Misdiagnosed

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Misdiagnosed Page 6

by Jody Berger


  And then we did. For a while. Long slow inhales and longer, slower exhales. We sat breathing together, inhaling as one and filling up on each other’s energy until we couldn’t not touch each other anymore. Then we made love right there on the floor and eventually moved to the couch. Maybe it was the big orgasms that followed my first meditation session that glued me to the practice. Or maybe not. Either way, I’d been practicing daily since then.

  Most days I found the practice calming. Now, though, when I sat, I found it hard to stop the lousy cycle of scary questions about my health. At forty-three years old, I was scared and wanted mothering. But I didn’t feel like there was anyone I could ask for that, definitely not my mom. Through most of my adult life (and probably back into childhood too) when I faced difficult situations or stressful choices, including my mother in them only increased the level of difficulty.

  College graduation, for example, was stressful. I had no career plan and a mountain of debt. My father came to the graduation ceremonies, and my mother was furious that he was there. (My parents had divorced when I was twenty.) She was equally livid when I got married. Not that she didn’t like my husband; she did. She loved him and was angry with me anyway for reasons she couldn’t articulate and I never understood. Then, when my husband and I threw a dinner party to celebrate our relationship, my mom was outraged. Our friends brought gifts and stood to toast our happiness. My mom sat quietly throughout and called a few days later to tell me she was disappointed. “It just wasn’t enough,” she said.

  And finally, and maybe hilariously if you’re anyone other than me, my mother wound herself up to another stratospheric level of rage when I decided to get divorced. “You’re jumping off a cliff. I won’t stand for it,” she thundered into my voice mail. We didn’t talk for months.

  Needless to say, my mom wasn’t someone I turned to in a crisis. Whatever was going on in my body, I wasn’t going to tell her. The diagnosis was difficult enough. And at this point, she thought I was in India and I had no need to tell her otherwise. Same with my sister.

  My father, however, was another story. While my mom remarried straight away, my father never did, and over the years, we developed a loving father-daughter relationship.

  In his sixties, my dad was diagnosed with diabetes. I was living in New York at the time, and once he was diagnosed, he waited until his next visit to tell me about it. We went to Katz’s, an old-school deli that opened its doors in 1888. The place still had signs on the wall from World War II—“Send a Salami to your boy in the Army”—and waiters who probably started working around the same time.

  My dad tested the remains of his Yiddish with the waiter and ordered a Dr. Brown’s Cel-Ray soda and a pastrami sandwich for lunch. I ordered eggs. We talked about the Yankees, President Clinton, and whether George Pataki could get reelected as governor. When the plates were cleared, my dad told me he’d seen a doctor. First, he said, he’d lost a lot of weight then had to urinate all the time. The doctor ran blood tests and declared it diabetes.

  He finished the story and ordered pie for dessert.

  On a night in early January, years past his diabetes diagnosis and days past Silver’s diagnosis of me, I called my dad. He was surprised to hear from me. I told him I canceled my trip and the reason. He stayed quiet and listened. I told him that I didn’t believe the diagnosis and that I was going to go to Vancouver to seek other opinions.

  “Do you want me to come?” he asked.

  In his seventies then, my father still practiced law. He was prepared to clear his calendar for two weeks to spend time with me in Vancouver. I was touched. And surprised. That might be what normal families do for each other—or it may be my fantasy of normal—yet I didn’t expect it.

  “No, no,” I said. “That’s OK. I’ll be there for two weeks. If I get there and I want you to come, I’ll call and let you know.”

  “Are you going to be in a hospital?”

  “No, I’m staying at a friend’s place, and I’m seeing a number of specialists.”

  We talked a while longer and I told him I’d call from Vancouver. I went to sleep happy that I had talked to my dad and glad to know that he was there and that he understood.

  In the morning, I considered who else I would tell. Friends were tricky. I still didn’t feel like I knew the story, how anyone would react or what questions they would ask. Lauren’s comment still stung: “He’s fine. He gets around OK. He has a guy who lifts him out of bed in the morning.”

