Misdiagnosed

by Jody Berger

  “With your brain chemistry, you need aerobic exercise where you get your heart rate up for thirty to forty minutes at least four times a week,” he said.

  “I can do that,” I said. And truthfully, I’d been feeling a little sluggish lately, like I needed more exercise.

  “Also I recommend supplements, fish oil a thousand to two thousand milligrams a day, coenzyme Q10 and a vitamin B complex once a day,” Darmal said. “And vitamin D3, five thousand IUs a day until you get your level up and then go back to two thousand IUs a day.”

  He also suggested that I take phosphotidylserine, a component of cell membranes, and a GABA receptor, which would help reduce anxiety.

  Finally, he suggested yoga and meditation, and if balance was a concern and I wanted to work on it, he said I should try Dance Dance Revolution.

  Fish oils and vitamins B and D? Check, already on ’em. And meditation? Got that going. It wouldn’t hurt me to spend more time in a yoga studio, and Dance Dance Revolution? A Nintendo game? Fabulous.

  “I can do all these things,” I said with a cheerleader’s enthusiasm that my next thought quickly quashed. “That’s great…What about the MS?”

  “I’d rule it out,” Darmal said. “I looked for a long time at the MRI, trying to find demyelination, and I saw only a little evidence of it. I think the anxiety and depression are the real issues for you. If you’re worried about the demyelination, you can try a hyperbaric chamber. They’ve had good results with that.”

  “I don’t have MS?”

  “I don’t see it. There are areas of your brain that need to be cooled off and others that need to increase their activity for you to feel your best,” Darmal said. “The program I’ve outlined for you here will help. Do you have any questions?”

  “No,” I said. “I don’t think so. I might later. Well, I guess I do. So just to be clear on the MS…”

  “Yes, I can see how that’s stressful for you, and given that anxiety is an issue for you…But no, I wouldn’t worry about it. The diagnosis was premature. I don’t see it. Don’t worry about it. Just take care of your brain.”

  And with that, I couldn’t think of anything else to ask. I packed up my notebook, filed the photos of my brain back in the ring binder he gave me and stood up to leave. Mentally, I was already celebrating the fact that another doctor with a wall full of fancy diplomas checked my MRI and four more descriptive pictures of my brain; thoroughly reviewed my medical history; ruled out MS; and prescribed fish oil, yoga and a video game.

  “Start with the supplements I’ve prescribed, and if those don’t help with the anxiety and depression, you might want to try Lexapro, an antidepressant,” Darmal said. “Make a phone appointment and let’s talk in six weeks.”

  I shook his hand, thanked him profusely and floated out into the Southern California sun.

  Jonathan and I hugged in the airport and boarded flights to go our separate ways.

  The next day in Denver, my suitcase lay unzipped near my closet with clothes and shoes spilling onto the floor. I didn’t want to unpack because I didn’t want the trip to be over.

  I loved California every time I had gone, and on this trip, I had checked off the top items on my wish list: a respected medical specialist said it was not MS and prescribed yoga, meditation and nutritional supplements; the sand massaged my feet; and Jonathan and I enjoyed great conversations.

  I started to sort the laundry in my luggage but then stopped. I wandered into the kitchen to put on water for tea and went into my office. I fired up the computer, opened my email and found a note from my mom. I had almost but not quite forgotten about the nastygrams she’d sent before I left town. I’d almost but not quite buried the memory of my mom bringing up an incredibly humiliating incident from my childhood, telling me that I was killing myself like my father, and that I would waste all my money if I went to the doctor I liked.

  I was already sitting at my desk looking at a message without any words in the message bar, just “No subject” next to her name. I considered deleting it unopened and didn’t.

  We have been at this place before and I am done with it. I am furious at the way you treat me. While you are not responsible for my feelings, you are responsible for your behavior, which is about the meanest way I have ever been treated by anyone. You are cruel and selfish. I will not put up with it. I am through feeling sick and depressed.

