Misdiagnosed

by Jody Berger

  I avoided any discussion of these episodes until it wasn’t possible any longer. Some weeks later after a particularly messy accident, the nurse told me to wait as a neighbor, Mrs. S, who lived across the street from us, was coming to pick me up, since my mom was working. She gave me a bath, threw my clothes in the washing machine and loaned me her daughter’s clothes to wear. Then she sat at the kitchen table and drank milk with me while we looked at the trees in her backyard. She asked questions, and I told her that art was my favorite class at school.

  I wondered what it would be like if she were my mom.

  When my real mom knocked on Mrs. S’s front door, I said good-bye and walked home with my mom in silence.

  She didn’t mention the episode that day or the next—or the one after that.

  Eventually, however, I experienced the same intestinal distress with a similarly messy result.

  That night my mom yelled at me for it. “You had another accident. Wasn’t it enough that Mrs. S had to come get you, and now she knows about this? Why do you do this? It has got to stop.”

  She gained volume with every word. I looked around for an escape, but no one came for me and, at that moment, deep inside my five-year-old brain, in the part that controls the fight, flight and freeze instincts, I suddenly came to understand that I couldn’t flee; I couldn’t fight. I could only freeze, and I was alone. I was the only hope I had, and no one, not even my mother—especially not my mother—was going to wrap her arms around me and tell me that everything was going to be all right.

  And everything was not all right. Whatever was causing contortions in my belly, it was not all right. It hurt, and it was something to be ashamed of and something to be hidden. I couldn’t tell the neighbor because, although Mrs. S. was incredibly kind, my mom thought it was horrible that she knew. And now I couldn’t tell my parents because my grief and pain and bodily functions caused them so much pain and anger that it looked like they might break apart. And that was no good. I couldn’t have parents who were in pieces. I was only five.

  Weeks later, after I got home from school, my dad came home early, changed out of his suit and the three of us (my parents and me) got in the car. I was wearing my favorite shirt, blue with horizontal red stripes, warm and snugly like a hug. In the car, I thought something special was happening—my dad came home early, and my parents were taking me somewhere. We must be going somewhere good, I thought, so I asked where.

  “We’re going to the doctor’s,” my mom said.

  I thought of Dr. Miller, the pediatrician we saw when my sister or I threw up or spiked a fever. “But I’m not sick,” I said.

  Neither replied.

  When we got to the doctor’s office, I saw that this guy wasn’t Dr. Miller at all. He had no stethoscope, tongue depressor or silly jokes. This guy’s office had shelves of books, a big desk and a couch. There was no glass jar with cotton balls and no white coat. My parents waited outside and the “doctor” asked me to sit on the couch.

  He wore a blue button-down like my dad wore to work and a tweed jacket with elbow patches. I wondered about those. He had a soft face that wasn’t unkind, light brown hair and wire-rimmed glasses. He introduced himself to me and asked how I was.

  “Fine.”

  He didn’t ask what I’d been eating or how my belly felt or anything like that. He leaned across his desk to get a better look at me, small in my striped blue shirt, sitting on his big leather couch. “Jody,” he said, slowly. “Do you have accidents?”

  “Nope,” I said. My mom told me that I should be ashamed that Mrs. S knew. Why would I tell this guy?

  He saw right through my lie and asked why I had accidents. I stared at him without moving, thinking it must be a trick question. I mean, if I knew why I had them, I could avoid them. They were “accidents,” after all. Didn’t he know what an accident was? That it was something you didn’t do on purpose?

  “Nope,” I said again. When my lips came together on the letter p, I resolved that they would stay that way. I did not trust this man. I would not speak to him. I crossed my arms over my chest, tucked my chin and stared at a spot on his chin.

  He asked another question. I listened and stared. He asked one more, and I listened and stared some more. Eventually, he recognized the futility and said, “OK, now I’d like to speak to your parents.”

  The doctor opened the door to let them in and I sat down in the waiting room, which had a short table and matching kiddie chairs, covered in coloring books and crayons. From the big window, daylight flooded the room.

  When the door opened again, my parents came in and the doctor said good-bye. With my parents, I walked back down the hall, into the elevator and outside to the car. The three of us got in, drove home in silence and no one ever mentioned the trip again, leaving me to wonder what it was all about or whether it had even happened at all. Sometimes I thought I just made it up. But I knew the drill. It had happened, but in my family, if we don’t talk about it, it didn’t happen.

  I went back to school the next day and the day after that and sooner or later, I learned to sit still even as my stomach churned and raged. I learned to clench all the muscles in my back and belly so nothing made its way out of my body until I was in the bathroom with the door safely locked. Over time, I got so good at gripping the muscles around my guts that I didn’t even notice I was doing it. I became so skilled at ignoring distress signals sent from my stomach that I thought it was normal, something everyone did all the time. Certainly it was nothing to mention or complain about.

  CHAPTER 12

  Amen to That

  Jonathan and I landed at John Wayne Airport and rented a car to drive the half mile to the Amen Clinic. (It’s California. People drive everywhere.) We had appointments that afternoon, so with our luggage still in the car, we took seats in the waiting room. Before long, a social worker came to get me.

