Misdiagnosed

by Jody Berger

  I listened to her voice mail, took a seat at my desk and made the call. How bad could it be?

  “Hi, Mom,” I said and started catching her up on my life. No mention of Pender, no stories of Bruce, although I did tell her about New York. I said it was great to see Dawn and meet her son and that my dad and I did well.

  “You know, it’s tough sometimes,” I said, “to see him not taking care of himself. He’s a diabetic who doesn’t drink but orders a big sugary virgin daiquiri.”

  “You should yell at him,” she said. “That’s not fair of him to do to you, and you would feel better if you called your father and yelled at him.”

  “I don’t think so…” I said and quickly changed subjects. “How’s Mel?”

  “He’s fine. So busy. He still sees all his patients, and he’s writing papers and speaking on a panel next week.”

  Mel’s a psychoanalyst, a full-on Freudian, who married my mother when I was twenty-three and living in California. My parents had been divorced maybe six months when my mom met Mel, and they were married within a year.

  When she’d told me all there was to tell about Mel, I felt I should tell her what was really on my mind. “Hey, Mom,” I started hesitantly. “You know how I told you about that tingling I felt in my fingers last year? Well…I went to the doctor and now, well, actually, I’ve seen a bunch of doctors and there’s no real agreement on what it is. One thought vitamin deficiency, another thought heavy metal toxicity, another thought MS, and another thought it was an alignment issue—you know, the result of going over the handlebars a few too many times.”

  I tucked the nasty one in the middle because my mom gravitates to worst-case scenarios and I was hoping to slide it by.

  No luck.

  “You have MS? Who diagnosed that?”

  “Well, I don’t know that I have it. A neurologist in Denver said it but he didn’t spend much time with me, just ordered an MRI. When he got the results, he called to tell me it was MS and then really quickly wanted me to go on drugs. I don’t think he’s right, though, and I don’t like the idea of the drugs.”

  “I’m here for you. You know that, don’t you?”

  Stunned, I thought for a second and said, “Mom, I don’t know what that means.”

  After a moment of silence on her end, she continued on as if I hadn’t said what I’d just said. “Do you want to come home?”

  I hadn’t lived in Detroit since I left for college and didn’t think of it as home. “What would I do there?” I asked, knowing I wouldn’t go. Even thinking of Detroit felt heavy, like another hundred pounds on my shoulders.

  “We could get you in to see a neurologist here.”

  “No thanks, Mom. I’ve got a plan. I’m going next week to see a doctor in California and depending how that goes, I’m thinking I’ll work with him or a doctor I’ve already seen in Vancouver who wants to take a really thorough approach to figure this out. Maybe I’ll move there for three months toward the end of summer, or cousin Rona said I could stay with her in Seattle and drive to Vancouver one or two days a week.”

  My mom asked who the doctor was in Vancouver, and I told her about Guy Martin. “Maybe I’ll come stay with you at Rona’s,” she said.

  “Um, you’d have to ask Rona, I guess.”

  “I’m sure there’s room for me there.”

  She asked a few more questions about Dr. Martin, and I explained how I liked him and his noninvasive, drug-free approach to healing, and that I liked his commitment to helping patients heal rather than masking or managing symptoms.

  “Well,” she said, “it sounds like you have a plan.”

  “Yeah, Mom, I do,” I said. “And I want to ask you something, about when you were diagnosed.”

  Four years earlier, she and Mel had come to Colorado for the summer meeting of the American Psychoanalytic Association. On the fourth or fifth night they were in town, over dinner, she told me she had been diagnosed with Parkinson’s six months earlier. I asked why she hadn’t told me.

  “I wanted to wait until you could see me when I told you so you wouldn’t be scared,” she said.

  At the time, I asked for more information, and she told me she had seen the doctor who had been her doctor forever for a routine exam, and he referred her to the leading Parkinson’s expert. The expert found Parkinson’s and put her on medication.

  “Are you sure?” I’d asked. “Did you get another opinion?”