  I sat still and listened for my breathing. I couldn’t hear it over the loud whistling that sounded like a train coming through my house. It took a moment to remember the teakettle.

  I walked into the kitchen and turned off the stove and set the kettle aside. I found my phone and called my dad. I told him about her note and waited.

  “All those years, I was public enemy number one,” he said. “Now, it looks like it’s you, kid.”

  “I don’t even know what she’s talking about,” I said, “What did I do that was so mean? Get diagnosed? See different doctors? Not see her doctor?”

  I forwarded the email to him while we were still on the phone. I hoped I had misread it, that I was missing something that he could explain.

  He took a minute to read her words and said, “Has she gone off her medications or something?”

  “What?”

  “Something must be wrong with her,” he said.

  “Yeah, she’s cruel. That’s what’s wrong.”

  “C’mon, Jo. Don’t say that. She’s your mother.”

  We got off the phone, and I took my dog outside for a walk to clear my head. As Riley and I wandered the neighborhood, I wondered how my mom could interpret my health scare as something I was doing to hurt her. Also, how long she had been “feeling sick and depressed,” and how often had she blamed me?

  Riley trotted along wagging her tail, as if her default mode was joy and she needed no reason to be happy.

  Maybe my mom’s default mode was anger. For all those years and all those events where she was angry at me—my childhood stomachaches, my college graduation, my marriage and divorce, and now this—I always wondered what I had done wrong. Maybe the answer was nothing. Maybe she was angry first and found fault with me second to give reason to her rage.

  When I got back to the house, I answered her email as thoughtfully as I could, explaining that I didn’t understand what I’d done to hurt her and that I hoped she could understand that I was scared too and also needed kindness.

  I didn’t hear back.

  CHAPTER 13

  Bikes and Hammers and Nails

  I owned a beautiful bike. Black, sleek and strong, it was built with carbon fiber and California cycling genius. It was a gift from Bruce and weighed nearly nothing. For several months, it had been standing against a wall, looking neglected.

  Three days after I flew home from the Amen Clinic and two days after I said so long to my mom, I pumped up the tires, found a pair of cycling shorts and filled a pair of water bottles. My loft downtown sat two blocks from the nexus of an eighty-mile system of bike paths. I had no excuse. I hopped on my bike and rode along the South Platte River. I pointed toward Chatfield Reservoir, which would be thirty-eight miles round trip, though I knew there was no way I would reach that today.

  I rode for twenty minutes before I needed water. Uncoordinated, and not confident enough to pedal and drink, I stopped the bike and pulled over. I took a long pull on my water bottle and realized I was done for the day, or I would be soon. I turned around to head for home. First day: forty minutes. Not epic but not bad.

  One fine day, I’d make it to Chatfield. In the meantime, I wrote “Bike 40” on my calendar and colored it green.

  The next day, I went to the yoga studio and wrote that in my calendar in green too. I planned to ride every other day and practice yoga in between with one day off each week. If I wrote it down and color-coded it in my calendar, I’d have no way of convincing myself I’d been exercising
if I hadn’t. There would be ample evidence in green or there wouldn’t.

  At the Amen Clinic, Darmal had prescribed exercise and meditation. The good doctor said my brain needed both, so I promised myself six days of one and seven of the other each week. I’d been sitting nearly every day since December. In the beginning, ten minutes seemed an eternity and, simultaneously, a throwaway event. You can do anything for ten minutes, I’d tell myself, as if the time were inconsequential. Then Darmal told me there were consequences, and good ones at that: better brain health! This was the treatment plan. Exercise and meditation were medicinal, and they were medicine I could live with. No side effects, no scary pharmaceutical companies and no contrived research studies. Meditation had history on its side—thousands of years in dozens of cultures. I bumped the timer on my meditation app up to twenty minutes.

  After four weeks of daily meditation and bike-yoga-bike-yoga-bike-yoga, I added another five minutes to the meditation and distance to the rides.

