by Jody Berger
Unfortunately, the problem affects all of us. As a group, Americans spend nearly $2.8 trillion on health care each year. By some estimates, preventable medical error is the sixth-leading cause of death in the United States. The enormity of the problem made me shudder. What is the cost of unnecessary treatment, overtreatment and error because we (or our doctors) are racing to find a quick fix?
• • •
“What have you done to yourself?”
Jillian, the craniosacral osteopath, stood behind me as I looked out the windows in her office. She hadn’t touched my back yet and was only eyeballing me.
“You’re tight and twisted in your lower back. There’s tension in your neck and between your shoulders. What did you do?”
“Um, nothing,” I said. “Nothing I can think of.”
I lay down on the table, and Jillian slid her hands under my shoulders. She asked me what I’d been up to, and I said I’d started writing about my adventures, or misadventures, in Healthcareland. “I’m a writer,” I said, “and writing is how I’ve always made sense of the world. And the whole world of medicine, diagnoses and doctors was so bewildering, it was like a foreign planet, orbiting some other sun.”
Jillian listened as she pressed on points between ribs and along my spine, gently and efficiently unleashing the tension she found.
“I feel like I crash-landed on this crazy planet and needed to write to find my way home.”
“That’s good for you,” Jillian said, continuing to find and relieve spots that I hadn’t even realized were tender.
Writing now made sense. I had been reporting—almost unknowingly—for a year since the debacle with Dr. Silver. I had started asking questions because it’s what I do and because I was scared. Instinctually, I’d started gathering bits of information like so many bricks that I could use to build a barricade between me and his gloomy diagnosis. As I went from doctor to doctor and flew to Canada, California and back to Denver, I had collected information and ideas about interconnections of body, mind and spirit. Or more accurately, I had learned how my body, mind and spirit were connected. More than connected, they were in fact the same thing. All one. And I finally started writing as a way of making sense of this understanding and sharing what I had learned.
“As part of my research, I went to the Rocky Mountain MS Society last week,” I told Jillian. “It was awful. The receptionist sat behind bulletproof glass—like they thought they were going to be attacked and needed to keep scary people out, or maybe sick people in—and the social worker told me she’d never heard of anyone being de-diagnosed, though I’ve found serious evidence to the contrary. And she showed me drawings of brains and said mine would shrink to the size of a—”
“Jody,” Jillian cut me off. “What were you thinking? You cannot do things like that. When I asked what did you do to yourself, this is the answer. Going there is what you did to yourself.”
She was right and I knew it. I just didn’t want to believe that I could fold that easily, that I wasn’t invincible, that I was no longer someone who could march unafraid and unaffected into hostile territories like locker rooms filled with NFL giants and small offices manned by medical professionals. Maybe I never could march in and get out unscathed and I just didn’t know it.
Jillian’s voice moved like her hands—direct, to the point and designed to interrupt bad habits. I looked up to her face and saw she was smiling and shaking her head, the way someone would when training a puppy. The puppy’s sweet and lovable and even cute while eating jelly beans, and yet the whole scenario won’t lead to anything good.
“It seemed like a good idea at the time,” I started and then stopped. I knew she was right and I knew at the time that I shouldn’t have gone.
She spent the next forty minutes unleashing the stress that enveloped my spine.
A few weeks later, I saw Dr. Desai, and no surprise, she concurred with Jillian: I should avoid people and places committed to believing in my demise. I knew it too—it’s a little like avoiding foods that make me feel sick.
It seemed obvious, and yet there was a time—not too long ago—when it wasn’t. I’d spent decades listening to others tell me how to take care of myself. I’d simultaneously mistrusted experts and followed their directions anyway, seriously suffering when they were wrong. As the debate over health care and our health as a nation continues to rage, the pressure to do as we’re told, especially in matters of health, continues to increase, and all the machinery—the white coats and diplomas, the absurdly short doctors’ appointments, and the implied urgency of drug studies that say, “Take this now or else”—works to ensure that we as patients acquiesce without considering the implications or alternatives that could be healthier for us.
I’d learned to take care of myself because I had my team, my two doctors—an osteopath and an Ayurvedic physician—who were trained to help me work with and listen to my body. I decided to help others find their own best care and to ensure that they and their needs are being supported—and I started by sharing my story here.
CHAPTER 21
The Bay of Bengal
In October, I dialed Mitra in Santa Cruz, California, and told her I wanted to join her in India the next time she went. I was ready. I was no longer afraid for my health and still wanted to experience the trip I missed.
I’d been off gluten for nine months and had completed the Ayurvedic herbal remedies that Dr. Desai prescribed. My gut had finally healed from a lifetime of giving it what it didn’t want and couldn’t use. As a result, my intestinal tract was working and nutrients could make their way from my food, through my gut, into my bloodstream and to every cell in my body, giving them the tools they needed to repair. The tingling was long gone, same for the tightness in my feet. As an added bonus, sensations I never thought of as symptoms disappeared too. Teeny little bumps I’d always had on the back of my arms went away, and during the day my energy level stayed consistently high from the time I awoke to the time I went to bed. I no longer soared and crashed a couple times a day.
