She was absolutely perfect. She had ten perfect fingers and ten perfect toes. Her eyes were wide and curious and drew you in fondly. She was absolutely perfect everywhere — everywhere except for her nose and mouth. She was born in 1959 with a unilateral complete cheiloschisis and palatoschisis, more commonly known as a cleft lip and palate. Where her perfect, beautiful nose should have been was an empty, gaping hole. As she matured and developed, she endured multiple surgeries nearly every year for the first thirty-two years of her life. She endured years of name-calling and self-deprecating thoughts. As a child, I could never have surmised the magnitude of hurt that had been fastidiously submerged beneath a barely visible scar above her lip, but it was there just beneath the surface in her thoughts and relationships and career. She was my mother and she opened my eyes to the both the miracles and fallibilities of medicine.
I learned of my mother’s birth defect when I was eleven years old. Over the next several years, I would spend countless hours poring over videos from Operation Smile and later, documentaries from the Smile Train. I quickly became enamored with the surgeons in the HBO documentaries, and the precision they used during operations. Every last stitch was performed with the unfaltering focus and skill of an artist adding the final strokes to his masterpiece. I believe medicine is the purest form of art. It isn’t about necessarily seeing the beautiful and recreating it, but about being able to see insurmountable beauty in the mundane or even reproachable and expose its truest form to others. It’s about communication and connection through the medium of basic humanity.
While my mother’s birth defect ignited my initial curiosity for medicine, my own personal experiences exposed me to the complex nature of physiology, pharmakokinetics and doctor-patient relationships. The summer before my junior year of high school, I was rushed to the emergency room. This emergency room visit was the start of a six-year somatic battle with postural orthostatic tachycardiac syndrome, an illness my cardiologists believe was precipitated by the Epstein-Barr virus. This diagnosis took two years, four cardiologists, twelve medications and dozens of tests to make. The first year I fell ill, I missed 37 days of school. The days I could manage to go often included as many visits to the school nurse and frantic calls to my mother as they did classes.
During this time, I learned that doctors, like artists, have different styles. There is the cold, yet clinically brilliant physician. There is the cocky, self-assured physician, and then there is the quiet and gentle listener. Dr. Wendt, my primary cardiologist, was a brilliant physician with the unique ability to communicate complicated physiology effortlessly to an adolescent; he listened and spoke to me with empathy and compassion. When I stepped into his office, instead of fear, I felt comfort. I knew that he would do everything in his power to ameliorate my symptoms if he could not cure them all together. During every visit, he saw past my current symptoms and instead saw the potential for me to be the best, healthiest version of what I was.
Over the past several years, I have kept these distinct styles in mind as I have refined my own manner of approaching patients. Some of these skills developed in the classroom or on the wards. I learned how to actively listen to patients: to cue into the unspoken wringing of their hands, the biting of their nails or the barely audible catch in their voice. I learned how to explain complicated disease processes to both fellow health care providers and mentally impaired patients. However, most of my new skills were gleaned in more private moments — in hearing my brother’s frustration and weariness at having been diagnosed with metastatic papillary thyroid cancer, twice in two years. I learned how important hope is to care, and how acutely its absence is felt. I learned that trusting your instincts, taking an extra minute to double check labs, and apologizing when you’ve made a mistake, can maintain trust, lead to better care and save a patient’s life. Finally, I learned how to push through my own anxiety to concentrate on the task at hand — to focus on what I can control and do my best to let go of the things that I cannot.
When I see children who suffer from birth defects or disease, I see my brother, I see my mother, and I see myself. In them, I see the potential to become self-assured and independent, confident and full of love, but I also see a need. Many of these children cannot reach their full potential without physicians willing to give their skills and time. My mother was made to feel so ugly on the outside that she began to believe that her exterior blemishes were present on the interior as well. She was so ashamed to look at herself in the mirror that she couldn’t see the immeasurable beauty that lay beneath the surface. She once told me that children who require and undergo surgery are not trying to standout; they just want to blend in. When it comes to health care, I finally understand how beautiful banality can be. If there is one thing I have to give this world, and children like this, it is my time and my passion — my passion for the art of medicine and my desire to change perspectives one patient at a time. In my soul, I am an artist and my desired medium of choice is the human body.
Sarah Mongiello Bernstein is a medical student.
