Through the Shadowlands

by Julie Rehmeyer

  I tried to picture asking my sister to take care of me. I couldn’t imagine her saying no, but I couldn’t imagine her managing to do it either.

  There was no one else to ask.

  I opened my eyes again and watched the shabby double-decker houses along Ashby Avenue glide past. I’d have to think about this at another time. I’ll figure it out. I always do.

  When we arrived at the neurologist’s office, the closest parking place was a good hundred feet from the door. I used crutches, but I wasn’t sure they helped. My feet seemed to be glued to the pavement. I leaned forward into the crutches and, using all my strength, pulled my leg up, embarrassed by the groan I couldn’t suppress. Nothing happened. Suddenly, my foot popped from the ground and then crashed down again, a few inches forward. I panted, gathered my strength, repeated the effort. Each step got a little harder, each groan a little louder. I looked down, ignoring any gawking onlooker, and focused on my task. William ran ahead to open doors, but he couldn’t do much to help me get my legs to move.

  In the neurologist’s office, I recited my story. The doctor listened impassively, his round, blank face revealing little. He had me move to the examining table and pushed down on my leg, telling me to resist. “Harder!” he cried. I pushed until tears sprang to my eyes. “Harder!” he cried again.

  After the exam, I lay on the table looking up at the ceiling. My legs had turned to throbbing slabs of meat, and I didn’t think I could even shift them on the table. My brain felt like an overripe peach, swollen, bruised, and delicate. I worked on smoothing the catches in my breath before they could turn into sobs. Odd, I thought, I don’t really feel upset. I don’t really feel anything. The tears seemed to condense directly from the exhaustion that throbbed through my body. I focused on my lungs expanding, contracting, expanding, trying to crowd out any internal speculation about what the neurologist would say.

  The doctor proclaimed, “Your strength is within the normal range. There’s nothing neurologically wrong with you.”

  I couldn’t make sense of what I was hearing. That was obviously impossible.

  “You have chronic fatigue syndrome,” he said.

  Fatigue? I thought. Sure, I’d been tired for years, and I’d wondered if chronic fatigue syndrome might explain it. But this wasn’t fatigue. I couldn’t fucking walk! And wait—the neurologist hadn’t even done any fancy tests. He’d only pushed on my legs.

  I struggled to speak—I knew what I wanted to ask, but the words scampered away from me like a flurry of mice. I finally mumbled something about further testing.

  “Well, yes, I could order an MRI, or maybe an electromyogram,” he said, “but I already know the results will be normal.”

  Treatments? I asked. Nothing he knew of. Other doctors? No, he knew no one to suggest.

  I tried to kick my brain into gear. If only I could think, find the thing to say that would penetrate, clear up the confusion. If only I weren’t too sick to show him how sick I was.

  Finally I asked, “What would you do if it were your wife who was sick like this? Your daughter?”

  He shrugged. His round face was blank as the moon.

  William and I drove home quietly. I narrowed my consciousness, smaller, smaller, examining the glove box in front of me, fingering the seat belt. I couldn’t wonder what was going to happen, couldn’t absorb the spectacular uselessness of that neurologist, couldn’t contemplate what it all meant. I allowed in just one thought: Get home, rest.

  Later, I sat on William’s bed with its glorious view of the Golden Gate Bridge and Googled “chronic fatigue syndrome.” I read the definition aloud to him. Patients with chronic fatigue syndrome—abbreviated CFS—had severe, lasting fatigue not alleviated by rest, along with at least four of eight other symptoms. I went down the list: yes to unrefreshing sleep, muscle pain, increased symptoms after exertion, and concentration problems; no to sore throat, tender lymph nodes, joint pain, and increased headaches. So I guessed I qualified—but my most obvious symptom, near paralysis, wasn’t anywhere on the list. Also, “concentration problems” didn’t seem like it included becoming nearly unable to speak. Nor did the list include the way my face would swell until I could barely open my eyes.