  JD was an unknown. A friend of a friend whom I’d met a few years earlier, JD and I liked each other and weren’t particularly close. Not knowing I was supposed to be in India or about to go to Vancouver, he emailed me in early January and we made a date for lunch.

  By the day we met, I had finished taking the steroids. I was feeling more optimistic about the whole prognosis and was taking ownership of my health—looking at other resources and reviewing my options. And physically, the morning we were to meet, I felt great. The tingling was down to a minimum, back to where it was pre-steroids, and the sun was shining and my energy surging. I wasn’t sure how much I was going to tell JD, if anything. I figured I’d know when I saw him.

  A little before one o’clock, I walked around the block to the restaurant. When I was within twenty yards of JD, the tingling kicked up, creeping up my arms from my hands and making itself known in my feet.

  Interesting, I thought. I wondered what caused it. We hugged and I felt awkward.

  The restaurant was closed, so we walked a couple blocks to another. We got to the second restaurant and sat down on the clunky wooden chairs, and I felt a new sensation, a tingling centered on a spot in my low back and firing down both legs, not unbearable but definitely distracting.

  I took note of it and wondered whether this was temporary or if this was the start of something permanent. I pictured Joan going blind and heard Silver saying he didn’t know how the disease would progress. Anything could be a symptom, and any feeling could be a warning sign of something awful and sudden.

  As I wondered about this, I tried to shake off my fear of the future and stay in the present. Stay right here, right now, right here, right now, I told myself. I tried to note without judgment what I was feeling and to focus on my friend and our conversation.

  The conversation, however, was dark. JD had left his most recent girlfriend and although he talked about saying good-bye as if she were someone he knew from the office—“There was nothing wrong, we just couldn’t work out the logistics”—he seemed pretty down about it.

  At the moment, I was concerned for him and worried about me. The more we talked, the more the gently distracting pins-and-needles feeling morphed into a high-volume prickly sensation that started in my lower back and demanded attention. I considered panicking. I took a breath and noted what was happening.

  Eventually, we paid our bill and stepped outside into a gorgeous Colorado day. The sunlight clashed with our gloomy lunch. We hugged and JD jumped on his bike and pedaled north.

  I started walking the two blocks south to my house. As I crossed the street, I noticed that everything was calming down. A half block later, the tingling retreated all the way back into my extremities, just fingers and a touch in my toes. When I stepped inside my house and sat down on the couch, everything was as it had been before I went out. Relieved to feel closer to normal again, I was also strangely fascinated that the physical sensations could come and go so quickly, seemingly dependent on emotions that were neither mine nor spoken out loud.

  I emailed Joan right away and told her the story. “Do you think lesions on the spinal cord create a kind of superpower?”

  “Yes,” she wrote back. “We have a lot in common.”

  She and I didn’t get to talk about it so I don’t know what she meant or if she could explain how it worked. My friend Joe, however, came through when I told him about it. “Wow, forget MS,” he said. “
You’re like a human mood ring.”

  • • •

  That night, I dreamt of a snake. He was a pale, earthy tone from tip to tail, and I was not afraid. He sat coiled and quiet right at my feet and seemed to belong right where he was. He held my gaze with his and never wavered as he slowly started growing taller, rocking slowly, methodically, almost imperceptibly, right and left, right and left. When his head reached the height of my belly button, he silently and smoothly veered left and wound his way over my hip and around to my back.

  In the dream, I was translucent. I could see through my skin to watch as he started at the base of my spine and began winding his way up, the way a snake slowly, luxuriously, winds its way around something straight and true. When he had wrapped all the way up my spine and his head was circling my neck, he continued out in front of me and turned back to face me.

  We were face-to-face, nearly nose-to-nose, and I was still unafraid. I don’t think he spoke. He may have. Or he may have let me know wordlessly. Either way, when I was looking into his eyes, I understood: we are in this together.

  We held each other’s gaze a while longer, and the snake made sure I understood: we are in this together.

