Misdiagnosed

by Jody Berger

  “Virasana is hero’s pose,” Mitra said, “and supta means reclining.”

  Around me, the women and one man started leaning back onto their elbows. From there, they settled down further, laying on the floor with their knees still bent and a foot beside either hip. Their faces relaxed.

  Still sitting upright, I studied them in amazement, and with agony in my feet.

  “Here,” Mitra said, handing me a block. “Sit on this and protect your knees. Don’t lean back.”

  I placed the purple foam beneath my butt and felt better.

  “If you keep practicing,” Mitra said, “one fine day, your muscles will lengthen and relax, and you will sit easily into this hero’s pose. One fine day.”

  Yeah. One fine day.

  Class wound down, and we moved to the café for breakfast. Over eggs and avocados, we asked one another questions and listened the way you can when you have all the time in the world and no place else you need to be. When the plates were empty and the coffee long cold, people slowly drifted apart, moving to hammocks or walking on the beach or wading into the surf.

  Late in the afternoon, we found one another again in the palapa and practiced for another two hours before eating dinner together as a group.

  We did this every day—yoga in the morning, leisurely breakfast and fun on the beach, followed by more yoga and more food together. By the end of the week, all of us in this unlikely crew felt like we’d known one another always. And even “one fine day” felt familiar. Or at least the poses felt possible. Not this week, or even this year, but some day. If I continued to practice, I’d get there. One day, I would sit like a hero. I’d even recline and smile.

  On the final morning, I hugged everyone and kissed Mitra good-bye. I promised her I’d come back. We both cried and hugged harder. I flew to Colorado, and she flew to California.

  I didn’t go back to Troncones for a long time, and I didn’t stay in touch with Mitra, or with the others I met on that retreat. I had wanted to, had planned to, but didn’t.

  Back in Denver, other plans took over. Plans that sounded so normal. I got married. We bought a house. We furnished it and invited his parents to visit. And I worked, often and a lot. A recently retired journalist, I called myself a “communications consultant,” but the title was more aspirational than actual. I went to awkward networking events and uncomfortable coffee meetings in search of clients. My husband was also struggling professionally, so I looked for work for him too. At night and on weekends, we drank expensive bottles of wine with other couples and never considered whether we were moving toward something we wanted.

  Not surprisingly, we weren’t.

  My husband, who had been kind, quiet and just out of reach, grew angry and sullen. I matched his anger and added sadness. We tried counseling and gave up. He called a moving company one afternoon and booked a one-way flight back to his hometown of Sydney, Australia. I forced him to meet me at the courthouse to sign paperwork the day he was leaving.

  And then he was gone and I had no one to cry with.

  Three weeks later, I met Bruce and fell for his passion and power. He ran several companies, and when he wanted to see me, he’d move a board meeting to Colorado, forcing a dozen men to fly to Denver so he could work with them all day and have dinner with me at night. Or he’d fly me to France.

  Clients also started showing up, so I had work to do. I didn’t enjoy it, but it paid the bills, and I was flying to Nice on Friday. Or Mexico. Or someplace else to see Bruce.

  When the tingling started, I had a sense that it was a sign. I thought it meant I wasn’t taking care of myself.

  The sensation started in June, ten months after my husband left and nine months after Bruce arrived, and it came and went all summer. One night, in late August, the tingling was enough to keep me awake. As I lay in bed, I tried to think about what would make it go away, what would feel like home.

  Even though I hadn’t seen Mitra in years, I thought of that trip to Troncones. I fell asleep thinking I needed to find her.

  I didn’t have to. One week later I received an email from her announcing a trip to India. She was taking students to practice yoga and tour the temples in her spiritual home. I had a few questions. And I knew that however Mitra answered, I was going to go. Some coincidences are impossible to ignore.

  When I got her on the phone, she squealed. I told her I’d been planning to find her when the email arrived. “Om namah shivaya,” she said. “I bow to the divine that resides within all of us.”

  “Om namah shivaya.”

