Through the Shadowlands

by Julie Rehmeyer

  In any case, my joy at my recovery made the reasons for it seem like a trivial matter. Also, my experience with Geoff had taught me not to expect straightforward explanations even for major experiences in my life. I still couldn’t say why Geoff had collapsed as he did, or how I could make sense of it in my life, or what I’d learned from it all. But I felt myself slowly, slowly digesting those events and allowing them to change me. In a similar way, I imagined that even though I couldn’t make much sense of my illness yet, over years, it would rework me and come to have a meaning I couldn’t yet see.

  I was also struck by how different the experience felt to me than it would have if I’d had a clear, unambiguous, scientifically ratified explanation for what had happened. The upside was that the experience had an openness, a fertility about it—I felt more room to create my own meaning. It felt potentially, if not actually, profound. If I’d had, say, an especially bad bout of mononucleosis, I imagined that the simple, mechanistic explanation would have felt so complete and compelling that it would have left room for little else, and the experience might have felt banal.

  The downside was that my mysterious recovery reinforced the scent of illegitimacy about the illness, even in my own mind. That dichotomy struck me as peculiar: Clearly, something had been going wrong inside my body, and medicine’s failure to understand what that something was didn’t change the fundamental reality. But without a known explanation, the illness felt a bit like Schrodinger’s cat: neither dead nor alive, neither physical nor psychological, and yet rich with possibility.

  Unlike a cat that truly can’t be simultaneously dead and alive, it seemed to me that my illness had to be both psychospiritual and physiological. We experience the world on both of these levels, and they are so interwoven that even conceptually, we can’t truly separate them. Take the simple example of pain: The intensity of neural firing correlates only loosely with a person’s subjective experience of pain, and that subjective experience is strongly impacted by our interpretation of what we’re feeling. If we believe we’re being damaged, it hurts a lot more than if we believe the pain is harmless. It’s all woven together.

  But I was far more concerned with moving forward with my life than engaging with that endless puzzle. With my health so much better, the kid problem felt more pressing, and I had more energy to tackle it. The conviction William and I had shared that the trip would break the jam seemed to be nothing more than a fantasy. I finally did something I’d been resisting for ages: I gave William an ultimatum. Agree to a kid by my 37th birthday in a few months, I said, or I’m leaving.

  A month or so before my birthday, he said yes.

  Finally, the family I’ve been trying to create since my mother died! At long, long last, my life seemed to be falling into place, the blockages I’d been stuck on dissolving.

  William wanted to wait a few months before conceiving, and in the meantime, we bought a lovely cottage together in Berkeley, with room for a baby and with stairs that we figured were no longer a problem for me. When we moved, I hauled furniture and boxes all day without a second thought. I shipped the glass Christmas ornaments my mother and I had collected together from storage at my house in Santa Fe to our new home. I felt a huge contentment, standing healthy and strong with my beloved partner, seeing my own sparkling Christmas tree in our own comfortable house. The next time we brought the ornaments out, I figured, we’d have a baby in our arms or in my belly.

  But William still wasn’t quite ready for us to get pregnant. We decided to get a puppy first, as a test run on our ability to coparent—though, since I was far more interested in the puppy (and the baby) than he was, I accepted that more of the work would fall on me. I found a 10-week-old, brown, floppy-eared puppy on a rescue organization’s Web site. When I met her and picked her up, she melted against me and snuggled her nose into my neck. We named her Frances, after the badger in the children’s book Bread and Jam for Frances.

  I was astonished by what a miracle this puppy was: her sweet breath, her soft little body, her growth every day, her instant connection to us. I knew my reaction was absurdly intense given that she was a perfectly ordinary puppy, but her ordinariness only increased the miracle: Imagine! We live in a world filled with puppies!

  I also thought, Man, if I’m this over the moon about a puppy, imagine how I’ll be with a baby.

  The coparenting experiment, however, was a spectacular failure. Anytime Frances peed in the house, William became convinced that she would never get house-trained and that it was my fault for not watching her closely enough. He wanted her never to bark under any circumstances, and god forbid she chew anything she wasn’t supposed to. Raising a puppy with William proved far more difficult than raising a puppy by myself, and I quailed to imagine what raising a child with him would be like. Chris’s view that William fundamentally didn’t want to have children—and even more, that he wasn’t cut out for the task—became hard to deny.

  I found this almost impossible to take in. Just a few months before, I thought my family was finally coming together. But when William fumed if Frances cried at night and equally fumed if she snored when sleeping beside us, I felt like the last thing I wanted to do was have a baby with this guy.

