More Like Congenital Hot Disease

“The most chronic heart disease is caused by having greediness in your heart. Go for check ups regularly and learn how to swallow those lumpy pills of generousity. Be kind and be healthy.” ? Israelmore Ayivor

One winter night in my mid-20s I sat alone at my neighborhood dive bar. As I sipped bourbon and snacked on popcorn smothered in fake butter and hot sauce, a slurring fella slithered his way onto the bar stool next to me. He hissed hello.

A short while later he explained that he was born with congenital heart disease and had survived three heart surgeries. Then he asked me if I wanted to get busy with him since he was practically immortal.

Anyway, I think I caused him an arrhythmia when I told him that I was also born with congenital heart disease and had also survived three heart surgeries. I did not even miss a beat before adding that I wouldn’t get busy with someone who couldn’t be bothered to buy me a drink first.

I often lament the fact that this guy was such a snake. Almost 23 years have passed since doctors first operated on my six year old heart and I have never stopped wanting a heart-diseased friend. In my late 20’s, when a fourth surgery to implant a pacemaker became necessary, I felt more alone than I have in all my days.

I sometimes still do.

Sixteen months have passed since the implantation of my pacemaker, Sir Remington Watt. After the surgery, I sneered at the addition of a new scar to my chest. I felt intolerant to the foreign object in my body, to the smooth metal edges that protruded under my skin. I worried about dislodging the Leeds, about the battery failing while I slept.

I sometimes still do.

Yet perhaps my greatest struggle as a survivor of congenital heart disease is with how to cultivate a favorable self-image for a body that was not meant to live this long, with a heart that now depends on a machine to sustain its beat. The psychological effects of this disease are far more impactful than any of its physical symptoms, and I once needed a rest break on a flight of only 6 stairs.

And so I seek moments of gratitude in each day. I work to relinquish control, to release prediction, expectation and guilt. I do not know why I am still here, but then again I do not know why any of us are here at all.

I used to tell myself a story. The story started with a baby girl who was born sick. It ended with a discouraged and depressed young adult lady who told herself she would never feel good or able-bodied, that she would always be scarred and damaged.

I have started to tell myself a new story. I now tell myself that my congenital heart disease is more like congenital hot disease because my scars are so sexy. I tell myself that I am really fucking lucky to be alive. I tell myself that I am not alone. I recognize that at the core of my heart-related experiences rests suffering, pain, fear, anxiety, vulnerability, guilt, shame and loneliness. And that, well that is just the human condition.

If nothing else, at least I have a great pick-up line for those chilly winter nights.