Are you working on any current writing projects?
I’ve begun writing my next novel, Left Neglected. This is a story about a woman in her midthirties who is like so many women I know today—multitasking all day long, trying to be everything to everyone at work and at home, spread extremely thin. One typical morning, late for work, racing in her car after dropping her kids off at school and day care, she tries to phone in to a meeting she should already be at when she takes her eyes off the road for one second too long. And in that blink of an eye, all the rapidly moving parts of her overscheduled life come to a screeching halt. She suffers a traumatic head injury. Her memory and intellect are intact. She can still talk and count. But she has lost all interest in and the ability to perceive information coming from the left side of space.
The left side of the world is gone. She has Unilateral Neglect.
She finds herself living in a bizarre hemi-existence, where she eats food only on the right side of her plate, reads only the right half of a page, and can easily forget that her left arm and hand even belong to her. Through rehabilitation, she struggles not only to recover the very idea of left, but also to recover her life, the one she had always meant to live.
While working with the Dementia Advocacy and Support Network, you spoke daily with people suffering from Alzheimer’s. What was that experience like for you? What were the most common struggles that these people faced?
It’s been an amazing experience. These people aren’t there to be superficial or beat around the bush. They don’t have the time to waste. We support each other and talk about the stuff that matters, so our conversations are often filled with vulnerability and bravery, love and humor, frustration and excitement. And when you share yourself like that, it leads to deep and intimate friendship. I truly love and admire the friends I’ve made through this group. Many I still know only through email. I’ve come to meet some in person at Alzheimer’s conferences, and it’s a great experience. We’re colleagues in our Advocacy pursuits.
People with Alzheimer’s stand on ground that is constantly shifting beneath their feet. Familiar symptoms get worse (more frequent or intensified) or new symptoms emerge, so just when people think they’ve adapted to it all, made all the adjustments and accommodations needed, there’s more work to do. This can be frustrating, exhausting, demoralizing. I see all that.
I think the most common struggle I see people face, though, is the alienation and loneliness. Because this disease takes people out of their formerly fast-paced, personally fulfilling careers; because everyone else stays busy in their busy lives and people with this disease have to slow down; and because of the enormous stigma placed on having Alzheimer’s, people with early-stage Alzheimer’s find themselves extremely alone. That’s why these online groups are so invaluable. They bring these people from all parts of the country together to share their common experience and break the isolation.
Do you believe we need to be more educated on Alzheimer’s?
I do, especially about early-onset and the early stages of Alzheimer’s. There are over a half million people in the United States alone under the age of sixty-five diagnosed with dementia, and they’re not included in what gets talked about when people talk about Alzheimer’s. The general public knows what the eighty-five-year-old grandparent in end stages of the disease looks and sounds like, but they have little idea what the fifty-year-old parent with Alzheimer’s looks and sounds like. It’s high time this group had a face and a voice.
A greater awareness of the early symptoms and experiences matters because people need to recognize the symptoms so they can get diagnosed and on proper medication sooner. It matters because people with early-onset need resources (like access to support groups) that are now primarily given to caregivers. It matters because drug companies need to start to recognize this as a sizable group worthy of inclusion in their clinical trials. Right now, many people with early-onset Alzheimer’s cannot enroll in clinical trials because they are too young. It matters because families deserve to plan properly for the future, both financially and emotionally. It matters because awareness will reduce the stigma placed on people still living their lives with this disease.
Which writers inspire you?
Oliver Sacks is my biggest inspiration. In fact, The Man Who Mistook His Wife for a Hat was really the spark that ignited my interest in neuroscience to begin with. There’s this quote from him:
“In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.”
That’s everything right there. That’s what I hope to do with my writing, both fiction and nonfiction.
What are you currently reading?
Oddly enough, I’m reading A New Earth by Eckhart Tolle, but not because Oprah told me to. It was recommended to me last August by a friend of mine with Alzheimer’s. I was interviewing him for my next book, and he was excitedly telling me about all the incredible new discoveries he’d made, from meditation to diet and exercise to self-awareness. He told me I absolutely had to read A New Earth and that it would change my life. He was right.
I’m also reading The Lace Reader by Brunonia Barry. Amazing!
Do you have any advice for aspiring writers?
I know so many aspiring writers who are sitting in a holding pattern, with a work completed, waiting to find a literary agent. They’re stuck, unable to give themselves permission to write the next book because they’re waiting to find out if their work is “good enough,” waiting to find out if they’re a “real writer.” This state of waiting, of not writing and self-doubt, is the worst state any writer can be in. My advice is this: If you don’t find a literary agent falling into your lap quickly enough, if you feel like your work is done and is ready to be shared with the world, self-publish. Give your work to the world. Let it go. And keep writing. Freedom! I was recently in my car listening to Diablo Cody, who wrote the screenplay for Juno, on NPR and when asked what advice she had for aspiring screen-writers, she said, “Self-publish.” I yelled alone in my car, “Woohoo! See?! Diablo Cody agrees with me, and she’s just been nominated for an Academy Award!”
Explain your writing schedule.
I have a newborn baby boy, so these days it’s catch as you can. But for Still Alice, I wrote in Starbucks every day while my then six-year-old daughter was in school. I found writing from home too difficult. There were too many distractions—phone calls to return, food to eat in the fridge, laundry to do, bills to pay. You know you’re procrastinating when you’re paying bills instead of writing the next scene! At Starbucks, there were no excuses. Nothing else to do but write. You can’t even daydream there for long without looking crazy. So you just put your head down and do it. And I found I always had to stop short to go pick up my daughter from school. I’d be right in the middle of a great scene, right in the zone, and it would be time to get my daughter. And that would be it for the day. I wouldn’t get back to it until the next morning. I stuck to that. My time to write was my time to write, and my time with my daughter belonged to us. I think having a limited number of hours each day to write kept me hungry to get back to it. I never dreaded it or experienced writer’s block. Every day, I couldn’t wait to get back to Starbucks, drink chai tea lattes, and write.