Through the Shadowlands

by Julie Rehmeyer

  Half an hour later, we decided to go to the Everglades after all. When we asked at the gate if they had a wheelchair we could use, the attendant asked if I was permanently disabled. I hesitated and then said yes. She gave me a Golden Eagle pass that brought free entry into any national park, for the rest of my life. William and I grinned at each other.

  William pushed me in their wheelchair along a canal, dodging the sunbathing alligators lolling across the path. Great rivers of grass blew in the wind. A green-black cormorant swam through the clear water like a feathered fish, lazily pecking at the algae on the streambed. I leaned my head back to kiss William.

  I had gotten my miracle after all. And lo, it was Gatorade.

  * * *

  Ch6-1 At least, it sounded scientifically authoritative to me at the time. Since then, I’ve become skeptical of much of the science around mind-body medicine. The links may exist, but proving them scientifically requires enormous care, and so far, little work has been done that meets that standard.

  Ch6-2 At the time of writing this book, there is no good name for this illness. “Chronic fatigue syndrome” is horrendous—trivializing, inaccurate, and overly broad—but “myalgic encephalomyelitis” has its own drawbacks.

  I know of no scientists who use the term “myalgic encephalomyelitis” on its own. They point out that we have only a small amount of scientific evidence to support the idea that patients’ brains and spinal cords are inflamed (though it sure felt like it to me!). We don’t know at this point if all patients have neuroinflammation, and we certainly don’t know if neuroinflammation is at the root of the diverse array of symptoms that plague patients.

  From a patient perspective, however, “myalgic encephalomyelitis” has a lot going for it. Those who are seriously affected pretty much all have both pain and neurological symptoms that seem related to inflammation. The scientific evidence for neuroinflammation has grown over the last few years—and of course, with so little research funding, it’s hardly surprising that more evidence doesn’t yet exist. The name has a deeper pedigree than “chronic fatigue syndrome”: It was coined in 1956, and the World Health Organization continues to list it. And, of course, “myalgic encephalomyelitis” has a serious tone that is appropriate for the seriousness of the condition. The patient community has increasingly embraced the name ME. Many consider ME to be distinct from CFS, reserving the term ME for more severe forms of the illness.

  The National Academy of Medicine suggested the name “systemic exertion intolerance disease” in its 2015 report on the illness, but that name has received little support.

  For myself, I found the scientific objections to the name ME too compelling to ignore. I’ve stuck with ME/CFS as a compromise solution, especially because federal agencies are using that term and it’s one my journalism editors would accept. There’s no question that it’s a klunky compromise. It’s especially problematic for those working to distinguish ME from CFS.

  The name issue is intimately connected to the issue of definition. Just what illness are we naming here? Both ME and CFS have multiple competing definitions, each of which captures a different patient population. Most likely, none of the definitions carves nature at its joints, capturing a precise set of patients who share a common root physiological problem. Very broad definitions of chronic fatigue syndrome, such as the Oxford definition which requires only six months of disabling fatigue as the primary symptom, certainly don’t.

  I don’t think we’ll find a name or a definition that the community as a whole will embrace until high-quality science reveals the underlying mechanisms of the disease.

  CHAPTER 7

  ALONE

  The morning after we returned from Florida, I woke up barely able to move, groaning as I staggered to the bathroom. Gatorade time! But Gatorade wasn’t in our normal supplies, so I asked William to go get some.

  “I have work to do,” he said. “It’s only two blocks. Get it yourself. You can’t expect me to take care of you all the time the way I did on the trip.”

  I gasped. It was true that he’d been wonderful in Florida, supportive and present, figuring everything out with me. I knew how hard my illness was on him, and I’d thought that perhaps our connectedness on the trip showed we’d gotten over a hump together. Well, thanks for clearing that up, I snorted to myself.

