by Jody Berger
“Look,” she said, pulling out my results. “You have seventeen times the amount of mercury in your system.”
I’d done three months of chelation and could only see the downside. “It’s really hard on my body,” I said. “I take the pills for three days and day four is always sucky in different ways. One day I felt weepy and couldn’t stop crying. Another time I felt like I was getting the flu, that all-over achy feeling. And that day in New York, when I felt horrible, like I was standing on ice, that was day four after three days of Chelex.”
Dr. Duncan told me to hang in there. She told me that several of her patients had great success with chelation. She reminded me she’d done it herself to clear up brain fog.
“How long did it take?”
“Two years,” she said, “You’ve only just started on it. You have to give it a chance.”
I said I’d think about it.
At home, I wondered about things that made me feel worse before they made me feel better. Generally, the first ten minutes of a run weren’t very nice, but the next twenty or thirty were blissful. In relationships, confrontation is awful, and then it’s over and the friendship or love feels stronger. Writing—the act of writing—isn’t that great but having written can be heavenly.
In every example that popped into my mind, the pain-to-pleasure turnaround was pretty quick. I didn’t have to wait two years to enjoy a run, a friendship or the written word. I didn’t think I could stick with anything that made me feel lousy one day a week for two years.
I stopped taking the Chelex and vowed to find another solution.
CHAPTER 10
Peace and Love on Pender Island
On a Saturday morning, I caught the now-familiar flight to Vancouver. I’d been back twice for short weekends with Bruce since the long stay in January. I read the New York Times and a New Yorker, then watched out the window as the rich greens and blues rose and fell and rose some more until we rounded Mount Rainier. Third or fourth off the plane, I strode purposefully past the airport’s “Welcome to British Columbia” indigenous plant and waterfowl display to the cavernous customs hall. The lines that fold back and forth and back again on themselves were surprisingly empty, so I continued without breaking stride up to the dark-haired customs agent behind the glass at Window No. 4.
“What are you doing here in Canada?”
“Visiting a friend.”
He flipped through my passport pages. “You’re here often.”
“He’s a good friend.”
Bruce met me outside, gave me a hug and a kiss, and tossed my bag in the back of the Range Rover. He guided the car out of the international airport, around the short, squat aviation-related buildings and into the old terminal. He threw his car keys to a youngish guy who seemed happy to see him, and we walked down the dock and climbed into a four-seat floatplane. The pilot climbed in and said, “Hello, Bruce, how ya doing today?” Bruce introduced me, and we took off down the strip of water and into the air, up and over Galiano and Mayne Islands to touch down with barely a splash near Pender Island.
The pilot taxied the plane toward land and pulled up beside Bruce’s dock.
“I love this,” I said.
I said it every time we landed on Pender. I always felt like a Bond girl. And this always amazed me. I’m a skinny Jewish girl from Detroit, and I get to jet into Vancouver, where a handsome man meets me curbside and drives me around to a smaller plane, where we take off from the water. Twenty minutes later, we touch down and walk into that handsome man’s house.
Heaven—or at least one version of it.
Ben, Bruce’s seven-year-old yellow Labrador, woke from his slumber on the lawn and trotted over to meet us.
“You’re looking good, big dog,” I said, leaning to scratch him behind the ears. “You look like you’ve lost some weight.”
Carrying my bag and his, Bruce caught up with us and said, “You’re not the only one on a healing path. We’re all getting in shape, right, Benny?”
We left the luggage on the back porch and walked around the house to the front gate. Ben trotted up ahead wagging his tail, knowing that he had a great life. He lived on the most beautiful point of the most beautiful island in the Pacific Northwest. From the front lawn, he could see Mount Rainier, and all the way around the house, he could wander among the flowers and statues of Buddha. Bruce would come and go, and Ben got to stay.
The light was beautiful and the day was warm, so without any discussion, we walked down the road past the one restaurant and onto the familiar dirt road. When we were close to the trailhead, Bruce asked, “How are you feeling these days?”
“OK,” I said. “The diagnosis still scares me. I don’t think he’s right, but I dunno, my feet still feel a little weird.”
“What does that mean, weird?”
“They’re kinda cold a lot of the time and I feel like I can’t really get a good foot plant, like they don’t sink into the ground right. And sometimes, I feel like I’m wearing flip-flops when I’m not.”
We turned onto the trail and started climbing, going over roots and rocks and between trees. We were moving fairly quickly, and I had no trouble navigating the terrain. “It’s strange though,” I said. “My gait hasn’t changed, and my range of motion hasn’t been limited at all. I still move the same way, which seems like I wouldn’t if I had MS.”
“Looks like you’re moving well.”
When we reached the top of the trail, we sat down on the rocks nearest the cliff a couple of hundred feet above the water. We gave Ben some water and drained the rest of our bottles ourselves. We looked out to Mayne and Saturna Islands, past them to the Strait of Georgia and over the water toward the United States.
Though sweaty from our efforts, we started feeling a chill sitting on the rocks, so we turned around, walked back to the house, opened a bottle of wine and made dinner. We built a fire and made love on the living room floor, then moved upstairs, built a fire and made love there too.
