On October 3rd I went to see a new doctor. We moved to our new-ish home a little over a year ago, and I’d been putting it off. As I went through the usual narrative with him–family history, allergies, number of alcoholic drinks I consume in a week, that sort of stuff–the doctor asked very nonchalantly, “Have you ever had palpitations?”
Well, now that he mentioned it, I had noticed something…no big deal, just a bit of a racing heartbeat when I exercised. I hadn’t even thought about it, I’d gotten so used to it. As he began furiously scribbling notes in my chart, it dawned on me that my life was going to get a bit more inconvenient. I was scheduled for a battery of tests, all of which seemed to take me away from the really important things; teaching and research. So I sighed and accepted it. A week went by.
On October 10th, I got a call from my doctor. The cardiologist had read my chart and wanted to see me–today. I was teaching that day. So right after I finished class, I rushed to meet him. After the usual handshake and hello, his first words to me were; “You’re a mess. And I don’t know why.”
And just like that I was carried away to another world like Enoch or Ezekiel. Except this world wasn’t full of angelic beings and bejeweled thrones. It was full of beige walls with hard right angles; wires and beeping noises and needles in my arm; the smells of sterilized surfaces and the crunch of plastic pillows. My husband, the only connection to my former world, stayed close by.
In that world I saw signs and wonders; the chambers and vessels of my own beating heart, and the sound of my blood as it coursed through my body. I followed along powerless, led by my cardiologist through the dark corridors of more and more tests and finally, diagnosis; arrhythmogenic right ventricular dysplasia (ARVD). It’s a rare heart disease that afflicts young people who are otherwise healthy. It causes the right ventricle to turn, over time, into fat and scar tissue, causing heart arrythmias like the ones I had been not noticing for years. It could have killed me several times over by now.
So while I lay on an operating table, my cardiologist fixed whatever arrhythmia he could surgically, then he implanted a defibrillator just a bit below my left collarbone. I’ll have this for the rest of my life. It and medicine will keep my heart going from now on. For how long, I don’t know. But certainly longer than it would have on its own.
Dr. John Byron recently mentioned a book in his blog called In the Valley of the Shadow, written by James L. Kugel, a highly regarded Hebrew Bible scholar who also happens to have battled an aggressive cancer and, like Jacob who fought the angel, was changed forever in the process. He summed up his experience after diagnosis this way;
“…you don’t stop being the person you were before the diagnosis–in fact, you end up doing a lot of the things you used to do–but you are not even remotely the same.”
On the morning of the 13th day after I walked into my new doctor’s office, I sat waiting to leave the hospital. My room had been on the fourth floor of Grant Medical Center in Columbus, OH. On that floor, just down the hall, was a waiting room filled with windows that reached from floor to ceiling, offering a beautiful panoramic view of the streets and skyline. It happened to be the morning of the Columbus Marathon. And as I looked down, I saw the runners make their way just past the hospital and down the street. These weren’t the really good runners, they had already gone. These were the joggers, the walkers, the stragglers. In one moment cheers erupted from a group of supporters that was so loud I could hear every word four floors up behind tons of glass and concrete. Then, not five minutes later, I watched as a gurney cut through the crowd, occupied by a man in an oxygen mask on the way to the E.R. Everything seemed so random.
Kugel talks in his book about “smallness;” about these rare, unrequested, untimely reminders of just how little and vulnerable we are, really. As he says, it’s like the background music stops; “the music of infinite time and possibilities; and now suddenly it [is] gone, replaced by nothing..there you are, one little person, sitting in the late summer sun, with only a few things left to do.”
I’ve long been acquainted, even at my age, with loss, suffering, pain, death. But it’s a different thing when it’s my own body that’s unwell. Don’t get me wrong, I’m grateful, and yet…
I am glad to be alive. But still…I’ll never be well again; really well. I’m always going to need help. The scar is getting better, and my strength is coming back. I’m alive, thank God. My son has his mommy for a while longer, hopefully a long while. But that thing will always be there, just a bit below my left collarbone. There it is. It will take time to get used to that.
Of all the deeply profound, blessedly unsentimental things Kugel says in his book, there is one that perhaps gives me the most comfort. And he didn’t even say it; it’s a quote from Ludwig Wittgenstein; “To believe in God means to see that the facts of the world are not the end of the matter.”
Thanks to encouragement from some of my loyal readers, I’ve decided to let my blog meander as my life does; I will at times write about my experiences with ARVD, at times I’ll focus on my research, at times perhaps family and faith. As things strike me, I’ll share them here. We’ll try that for a while and see how it goes.
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