  We both giggled.

  “You’ll love it,” Mitra said. “We’re going to Auroville. It’s the community Mother started. It’s where she taught.”

  Mother, a spiritual teacher in southern India, was Mitra’s North Star.

  And talking to Mitra, I wanted to see what that felt like. I wanted a North Star. And I knew the trip to India was exactly what I needed—a little adventure in an exotic place and quiet, calm, contemplative time. Simply perfect.

  That was in September. Now, in late December, after my time with Dr. Silver, I had to make other plans.

  I couldn’t call Mitra. Couldn’t ask her advice, couldn’t tell her what had happened, couldn’t hear her voice. However, I could call—and really had to call—Lauren, who was going with me.

  Lauren and I had been friends for a couple of years. She was ten years older and six inches shorter than me, and when other friends sided with my ex-husband in the divorce, she picked me. Or more accurately, Lauren and Pete, her husband of twenty-five years, didn’t pick. They stayed friends with both of us. And at the time, when relationships seemed so fragile, that seemed a huge gift, a kindness I could never repay.

  Lauren hadn’t traveled much internationally. She had gotten her first passport only the year before and was ready to use it. Her husband didn’t like to leave the county, let alone the country, so Lauren suggested that she and I travel together. I told her about India and forwarded Mitra’s email to her.

  Lauren read it and called right away. “Is it going to feel like a bunch of rich American women on a spa vacation?” she asked. “Is it going to feel like any spa anywhere? I want to feel like I’ve gone to another country.”

  When I relayed this to Mitra, she laughed. “When you cross the street, you have to look both ways to avoid monkeys and cows,” she said. “You will feel like you are in India.”

  That seemed to satisfy Lauren, who somehow overcame her hesitation without asking the obvious questions. The week before we were to leave, she asked me, “Did you know that there’s yoga every day?”

  Yes, I knew. That’s why I was going.

  And then at the last minute I wasn’t going. The day before the trip I called Lauren and told her. I didn’t tell her the reason because it didn’t feel safe. I had no idea what was going to happen next, and I wasn’t ready to give away an incomplete story to let others fill in the blanks.

  Not surprisingly, Lauren was unsatisfied. She begged me to tell her. She pressured me. She begged again.

  “OK,” I said finally. “But you’ve got to promise you won’t tell anyone. I don’t know what I think about this and I’m not ready to tell anyone.”

  “Of course I won’t tell anyone, Jody. Just tell me.”

  I told her, and later I went to her house to drop off paperwork she needed for the trip. I sat with Lauren and her husband at their kitchen table. We made an odd threesome. Lauren is small and blond with wire-rimmed glasses. Pete, tall and dark with enormous hands and a full belly, is ten years her senior. And me, well, at that moment, it was hard to know who I was or explain how I got there.

  “My brother has MS,” Pete said.

  “He was diagnosed seventeen years ago and probably had it before that,” Lauren said. “He’s fine. He gets around OK. He has a guy who lifts him out of bed in the morning.”


  My head emptied. Truly emptied like I’d been hit with a right cross to the temple.

  I sat in silence.

  Pete asked if Lauren would be OK in India without me, if Mitra would take care of her. “Of course,” I said in a daze. “Of course. Mitra’s an amazing woman. Lauren will have an unforgettable time.”

  I drove home in shock. He’s fine. He gets around OK. He has a guy who lifts him out of bed in the morning.

  Nothing about that sounded fine. Nothing.

  And it felt dismissive, like, What are you worried about? You’ll just get some guy to pull you out of bed each day too.

  Aside from an initial flurry of emails from Lauren’s friends writing to say they were sorry to hear I had MS and a voice mail from Pete, telling me not to worry, that Lauren was having a great time, I didn’t hear from them after that. I’d never felt so alone in my life.

  CHAPTER 4

  Return to Silver

  Without India, January was a black hole. No plans in Colorado. No calls coming in. I could devote myself full-time to untangling this mess. And as soon as I realized it would be a full-time job, I was exhausted by it and didn’t want anything to do with it.

