Born With a Broken Heart (Part I)

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This week, with very little pomp but quite a lot of circumstance, I received my new health insurance card in the mail. I also got my first premium bill, a true sign of inclusion in the language of American capitalism. It may not seem like much to celebrate (“Yay! More money I owe!”), but this marks the first time in my entire life that I have been able to have health insurance independent of a job, school, or parent. So while delivery of the membership card required only a small step for my mailman, it represents one giant leap for this womankind.

We have heard a lot of stories since October 1st about people with dire medical needs getting life-saving help because of the Affordable Care Act. I celebrate for them, though I am not among their ranks. There are also countless stories of people with individual insurance being forced to change plans, or change doctors, or pay more because of the ACA. Some are my friends, and I understand their frustration, but I am not one of them either. I represent an under-reported third category: those for whom it would be irresponsible to go without insurance, but have not, until now, had access to individual coverage.

You see, I was born with a broken heart (more accurately, a congenital heart defect). The engraving on my Medic Alert bracelet reads, “ASD closure ’79; mitral regurgitation; VPB’s,” which sounds like either a Daft Punk set list or a sketchy Craigslist ad. But for you bi(ology)-curious out there, I’ll give you the gist:

ASD stands for “atrial septal defect,” which is a fancy way of saying I had a big hole in the wall that is supposed to separate my left and right atria. This hole was also low enough on that wall to mess up my mitral valve, which in most hearts operates like a set of French doors (opening in one direction) but in mine swings both ways like saloon doors. While this does make my heart sound John-Wayne-level badass, it also means a lot of blood that is supposed to go one way flows back the way it came. Not so great for pumping action.

All of this was repaired with open heart surgery in 1979, when I was two. My mitral valve still leaks a little (“regurgitates” – gross), but not at a dangerous level, and the scar tissue from the patched hole occasionally lets the electrical signal – which normally travels around the chambers pumping them in sequence – jump through the wall, causing ventricular premature beats. I got rhythm, but my heart stutters. Still, I don’t see anyone denying Porky Pig health insurance, so why hold it against me?

In June I will celebrate the 35th anniversary of my life-saving surgery, and for most of those 35 years I have existed in an insurance categorization limbo. Not actually sick, as many with “pre-existing conditions” are – I do not have diabetes; I do not have cancer; I do not have a parasitic infestation known as “baby” on board. In fact, since the surgery, I have heard doctors marvel time and again at how healthy I am – I do better on stress tests than most “normal” people; I eat well and exercise regularly, don’t smoke or drink in excess; my cholesterol and blood pressure are fantastic… I have passed every physical I have had since the surgery with flying colors. My nerdity isn’t just for the classroom – I overachieve everywhere.

And yet, because I had the surgery as a child, I have never been considered “healthy” by insurance standards. What I am, they never determined, but not “healthy”. Because I am among the first generation of patients to survive into adulthood after such surgeries, the insurance world had no category to define us. Sick, but not really. Healthy, but not really. So, in a true act of humanity, they avoided the complexity of evaluating each case on its merits and instead labeled us “heart condition” and tossed us in the no pile. Every time. No amount of appeals or doctor testimonials or medical records made a difference.

Now, listen. I love my broken heart. I love the big old scar down the middle of my chest. It has literally been a part of me for as long as I can remember (my earliest memory is of coming out of anesthesia in the recovery room, though it is really more of a feeling than a memory). That scar has been incredibly useful to me in life. For one thing, I always win the scar game in getting-to-know-you situations such as camp or parties. “Oh, you hit your head on the corner of a table as a kid? My chest was opened with a buzz saw and then wired back together.” Drop mic, walk away.

In high school I realized that my scar can tell me when a guy finds me physically attractive. The boys on the baseball team used to put the necklaces bought for them by their girlfriends on me (their statistician, naturally) for safekeeping during the games. One day, I wore a T-shirt that was a little tighter than usual, and three of them asked how I got my scar. Eyes up here, boys, but thank you for noticing I have nice breasts. That question remains a reliable attraction indicator to this day. I have “scar-dar” instead of “gay-dar”.

My scar is also not-quite-vertical in its path from sternum to navel, which is maddening for an obsessive-compulsive perfectionist like me. But that is its best gift; if I ever need a solid reminder that not everything in life can be perfect or controlled, all I have to do is stand topless in front of a mirror.

As for my broken little heart itself, well, it pretty much defines me. First of all, it isn’t little. For more than two years, it did everything it could to keep me alive long enough to make it to surgery, including halting my growth after six months to maintain a manageable size and beating more than 200 times a minute to get the blood where it needed to go. In doing all this, it grew strong and it grew big. Dangerously, big, sure, and unsustainable without the wall patch, but that doesn’t change the fact that my heart can and will go Incredible Hulk on your ass if it needs to. My heart is tough, determined, and a little volatile – just like me.

And the stutter…I am so happy about my stutter. To be clear, I am not talking about skipped beats. It is a double beat, where the regular signal still beats the heart in its steady rhythm, but part of the current jumps through the scar tissue and bounces around, adding an extra little beat of its own. Like when you’re walking down the sidewalk and trip over a loose brick (because you were texting, admit it), suddenly taking two steps to steady yourself where you normally would only take one. My stutter is a little “I meant to do that” flourish. A grace note. A trill. Sure, it is also potentially the start of fibrillation followed by possible death, but that is what I love about it!

At least once every day, usually several times, I feel one of these heart stutters, and every time I immediately think, “what if this is the last beat, right now?” I know it sounds morbid, but after several decades it really is just a deeply ingrained, automatic response. Sometimes, if I am having a dark day, it can start an anxiety train that thunders dangerously fast down the tracks, but most of the time it simply reminds me that life is fragile and fleeting. Every day, with almost every odd beat of my heart, I am made physically aware that this moment is a gift, that gifts should be appreciated, and that life is to be lived with purpose. Often, that is enough to get me to turn off the TV, stop eating chips, and go do something more productive. Not every time, though – there is some really good stuff on TV these days.

The point is, I would not change the circumstances of my birth for anything. My heart defect and its repercussions have made me the person I am. But in the 15 years since I left school, they have also kept me from being able to pursue my life in earnest. Until now.

Yes, I am lucky to have the support and resources to pursue a creative career; but before January 1, 2014, I was never able to work full-time toward my goals. Regardless of my financial status, I always had to maintain insurance coverage through employment. Sometimes, this meant keeping a full-time job and writing on the weekends; sometimes it meant writing full-time only for however many months I could afford the COBRA premiums (never very many), and then finding a new job; sometimes it meant taking part-time work to maintain catastrophic coverage as a minimum safety net, and foregoing regular checkups. None of these scenarios allowed me to relax enough to be very creative. But now, for the first time in my life, I have reasonably-priced health coverage that I get to keep no matter what I decide to do for a living. That is huge. That is life altering. That is liberty.

Is our health care system perfect now? Not by a long shot. There are still many flaws – leaks, stutters, quirks. It will definitely need to be monitored, and probably need more improvements down the road. But the ACA marks a major repair to a dysfunctional system; a vast improvement in its ability to sustain us; and a new hope that it will be able to serve us well for years to come. Just like my broken – but still beating – heart.

 

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