Through the Shadowlands

by Julie Rehmeyer

  William invited me on a trip to Peru to celebrate the end of my internship in January. Visions of Machu Picchu dancing in my head, I got a hepatitis A vaccine for the trip on a Thursday evening in November. Twenty-four hours later, I felt anesthetized, as if some external force were shutting my brain down.

  I made it home from work in a daze, fell asleep, and then slept through the weekend, finally forcing myself up on Sunday afternoon to get groceries. When I got out of bed, I staggered as if I’d powered up a mountain on my bike the day before rather than sleeping for 48 hours.

  Wow, weird, I thought. Maybe moving around will help. I headed out to walk to the grocery store, just a half mile away, but soon, my walking deteriorated further and I stopped to rest, sprawling on a lawn to call William back in Berkeley. I laughed, telling him that my Frankenstein walk had turned into an old-lady shuffle. Ha ha ha! I can’t even stand up straight! Laughing calmed me down, making it seem self-evident that this would pass, just as it always had after exercise.

  But after chatting with William and resting another half hour, I knew I couldn’t possibly walk to the store. It started not to seem so funny anymore. I had left my car in Berkeley and was getting around by foot and metro, so I called the family I rented a room from to ask for a ride. The mother agreed, but grudgingly. At the store, I used the shopping cart as a walker, and by the time I had finished checking out, I felt delirious with exhaustion. I seethed when my landlady didn’t help lift the bags into the car, instead just watching me as I lifted each bag with two hands, quickly moved one hand to the side of the car to stabilize myself, then swung the bag into the car with a groan. After I got home and put my groceries away, I could only get up the stairs to my third-floor bedroom backward, on my butt, lifting myself a stair at a time. As I collapsed into bed, the fear I had been pushing aside flooded over me, and I sobbed into the pillow.

  Something is really, really wrong with me.

  I tried to calm down and think it through. It felt like a mash-up of that weird flu I’d had in Santa Cruz and my post-exercise pain and hobbling, with extra intensity sprinkled on top like hot sauce. I already knew something was going wrong with my body, but this was a new and terrifying level. What the hell was I going to do? My thoughts started scrabbling toward solutions—Call my doctor! Find a specialist! Go to the emergency room!—but the mental effort of trying to figure it out made my brain hurt. I also recognized that the middle of a crisis wasn’t a great time for strategizing. Surely my body would recover on its own, just as it had before, and then I’d work out my next steps.

  And indeed, although I woke up Monday morning feeling far too ill to go to work, over the course of the day, my walking normalized and my strength returned. Thank god, I thought, it’s going away, just like I expected.

  It occurred to me that maybe this was all just a strange side effect of the vaccine, unrelated to the other ways my body had been struggling. I turned to Google and read that the hepatitis A vaccine was pretty benign, with no similar bad reactions. Still, I thought, maybe I’m just special, giving the doctors a run for their money with my one-of-a-kind bodily freak-out.

  That evening, I had a phone call with my therapist, Chris, and I presented the episode as concerning but not really a big deal. I heard the worry in his voice as he questioned me about it. “It’s okay,” I told him. “It’s over. I’ll talk to my doctor about it the next time I see her.”

  But it wasn’t over. I woke up Tuesday feeling addled. I staggered out of bed and went down the stairs on my butt to get to the bathroom. My face in the mirror looked weirdly swollen. I butt-scooted my way back upstairs to bed and then slept through most of the day.

  During a brief period of awakeness, I called my doctor’s office—that seemed like a straightforward, reasonable step to take. But I was told I couldn’t see her until the following week. Because my mother had been a Christian Scientist and had avoided doctors as the religion dictated, I had little experience with them, and I wasn’t quite sure what doctor-oriented people even did in a situation like this. I’d never been to an emergency room and couldn’t imagine going all by myself. Plus, how would I get there? I didn’t have a car, the metro was too far away, I’d probably scare the hell out of a taxi driver in this state, and calling an ambulance seemed awfully histrionic. This isn’t precisely an emergency anyway, is it? It’s not like I’m in immediate danger.