  One afternoon, I pedaled along the Clear Creek Trail from Denver to Golden, a fifteen-mile stretch with a four-hundred-foot climb at the end. As I pushed up the incline, I thought about Martin, whom I still had an appointment with the following week. Originally I’d thought I’d move to Seattle or Vancouver for three months of treatment with him to see what he could do. Now it seemed unnecessary. And a bit dramatic.

  The conversation with my mom may have had something to do with my change of heart too. But I hoped I had reconsidered only because relocating seemed like something I’d do if I were really sick. And I wasn’t. Dr. Darmal said so.

  As I struggled up the path around North Table Mountain, I pulled my water bottle from its cage, drank a bit and poured some over my neck and back. For the twelfth day in a row, the temperature hovered in the nineties and I chose to ride at the peak—late afternoon when the asphalt sends as much heat up as the sun sends down.

  I pedaled and reviewed the previous six months and the doctors I’d seen. I wondered whether I’d been running in circles and knew the answer was yes. I’d been running from doctor to doctor saying some variation of “Can you fix me?” It seemed pathetic, and yet I understood what drove me. The tingling felt strange and stuck around, so I knew it meant something, the way a persistent runny nose could mean allergies or a worsening cold. I wanted to know what caused it, and Silver’s explanation had terrified me, as much for its finality—MS is permanent—as for its unpredictability—waves of symptoms come and go, each one worse than the one before until the game is over.

  And Silver was the lone voice on the record that health insurance companies used to determine rates. The other doctors told me it wasn’t MS, but since I paid out of pocket, they didn’t automatically make notes in my record, and none gave me an official-looking letter declaring me disease-free. In the world of insurance companies it was my word against Silver’s, and he had medical degrees.

  In the real world, however, the one that existed all around me as I pedaled onward, I decided I was going to be fine. I looked down at the computer on my handlebars. Ninety-some degrees on an incline and I was still tooling along at sixteen miles per hour. Not bad.

  I’m better than fine, I thought. If I were broken, and really needed fixing, I couldn’t handle this hill or this heat.

  Then, of course, I heard it. “On your left,” some guy yelled. Two guys in matching jerseys powered past me as if I had two flat tires and was hauling a trailer.

  They made it look easy, almost effortless. And that is the blessing and curse of living in Colorado. The place is lousy with endurance athletes. Everywhere you look, there’s some guy who rode in the Tour de France or won the Leadville Trail 100 mountain bike race, or there’s some woman running six-minute miles while pushing a baby stroller.

  A few years before, I had taken my dog for a hike to Silver Dollar Lake. I drove through Georgetown, over Guanella Pass at eleven thousand feet and along a winding, one-lane dirt road. Wearing hiking boots and a baseball cap, I brought water for me and Riley, snacks for both of us, a topo map and sunblock. On the trail, I stepped over roots and logs and rocks while Riley bounded over and through it all. About ninety minutes into this hike, I’d built a solid sweat, even Riley was starting to slow down, and we saw two women coming toward us on the trail. They were moving quickly with minimal gear. No backpacks, no water bottles.

  When they came closer, I could see that they were muscular and tan and beautiful in that rugged, outdoorsy sort of way. They were probably in their sixties, and one was wearing sports scandals and the other Birkenstocks. Aging hippy chicks were killing me on the trail.

  On my way to Golden, I smiled at the memory and pedaled a little faster.

  When I was putting my bike away a few hours later, the phone rang.

  “How ya doing, Jo?”

  “Pretty good, Dad. How about you?”

  We talked for a while, and he caught me up on my sister and her kids. He asked if I’d talked to my mother, and I said I hadn’t heard from her since the last exchange.

  “How’s your health?” he asked, moving the conversation along.

  “It’s fine. I feel fine. I’ve been riding my bike a lot—went for a good ride today. I have a little bit of tightness in my feet but whatever. I don’t know if the lesions are still there or if they even matter,” I said.

  “Yeah, it’s hard to know,” my dad said.

  “This whole thing just seems crazy. Like Silver saw me coming, and since MS was the number-one diagnosis he gave women like me, he sized me up, checked off a few boxes—woman, young, athletic—and declared MS. Then he couldn’t take my calls questioning his wisdom.”