  When I read that many patients are housebound or bedbound for decades and that severe cases of CFS are as bad as full-blown AIDS, congestive heart failure, or late-stage cancer, I couldn’t bring myself to read that part aloud. William would have to find that out on his own.

  I learned that about three-quarters of patients are women and wondered if unconscious sexism might have explained the neurologist’s casualness in tossing me into the CFS pail. The cause was unknown, but the most common understanding was that some event, such as a viral infection or toxic exposure, threw the immune system into chaos, kicking off all the other symptoms. I came across a 1990 Newsweek cover article on CFS calling the illness the “yuppie flu.” I also read a CFS joke: A doctor diagnoses a patient with CFS. “The good news is that it’s not going to kill you,” he says. “The bad news is that it’s not going to kill you.” Ba dum dum, I thought. Hilarious.

  William and I talked strategy, avoiding any longer-term questions. Obviously, we agreed, I hadn’t found the right doctor. If chronic fatigue syndrome really explained what was going on with me—doubtful, but possible—I needed a chronic fatigue syndrome specialist. Google revealed one in the area, but only one. What is the deal with this illness? I wondered. Is it really so rare that a single specialist suffices for the entire San Francisco Bay area? But I’d read that a million Americans had the disease, so that didn’t make sense. Whatever, I thought. One is better than none.

  And this doc, an independent practitioner named Michael Rosenbaum, had even written a book on the illness, years earlier. I was unnerved, though, by his Web site’s mention that he also specialized in anti-aging. Would you like your medicine with a side of hocus-pocus?

  With no better options, a week later William and I were sitting in Rosenbaum’s waiting room, looking at a framed poster hawking an anti-cellulite treatment, showing the smooth hip of a supine young woman. We giggled at a flyer nearby advertising acai berry juice, which Rosenbaum sold in wine bottles for $35. The brochure rhapsodized about the mysteries of the Amazon jungle where the berries grow, pointing out that darker fruits contain more healthful antioxidants and that acai berries are so dark that “they reflect no light!” When the doctor called us in, I couldn’t help but notice the wattles on his neck and his thin, aged skin, neither of which were apparent in his Web site photograph. An anti-aging expert, huh?

  But when we started discussing my situation, Rosenbaum seemed surprisingly sane and knowledgeable, citing studies and explaining the physiology underlying my illness. I mentioned that I wrote for Science News, and I got the impression that Rosenbaum was trying to impress me, perhaps hoping I’d write about him.

  He explained that I had suffered an immune system freak-out called a “cytokine storm.” The ordinarily innocuous vaccination I’d gotten for our Peru trip had triggered an exaggerated response from my disordered immune system, he said, and it was the flood of immune molecules that had crippled me.

  He recommended supplement after supplement, citing studies showing how this one helped rebalance the immune system, that one supported the cells’ tiny power plants called mitochondria that provide energy, and this other one healed broken metabolic pathways. Rosenbaum didn’t have an overarching theory to explain the illness, but he seemed to have a reasonably promising bag of tricks.

  I walked out with a sackful of supplements and orders for a thousand tests. As I paid up, the office attendant earnestly testified that drinking Rosenbaum’s acai berry juice had been the best thing she’d ever done for her health. I passed.

  The tests later showed a hodgepodge of findings, none terribly alarming. A couple of viruses my body had long ago beaten down were mildly reactivated. My iron stores and vitamin B6 and B12 levels were all a tad low. My body didn’t seem to be metabolizing carb
ohydrates well. My gut had more clostridium bacteria and yeast than Rosenbaum liked. He refined his supplement list and said it was good news: I should be better in no time.

  I started taking dozens of pills every day, more pills in a week than I’d taken over my entire life. Each time I parceled out a handful of candy-colored pills, I hesitated before gulping them down—supplements had always struck me as an efficient way of parting the gullible from their money. Few had received any kind of testing, and although I was somewhat reassured by Rosenbaum’s references to studies, I would have had to analyze the studies myself to have confidence in their quality—which felt like way too much work, being so sick.