  The idea that my body would recover on its own was irresistibly alluring, so much nicer than getting all worked up about it. Nearly every health problem I’d ever had had gone away with nothing more than some good self-care.

  My thoughts kept drifting to Majorca. Wasn’t that where the composer Chopin had gone with his lover when his health was poor? Imagining it made my situation feel almost romantic. I fantasized about lying on some beach, having a buff male attendant wheel me about, bringing me delicious food and giving me massages. Surely that would fix me right up. I Googled to see if any such option existed, but all I found was a fancy medical spa in Mexico that charged $5,000 a week plus whatever their dubious-sounding treatments cost. I also read that Chopin and his lover had fled Majorca, frozen out by north winds and unsympathetic locals.

  Okay, maybe not such a good plan.

  Unsure of what else to do, I went back to sleep.

  Wednesday morning, I felt better. I walked to the shower fluidly, grinning and swinging my arms with delight. After I got dressed, though, the bed seemed to be exerting an irresistible gravitational force. I lay down and then woke up several hours later, still exhausted. I sprawled in bed, limp as a fish.

  I felt as though I could hear the tinkle of fantasies shattering as they fell to the ground. This is seriously fucked up, I thought. Time to face it.

  I started by calling my boss and explaining that I was very ill and didn’t know how long I’d be out. The warmth and concern in his voice—“You just take care of yourself, don’t worry about us”—made my breath catch in my throat.

  After I hung up the phone, I lay back in bed, smoothed my breathing, and evaluated the situation: Something was clearly wrong with my body on a level I’d never experienced. It had been five days, and I was no better. I was living in a city where I hardly knew anyone. I didn’t have a car. I couldn’t get to work. I couldn’t cook for myself. I couldn’t even get groceries. This is not going to work.

  My first thought was to get help. I’d already called my one old friend who lived near DC, but she was busy with her three kids and her job. She might, if she was lucky, be able to come see me in a week or so. My only family, really, was my sister, who lived in Arkansas. I’d called her a couple of times and she talked sympathetically with me, but she never initiated a call herself, and caring for herself and her daughter seemed like as much as she could handle. William felt like a lifeline, and we talked frequently. I mentioned the possibility of him flying out to help, and he didn’t refuse but certainly didn’t jump at it either. I wondered what the cost of him coming would be, both financially and in relationship capital.

  I want my mother, I thought. If my mother were alive, she would already be on an airplane to come help me. She would fly me home—I would have a home to go to, I thought, imagining the renters who occupied my own house—and she would ask me what I wanted her to cook for me. I’d tell her vegetable beef stew and homemade multigrain bread and caramel brownies (my new, useless diet be damned), and she’d bring them to me in bed. She would stroke my hair while I fell asleep with my head in her lap, and I would know without question that she’d help me figure out what to do.

  Okay, Julie. Back to reality.

  I felt as though my net of connections had frayed, and now I had fallen and was crashing through it. I couldn’t quite believe it: Wasn’t there someone, somewhere, who would come in and take care of me when I so obviously needed it?

  My computer dinged with an e-mail from a coworker, Susan, who had heard I was ill and wrote to ask what she could do to help. She explained that she lived alone and whenever she had
a crisis, friends and neighbors bailed her out. “So my deal with the universe is that I try to build up karma by picking up other folks’ prescriptions, etc., in hopes that friends and strangers will keep stepping in to help me out.” She offered to cook for me, clean my house, shop for groceries, or even to sleep on my couch to keep an eye on me. She closed her e-mail with, “Please, PLEASE call/e-mail me.”

  I sobbed.

  Then I called Susan up: Could she help me make stew from the massive quantity of vegetables I had bought on Sunday and didn’t have the strength to cook? “I’ll come tonight,” she said.

  Then I tried to think. Clearly, I needed to get out of DC and go somewhere where I knew people and could get around. A cousin in Berkeley was going out of town for a week—perhaps, I thought, I could go back there, stay in her house (and hence not impose on William), and find a doctor. At least I’d have my car, and I’d be in a town I knew, and I’d be with my boyfriend again. The only problem was the stairs. My cousin’s house was full of stairs, a full flight up the hill just to reach her front door, and more to get to a bedroom. I couldn’t see how to manage that.

