Welcome to Fast Five: short interviews with my favorite writers. Life may be short but who doesn't have time for five questions?
In the story, Lillie Claire Glidden is unraveling. She knows she’s in trouble when she finds her wallet and keys deep in the refrigerator. Not even her favorite red wine can dull the pain of the dreaded diagnosis: Alzheimer’s.
Told from Lillie Claire’s perspective, All the Dancing Birds offers beautiful and terrifying insight into the secret mind of those touched — and ultimately changed — by the mystery of Alzheimer’s disease.
I’m intrigued with the genesis of this novel: your brain tumor. Can you give us a bit of backstory?
I’m a brain tumor survivor of eighteen years. I still remember how my hands trembled in my lap as I received the initial kick-in-the-gut diagnosis that I had a tumor, a little larger than a golf ball, squatting deep and ruinous inside my brain. I was then given the unpleasant task to prepare for a number of terrifying outcomes, each one more frightening than the one before. In the world of brain tumors, full recovery is generally the last item on a long list of other more probable and very unkind possibilities. Nevertheless, with a gifted surgeon, a great deal of love and support and the luck to have inherited my grandmother’s stubborn Irish streak, I was given the gift of a shiny new life.
During the months following surgery, I taught myself to walk again, to talk again. To live again.
It seemed only natural after surviving a brain tumor, that I would develop a keen interest in other brain diseases as well. As time went on, I spent many years with family members and friends who suffered from Alzheimer’s disease. After my own experience as a brain tumor patient, it dawned on me one day—like lightning in a bottle—that I retained the ability to think, even when it wasn’t clear to anyone else. I compared my early days following brain surgery, when I was unable to intelligently communicate, to the latter days of my loved ones with Alzheimer’s, who were equally unable to communicate. In recalling how difficult it was to locate and form words (a condition called, aphasia), it occurred to me that even in my darkest times, when my reasoning was skewed or my thoughts were slow in forming, I nevertheless retained the ability to think—however narrow those thoughts might have been. I retained a lively imagination and, even when I felt jumbled with medication or all those blind alleys I wandered through within the quiet of my mind, I still never stopped thinking. Similarly, I’ve watched dementia patients, silent and sometimes unapproachable, light up whenever someone might simply stop, take their hand, look into their face, and croon a soft hello.
It’s the notion that thought does not cease—regardless the circumstance—that I wanted to fictionalize.
I believe insight and knowledge is as possible through fiction as it is through clinical and nonfiction studies, that fiction teaches and illuminates and clarifies in different ways. A story can surprise and educate in creative ways; it can let readers explore difficult subjects through imagination and storytelling.
Statistics can be so clinical. You managed to turn dramatic data (5.5 million people in the U.S. with Alzheimer’s!) into a personal story that is both moving and illuminating. How were you able to capture the inner life of this disease of deterioration?
Alzheimer’s disease has been described as a rabbit hole into which entire families fall but, unlike Alice, there is no return to normal.
There is no single look to Alzheimer’s, just as there is no particular demographic that is either susceptible or immune. For those with Alzheimer’s, every place from which to be productive and giving, to be restored, to be welcomed, to be themselves, to give physical expression to their changing personalities, is removed. These are, quite simply, people slowly deprived of their unique humanity.
Although I allowed Lillie Claire’s thoughts to incorporate intelligent and robust language until the end (obviously, I took a great deal of literary license), she wanted it that way. Characters are like that for writers—they can be pushy! Lillie Claire wanted her story to be written as if she were fully able to speak into to the heart of each reader. She wanted everyone to know that even when she was silent, or had thoughts that didn’t exactly capture reality, or when she appeared not to have thoughts at all, she was still able to feel pain and joy. She was always able to think something. Researchers and caregivers confirm that even in the final days of Alzheimer’s, there is still a thread of connection to thought and feelings. Discomfort can be felt. Loneliness is an emotion still available to a dying patient, even when that person is otherwise silent on the issue. If All the Dancing Birds is able to communicate the concept that we remain thinking individuals until the end, then I’ve done something good to help promote human communication when all evidence points otherwise.
