If you knew that this Thanksgiving would be the last time you were surrounded by all those you love best, would you be able to savor it?
To love at all is to be vulnerable. Love anything, and your heart will certainly be wrung and possibly broken. If you want to make sure of keeping it intact, you must give your heart to no one, not even to an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements; lock it up safe in the casket or coffin of your selfishness. But in that casket—safe, dark, motionless, airless—it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. – C.S. Lewis
As a teacher of narrative prose, I often give my students this exercise designed to teach them about writing conflict: Write a Thanksgiving dinner scene. The weird uncle will say something rude or ill-timed, someone will bring up politics, the oldest member of the family will fall asleep in their potatoes, someone will fart as the dessert is being brought out, one of the teenagers will be a violent vegetarian and choose to make a speech about animal cruelty while someone is carving the bird (that was me at 16). Putting people (especially family) across the table from one another often makes the hidden tensions in our connections tangible and all too real. Or it can be a rollicking good time. Or it can be both.
In any case, there’s a kind of electrifying buzz around family and other relationship constellations when the holiday season begins, and it’s not just about the cloying Rudolph music blaring from the supermarket speakers and ads that try to convince you that buying an organic turkey versus a Butterball will define your ethical platform as a human being.
Since my son was diagnosed with Tay-Sachs disease, the beginning of the holiday season creates in me a particular kind of sky-high thankfulness (he’s still here, he’s holding steady, I get to hold his little hand every day), and also a liquefying dread (he will not be here next year, but that’s what I thought last year, so what does anyone know?). I can hardly stand to look at the photos of him at his first Thanksgiving, dressed as a pumpkin and smiling, when he could still interact in a significant, “normal” way. And my own naïve and younger face is also striking, because I didn’t know yet that he was sick, had always been sick, and that I would outlive him.
Our tight, tough community of parents with terminally ill children has a Facebook page. It sounds mundane, terribly modern, and even a bit silly. People crack jokes and post pictures and videos. Yet there’s this: It saves the sanity of grieving parents, especially around the holidays. Nobody is terribly nostalgic about anything, because most of us have kind of given up that luxury, but many parents do post pictures of their children’s gravestones, videos from holidays past when their children were alive and laughing, and there are whole comment strands where people try to help each other with the grief that bubbles up around the holidays.
On that page people’s hearts are breaking all over the place, their sadness and gratitude and love is spilling out without apology. People post about their relationship troubles; they discuss the pros and cons of antidepressants; they offer to give away medical equipment that might serve another child after their child has died. They freely give pieces of their hearts away, often to people they have never met and never will meet. It’s like the Craigslist of grief and gratitude. Need some advice about how to make the most of each day? Here you go. Can you post your favorite picture of your child and what you loved most about them? Yes.
For me, the holiday grief blues started with Halloween: All those cute little ghouls and goblins and, at my door, a Candy Land princess, walking around with tubs of candy, talking and giggling and trick or treating. I felt like someone had fed my nervous system some kind of hop-up drug; I couldn’t keep my eyes off the kids, which made me feel creepy and stressed out and yes, heartbroken. I stood in front of the discounted Lady Gaga costumes at the party store, considering, and felt those very literal pains in my chest that have grown so familiar, that “wrung” feeling that CS Lewis describes. Thankfully, I ended up in the checkout line with a friendly drag queen that provided excellent distraction with her useful tips about how to wear my green witch wig.
Later that day I posted a question on the Tay-Sachs community Facebook page: Does anyone feel jangly and nervous, just waiting for the death to happen? I received many responses, most of which were about how the parents would trade those anticipatory feelings of dread for one more day with their child. It was the missing, they said, that was the hardest part. I began to understand that the act of remembering is actually a kind of retroactive hope. None of us will usher our children into bright futures, but we can imagine them as they were; we can decorate Christmas trees for them, get out the photo albums and cry for them, let ourselves be broken on behalf of another person. And survive it. In this land of dying children, to allow heartbreak is to allow life.
In other words: Real love has the power to hurt you in unfathomable ways, but if you are truly open to it, it will save you, even if it can’t save the people you love best in the world. These parents are such incredible teachers; they should offer a class about how to live in the world with a hole in your heart, which is what all of us will be asked to do eventually.
A month later, just weeks before Thanksgiving on election day, I listened to Obama’s victory speech at my kitchen table and wept, especially when he mentioned the girl with leukemia, and the way every parent who heard her story thought “that could be me.”
The first time Obama was elected I was driving on the 405 freeway in Los Angeles to a friend’s house in the Valley to salivate over the election coverage. As Obama won enough electoral votes to be declared the victor, a series of fists went up in cars all around me. The whole freeway—the whole world—felt lifted. What had seemed impossible was now possible. I was 34, wanting to be a mother, hoping for a lot. Ronan was born two years later.
Now, in 2012, as I listened to Obama define hope as “the stubborn insistence that despite all the evidence, something better exists if we have the courage to keep fighting,” I realized that Obama will have been the President for Ronan’s entire life. And that I have never felt more hopeful or more heartbroken. To hope for moments of happiness is a far different enterprise than the hope Obama was talking about, but it was hope nonetheless, and I’ll take it.
I’ll take this future of heartbreak, which is really the future we all face, even if we don’t know it now, the future CS Lewis articulated so beautifully and that so many of us parents will live with for the rest of our lives. And it’s OK. Seize whatever future comes, I thought, because Ronan will be with me, even after he’s gone. I’m going to pull out those photo albums and look at him in Santa suits and pumpkin costumes and cry like crazy. I’m going to remember how he wolfed down whole pieces of cheesecake, the way everyone mistook him for a girl, even when he was dressed in a truck shirt, his funny little sighs and unselfconscious farts, his enormous front teeth and the way his eyelashes made shadows on his cheeks. And then I’ll close the albums, return them to the shelf, add extra whipped cream to my pumpkin pie and watch It’s a Wonderful Life for the 400th time.
So I’d change that writing exercise I give to students. I’d ask them instead to write a holiday dinner scene with all the people they loved best, but with the added knowledge that it will be the last time everyone sat around that table together and passed around crystal bowls full of cranberry sauce and relish dishes. Write the scene knowing that everything, always, can be fractured, broken, dissolved. Write it with the knowledge that someone around that table within the next year will drop dead, disappear, disavow. Write it knowing that the only conflict worth worrying about is this one: When faced with the choice between shutting down your emotion, at the fear of risking pain, or opening up to everything and trusting that you’ll survive it, which will you choose?
If you can find the beauty in that familiar dilemma that holds within it a complicated redemption, then you can find the beauty in everything, which is the task of a writer, of course, but more importantly, it is the task of a human being.
Emily Rapp is the author of Poster Child: A Memoir (BloomsburyUSA, 2007) and The Still Point of the Turning World (forthcoming from Penguin Press, March 2013). She is professor of creative writing and literature at the Santa Fe University of Art and Design in Santa Fe, New Mexico.