  I talked about this with William, and he offered to let me stay with him for a bit while I sorted things out. I gratefully accepted. Surely I’d quickly figure out what was wrong with me and be able to make some long-term plan.

  My boss agreed that I could do my internship from California, as I was capable. William had a friend in DC I’d met once who volunteered to come help me pack—that is, he volunteered to pack for me while I laid in bed and pointed. I found a not-too-horrendously expensive flight back to Berkeley for Saturday, and Susan agreed to take me to the airport.

  On Saturday, I woke up and found that not only could I stay awake, not only could I walk, I could even carry things upstairs! I laughed with some embarrassment with Susan about it and imagined myself showing up in Berkeley feeling fine, William having a distant suspicion I’d made the whole thing up. Well, I figured, at least I’d get to go have a good time with my boyfriend, and then I could come back and finish my internship.

  At the airport, I settled into a wheelchair, though the move seemed excessively cautious. I decided to walk through the metal detector to avoid an awkward pat-down, but when I stood up, I found I was staggering again. After I was wheeled to the gate, I walked slowly and carefully onto the airplane, found three blessedly empty seats in a back row, and stretched out. It’s okay, Julie, I thought. Sleep and you’ll feel better.

  I was woken by a bumpy descent into Atlanta to find that I was desperately tired, more tired than I’d ever felt before, so tired I felt frantic. I waited for everyone else to exit the airplane, and when I got up to leave, I could hardly even stand, having to support myself on the seat backs. I lurched from one seat back to the next, groaning loudly. The flight attendant flapped her hands and clucked, “Be careful! Be careful! Be careful!” I didn’t have the energy even to glare at her, so I kept my head down as I continued my lurch. Then the flight attendant declared the problem must be the weight of my backpack—though she didn’t offer to help me with it.

  At the end of the long trek out of the airplane, I was shocked to find no wheelchair. The flight attendant told me to wait and it would be along sometime soon. There was nowhere to sit. Perhaps, I suggested through gritted teeth, she might inquire about the wheelchair for me, since I was barely capable of standing. She reluctantly did so, and then she kept gibbering over me, this time insisting I put on my jacket. Finally, I lost my temper: “Look! I’m sick! The problem isn’t the backpack or the jacket or anything else, I’m just sick!” She was silent.

  By the time the wheelchair arrived, I barely made my connection. I had started shivering violently, though I wasn’t cold. When we reached the gate, the wheelchair pusher said in her sweet-as-sugar-pie voice, “Honey, I’m so glad you made the flight. You’re not feeling well and just want to be home.” Teary, I gave her a $20 tip.

  I staggered onto the next plane, not knowing that I could have ordered a special wheelchair that would fit in the aisle. I was so bent over that I could barely support myself on the tops of the seats and was tempted to lean down to the armrests. The other passengers openly stared. I collapsed into my seat and shivered. I pulled my pillow out of my backpack and buried my face in it, hoping no one could hear me crying.

  By the time I arrived in San Francisco, I felt better, and I was even able to walk off the airplane without groaning, using the seat backs just for balance, with mincing steps. The wheelchair pusher wheeled me to the baggage carousel, where William was waiting for me, standing in his familiar blue jacket. I searched his face: What was he feeling, seeing me in a wheelchair? Could he handle this? But I couldn’t read him. I saw the crinkles around his eyes, perhaps some anticipation, perhaps anxiety. I felt terribly small and low in the chair, so I struggled up to standing. William wrapped his arms around me, and I breathed his scent.

  I’d made it home—or at least, as close to home as I was going to get.

