He felt now that he was not simply close to her, but that he did not know where he ended and she began. ~Leo Tolstoy

Friday, July 29, 2016

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.


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.


Sunday, July 10, 2016

What's up with that hashtag?

Several people have wondered/asked about/were annoyed or confused with the #nocancer hashtag I have affixed to the synopsis of Full Tilt. No, I'm not going to take it down, as I put it there for a specific reason but I will explain that reason to hopefully clear up any of the above confusion or upset.

Firstly, a (hopefully unnecessary) disclaimer: It's not a knock on other "cancer books". There are many powerful books written where one (or more) of the main protagonists are stricken with the disease. I have read the first three that probably come to mind if you're a romance/YA reader, and have loved all three. I didn't put the #nocancer in there to thumb my nose at any other book that might tackle such a subject. That should go without saying but I'm saying it anyway.

That's NOT why that hashtag is there.
Here's why it IS there.

Cancer is an epidemic. It may not sweep through cities like a plague but it's prolific enough that most of us know at least one person who has been touched by it, directly or indirectly, up close and personal or anecdotally, a family member or friend, or friend of a friend... It's fucking awful. It takes many insidious shapes and forms, and the warriors who battle it are brave and heroic, and numerous. Because it is so endemic, I didn't want to write about it. I wrote Full Tilt as an homage to the people who love and are loved until their last breath, and I hoped that because Jonah's illness is something a little more rare, a little more removed from the norm, it would help to give a cushion for readers who might already be dealing with life and death scenarios. My intent was to tell a love story that says, "Any one of us, no matter where (or when) we are in life, deserve love" and to do it honestly. To not shy away from grief or the terrible reality that sometimes the illness cannot be defeated, but to at the very least make that illness a sort of a stranger instead of the common phantom cancer seems to be.

There's another hashtag in my synopsis: #tearjerker

This is there to dispel the notion that because this book has #nocancer it is does not deal with death. It does. It is both a book that has no cancer, but is also a tearjerker and I had hoped--maybe naively--that this would indicate to readers what kind of a story they were getting in to. Maybe it didn't work. Maybe adding #nocancer somehow negated the effects of #tearjerker? I don't know, but I do know the number of people who have told me they were glad this book was cancer-free despite the ending outnumbers those who are upset about the hashtag. However, as I'd prefer that NO ONE be upset over a hashtag, I'm offering this explanation.

And lastly, I did not set out to write a book where someone dies specifically NOT from cancer. It was not premeditated; the hashtag and everything you just read was born out of the fact that Jonah had--and had always had--a heart condition. The story comes first. The ramifications come second. So while everything I just explained about why #nocancer is true, it also comes AFTER the fact. The story comes first. I'm always going to tell the story I need to tell. The hashtags were my effort to NOT dupe the reader into embarking on a journey that might be too difficult straight out the gate. Maybe the message failed some people but my intentions were good, I promise.