  She had long, dark hair, and clear skin and large, dark eyes. She looked young. And kind—she looked kind. She showed me to her office, told me a bit about herself and asked if I had questions. I didn’t, not right then.

  “OK,” she said and added three unrelated words. We talked a little more about the clinic and how long she’d been there and, after a few minutes, she asked if I remembered the three words. I did.

  Then she opened a file with the fifteen-page questionnaire I had filled out and faxed in weeks before. There were questions about mood swings, sleeping patterns and eating habits. There were questions about my childhood, who I leaned on for support, how often I felt stress and how I handled it. I told her I didn’t have a problem handling stress. And I believed it.

  The social worker went through the pages, confirming some answers and asking about others. When we got to the stress section, we spent a lot of time talking about the MS diagnosis. I hated how it was delivered. I hated how I reacted to it—by canceling a trip I had been looking forward to. I hated the doctor who gave it to me, and I hated him more when he wouldn’t answer my questions or return my calls.

  And still, I was scared he was right. I wanted it ruled out. I asked if the doctor who would interpret and review my SPECT scans could do the same with my MRI. She said sure, so I gave her the CD.

  The interview continued as she asked about my friends, my family, my lover. I told her about Bruce and how he did amazing things like supporting me through this adventure in health, that he was paying for the brain scan I was about to get. And that even though he took care of big things like that, it made me a bit sad that he wasn’t available for simple things, like a Sunday brunch or a midday call. She seemed to understand why that would be hard, and she seemed so empathetic, so friendly, that I wanted to ask her about her own relationship, like we were friends chatting over coffee.

  We weren’t. She was a social worker gathering information about me and my brain. She asked me to count backward by subtracting seven at a time from one hundred. Af
ter a few minutes she stopped and asked for a number.

  “Thirty-seven,” I said.

  She then asked about speeding tickets and traffic accidents, how often I experienced déjà vu and whether I remembered those three words again. I did.

  I thanked her and went back to the waiting room, curious about what she’d learned from asking me to remember three words and count backward. A few minutes later, an imaging technician came to get me. He explained how the SPECT scan worked and told me what to expect. The first day, he would inject me with a radioactive isotope, called a tracer. When he took the pictures with the SPECT scan, the tracer would highlight areas of blood flow.

  We would take two sets of images: one after I’d played a game on the computer and another after I’d sat quietly in a calm, dimly lit room. We would do the same two images on the second day without the tracer.

  “In very rare cases, the isotope causes people’s urine to turn green,” the tech said.

  That’s awkward, I thought.

  He set me up in a small office to play the game, and after ten minutes, he came to take me into the imaging lab. It was a big, open space, well lit with none of the creepy, claustrophobic feeling I’d gotten from the MRI cave five months earlier. The tech was in the room with me, not behind dark glass sitting at a desk and conferring quietly with another person who was never introduced. And the machine itself was less intimidating than the MRI.

  I didn’t have to change my clothes or remove anything to get started. I just sat on the table and lay back to rest my head in a small cradle. I focused on my breathing and lay still while the imaging device moved around my head like the moon orbiting the earth. The camera made a gentle hiss as it glided from one position to another and the tech stood by, checking in with me from time to time.

  I zoned out a bit, fell into a nearly meditative state, and then was surprised when the tech told me we were done. “See you tomorrow,” he said as he walked me back toward the waiting room.

  “How’d it go?” Jonathan asked when he reappeared a few minutes later.

  “Pretty easy,” I said. “How about for you?”

  “Same,” he said.

  That night over Korean food, I asked about urine. “He said it could turn your pee green,” I said. “Mine was leprechaun green, not just a little, but bright, bright green—like the greens at Pebble Beach. Was yours?”

  “No,” Jonathan laughed. “He said it’s really, really rare for that to happen.”

  “I must be special.”

  We talked about the schedule for the next day and what we each hoped to learn from this adventure. I said I wanted to rule out MS and learn what was happening in my brain.

  “And before we go, I really, really want to walk on the beach,” I said. “We’re so close, and I need to walk on sand.”

  “No problem,” Jonathan said. “We can go when you’re done tomorrow.”

  On the second day the scans were just as easy, maybe easier. In the evening, Jonathan and I drove south on the Pacific Coast Highway until we found a beach that looked like a good long walk.

  I immediately took off my shoes and stepped into sand. My feet felt like they’d been sprung from a cage; my toes freed from solitary confinement. “Ooh!” I squealed. “This feels so good. I’m so happy here. My toes feel like we’ve descended onto a whole new planet.”

  “Oh, so this wasn’t just about seeing the water and the sky?” Jonathan said.

  “No, this was a therapeutic outing,” I said. “I don’t know why, but for months, I knew my feet needed the beach. The weekend that we all spent on Pender, I’d been trying to get Bruce to meet me somewhere warm, with a beach, but he couldn’t make it work.”