  After precisely four days, I was done with MS. I didn’t believe it. I didn’t want it. And I didn’t want Silver to believe I had it. I wanted him to tell me he’d made a mistake. I wanted him to apologize and give me back my old life, the one where I could fly to a foreign country without a worry in the world.

  And if he wasn’t going to realize and apologize for the error of his ways, I would do the reporting. I would dig in and find that proof, irrefutable proof, that he’d made a mistake. And of course he would concur and apologize.

  Clearly, I didn’t know doctors that well.

  It didn’t occur to me that I might not trust him. If I didn’t trust him to say I was sick, then why would I believe him if he said I wasn’t? I also didn’t realize, not then, that I could get second and third and fourth opinions, or that my opinion was the one that mattered. With credibility sewn into his white coat and framed in diplomas on the wall, Silver seemed important. His opinion mattered. And I thought I could use the tools of my trade to sway that opinion.

  I went to the back bedroom, my home office, to get to work. I looked out the window and wondered whether I should go to the grocery store or pick up my dog. I wondered whether my car needed an oil change and a half dozen other irrelevant things, all in an instant, before I remembered what I was doing at my desk. Damn steroids, I thought and went to the “Diagnosing Tools” page of the National MS Society website, which seemed to make it pretty clear that this disease was no match for fifteen minutes and an MRI:

  Because there are no laboratory tests or particular symptoms that definitively point to a diagnosis of MS, confirming the diagnosis can be a complex process. It is not unusual for people to be told they have MS when they actually have something else, or for the diagnosis to be missed in people who actually have MS. Before confirming an MS diagnosis, the doctor must rule out any other condition that could be causing your symptoms.

  For a doctor to rule out MS, the site listed eight items, including Lyme disease, lupus, genetic disorders, structural damage to the spine and a vitamin B deficiency. I didn’t want lupus or a genetic disorder, but a vitamin B deficiency sounded pretty good.

  I Googled on. Over a variety of websites, I found convergence on the three requirements to diagnose: a doctor must identify multiple episodes, identify multiple lesions, and rule out everything else.

  I believed that Silver had seen multiple lesions. I’m sure that’s what he was trying to show me when he flashed the black-and-white image on his computer screen. Of the other two items, identifying multiple episodes and ruling out everything else, I felt shortchanged—as if I’d been sentenced without standing trial. I made an appointment to see Dr. Silver again and started writing down a list of questions.

  On a yellow legal pad, I wrote down “hepatitis A,” “polio booster” and “tetanus.” Because of the India trip, I had just had shots for all three. Did that matter? What about heavy metal toxicity? Could that be the cause of this? I had seen a chiropractor who said my spine was out of alignment. Could that be what this is? The tingling gained volume after a stressful day at work and an aggressive session with the chiropractor. Doesn’t that mean something?

  I’d had digestive problems several months before the tingling started. And a weird rash months before that. The dermatologist I saw handed me preprinted pages off her prescription pad. Could the tingling be a reaction to the antibiotics and corticosteroids she gave me? Note to self: Where was my “I don’t take medication” story then?

  On January 4, I drove myself back to the hospital and realized I had knowledge I never wanted: I knew exactly where to park and where to check in. I was already writing a check for the fifty-dollar co-pay when the woman at reception called my file up on her screen. “Know how to get to Neurology?” she asked.

  “Yep,” I said, sadly.

  I came armed with a book this time to avoid the hazards in the waiting room. But sitting in the uncomfortable and cold space, I read a handful of pages and couldn’t tell what they were about. Cursing the Prednisone, as was becoming my habit, I started to reread the same pages when a nurse stuck her head into the waiting area.

  “Ms. Berger?”

  She had strawberry-blond hair and a roundish face. I followed her down the hall and into an examining room. Even though I had come armed this time, fully prepared with my book, a list of questions and a sturdy disbelief in the diagnosis, my resolve diminished as soon as we stepped into the harshly lit room. I looked at the metal examining table, the tiny metal sink and the antibacterial soap on the side. I glanced at the collection of diplomas and the tiny chair meant for me. My disbelief withered. My insecurity grew. And tears started to form.