  I tried to dismiss the problems as adjustment, and I focused on maintaining my own emotional equilibrium as William, I hoped, found his way back to his. I also tried to look at the bigger picture: We’d been together for four generally happy years. Despite his fear that he couldn’t handle it, he’d stuck by me through my illness. And I loved our life together. I loved our house, I loved walking up to downtown Berkeley together for dinner at our favorite Indian or Mexican or Nepali restaurants, I loved the parties we threw that felt like a ratification of our life together, I loved watching how William’s mind worked as we discussed a movie or a lecture. I simply enjoyed his company. Although I couldn’t regard his behavior with Frances as anything but ridiculous, I hoped he’d find his way through it and become a reasonable partner again. No need to freak out, Julie. It’ll be okay.

  Later that spring, in 2010, I went for my usual run and found that it didn’t feel so good. I stopped a bit early and dragged the rest of the day. The next run, I could do even less, and within a week, I couldn’t run at all anymore.

  My recovery, apparently, was only a remission. And it was over.

  Some days, I couldn’t think clearly enough to work. Occasionally, I even had trouble walking again. It seemed that I had once more displeased the Greek gods.

  And then at the beginning of the summer William told me he’d changed his mind about getting pregnant. No kid, he said—not then, not ever. “It’d be hard enough if you were fully healthy,” he said. “Even if you get better again, I’ll always know you could get worse at any moment, and I could be stuck taking care of the kid and you both. I’m just not up for that.”

  I gasped for air, as if the wind had been knocked out of me. Even though I’d been having severe doubts of my own, I was so angry that leaving William didn’t feel like sufficient punishment: I wanted to scratch his eyes out. I desperately wished I had never met him. Even if I left William right then, finding a new partner and building the relationship to the point where we were ready to have a kid would take years, and I was already 37. I may have lost my children.

  One night, William held me while I sobbed so hard that I burst capillaries around my eyes, leaving a constellation of purple spots the next day. William remarked in the morning that he was sorry I was in so much pain, but the good side was that he finally understood how deeply having a child mattered to me—though that didn’t change his mind or anything. His remark only made me want to kick him in the balls. You didn’t understand that years ago, you fucking asshole?

  Still, I couldn’t bring myself to leave William. He wanted to stay together, and he continued to bring himself to the relationship with vulnerability and commitment. The idea of frantically looking for some new man to father my children made me feel ill. And the idea of being alon
e, again, overwhelmed and depressed me. I imagined myself returning to Santa Fe, starting over again—but this time, starting over when sick and possibly too old to have a kid. And even if I met someone else and built a new relationship, a prospect that sounded far more exhausting than exciting, who was to say it wouldn’t just fall apart too?

  Over the next few months, I limped along in a haze. I slowly developed a plan of sorts. I’d always figured that if I neared the end of my childbearing years without a partner, I’d have a child on my own. My mother had raised me by herself, and while I had been aware of my father’s absence, I had felt loved beyond measure. That alone, I felt, had given me the foundation I needed. Plus, I’d watched my sister raise a fabulous daughter by herself.

  Of course, I hadn’t counted on being sick while being a single mom. Still, I was confident that I could continue managing my illness as I’d done for years—why wouldn’t I be able to do so with a kid too? Heck, I’d built a house by myself with a sick husband while my body was falling apart!

  So in the fall of 2010, I decided to get pregnant using donor sperm. I told William, and although he and I both knew that our relationship almost certainly wouldn’t survive that, we stayed together in the meantime. I didn’t have the heart to wrench myself away from him, and he seemed to be hoping that I wouldn’t be able to get pregnant and the problem would thus go away. The situation felt awful to me, awful almost beyond imagining, but I couldn’t come up with a better solution.

  I did my research. In a few months, I would start trying to get pregnant.

  In December, Frances and I went for a hike in Santa Fe. William and I had been spending much more time in Santa Fe—he had offered that as a concession, hoping it might make our life together more satisfying for me. My house was rented out, but any time we wanted we could stay in the pair of travel trailers I’d brought onto the land while building. Frances and I stayed a couple of extra weeks after William had returned to Berkeley. My health had improved, not back to a full remission but enough that I could do a gentle four-mile hike like this one.

  I soaked up the land greedily. We hiked along the stream, past the oak tree with branches that stretched horizontally into an arbor across the trail. I breathed in the always-cool air at the “Anasazi icebox,” where a huge, damp, north-facing rock acted as a natural refrigerator. Then we turned right into a side canyon almost no one ever went in, up to the saddle where I’d discovered an error in the contour lines on the official federal topographic map, and down along a hidden arroyo with a trickle of water running under the ice. Frances streaked past, dodging around me at the last possible moment before barreling down the trail. I delighted in the joy she took in her strong, sleek, nine-month-old body, tearing up and down the trail with none of my ever-present caution.

  I had begun the bizarre process of choosing a “donor” for my child—do I want the blond guitarist business major, or the Italian-American who loves bicycling?—and was planning to start donor insemination soon after I got back to Berkeley. I fantasized about someday coming here with a baby on my back. In my daydream, it was summertime, and I’d stop in this little cottonwood grove and my baby would crawl in the long grasses.

