Wednesday, May 10, 2017

Pre-existing Conditions

Unless you have been living under a rock (or avoiding social media), you have likely seen the clip of Jimmy Kimmel speaking emotionally of the birth and subsequent heart surgery of his new baby boy. Kimmel’s story lands for me with gut-wrenching familiarity. Nearly six years ago, my son (Caden) wrestled his way into the world with severe congenital heart defects, which we knew nothing about prior to his birth. Our story unfolded exactly as Jimmy describes: the careful nurse who saved his son’s life; the fear and emotion that lodges in the throat; the image of his baby with wires and tubes and a bandage engulfing tiny chest; the long list of people who carried them, quite literally, through the whole ordeal; the murmur we assumed was nothing, but ended up being something serious enough to warrant immediate open heart surgery; the happy ending that doesn’t preclude the tears. Watching his monologue, I can almost smell the antiseptic soap, finding myself immediately transported to our hearts torn open and mended by exhausting days and sleepless nights spent slumped in hospital chairs, the hardest and holiest road we have ever walked. After four excruciating weeks in the cardiac unit, Caden finally came home from the hospital with a feeding tube and a pre-existing condition, one we knew nothing about until it existed.
Two days before Caden's birth, we closed on our house in an Atlanta neighborhood where laughter and beauty were often punctuated by sirens, to start a non-profit fostering mentoring relationships with youth in the community. Since that day, five teenagers have spent time living with our family when they needed a safe place to land. Young men who helped rock Caden to sleep and politely sipped “tea” from pink plastic cups while watching my daughter host extravagant ballet demonstrations, who pushed our buttons and ate all our food, but each of whom profoundly changed our family for the better. Today, my newsfeed alternates Jimmy Kimmel’s emotional monologue with another familiar face, this one belonging to fifteen year old Jordan Edwards who was shot and killed by a police officer while leaving a party in a Dallas suburb this past Saturday night.

Jordan Edward’s pre-existing condition was that he was born with brown skin. I stare at his face, noticing his warm grin with lips closed over his teeth, the way he has carefully buttoned the top button on his bright turquoise polo shirt. He reminds me achingly of the boys who sit around our table for dinner, the ones who dribble and dunk basketballs endlessly in our backyard, and patiently play game after game of UNO with Caden who only has a tenuous grasp of the rules. I am finally coming to understand, as my neighbors have always known, that there can be no insurance for Jordan’s skin color, no assurance that the world around him and even those sworn to protect him wouldn’t deem him a threat and end his life too soon.

After Caden’s birth and heart surgery in 2011, he was immediately eligible for denial by healthcare companies, due to his “pre-existing condition.” Before 2016, when he had his second open-heart surgery, this law was changed under Obama, meaning we couldn’t be denied coverage because of his heart defect. Last week, however, the House approved Trump’s plan to dismantle much of the Affordable Care Act, including the part prohibiting insurance providers from denying coverage for pre-existing conditions.

The thing about pre-existing conditions is that you can do all the things you are supposed to do in order to avoid them. You can be a good person. You can take prenatal vitamins and drink lots of water, and avoid the siren call of Diet Coke for nine long months. You do everything right, and still your son can be born with a broken heart. You do all the things they say you should do: get straight A's and pull up your pants and button up your crisp polo shirt, play sports brilliantly and leave the party when things get too crazy. You can do everything right and still you live in the condition of your skin tone and end up with a bullet in your head.

After Caden’s birth and surgery, people told me “you’re so brave, I couldn’t do it.

Yes you could,” I would always answer with a shrug, “when it’s your child, you just do what you have to do.” Caden wouldn’t survive leaving his heart how it was, he would not have lived through our doing nothing. Likewise, it becomes increasingly clear that we can no longer survive doing nothing. When sons die and their brothers have nightmares about the hole in his head, when our sisters can’t afford healthcare, when rape is a pre-existing condition: we all need a whole new heartbeat. And that will begin, mostly, with a more communal understanding of our nation’s children as our own. Because when the chocolate close-toothed grin represents our child just as surely as the baby in the hospital bed, we will not be content to leave things the way they are.
Fixing Caden's broken heart required open heart surgery, a re-plumbing of valves and careful stitching of holes that left him with a jagged scar and a unique heartbeat. Fixing the system that calls blackness a preexisting condition in the first place will require cracking open our chests and replumbing our hearts, along with the programs and systems that have been built on the false idea that we will be able to avoid the collective cost of devaluing life.

This discrimination against those with pre-existing conditions reveals something about our own hearts, about the ways we assume our safety and longevity, and the ways we carefully avoid the things that remind us otherwise. When we are unfamiliar with stories like Jordan’s, when his face doesn’t ring bells of empathy in our hearts the way that Kimmel’s son’s does, then we turn away instead of towards. Because truthfully, even when coverage couldn’t be denied for pre-existing conditions, we sure knew how to make it entirely too expensive to protect the lives of those born with them. And it is costing all of us much much more than we have to give. Our very humanity is threatened by the steep price of innocent lives lost and hearts growing still and hard while the world bustles by unaware.

5 comments:

  1. Amen. Beautiful words.
    -Debbie

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  2. Yes. Beautiful. Thank you for sharing.

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  3. So well said. By a beautiful soul.

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  4. So well said. By a beautiful soul.

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  5. Wow. Thank you for sharing such profound words.

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