by Jody Berger
As I cruised toward Bear Creek, my mind wandered down to my feet, which still felt different than they should. They felt constricted, like something was wrapped around them with something stretched between my toes, but neither was the case. The phantom constraint and flip-flop sensations were only slightly uncomfortable, but I still wondered why I felt them.
I’d had similar curiosity over a different new sensation—the fingertip tingling—which had launched nearly a year of doctor searching. As I pedaled, I thought, I can live with my feet like this, and maybe the cause of the sensation was less important than what happened next. I was on the bike, happily pedaling forty miles further than I pedaled only months before, and so my next thought was about Dr. Darmal at the Amen Clinic. Right after I got home from California, I pedaled for twenty minutes and had to hop off to take a drink and then turn for home because I was tired. I tried again a few days later and every other day after that though, because Dr. Darmal had told me to. He looked at pictures of my brain, listened to my complaints and told me to exercise thirty minutes at a stretch for four times a week. He didn’t spend a lot of time trying to explain the reasons for the features he saw on my brain pictures or how those features created symptoms or led to my complaints. Instead of telling me a chain of events that could have led to my appointment, he used the appointment to tell me that in his experience, and Dr. Amen’s experience, certain features often appear with certain symptoms. He talked correlation and didn’t spend too much time on causation. And he said, in his experience, that he also saw correlation between certain actions—exercise, meditation and vitamins—and a lessening of symptoms.
Correlation or causation? Always an interesting question, and something I’d pondered a lot on this medical odyssey. Initially, I went to the doctor to find the cause of the tingling. Silver said he found it on the MRI: the lesions caused the tingling. But what caused the lesions remained a mystery. I didn’t get to ask Silver, but I often wondered how he knew which way the arrow pointed. How did he know the tingling hadn’t caused the lesions?
And now, as I pedaled into the sun, my body served as physical proof that my own actions could improve performance. As if I hadn’t learned that in my years as a sportswriter. I’d seen hundreds of athletes go to their coaches and work together to design a program that incorporated exercise, nutrition and motivation, to make the athlete better, faster, stronger, more balanced, more fluid or more of whatever they needed. I’d also seen plenty of athletes work with their coaches to overcome injury and illness. In the athletic world, poor health, good health and high performance sit on a continuum and the magic mix of exercise, nutrition and attitude is a constant lever to move a person along the continuum.
As I thought about all the athletes I’d interviewed and all the coaches they’d praised, I realized that that was the relationship I’d wanted when I first went to the doctor’s office. I just hadn’t thought about it before I made the appointment. If I had, I might have asked for an expert to run some tests, listen to me talk and take a general inventory so he or she could say, “Here’s where you are now, at point A, and here’s where you want to be, point B, and with my expertise and experience I will design a program to get you there.”
Instead, I told my story to the first expert, Dr. Wise, who listened, saw my symptom as someone else’s responsibility and referred me to a neurologist. Dr. Silver ran some tests, listened to my story and took a general inventory, only to say, “You’re at point A and all I can do is offer you different drugs to prevent you from sliding backward, to some scary negative point D.”
We weren’t playing offense—designing a plan of attack to move me forward—we were playing defense, considering drugs to keep me where I was. And on the defensive play, I would not be an active participant. Other than paying for and injecting the drugs, I wouldn’t have much of a role in this really important part of my life. If something I was doing had contributed to the tingling, I’d continue doing it unaware, as if my actions had no impact on my health—good or bad.
This didn’t make sense to me. Why forgo offense and settle for defensive medicine, where the goal is only to slow my decline? The only reason I could think of was a certainty that offense was impossible, that there was no potential to move toward better health. And that didn’t make sense to me either. Of course, good health can be fleeting. But can’t poor health be temporary too? Why do so many of us believe that good health is fleeting and poor health permanent?
• • •
After I got home from the ride, I went to the Tattered Cover, a great, locally owned bookstore with comfy chairs, strong coffee, two floors, and shelves and shelves and shelves of books. I didn’t know exactly what I was looking for, only that I was thinking about coaching, training, exercise and how the body adapts. Isn’t training the thing that allows the body to do something in September that it couldn’t do in June? If training can cause the muscular and cardiovascular systems to grow, adapt, change and develop, why not the nervous system too? Why would something so critical to growth and development and change not have the same healing capability as the rest of the body?
I wandered among the tables and aisles of books on the first floor. I read book jackets and checked out the author photos. I scanned the shelves and read the store recommendations taped below them. When I got to the table of new nonfiction, there it was: Mindsight, by Daniel Siegel. I’d never heard of the book or of him, but I liked the cover.
I dropped into the nearest chair and read the introduction. “Mindsight has the potential to free us from patterns of mind that are getting in the way of living our lives to the fullest,” he wrote. Siegel explained “mindsight” as a way of focusing attention on the mind to see clearly the way we think, feel and behave. “Interestingly enough, we now know from the findings of neuroscience that the mental and emotional changes we can create through the skill of mindsight are transformational at the very physical level of the brain,” he wrote.