  I caught myself before I snapped at him, my aggravation wilting into weary futility. I knew that William would get the Gatorade for me when I insisted—he knew as well as I did that it was all but impossible for me to. But as he walked to the store to get it, he wouldn’t be suffused with his love for me, nor would he pat himself on the back for being such a great boyfriend. When he returned, my genuine appreciation would be salted with irritation, and William would feel deprived. And then my next need would feel even more onerous to him.

  As clear as our pattern of resentment was to both of us, neither of us knew how to get out of it. So we reenacted it, just as I’d imagined. He got the Gatorade and then went back to work as I sucked down my glowing urine-colored elixir, the few feet between us a frozen crevasse.

  I remembered William once telling me that he thought the illness was harder on him than on me. I’d raged to myself, Just which one of us is paralyzed here? But the irony was that in a way, he was right. The intensity of my illness crushed him and made his life feel narrowed, reduced. He felt constantly aware that my illness might suck the happiness from our lives, no matter what we did. On top of that, I didn’t, in his eyes, sufficiently appreciate his sacrifice and devotion in staying with me despite that.

  But I didn’t want staying with me to be an act of sacrifice and devotion. I believed we could live richly in spite of the illness—or at least, I was hell-bent on doing so. To me, living with the illness felt like learning to fence with one arm tied behind my back, and then with my legs tied together too. Sufficient skill, I was convinced, could overcome the handicap. That belief provided the lubrication that let the agony slide past and made the illness bearable.

  I stopped my cogitations when I realized that the Gatorade miracle had worked again: I can walk! I decided to take advantage of my reclaimed ability to go to my usual café two blocks away and work on a report I was months behind on.

  I walked slowly, slowly, feeling as though all that Gatorade I’d just sucked down might spill out my ears. As I settled in at my old table next to a window, I soaked up the chatter of other humans, the smell of the yeast and flour, the feeling of sitting up in a hard wooden chair. I pulled out my computer and, blessedly, worked.

  After a couple of hours, though, my thoughts grew slow and stupid and I had the familiar feeling that my brain was swelling against the back of my eyeballs. I packed up my computer and went to stand up—and found that I couldn’t. And I didn’t have any Gatorade.

  Fuck. I’ll be damned if I’m going to call William right now.

  The most important electrolyte, I knew, was sodium, so I unscrewed a salt shaker and poured a small mountain of salt into my hand. I slugged it down with a full glass of water and then sat, stuporous, for 10 minutes. I felt my brain start to clear, and I braced myself on the chair and table and tried getting up again: Voilà! I was able to walk home without making a spectacle of myself. I felt a giddy delight: I had mastered one more fencing move. Ha!

  By the time I got home, though, I was exhausted and went back to bed. Well, two hours of work are a lot better than no hours of work, I thought.

  In the weeks following the appointment, I found that I was no longer stuck in bed nearly all the time, as I’d been before the trip to see Klimas, but my abilities were still constrained and unpredictable. I took my six-year-old nephew to a museum for an hour and ended up in bed and in pain for the next two days. I rallied for an interview on NPR’s All Things Considered about the prize a mathematician won for discovering, among other things, that there are 28 different kinds of spheres in seven dimensions. While I thought I sounded reasonably coherent and even lively on air, I could barely say my
name or get back to my car once the interview was over. Gatorade could be counted on to raise me from the lowest points, but it didn’t provide reliable function overall.

  The endless self-focus of illness, the consuming minutiae of judging and predicting and managing my physical state, aggravated and bored me. And when I was stuck in bed, I was consumed by uncertainty about what kind of life was open to me now. Most of all, I obsessed about whether I’d be able to have a child. Klimas’s encouragement was all well and good, but it was predicated on having a “supportive partner.” Not only was William unwilling, he was incapable.

  The “kid question” felt like a dark force glowering in the corner. William was caring for me far more than he ever had before, while knowing that our future together seemed damned whatever happened: If I got better, I’d leave him to have a kid; if I didn’t, my illness would continue to limit our lives. My heart broke, for myself but almost more for William. I remembered how my own hope for a future with Geoff had slowly suffocated under his illness, and how hard it had been to continue to care for him once that hope was snuffed.