  After an hour or more of walking, my feet felt completely rejuvenated—and with them, my heart. The flip-flop feeling was gone, and each toe and each little bone in each foot felt like it was moving independently and easily. Before we walked back to the car, Jonathan and I sat on the rocks to watch the sun go down. It was stunning and inspiring, relaxing and reassuring, as California sunsets always are.

  We found a restaurant where we could sit outside to see and hear the ocean. We shared a table with some French tourists, and we each trotted out our limited language skills.

  “Bon appétit,” we said when the food came.

  “Enjoy your dinner,” the Frenchies said.

  The next morning, I went back to the clinic to meet a doctor who had reviewed my questionnaire, MRI, social worker’s notes and SPECT scans. I asked Jonathan if he would come too, just in case.

  Dr. Arsalan Darmal is a diplomate of the American Board of Neurology and Psychiatry and is board-certified in child and adolescent psychiatry. He had dark hair, wore a suit and looked to be in his fifties. He sat with us around a coffee table and handed me two pictures of healthy brains.

  One looked like a Claymation model, sculpted in pastel-colored Play-Doh. The other looked like an engineer’s line drawing, with blue lines showing the outside structure and red and blue lines creating shapes inside.

  The Claymation brain, which Darmal called the 3-D surface image, showed activity on the surface. A healthy brain is symmetrical with a smoothish surface. Unhealthy brains, Darmal said, are uneven or pockmarked or asymmetrical.

  The engineer’s drawing Darmal called a 3-D active brain image. It showed activity in the brain. Black spots mean no activity. Blue means a medium level of activity. Red means high activity, and white means super high. The cerebellum, which is involved in motor control, balance, coordination and cognitive functions, should be red and white, showing very active neurons. The rest of the brain should be mostly blue.

  Once I’d had a moment for the images of model brains to sink in, Darmal gave me pictures of my own brain. Handed them to me, gave them to me, mine to keep. And unlike the hazy gray images of the MRI, these things looked like a brain. My brain. How weird.

  The Claymation one, with its light greens, pinks and yellows, was mostly smooth and looked symmetrical to me. No holes or missing parts. I was pleased.

  Darmal, however, saw something not quite right in the right and left temporal lobes, which can be associated with moodiness, irritability, memory problems, abnormal perceptions, anxiety, spaciness, headaches or abdominal pain.

  As he rolled through the list, I mentally crossed or checked off each item. My mood did ride up and down often—which I attributed to blood-sugar surges and dives—and abdominal pain was a fairly common occurrence. I didn’t think I had memory problems, but maybe I just didn’t remember them. Mostly though, I’d been ignoring all these symptoms. I thought they were normal and it hadn’t occurred to me that they didn’t have to be.

  “This could be related to trauma,” he said.

  I thought of Martin saying I was more trauma than illness. And again, I wondered, What trauma? I’d never broken a bone, never been hospitalized, never been to a war or experienced physical assault.

  “You also have mild decreased activity in the prefrontal cortex, which has to do with attention and motivation,” he said.

  This triggered something deep. I’d always thought I was an underachiever, that I couldn’t focus or stay motivated.

  I looked at Jonathan. “Breathe,” he said.

  I really didn’t want another doctor to tell me there was something wrong with my brain. Until this moment, despite flying all the way to California to have someone examine my brain, I hadn’t admitted to myself that this could be a possibility.

  Partly, I’d been blocking out the potential for more bad brain-related news. And mostly, leading up to this appointment, I’d been focused pretty tightly on the email exchange with my mother, putting my house on the market and evacuating it for repeated showings. I was busy with work too, finishing another assignment for a nonprofit.

  When I thought about coming to California, I’d thought of it almost as vacation, with
the added bonus of getting another medical opinion from another angle. I’d assumed that this new opinion would correspond completely with my own thoughts. I don’t think I said this out loud, or even silently to myself, but I figured at the Amen Clinic, someone with fancy diplomas would tell me that yes, I was right, and Silver was wrong. I assumed the doctor would say there was no way I had MS.

  As Darmal talked about the imperfections he saw in the Claymation model, I began to wonder whether this whole trip was a bad idea. I didn’t say anything. That horse had left the barn. I couldn’t get up and walk out—what would be the point? Darmal moved on to the other picture of the brain—the red, white and blue drawing—and pointed to two white spots on the top of my brain.

  “These two often come together,” he said. “They are like cousins, anxiety and depression.”

  Darmal waited a moment for that to register. “You’ve probably been dealing with these for a long time,” he said. “Maybe you didn’t even know you were dealing with them.”

  “Well,” I started, thinking of the recent anxiety- and sadness-inducing conversation with my mother. There had been others, too many to count. “That may be,” I said. “I remember when I realized that not everyone needed to spend time lying on their bed staring at the ceiling. I thought that was normal.”

  He almost smiled. I looked at Jonathan. He looked calm.

  “And,” Darmal said, “your cerebellum is a little lazy. I’d like to see more activity there.”

  Great, and now I have a lazy cerebellum too?

  Darmal didn’t seem so disheartened. In fact, he felt like the pictures showed a pretty healthy brain and that with proper exercise and nutrition, my brain could function even better. The good doctor moved straight to solution.