  And then I realized: I was getting tired. It’s time to stop, right now.

  I sat down on a rock. I knew I’d pay for every additional step I took, even though similar hikes hadn’t been causing me problems lately. But stopping wasn’t an option: I was still a mile deep into the wilderness. Frances ran back to me, smacked a kiss on my cheek, and ran off again. I wished I could ride on her strong back, or suck some of her ample energy off her.

  I rested until the cold rock hurt my butt, and then I started walking slowly. Another rest, another gentle walk. The walking stretches got shorter, slower, harder. Please, god, don’t let me get paralyzed out here. When I made it across my bridge and then into my trailers, I rested my head against the fake wood paneling inside and sobbed.

  The next day, I couldn’t walk, couldn’t think. My bones hurt, my eyes swelled, just moving my lips was hard work. Don’t freak out, I thought. It’ll just be a couple of bad days, and then you’ll be okay. Time to rest.

  But I didn’t get better. I delayed my return trip by a few days, but I still could barely walk. Finally, I hired a couple of local boys to help me pack, and I drove back to Berkeley. Fortunately, even when I was quite sick, I could almost always manage to drive.

  After I got back, day after day, I could barely get out of bed. The image often arose unbidden of a giant shovel scooping me up and tossing my ragdoll body on the compost pile. The idea of getting pregnant was now ridiculous.

  Frances spent hours cuddled up next to me, a tight brown ball of warmth and comfort. Then her puppy energy would take over: She’d tear around the house, full of flapping ears and pig grunts, her claws leaving scratches on the linoleum floor as she spun out on the turns. Since I was too weak to take her for walks, we instead went to the dog park—but then I didn’t have the strength to chase after her when she refused to go home, deafly cavorting with her buddies. I’d have to ask others for help luring her in. When I was strongest, I’d walk slowly, slowly two blocks to a café and try to work, but I often found that when I got up to go home I couldn’t walk anymore and had to call William for a ride.

  I fought off panic as the nonfunctional days piled up, my work undone, with no idea when or if I would improve. I sent apologetic e-mails to the editor of my math column at Science News, promising that I’d get him something next week—and then, well, next week. Because many of my symptoms were so intangible, I even doubted myself. Maybe I’m coddling myself, being lazy, I thought. If I just tried harder, I could get something done. I’d use the tricks that had gotten me through procrastination in the past, telling myself things like “Write the next paragraph and then you can have a piece of chocolate” or “Cut the fucking crap and get to work!” But none of those tricks seemed to work much anymore. I thought my inability to work was a direct product of my illness—but how do you ever know?

  Then I’d have a day where I couldn’t turn over in bed and could barely lift my head, and I’d stop the obsessive self-questioning. Or, rather, I’d turn it around and wonder why, when I felt a smidgen better, I couldn’t seem to remember just how sick I really was.

  It was clear: I needed help. The only source for that seemed to be the doctors I’d given up on. On the online patient boards, occasionally someone mentioned one faraway specialist or another who seemed to be genuinely scientifically minded, levelheaded, competent. But most of them had waiting lists of six months to two years. Other specialists chose the patients they were most interested in, and the rest waited forever.

  But one physician, a Florida immunologist named Nancy Klimas, had a clinic that was relatively new, private, and didn’t accept insurance—and thus had a shorter waiting list.

  I read everything I could about Klimas and watched videos of her on the Internet. I read that in the 1980s, she’d been a young immunologist captivated by the puzzle of AIDS, both decoding it in the laboratory and treating its victims. But other patients had come to her as well, patients who didn’t have AIDS but were profoundly exhausted, brain-fogged, and in pain and who found that if they exercised, they paid for it later. Klimas tried to turn them away—she didn’t know anything about this strange disease, if it even was a disease—but they begged her, convinced that something was wrong with their immune systems. She relented and tested their blood, and she found such a consistent pattern of immune abnormalities that she knew they were sick with some real disease. And these patients had no doctors to treat them.

  So Klimas became their doctor, treating them alongside her HIV/AIDS patients. She became one of the most respected and committed researchers and clinicians for chronic fatigue syndrome in the world, dividing her time between treating patients, research, and advising governmental committees about the disease. Two years earlier, she’d told the New York Times, “My HIV patients for the most part are hale and hearty th
anks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses in 2009, I would rather have HIV.”

  When I called Klimas’s office, I got the first available appointment, in March, less than two months away. Not bad, I thought. Now I just have to get through until then. In the meantime, I tried to ask myself as few questions as possible, avoiding thoughts about whether I’d get better, about what meaning I could create out of this experience for myself, about whether William and I would stay together, about whether somehow I’d manage to have the child I so longed for.

  Day by day, breath by breath, bathroom trip by bathroom trip, I got through.

  One morning as I was counting down the days until my appointment, I was reading the New York Times on my phone—sitting up to use my computer was far too hard—and came upon the headline “Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds.”