  I knew the idea of having a child while I was this sick was insane, with or without William. But it seemed even more insane to not have a child. My children felt present to me, like they already existed. I loved them; I felt as though I almost knew them. To not manage to bring them into the world seemed like an unforgivable failure. I also imagined living a kind of half-life if I remained childless, like a huge part of me would never be expressed. If this damned illness deprived me of my children, I’d never forgive it. And I knew I couldn’t forgive William either, no matter how much sympathy I had for his concerns.

  As I spent hour after hour lying in bed, looking at William’s back as he worked at his computer, I began fantasizing of my own home and land in Santa Fe, of my stream and my ponderosa trees, a quiet place I could be alone to think my own thoughts. I can’t do this anymore, I thought. I can’t be this sick, be unable to have a child, and have my illness drag my partner down too. I’ve got to get out. Of course, if I went home, I’d be all alone, far from town, with no one to help me—but the cost of William’s help was too high, and I didn’t have anyone else to turn to.

  I told William I needed to go home, and he agreed that I should go to Santa Fe for the summer. He talked of my return to Berkeley in the fall, but I knew I wouldn’t be coming back.

  Pulling out of our driveway in my packed Subaru a few weeks later with William waving good-bye, I felt as though I were ripping my heart right out of my chest. William and I had intertwined so deeply that leaving him felt like an act of violence—but also like a grasp at life. As I drove away, my lungs seemed to have forgotten how to breathe, and sounds I didn’t recognize came from my chest as I labored to pull in air.

  I tried to take comfort in a dream I’d had the night before: I’d been too sick to walk and had to cross a river in flood. Somehow, I had not only managed to get across, I’d carried a half-drowned deer to safety with me.

  I couldn’t help but hope, yet again, that changing my life would change my health. Surely, I thought, escaping the tightening noose our relationship had turned into and returning to the land I so loved would make me feel at least a little bit better. How could it not?

  I picked up my friend Sheila, who had volunteered to help me move back home. She was a fine art photographer and had never been to the Southwest before, so I got the joy of seeing the familiar desert landscape we were crossing through Sheila’s eyes. She goggled out the window at the mesas and cacti and occasionally hollered that we needed to stop so she could take a picture. Except for my occasional inability to get up out of the car or sustain a conversation, the drive felt like two girlfriends on an ordinary road trip.

  When we turned east toward the mountains just north of Santa Fe, I felt my chest expand. The road began to rise and fall through the foothills before dwindling to a single lane and turning into my narrow, oak-filled valley, a riot of bright-green leaves. We turned across the bridge I’d built, strong enough to hold a concrete truck, and drove under my own great ponderosas. We got out of the car, and I sucked in a great lungful of butterscotch-scented air. Sheila was spinning around slowly. “I can see why you wanted to come back here,” she said.

  My house was rented out, but the pair of old travel trailers I had lived in while building the house were empty, and they were to be my home again. I saw their ugly tin-can sides and knew that by any objective standard they were crappy, but I’d come to love them over the decade I’d owned them. I’d installed hardwood floors, supplied the kitchen/bathroom trailer with water from a rainwater purification system I’d developed myself, fixed their leaks, replaced the appliances one by one as they’d broken. Their many windows looked out toward the stream, and the breeze blew through them on hot days. The kitchen was tiny but efficient, everything within a step, and I even loved the minuscule bathtub I could just fold myself into.

  We discovered that uninvited mousy tenants had set up housekeeping while I was gone, decorating the place with their droppings. Sheila dauntlessly donned a mask, banned me from the trailer until she was done (lest hantavirus do in my compromised immune system), evicted the mice, and cleaned up their turds. I couldn’t have brought myself to ask her to do such an unpleasant job if she hadn’t volunteered. When she was done, I pulled a panel off the wall to uncover the spot where the pipes entered the trailers, and I stuffed steel wool around the gaps, hoping to prevent new squatters from taking over the place.

