by Jody Berger
And then, in much kinder language, she basically said my diet stunk. I thought it was überhealthy. I followed the food rules set out by Michael Pollan: real food, mostly plants and not too much of any one thing in particular—at least I thought. What could be better than that?
Meat and chicken would be. Both are good sources of vitamin B12, and I rarely ate either. When Dr. Desai went through my diet, she pointed out that I rarely ate any protein at all—not a good strategy for healing.
She sent me home with a few herbal formulas to get my gut back in order. She also gave very clear—even illustrated—directions to eat balanced meals. She drew a circle broken into four quadrants, with letters in each—P, C, F, V. “At every meal, you must eat protein, carbs (100 percent whole grain or a starchy vegetable), fat and a cooked vegetable.”
The cooking part, she said, was critical. I didn’t have the intestinal fortitude to break down raw plants.
Cool, I thought. I cooked in restaurants. I’m happy to cook all my food, forgo raw carrots if that means no more weirdness in my feet, no more fear of MS and no more thoughts of Dr. Silver and his proposed plan of weekly injections.
I thanked Dr. Desai and practically floated out of her office. Six inches of snow had fallen while I was inside. It was the light, airy, fluffy kind, so I happily brushed it off my car and climbed in.
I drove a few minutes and merged onto the freeway, where loads of cars stood motionless pointing toward Denver. I called Lisa, who turned me on to the Department of Transportation website. I thought she might be at her desk so I asked her to take a look for me.
“Sure,” she said, and laughed out loud. “I’m sorry, I’ve just never seen anything like this. It says the speed on US 36 is zero. You may never get home.”
“Oh, well,” I said, “I don’t care. I don’t have MS. I just have to cook my vegetables. And eat more protein.”
“That’s great, Jo,” Lisa said. She didn’t really need to hear it from Dr. Desai. She already believed it was a misdiagnosis. She had believed it was BS since I told her about the first four doctors who said it wasn’t MS.
I was the only one who had kept a constant, if low-level, fear going.
As I sat in traffic, then rolled ten feet forward and stopped again, I wondered why. Was low-level fear the inevitable by-product of a full-blown panic, just a lingering effect of that initial shock? Would it go away in time? Or was something still unresolved?
As the snow fell and I inched my way home, rolling forward and stopping, rolling and stopping, I was so happy and excited that I couldn’t stay right where I was. I decided I needed one last thing to cap this whole year of diagnosis-induced insanity. I decided to call Dr. Deborah Lee, a respected and well-known neurologist whom Dr. Duncan (the heavy metal expert) had suggested I call. I didn’t want another opinion. Dr. Lee billed herself as a “holistic neurologist,” so I thought her opinion would be the same as Drs. Martin, Darmal, and Desai: not MS. And while I trusted each of them, none was an apples-to-apples comparison with Silver. And none had given me something official and formal that I could submit to my insurance company to refute Silver’s comments. As long as Silver’s opinion sat heavy on my medical records, I could never get another insurance plan, not at a rate I could afford. At the time, a preexisting condition was enough to deny a person insurance or charge her exorbitant rates, and in the insurance gatekeeper’s minds, I had a dreaded preexisting condition.
As I slowly rolled home, I relaxed because not only could I clear this mess from my record, I could clear it from my mind. Dr. Desai looked at all the evidence and linked it in a way that made sense of all the twists and turns: the stomachache that preceded the tingling, the tingling itself and the way it left my hands and later came back in my toes.
CHAPTER 17
Packing Ice in Your Pockets
I called Dr. Lee and made an appointment for February 1—three days before I was set to fly to Kenya to travel with a friend and go on safari with Bruce.
He’d been traveling back and forth to Kenya for ten or twelve months, working to put together a complicated business deal that somehow involved a gold mine, German geologists and the Turkana people of northern Kenya. About once a month, maybe more, he’d fly to Nairobi, board a smaller plane and continue to a spot near the Ugandan border, where he would then camp in the bush, scope out the potential mining operation and negotiate with tribesmen, Kenyan officials and the Germans. For a businessman who had worked on mining projects all over the globe for years, I could tell he was exceptionally happy about this one, almost gleeful. The deal was going to be so big that Bruce had his entire team on it, and to my surprise, he even found a spot for me. “I’ll tell you what,” he had said one day in the fall. “We’re going to need someone to publicize this. I’d like to hire you to do corporate communications, and as a member of our team, your airfare and expenses will be covered.”
I had needed precisely zero seconds to squeal, “Yes! Absolutely, I’d love to. Oh my God, this so great. I can’t wait. Thank you, thank you!”
“You’re welcome,” he said. “It’s going to be great. I’m really glad you’ll be a part of it.”
And a few seconds later, I squealed again, “Oh my God, this is going to be amazing. I’ll go with you to Africa and we’ll see lions and tigers and elephants.”
“I don’t think you’ll see tigers,” Bruce said. “They don’t have ’em in Kenya. Lions for sure, and giraffes, elephants too, but no tigers. I’m sorry, honey, is that a deal breaker for you?”
“No, definitely not.” And we both laughed.
