conversation continued to drift past me, and I decided it was time to give up. I made my apologies and left.

  As I walked away, my left leg started to drag, and I staggered down the stairs, supporting myself against the wall and pushing my leg down with my hands, step by step. Just a block and a half to the car, I thought. You can do it, Julie. But my steps were getting shorter, the grunts I couldn’t suppress louder. I had to cross a road, and though I had barely noticed the slope in roads for drainage when I was healthy, that grade now felt like a mountain. I got across the road only to face the intimidating slope of a sidewalk cut. My steps diminished to a couple of inches apiece, an inch, and finally, nothing. I was stuck.

  I leaned against a building and caught my breath. My heart rate monitor was beeping stridently, warning I had exceeded safe limits. I took a deep breath and considered my options. I guess I need some help. I called one of my friends but got no answer. I started looking for the next phone number.

  A very young woman in a restaurant uniform came out, face earnest, carrying a chair from the restaurant. She urged me to sit down, asked me how she could help, volunteered to drive me home, told me she didn’t mind if she got fired for disappearing from her job as a bus girl. Her intensity and kindness overwhelmed me. My eyes sprang tears, which belied what I wanted to say: This is normal for me, no big deal really. I just need to get one more block back to my car and then I’ll be fine, and my friends can help. No need for concern.

  I stammered out, “Look, the gray hair of the man there, up on the balcony, he’s one of my friends, right there!” I persuaded her to let me call Christie, but then I struggled to find the right number. My brain felt like it was short-circuiting and might set on fire as the nice young woman kept talking. My phone started calling Christie’s number, but it had automatically chosen her work number. I stabbed at the phone to make it stop, it kept ringing, the bus girl was telling me how she’d do anything I needed, how she knew what it was like, how she just had to do something when someone was hurting. I finally managed to make the phone hang up.

  Just before I asked the young woman to go upstairs to get one of my friends, my phone rang. Apparently Christie’s work number was her cell phone number. Yes, absolutely, she said, she’d come help.

  The young woman told me that her mother was sick, and that’s how she knew what it was like. She started crying, and I gave her a hug from the chair, thinking back on my own terror when my mother w
as dying. The girl was so tiny I felt as though my arms could wrap around her twice. When Christie arrived, the girl and I were both teary-eyed, in an embrace.

  Christie helped me up from the chair, and I saw the shock and fear on her face when I couldn’t stand up straight and could barely move. The only reassurance I could offer was through specific instructions: Push forward on my lower back, no, a little harder, yes, that’s it. In the hubbub, I barely gave the young woman a good-bye, absorbed by the effort of moving my legs. I swore later that I’d go back and thank her, but I never did.

  After I’d made it home, settled back in bed, and curled up around Frances, I thought, Well, you chose it, Julie. You chose to be alone, and this is part of that reality. Better get used to it.

  PART 2

  SOLITARY

  CHAPTER 8

  RAGE

  During the long days I was stuck in bed after I returned to Santa Fe, I started dipping into the online patient forum from time to time. I didn’t find it nearly so off-putting as I had previously: Having disintegrated so thoroughly myself, I now found their suffering familiar rather than frightening.

  I dug around, looking for an idea that could make me feel better, but I still found the treatments I read about patients pursuing uncomfortably unscientific. I mostly found myself drawn to threads about the PACE trial. That was the study from the previous February that had so puzzled and upset me, the one that had claimed that psychotherapy and gradually increasing exercise could effectively treat or even cure ME/CFS.

  I had tried to put the trial out of my mind in the previous months, hoping it would fall into obscurity just as other, similar scientific studies had. But on the forum, I read about how the study had worldwide influence: Web sites for the CDC, the Mayo Clinic, UpToDate, and Kaiser, for example, all highlighted cognitive behavioral therapy (CBT) and graded exercise therapy as the only proven treatments for ME/CFS.

  As absurd as that seemed to me, I was startled by the intensity of the fury the study inspired on the forum. It seemed that for many patients, the trial had acquired the wickedness of Mordor, a locus of evil and hate focused on them. I can’t believe these scientists are villains in a Tolkien novel.

  The anger grew especially intense on any mention of the trial’s principal architect, a fellow named Simon Wessely. On the patient forum, his name often came attached to some condemning adjective: “evil,” “warped,” “morally bankrupt.” A wee bit over the top, maybe?

  Then I read some of his articles and speeches. He didn’t quite say that ME/CFS was all in our heads, but he came very, very close. He said that ME/CFS and psychiatric disorders had pretty much the same causes, with the main difference being that ME/CFS patients had “a powerful lobby group that dislikes any association with psychiatry.” ME/CFS patients turn to doctors for “validation,” he said, and “once that is granted, the patient may assume the privileges of the sick role: sympathy, time off work, benefits, etc.” Patients look for physiological explanations for their illness, such as a virus, he said, because “it preserves self-esteem.” And doctors should be wary: “It is important to avoid anything that suggests that disability is permanent, progressive, or unchanging. Benefits can often make patients worse.”

  My heart pounded as I read.

  At the same time, if directly asked, he vigorously denied that ME/CFS was “all in your head.” No, no, he said: It’s in your brain. Just like mental illnesses are.

  I found all this puzzling: Depression is a mental illness because its primary symptoms are, well, mental, even if those symptoms are rooted in physiological abnormalities in the brain and body. If ME/CFS had physical causes and physical manifestations, what possible sense did it make to argue that it was essentially psychological?

