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