The next morning, we walked out the front gate, took the same left turn and stopped at the one restaurant for breakfast. We talked about crazy people we knew and watched a couple sitting outside. “She’s really having trouble sitting still,” Bruce said, as the woman moved from one chair to another and then to a third.
From breakfast, we walked the same route to the same trailhead. We reached the top, took in the same view but didn’t stop to sit; we just took a look and kept moving. On the way down, we stepped over the same roots, worked between the same trees and ducked under branches, each in our own thoughts. At the bottom, where the trail spilled onto the dirt road, we walked into full sunlight. “Bruce,” I asked, “where does love fit into your life?”
I loved our weekends together and wondered why they were only weekends. And not even every weekend or most weekends. Just here and there, maybe once a month. Essentially, I was asking how I fit into his life. I’d asked some variation of the same question a few times before and never heard an answer I understood. I knew he loved me. He lit up when he saw me. When he introduced me to his friends, they’d say things like, “You’re getting great reviews,” or “Oh, he’s crazy about you.”
Bruce was silent for a bit, so I asked again, and maybe I asked again too soon.
“What?” he said.
“You know, in the scheme of things,” I started slowly, carefully. “Among all the things you do and all the things that are important to you, where does love fit?”
“Why are you asking me that?” For a second, he looked young and confused. But the innocence faded and his face morphed into anger. His voice, when he continued, sounded like I had taken a baseball bat to the hood of his car. “That’s not a fair question. Why would you ask me that?”
Now I was confused. There was no wrong answer. I wasn’t asking to judge, just to understand. I simply didn’t want to hurt or be hurt, and I wanted to unde
rstand where “we” fit in the scheme of his life, if at all. We walked along in silence until we were about quarter mile from the house and saw Jonathan and Julie walking toward us.
They were old friends of Bruce’s, and he had invited them to join us for part of the weekend. They had taken the morning ferry from Victoria and had been sitting at Bruce’s house for an hour or two, wondering where we were. Eventually, they decided to go for a walk to look for us.
“You look great,” Jonathan said, giving me a big hug. I hadn’t seen him since my meeting with Silver. I had called him though, often in the beginning. Jonathan was a helpful voice on the phone that first day. He instructed me to breathe when I couldn’t and said, “One billion cells are wondering who’s in charge.”
I was happy to see him, though admittedly would have been happier to spend the weekend alone with Bruce.
The four of us walked back to the house, Jonathan and I talking and walking up ahead, and Bruce and Julie together behind us.
Later in the afternoon, we settled onto the big comfy couches in the living room, and Julie asked what was happening with my health.
“It’s confusing,” I said. “I feel the same except for my feet. I move the same. I wouldn’t think anything was wrong except now, because of that stupid diagnosis, every little thing that I feel seems like some big scary thing. MS is a series of what they call ‘disease episodes,’ or flare-ups, with remissions in between. Sometimes when I get really scared, I wonder if I’m just in between episodes, if something is coming.”
“That is scary,” Jonathan said, “the not knowing.”
“Yeah,” I said. “Mostly I think nothing else is coming and I don’t have MS. And even saying the name, MS, sounds so disproportionate to whatever’s going on in my body. But the diagnosis is still on my health insurance record because all the other doctors didn’t take insurance. I really want it off my record. It feels like a felony conviction that I can’t appeal and never got to argue against.”
“Can you see another doctor in Denver?” Julie asked.
“I don’t think I can see anyone else within my HMO. I mean, I could, but I don’t feel confident that anyone would have more time or would want to disagree with Silver. He’s the department head, I think.”
“What about Dr. Amen?” Bruce asked.
Based in Southern California, Daniel Amen works with SPECT scans, or single-photon emission computerized tomography. Instead of a flat, static image like an X-ray or MRI, a SPECT scan provides a 3-D picture that lets a doctor analyze how an internal organ works. It shows where there is activity or inactivity within the brain. Bruce had seen Amen before, to talk about attention-deficit disorder and see if Amen could suggest ways to help him focus. Bruce found the testing and the counseling that came out of it so helpful that he sent family members and some of his colleagues to California for the same testing.
“I’d love to go,” I said. “I don’t think I can afford it.”
“That’s not a good excuse. I’ll take care of it,” Bruce said. He could be prickly when asked to talk about love and affection, but ultimately, I realized, he had no trouble demonstrating either. His actions always felt loving to me. He liked to take care of friends and family, and I was always grateful to be in that circle.
“Thank you. That’s really sweet,” I said, and still felt hesitant. “I guess I don’t want to go alone.”
“It’s a three-day exam. I can’t take the time off,” Bruce said and looked at Jonathan: “You want to go?”
Jonathan was happy to go and figured, what the hell, he’d get a 3-D picture of his brain too. We picked dates and set about making plans. Again, I was thankful for the people in my life. I was grateful that Bruce wanted to help financially and that Jonathan had the time and wanted to be there with me.
The next morning a floatplane came to take Bruce back to Vancouver, where he’d spend a night and then head to London for work.