  “Oh, no, he’s the leading expert. And it’s a very slow-growing type of Parkinson’s, completely manageable by medication.” And that was the end of the story. At dinner that night, and for the rest of their stay in Denver, neither she nor Mel had anything else to add. It was fine. She was safe. That’s all I needed to know.

  Now, though, years later, with my own experiences in Healthcareland, I wanted to know more.

  Looking out the window, I held the phone in my right hand. “Mom,” I said tentatively. “What was the symptom that led to your diagnosis?”

  “Oh, I had a tingling feeling in my arm.”

  I felt the air leave my lungs. My head went blank. My mom and I talked for a few more minutes. And even as we were having the conversation, I could not have said what we were talking about. At some point, I recognized that she had said good-bye, so I did the same and hung up.

  The conversation was too strange to contemplate. Telling me to yell at my dad, deciding to come to Rona’s and then saying she’d had the same symptom but never mentioned it? And as we talked about all those things, there was an undercurrent too, something missing, words she wasn’t saying and questions I didn’t ask.

  I put the phone down thinking the conversation went better than expected. But then, the bar was pretty low.

  I called Bruce but couldn’t bring myself to mention the conversation with my mom. We talked about his travels instead until I was sleepy and said good night.

  The next morning, I went to a two-hour yoga class and came home, still enjoying that post-shavasana bliss, to a new voice mail.

  “Hi, it’s your mom,” she said. “I talked to Mel and we don’t think you should go to Vancouver. We don’t want you to waste all your money on an experimental treatment with a doctor like that. He’s a quack. You need to get a second opinion. If you come home, we have connections and can get you in to see the head of Neurology at the University of Michigan hospital. If you come here, we’ll pay for it. Otherwise we can’t help you.”

  Easy come, easy go, yoga-inspired bliss.

  I listened to the message again.

  She had seemed relatively reasonable the night before, but now, just like that, that open-minded, sympathetic version of my mom was gone and replaced with the version that gives directions without listening to the circumstances. I’d told her I’d seen half a dozen doctors to get half a dozen diagnoses. And she’s telling me to get another second opinion?

  Oh yeah, like that one she got, I thought.

  Plus, she had no idea how much money I had or what Dr. Martin’s treatments cost, and yet she knew I’d waste all my money on him. And that last bit—“if you come here, we’ll pay for it. Otherwise we can’t help”—I didn’t remember asking for help. And, given my college experience, I suspected I’d get stuck with the bill anyhow.

  I couldn’t call back right away, so I just dashed off an email saying thanks but no thanks. I wished her a happy Mother’s Day and said I wasn’t ready to continue the conversation.

  My mom did not understand.

  In the suburbs of Detroit, she and Mel were celebrating Mother’s Day with Mel’s kids, their spouses, their kids, and my sister and her kids. They were having Sunday dinner as they’d done for so many years that they had busted out a wall and remodeled the kitchen so all sixteen could sit. I’d never been to one.

  At this one, at least, my mom was thinking of me. She found time to steal away from the
crowded kitchen, upstairs to the office she shared with Mel, to send me an email:

  Thank you for the Mother’s Day wishes. I will admit that I am very disappointed that we won’t be talking today. After thinking about what you have told me, I would like to see you do some things before you go to Dr. Martin. It seems to me that you need a second opinion by the best neurologist available. We have resources to get you to a highly respected specialist in neurology to make a proper diagnosis so that proper treatment can be started. We know the former head of neurology at U of M and you could come here to see him. Also, my Parkinson doc is a neurologist and is head of the Parkinson’s and Movement Disorders Center. And we have good friends in Denver who could put you in touch with a specialist for a second opinion. I would hate to see you invest all of your savings in a questionable alternative medical treatment before exploring the best standard of medical care available.

  I love you,

  Mom

  “Thank you for your advice,” I wrote back. “I’ll consider those options.”

