Friday, June 8, 2018

When the neurologist really knows how patients feel

I was on a camping trip in Jackson Hole with my cousins at 4 years old when I realized there was something different about me.

We were climbing a tree and I saw that, unlike me, my cousins used both hands to navigate its branches. Because I had a stroke when I was 8 months old, the right side of my body is hypertonic, meaning it does not move easily. I got stuck in the tree (as usual), and my mom had to come to get me down. As my cousins hopped out of the tree without difficulty and ran off, a question came to me. I asked my mom, for the first time, “Mommy, do all kids have a stroke when they are babies?”

A pause. “No, sweetheart. They don’t.” What had moments before been a benign fact of my existence suddenly became a frustrating impediment. I was angry that my right arm and leg were always stuck when I wanted to move them. It was not fair. “Can I not have a stroke?” I asked. “I don’t want it.”…

Twenty-three years later, as a medical student at Temple University, I stood in a pediatric exam room listening to my attending speak to our patient’s mother. He was describing motor deficits the 2-year-old would likely experience after surgeons removed the part of her brain causing her seizures.

“She will likely have trouble walking at first. With physical therapy, she might only have a limp. She won’t be right handed. She’s never going to play the piano.”

The surgery would damage the patient’s left internal capsule, as a stroke had damaged mine. The little girl was expected to grow up with functional limitations like my own.

My attending’s prognosis for her future was intimately familiar to me, as though he were narrating my childhood. Tripping so often when I ran that I have the scarred knuckles of a street fighter. Futile piano lessons and, later, struggling with typing. My complete inability to write with my right hand.

My mind wandered from the patient and mother in front of me. In their place, I saw my own parents sitting in an exam room, apprehensively listening to a neurologist tell them the same prognosis for their baby girl: “lifelong fine and gross motor deficits.” I imagined the fears of our patient’s mother echoing those of my parents and all parents hearing that the boundless potential of their child is to be punctuated by physical or mental limitations. I pictured our patient in the future, angry and frustrated that she couldn’t simply reach her right arm up and grab the tree branch as her friends could.

On the worst days, child neurologists are oracles of a terrifying fate to patients and their families. Parents fear that their child will struggle. Children fear they will be different.

However, more important than what child neurologists can prophesy for their patients is what they cannot. For all my doctor’s prognostic accuracy in my own case, he could not have known I would stay after school every day in kindergarten practicing the monkey bars until I could make it across. He could not have foreseen me playing high school basketball or 10 years of competitive mountain bike racing. He could not tell my parents that eventually I would even learn to play the guitar.

I was furious that day in Jackson Hole when my mom told me I would always have a stroke. However, from that fury came a determination that transformed my physical weakness into a mental strength and relentlessness to push against limitations.

Thankfully, child neurologists often fall short as prognosticators. Between the plasticity of a child’s brain and the power of play, the potential of pediatric patients depends on so much more than what doctors measure or observe during a clinic visit. I was lucky to have parents who encouraged me to climb trees rather than be limited by my disability. Sports, video games, music, friends, bedtime stories, drawing, climbing trees, going sledding, playing with dolls, building with blocks, rough housing with siblings, participating in childhood in whatever way possible, builds synapses and confidence. These in turn make a child both able and willing to do more, driving their recovery ever forward.

As a doctor who was once a patient, I want to use my story to help families cope with their children’s diagnoses. When my patients and their parents ask me to predict their future, my answer will not define the destination, but encourage the journey.

This summer, I will begin a child neurology residency program. Soon, mothers and fathers, like our epilepsy patient’s mother, like my own parents, will ask me “what will my child be like?” My experiences will inform my answer. Like my future patients, I have been embarrassed while struggling with activities other kids can do with ease. I have been angry. I have feared, fought and conquered limitations that had been set for me.

I can’t promise that my path will predict theirs, but I hope it will allow me to approach my patients with a particular empathy and understanding.

No comments:

Post a Comment