  When I beat through the clouds of obfuscation, Wessely’s positions on ME/CFS seemed to boil down to these: Patients need to realize that their continuing symptoms are a manifestation of their own psychology and poor levels of fitness, so they have the power to change them. The more they believe that they have a physical illness, the less likely they are to recover. Their path to wellness is to get over their fear of exercise, quit seeing problems as catastrophes, stop focusing on their symptoms, and give up the search for physiological treatments.

  So while doctors should be empathetic, they should refuse to get dragged into a counterproductive search for physiological problems. Instead, they should steer patients toward CBT and graded exercise, since both will train them to ignore their symptoms and get active. Sadly, Wessely admitted, those treatments might not cure everyone, but they were the best medical science had to offer. And one shouldn’t expect better treatments anytime soon—since ME/CFS is a brain problem, we’ll have to wait until we’ve cracked the functioning of the brain for that.

  Every last one of those statements struck me as wrong, offensive, and damaging.

  I found it even more galling to read Wessely evade criticism with misleading descriptions of his own position. For example, in a 2002 article in the Guardian about a “war” between ME/CFS patients and his psychiatric camp, Wessely said, “Oh, it’s years since anyone has denied there is a biological basis to CFS. That’s just tilting at windmills. We have been most active in looking at the biological basis of CFS.” I knew from his writings, though, that the only “biological basis” for ME/CFS Wessely believed in lay in the brain—that is, he considered ME/CFS a real mental illness, just like depression or schizophrenia.

  But the Guardian writer ended his piece declaring the differences between the two camps scant. He wrote, “All the combatants have said how hurt and upset they’ve been by enemy action. Wessely himself recently issued a call for some sort of peace. So what are they all waiting for?”

  I, for one, wasn’t ready to make peace with Wessely’s view of the illness. And Wessely’s philosophy was at the heart the PACE trial. The rage of the patients on the forum no longer seemed so peculiar.

  But all that only made me more puzzled about the trial itself. Given how ludicrous the PACE researchers’ theory was, shouldn’t the trial have crashed and burned? Or—I forced myself to admit this possibility—did their success show that they were on to something? Perhaps their theory was bunk but their treatments worthwhile. After all, science is supposed to get solid answers, even if the scientists happen to be assholes.

  The only way to find out was to dig into the science. On a day I was feeling especially clearheaded, I started reading the Lancet study. I also dug deeper into the hundreds of posts on the forum dissecting the study’s science. To my surprise, I was dazzled by the quality of the analysis: This was a community of serious citizen-scientists unleashing their full geekitude upon this study. And geeks were my people.

  The first problem the forum geeks pointed out was pretty amazing: It wasn’t clear that the patients in the trial even had chronic fatigue syndrome! Participants were only required to have six months of disabling fatigue as a primary symptom—the very definition Klimas had criticized as overly broad. None of the other symptoms ordinarily required for an ME/CFS diagnosis, including brain fog, pain, blood pressure regulation problems, or sleep problems, were necessary—not even problems after exercise, which most experts considered the hallmark of the illness. And while patients with many fatiguing illnesses were excluded, it was okay to have major depression, even though that alone could explain the fatigue, and depression was well known to respond to exercise and CBT.

  But that was just the beginning of the problems. The forum geeks pointed out that suspiciously, the only sign that CBT and exercise had helped patients was that the patients said they felt a bit better. Objectively, though, they hadn’t improved at all: They hadn’t gotten back to work, hadn’t gotten off welfare, hadn’t gotten more fit. Even the patients who exercised for a year did no better on a fitness test, and while they were able to walk slightly faster than at the beginning, they would still have lost a race with a patient in heart failure, severe multiple sclerosis, or chronic obstructive pulmonary disorder. />
  Even more suspiciously, the researchers then pooh-poohed their own objective measures as flawed or irrelevant. It was the subjective self-assessments, they said, that really meant something. After all, they pointed out, how else can you tell how tired people are, other than asking them? Okay, I thought, but shouldn’t the researchers acknowledge that the lack of objective improvement is disappointing, to say the least?

  Furthermore, when I looked at how much better participants said they felt, it struck me as fairly pathetic. Patients started out feeling pretty terrible: They rated their own physical function at less than 40 on a 100-point scale that any moderately healthy person would ace. At the end of the trial, CBT and exercise improved their scores by fewer than 10 points. So a typical patient reported that he still couldn’t vacuum his house, climb more than one flight of stairs, or walk more than a few blocks—but he struggled a little less carrying in his groceries and, maybe, could just manage a single flight of stairs when he’d had to rest in the middle before. If I’d put a full year of effort into therapy, I think I would have felt pretty disappointed.

  And even these slight improvements were suspect. I imagined myself as a participant in the trial: I come in and I’m asked to rate my symptoms. Then, for a year, I’m told that to get better, I have to pay less attention to my symptoms. Then I’m asked to rate my symptoms again. Won’t I feel a lot of pressure to say I feel a bit better, in order to do as I’m told, please my therapist, and convince myself I haven’t wasted a year of effort?

  The irony, the geeks on the forum pointed out, was that the researchers’ modest results in fact offered compelling evidence against the theory that it was psychological problems and deconditioning that kept ME/CFS patients sick. After all, the researchers had given patients the best treatments they could to address those problems, and it had barely helped. CBT and exercise did no more for ME/CFS than for illnesses like lupus, multiple sclerosis, and fatigue from cancer treatment, all of which are known to be primarily biological in origin.