We had already finalized the dates when we were together over Christmas, long before I’d seen Dr. Desai. And then, with amazing serendipity, when I was back in Denver in January and still squealing about my impending African adventure, a woman I knew from the yoga studio said she too was going to Kenya in February. She had traveled there after college and was going back to visit members of the Samburu tribe she’d befriended then.
“The Samburu live right near the Turkana. Why don’t you come with me?” she’d asked. And again, I took precisely zero seconds to say, “Absolutely, I’d love to.” I figured, what were the chances that two people I knew from entirely different places, who were completely unconnected to one another, were both going to the same remote region of northwest Kenya at the exact same time? And both invited me to travel with them? I had to say yes.
Then, in early January, when I called Dr. Lee, it didn’t occur to me that seeing a neurologist—holistic or otherwise—three days before an international flight was something I’d tried before.
In the weeks leading up to the two events, I started feeling anxious about the trip. I started calling Bruce almost daily to ask about it, and although I didn’t know it, I wasn’t the only one. When he wasn’t on the phone with me, the geologists and the Kenyans he was negotiating with were calling to pepper him with questions, problems and demands, until one day, the entire deal blew apart. No gold, no life-changing project and no payoff for the year of his life and the dollars already invested.
I tried to console him, but he didn’t want to talk too much about the deal, so I asked if he still wanted to make a vacation out of it and go on safari with me.
“Uh, yeah, I think I can make that work. Just take a phone with you when you’re with your friend so I can reach you if I can’t make it.”
The real appeal of Africa was spending time with Bruce. The first few weeks, with a woman I barely knew and a nomadic, goat-herding tribe—that sounded like an exciting adventure and only the lead-in to working with and vacationing with Bruce. And now he was saying he may call during the first part of the trip to cancel the second and better part of it. Shoot. And I’d be in some undisclosed location surrounded by goats. Cell service seemed unlikely. Disaster seemed probable.
And swiftly, without the safety and security I felt about traveling with Bruce, I started
feeling less safe and secure about other events happening in the same time frame. It was as if one plan falling apart proved that another, unrelated plan could unravel too. I started worrying about seeing another neurologist and what she might say.
The morning of my appointment with Dr. Lee, I woke up wishing for a blizzard to close all the roads. When I got out of bed and took Riley for a walk, there was no snow in sight. I drove into the suburbs and took a seat in the waiting room.
When Dr. Lee stuck her head in to say she’d be with me in a minute, I immediately thought, That’s what the tooth fairy would look like, if there were a tooth fairy. She was tiny—maybe five feet tall and a hundred pounds. She wore a flowy purple skirt with flowers on it, a small cardigan and kitten-heeled black suede boots. Her towhead blond hair was shoulder length and nearly translucent around her small pale white face.
I checked the books on her bookshelf, flipping through some until Dr. Lee returned. She introduced herself and said she was a neurologist who had gone back to school to study biochemistry. She said this was very difficult, starting all over again in school, after she was already a neurologist, but she felt it was important to understand the impact of nutrition on neurology.
Dr. Lee started flipping through the mess of paperwork that I had filled out and mailed in earlier. I handed her the CD with the MRIs on it—the same one I had shared with Dr. Martin in Vancouver and Dr. Darmal in California.
“Thanks,” she said, putting the CD on her desk and flipping to the health privacy pages. “Where do you want me to send my report and the results of this exam?”
“It’s on the form, isn’t it?” I asked. “Just send everything to me.”
“You don’t want me to send it to your insurance? Or to Dr. Duncan?”
Dr. Duncan originally gave me Dr. Lee’s name, but I hadn’t seen Dr. Duncan since I stopped doing the chelation. “That depends,” I said. “If you’re going to say I don’t have MS, send it far and wide. If you’re going to say I do, then send it to me and only to me.”
“It was Dr. Duncan who referred you, right? Do you want me to send it to her?”
“No, just send it to me, like I wrote on the form.”
And from there, she went through the rest of the pile page by page asking me what I ate, how I slept, if I’d ever been in a car accident or fallen on my head. Her interview was a combination of Dr. Martin, Dr. Desai and therapy. She asked about the house where I grew up, about my mom, dad and sister. She asked if we all got along and if my parents were still together.
Dr. Lee asked about the trip to Ecuador—the same one Martin asked about where I grew loopy at altitude. She asked what else happened after the trip, so I told her not much, other than when I got back to New York, I couldn’t eat. “I mean I could eat,” I said, “but if I did, I had to run for the bathroom.”
“Diarrhea?” she asked.
“Yeah,” I said. “I lost a dozen pounds and when I called my doctor at the time, she wrote a prescription for Cipro. Gave it to me over the phone. I didn’t even see her. But the Cipro seemed to kill whatever it was.”
“How long did you take it?”
“Three days, I think.”
Dr. Lee frowned and looked back at the pages.
“Does Cipro mean something?” I asked. She explained that it kills everything in a gut—not just the bad bugs but all the good ones too. It’s like napalm. If a person takes Cipro without taking probiotics, it leaves the intestinal tract in rough shape—no good bacteria to digest food or to fight off incoming bad bacteria.
