Through the Shadowlands

by Julie Rehmeyer

  Psychotherapy? Are they saying this is a mental problem?

  Reading further, I learned that the study claimed that both psychotherapy and a gradual increase in exercise could make CFS patients feel significantly better. The article continued:

  While this may sound like good news, the findings—published Thursday in the Lancet—are certain to displease many patients and to intensify a fierce, long-running debate about what causes the illness and how to treat it . . .

  The new study . . . is expected to lend ammunition to those who think the disease is primarily psychological or related to stress.

  The article noted that the type of psychotherapy the researchers used, a particular form of cognitive behavioral therapy (CBT), aimed to change the psychological factors “assumed to be responsible for perpetuation of the participant’s symptoms and disability.”

  I felt the heat rise to my face. Oh my god, what will my editors think? I’d been juggling deadlines, trying to tell my editors enough so they’d cut me some slack but not so much to alarm them. I imagined them reading the article and figuring: Ah! Julie’s not getting me that story because she’s fucked in the head! Too lazy to get out of bed and exercise. Science has proven it.

  I groaned. I’d worked with Chris for seven years during my illness, and while he’d helped keep me from losing my mind as my body deteriorated, he couldn’t stop me from losing my health. I’d finally quit working with him when my health was good and William agreed to have a baby, so I felt like my life was going well (snerk!).

  As for exercise, my very first strategy when I’d started getting sick was to swallow my pride, start with only slow, short runs, and gradually build up. It hadn’t worked, though I’d tried it again and again. If this study is right, shouldn’t I be cured by now?

  At the same time . . . jeez, the Lancet. That was about as good a medical journal as there was. Plus the study, nicknamed the PACE trial, was enormous by the standards of chronic fatigue syndrome: 641 subjects, $8 million. Could there somehow be something to this?

  The study was everywhere: CNN, NPR, the BBC, Reuters. Some articles were far more effusive than the New York Times had been: “Got ME? Just Get Out and Exercise, Say Scientists,” declared the Independent, using the acronym for the international name of the disease, myalgic encephalomyelitis (which I’d only recently learned). “ME Sufferers ‘Better Pushing Their Limits,’” proclaimed the Times of London. Many reported that the study showed that 30 percent of patients who received cognitive behavioral therapy or gradually increased exercise had a full recovery. Recovery!

  The New York Times article was the only one that expressed reservations about the study. Although it presented the trial at face value, it pointed out that researchers defined chronic fatigue syndrome in varying ways, and that the PACE trial had used a broad definition that could include patients who were depressed and didn’t have CFS at all. And the article added, “At least one survey has found that exercise therapy can significantly worsen many patients’ symptoms.”

  Um, yeah, I thought, remembering my unfortunate hike a couple of months before that was no greater than other hikes I’d been doing at the time. And I knew that at government clinics in the United Kingdom, cognitive behavioral therapy and exercise were pretty much the only treatments offered to patients. I’d heard of many patients who went from moderately ill to bedbound under that regime and who complained that they were browbeaten into accepting that they weren’t really physically ill. Patients were sometimes threatened with loss of disability payments if they refused these treatments, or even thrown into psychiatric hospitals against their will.

  And the study completely contradicted what I’d learned through hard experience: I had to stop as soon as I felt the slightest bit tired. It didn’t matter if I’d swum for 10 minutes without difficulty the day before—if I felt tired after five, it was stop or else. Steadily increasing my exercise regardless of my symptoms was a surefire path to disaster, and every patient I’d spoken with had learned a similar lesson.

  I fiddled with my phone to get to an online patient forum, feeling annoyed at the tiny screen but far too exhausted to sit up to use my computer. I found patients who had zoomed past my befuddlement straight into fury. “I’m losing it right now,” wrote one patient. “This obscene bullshit is just killing me.”

