Lisa Genova's Blog - Posts Tagged "left-neglected"

I have a great office in my house. Brick floor, two deep and comfy chairs, a café table and chairs, and a desk with my iMac computer on it. Three of the four walls are windows, so it has lots of natural light, and the west window wall overlooks a saltwater creek that runs into Pleasant Bay. Two swans just swam by. A huge bulletin board hangs above my desk tacked with Still Alice and Left Neglected clippings, pictures of my kids, and my intention board. My intention board has lots of great words on it that help me stay grounded and balanced by simple reminder: Grateful, Grow, Create, Live in the Moment, Books that Make a Difference, Believe, Open Minds.

Sounds lovely, right? Inspiring even. It is, but honestly, I prefer Starbucks. I find it difficult to write at home. There are bills to pay, laundry to do, phone calls to take and return, food in the fridge. Not to mention all the chocolate. So at home, there is always the possibility that when a scene I’m writing isn’t flying effortlessly from my head into the pen, I’ll think, Hmm. I really should pay those bills. I know if I find myself choosing bills over writing the next sentence, it’s time to get out of the house.

Plus, I have three kids. If I’m home, one of them always needs me for something, even if there’s a perfectly good adult other than me here to get the job done. I’m a sucker for games and songs and hugs and kisses.

So I go to Starbucks. There’s nothing else to do at Starbucks but drink caffeine, which I desperately need because I have to keep up with the kids, and write. You can’t even daydream there for long without looking like a nut. I wrote Still Alice, Left Neglected, and Love Anthony almost entirely at Starbucks.

I love my home office and enjoy writing in here when I can. Like right now. But if I didn’t have it, I’d be fine at a table at the coffee shop down the street.

Just don’t tell my husband this. He’ll want to convert my beautiful office into something else, like a gym or a gameroom.

I had a book event in Sydney last year and was talking about STILL ALICE and the Dementia Advocacy & Support Network International (DASNI). And because I was in Sydney, I mentioned Christine Bryden. Christine was one of the founding members of DASNI and one of the amazingly generous people who shared with me what it's like to live with dementia while I was writing STILL ALICE. Christine was diagnosed with Alzheimer's when she was 46 years old. She wrote two incredible books, WHO WILL I BE WHEN I DIE? and DANCING WITH DEMENTIA. She is also an Australian, which is what made me think of and mention her aloud to the audience.

I met Christine online through DASNI in 2004. I think it was around 2006 when the group at DASNI received an email from her husband, Paul, saying that she wasn't doing so well and would be taking a step back from things. She would no longer be active on DASNI email or chat. I remember wondering and worrying about her many times since, but fearing the worst, I never had the courage to send a personal email to ask, "How are you doing?"

So during this book event in Sydney, I remained preoccupied with thoughts of Christine. When I returned to my hotel room, I turned on my computer, logged on to my email, and there, in my inbox, was an email from CHRISTINE BRYDEN.

!!!

She was just back from a vacation and wanted to let me know that she'd read STILL ALICE. She loved it and thanked me for thanking her in the acknowledgments. And she ended the email with, "if you're ever in Brisbane, let us know!"

Again, !!!

I was dumbstruck and thrilled, staring at an email from Christine after at least five years of not receiving an email from Christine on the very day I mentioned her name aloud after five years of not saying her name aloud while I'm in Australia and heading to, of all places, Brisbane!

I love coincidences like this because I don't believe in coincidences. I believe in magic and God and the spirituality of the Universe.

A few days later, I was in Brisbane, and Christine and her lovely husband, Paul, came to my book event at Dymock's. We had coffee outside after the event, then walked along the river, then shared stories over beers. I feel so grateful for having had the chance to meet her in person, to hug her and thank her again for all she's given to me, to get to know her and Paul better. And I feel peace in my heart, knowing that she is doing well.

Whether you have Alzheimer’s or are of a certain age that you’ve started routinely forgetting where you put your keys, you’re probably hearing a lot about the benefits of “exercising your brain.” We hear this “use it or lose it” philosophy mentioned frequently in sound bytes from medical experts, but what are they really asking us to do? And why? Are they just trying to get us to do lots and lots of crossword puzzles?