  Over the next week, Sheila unloaded the car, followed my instructions about unpacking, and helped me cook a huge mass of food that I froze in individual containers, insurance in case I was too sick to cook for myself.

  I was determined to show Sheila the spots up the stream I so loved—the oak tree arbor, the rock-cooled “Anasazi icebox,” and most of all, the 20-foot waterfall that sprayed its grotto with mist. But each time we went up the trail, I had to turn around within a quarter mile.

  The day before Sheila left, though, I woke up feeling good, and I sent us on an expedition to one of the most beautiful places on earth, a wonderland of sculpted, eroding white cliffs an hour away. I walked for five minutes, lay down for five minutes, and then walked again, following the advice Klimas had given me to exercise safely. Sheila matched my slow pace by pausing to take photographs, and Frances looped back from time to time before sprinting off to check out another crevice. I felt as though I were expanding, untwisting, growing into the landscape. Thank god I’m home.

  I drove Sheila to the train station for her trip home and told her what a hero she’d been. She tilted her head and shrugged her shoulders. “I’m glad I could help, kiddo,” she said. “But it’s not adequate. It’s just not adequate.” She hugged me, her body thin and long against me.

  My only plan was to hope that I improved—but in fact, I mostly felt like crap after she left, worse than in Berkeley. Sometimes my groans were so loud as I pulled myself up the stairs into the trailer with the bathroom that the tenant in my house ran out to help. I got a pee bucket to put next to the bed and hoped that at least I’d be able to use that. But sometimes I was too weak to even roll out of bed to use it.

  Probably just the exertion of moving, I figured. It’ll get better. I opened the bedroom door so I could look from my bed out through the ponderosas at the stream and listen to the birds’ chatter and the burble of the stream. Frances would find a stick, toss it in the air, and chase it down, over and over, or she’d run after a squirrel and dance at the bottom of the tree while the squirrel lectured her on her bad behavior from its safe perch. In the evenings, she curled up in bed with me, warmth and energy thrumming into me from her strong, solid body.

  I reminded myself that it had only been a couple of months since I’d seen Klimas, and her treatments hadn’t taken full effect yet. A couple of weeks before leaving Berkeley, I’d had a phone consultation with her to get my test results, and she reported signs of reactivated viruses everywhere: My blood teemed wi
th antibodies to Epstein-Barr, cytomegalovirus, Mycoplasma pneumoniae, and varicella. The immune messengers called cytokines indicated lots of inflammation, and one cytokine in particular, INF-gamma, was extremely high. “That’s your natural anti-viral,” Klimas said. “You’re cranking! That’s more evidence that there are viruses, and, hey, your body is trying to deal with them! For a lot of people with ME/CFS, their bodies are too worn out to do that. That’s pretty cool.”

  But my immune cells were dying off faster than they should, an indication that my immune system was starting to wear down, and my natural killer cells barely functioned. Still, Klimas said that many of her patients’ natural killer cells were even weaker than mine, and at my level, prospects for improvement were good. To her, all of that meant we were on the right track. The immune modulators I was on should help out my immune system. Stay the course!

  But that meant I had no new treatments to pin my hopes on—I just had to give the current treatments more time. Be patient, I told myself, and I found the admonition more effective than it had been in Berkeley.

  From time to time, I considered what I’d do if I didn’t get better. It was a question I could only look at out of the corner of my eye, in quick glimpses.

  I didn’t feel like I had any family I could turn to. My mother had estranged herself from almost all of her family—and me along with her. One of my aunts had reached out to me just after my mother died, sending me a kind note and a box of pecans from her orchard. Given my mother’s rejection of her family, the box of pecans felt dangerous to me, like betrayal and enmeshment lay hidden inside the ruddy shells. I cracked a pecan open and found it rotten. I laughed, threw the box away, and didn’t respond. Years later, when I had managed to separate my sense of myself from my mother more, I reached out to my aunt and even went to visit, and she was extremely kind. But still, we barely knew each other. I certainly didn’t feel like I could throw myself on her mercy.