I rode the ferry to Victoria with Jonathan and Julie and caught a flight from there.
Back in Denver a few days later, I checked out Dr. Amen’s website, www.amenclinics.com. It explained the process of getting a SPECT scan, the reasons to do it and the risks involved. He also gave a little background on the brain:
The brain is the most complicated organ in the universe. There is nothing as complex as the human brain. Nothing. It is estimated that we have 100 billion neurons or nerve cells and trillions of supportive brain cells called glial cells. Each neuron is connected to other neurons by up to 40,000 individual connections between cells. You have more connections in your brain than there are stars in the universe. Also, even though your brain is only about two percent of your body’s weight, it uses twenty five to thirty percent of the calories you consume. Your brain is the major energy consumer in the body.
This insight into the brain, its volume and complexity, was exquisitely comforting to me. My brain was more interconnected and complicated than the universe—clearly no match for a fifteen-minute exam and an MRI given by a cocktail waitress in scrubs. And if there are that many connections, I wasn’t sure it mattered if a few were tangled up in lesions. There are billions more ready to stand in. Redundancy can be a good thing.
And even as I was thinking of all the reasons Silver had to be wrong, I couldn’t believe I was still having an argument with the guy. He was like a ghost I invited into my machine. I hadn’t talked to him in months, and I knew I didn’t trust him. At the same time, I was insanely shadowboxing with him and was helpless to stop.
I continued reading. Amen listed his principles and explained his philosophy:
When you change your brain, you change your life. By enhancing your brain function with the right treatments for your brain type, you will enhance every aspect of your life, your work or schoolwork, your relationships, your energy level, your emotional well-being, your physical health, and even your appearance.
Amen also wrote that he didn’t believe in a one-size-fits-all approach to health and that his team takes a comprehensive strategy to treat each person as a unique individual.
“We believe in skills, not just pills,” the website said. “Yes, medication is sometimes a necessary piece of a complete treatment plan but whenever possible, we use natural treatments, including natural supplements, nutrition, physical exercise, targeted thinking exercises, and more. We aim to give our patients all the tools they need to boost their brain for a better life and a better body.”
Music to my ears. Medication as a last resort? Keep talking. And giving patients the tools they need? Absolutely. The whole thing was so exciting and so promising that it was as if I had never gotten equally excited about Dr. Duncan and chelation, which I had stopped after feeling so shaky in New York.
Dr. Amen’s specialty was not multiple sclerosis or anything similar. And to me, that was a good thing. I was starting to believe that we all see only what we are looking for.
So, no more MS specialists who are searching for MS only. I wanted someone who could keep an open mind and evaluate my symptoms from a different perspective.
Dr. Amen was a physician and a brain specialist, not a neurologist. Most of the conditions mentioned on the website fell under the broad category of mental health: attention-deficit/hyperactivity disorder, anxiety, depression, substance abuse and others. Amen believed that examining the brain could be helpful in treating those issues. And after doing tens of thousands of SPECT scans, he saw correlations between tendencies and regions of the brain that were either over- or underactive.
Amen also used SPECT scans to diagnose trauma and to design treatment plans using the full range of tools, like Guy Martin did at his holistic practice in Vancouver: supplements, nutrition, physical and mental exercises, and medication, when necessary.
If something was attacking my central nervous system and there were lesions to show for it, then that counted as trauma. Trauma or no trauma, if there were
lesions on my central nervous system—my brain and cervical spine—then a SPECT scan should show whether they mattered. And if the scan showed they mattered and my brain wasn’t working right, I liked that Amen prescribed natural treatment plans to boost brain function. He didn’t say it quite as succinctly or cowboy-like as Dr. Brown—“I’m so radical, I think everything can heal”—but he seemed to be on the same page.
I read his book Change Your Brain, Change Your Life and thought, All right, let’s do it. If something is wrong, let’s change it.
CHAPTER 11
I Wasn’t Four
“Hi, it’s your mom.”
Even without caller ID on my voice mail, I’d know her voice, presumably the first I ever heard.
I hadn’t had a real conversation with her since the diagnosis. I had mostly been avoiding her calls or taking them and talking about whatever was easy. She’d fill me in on what her husband was working on, what papers he was writing and how all his grandkids were doing. I’d tell her about the weather in Colorado.
I tried not to talk to her when I was scared. Or when I had to make big decisions. I learned this lesson when I was seventeen and not ready to go to college. I confided in my mom that I wanted to take a year off before jumping in. “You can’t do that,” she’d said. “We won’t pay for it if you don’t go now.”
Dutifully, I went to college—and wound up paying my way through anyway. (I still have no idea who she meant by we.) In a hurry to get far away from home, I passed on the affordable state school, University of Michigan, and enrolled at Duke University. I knew the tuition was more than Michigan’s, but we didn’t talk about dollars in my house, and I didn’t grasp the size or the significance of the difference. I followed directions, went to college, worked forty hours a week while I was there and graduated with bone-crushing debt.
Twenty years later, the debt was gone but the memory remained.