I bought the book, brought it home and reread that section. I reread and reread the lines he wrote explaining how the act of focusing attention can serve as a “scalpel we can use to resculpt our neural pathways, stimulating the growth of areas of the brain.”
As a physician looking to improve his patients’ lives, Siegel focused on mental activities that would enhance their health. Intrigued, I also wondered whether the opposite was true, if thoughts, feelings and focus could tamp down pathways or slow growth in the brain. Anyone who’s been so sad that their stomach hurt understands that emotions can cause a physical sensation. Could emotion also leave a physical mark? Could emotional trauma cause lesions? I don’t know that the research has ever been done. I wondered whether Siegel would touch on that and kept reading.
I read about Siegel’s patients, including a teenager and an elderly gentleman who learned to practice mindfulness, and by doing so, changed their brains and changed their lives. And finally I read about a woman who decided at the age of eleven that she would not feel again. Her father was absent and her stepmother unkind. One day, after feeling hurt for what seemed like the hundredth time, the woman, as a young girl, decided that it had to stop. She couldn’t change her parents so she changed herself. She committed to not feeling the pain again.
Years later, she went to Siegel because she couldn’t feel anything at all. She hadn’t just numbed out the pain. She had numbed out everything. She was smart and successful and numb. Siegel wrote about how she couldn’t handle her feelings of loneliness as a kid so she chose to freeze them out. She couldn’t fight or flee, so she went with freeze.
Over time, freezing out her feelings—good and bad and everything in between—became habitual. I pictured her and wondered what decisions I made as a kid that had become habitual, what choices were so routine that I didn’t even notice that I was still making them. Specifically, I wondered whether my experiences growing up were now affecting the decisions I made about my health and my interactions
with doctors.
I sat down on the couch and reviewed my medical history. I pictured myself as a five-year-old wracked with stomach pain. The “treatment” for this problem eventually seemed to be shame, embarrassment and a bewildering trip to a shrink, rather than something to address my physical ailment.
I thought about earlier and later doctor visits too. Before I could walk, for example, my mom thought my feet turned in too far and rushed me to a doctor, who said, “Ooh, you got here just in time. We can fix her,” and explained how to screw my baby shoes to a metal bar.
Years later, after the stomach-churning incident, one doctor thought my exhaustion might be the sign of something permanent and fatal but then later said, “Oops, didn’t mean to scare you. It’s only mono.”
And then there was the really terrifying event, which started when I was eleven. I was in seventh grade and my mom took me to see a pair of orthodontists. They were a father and son team whose office was about ten minutes from our house. Both men had brown hair—the son had more of it than the father. Neither man was tall, although the son came closer. The father wore glasses and had cheeks that chipmunked out when he smiled. The son was better looking in a nerdy sort of way.
“You have such little teeth, and such a small mouth,” the old man said as he poked around with a mirrored tool. “Please, open your mouth wide,” he said. “And close. Now open. And close.”
I sat in the big chair of peach-colored leather, or maybe pleather, and tried to ignore its cold, creepy feel. I heard the humming and whirring of dental drills and suctioning things, and smelled that awful mix of antiseptics, mouthwash and ground teeth while the two men examined me.
When they’d seen all they needed to see, the son filled my mouth with gunk that felt, smelled and tasted like Silly Putty. It sat heavily like a blob on my tongue. When the putty set, the doctors had their mold, and I could rinse and spit in the sink. Then the dad orthodontist brought my mom in from the waiting room.
“There’s not enough room in your mouth for all your teeth and your tongue, so we’ll extract four teeth and create some more space,” he said to me, I think, although he was looking at her. “We can move the teeth with braces to create a better smile and healthier bite. We’d like to get started right away.”
I wasn’t sure my teeth were tiny or that my mouth was too small or that any of this was a problem. They were my teeth in my mouth, and I had no trouble eating or smiling or talking so the whole set up worked for me. No one asked me though, and the experts thought something was wrong, so why let the situation get any worse?
In short order, I lost four teeth, lived on soup and applesauce for a few days, and healed just in time to go back to the orthodontists. On the second visit, my mom took a seat in the waiting room and settled in to read while the assistant showed me back to the big peach-colored chair, where I sat tipped back, looking for at least an hour at the non-glare lamp hanging from the ceiling. The dad orthodontist sat on one side and the son orthodontist on the other. They had me open my mouth as wide as I could, so wide that my jaw hurt and my neck ached, so wide that I wanted to scream but couldn’t because four hands were jammed inside my mouth—which at this moment, as they had said, felt tiny. They poked between my teeth and nicked my gums and jammed metal rings onto my molars.
When they had shiny cold steel circling all my teeth, the orthodontists went to work with an industrial-smelling glue, wires and pliers. There was more cranking and twisting and poking. I wished I could be somewhere else. I wished I were someone else. My sister didn’t have to do this.
I didn’t cry but could feel my eyes were glassy and unblinking as I sat, trying to breathe, staring at the reflection of my own teeth and tongue in the dad orthodontist’s glasses.
When they were finished, the two men escorted me back to the waiting room, had me smile to show my mom a mouth full of metal and told her I might experience some discomfort. “You can give her some aspirin to help her sleep,” the dad orthodontist told my mom, as if I no longer spoke the language.
