Broken Hearted

What a weird fucking life we all live.

I’m an actor, a writer, a dad, a husband, a guy who likes sports, and a human person who watches youtube clips of serialized medical dramas to help fall asleep. But amidst those day-to-day behaviors, it feels like I’ve really spent every day since I was 14 alternating between wilting and rising in the wake of trauma. My mom’s early death from heart disease has warped the very way my brain processes information, and despite a lot of time passing, I’m still finding new ways in which it can hold me hostage.

For a long time, I pretty strongly considered the fact that my supremely bad luck was the result of a strike of lightning. A lottery ticket. A cosmic and random “fuck you” from the very universe that also deigned to conjure my spontaneous consciousness in the first place. But what if it’s so much worse than that? What if the heart defect that ended my mother’s life was genetic? What if the thing that felt so random– so unfocused–  was actually stalking my entire bloodline?

What if I have it? But really, what if my children have it? That’s the question I was recently faced with.

Dilated cardiomyopathy was not something I ever wanted to have a lot of knowledge about. It’s a weird word followed by a long word, and generally when you’re talking about medical problems you want things to not be weird or long. I guess cancer is pretty short, and not that weird, but maybe that’s the exception that proves the rule. Regardless of my general disinterest in dilated cardiomyopathy, though, it has certainly made itself known in my life. My mom died of it when I was a kid, and it was recently linked to a gene that can be found in pretty much any at-home test.

When the emails and texts started flying around between people my mom was related to (a very weird way to say “family” that for some reason I can’t bring myself to edit out), it started as much more of a cautionary tale than any real possibility. Who knows exactly how this thing works? What if it’s just coincidence? Can we even be sure she had the gene? But like any curse, it seemed to continue to turn up, slowly forcing most of my family to face it in one way or another.

As to how I’m going to face it is easy: I have the gene.

While certain google searches will tell you that it doesn’t always lead to early heart failure, the multiple cardiologists I’ve now seen have painted a pretty clear picture. The words “shorter life expectancy” aren’t ones you love hearing. This gene certainly isn’t a death sentence, but it follows models in your family. And the models in my family are a lot less “New York Fashion Week” and a lot more “hospital gowns and blood pressure medication.” It seems like, barring some sort of miracle, I will eventually get the same heart disease that killed my mother barely after her 50th birthday. Dilated Cardiomyopathy. This is obviously enough to add up to some sleepless nights, some tearful conversations with my wife, and some real attention-getting texts to my friends… but it’s not even close to the worst of it.

My girls had a 50/50 shot of the same fate. We ran the tests pretty much immediately. And in true 50/50 fashion, my oldest dodged the bullet, but my little twin wasn’t so lucky.

That curse– that horrible figure lurking in the shadow and creeping towards the very heart I quite literally got from my mother– it might have its sights set farther down the family tree. By helping to create the two things I love more than I can stand to even think about, I’ve given them a coin flip at a normal life. If they got my heart, they got screwed.

There is nothing I can write in a blog that can possibly convey how I feel about my daughters. There is no amount of joy or love I could speak to that could mean anything compared to the feeling I get when they smile. There is no good thing in my life that has ever mattered as much as one hug, one giggle, one hand pressed tightly in mine while we cross the street. Quite simply, I am my mother’s son in more ways than one. Her only dream was to be a mother. I had a lot more dreams; different dreams. But it turns out that none of them mattered once I became a dad. If the two of them asked me to never write another word or act in another scene, it’d be the easiest decision I’ve ever made.

So the sleepless nights aren’t my own. They belong to me and Stevie. All I can do is google and think. All I can do is prepare for a future that is very likely coming, though no one is quite sure when. And one that is even less certain about how bad it will be.

I do try to focus on the large amount of positives. I guess now is as good a time as any to mention that dilated cardiomyopathy is not the killer it was when my mom was diagnosed. We caught it exceptionally late in her, and there were few things that could really help. My outlook is a lot more positive, with medication and preparation that is in an entirely different universe than what was available in the late 90’s. And chances are my youngest will soar past my expectations, even if the gene mutation does poke through. Medicine is getting better by the minute, gene therapy is becoming a reality, and Artificial Intelligence is fast increasing the defenses we have against heart failure. All of these questions might be answered, and answered well, before the effects even rear their heads in her.

But I really won’t know until it’s a reality. The curse that destroyed my life could be hiding in her absolutely perfect little heart.

For now, my life changes a bit in the short term, with added cardiologist appointments, early medicine, and a bucket list of physically challenging things that has drastically moved forward in time. But for now, I’ll keep doing one of the only things that’s made me truly happy in my entire adult life.

Hugging the two girls who made me a dad.