  I woke the next morning knowing I was going to find the answer. Whatever was going on in my body, I was going to be OK and the answer would be found inside me. Different parts of me needed to weave their way back together perhaps, but there was nothing in me that did not belong and nothing I needed that I didn’t already have.

  In other words, there was nothing to add and nothing to remove.

  I decided I could become calm and leave all the chaos on the outside. I could distance myself from the noise coming from Silver and Joan, the med tech in the MRI room, the nurse in Silver’s office, and anyone else who was telling me about me, insisting that I was damaged and had to follow directions to stay still.

  Inside, I was whole and complete and perfectly healthy, if only a little disconnected.

  We are in this together. The snake in my dream was me, or a subconscious part of me talking to me, saying, “We are in this together. Trust me.”

  And, as if to make sure I trusted him (or perhaps trusted myself), the snake made sure I saw him again and again. After my morning meditation, I made some tea, ate breakfast and went to my office to continue researching drug treatments. As I clicked on the American Medical Association’s home page, I saw a snake wrapped around a spine. It’s the rod of Asclepius, the Greek god of healing, the website explained, and it evokes the serpent-entwined staff that Moses lifted in the book of Exodus: everyone who looked upon it was healed.

  Everyone who looked upon it was healed.

  Holy shit.

  In the afternoon, I went to a yoga studio to stretch with other people. The instructor, a beautiful woman with dirty blond hair, started talking about Kundalini—a Sanskrit word that means “coiled,” like a snake. “Kundalini energy,” she said, “sits dormant, coiled at the base of your spine. And when you are ready to awaken, she rises and travels up and around your spine, lighting up each chakra.”

  I walked home feeling the usual post-yoga calm and something more than that. I felt quietly energized, ready to climb, one rung at a time if I had to, back to better health. I was almost eager to see what I was made of, to understand the inner workings of me.

  CHAPTER 6

  Oh So Radical

  As the plane made its final descent, Vancouver sparkled just out the window, just off the wing, as it always does. A gorgeous city, surrounded by water and sky, it looked, smelled and felt like love to me. I’d never been before I met Bruce, and since then, I’d gone every couple of months to see him. As undefined as our relationship was, he and his city were irresistible to me.

  I walked off the plane and through the familiar airport, smiling past the indigenous waterfowl display and listening to the recorded whistling and cooing. I always found those staccato chirps both silly and soothing, like I was entering an exotic new world, a playful place just waiting to be explored. And on this trip, more than most, I was exploring.

  Back in Denver, before takeoff, and before the snake dream, I was a small, trembling girl terrified that the feeling in my fingertips was a sure sign, as Silver said, of horrible things to come. Hopped up on steroids, I curled in on myself to shield myself against an awful future. A few hours at altitude always delivered a complete change of attitude, however. I was a whole new me: optimistic, confident and marching into adventure; looking for information in a sunny, sparkling, cosmopolitan piece of Canada. The tingling feeling was still there, but its significance seemed less certain.

  In my reporting days, every flight led to a new collection of characters, a new story line and a brand-new chance to get it right. If the last story wasn’t good, or even if it was an outright disaster, catching a flight meant leaving it behind and getting ready to tackle another. I felt the same way now, although I was on my own assignment, searching for clues to gain a better understanding of my health so I could write a happier ending.

  The birds chirped and people flowed onto the moving sidewalk. I breezed by the whole scene and strode the length of the airport, past dozens of gates and sleepy crowds waiting to leave. Along the way, smiling volunteers in Vancouver 2010 golf shirts said hello and asked, “Can I direct you toward the credentialing tables?” No, not this time. I didn’t need credentials. The Vancouver Olympics were only weeks away, and journalists were starting to arrive. I wasn’t one of them. I didn’t need to sign in or find a bus to the press center.

  I needed information, that’s all. And not just a little bit—I had that. I wanted a wealth of information, a diversity of opinions and ideas.