That night, in bed, I remember thinking, They don’t know what discomfort means.
The first night with orthodontia is “discomfort” in the way an eighteen-car pileup is a fender bender. For me, the searing, cutting pain seemed most intense when I lay down and couldn’t find any place for my head. I couldn’t rest on my back, or on either side, and sleeping on my stomach was out of the question, because that meant my neck would twist and one side of my jaw would have to be in contact with something.
Little by little, night by night, the pain would lessen and I’d get more moments of sleep until about a month after the injury. I could finally sleep through the night, just in time to go back for another round. My mom would pick me up from school and take me back to the office building where father and son would probe my mouth and crank on the wires connecting all my teeth.
After a few of these monthly sessions, the orthodontists fit me for a neck gear—a scary contraption that attached to my back teeth and pulled the upper half of my smile toward the back of my head. It hurt like nothing I’d ever known. It felt like it was crushing my brain and forcing all twenty-nine bones in my head to rearrange themselves—which of course it was.
After a few months with the neck gear, the orthodontists decided I needed another device. The upper half of my smile was not only too far forward; it was too narrow as well, they said. My tongue was squished. I hadn’t noticed the problem, but they seemed certain that my tongue needed more space, or it would someday. A palate expander was called for. While I didn’t know what this was, I knew it couldn’t be good.
Powerless, I sat in terror, with my eyes wide and tearing, as the two men fitted me with a metal bridge that crossed the roof of my mouth and attached to two teeth on either side. There was a hole in the center of the bridge and a teeny key that fit into it. Every night I was to turn the key, which would push the bridge apart, widening the metal across the roof of my mouth, splitting my upper jaw and rearranging, yet again, all twenty-nine bones—pushing them apart from the inside.
If I had thought I’d never know any pain greater than the neck gear, this beast was a rude awakening. This thing hurt like the world was ending. And the worst part was I was complicit. The pain was self-administered. The orthodontists and my mother said if I didn’t turn the key, I’d have to wear this thing longer, so I turned the key. Like them, I feared that something worse would happen if I didn’t crank it a notch every night. It didn’t occur to me that nothing could be worse.
Every night I felt my head exploding. Sleep was out of the question and food looked like pain. I wore the palate expander, cranking it wider and wider, for months. And I went to school every day like I always did, although instead of sitting in the front and raising my hand to ask questions, I sat in back and tried to see over the pain in the center of my head, the center of my universe.
And then thankfully, thankfully, one fine day, the orthodontists told me it was done. The palate expander accomplished what they wanted it to achieve, so they removed it. I went back to being a kid with normal ugly braces on all my teeth.
Months later, the orthodontists told me the whole thing was done. They were ready to remove the dreaded bands. The two orthodontists organized their instrument trays and started the procedure, using a pair of pliers to yank the bands free from the cement they had used to secure them so long ago.
My mom sat in the waiting room reading, and I held my mouth open as wide as I could for as long as it took. And the removal seemed to take as long as the installation, but I didn’t care because this was the end. This was it. No more pain or suffering for a better smile.
The dad orthodontist took me outside to show my mom my new smile.
“Ooh, that’s great, Jody,” she gushed. “They’re beautiful. How do they feel?”
“They feel great. Let’s go.”
She made an appointment for a follow-u
p in one month. I said good-bye and we were gone.
One month later we returned, and the orthodontists had me sit in the peach chair and put me through the old drill, “Open, close, open and close.” I was watching them from such close range that I could see nose hair. And I could see that their expressions did not show joy. They looked concerned. Or worse.
The dad orthodontist went to the waiting room to get my mom. When they returned, he said, “There’s still not enough room. She has such a small mouth, and well, her tongue is going to move her teeth over time.”
I stared in terror and panic and confusion. I held my breath.
“What are you suggesting?” my mom asked.
“Well, we’d like to put the bands back on, and since we’ve gone as far as we can with the palate expander, there are other options to discuss.”
The son orthodontist stood silent.
“One thing we could try,” the dad orthodontist said, “is to shave down the sides and tip of her tongue.”
Now my eyes widened even more, and I screamed. “No way,” I said. “No. Way.”
And finally everyone looked at me as if they just remembered I could speak.
The dad orthodontist tried to talk me into tongue surgery. It’s not that big a deal, a minor, minor surgery—really, just minor. The son orthodontist nodded as if his dad were very wise. And someone said something about how this might sound bad now but it could prevent worse problems in the future.
The way I saw it was this: I had suffered through two years of pain they had designed specifically for me, and now they were saying that all my suffering didn’t matter, that it didn’t achieve their intended results. And, they added, if I knew what was good for me, I would submit to more.
I’d fallen for this once—this story that “there’s something wrong with you and we can fix it but only with extreme measures. So do as you’re told and don’t question the experts.” Two years later, I wasn’t so gullible. “No way,” I said. “No way. Uh-uh.” I unhooked the bib the orthodontists had snapped around my neck, put it on their instrument tray, climbed down off the chair that no one had lowered back to the ground and walked out of the office. My mom met me near the drinking fountain in the hall and we left.