Splinters of Light (39 page)

Q. How did you get the idea for
Splinters of Light
?

A. A sensitive, appropriate answer to how I got the idea for this book would be that I had a loved one suffering from early-onset Alzheimer’s disease. An understandable answer would be that I’d watched someone struggle through it, that I’d wept at their side, that I’d held their hand as they listened to their prognosis, and that my heart was further broken when the cure wasn’t found before they died. If this were something I’d actually experienced, this book would be my way of having closure. But it isn’t.

The actual, true answer is more prosaic and much gentler. I was sitting on my couch, my feet up on the coffee table, the cat on my stomach, reading a
People
magazine that featured an article about a teenage boy who was taking care of his forty-six-year-old mother as her EOAD progressed. He managed
her medication and his schoolwork. He took care of planning for her safety and for his future.

That boy’s story—that glossy page-and-a-half write-up—was something I couldn’t let go. I’d flip over in bed in the middle of the night, wondering if he was also awake, worrying about filling out an insurance form. While I was at the grocery store, I imagined the mother getting lost in the aisles she’d been up and down a thousand times, unable to find her son’s favorite treat or even to remember what it was.

In addition to being a writer, I’m a 911 dispatcher. Every shift, I hear a dozen stories that are life altering and, very often, tragic. I let go of most of them. Occasionally, an event will shake me up, bringing me to sudden tears over the coffeepot at home, but that happens rarely. I’m able to forget most tragedies I hear. This poor memory is a required feature in dispatchers, as important as the ability to multitask and to drink cold coffee.

I couldn’t get that teenage boy and his mom out of my head, though. I began to play with ideas, slipping them around in my mind much the same way Nora does with the sea glass in her pocket. A mother and son . . . no, a daughter. I’ve always loved writing about the mother-daughter relationship. And who would raise a young woman as her mother slowly slips away? A sister, of course. A close sister. A twin.

After the idea took hold, it seemed as if every other call I took at work was about someone with dementia in some form or another. We get the calls of the wanderers, the ones who left on foot, going somewhere. (I always wondered where they thought they were going. Did they head out the door with a destination in mind, or was it just the desire to move again with long strides, crossing whole city blocks, not just hallways?) One woman with Alzheimer’s wandered a hill close
to her home for three days in summer heat, only found after a massive grid search. A rescue dog found her wristwatch; then the dog found her. She lived. Another few hours outside, she might not have made it.

She lived. She mattered.

Every day, new advances are made in Alzheimer’s treatment. And every day, the disease comes closer to us. To me. To you. Someone you love already has been or will be affected.

As this book took shape in my mind, the characters became real, and the plotline began to twist its way through my imagination like a river twists to the sea. At the same time, I was deeply aware that I had to get it right. I was entering a conversation that I needed to be part of—that we all need to be part of—and I didn’t want to do it wrong. The truth is that we are the ones responsible for raising awareness for Alzheimer’s disease, and this book is my method of doing that, of opening the dialogue.

How will you answer?

Q. Are you a twin?

A. No, I’m not a twin, but I have a younger sister close enough in age to me that there was never a time I didn’t remember her being with me. Maybe that’s why I’ve always been fascinated by twins. Or is it a universal fascination? Perhaps we all want that closeness, that ultimate representation of togetherness. We’re born alone and we die alone, and honestly, that’s an awful lot of aloneness. Coming into the world with someone sounds a lot better. I was always vaguely irritated with my mother that she hadn’t pulled that off for me (and slightly annoyed that I hadn’t made it happen, either, that I hadn’t forced my own wee zygote to split by sheer dint of will).

My mother-in-law is a twin. Jeannie and Janie still like to dress the same, and they sit close together on the sofa. Their words intertwine, their soft Texas drawl the same exact pitch. In the kitchen, they slice carrots, both of them humming tunelessly. I don’t think they’re aware of the contented noises they murmur to each other. Identical twins, they have the kind of quintessential relationship we all think of when we hear the word.

