Joseph Burns just started his fourth year at Herbert Wertheim College of Medicine. He wants to be a cardiologist to treat patients like himself. Burns is an adult living with congenital heart disease (CHD); he was born prematurely with a bicuspid aortic valve. He had surgery for the condition the same week he accepted his invitation to join the Class of 2019. Here he shares what happened during a surgery clerkship when he met a patient who noticed the scar on his chest.
“Did you have heart surgery?”
The shy 17-year-old girl’s question caught me completely off guard.
Her name was Sarah. Everything about her seemed perfectly organized—her long, black braid falling ruler-straight between her shoulders, her folder with all of her documents sorted by date, her matching shoes and shirt, her entire wardrobe without a single wrinkle.
Her health, though, was a bit less perfect. She’d been born with an atrial septal defect (ASD), in which there is a hole in the wall separating the heart’s right and left chambers. Tomorrow she would have an operation to repair the hole. She’d arrived, accompanied by her parents and brother, to sign the consent forms.
Sarah seemed tense, yet poised. Having read about her condition and the operation, she’d completed the entire consent form, asked appropriate questions and seemed prepared for what awaited her the following morning.
I’d been standing silently in a corner. As a third-year medical student, my objective was to observe her pre-surgical consent process as part of my surgery clerkship. Up to now, she’d directed her comments and attention to the nurse responsible for patient education throughout the consent process. The six of us shared a small room to discuss her procedure; her brother and I were the only non-verbal participants thus far into the conversation.
Now, as she peered at me over her glasses waiting for my answer, I suddenly felt keenly aware of the two inches of scar peeking out above the V-neck of my scrubs.
As I searched for an appropriate response, I felt flustered. I had not expected to engage with Sarah, nor did I anticipate divulging my own health history. Though I am frequently asked about my scar, this track of conversation came as a surprise, a deviation from Sarah’s perfectly prepared mannerisms. However, I felt that sharing my story was a fair trade, as she had accepted my presence as we discussed her own operation. It seemed only fitting that I should be the student participant, having undergone the same process not too long before our encounter.
“Yes, I did,” I responded. “I had surgery a little over two years ago to replace one of the valves in my heart.”
Her eyes widened, and her serious expression softened into a smile; all at once, she seemed much younger.
As she studied the top of my scar, no more than two centimeters wide, running down to the base of my sternum, her expression turned to one of concern. I thought I probably had a clear idea of her thoughts.
“Don’t worry,” I said. “Your incision won’t be as long as mine.”
Her parents chimed in.
“You’re in medical school? How was your recovery? How do you feel now?”
Answering their questions, I recalled my own recovery. I had experienced an entire spectrum of emotions. I had wallowed in self-pity and had felt triumphant. There were days I wanted nothing more than to sleep and be alone and others when I would run for miles. However, the thought that prevailed most in these months was my loss of anonymity. For over two decades, I had dealt with my invisible illness. I felt normal, checking in with my pediatric cardiologist every six months. There was no longer any hiding. My physical body reveals my narrative, my health history without my consent. I didn’t sign a release of information for all of the stares at the beach or the pool. I didn’t consent to the uninvited queries, the pointing, the whispers.
All at once I remembered, too, how stressful my surgery had been for my own parents.
Amid all the uncertainty surrounding Sarah’s procedure, I reflected, it must be comforting for her parents to see that she can look forward to a normal future.
With her simple question, I felt, Sarah had forged an inextricable bond between us. Having endured the countless echocardiograms, exercise stress tests, Holter monitors and EKGs that congenital heart disease (CHD) demands, we two had a common experience and understanding that no one else in the room could share.
In just a few days, I reflected, she too will bear a physical reminder of the journey we’ve shared.
Throughout the rest of the visit, Sarah seemed to look to me as a steadying presence, a source of support and reassurance. Her gaze was directed toward me after every sentence, looking for confirmation.
“You will be able to stand up and walk around the day after your procedure.”
My approving, subtle nod toward her punctuated the statement. It was as though my credibility based upon my singular experience meant more to her than any data presented by the nurse.
After the third such physical approval of the information presented, the consenting nurse encouraged me to become a more active participant, affirming all of her statements about the recovery process. Instead of waiting for Sarah’s and my silent consultation, she asked for my stamp of approval with each subsequent factoid.
“After you go home, you will be able to do everything you normally would. However, it will take time to regain your stamina. Joe, would you agree?”
“I agree completely. If you commit to your rehabilitation, you will feel better than ever after only a few weeks,” I responded.
My role had evolved rapidly, in a manner that I could have never imagined.
The visit drew to a close, and as the family stood up to exit, I shook hands with each of them. Sarah was the last to leave. Reaching up, she put her arms around my neck.
“Thank you so much for being here today,” she whispered.
I was left to reflect that, paradoxically, my own experiences of patienthood and vulnerability also gave me a way to play an active role as Sarah’s caregiver.
Through my scar—the public, pink, vertical emblem of my infirmity—I was elevated from being a passive observer of Sarah’s consultation. I became an agent of hope and comfort during one of her most trying moments. We became partners in a joint quest to triumph over congenital heart disease.
I can never aspire to the image of the all-powerful, invulnerable physician. My scar is my humanity.
My scar peeks from beneath my scrubs as a beacon of truth—a constant reminder of humility, empathy and sincerity. It forces me to share my own history, building relationships with those who have traversed a similar path or have held the hands of loved ones who must traverse the uncertain roads of CHD.
I can never aspire to the image of the all-powerful, invulnerable physician. My scar is my humanity. There is no lying about my experiences when the evidence is etched upon my body. As I prepare for the next phase of my career, my permanent memento echoes the principles that have motivated me to pursue training as a physician. Truth, humility, passion, empathy, and above all, hope continue to resound in my developing practice.
I am grateful for the opportunity to share my story with Sarah. She continues to remind me that it is not only pharmacology and procedures that make a difference in medicine, but also the relationships that we forge during our struggles and the unspeakable bonds that we share with those who have crossed the same roads.