All the Dancing Birds is the story of one woman’s long and wrenching struggle with Alzheimer’s, but it also strikes me as a novel about empathy. Each of the main characters – son, daughter, caregiver, even Lillie Claire herself – respond differently to Lillie Claire’s declining health. Was this an intentional path while writing the book?
I’m most proud to have taken a task that was said to be impossible and create a work of imagination, illumination and creativity. Finding the interior of Alzheimer’s disease was more than imparting clinical information—it was like grabbing hold of a sticky bee’s nest and coming away without getting stung. Giving readers the information that thought continues even when words are gone could only have been told by my spunky Lillie Claire who allowed me to pile every uncomfortable aspect of Alzheimer’s on her small shoulders. She never whimpered that I’d given her too much, and for that, I’m proud of her and proud of me.
When I was diagnosed with a brain tumor, I quickly found that there were as many different responses to me as there were stars in the sky. Each of my children found the path that was most comfortable for them to confront a frightening diagnosis given their mother. I called out the memory of my children as I allowed Bryan and Allison to form their responses. I also gave Lillie Claire the gift of her own response to her failing mind and crumbling body. In their own way, even John Milton the Cat and the dear little patio birds responded to Lillie Claire’s progressive changes. As odd as it might sound, as the author, I even gave myself an opportunity to change along with Lillie Claire.
I love that your main character is a writer and poet. Were you, like Lillie Claire, shaped by literature?
When I was just four, I became sick with Rheumatic Fever. At the time, treatment was paired with strict bed rest in hope that a common outcome of heart valve damage could be avoided. My mother sat with me every day for six months, teaching me letters and words and a love for literature. Not content with “See Spot Run,” my mother encouraged me to read large and impressive stories. So, at four and a half, I was reading everything I could find. We wound our way through Grimm’s Fairy Tales and Br’er Rabbit, Alice in Wonderland and the Little House books. We read Nancy Drew. We read The Golden Book of Poetry.
Books have always been how I link myself to this often confusing world. Words give wings to those who read.
Your novel was many years in the making. When we met (at the 2008 Pacific Northwest Writers Association conference) your novel had already seen several drafts, and you had experienced encouragement followed by discouragment. How did you maintain the heart and drive to see the book to print?
During times when life interfered with active writing, I nevertheless kept a running story in my head. Sometimes months would go by when I was unable to devote time to writing, but those seemingly dry periods were still rich with what I call “head writing.” During those times, I imagined my way through the lives of each of the characters. Without writing down a word, I found intimacy with each person—Lillie Claire, Brian, Allison, Jewell, even a cashier in a small super market scene. I knew what each character wanted to say and how they wanted to tell their story.
Every step of the way, it seemed I met resistance to tell the story of Lillie Claire from a first person perspective. I was discouraged by many “professionals,” with admonitions that a story presented from inside the mind of an Alzheimer’s sufferer was impossible.
I thank each person who hammered away at how “unrealistic” it was to continue with such an improbable story. Being dissuaded and discouraged by others allowed me to become steel, to write with the heart of a lion, while still floating like dandelion seeds on a summer breeze. I love every person who said I couldn’t because in the end, they gave me the gift of “I did.” Writing All the Dancing Birds was a daily practice of love, a story both soft and big, a moment for me to have a conversation with every person who has ever been sick, or is with someone who is sick, or who may become sick one day. It’s a story for all, but I hope it speaks only to you.
Bonus Question: I’m a word collector and urge others to keep a running list of favorite words. What are your favorite words?
My first favorite word is “You,” followed (in alphabetical order) by,
cherish – What a beautiful word, meaning to hold one dear.
defenestrate – meaning to throw out of a window. Writers often consider doing this to our manuscripts when we struggle with a scene.
diaphanous – pretty and evocative, like the texture of light hovering above water.
eponymous – The word just floats off the tongue, doesn’t it?
flapdoodle – Who wouldn’t laugh over this word?
propinquity – proximity or nearness. This word reminds me of how we need to stay close to one another, and always be glad for our connections.
writer – well, of course.