  “I remember when I took your grandfather to the Mayo Clinic,” my dad said.

  This sounded vaguely familiar. My grandfather was a big, strong man with powerful hands. He was a plumber and built his strength carrying porcelain tubs on his back up flights of stairs.

  “What was wrong with him?”

  “It started as a tingling in his feet, and he lost power in his legs,” my dad said, as if we hadn’t been talking about my tingly fingertips for nearly a year.

  “It got so bad he couldn’t work,” my dad went on. “It took us forever to get an appointment with the neurologist, and when we finally got one, I flew in from law school to take him there.”

  I’d never heard this story before. My grandfather was probably in his late fifties at the time, and I wasn’t around yet.

  “The doctor finally arrives with a harem of residents,” my dad said. “He walks in and says, ‘Mr. Berger, I’m going to refer you to an orthopedic surgeon. You have a pinched nerve in your neck.’ I said, ‘Wait a minute, you haven’t even examined him.’”

  My dad continued: “The doctor says, ‘OK, Mr. Berger stand up. Close your eyes.’ And my dad’s spinning like a top. The doctor says, ‘OK, you can sit down. Were you standing straight?’ My dad says he was. The doctor says, ‘Look over there,’ and he pokes him in the leg with a pen and my dad doesn’t even feel it.

  “One of the residents says, ‘And you should see his walk.’ The doctor looks at the resident like he’s the biggest bag of shit he’s ever seen, but he says, ‘OK, Mr. Berger, could you walk for me?’ And his walk is horrible. He was losing power in his legs.”

  My dad tells the story as if this were just another story. As if I hadn’t been terrified this whole time by tingling. He tells the story of my grandfather calmly, without emotion other than amusement.

  “The doctor says, ‘I’m going to refer you to an orthopedic surgeon. You have a pinched nerve in your neck.’ We took him to the Mayo Clinic. He had the surgery and his health improved until he was in his seventies and the symptoms came back. At that point, they wouldn’t do the surgery again.” My grandfather worked until he was nearly eighty and lived until he was nearly ninety.

  We hung up, and I sat there dazed. I tried to read. I tried to wat
ch TV. I woke Riley, told her she needed a walk, attached her leash and headed outside.

  When we got home, I thought about all the doctors and all the stories.

  The doctor with an MRI machine and a self-proclaimed proclivity to diagnosing MS found MS. The traumatologist found trauma. The neuropsychiatrist found anxiety and depression. And the doctor with faith in a heavy metals test found heavy metal toxicity.

  Add in my family history of tingling in the extremities, the leading expert in Parkinson’s found Parkinson’s in my mother and the doctor who claimed he didn’t even need to examine my grandfather to know what was wrong with him found exactly what he said he would find: a pinched nerve.

  Maybe instead of bouncing through all these doctors, I should have started with a psychologist like Abraham Maslow. He’s the guy who explained the law of the instrument this way: “To a man with a hammer, everything looks like a nail.”

  CHAPTER 14

  Toes and Teeth

  In late September, I rode into the Chatfield Reservoir and, feeling the strongest I’d felt in a long time, considered taking a right to Bear Creek State Park. Turning around and heading back the way I came meant nineteen more miles. Taking the right would add ten more for a total of forty-eight on the day. I pictured the provisions in my pockets and on the bike: a couple of energy bars, a packet of Shot Bloks, keys, cell phone, two water bottles—one half full with water, the other half full with an electrolyte drink. I had plenty of fuel and there were plenty of places to grab water if I needed to.

  I took the turn and started heading into the sun. The fall air felt cool on my arms and the sun warm on my face. The great grassy areas were mostly yellow, and the late afternoon light bathed everything in warmth.

  On a bike, I covered so much more ground than I did at a run, mentally and physically. The rhythmic spinning of the pedals was almost meditative, allowing my feet to do the work and my mind to wander freely while another part of me, a calmer part of me, could simply sit back and observe its path.