  The background on the study only made it worse: The theory driving the PACE trial was that something happened to CFS patients initially—perhaps a bad bug, a pregnancy, or maybe even just being a workaholic—and they got out of shape. Then, when they tried to exercise again, they found that it didn’t feel like it used to. Rather than working gradually and consistently to get back in shape, these patients either didn’t try to exercise at all or they pushed their bodies too hard, bringing on fatigue and pain. Either way, they became convinced that they had a dread disease, so they grew afraid of exercise, focused excessively on their symptoms, and, as a result, remained unfit. Along with that came more fatigue and other symptoms, perpetuating a vicious spiral.

  The solution, the team said, was simple: CFS patients just had to exercise. They needed some guidance to help them start slowly and build up gradually so that they didn’t overdo it, because then they’d get scared silly when they got sore and tired. And perhaps patients needed some therapeutic help to get through their fear about it, to focus less on their symptoms, and to overcome any associated depression. The PACE trial, the researchers claimed, had proven that they were right.

  It wasn’t just in the United Kingdom that researchers were pursuing psychological explanations for the disease: I’d been ignoring a steady stream of similar but less well-publicized research in the United States. Just a few months before, for example, a study by the Centers for Disease Control and Prevention (CDC) claimed that 29 percent of CFS patients had a personality disorder, compared with just seven percent of the general population. It was important for doctors to understand this, the paper concluded, because “this might be associated with being noncompliant with treatment suggestions, displaying unhealthy behavioral strategies and lacking a stable social environment.”

  When I read about that study, I thought, Fuck you! Let’s give you a horrendous illness, deny you decent medical care and disability payments, have your friends and family tell you you’re crazy, and then see how your mental health fares! Comparing CFS patients with healthy folks was absurd—they should have been comparing them with other chronically ill patients. And indeed, a 2003 study in the Journal of Psychosomatic Research compared CFS patients with those with multiple sclerosis and found equal rates of neuroticism and depression (which isn’t the same as a personality disorder, but still . . . ).

  As absurd as they were, these US psychiatric studies were small and obscure. I found them irritating, especially because they were a dreadful waste of money—but hey, there’s plenty of lousy research on all topics. At least they didn’t get published in top medical journals or garner worldwide headlines.

  But the PACE trial did.

  I felt sick. I’d heard so many stories from other patients about their friends and families not believing they were really ill, and I’d always felt lucky that had never been a problem for me. I wasn’t immune to the corrosive effect of the skepticism focused on my illness—I could hear even in my own head a sense that my illness didn’t quite measure up. But I’d never been told that I just needed to exercise and stop obsessing about my symptoms. It was painful to hear from anyone, but from the New York Times? The Lancet? It felt like science itself—my refuge from craziness and irrationality and stupidity—had turned on me. And my science-writer colleagues were cheering them along.

  I put my phone down again and decided to put the whole thing out of my head. My priority at that moment had to be taking care of myself, not worrying about some dumb study. And, after all, I knew perfectly well that occasionally science goes wrong—though this flub was more dramatic than I was used to. Regardless, I just needed to get through the days until I saw Klimas
. Through her, I hoped, I’d find some good science to help me.

  CHAPTER 6

  THE MIRACLE

  As William and I flew to see Klimas in Miami, I was exhausted by the effort of keeping myself upright in my seat. I was also exhausted, I realized, from the effort of dealing with my own terror. For all these years, I’d kept my life and dreams going in spite of being sick, but my best efforts weren’t enough to accomplish that anymore. Now it wasn’t just my future children that were at risk—it was my ability to have a meaningful life of any kind. I wasn’t merely looking for some small incremental improvement, or the simple reassurance of having a doctor behind me. I was looking for a miracle, plain and simple.

  And deep in my gut, I didn’t believe I was going to get my miracle. CFS patients as sick as I was rarely improved dramatically, as far as I could tell. New, relatively mild cases often spontaneously resolved. But by this point, more than a decade had passed since the day I’d struggled to walk up the path to my house and first thought that perhaps I was sick.