And Jillian played a part too. After my first few sessions with her, I fell into a rhythm of seeing her for craniosacral therapy every two weeks for several months and then once a month. And each time, as I lay on that table with her hands under my back, I could feel her encouraging and teaching my body to give up the tension I’d been carrying as long as I could remember. She taught me to physically give up old habits that outlived the problem they were created to solve. I don’t know that I’ll ever understand the details of how craniosacral osteopathy works, but in many ways it doesn’t matter. I don’t need to know intellectually because physically, it makes perfect sense.
I told Mitra about Dr. Desai and how she helped me to clean up my diet and eat foods that are nourishing for me, and how Jillian taught me to feel better and calmer in my body.
And finally, I told Mitra I wanted to practice yoga with her in India and to learn about the woman everyone called Mother. Mitra was thrilled and said, yes, we could do that.
• • •
In January, two years to the date after I started the journey, I boarded the flights I had canceled so long ago. I left Denver, flew through Frankfurt, and landed in Chennai in the middle of a hot and heavy night. I found my luggage and walked outside to learn that, even at one in the morning, people were screaming, car horns were honking and men were frantically waving signs with people’s names. I found a sign that said “JODEE, Quiet Healing,” and introduced myself.
“I am Shiva,” the man said, “I will take you to Auroville.”
We drove out of the airport and onto a two-lane road, lit only by the full moon. He told me that my name—he pronounced it with a T for the D—meant “light” in Hindi. After about an hour, he pulled off the road and parked beneath a bridge. “I’d like to get some chai,” he said. “Would you like some?”
I said no, I’d wait in the car. I rolle
d down the windows and lay down across the backseat, propping my head on my backpack to look through the opposite window at the moon. In no time, a cow stuck her nose in the same window to take a look at me. “What big eyes you have, my dear,” I said. And they were huge, dark and wet, like a baby’s.
The cow stayed a moment, pulled her head out of the window and ambled away. Shiva returned and drove the rest of the way to the Quiet Healing Center. The place was completely dark and silent. The electricity was still out from a recent storm, so the night watchman gave me a candle and showed me to my room.
In the morning, around six, I awoke and walked outside to see where I was. I followed the gravel path through the gardens and toward the sound of the ocean. I stood watching and listening to the Bay of Bengal crawl up upon the sand and scurry back. I turned and continued on the gravel path, just a few steps, and saw Mitra ahead in one of her flowing, goddesslike dresses. Her hair was pulled into a bun, and her glasses sat perched on top of her head. When I caught up to her, she hugged me wordlessly and tight.
For fourteen of the next nineteen days, I practiced yoga twice a day, two hours at a stretch, alongside men and women from Switzerland, France, Italy, Germany and India. As we held our poses—some of us with ease and grace, others with effort—we listened to Mitra explain the teachings of Sri Aurobindo and the woman who breathed life into his philosophy and built a permanent home for it in Auroville, the woman everyone called Mother.
And she was everywhere. Portraits of the Mother graced a wall in nearly every public space in Auroville. Her sweet, expressive eyes watched over every person who walked through. And her almost smile inspired in me the same feeling I felt with Jillian, Dr. Desai and Mitra. A mother’s love, unconditional and pure, is a kind of faith.
In between yoga classes and on days off, I went with Mitra and other students to explore Auroville and Pondicherry, the closest town. One afternoon, I met an elephant named Lakshmi outside a temple to Ganesha, and she blessed me with her trunk. Another day, I went to a street party for Pongol, where men and women threw bananas in the air and chanted, “Pongol, Pongol, Pongol,” as cows paraded by with balloons tied to their horns. And one of the final days, I traveled by car to Tiruvannamalai, a fabulous ancient city, where an enormous temple honors Lord Shiva and an ashram provides home to Brahmana and the remains of Ramana Maharshi. I met dozens of backpackers, tourists and travelers who were all in India to spend time with spiritual leaders. Like me, they were on a path to find peace in their bodies and souls.
Every day, and many times a day, I talked to strangers who started sentences with “My guru says…” Each time I asked the name of the guru, I heard a different answer.
India is loaded with gurus, lousy with them. So is the United States. We just call them doctors.
We turn to them for direction and we listen for their divine wisdom, even when it contradicts our own. We may feel fine but still take a daily aspirin because a doctor says everyone over a certain age should. Or we may submit to invasive tests without asking the reason because we doubt our ability to understand the doctor’s sophisticated thinking. We don’t even ask; we just accept.
One afternoon in Pondicherry, I dropped into a comfy chair in a coffee house. Within minutes, an Englishman dropped into the chair beside me and dropped into conversation as if we were continuing one we started long ago, as if we’d known each other forever or that we would.
He was older than me, by ten or fifteen years, and the design on his T-shirt was faded and the cotton so soft I could see how it felt. He’d studied in Boulder and painted in London and spoke to me as if I were the only person in the café or maybe the only person in India. His kindness was that focused, that uncluttered, and his attention complete.
