How I Rewrote the Story of My Heart Defect

Stefan Van der Straeten
Stefan Van der Straeten

By Camille DePutter

I was born with a congenital heart defect called “complete heart block.”

It was not a tragic or even particularly dramatic condition. It was certainly not visible or noticeable to the rest of the world.

In other words, it was easy to hide.

In simplest terms, the condition meant that my heart beat slower and more erratically than it should.

Growing up, there were subtle differences in what I could do. I often fell behind the other kids in gym class. I’d tire faster, go slower, or struggle to keep up. Endurance sports were out of the question.

And although these are tricky things to measure, I think I had to work a little bit harder in daily life than most kids. I got used to pushing through, compensating for a slower heartbeat throughout the everyday stuff like going to school, playing on the playground, and generally participating in the frenetic pace of youth.

But none of these physical limitations compare with the internal limitation.

For me, the heart defect wasn’t so much about what I couldn’t do.

It was about what I imagined I couldn’t do.

And, for that matter, what I imagined I must do — how I must compensate for this perceived deficiency.

People were quick to decide for me what my heart defect meant. And they often gave me conflicting interpretations.

For example, some gym teachers offered me a chance to opt out and sit on the sidelines (an offer I defensively declined). Meanwhile, other instructors told me to quit complaining and keep on treading water or running laps, even when I genuinely did need a break.

At hospital appointments, doctors and nurses insisted I list my symptoms, expecting me to “act like a patient” even when I felt fine. But when it came time for surgery (more on that later), my cardiologist acted like it wasn’t a big deal and I should be able to walk it off.

My parents wanted to let me be, and they didn’t hold me back from anything. But I could smell their anxiety and fear a mile away.

While all of these examples are imperfect responses, they are also normal. None of these people really knew exactly what to make of me and my unusual, invisible situation.

These are examples of other people’s stories. But their stories weren’t the real problem.

Mine was.

Without even realizing it, I took these bits of conflicting information and this quiet, constant buzz of fear, and I wrote a story of my own.

Subconsciously, a script played:

Bury the weak parts. Hide what they might reveal.

Be stronger, smarter, tougher, better.

As for the hidden flaw: Deny. Deny. Deny.

What a heavy, silent load to carry. It took years to put it down.

What changed?

When I was 20 years old, my doctor told me that I needed a pacemaker to correct the situation.

The reality of heart surgery was a head-on collision into the impenetrable veneer I’d tried to create, inside and out.

Confronting my fears — my phobia of hospitals, my fear of being permanently scarred and marked as “different,” my desperate desire to keep this whole thing a secret — made me feel exposed and deeply vulnerable.

In other words, I hated it.

But it was also the start of being true to myself.

Life didn’t change right away. This was a long process. I’ll be honest: I had my first pacemaker surgery 15 years ago, and only now am I willing to write about it without shame or reservation.

And yet, bit by bit, I made progress.

I slowly — very slowly — started to tell my story.

For the most part, I told it to my journal. I wrote, exploring what I felt inside, what it all meant. I poured out my feelings and I re-examined some of my beliefs, turning the ideas upside-down on the private page.

Then I wrote my experiences into a (ultimately shelved) novel, letting my character interpret and respond to the same challenges I’d faced.

Sometimes I revealed my secret to carefully selected friends. I told a trusted therapist.

Occasionally I would confide in peers only to be racked with anxiety later, but still, I gradually disclosed and, amazingly, my world didn’t fall apart.

As I got older, I discovered I had more room for imagination, and less room for being someone I’m not.

I realized it was up to me to write my story for myself. Not just in my journal, but in my real life.

And that meant doing some major rewrites.

Instead of fearing my perceived weakness, I began to challenge myself with new physical activities. With a pacemaker in my chest, I could do anything I wanted to, if I was brave enough. I discovered I could climb mountains, and I could even run races.

Instead of trying to be strong and tough all the time, I learned to embrace my sensitivity as a superpower that helps me write, create, and even help others.

And instead of denying, I learned to share. To speak up, be honest, and show my imperfect, work-in-progress self to the world.

Best of all, instead of being overcome by silent fear, I let myself wonder: What else could I do, or try, or discover?

This mindset of discovery, imagination, and creative self-storytelling has been a guiding force in helping me be myself and live a much fuller, more satisfying, more fulfilling life.

Today, my heart is my message, my totem, my calling card. I show off my scar. An anatomical heart is tattooed on my back. Heck, my heart story is even the basis for my business: Storytelling with Heart.

My disability used to be a hidden secret. A source of shame.

Today it is a power source. Not just for me, but for others. Owning my story may encourage someone else to own theirs. To rewrite their self-limiting beliefs. To be a little more true to themselves.

I believe we must write our stories for ourselves, or we risk letting others write them for us.

We risk missing out on the most beautiful, powerful parts of ourselves. And we risk ignoring the opportunity — maybe even the responsibility — to help others.

So this is my call to you: Don’t miss the chance for your own power and potential to come to light.

Don’t hide your flaws. Don’t accept other people’s stories as your own.

Write your own story, and share it with the world.

Once hesitant to share her own story, Camille DePutter is now an author, speaker, and blogger — and an advocate for everyone who has a story inside them. Camille runs Storytelling with Heart: a communications consulting and publishing business that helps people share their inner stories with the world. Her book, Share Your Storyis a workbook designed to help people practice personal storytelling for self-empowerment.