  And I thought it unlikely that the research would be very impressive. I thought about how difficult it was, for example, to determine whether postmenopausal hormone therapy increased or decreased the risk of cancer—and serious scientific firepower was devoted to that, with giant, expensive studies over many years. That kind of money wasn’t available to test supplements, so the few studies that existed were tiny and unreliable. With little way of determining what worked and what didn’t, and lots of plausible stories one could invent about why one compound or another might be useful, I figured that most supplements were bound to be useless. Some might even hurt.

  And emotionally, for me, supplements were the worst of all worlds: My mother would certainly have rejected them on the grounds that they were medicine, and mainstream doctors would generally have rejected them on the grounds that they were quackery. Having this be the most promising path available to me made me want to weep. I felt no better when I found the same supplements being sold on the Internet for far less than what Rosenbaum had charged me.

  But hey, they might work, I reminded myself. His stories about them sounded good. In any case, I felt like I had to try something, and at the moment, this was the only thing I knew to try. I bought a tackle box for the pills—perhaps if I could organize them tidily in a box, I could also fit them tidily in my mind.

  I was talking with Chris, my therapist, twice a week during this period, sitting in my car a couple of blocks away because it was the only place I could get privacy from William. Chris knew a lot about chronic fatigue syndrome, since his wife was suffering from the illness. They had become convinced that her problems were caused by an exposure to mold and heavy metals, and they’d spent hundreds of thousands of dollars on treatment for her and upended their lives. She was still quite sick, though.

  I listened to his stories about their experience, feeling both interest and skepticism. It didn’t sound to me like all that money had accomplished much, and although they were certain they were on the right track, I was unconvinced. In any case, I didn’t have that kind of money to spend.

  Chris recommended that I check out the Web site of a doctor in England. I dutifully did so and was immediately creeped out. She claimed, for example, to have a cure for autism. That’s got to be total BS, I thought. If she really had a cure for autism, people would be all over her and I would have heard of her. Plus, I didn’t think “cure” was the right model for autism in the first place, and anyway, why would an autism expert have anything to offer someone with CFS? So I ignored her. Hey, I figured, Chris can continue to be helpful to me psychologically even if he likes stupid doctors, right?

  But the next session, Chris asked me what I thought of her. Uncomfortably, I explained my dubious reaction, citing her autism claims in particular. Chris said that her alleged cure involved some kind of psychological something, so of course people would resist it. It did? I thought. Guess I didn’t read that far. But Chris barreled on, claiming that the fact that I hadn’t embraced her approach was proof that I too was resisting something.

  I was outraged. My therapist, to whom I was paying good money and who was my only source of support outside of William, was hounding me because I didn’t believe in his crazy doctor! I wanted to fire him on the spot—but then I’d have even less support, exactly when I needed it the most. I tried discussing my outrage with him, and he saw my response as further evidence of my resistance. I seethed, but I concluded that talking to him about this was not a good use of my very limited energy or money. I needed him, so I simply steered our conversations away from such topics and toward the areas where I found him helpful.

  With no better ideas about what to do, I rested. Sometimes I could walk, other times I could only stagger or crawl. When I felt my best, I worked on stories for Science News, managing to carry a reasonable portion of my load. At a moment when I was feeling strong, I went to the grocery store, hoping to pitch in and ease the burden on William—after all, I still had no idea what I’d do if he decided my illness was too much for him. I relished being out of William’s bedroom and in the world, admiring Berkeley Bowl’s fifteen types of tomatoes and dizzying display of squashes. I’m getting better!

  But as I lifted the grocery bags into the car, I heard myself groan with the effort, and driving home, my leg shook when I shifted gears. Halfway through dinner, I could no longer lift my arms. William had to help me to bed. I awoke in the night needing to pee, but I got stuck after a couple of steps and couldn’t move. I had to ask William to get me a makeshift bedpan—especially horrifying because I knew of his disgust at bodily fluids—and help me back to bed.