He asked how many times I’d been to India and I told him this was my first. He’d been too many times to count, traveling back and forth again and again over the previous twenty years.
“What keeps you coming back?” I asked.
“In the beginning, it was different gurus.”
“There are a lot of them,” I said.
“Yeah,” he laughed. “And you know, it doesn’t really matter who the guru is or what their teaching is. It’s just about sitting in the presence of love. These gurus give unconditional love and that’s where the magic is.”
Later that afternoon, I relayed the conversation to Mitra and talked to her about all the gurus, all the different ideas and what held them all together.
“Yes,” she said. “Do you know what guru means? It means ‘Gee, you are you.’”
“Gee, you are you,” I repeated. “That’s genius.”
It’s true. After looking back on my crazy yearlong search for an answer to my medical woes—and after hearing from countless others who have been through similar painful experiences of diagnoses, misdiagnoses, lack of sufficient diagnoses, you name it—I’ve come to realize that only one thing counts. In a world filled with experts ready to give advice—medical, spiritual and any other kind—it’s not the expert who matters as much as the person on the other side of the equation. Gee, you are you, and what are you going to do with the expert advice? How are you going to measure it and evaluate it against your own experience, hopes and dreams? And then, what are you going to do with it?
Each of us is our own expert, our own guru, capable of creating our own lives.
Afterword
Diagnosed or misdiagnosed—it’s sometimes hard to tell which is which, and in retrospect, I was hoping to avoid them both. At the beginning of this journey, I wanted the tingling to go away, but I didn’t want a medical expert to identify an illness or anything wrong with me. At the same time, I didn’t want that expert to miss it if something was wrong. So I stumbled forward, going from doctor to doctor to doctor, hearing varied and conflicting theories.
At some point, when I started to see the humor in my tour of the American medical landscape, I could laugh at the lengths I traveled and the list of diagnoses endured. I had been diagnosed and diagnosed and diagnosed, from the time I was a kid all the way into my forties. I was Miss Diagnosed. If there was a crown, I could have worn it. I’d earned it.
And as I came to see the humor, I also saw something else: that the line between diagnosed and misdiagnosed is not always clear. The two are not mutually exclusive and neither a diagnosis nor a misdiagnosis can be exhaustive in describing the human body. A diagnosis can correctly identify a small piece of the puzzle while missing the big picture. (It was true I had vitamin deficiencies, but why?) And a mistake can correctly carve out a broad outline without catching the relevant detail. (One doctor said I had a leaky gut but failed to identify gluten as its cause.)
Ultimately, Dr. Desai was able to see a more complete story than the other doctors, and she was able to devise a plan that worked for me. A plan that worked with me. Certainly, she was able to do this because she’s a great doctor trained in two medical traditions—Western and Ayurvedic—so she has her own system of checks and balances, of examining and reexamining from multiple angles. And she was able to devise a plan for me because, by the time I saw her, through trial and error, I knew what I wanted. I knew my goal, how I wanted to work with a doctor and how engaged I wanted to be in my own treatment.
In the United States, nearly 400,000 primary care physicians practice medicine and another 440,000 serve as specialists. All of them have expertise—no question—and they can run tests, ask questions and make diagnoses. None of them can know exactly what the patient wants, however, if the patient doesn’t know.
I hope that none of you gets sick, that you don’t have one day with some inexplicable symptom or confusing illness. That said, if you do have to go to a doctor, I hope you receive the care and results you want. And I think your chances of getting both increase dramatically if you walk into a doctor’s office prepared.
Knowing your own preferences and desired outcomes can help, so here’s a
list of questions to get you started.
Before You See a Doctor…
Ask yourself what’s going on in your body, be specific in your answers and stop to write it all down. Don’t judge the answer and don’t try to sort out the reason. Just identify what’s happening. If, for example, you are tired, ask yourself:
•Is it a drowsiness like you want to sleep?
•Or a physical exhaustion, like you need to sit down?
•Do you feel better in the morning or the afternoon or at night?
•After a meal? Or when you haven’t eaten?
•Is it exhaustion every day? Or specific days?
When you have a clear picture of what’s bothering you, ask yourself what you would like to happen. What’s the ideal outcome? Maybe the answer is obvious, like “I want to feel energized for a full sixteen hours a day.” Or maybe it’s less specific, like “I want to know when I’ll have energy and when I’ll feel tired so I can plan my days better.” Maybe it’s more fundamental: “I want to understand why I am tired so I can fix it.”
With a picture of the perfect resolution, ask yourself what you’re willing to do to get there. For example, most of us are willing to brush our teeth to avoid tooth decay. To resolve your symptoms, ask yourself whether are you willing to do the following:
•Change your diet? Your exercise routine?
•Adjust your sleep patterns?
•Take active steps to reduce stress?
•Go to physical therapy?
•Take medication? Swallow a pill daily? Inject yourself, if needed?
•Undergo surgery?
Determining Treatment
•Are you willing to ask questions until you understand what a doctor’s telling you, in order to ensure that you are getting the right diagnosis and treatment, and that your health needs are being met?