Here’s what they mean. Let’s think of the neurons in your head as roads, and let’s say you’re trying to remember a piece of information. Let’s say you’re trying to remember my name: Lisa Genova. When you think, “What is her name?” your brain starts looking for the road that will take it to the answer. You might travel down the road “Author of STILL ALICE” to get to Lisa Genova.

If that’s the only piece of information you know about me, you might have a hard time at first finding that one and only road. And because it hasn’t been well-traveled, the road might be small, unlabelled, maybe not even paved. It might take you a few minutes (or all day!) to remember my name.

But if you loved the book, if it stays with you after you finish the last page, if you talk about the book with friends and at book club, if you travel this particular road over and over, or in other words, if you practice and rehearse this information, “Lisa Genova is the author of STILL ALICE,” then the road becomes stronger. It becomes simple to find with a nicely labeled street sign, and it’s now wider and paved. After many experiences with “Lisa Genova is the author of STILL ALICE,” this road becomes familiar territory, smooth and easy to travel on. You now know my name and can remember it easily.

But what happens if you are in the earliest stages of Alzheimer’s, and amyloid-beta is starting to clog some of your synapses? Imagine amyloid-beta as a roadblock, keeping you from traveling down that road that leads to the information you’re looking for. What if amyloid beta is blocking the “Author of STILL ALICE” road to Lisa Genova. If this is the one and only road to my name, and it is blocked, then you can’t retrieve my name. Now when you ask yourself, “Who is the author of STILL ALICE?” you cannot remember no matter how hard you think. The information is inaccessible. Forgotten.

But let’s say you paved more than one road to my name. Let’s say you also built “Author of LEFT NEGLECTED Street” and “Neuroscientist from Harvard Avenue.” Now you can have a roadblock on “Author of STILL ALICE Road” and still have two other ways to get to my name. These other roads may not be the most direct routes to my name if you haven’t traveled them as much, but they’ll still lead you to Lisa Genova. You can still remember me.

The more connections you make to a piece of information (the more roads you build) and the more you use or rehearse that information (the more you travel those roads), the more able you’ll be to detour clogged connections (amyloid beta road blocks), and remember what you’re trying to remember.

Say you learn ten things about me. You've built ten neural roads. And now let's say you have Alzheimer's. You can have nine roadblocks, a significant amount of memory loss. But you still have one road left. You can still remember my name.

I've listened to a lot of writers talk about having "sacred spaces" for writing. Places that are pristine, quiet, beautiful. I always listen, nod, and smile.

If you've been to one of my talks or follow me on Facebook, you know I write at Starbucks. It's noisy and busy, and people know I write here now, so there's usually a distraction or two or four. The table I'm at now is wobbly, and the chair isn't ergonomically designed to protect my lumbar spine. But I love it here. It's my sacred space.

I write at Starbucks instead of in my beautiful home office because if I write at home, I end up not writing. Ethan will ask me to fix the wheel on one of his trucks, Stella will press her pudgy face up against the glass of the French doors and cry for me, Alena will come in and want to chat about jump rope or school or the funny thing she just thought about. And I can't resist any of it. Or I'll think, "I really should throw in a load of laundry," or "I have bills to pay," or "I wonder if we have any chocolate?"

So I write at Starbucks.

And the Starbucks nearest me is tucked inside a Stop & Shop. With a book deadline, three kids, two in diapers, and one drinking formula, this basically means I'm here ALL THE TIME. Seriously, how many of you hug and kiss the woman who checks out your groceries? I do because I feel like I know her that well.

I was here this weekend with all three kids because I needed to pick up food for dinner. To make the chore more fun for Alena and Ethan, I told them I'd get them a treat at Starbucks. I knew Alena would want an iced chai (like her mom), and Ethan would want an apple fritter. He's obsessed with them.

So we're in line, and for no reason whatsoever, Ethan winds up and slaps Alena. We still don't know why he committed this crime. I'm blaming systemic testosterone. Toxic stuff.

I said, "Ethan, you can't hit Alena. Tell her you're sorry."

He stared at me. No way. Not happening.

"Okay, Ethan, that's not a good choice. You hit her, and you won't say sorry. You're not getting a fritter. You sure about this?"

No apology.

