"Promise you won't be an ass."
Sudesna, my classmate, first told me about Sarah Walsh over a dinner of Thai green curry. Sarah, a 23-year-old girl, was hospitalized due to worsening difficulty with swallowing and moving her fingers. Sudesna knew I'd be interested in Sarah's case, but feared my tactlessness. As a third year medical student, I had learned some of the science and ignored most of the art.
When Sudesna and I visited Sarah the following morning, she was lounging in cozy-looking plaid PJs and glasses that reminded me of Liz Lemon from 30 Rock. I couldn't decide if her shoulder-length brown curls looked more like Titian's Venus or Botticelli's. Her dense brown curls tumbled down her shoulders and disappeared beneath a patchwork blanket that looked like the Berkshires in Autumn. Instead of the typical sterile hush of hospital rooms, there was a jolly ambiance of ugly sweater Christmas parties. Sarah's parents, brother, and three sisters emitted quips and giggles without warning. Sarah squinted at us for a lingering moment and decided that we could join the party.
Sudesna had Sarah's latest CT scan results. It showed a lesion in her brainstem. The differential included scary things ranging from cancer to infection. Most people, faced with such information, ask for their chances and their life expectancy. Instead, Sarah sternly asked us not to prognosticate because she was determined to "beat" whatever it was, finish college, and have three kids. All we could say was: "Yes, ma'am."
A biopsy was planned to demystify the shadow in her brainstem. As I was on my neurosurgery clerkship, I became further involved in Sarah's care. Most people get understandably nervous about needles in their brains. Sarah seemed relatively undaunted. She waved aside our myriad disclaimers and asked about our plans for her hair.
We were confused: "Hair? What do you mean hair?"
With a piercing look, she told us that her neurologic well-being trumped her follicular well-being by a narrow margin. She only consented to the procedure after the attending promised that minimum blood and hair would be shed.
I later complained to Sudesna: "Sudesna, it's HAIR...it grows back!"
"Pranay, think about what it means to her."
"You mean it's not just vestigeal keratinaceous biomaterial?"
"It just seems like a HAIR-brained request...see what I did there?"
The next day, as her eyes fluttered close on the surgical table, she charged me with guarding her hair. She needn't have worried. The surgeon parted her hair with singular precision using a comb and widened the parting by just a few millimeters- Sarah's will had prevailed in the OR. As the biopsy proceeded, I mulled over Sarah's strange obsession with her hair and had a sterile-eureka moment.
It struck me that disease attacks our identities in addition to our bodies. Appearances are the first to go. Even superlatively fastidious individuals embrace unkemptness when sick. Worse, illness keeps us from fulfilling our personal and professional roles. Hobbies begin feeling unsavory too. Hospitals exacerbate matters by placing patients in nondescript gowns that cover their bottoms capriciously, issuing them boring white blankets, and referring to them as "pancreatitis guy" or "Forty year old male." Thus, we rob fascinating people with transcendent dimensions of their uniqueness, their panache, and even their personhood. I suddenly felt proud of Sarah for defying this routine dehumanization and defending her "vestigeal keratinaceous biomaterial."
My reverie broke when I was handed the biopsy of Sarah's brainstem to rush to the lab where the pathologist made a grim pronouncement: glioma. My heart suddenly became a thousand pounds heavier-- Sarah had a life expectancy of 10 months.
The biopsy left Sarah with a slurred voice and a limp right hand, but she continued to smile- albeit crookedly. I was still forbidden from sharing her prognosis so I hid my foreboding with juvenile jokes.
"How do you make holy water? Take tap water and boil the hell out of it."
Sarah's sisters joined in and her phlegmatic father contributed occasional grunts. Feather-light molecules of laughter wafted into the ward's hallway, but our eyes betrayed the leaden heaviness in our hearts.
She was discharged the next day and sent me a left-handed auto-corrected email: "Thank you for the smiles. I have many things to do in this life and many years to do them. Don't equate me with those kids on St. Jude's late at night!"
I promised I wouldn't.
Five months later, she returned for palliative radiation. The ugly sweater party was still on in her room. Sarah looked shrunken, her facial droop was worse, and she now sported a purple patch on her left eye to ward off double vision. She couldn't speak anymore, but communicated tenaciously by pointing to letters on a chart. As I surveyed the ravages of her cancer, I noted with quiet satisfaction that it had not touched her prized curls.
Sarah dragged her skeletal left hand over her laminated chart to ask me a question: "I know you believe in me, will I make it?" The Walshes looked grave, the laughter evanesced and the underlying tension was unroofed. She had asked this question over and over to her family and her doctors as the tumor's toll became apparent. The only answer she allowed was "Yes."
I buried my chin in my right hand and felt the never-comfortable sensation of a dozen eyes upon my person, urging me to say "the right thing." Before I could yield to the temptation of an easy answer, unrehearsed and unconsidered words poured out.
"I don't know if you'll make it to college, to motherhood, or even to tomorrow. What bothers me is that you are sacrificing the time you do have with your amazing family at the altar of a flickering future. You worry about your legacy, but forget that you've already created one by teaching students like Sudesna and me. From you, I have learned the enormity of our work in medicine; the necessity of doing it with love and humor; and defending our patients from the dehumanizing experience of disease." We hugged and my right shoulder felt damp. She did grin for a photo with me afterwards.
One month later, Sarah's sister emailed me: "Early this morning, just after midnight, as the snow began to fall outside, Sarah stormed heaven with a skip to her step." Every so often, I see girls with dense brown curls that remind me of her and how she shaped me as a physician. I always smile with the satisfaction of a fulfilled promise: I hadn't been an ass.