“Put Simply: Our Healthcare Problem is Our Deficit Problem” —Barack Obama, September 9, 2009

There I was again, watching him, and crying in front of the TV. Not like I was when Obama was sworn in, not out of feelings of pride that we finally have someone in the White House who seems to be able to really see things clearly. The tears started with the most benign of the evening’s statements: Our healthcare problem is our deficit problem. I was emotional because that (overly) simple statement sums up my life right now.

Call me naïve, but first let me tell you a horrible little story about this “Healthcare Issue” and what I sometimes call the "$1435 Incident."

Sometimes I want to tell it like a joke. It might go something like this: A very sick man walks into a pharmacy and waits in line to pick up a shiny new medication that his doctor has prescribed. As the cashier rings him up, the numbers $1,435 appear in green digits across the screen, which the cashier believes to be a mistake, so he voids the transaction and rings the purchase up again. When the same numbers appear, he pulls the man to the side, away from the line of people waiting behind him and says, "And that’s only for two weeks worth of this stuff," to which the sick man replies, "                 ."

That’s just it. There is no punchline. I get to that part and I realize this could never be a joke. It firmly holds its place in the nightmare category. And it’s been happening to us for the last nine years. In fact, at the risk of sounding hyperbolic, it’s nearly wrecked our lives. The sad thing is my self-employed husband was, and still is, insured. Only his insurance provider deemed this new prescription, his only real choice at the time, as a thing they would not cover. And even though we both had full-time jobs, there was no way that we could afford to cover these costs.

I fantasized about moving to Canada or to Europe. I fantasized about Michael Moore escorting us to the insurance company’s office to give them a piece of our mind, but I knew that wasn’t going to happen. I fantasized about a miracle cure, a miracle drug. But one had already arrived, and had come and gone before our very eyes. My husband took it for several years, and then one day his body developed a resistance to it. Just like that, our years of relative ease and wishful thinking were suddenly over. His immune system, without any notice, had begun attacking itself again.

Anyway, the $1,435 incident wasn’t even the disturbing part, it was the all the things that came before and after that. The $1,435 incident was just like a very big ludicrous comma punctuating a rather large and messy sentence that I will now condense for the sake of clarity: Around the age of 30, my husband was diagnosed with Crohn’s Disease, a chronic illness that has caused nearly everything that we once knew as our lives, and our relationship, and sometimes even our sanity, to crumble.

I know we are not alone on this one. It was as if our life had become a pre-existing condition.

Very soon after we’d gotten married, we were offered a name to this disease. If you look closely, you can see it in our wedding pictures. My husband’s face is eerily thin and lacking in color. Because he’d been dealing with a more mild version of the symptoms for some time, he spent the first few post-diagnosis years in denial, seeking out opinions from every naturopathic doctor he could find. Then he lost more weight, and things took a turn for the worse. So we found a specialist, who put him on Prenidsone, an evil steroid that produces horrible mood swings and general irritability, and a miracle medication that his insurance actually covered  (because, we learned later, he had to go into an infusion center to have it administered).

When that eventually failed and it came time to switch medications, the insurance company backed out, saying that they wouldn’t cover something that he injected himself at home. After trying for several months to eat the costs, after having to quit his job because he was so sick he couldn’t work a full day, after realizing that we were sunk financially, we made the decision to leave our house and the expensive city we lived in. After all, we had a two year old and we needed to start thinking about how this was affecting her.

My husband got on a patient assistance program, which helped until that medication wasn’t working anymore. Now he’s on another trial drug, which seems to be working, and his insurance covers it because, you gotta love this part, a nurse comes to the house to administer it to him. For now, things are OK. But I’ve learned over and over again that this too might be temporary.

In Buddhism they talk a lot about the impermanence of our lives and about groundlessness. In my family, our lives have been groundless for many years now, and to some extent, I have gotten used to this sensation. It helps me to remember that even when I think things are stable, they might not be. I know that sounds crazy, but it’s the only thing I have to go on because I watched everything that I had counted on change quickly and dramatically.

I watched a disease tear our family into pieces of our former selves. I watched it destroy a savings account, and rip away the hope from my husband’s eyes. I watched our own deficit grow until we were just a few steps away from bankruptcy. I watched as our family and friends couldn't figure out how to respond to this situation, all of us caught up in a whirlwind of denial, pity, resentment, rage and sometimes, out of exhaustion, even indifference.

So last night, as I watched Obama address this issue, as I listened to my daughter screaming in the other room because she couldn’t watch The Aristocats for the 13^th time, a daughter who still really doesn’t understand that her father has a chronic illness that has affected every fiber of our being, every decision we’ve made in the last five years that she's been alive, and after I pleaded with my husband to watch this joint session address with me, though he is too close to the issue to really be able to tolerate a speech (replete with booing Republicans) about it, I sat in silence. I sat, and I cried, and then I let myself feel a micro-dot of hope, no matter how naïve that may seem.

I had to. I just had to. What else can I do? Healthcare reform can’t really help our family at this point, but it could help prevent this from happening to someone else.