  Part of the reason I was so frightened was that my previous efforts at miracle generation hadn’t worked out so well. Late in my sophomore year at St. John’s, while my mother was a graduate student, she came down with what seemed to be a flu. After nine days, she wasn’t feeling better, and she confessed to me that she hadn’t pooped that whole time. I persuaded her to go to the nurse at the college, and the nurse sent her to the hospital. That night, my mother was on the operating table, and the next day, we learned that colon cancer had spread through her abdomen.

  My mother was serene: She believed that God would save her and that this miraculous cure would prove that she’d lived her life right. I didn’t believe that. Instead, I believed that I would save her—that had always been my job, after all. I had faith that I’d find the way forward, just as I had in the past.

  I started working on the external level, insisting that she do chemotherapy. She agreed, but only for my sake, and as soon as she found a crack in my resolve to force her, she stopped. Within months, blood tests indicated the cancer was growing wildly. I couldn’t summon the will to fight with her about it further, and it was probably too late for chemo to beat the cancer anyway.

  So I started thinking on an internal, psychological level. My mother’s illness felt oddly unsurprising to me, like it flowed naturally out of how stuck she was. Despite all the changes in her life since she’d moved to Santa Fe, I knew the prospect of running out of money terrified her. She had an immense internal power but few external skills, and help wanted ads rarely called for such a combination. She wasn’t willing to mess around in some puny job—she wanted to be her full, grand self, right away. Neither of us had great ideas about how to make that happen, and she was running out of time.

  Cancer provided a way out of that mess—but not one I was very happy about. Her complacent expectation that God would rescue her felt to me like a willingness to leave her problems, and me, behind.

  Figure it out! Get a job! Do something! I wanted to yell at her—except that the notion of yelling at her was so preposterous that I forced the urge down nearly before I was even aware of it. I just couldn’t help but believe that if she’d find the courage to truly face her situation and come up with a solution, maybe her body would manage to fight the cancer too.

  I didn’t talk much about my theory, knowing it might sound to others like the kind of magical thinking a distraught 18-year-old could easily take solace in. But then I read a book that backed me up: Cancer As a Turning Point by the psychotherapist Larry LeShan. LeShan argued that while thoughts and feelings neither cause nor cure cancer, they do strongly affect the immune system. As a result, working on a psychological level could help marshal the body’s own self-healing abilities. He backed these assertions up with reports of dozens of studies along with his 35 years of experience both as a researcher and a clinician.

  LeShan reported the stories of patients he’d worked with who had turned their lives around and beaten their cancer in the process, or at least given themselves extra time. Each of these stories was reported with a combination of deep compassion and scientific authority.Ch6-1 LeShan fingered stuckness and hopelessness as immune system killers—my mother’s exact responses to her need to make a living.

  I crammed the book into my mother’s hands, demanding she read it. I felt as though I might have found both the key to saving her life and the link I had been longing for between my mother’s world and the outer world of science. It gave a plausible physiological mechanism for how living one’s life well and attuning oneself to the currents of life could help one’s body function better.

  And hey, I figured, even if I was wrong and there was no connection between my mother’s stuckness and her cancer, surely finding a sustainable and satisfying way for her to live was a good idea regardless.

  My mother read the book and seemed generally agreeable, if less lit up by it than I was. Full of the uncracked conviction of an 18-year-old, I contacted LeShan through his publisher, determined to fly with my mother to work with him. But LeShan told me that he was old, he was tired. He didn’t treat patients anymore—sorry. I should find a local therapist. Good luck!

  I hung up the phone and dug the heels of my hands into my eyeballs. A few minutes later, I called him back. I recited a story to him from his own book: Many years earlier, he’d considered quitting his practice to spend more time with his kids. His daughter had told him he couldn’t quit: “Your patients need you.” I echoed her: “My mother and I need you.”