  But the experience proved useful, because it made me realize that exertion was the key to my ups and downs. I began a program of aggressive rest, and gradually, my strength became more reliable.

  This program paid off: Over the following months, I was able to incrementally reduce the restriction on my activities, achieving a carefully regulated but semi-normal life. I exercised, gently, and I learned that the first moment the thought “I’m a little tired” wafted through my mind, I had to stop immediately. If I continued for even five more minutes, I paid for it the next day with pain and paralysis.

  William never announced that he could handle it after all, but day by day, he kept showing up. And we were able to find pleasures within my limitations, discussing a movie or walking a few blocks to a café even though we couldn’t go hiking. Indeed, a new sweetness was blossoming between us.

  Even with my increasing robustness, I at times found myself mysteriously stuck in bed for days, paralyzed, hoping rest would again restore me. The worst was “brain fog,” when thinking made my brain throb and feel like it was swelling against the back of my eyeballs. I was barely able to form words and completely unable to do my work. My brain came to feel like an object separate from me, to be managed, coddled, nursed. Or, even more disturbingly, it wasn’t separate from me: When it dissolved, I dissolved.

  When my internship ended, a regular job or another internship were clearly beyond me. So I started freelancing, ramping up my workload as my health improved. I often worked from bed or sprawled on the carpet. I watched my deadlines carefully, aiming to give myself a comfortable margin in case I got too sick to work. I tapered off the supplements, annoyed and impoverished by the hundreds of dollars they cost every month, and I found that almost none of them seemed to be making a difference.

  After immense deliberation, William and I even took our trip to Peru together. I found two stories to report while we were there, and the reporting was a highlight of the trip. One story was about an ancient, primitive astronomical observatory that archaeologists had recently discovered in a 4,000-year-old village, and the scientists gave me and William a private tour. The second was about macaw research in the Amazon, and while we were in the jungle reporting it, a macaw flew into the dining room, stole food off William’s plate, and turned to look at me, its beak lining up perfectly below William’s own beaklike nose as he grinned and I giggled.

  The trip included some minor disasters—when we visited Machu Picchu, the walk up to the town site left me so exhausted I collapsed on the grass and slept—but still, it felt tremendously exotic and expansive: I’m an international correspondent! I had barely even considered traveling internationally before, and I felt like William was literally open
ing the world to me.

  After we got back, I kept looking for a doctor who wasn’t a quack, or a semi-quack, or a know-nothing. I’d given up on Rosenbaum after concluding that his supplements were almost certainly useless. Still unconvinced that CFS really explained my symptoms, I went to a neurologist at the University of California, San Francisco, who specialized in gait disorders. To guarantee that I could display my own special disordered gait for the doctor, I went for a long bike ride in the Berkeley hills a few hours beforehand, abandoning all restraint, reveling in the joy of pushing my muscles. I got home, bounded upstairs, and danced a jig in front of William. Then, within a couple of hours, I crumpled like a week-old flower. I had successfully crippled myself.

  This time, we were savvy enough to ask for a wheelchair to get me into the doctor’s office. The doctor then watched me stagger down the hallway. My gait, he said, didn’t match any he’d seen before—it wasn’t the MS teeter or the Parkinson’s shuffle. Instead, he declared that it might be “conversion disorder.” That is, it was psychosomatic.

  “Fine, then what do I do about it?” I snapped. The doctor had nothing to say and shifted uncomfortably in his chair.

  After we left, I felt as though I’d barely escaped with my life. I’d read stories of CFS patients who had gotten locked in psych wards, kept from contact with friends and family so that doctors could dredge out their “false illness beliefs.” I wasn’t inherently offended by the notion that my psyche could be contributing to my illness—my mother had drummed into me the idea that my patterns of thought could have a profound impact on my body. What angered me was that, coming from this doctor, the idea was so useless. It only added a dollop of blame to the news that the doctor had nothing to offer.