Surprisingly, the first thing I thought of when they told me that my heart was broken was Niles Crane.
For those not well versed in mid-90s television situation comedies, Niles is the younger brother of Frasier Crane, a neurotic, obsessive hyper-intellectual who one could describe as a “lovable dandy,” if one were inclined to use such terms. In one particular episode, due to a series of extremely unlikely coincidences that occur to and around him, Niles becomes convinced that a minor pain is actually referred pain caused by a serious heart condition. Eventually, our paranoid protagonist convinces himself that he should seek medical attention to finally refute his extraordinarily unlikely assumption. Even as he is apologizing for wasting the doctor’s time with such obvious nonsense, it is predictably revealed that Niles is facing an immediate medical crisis after all.
This was not at all dissimilar to how I felt when I asked my general practitioner to refer me for some routine heart-diagnostics tests, only to discover that I have a serious genetic defect and will likely undergo open-heart surgery this summer.
I have a bicuspid aortic valve with moderate regurgitation which has caused a 4.4 cm ascending thoracic aortic aneurysm. In normal person terms, this means that the doorway from my heart to my aorta doesn’t close properly, and so as a result the hall just beyond that doorway bulges out as if Neo had just discovered that he is The One inside of it. As you may or may not suspect, “bulgy heart bits” is not generally considered a desirable trait; worse still, it’s something that will only ever get worse. Put bluntly, my heart is blowing a very troublesome balloon out of my aorta, and eventually the most critical part of my circulatory system will do what every balloon does when you fill it with too much air (or blood).
If I do nothing, eventually this will kill me.
What is surprising to me is how easy it was and even is now to absorb this information. I really would have expected far more personal histrionics upon realizing that a surgeon was going to crack me open like an oyster and shut down my heart for a few hours while he pokes it with metal things. Instead, it was such a departure from what I had expected that I have been more or less befuddled by it. It feels a bit like walking in for a flu shot and having someone fire a bazooka at you instead. It’ s just too big to process immediately.
You have to understand that I’ve never gone to the doctor really expecting anything to be meaningfully wrong—and until now I’ve batted 1.000. The worst thing that’s ever happened to me is discovering the hard way that I am significantly allergic to a number of particularly foul-tempered flying insects. Even that has always felt more like an inconvenience than a serious medical condition. Other than that, I have to be openly blackmailed into going to the doctor for anything less than major trauma.
Now, I’m coming to terms with the fact that echo cardiograms, medication management, CT scans and all manner of unpleasant prodding are going to be a fundamental part of the rest of my life. And even that assumption is built from the foundation that everything will go perfectly for the doctors who will be rooting around in my exposed chest cavity, which still seems like a pretty strange assumption to be putting into the ‘given’ column.
I suppose if there were a reasonable chance that I might get better, or even that there was a better procedure on the horizon, I would consider waiting. But there isn’t, and there’s very little appeal in the thought of walking around for a few years waiting for my heart to spontaneously burst open like a pizza roll left too long in the microwave.
What’s been of particular interest to me has been the wide variety of reactions from friends and family. In truth, it’s obvious that my “condition” is affecting some of those closest to me far more at this point that it seems to be impacting me. Never will you so quickly see ordinary people turn into militant optimists than when you divulge a life-threatening condition. Following a brief moment of shock, most of the people I’ve told have pulled down the shades and put on a tone that says, “I don’t even know why you’ve mentioned this, because it is so obviously going to be completely OK—so OK that other things that are just-kinda-basically-OK are going to be jealous.”
There’s something very hard about seeing people be so scared of what’s happening to you that they can’t even face the prospect of worrying openly about it. I know how they feel, because even if I completely overcome this thing, it’s likely that one or both of my kids will have to go down this same road. I really haven’t even allowed myself to start thinking about that yet.
So, yes, I guess it’s affecting me as well. I suppose if you read the paragraphs above, you’ll see me doing basically the same thing those around me have been doing. Thing is, when it comes to something like open-heart surgery, worry is a black hole: You have to stay as far from the center of it as possible, because you know there is an invisible event horizon, and if you cross it you’ll plunge hopelessly into inescapable panic. I mean, when it comes right down to it, how do you deal with the fact that someone is going to stop your heart for a while?
Maybe you know, but I don’t.
So, I will be an outside observer to what is happening to me, for now at least. I will look at it clinically, wash myself in the numbers (thousands of cases per year, a 1% mortality rate, roughly 5% chance of serious, life-changing complications, a day in the ICU, a week in the hospital, a month of suffocating exhaustion, a pill a day to keep my blood pressure in check, 3 months to the next CT, a lifetime of blood thinners). I will create something in my mind that I can examine empirically instead of in terms of uncertain fears and an infinity of what-ifs.
That works—most of the time. It’s no surprise that late at night, as I’m drifting into that living-death of sleep and I hear the echo of my heart beat in the springs and coils of my bed, when the whisper of blood is loud in my ears, I see the knife cut into my chest. I feel the break in my rib-cage. I envision the spinning machinery of the heart-lung machine that cycles my blood, and I see my exposed and unplugged heart suddenly stop.
And I listen to the sound of the beat in the coils. And I wait to make sure the rhythm of my life doesn’t stop.