The ACA Didn't Save My Life, But It DID Give Me One

In addition to providing better (or any) medical care to millions, the Affordable Care Act also freed countless people like me to leave jobs we didn’t want and finally pursue careers we always had. Three years ago this week, I started writing full time, in part by launching a blog. This was the third piece I posted on that blog:

January 28, 2014

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 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. 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 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 stories of people with 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 – independent – 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 is like a Daft Punk set list. For you bi(ology)-curious, ASD stands for “atrial septal defect,” which means I had a big hole in the wall between my left and right atria. That hole was also low enough to mess up my mitral valve, which in most hearts operates like a set of French doors 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 “regurgitates” (gross) but not at a harmful level, and scar tissue from the patched hole occasionally lets the electrical signal – which normally pumps each chamber in sequence – jump through the wall causing ventricular premature beats.

I got rhythm, but my heart stutters.

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 my doctors have marveled time and again at how healthy I am – healthier than most “normal” people. And yet, because I had surgery as a child, I have never been considered “healthy” by insurance standards. What I am, they never determined, but not “healthy.” I am among the first generation of patients to survive into adulthood after such surgeries and the insurance world has no category to define us. So, in a true act of humanity, they avoided the complexity of evaluating each case and instead labeled us all “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, and has been incredibly useful in life. I always win the scar game at 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 it can alert me to potential dates (one day I wore a T-shirt that was a little tighter than usual and three guys I’d known since elementary school suddenly asked how I got my scar. Eyes up here, boys, but thanks for noticing), and it is not-quite-vertical in its path from sternum to navel, which is a daily, maddening reminder for this obsessive-compulsive perfectionist that not everything can be exact or controlled.

As for my broken little heart itself, it pretty much defines me. First, it isn’t little - for more than two years it did everything it could to keep me alive including beating more than 200 times a minute to get the blood where it needed to go. In doing so, it grew strong and big. Dangerously big and unsustainable without the surgery, but tough and determined ― just like me. And the stutter… I love my stutter. It’s not a skipped beat but a double beat, 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 take one. My stutter is a little “I meant to do that” flourish that, sure, is also potentially the start of fibrillation, but that’s what I love about it! At least once every day I feel one of these heart stutters and am reminded that life is fragile and that this moment is a gift. Often, that is enough to get me to turn off the TV and go do something more productive, but not every time – there is some really good stuff on TV.

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 the life I wanted in earnest. Until now.

Before January 1, 2014, full-time pursuit of my chosen career was simply impossible. Regardless of my financial status, I always had to maintain insurance coverage through employment. Sometimes, this meant keeping a full-time job and writing (if I could) on the weekends; sometimes it meant writing full-time for however many months I could afford COBRA premiums (never very many) 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 the time or peace of mind 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 definitely needs to be monitored, and will 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 gamely beating – heart.