Monday, May 10, 2010

Defibrillator, Death, and Denial

For three hours, the grasshopper-like chirps call out from the defibrillator. Three hours.

This entire time, I continue to write sections of my memoir, Drop Dead Life, trying to pretend the beeping isn’t there.

If the beeping is there, that means we really own a defibrillator. That means I actually need to be ready to pull out the child-sized paddles and jump-start my daughters’ hearts.

It’s been a rough few weeks. We just visited the pediatric cardiologist at the Oakland Children’s Hospital and this was the first year in which my new husband, Evan, and I were completely honest with Tatiana, 8, and Keira, 6, about their chances of inheriting their birth daddy’s genetic heart condition.

Fifty percent. Each of the girls has a fifty percent chance of getting Brugada’s Syndrome.

“Mommy,” Tatiana said, as she wiggled on the crinkly exam table paper, “So, basically, we’re doing all these tests to make sure we don’t die?”

My late husband, Erik, died at 29 from a problem with the electrophysiology in his heart. I was seven months pregnant with Keira on that Easter Sunday when Erik’s heart flicked off like a switch.

It was unimaginable. All of it.

I did every type of therapy possible: Endless hours of Post Traumatic Stress therapy. Journaling. Eye Movement Desensitization and Reprocessing. Vigorous exercise. Hypnotherapy. Chakra work.

I figured the only way to get over Erik's death was to go straight through it, as painful as every step would be, and that the more time I spent healing, the sooner I would feel capable of being a good mother again, and eventually, a good partner to someone else.

And now, I do feel like I’m finally a good mother again. And a good wife. My life is happy, full.

But the beeping continues.

Tatiana and Keira’s cardiologist said, “In case there’s an episode, I’d keep the defibrillator in the house. Take it on vacations.”

So Evan ordered it immediately.  

Then, as soon as the box arrived, he read the manual, inspected each part, and said, “You ready to learn how this things works?”

“No.” I continued changing our new baby’s diaper.

“Does this mean you’re not ready now, or that you’re never going to be ready for me to show you?”

“I’m never going to be ready, but I know I have to be. It’s just that I can’t do it right now.”

“Alright, well we have to do it soon.”

I know I have to face it.

The defibrillator is the only thing that could have saved Erik, if we had been aware of his heart condition. If we had known that he would slide down our kitchen counter and drop dead on the cold, white-tiled floor, we would have owned one.

“I can’t explain this,” I said to Evan, “but every time we talk about the defibrillator, it’s like I can’t even breathe. I can’t go there.”

Evan gets it. He knows me.

He knows that I will always be affected by Erik’s death. He knows I will constantly fear the same thing happening to one of our kids, or even him.

What Evan doesn’t know is that he left the defibrillator on when he took everyone else out to breakfast so I could have some time to write.

And now, I must force myself to go downstairs and figure out how to stop the beeping.

5 comments:

  1. we're in the same boat, almost EXACTLY. each of our kids has a 50% chance of inheriting their dad's Arrythmogenic Right Ventricular Cariomyopathy ....it killed him in his sleep. and so we just wait ..........and see...........and pray to God that they'll beat the odds.

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  2. What a terrifying thing to live with. I hope figuring out how to turn that machine off was in some way cathartic. Imagine how much power you will gain when you do eventually learn to use it.

    Really nice post.

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  3. Wow, Hyla, I had no idea about all of this.... Great post....and I pray that you never need to use that machine! You have such a way with words, I am always moved by everything you write. Thank you for sharing! Love you my friend!!! XOXO

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  4. I'm not exactly sure what killed my Nelson. The autopsy was inconclusive. One of my doctors, who used to be a pathologist, told me that given the symptoms he'd been having in the month or so before his death (i.e. dizziness and feeling unwell), and the inconclusive autopsy, it was probably an arrhythmia. And his mother has a pacemaker.

    We never got to get married. He was planning to propose in December. He died last November. It's been six months now.

    It's hard.

    I'm glad you have the defibrillator. I hope you never have to use it. ((((HUGS)))

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  5. Wow, I just relived my husbands death. He had hypertrophic cardio myopathy and our son was 11 months old and I was 22 when he died. My son gets echocardiograms every year. Thanks for sharing your story.
    Steph

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