  “Okay, okay,” he grumbled. “Come to New York. We’ll do a few sessions.”

  The next step was to convince my mother to go, but I knew I could do that. We flew to New York, stayed in a hotel that was shabbier than any I’d ever seen, and walked to LeShan’s elegant, book-filled apartment. He was right—he was old and tired, reclining in a La-Z-Boy through the sessions, his skin sallow and drawn.

  And he was no match for my mother. She was there only to please me anyway. The truth, I gradually realized, was that she wasn’t interested—God was on the way.

  I didn’t give up. My mother and I went to a local therapist (together, because she wouldn’t go on her own and I hoped that I could somehow make the sessions useful to her). We went to a workshop in Phoenix where we were told to beat on phone books with batons made of garden hose and scream about our troubles.

  I realized that I wasn’t going to find anyone who could reach my mom. I was on my own. The only tool I had was the one I’d used since childhood: my ability to stay connected with my mother.

  She had started growing weaker, her once-athletic arms and legs shriveling as her belly grew firm and bumpy with her tumor. Her eyes looked too big for her face. One day she got impatient with my attempts to start our ancient gas lawn mower and grabbed the string herself, only to find that she could barely move it at all. She started puking green-brown bile many times a day, and soon we had to upgrade from the one-quart Pyrex measuring cup to a two-quart model.

  Still, my mother insisted that she was going to live. She started adding this, though: “If there’s no hope, I want to take the pills and die.” When she made no effort to procure such pills, I went to the library and checked out a book called Final Exit.

  I went into her room one morning and found my mother confused. “Can Tom fly?” she asked, an absent, awestruck expression on her face. I told her I was quite sure Tom, a college friend of hers I’d met a few times, couldn’t fly. She looked so disappointed that I almost felt guilty.

  Frantic, I called the doctor and got the soonest appointment. When it was time to leave, my mother was sitting at the kitchen table in her underwear with a T-shirt stretched taut over her belly. Her head was down, her ordinarily gorgeous salt-and-pepper hair hanging slack over her face, and when she looked up after I called “Ma,” her eyes were empty. I couldn’t see how I could get her to the doctor. I’d have to go alone.

  I told her I was leaving and that she needed to go back to be
d. She said she didn’t want to, her voice filled with the petulant finality of a toddler. “Okay,” I said, “but then you have to wait until I’m back.” Her head made a motion vaguely like a nod. I tried again, my voice urgent and clipped: “You have to stay right there until I get back. You can’t walk on your own. You might fall. Do you understand?” She nodded a bit more distinctly.

  I left, not knowing what else to do.

  I told the doctor about my mother’s muddleheadedness and asked what could be done. “Nothing,” he said. “She’s dying, and people often get delirious when they’re dying. You should call hospice.”

  I rushed home and found my mother still at the kitchen table. Thank god, thank god, thank god.

  I sat on the window seat next to her and tried to figure out what on earth I was supposed to do now. She looked up and said, with surprising clarity, that I seemed upset. She seems like she’s here at the moment.

  I took a deep breath. “The doctor says that you’re dying, and that’s why you’ve been confused.” I paused, studying her face to see if she was going to reject that, but I saw nothing. “Do you want to take the pills?” I kept my voice even, neutral, as if asking your mother if she wants to kill herself were no different than asking if she’d like some lunch.

  She smirked at me. “You can’t get rid of me that easily, girlie,” she said.

  Tears bit at my eyes and I looked down. It’s a joke, I told myself. It’s just a joke.

  “I’m going to live,” she added, and then her head dropped back down.

  I spent the next day in a frenzy. My whole life I’d accepted and worked with my mother’s beliefs, no matter how odd they might sound to outsiders. But one couldn’t glance at her without seeing the death upon her, with her swollen belly and shriveled limbs and cheekbones protruding like she was a concentration camp victim. I didn’t believe that a miracle would just happen without our doing something to create it, and my mother was obviously not capable of participating in that.