by David Ellenberg
When you and I met, the skin on top of your head was frail, blistered, and so chalky that it looked like it might slough off each time you removed that wool hat you wore to keep you warm. Your mouth had too many sores to allow you to ingest even a milkshake without grimacing; your arms were the color of a purple sky at dusk because they’d had more needle exposure than even the hallway carts in which those needles sit. I remember doubting whether I could comfortably shake your hand, wanting to preserve the little bit of inviolate skin you had left. Of course, you ultimately came to know my invasive hands perfectly well. Twice a day I pushed down on your pubic bone to examine your bladder, dutifully pinched your ankles each morning to check for water, and ran my fingers along the length of your neck and clavicles to see if your body could tell me what you could not. And your back knew my hands because I rubbed it as you gagged up your might into a basin, trying to convince you with those rubs that the dread would soon pass.
Your Mom never let you see her tears, and she never let you see the picture of you that she saw–the same one I felt with my hands–each time she walked into your room. You never heard our team combing through your cell counts and the inevitable variation on “how sad this is” that peppered the dialogue. There was a wall between you and the people who wept for you, one that was built, rebuilt and sustained by everybody except you. It was too hard for all of us because we brought into your room our ages and our pasts, knowledge and experiences, all of which formed our perceptions of what your time in the hospital must be like.
But you never cared about the blisters or the needle sticks or my ever-present hands. Your day was not about your chemo or your new CBC; it was about NBA Jam and Ken Griffey Jr. Baseball and Donkey Kong and other video games whose bells and noise gave your corner of the unit a wonderful hum. It was about avoiding the schoolwork that you were missing, the Jets game, and begging medical students to sneak you chocolate and candy and soda from the vending machines. It was about the jokes you tirelessly laughed at over and over again. Infusions and vomiting never phased you, and catheters or drains or unseemly bandages did not take away from your demeanor.
You only cried once, when Mom said it was bedtime and that you had to turn your computer off. I will not soon forget the surprise – and relief, really – I felt to see those tears, to know that what upset you most, what was most trying of all you’d had to endure, was losing time spent playing Sporcle. It hadn’t occurred to me until then that in spite of all the time we spent together that week, what you and I individually saw, felt, touched, tasted and heard could not have been less in sync. I liked to think there was near-perfect overlap between how I experience you and how you experience me. We hope our efforts are well-directed toward making you feel heard and that your concerns were voiced. But we forget too often to distinguish between what you want heard, and what what we think you want heard, what we would want heard. You reminded me of that in the most organic way possible. That is why I loved having you as my patient. And it’s why I’m glad I saw you cry.
You’re a brilliant kid (everyone on the unit talks about how much so), and you probably heard before I did that doctors go into medicine to entertain patients while they treat themselves. We bring our own stories to the bedside as we sit attentively to listen to yours, subconsciously to fix, heal, palliate, alleviate what we would find toughest to bear. It is all too often a rude awakening to realize that what I sense about you, informed by those stories, is entirely different from what you may want me to. I like to think that I use those awakenings to elucidate that about which I most worry, or that which gives me the greatest anxieties—my fears, struggles, challenges and triumphs. It’s almost like I would walk away from your bedside with my own diagnoses.
I was on an ongoing quest to figure out what I wanted out of practicing medicine. You made me realize that the most important word in that sentence is not – and cannot be – “I.” The word “practice,” you would tell me, is also probably wrong, because it’s not a verb which involves relating. It isn’t about what I practice. It’s about how we relate, and about our recognition of what we bring to that relation as individuals. And for that, I say thank you. Thank you for being my patient. And thank you most for letting me be yours.
All best, my friend. Please stay in touch.