Conditions of the Heart, or why we have to tell THAT story...

Note: This isn't entirely, 100% a post about books or writing, but more about highly personal stuff that is related to writing, so if you'd rather just read about book news n' stuff, (and that's totally understandable) quit reading now. To my subscribers, I'm sorry; I don't know how to make this post-only.


I was debating whether to write this or not and found out that I really can't get any writing done on All In until I do. It's just on my mind, this topic, and won't get out until I purge the only way I know how.

***SPOILER FOR FULL TILT***

Full Tilt is a book about a guy with a very serious heart condition, one that eventually proves fatal. As stated elsewhere, this story wasn't on the agenda. I had other books lined up, but FT was stubborn and muscled its way in and so I wrote it. The upshot or "message" I sought to convey was one of hope and resilience in the face of death, and the enduring power of love that everyone deserves no matter what stage of life they are in.

The bones and structure of FT are extensive research on heart conditions and transplant rejection, while the blood and guts of it is the message to live life fully, and love completely. Full tilt, no stops.

I hit publish, and began work on the sequel, in which the message here is that love, in infinite quantities, lives in all of us, and should be celebrated, not tucked away or neglected because one has loved and lost before. And this was all well and good, and all safely contained in a fictional Las Vegas, and soon to be fictional New Orleans.

Then five nights ago, my 8 year old daughter complained of a rapid heart rate. I could see it, jumping in the hollow of her throat, and feel it in the pounding beneath my hand when I touched her chest.

We had just moved across town, and Stanford Lucille Packard Children's Hospital was now a two minute drive away. I frantically drove her to the ER while the hubs stayed home with our 5 yo. My eldest was rushed in, set up, monitors attached, and the screen showed a heart rate that was in the 220-230 beats per minute (bpm), with no signs of slowing. All the while, she was a trooper; a little scared, a little light-headed, but still able to walk, talk, etc.

The AMAZING doctors and nursing staff at Stanford tried all kinds of tricks to stimulate the vagal nerve and bring her pulse down: having her blow into a tube, cold icepacks on the face, etc, and nothing worked. That left the only option of taking a medicine via IV that 'restarts' the heart rhythm. As a precaution, defibrillators were attached to her chest and back, and a cardiac crash team gathered around the bed in the event that the medicine did more than just slow her heart rate, if you catch my meaning.

Fortunately, the medicine did what it needed to do, and her pulse came down to the 120 area, which is normal for a child her age and size. The cardiologist took a look at her readings and confirmed my daughter has a rare heart condition called Wolff-Parkinson-White syndrome.

WPW  <---link about the syndrome for the curious

This condition is not as dangerous as others but it comes with its own set of complications, risks, and issues. We were released that night around 3 am with a prescription for beta blockers and and appt. with docs on Monday to assess the best course of action going forward.

So here I am, having written about a guy with a heart condition in the blithely detached manner by which we can write about all kinds of issues that we have no personal experience with. Because that's what we do. We make shit up. But maybe, just maybe, certain topics--topics that feel like we have no say in writing about--feel that way because deep down we needed to hear the lessons of those stories out loud.

I think I did.

If there is some driving force or that "everything happens for a reason" then I guess I can say it was meant to be that I wrote FT because its message is no longer merely an ideal I held close and believed in, but now my waking reality.

I treat everyday with my daughter as something special. She slept in our bed for the first two nights after the hospital, and we fell asleep holding hands, with me listening to her breathe. We're closer now. I don't get frustrated or impatient over little things anymore. I flow affection toward her in waves, I tell her--and her little sister, and my husband--that I love them whenever the urge to say it comes to mind. (And that's a lot.) We don't live every day in fear--she's under the best care and not in immediate danger anyway--we strive to live in joy.

We moved, a week prior to all this, from a small apartment in a crappy part of town with a train in the backyard, to a beautiful, big condo on gorgeous grounds filled with greenery and flowers, and a pool. For the first two days, I walked around our new place thinking I'd take post pics of our new dining room (something I'd never had before) or the view outside every window, or a shot of my very own office that I'm sitting in right now.

Now, while I'm still appreciative of where we are now, and how hard we worked to get here, it pales in comparison to my daughter's health. What the hell is a new dining room table to that?

They say that art imitates life. In my case, life imitated art. But I'm not sure I believe in coincidences. I think writers (and all other artists) are speaking with more than just brain synapses and keyboard strokes. The universe told me to put my money where my mouth is. So I did. I will.

Love,
ES