  The nurse might have been thirty years old, maybe younger. By the time she had the blood-pressure cuff up my arm, tears were weighing heavily on my lower eyelids. One at a time at first, they rolled down my cheek. Soon, several at a time were rolling, and finally, whole collections fell in clumps onto the book in my lap.

  And with the tears came a torrent of words. I told the nurse that I’d had only a little tingling in my hands, that it wasn’t painful and couldn’t be permanent. That it couldn’t be multiple sclerosis. I told her that Dr. Silver thought it was multiple sclerosis but that it had to be something else.

  “Tingling is annoying, isn’t it?” she said, and told me that her boyfriend had to add padding to the seat of her Harley because her feet fell asleep. Bewildered, I kept crying. She got the numbers she needed off my arm, wrote them down, and rolled the cuff up and put it away.

  She had me step on the scale. Even with my shoes on, I weighed only 115. I’m five foot six and had weighed 120 since college. “What?” I said. “I can’t be one fifteen. Do you think that’s the steroids?”

  “Probably,” she said. “How long you been on them?”

  “Five days.”

  “You’re lucky. Most people gain weight on them. One woman put on thirty pounds in a week.”

  “Good God, she must have been able to watch herself expanding.”

  The nurse put down the folder she was holding and reached for the door. She looked at me and saw that I was still crying. “At least you’re not in Oncology,” she said. “The doctor will be with you in a minute.”

  At least I’m not in Oncology? Really?

  By the time Silver came in, my tears were dry and I had gone back to the book. I said hello and pulled out my legal pad. He took a seat on the stool near the examining table and opened a folder the nurse left behind.

  “How are you feeling?” he asked. “I’m glad you decided not to go to India.”

  “Look, I’ve got a lot of questions,” I said, launching in. I asked if any of the chemicals recently added to my system—t
he vaccines, the antibiotics, the steroids or some combination of those—could have anything to do with the tingling.

  Silver ignored the question and, like the nurse, tried to explain how much worse life could be.

  “It’s like a bell curve,” he said. “Two percent of the population that has MS never has any symptoms worse than what you have now.”

  “Hmm” was all I managed to say. I had asked about drugs I’d taken, and he ignored my question so completely that I felt like I hadn’t said anything at all. I didn’t know how to say, “Wait, you didn’t answer my question.” I had said some variation of that hundreds of times professionally, but personally, in this scary sterile room, I was at a loss.

  Perhaps the steroids were wreaking havoc with my concentration and my determination. Or maybe the disconnect between my questions and his answer, my assumption of kindness and his absolute lack of it, were too big to reconcile in the moment. Same for the gap between how I was feeling and the severity of the diagnosis.

  That was what seemed strangest—the gap between what my body was telling me and what Silver was saying. I was sitting in a neurologist’s office, on the ninth floor of some building where people go to get growths removed, organs replaced and cancer radiated, and I felt good. My body felt better than good. My mind, on the other hand, was beyond bonkers—doing doughnuts like a Corvette on ice—but my physical strength and stamina were the same as always. I could have darted out the door, down the hall, down the stairs and out the front doors toward City Park. I could have run a 10K if I had to, not with blinding speed but at a respectable one-hour interval. Nothing hurt, all my body parts moved as directed and my mind was sharp as always—or would have been without the panic and Prednisone. The tingling was still in my fingertips and now a bit in my toes, but it seemed relatively minor, like a secret I should have kept and allowed to quietly slink away.

  And I wished I had looked for answers myself instead of calling people on my insurance company’s roster and expecting them to fix me. I wish I had Googled “tingling” or called a series of experts to see what it might mean, told them I was a reporter on a story. I wish I had dosed myself with vitamin B to see what that did, or had tried anything at all to have avoided this meeting with Silver and the one before it.