Krista Mournet

The 1970 AMC Gremlin

I’m 35 years old. I have never once smoked a cigarette. I have maybe two drinks a week. I try to eat healthily most of the time. I exercise. I shouldn’t have a heart problem. But I do.

I do, most likely, because of some faulty microscopic genetic building block that has been lurking in my DNA since the moment I was conceived. That’s a heck of a thing to wrap one’s head around.

In other words, I’m a lemon.

When I was diagnosed with ARVD, a treatable but as yet incurable disease of the right ventricle, I was disconcerted by all the doctors and nurses who kept saying I was “fortunate.” “You know,” they’d say, “many times this disease isn’t discovered until after the patient dies from it.” That’s comforting, I thought. And then I thought back to the countless times over the years when I had felt my heart beating out of control, when things could have gone either way. That’s a heck of a thing to wrap one’s head around.

Ironically, the first confirmed case of ARVD was recognized the year I was born, in 1977. Since then, there have been enormous strides in understanding and treating the disease. I have a pacemaker should I suffer a sudden “engine stall,” so to speak. There are procedures, which I have undergone, that can quiet those dangerous heart arrhythmias. And, should my old lemon of a heart start to break down completely someday, it is possible for me to get a transplant. And more research is being done every day. So yes, I am very fortunate. And not just for these reasons. Unlike a lot of people my age, I’ve had the tremendous gift of facing my own death without dying. That sort of experience tends to clarify one’s priorities.

What I’ve realized is that I tend to make the major decisions of my life based on three deep convictions; people are most important, love matters, and life is precious and fleeting. I think this has always been the case, but I’ve been even more convinced of these things recently. Correlating to these are some core beliefs that I tend to live by on my best days. You may not agree with all of them, but hey; it’s my blog. So here are some of the more important ones:

• God is real, and God is with us.
• On a deep, visceral, sub-cognitive level, the life, death and resurrection of Jesus somehow make sense.
• There is hope in the story of scripture.
• Don’t waste time giving in to fear.
• Don’t waste time nursing your anger. Acknowledge it, deal with it, and get rid of it.
• If you figure out what it is you were put here to do, do it.
• Don’t let your ambition get in the way of your relationships; if a career decision would cause damage to those you love, then it’s not the right time. People are most important.
• That said, when a good opportunity comes along at the right time, grab it. And don’t be surprised when it gets hard. That’s no reason to give up.
• Love lavishly.
• Forgive generously.
• Enjoy every bit of life that you can. You really don’t know how long you have.
• Life is beautiful, because it’s life.
• If you’re alive, you’re blessed. Be grateful.

So these are some of my priorities, in somewhat random order. Being a lemon isn’t so bad. All of us, even the Honda Civics of the world, will break down someday. And it may not be ARVD that does me in after all. But my diagnosis, as much as I would wish not to have had it, is a gift. What’s yours?

I was encouraged to find at my three month pacemaker check that all seems to be working as it should; in fact, I have so far only used it 1% of the time. This means that, as my cardiologist said when he first tested me, my heart muscle is strong and is doing the vast majority of the work itself. And I have had no episodes of ventricular tachycardia since my surgery.

Some are not so fortunate. I just came across the wrenching story of a young woman named Melanie from South Africa, who was diagnosed at 13 with ARVD, after a frightening episode at birth that then lay dormant until her teen years. I have embedded the first Youtube installment here; you can click on each successive one to view her incredible story of courage and resilience; and her family’s as well.

*A word to the squeamish or those with little ones in the room: there is some graphic operating room footage a few episodes in…

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.

One of the more disconcerting aspects of living with my new diagnosis is that it has caused me to listen to music differently. I never realized how many song lyrics talk about hearts: broken hearts, heavy hearts, happy hearts, etc. Today I heard the song “This is How a Heart Breaks” by Rob Thomas. I know that this is a metaphorical phrase. But my heart literally is broken. So for me those words take on a new significance.

This is also true for worship songs. A fairly recent favorite of mine is “I Will Rise” by Chris Tomlin. You know how it starts?

There’s a peace I’ve come to know

Though my heart and flesh may fail

There’s an anchor for my soul

I can say ‘It is Well’

A few months after I was diagnosed with ARVD, it turned out that I was singing this on a Sunday morning with our worship team. And I had to consider; did I still believe this? Was I at peace, even though my heart had failed me; though my flesh was weaker than I had realized? Could I really sing these words honestly now? Is it well with my soul, really?

I sang it, and I meant it; but not because I am perpetually at peace or even because I feel like “It is Well.” I can’t always say that. But I trust that the grave has been overcome, and that, ultimately, life will win over death somehow. So I guess I’ll keep on singing those songs, broken heart and all.