“I want to be a pediatrician” is what I wrote in my elementary school yearbook. “I’m going to be a pediatrician” is what I told friends and family at my high school graduation. I had spent my entire young adult life dedicated to this mission. I wanted to be the best doctor I could be, and so invested in everything I understood at that age to be the “right moves”: I was a Siemens Westinghouse semi-finalist, biological sciences major at an Ivy League school, and recipient of a prestigious research scholarship that allowed me to study at the University of Cambridge.
I suspected I was missing something though. Reviewing my science-intensive curriculum, I recognized that healthcare was more than the molecules I built in organic chemistry and the fruit flies I counted in genetics. But I couldn’t identify that missing piece. You don’t know what you don’t know.
As I began my junior year, my advisor recommended I take this anthropology and sociology of the sciences class. It seemed harmless enough, not knowing what anthropology or sociology really meant. There I read “The Spirit Catches You and You Fall Down” by Anne Fadiman, a story about the complexity of the healthcare system and the importance of communication. And ultimately, a story that would divert the mission I had studiously worked on the past 15 years.
“The Spirit Catches You and You Fall Down” follows the care of Lia Lee beginning at her first seizure when she was three months old. The fact that she was misdiagnosed by a resident during that initial visit foreshadows how intricate her care would be. The 14th of 15 children born to Hmong refugees in Merced, California, Lia’s care was wrought with miscommunications and misunderstandings between her family’s traditional Hmong beliefs and the regimented science and principles bound in western medicine and her care team. Both sides worked relentlessly for Lia’s best interest. Both had different ways of doing so and different interpretations of what was best for her. Worst of all was the contentious dance between the two as they figured out that while their efforts were working towards similar goals, they counteracted each other.
I grew increasingly frustrated as I continued reading Lia’s story and suspected that the spirit that caught me wasn’t that of becoming a doctor, but of helping people. It was this story that showed me the dynamic care team in play when someone is sick, beyond the doctor and beyond those employed at a hospital. More so, it highlighted the gaps in the healthcare system. While there are plenty of gaps in health care, the ones I care about are the voids that exist of all things unsaid. After all, you don’t know what you don’t know.
The story of Lia and news of her recent passing is a reminder of why I do what I do. The spirit of healthcare caught me at a young age. But my specific mission now, and that of Blue Cottage, is to discover, decipher, and give voice and vision to all those unknowns. It’s to see the nuances and recognize that nothing is a nuance when someone is sick. It’s to understand intimately everything and everyone involved in a patient’s care.
In the midst of healthcare reform, incredibly important discussions around the cost of healthcare, and the noise all that creates, it’s rare to be reminded that those who work in this field often choose it because of its spirit. Like Lia’s family and her care team, everyone wants the best for the patient. Beyond the fancy coats and shiny gadgets, that’s the spirit of health care. And it’s that spirit we take into each and every project.
Cecilia S. Lum, MHSA, is a Healthcare Consultant at Blue Cottage Consulting.