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.
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.