By Ibby Caputo
March 29, 2012
I’m not as brave as I once was in telling my story. The more I learn about the nuances of paying for health care, and I listen to the rationale for not providing care for all citizens, the more the knot in my stomach tightens.
The nation is tethered by red tape and people don’t realize how much they’re tripping over it. Somehow I didn’t get caught up in it.
When I was sick, I remember being obsessed with the doctors’ ages. Many of them were my age — 26 — sharply dressed, with their white coats, fresh faces and brains filled with medical knowledge. Each patient, a novelty to be explored.
And then there was me. 2007. In the bed. Tethered to an IV attached to a catheter hanging out of my chest. Told that those ugly bruises running up and down my legs were a telltale symptom of leukemia.
I’d look at the Dougies — one of my pet names for the young docs — and think, you could be me. I yearned for them to realize. I wasn’t so different from them. Just yesterday I was on the top of my game, too.
The idea that I could be you, and you could be me and only by a chance of birth and circumstances is that not the case has stuck with me, especially as health care is in the forefront of the nation’s consciousness.
My care was risky and expensive. After several rounds of chemotherapy failed to put me in remission, I had a bone marrow transplant with stem cells provided by an anonymous donor. $1 million-plus later, my heart pumps the blood of a stranger, and I’m alive trying my best to contribute to the society that saved me.
I’m not sure anymore where my story fits into the whole health care thing. I just know I’m so lucky. I became deathly ill at a young age, but received some of the best care in the country and I didn’t pay for it.
Was it worth it? Maybe for me and my loved ones, but what happens when you reduce me — or any of us — down to a number? I talked with MIT economist John Gruber about this. What is the value of a human life?
He told me that economists study that very question. They put a dollar value on life. It's ugly, he said, and makes for bad cocktail-party conversation, but it's what they do and why some call economics the "dismal science."
And the dismal science says 26-year-olds are worth saving, even at a cost of $1 million.
I was living off student loans when I was diagnosed, interning at a radio station and working at a coffee shop part-time. In Massachusetts, the generous state. I qualified for Medicaid because health reform in Massachusetts made it possible for women who weren’t single mothers to qualify.
In a different state would I still have been worth saving? Probably not. Because at the time of diagnosis, I was uninsured.
I guess on this issue, I’m not a journalist. That’s what happens when you get sick. Your identity gets stripped down and you are no longer a journalist, or an economist, or a waitress or farmer, you’re just a human body with a heart you want to keep beating. At that point it’s the people you love that matter, and they go through it worse than you do, because they’re the ones who have to deal with how to care for you — including how to make sure you get quality medical treatment, and how you pay for it.
We want it all. As a nation, we want to rectify injustice but not necessarily at our own expense. Injustice? Yes, there are 49 million people in America who are scared to see a doctor because they don’t know how they’re going to pay for it.
As I tell my story, my feelings are raw. I don’t like going there. Fortunately, I am a journalist. I can step back, be curious and ask questions.
As a journalist, I will cover health care. My personal story helps me be better informed, to know what questions to ask, who to challenge and to consider opposing viewpoints.
It is a beautiful thing to have a beating heart.
Have you had your own experiences with illness and the health insurance system? How much are lives worth? Let us know in the comments or on Facebook or Twitter.
WGBH NEWS FOCUS: HEALTH CARE ON TRIAL
VIEW: UPHOLD THE MANDATE
VIEW: OVERTURN THE MANDATE
Subscribe to WGBH News Emails