X & Why
https://www.youtube.com/watch?v=qY7t2MBns8Q
It is easy to quantify my life in numbers.
I am twenty-five. I've had four cardiac arrests.
There were three extra open-heart surgeries following my transplant: because my new heart initially failed.
I've been the vessel for two hearts.
I've coded once.
I fall into the asterisk: in the tiny footnotes in textbooks that say there's a nearly negligible percent chance of any one of these rare complications happening to your patient. It’s really not an exaggeration to say it: they almost always seem to happen to me. And so, when you so often start falling outside of the medical median, the odds become pretty terrifying. But they're not the worst possibility.
Because nothing is more terrifying than not knowing who I am.
How does what has or could happen to us help inform our sense of self? How [do] the past and the future, the "x"and "y" axes of life, help define who we are?
For thirteen years I was a pretty normal kid. I had “normal” bumps and scrapes: a tonsillectomy, skinning my knees. I played literally every sport there was and I spent my summers dancing at musical theatre camp. And then, in the span of about thirty seconds, my whole world changed. There was no prior history to indicate that sudden cardiac death was possible, even likely, because of my barely thirteen year old heart. Statistically, I shouldn't have survived my first cardiac arrest.
But I did, and I became Leilani: the girl who has a heart condition. And suddenly that intersection of x and y began to move.
Over the next ten years I would continue to be that outlier: requiring multiple surgeries when one frankly should have done the trick: falling into rare device recalls, resets, and replacements.
So being that outlier it really shouldn't have surprised me that I would be in that 2-3 percent of HCM that would progress to transplant.
But it did. By now I sort of knew who I was: I'd grown to understand my restrictions. I grew up! I got my degree, I started a career, dnd my overly-strong heart was there for all of it. I knew my heart: it knew me.
And then this happened. This blessing that I didn’t ask for.
How was I supposed to reconcile losing the woman I had become with becoming a woman that I had given up any hope of being ten years before?
It's considered kind of ungrateful in the transplant community to talk this way, but I didn't want this. I did not chose this. This wasn’t me.
Everyone thinks you'll be really happy to have a new heart: to do all of things you couldn't do before.
I left the hospital unable to stand up on my own. The pneumonia that I developed from being bedridden for so long necrotized part of my lung. And then, of course there were the side effects. My hair, which I had long considered the best part of myself, fell through my fingers like sand. Tiny fissures of strain began to break under all of the water retention and drove claw marks down my waist. I did began to run for the first time in ten years, before, almost overnight, my knees were crippled by osteonecrosis from the prednisone. This wasn't better. This wasn't me.
But the funny thing is, life doesn't stop and wait for you to try to redefine who you are. It continues growing, it continues changing: and that intersection of x and y keeps criss-crossing with every new heartbeat.
I think what I've come to learn through all of this is maybe who we are can be defined by how we cope, with both where we have come from and where we are going. Where I come from has been rough and heavy, but it has also been rare and beautiful. It has been statistically pretty darn improbable, but it has been mine.
So who am I now? Well, I'm not a runner, and that pill will always be a little bit bitter. I'm not cured: I will always have a heart condition. But I am wiser. I am braver. I am humbled by my donor: by my team. And no matter what happens in my life, that’s who I’ll always be. Because when my eyes close at the end of my life I want to know I fought my damnedest to keep them open. And I want to know you fought your damnedest [for me] too.
Thank you.
"on gratitude and realism" ePatient Portrait Film, Dir. by Paul Shepherd, Prod. by Paul Shepherd and Larry Chu, MD.
"X & Why" ePatient Ignite! performed and recorded at Stanford Medicine X | ED 2017, made possible by Stanford Medicine X and the AIM Lab.