Dr. Lee asked more questions about my life, my family and my health. She asked about every other doctor I had seen, what they said and what I thought about them. The interview portion of this appointment went on for a while—ninety minutes or more—and I felt like I was auditioning for a part or sitting in a job interview. Or presenting my case in court.
Even though I felt great physically and had no complaints, I felt like the burden of proof was on me. I felt like I had a felony on my record that needed to be expunged, that I had no power in the process, and that the tooth fairy was judge and jury. At least Dr. Lee seemed a kinder judge and jury than Silver. I was grateful for that. And I was relaxing, starting to trust her, and to trust that this would work out as planned—that she would give me proof that Silver was wrong that I could submit to my insurance. And then, after this long year, I could say good-bye to the HMO’s doctors who’d let me down, apply for new insurance and with no preexisting condition, join some other plan and be done with the whole scary affair. Graduation day. That was the plan.
“You know,” she said, putting all the paperwork back together in a pile. “I think your intestinal tract has always been your weak link. When you were a kid, you might not have realized how much stress was in your house, but your GI tract did.”
“Yeah,” I said, “Dr. Desai thought it was an intestinal thing too.”
I didn’t mention that Dr. Desai said I was close to optimal health. I just thought it. And became more confident that the tooth fairy would confirm it.
“So you don’t think it’s MS?”
“C’mon, I’ll show you into the exam room.”
She showed me across the hall to a tiny room, with the same cold white paper covering the exam table. She handed me a paper dress and a blanket. “In case you get cold,” she said. “I’ll be right back.”
I took off my clothes and put them on the chair. I put my arms through the paper gown so it was open in back, wrapped the blanket around me and took a seat on the table, swinging my feet over the edge. And then I waited. And waited some more. There was no bookshelf in the exam room, so I looked at the ceiling, then looked at the floor and wondered which of the drunk-driving tests she would ask me to do and why I had to be nearly naked when I did them. Drunks weren’t naked when they took the tests, not usually anyway. And if she was going to look in my ears and eyes, she’d see the same thing if I were wearing pants.
After what seemed an unreasonably long time, Dr. Lee knocked and entered the room. She took out a small metallic case that held a pointed flashlight to look in my ears. She looked in one, then walked around and moved my hair to look in the other. Even though she was right next to me, touching me, looking in my ear, she was somehow distant and different.
She looked the same—small, blond with a purple skirt—and yet I felt like I’d never met her before. The woman who asked questions and listened patiently to my answers was now cold and hard, like the small metal case she placed beside me. The tooth fairy was gone, replaced by something more robotic.
“OK, now I’ll listen to your lungs,” she said.
The energy in the room had changed. The energy between us had changed. So much that I had to comment.
“We were having such a nice open-ended conversation and now it’s like you’re a doctor again, a doctor on a mission,” I said.
Dr. Lee didn’t say anything and put the cold metal on my back and then on my chest. Then she pulled out a little white card with the familiar letters: L E F O D P T C.
As I went to read them, I realized my shoulders were floating up near my ears. I was growing tense and breathing short, shallow breaths. “It’s only an eye exam,” I said out loud. “There are no wrong answers.”
I was audibly talking myself down from the ledge, and Dr. Lee said nothing. She waited for me to read, checked my peripheral vision and had me follow her pen with my eyes as she moved it right to left.
“Good,” she said and took out the rubber triangle hammer and knocked just below my left knee.
“You’re reflexes are brisk,” she said.
My reflexes have always been called brisk. When I was a kid, the doctor always commented on my reflexes. Every time, he’d say, “Oooh, better stand back on these.” I figured he said it to all his patients.
Dr. Lee put the hammer back in its slot and took a cold tun
ing fork out of the case. She struck it and held it to my big toe. “Tell me when it stops vibrating.”
After a moment when the thing settled down, I said, “Now.” She struck the thing again and placed the cold metal on one cold toe and then another and another. “Now,” “now,” and “now,” I said.
Dr. Lee put her tools away and closed the case. “Stand up for me.”
I did.
“Let’s have you walk heel to toe, forward.”
“Dr. Silver had me do that backward,” I said.
“I’ve never asked anyone to do that backward,” she laughed, almost sneering at how silly his test was. “That’s like asking someone to fall over.” That made me relax a little bit. And after I finished going forward, she said, “OK, stand up on your toes. Balance on the balls of your feet.”
I did that too. No problem.
“Now, just balance on your right foot, up on your toes.”
“Up like this?” I asked as I lifted my left foot and stayed on the ball of my right until she said, “OK, and now the left foot.”
I put my left foot down, lifted my right foot behind me and raised up onto the ball of my left foot. And soon I got wobbly.
Dr. Lee frowned. And looked down.
“OK,” she said. “Get dressed and I’ll meet you back in the office.”
I put on my clothes and pulled my snugly Ugg boots onto my now-freezing-cold toes and went back across the hall to her office.
Dr. Lee was sitting behind her desk, facing the table against the wall with her back to me. Before I even sat down, she turned in her chair to face me and handed me a box of Kleenex. “Here, have a seat,” she said, motioning to the chair beside her, where we could both see the screen of her laptop.