Alena gets her iced chai, Ethan gets nothing. Ethan then throws the biggest tantrum Starbucks and Stop & Shop have ever seen. As he was losing his mind on the floor of Starbucks, I actually laughed to myself, thinking, "There's no screaming in my sacred space!"

I'm in Starbucks now, writing in my imperfect yet sacred space. And everyone here is still talking about the tantrum...

I'm in Cranston, RI, early for my very first anti-gravity yoga class. SO excited! I love this feeling--trying something new, opening up to a new experience. It reminds me of the year when I was writing STILL ALICE--acting, dancing, dating again after my divorce. I hope this class opens up the parts of me having to do with creativity and fearlessness. I need to call on both of these qualities to write LOVE ANTHONY.

I haven't really started writing yet. I've done a TON of research on autism, much more than I did for Alzheimer's even and much more than for Left Neglect. There's so much more written about autism--and oddly, really less is known about it. I've talked to about a half dozen parents so far--raw, honest, incredibly moving conversations that still play in my head. Lisa, you've done enough to get started. Go to Nantucket next week, then begin.

Creativity and fearlessness. I love this combination. So powerful, so ALIVE. The ingredients of powerful, alive writing. I need to feed this as much as possible through things like this yoga class. Maybe also an improv class in Boston? That would awaken an old muscle, a part of my soul I've been ignoring. What else? A dance class would be great. Make the time.

How else can I feed creativity and fearlessness? Maybe rock wall climbing? Maybe go to Italy in November for Ann Hood's writing retreat. The energy of the writers, the scenery, the FOOD--talk about feeding creativity, feeding the soul!

And I will have two weeks in the Margo Gelb Dune Shack in September, which does scare me a bit, to be totally alone, especially at night (plus no electricity, no plumbing)--that should help with fearlessness, making me feel powerful, giving me the courage that I need to write this book. And it will give me the quiet space and time to create.

Okay, it's time for class. I'm scared but excited--ready to fly!

American Libraries Magazine
By George Eberhart

The story of Still Alice

Lisa Genova, neuroscientist and bestselling author of Still Alice (2008), Left Neglected (2011), and Love Anthony (2012), presented the Arthur Curley Memorial Lecture on Saturday morning, January 27. Although her more recent novels focused on autism and hemispatial neglect, Genova chose to talk about her first book, which revolved around a 50-year-old woman, Alice Howland, who develops early-onset Alzheimer’s.

After getting her PhD in neuroscience from Harvard University, Genova decided to find out as much as she could about Alzheimer’s when her grandmother was diagnosed with the disease. She knew about the sticky proteins that prevent neurotransmission from brain cell to brain cell and lead to dementia, but this only helped “the scientist in me, not the granddaughter in me.”

Genova said she decided to write a story about Alzheimer’s when she realized that most self-help books were written “from the outside looking in.” Perhaps a novel could help others understand “what it really feels like from the standpoint of the patient.”

Only in 2003, when she was taking time off to raise her child and going through a divorce did she decide to sit down and write the book. “Scientists don’t write novels,” she worried. “I felt completely crazy not doing research.” However, her Harvard experience opened doors for her that usually remain closed for other writers. Genova was able to talk to leading neurologists about their experiences, and she was invited to join an online group of early-onset Alzheimer’s patients who called themselves PWD (“People With Dementia”). The group nicknamed her TAB (“Temporarily All-Brained”). “I resolved to learn as much as I could about the truth about living with Alzheimer’s, then launch into fiction,” she said.

It took one-and-a-half years to write the book, and “then came the literary agents,” Genova remembered. “I had to self-publish it because all the agents thought a book about Alzheimer’s was too sad, depressing, and scary. But in 2008 it was picked up by Simon & Schuster and it spent 41 weeks on the bestseller list.” And now a movie based on Still Alice will be filmed in the fall of 2013, starring major Hollywood actors (though she could not give any names).

“5.4 million Americans have Alzheimer’s,” Genova said. “We can learn about the science and the statistics, but with a story we can see how we are all similar and gain compassion and empathy for what a character is going through.” She added that library book events are her favorite, because they are “packed” with interested readers.

She is now working on a novel about Huntington’s disease, a genetic disorder that affects muscular coordination and cognitive abilities.