“There’s a great neuro exam in room 5147,” my resident said as I dropped my bag in the call room. “Why don’t you go check it out?”
I clutched my reflex hammer in one hand and googled the components of a neuro exam with the other as I headed towards the stairwell. I was on my internal medicine rotation, early in my third year, and had just barely figured out how to find room 5147, let alone logging on to the EMR. Approaching room 5147, I adjusted the stethoscope draped around my neck, hoping it didn’t look as unnatural as it felt.
As soon as I met Jack, I knew I was about to learn far more than a review of the cranial nerves. His piercing blue eyes and full head of white hair suggested a richness of experience, yet his face was youthful with a bright complexion to match his gleaming white smile. In meeting his gaze, I realized I hadn’t understood what it meant to “have a twinkle in one’s eye” until that moment. The man beamed, managing to warm the fluorescence of his hospital room.
“I like to know people,” Jack said with his hands folded gently on his lap, looking curiously at the large medical team that had descended upon his room for rounds later that morning. He insisted that we introduce ourselves one-by-one, telling him where we grew up and our role on the team. I had never seen a patient take command of rounds like this before. Only after some lengthy introductions did he share details with us about himself and what brought him to the hospital.
Jack had traveled to us from Alabama. An architect by profession, he took Portuguese lessons, and practiced coding in his free time. “Something just isn’t right,” he told us. He described recent difficulty recalling basic vocabulary in Portuguese, unsteadiness in has gait, and a tremor in his hands. With a goofy grin, he joked that if we figured out what was wrong with him he’d design the nicest offices for us that we could imagine.
Off to work we went. Our differential was vast, ranging from simple vitamin deficiencies to devastating neurologic conditions. Each progressive day we spent furiously ruling out infectious, paraneoplastic, and autoimmune causes of Jack’s symptoms while he seemed to dissipate in front of us. As labs returned and ruled out the simple stuff, my stomach sank. I never could have fathomed hoping to discover a malignancy as the etiology for a patient’s symptoms until participating in Jack’s care. It’s never a good sign when you’re hopeful for cancer. One Friday morning as I placed my stethoscope on his chest, he grasped my wrist and forced out the words “I’m scared.” Me too, Jack. When I returned to his room on Monday morning he no longer knew who I was.
Creutzfeldt-Jakob disease (CJD) is one of those diseases you only know about because you read it in a textbook. Prior to meeting Jack, I could have written everything I knew about CJD on a post-it note: prion disease presenting with rapid onset dementia, personality changes, myoclonus. Associated with 14-3-3 protein in CSF. Incidence low, universally fatal.
Some refer to death as “dust to dust,” but Jack was a shooting star. Composed of dust and rock, sure, but particles leaving a streak of light in their wake as they barrel through the atmosphere. When the light fades from sight just an instant after being spotted above, one can’t help but to pause to acknowledge the vastness of the world around them. And for a moment, everything seems to have just a bit more meaning.
As I moved on to my next rotation, Jack lingered in my mind. Lying in bed one night, exhausted but unable to sleep, I opened my laptop and typed his name into google. I wasn’t certain what I was searching for, but when I scrolled past his obituary I felt compelled to click it. There, in a local paper, was a beautiful description of the vegetarian architect from Alabama who cared ferociously for his community by offering kindness and respect to those around him. I felt an odd sense of relief. Relieved to have confirmation that even though I only knew Jack for a brief blip through difficult moments at the end of his life, he had revealed his true self. I really did know him.
Editor’s note: All patient information has been changed to protect patient privacy.