A friend of mine has a different kind of bond with her sister. While writing the book, I took her out to dinner to pick her brain about it. Over sushi, she told me about the times—long months—she didn’t speak to her sister. They were too close and pushed each other away, over and over again. There were misunderstandings, small ones, that blew up disproportionately, and enormous wounds were glossed over and covered up for much too long. My friend loves her sister more than anything else in the world. But sometimes she doesn’t like her very much.

This was far more interesting to me than the Bobbsey Twin relationship I’d always thought of when I thought of twins. Twinship didn’t only mean a built-in best friend, then (though it could include that); it also meant that you’d always only be considered half of a whole. There existed another part of yourself that you couldn’t control, one that you had no say over. You couldn’t read your twin’s mind, and maybe you wouldn’t even want to if you could.

Nora and Mariana started so far apart they couldn’t see who the other one really was. Bringing them back together was so difficult, sometimes I thought they wouldn’t make it. For the first time in my life, I was grateful not to have a twin. I was thankful my two sisters were well adjusted and strong, completely their own people.

Finally, though, Nora and Mariana made it. Now they stand together, two wholes, facing the same direction, holding hands.

Q. In your previous novel,
Pack Up the Moon
, you tackled the topic of childhood euthanasia and closed adoption. In
Splinters of Light
, you chose to write about a terrifying disease. What draws you to these darker topics?

A. There aren’t many sure things in life, are there? But I know one thing for sure. In everyone’s life, there will be times of pain, and there will be times of joy.

That’s it. That’s what we get. Placed starkly in a sentence like that, it doesn’t sound like much, and it’s easy to stick on the terrible part of it. Yeah, you’re saying that life sucks, and then we die. Thanks for that.

But that’s not what I’m saying. I believe that no matter how low life tugs us, the lifting force of hope is greater. I love the balance of it, how even in the darkest moments, we can be jolted by an unexpected belly laugh rocking through us. We shouldn’t laugh, we think. How can we possibly laugh at a time like this? Then we surrender to it and laugh harder.

That’s humanity. Human bodies are frail, but the human spirit is amazing in its strength. Oh, god. I think I just said that laughter is the best medicine. That’s not what I meant to say (although sometimes I think it’s true, as trite as the saying is).

To be quite honest, my editor said
Splinters of Light
—in its first draft—was just too sad. I’d gone so far into studying EOAD I couldn’t see a bright spot. Joy? What joy was there in such a tragic disease? What hope could possibly exist?

Then I remembered that I wasn’t writing a treatise on dementia. The only medical training I have is my emergency
medical dispatcher certificate. I know how to tell people to do CPR, how to staunch a gunshot wound, and how many aspirin to take for chest pain. No one wanted to read my book on early-onset Alzheimer’s disease. I was no authority on medicine and never would be, no matter how many books I read.

What I am an authority on is how hard people can love each other.

In my revision, I went back to that. I told the story of Nora and Mariana, twins who had drifted apart but still held the hope of being together again, always. I rewrote Ellie, a girl who loved so frantically she could barely imagine the fact that she was loved equally hard back.

My story wasn’t about a disease; it was about them.

Multicolored light started to gleam at me as I revised, the beach glass I put in their pockets winking back at me.

Hope, in my books (and in my heart), always has the last
word.

1. How are Nora and Mariana similar as the book opens? How are they different? How do their arcs change as the story unfolds?

2. Nora sleeps with Harrison for the first time before she’s diagnosed. Why do you think it took so long for them to get together, and what changes after her diagnosis?

3. What is the relationship between Mariana and Ellie like at the beginning of the book? By the last page, how has this changed?

4. This is a book about the relationships between female family members. What is the role of men in
Splinters of Light
?

5. Nora spends time writing lessons to her daughter (about lipstick, flirting, responsibility). What did she leave out? What would you want your own daughter to know?

6. What do you think Mariana believes most about motherhood?

7. Ellie wants to, and does, have sex during the course of the book. How is this part of growing up for her? How much does it mean to her?

8. At Nora’s darkest moment, she almost loses her sister. What does Mariana’s revelation to her about their relationship mean to how the sisters will work together in the future?

9. Do you think Ellie should be tested for the disease her mother has?

10. Beach glass is a central metaphor in
Splinters of Light
. Is there something in your own house that you could consider a similar metaphor?

Courtesy of Bethany Herron,
2014

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