  My mom wasn’t done. First, she wrote to say I was just like my father and killing myself. Lovely. I didn’t respond. The next day she wrote to tell me that I would die if I didn’t listen to her. I did not respond to that either. What was there to say?

  On the third day without a response from me, she wrote again:

  One event you may not recall which you may want to know about was when you were about 4 years old. You were soiling your underwear and hiding the evidence in your closet. I did not know how to understand it and I took you to a child psychiatrist for evaluation. He spoke to me and your Dad and told us not to worry about it. Now I understand better that you were very angry and there was nobody to help you with that. I now believe that there must have been lots of times I didn’t help you with feelings you must have had and your response was and still is to run away from those feelings just as you did when you responded to me on Sunday by telling me that you were exhausted from our conversation and didn’t want to open up again. It is painful to me, also, to hear what you are going through but closing it up will not solve the problems you are having. I want to be supportive and helpful to you. I do love you.

  Mom

  Of course I remembered it. And I wasn’t four.

  The intestinal distress may have started when I was four, maybe earlier, but I remember one awful experience and I was definitely five. I had started first grade without spending one day in kindergarten. Even though my birthday was three months past the deadline for enrollment that year, my parents thought I should move ahead and start first grade anyhow. Maybe they thought it was some sort of race, that I needed to start and finish school first, before all my friends, or maybe they thought I was too smart for kindergarten. Or maybe neither wanted to spend the half day with me after kindergarten ended.

  For whatever reason, I was in first grade, and one night in the fall we were celebrating something; I can’t remember what. My sister and I were both dressed up. I know I was dressed up because my hair was straight.

  An hour or two before any event at which I had to look nice, my mom would meet me in the bathroom, wielding a hair dryer and a big, round brush. She was tall, or at least I thought so at the time, and thin. Her black hair was dark and short, blown straight to frame her small features.

  My hair, left to its own devices, was complete chaos. Brown curls, with a few red strands tossed in, reached out in all directions. Some fell in my eyes; some defied gravity; and in the dense humidity of Michigan summers, all the curls gained strength and volume and went wherever they wanted.

  I didn’t mind. My hair and me, even back then, we had reached a happy truce. I let it do what it wanted, and it did the same for me. My mom, however, didn’t love this plan. Especially when other people would see us as a family.

  On those days, she’d come to the light-blue bathroom I shared with my sister. She’d clip most of my hair on top of my head and grab a section of the curliest hair from underneath along my neck. Using the round brush, she’d pull the hair straight out from my head and spin the brush under the hair and under the heat, burning my neck occasionally. When she finished the underneath sections, she’d take a fresh wet clump down from the middle and work that. When the middle sections were dry, she’d start on the top layers. One section at a time, she’d pull the hair, spin the brush, and point the hot air, over and over, until forty-five minutes later, when my once-crazy curly hair lay down flat and pin straight, shiny all the way to ends.

  Sometimes it hurt. Always it was hot. And while I didn’t enjoy the process, I endured it. I was getting attention from my mom, and she did some version of this to her own hair every day.

  For this celebration, with my hair straight and shiny, I sat with my sister in the backseat, belted in, while my dad drove and my mom rode shotgun. My parents went to fancy restaurants, nightclubs or concerts every Saturday night while Ellen and I stayed home watching TV with the babysitter. This must have been a big night, because we were included.

  The restaurant had white linen napkins and older male waiters who acted as if they’d never seen kids before. The menu was full of foods I’d never tried and words I didn’t know.

  “Could you tell me how the lamb is prepared?” my mom asked the waiter.

  “What do you recommend, the sweetbreads or the duck?” my dad asked.

  My father ordered for all four of us, and soon a team of servers set the first wave of plates upon our table. If the Campbell’s soup and grilled cheese sandwiches we normally ate were food, then these dishes, drenched in heavy sauces and exuding rich, warm smells, were some otherworldly delicacy, created for luxury, not sustenance.

