Adult Patient Experiences – Scarred

Uncertainty and life challenges do not disappear with age. New phases of life, new experiences, instead,  bring different ones our way, as Medical Student, Joe Burns, knows. Here, he shares with us a shift that happened in his life, after surgery as an adult due to his CHD. His story emphasizes the importance of  support for patients through the lifespan and the role adult patients can play for transitioning patients.

“Did you have heart surgery?”

The shy seventeen-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 its documents sorted by date, her matching shoes and shirt, her entire wardrobe without a single wrinkle.

Her health was a bit less perfect. She’d been born with an atrial septal defect (ASD)–a hole in the wall separating the heart’s right and left chambers. Tomorrow she was to have an operation to repair the hole, so she’d come in today, accompanied by her parents and brother, to sign the presurgical consent forms.

Vivian, the nurse, had given Sarah informational materials about her condition and the operation. With an air of poised self-possession, Sarah had read everything, asked appropriate questions and completed the consent form. She seemed quite prepared for tomorrow’s procedure.

Meanwhile, I’d been standing silently in a corner. As a third-year medical student doing my surgery clerkship, I was here to observe the interview.

Up to this point, Sarah had directed her attention to Vivian. Now, as she peered at me over her glasses, awaiting my answer, I felt flustered–and keenly aware of the two inches of scar peeking out above the V-neck of my scrubs.

I hadn’t expected to talk with her, much less to divulge my health history. Still, I thought, it’s only fair to share it; she’s accepted my being here while her own health was discussed.

“Yes, I did,” I said. “I had surgery about two years ago to replace one of the valves in my heart.”

Her eyes widened, and her features softened into a smile. All at once, she seemed much younger.

She studied the top of my scar (which is nearly an inch wide and runs down to my breastbone), and her expression turned to one of concern. I could guess what she was thinking.

“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 relived my two-month recovery period. As I’d worked to regain my strength and make the transition to medical school, I’d experienced a wide range of emotions, from wallowing self-pity to blazing triumph. Some days, I wanted nothing more than to sleep and be alone; others, I would run for miles. My prevailing thought throughout those months, though, was the loss of my privacy.

Up to that point in my life, my illness had been invisible to others. I’d checked in with my pediatric cardiologist every six months, but otherwise I felt normal.

After the operation, there was no longer any hiding: Wherever I went, my body broadcast my health history. I didn’t sign a release form permitting all of the stares I got at the beach or the pool; I didn’t consent to the uninvited queries, the pointing, the whispers–but nonetheless, they became a part of my life.

Talking with Sarah’s parents, I remembered, too, how stressful my own parents had found my surgery.

As anxious as her parents feel, I reflected, it must be comforting for them to see that she can look forward to a normal future.

In that moment, I became aware of what a strong bond Sarah’s question had forged between us. Having endured the countless echocardiograms, exercise stress tests, Holter monitors and EKGs that congenital heart disease (CHD) demands, we two shared a common experience and knowledge that no one else in the room could fully understand.

Soon, I reflected, she too will bear a physical reminder of her journey with CHD.

Throughout the rest of the visit, Sarah looked to me, literally, to confirm the information Vivian was giving her. It was as though my personal experience meant more to her than any medical data, however reliable.

When Vivian said, “The day after your procedure, you’ll be able to stand up and walk around,” Sarah glanced at me, and I nodded.

After several more of these silent consultations, Vivian actively involved me in the conversation.

“After you go home, you’ll be able to do everything you normally would, but it will take time to regain your stamina,” she said. “Joe, would you agree?”

“I agree completely. If you commit to your rehabilitation, you’ll feel better than ever after only a few weeks,” I answered, marveling at how my experiences of patienthood and vulnerability were empowering me to play an active role as Sarah’s caregiver.

The visit drew to a close, and the family prepared to go; we all shook hands. Sarah was the last to leave. Reaching up, she put her arms around my neck and hugged me.

“Thank you so much for being here today,” she whispered.

I feel grateful to have had the chance to share my story with Sarah. Our encounter reminded me that it’s not only pharmacology and procedures that make a difference in medicine; it’s also the relationships we forge during our struggles, and the bonds we share with those who are traveling similar roads.

I realize that my scar will always be a part of my identity as a physician and healer. It’s a doorway to openness with my colleagues and patients. I can never aspire to the image of the all-powerful, invulnerable physician. My scar is my humanity. There’s no escaping it; the evidence is etched upon my body.

Joseph Burns is a medical student at the Herbert Wertheim College of Medicine at Florida International University, in Miami. A native of Orlando, he is passionate about the arts and community engagement. His interests include congenital heart disease and American Indian health, and he hopes to pursue a career in adult congenital cardiology. His writing has appeared in Reflective MedEd. “During my recovery from heart surgery in the summer of 2015, I realized the importance of reflection in my healing. Though there have been times in which I have felt embarrassed about my scar, more often than not it’s a badge of honor, of survival. It’s an open door for advocacy and for connection with those who have endured similar battles.”

This piece was was also published  at https://pulsevoices.org/index.php/pulse-stories/1293-scarred

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