  I walked the switchback lines to the customs agent, had the usual chat—“vacation,” “staying with a friend,” “thank you, sir”—and grabbed my bag off the carousel. I found Terry waiting among the limo drivers holding name cards just beyond the glass doors.

  A tall, gentle guy in his early thirties, Terry was a friend of Bruce’s sons. He became part of the family and had ultimately started working for Bruce. As far as I could tell, his job was doing whatever Bruce needed, asked or suggested. In the time I’d known them, Terry picked me up at the airport a handful of times, worked on Bruce’s house on Pender Island, and spent six months in India when Bruce suggested he learn to meditate. This time he was there because Bruce was still away on business. He’d be joining me later—and I couldn’t wait to see him.

  Six feet tall with an easy smile, Terry is friendly and sweet in a such a pure way that it’s hard to imagine that he spent years living a more dangerous and mistrustful life. Tattoos over his arms and back are souvenirs from that era. “You look great,” he said, giving me a speedy hug. “You look like you’ve lost weight.”

  “Yeah, I’ve been sick,” I said.

  I can be a real downer at times.

  Terry took my luggage to the black Range Rover (Bruce’s, of course) and opened the door for me. As we left the airport, I told him about the diagnosis. He knew someone with MS and said she seemed to be doing OK. I told him about the steroids and how they made me crazy, that they made me lose weight. “That’s weird,” he said. “Guys at the gym take ’em to put on pounds.”

  Terry drove me to Bruce’s apartment, a beautiful three-bedroom place with floor-to-ceiling windows in the living room and kitchen. I could sit at the counter, enjoy a cup of tea, and watch sailboats bobbing in the harbor and runners jogging to Stanley Park.

  The master bedroom, at the end of the long hall, was warm and cozy. On top of a tall, dark wooden bureau, there was a large glass plate on a stand. Two and a half feet across, the blown glass had hundreds of soft brown Buddhas sitting in concentric circles. When I lit the candles behind it, Buddhas danced around the room.

  The bed was luxury-resort comfy, and when I pulled the drapes, the room was dark as a deep cave—perfect for a solid sleep. Just looking aroun
d, I knew I was going to have one of those nights in which I’d nod out as soon as the covers landed on my chest. I’d wake in the exact same position, fully rested, ten or eleven hours later—something my mixed-up body desperately needed.

  In the bathroom, there was a wonderfully deep tub with an assortment of candles and a separate glass-walled shower. Given that I hadn’t gone to the Quiet Healing Center in India because of this mysterious illness, and given all that had transpired since I canceled that trip, this place felt like a lovely second choice. It felt safe. I felt like I could breathe here.

  My optimism was so sweet and strong that all of Vancouver seemed to be on my side. When Terry left, I walked outside and for the first time in what felt like months, the fog lifted from my brain and I saw the world in clear detail again. I saw people smiling and laughing. There were Japanese noodle shops and warm Italian restaurants, a store with high-end bikes and others with trendy shoes and cashmere sweaters. There were people everywhere, and all of us were an easy walk from the water, where the boats were bobbing in their slips.

  I walked into the grocery store, and a woman handed me something warm and yummy to taste. Another woman, when I realized I had only American dollars, said, “No problem, I can convert it for ya. Do you want change in Canadian or U.S.? Should probably have some Canadian, right?”

  As I walked back toward the apartment, I was grateful for this temporary sanctuary in the West End of Vancouver. And I was grateful that my nervous system was calming down. I felt like I’d been on speed since the MRI, and now, finally—finally—I could take a moment, take a breath and figure out what was happening. I was ready to learn about my health and work to regain it, with someone who had a different perspective.

  And Christopher certainly had a different perspective from Dr. Silver in Denver. And a different, more animated demeanor.

  A tall, skinny guy with dark hair, Christopher looked like he could spring forward at any moment, like a runner off the blocks. “MS is generally a bullshit diagnosis,” he said immediately upon meeting me. “It’s a catchall that doctors say when they don’t know what else is going on. What did the neurologist tell you about it?”

 

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