  My parents were sharing a bit of their world with us, so my sister and I dug in and tasted everything—appetizers and breads, entrées and desserts—as if we could prove we belonged by enjoying this food, as if our enjoyment was something we could give our parents. We ate until we could eat no more.

  When all four of us were completely stuffed and all the plates and silver was gone from the table, the waiters returned with tinfoil swans of leftovers that they presented to Ellen and me. We giggled and said good-bye, walked outside into the heavy air and took our seats in the family sedan.

  “Why do we buckle up?” my dad asked, mimicking some public service announcement. “We buckle up for safety.”

  Ellen and I did as told and my father guided the car onto city streets. We’d gone less than a mile when I felt a grinding in my belly. My family talked about the meal and the restaurant and the waiters, and I sat quiet and withdrawn, hoping the pain would stop. When it didn’t and I could take no more, I said, “Dad, I think we have to stop. I have to go to the bathroom.”

  Ellen sighed an exaggerated sigh like a big sister would, and my mom turned to look at me. “Couldn’t you just make it home?”

  “I don’t think so.”

  My dad pulled into the parking lot of a Howard Johnson’s, and my mom and I ran inside. We sprinted past the hostess stand to the bathroom. I barely got inside the stall, locked the metal door and pulled my pants down before an explosion came out of me. Like the food at the fancy restaurant, this awful mess came in waves.

  After the first, my mother asked, “You ready to go, honey?”

  “I don’t think so.”

  After the second wave, I heard her say, “Could you flush the toilet, Jody? It really smells.” And after the third, she said she’d wait outside.

  Keeled over in pain and confusion, I leaned forward on the toilet, my stomach resting on my cold, skinny legs, while I stared at the tile floor. I wondered when this might end and how it would end.

  Eventually, it just did. The eruptions subsided and I pulled myself together. I met my mom in the hall and we walked back to the car, and all four of us drove home in silence. No one asked how I was feeling or what had happened. It was almost as if it hadn’t happened or we had reached a sil
ent agreement: if we don’t talk about it, it didn’t happen.

  While I didn’t understand the silent strategy, I was the kid of the family, and figured they all knew more than me. And I was used to it. As a family, or even one-on-one, we didn’t talk about things that were painful or embarrassing or ugly or confusing. And diarrhea hit on all four of those.

  But the incident after the fancy restaurant wasn’t the first. Or the last.

  In first grade there were more than a few episodes of intestinal distress. My stomach hurt so often that I was a regular in the nurse’s office. On occasion, I went to see the nurse because sitting in class, I’d feel that grinding in my belly, and before I could figure out how to get out of the room and down the hall to the bathroom, I’d have what my mom called “an accident.” Afterward, I’d go to the nurse’s office overcome with shame and fear.

  One time, I went to see the nurse and started sobbing uncontrollably. My face filled with tears and snot and humiliation. The nurse, a kind woman with a round face and round glasses, handed me a box of Kleenex. I just looked at it, uncertain what to do.

  When I cried like this at home, my dad would say, “Please stop crying. I’ll give you a dollar if you stop.” I’d be crying and crying and crying and he’d beg, “Please stop. Just stop, please.”

  The nurse, however, seemed fine with my outpouring of feelings and wanted to help with the snot. She pushed the box closer to me and I took a tissue. I held it between my fingers around my nose and squeezed tight as if I were about to duck underwater. Then I blew until my cheeks turned red.

  “Oh, honey,” she said. Her face softened into an easy smile. “Sweetie, you have to leave a little room. Don’t hold so tight. Leave space so you can blow the snot into the Kleenex.”

  She showed me how. I tried again and it was a revelation. I was amazed that my parents had never shown me how helpful Kleenex could be. Maybe they didn’t know, I thought. Wow, this is something I can show them.

  But by the time I got home I had forgotten my new trick, or maybe I just knew if I brought it up I’d have to tell why I was in the nurse’s office. As we passed canned peas and roast chicken at dinner that night, my dad asked each of us, as he always did, “How was your day at school?” I said what I always said: “Fine.”