Note from the Author: In April of 2023 I was diagnosed with a congenital heart defect, or adult congenital heart disease. In September I underwent open heart surgery to manage the complications caused by my defect and, ideally, improve my quality of life while reducing my risk of a serious cardiac event. This essay is a reflection on the very personal experience of my diagnosis, surgery, and healing process.
Recovery was initially a swiftly flowing creek, crisp and clear and determined. But eventually stagnant, tepid and murky and bearing signs of decay. Progressing through the days sometimes with urgency, other times with languidness. Winding peacefully through the landscape, birdsong alighting, sparkling in afternoon rays. Tumbling over rocks, crashing against unexpected obstacles, all turmoil and violence. Disease presents itself as an interruption. A place of grave solitude. Sometimes angry, sometimes hopeless, sometimes manic, sometimes fearful. A place where your body both inspires and fails you. Where life is a contradiction. Confusion and humor and absurdity and stark, searing pain. When your body is your home, and yet a stranger. This vessel of joy that I have known all my life, and yet can’t fathom. I am proud of all that my aberration has borne, and yet I am betrayed.
The heart is a profound metaphor. A ubiquitous symbol that saturates our language and our culture. Both the core of our vitality, tissue and vigor, as well as the profoundness of our existence. The awe, the excruciating ferocity, the great mystery that carries us through. And yet nothing is as difficult as rolling over in bed at 3 am. Who knew? Supine and simply unable to fathom how to get up. Panic and dismay. Who knew? Lost grace, lost autonomy, but a stubborn clinging to vibrancy, even when it feels far, futile, absurd. How could I not have known? How could I never have known that the essence of my being was flawed? Bitterness. Bitter pills, bitter days, bitter acceptance. Deep breathing, arrested. Fluid, accumulated in spaces designed for air. A spine that instinctually begins curving itself inward, a gesture of protection and safety and comfort. Stretch, but not too far. For you’re cracked down the middle. Their word, not mine. Like a piece of abandoned crockery, a stretch of sunbaked soil sapped of moisture, an ancient trunk split by shards of lightning.
Somewhere in between the fear of an unknown ailment and the relief of a diagnosis with a plan for moving forward is the realization that your fate is open heart surgery. Coupled with the awareness of your own inability to be idle and your crippling discomfort with asking for help. The words of those to whom this experience is foreign are genuine, well-meaning, but generally empty and unhelpful. You’re young. You’re so strong. You’re handling this so well. You’re recovering so quickly. As though youthfulness or a brave face or a steady mending nullifies the trauma? I feel profoundly debilitated. Cut off at the knees. How do you explain to someone what a diagnosis of congenital heart disease feels like? How do you explain to someone what it feels like to wake up after having your chest split open? You don’t. That inexplicable sensation of your core being held together by literal wires. This I cannot describe to you. And now this angry red line that bisects you, undeniable. That you wear with pride, that you find powerful and affirming, but strikes most with shock and unease. How many times can I work my chest tube holes into the conversation, just to see how people react?
I have been reading on recovery and convalescence, on disease and illness, on injury and pain. Convalescence is an old-fashioned term, a word that rolls across the tongue like idleness and apathy and cocktails in the Alps. And yet, while healing is a physical process, it is mostly a spiritual journey. A body knits itself back together generally on autopilot, an innate commitment to survival, but a mind or spirit unwilling or uncertain or disengaged is really just a slow death. Healing calls for stubbornness yet pliancy, liveliness yet calm, defiance yet patience. And underneath it all, a willingness to show weakness, but not too much, because people would rather see you unbroken. What is the cure for the malaise that often accompanies a lengthy recovery that lacks linearity? A distinct and separate undertaking from the raw animal process of mending flesh and bone and nerve and sinew. How do we manage the acute fatigue of healing? My healing (it is not as simple as recovery, as I have been irrevocably altered) comes with the changing of the seasons. In the transition to winter, there is a healing inertia, a quiet but crackling energy, a subtle yet heady shift, a fresh frost promising renewal through rest. In the sugared peaks and the blistering mountain air I find hope, serenity, the fortitude to carry on through the pain, the despondency, the inevitable plateaus of healing. Every day is a little bit better. Because at the end of it all, every day is a little bit better.