I did not know I was living with illness until genetic testing at age twelve, but I felt the thrum of worry and what-ifs around me. Long before receiving my diagnosis of Familial Adenomatous Polyposis (FAP), I was aware that my mother had been in the hospital for surgeries on her stomach: a two-part total colectomy surgery when I was in first grade and later a lysis of adhesions when I was in fifth. These scars were layered on top of her C-section scar from my birth and her appendectomy scar and earlier subtotal colectomy scar from her adolescence. Children know the feelings around the truth, even if they do not know the facts. Even if you do not tell them.
For over a decade, I got two colonoscopies a year to monitor my polyps. My mom and I experimented with diet and alternative medicines and had some good results. When my pediatric gastroenterologist proved lacking in bedside manner, my mother’s doctor bought a pediatric scope and started seeing me years earlier than he had originally planned. Dr. Meyers gave me choices for the music I wanted to listen to during my procedures, told me about what his kids – around my age – were up to, and always kept me involved in decision making. When we finally determined that it was time for the colectomy, it felt like a decision independently mine, even though he had guided me through the past twelve years of clinical junctures. I felt loved and cared for and empowered in the sheer awfulness of this fate. Dr. Meyers was the one who talked to me on the phone from my hospital bed when I developed a post-operative ileus (blockage) that lasted a month and required an NG (nasogastric) tube and a PICC (peripherally inserted central catheter) line. He told me I had made the right decision to have the surgery, and I could tell he truly believed this. Eventually, I got better and knew he had been right.
How do we reconcile our experiences, awful and beautiful? So often, we are drawn to extremes: avoiding the site and content of the trauma or immersing ourselves in it. I felt at home in the clinical and grateful and indebted to its innovations and providers, while also saddened and robbed by all the interventions I had endured from a young age. Even though I had lost blood and parts of my body in this setting, I had received more life back. I wanted to be an agent of healing, and, in the process, I wanted to find myself more emotionally healed.
It took a few years of college and some time shadowing different types of physicians, including Dr. Meyers, to realize that what I wanted to be was not a physician but a supporter of physicians’ and patients’ stories, independently and in relationship with one another. I discovered medical anthropology, health psychology, and medical family therapy. And I never looked back. Today, I get to train family medicine residents in behavioral science. I get to cultivate their commitment to care for and serve those who need them most. I get to sharpen their tools for patient engagement and interaction to increase the likelihood that in the clinical encounter all parties–physicians, patients, and family and care team members, alike–feel connected, understood and heard.
Two years ago, in an unsatisfying job and a destructive marriage, my daughter was born prematurely and stayed in the children’s hospital associated with the health system in which I now work. I had no idea at that time that I would someday drive past that hospital on the way to work, that I would land my dream job, or that I would leave my marriage. I did not yet know that I would learn that my daughter, with a 50/50 chance of inheriting FAP, would have the coin fall on the hoped- and prayed-for side. Today, I am grateful for this and for the opportunity every day to delve into the shape of human experience around the clinical encounter; that I get to better know and nurture hearts–my own and my colleagues, students and patients–with all their holes and fullness.
Aubrey Koehler Hildebrandt
Winston-Salem, North Carolina