  CHAPTER 3

  DOCTORS

  A few days after I returned to Berkeley, William drove me to the office of the only neurologist I could find who had an appointment available in the next several weeks. I felt as though the signal to move was getting lost on its way from my brain to my legs, so a neurologist seemed to be the right choice. As we drove, I struggled with a feeling of unreality: I had never been seriously sick before, never gone to a doctor desperate to know what was wrong with me. Multiple sclerosis niggled at my mind. Or maybe Lou Gehrig’s disease?

  I felt my mother’s horror projecting toward me from the grave. She would have hated to see me sick, but she also would have hated to see me going to a doctor. Christian Science was central to her conception of the world—including the religion’s rejection of medicine. When her bowel became obstructed, she hesitantly saw a doctor and even agreed to surgery, but she would never have gone back if I hadn’t insisted on it. She didn’t even fully acknowledge she had cancer. “That’s what they say,” she would sniff.

  My only significant experience with a doctor had been when I was 16 and a freshman in college. I developed a robin’s-egg-size cyst next to my vagina, and the throbbing pain in my groin shooed me into the doctor’s office fast. When the first doctor I went to refused to treat me without a parent’s permission, I huffed out. I sure as hell didn’t want to ask for my mother’s permission—that was bound to be a battle. But even more, I was morally offended at the idea that I wasn’t allowed to make decisions about my own body. The next doctor treated me without hesitation and told me I had to have surgery to cut open the cyst.

  When I told my mother, she cried, “You’re going to let them cut into your sacred body!” and then she refused to talk to me for several days. In the past, I had always scurried to appease her when she was upset, but this time, I felt a shocking urge to roll my eyes. Despite her histrionics, I knew the real problem wasn’t the surgery—it was that I’d excluded her. If I’d included her in the decision-making process, I was pretty sure she’d have gone along with it. Anyway, I knew I’d already thought about the problem in the ways her Christian Science mindset dictated: I considered whether it had any emotional significance in my life (not hard to figure, given that I had just started having sex); I worked to unravel my own fear about it; I believed that internal psychological and spiritual work might cure it (though it hadn’t, at least so far). But I didn’t share any of that with her—I am not interested in discussing my vagina with my mother, thank you. And if she was upset about that, well, too bad.

  A classmate took me to surgery and let me recover in her dorm room. The following day, my mother told me stiffly that a friend of hers had told her that she should apologize. “So I’m apologizing,” she said, her voice flat. I had never heard her apologize before, and I felt pleased but uneasy: What did the word “apologize” mean, coming from her? I gradually realized that it was mostly an agreement not to discuss it again.

  The surgery was, in my view, a smashin
g success. Within a day, I had no more pain, and within a couple of weeks, I was back to having sex. My mother might have argued that it didn’t solve the problem on the real, spiritual level, that the cyst was a manifestation of deeper dynamics within myself that I hadn’t addressed and that would thus crop up elsewhere in my life. But I wasn’t so convinced of that. Having surgery directly addressed one important dynamic in my life: It established a needed boundary with my mother. The surgeon’s knife that had sliced through my cyst had also sliced through an emotional cord binding us too tightly together. I figured I’d done the precise psychological and spiritual work the cyst was demanding of me, and I believed God himself would have approved.

  As William and I drove to the neurologist’s office these years later, though, I felt as though my mother were scolding me from the dead. I wanted to growl at her: What the hell do you want me to do now, Ma? I’ve been trying to grow my way out of this illness psychologically and spiritually for years, and look where that’s gotten me. And you’re certainly not here to help. Am I really supposed to be this sick without getting care from a doctor?

  William’s voice, tight and halting, interrupted my internal conversation. “Some of the possibilities we’re facing,” he said, “I’m not sure I can handle.” He was looking straight ahead at the road, showing me only his hawkish profile.

  The air in my lungs crystallized into frozen daggers and my mind turned to static. Dimly, I realized I was supposed to say something. “Okay,” I mumbled.

  I closed my eyes and let the static engulf me. Do people really just decide they can’t handle something? Wish I could decide that and escape whatever the hell this is. But yeah, I suppose we’ve only been together a few months, so what do I have a right to expect from him? I felt as though the two feet between our shoulders were expanding as the whole world receded, leaving me hurtling through empty space.