Lisa Genova

Anthony’s Rocks

Lisa Genova — Mon, 30 Jan 2012 16:47:00 +0000

I have about two months left to finish LOVE ANTHONY. Two months of writing, and then I need to edit, edit, edit, make sure the story WORKS, make sure I've told the truth. Please, God, let the story work. Please, when it's done, let the story leave the reader with resonance, thinking, stunned, wowed.

But I have A LOT left to write before it's done, and I'm scared. How do I get there from here? Lisa, you know the answer to this--word by word. See what's in front of you and keep going. Today you are writing about Anthony's rocks, and THAT IS ALL. Don't get ahead of yourself. Yes, the end is near, but you can't see it yet. You can't skip over this part and be done. You have to write every word before you get to write THE END.

How great is that going to feel? I remember exactly how I felt when I declared the first drafts of STILL ALICE and LEFT NEGLECTED done. Euphoric. Like giving birth. Unburdened. Like I could finally exhale.

It's not long now. Two more months. You're almost there. Write about Anthony's rocks. His pebbles. His beach stones. That's all. Today is not THE END. So stop thinking about that and write.

2011 Year in Review

Lisa Genova — Fri, 27 Jan 2012 18:03:00 +0000

I realize we're well into 2012 now, and I'm a bit late with this. I was late sending out my Christmas cards this year, too. If you keep reading, you'll understand and forgive me.

I traveled A LOT in 2011, mostly for Left Neglected but also for Still Alice. It was an amazing year and a real privilege to get to meet and connect with so many people from all over the world. But it was also quite challenging, talking to readers in Australia about Left Neglect or talking about Alzheimer's in Saskatoon when I was also supposed to be writing my next book about autism. And while I always at first reveled in the break from changing diapers, managing tantrums, and being my oldest's chauffeur, by the second day away, I was usually missing them all so much that I could (and sometimes did) cry. Note: If you come to my book event with your baby, please don't be alarmed if I ask you if I can hold him/her.

Here's where I went in 2011:

New York, NY
Framingham, MA
Boston, MA
Pawley's Island, SC
Isle of Palms, SC
Mt. Pleasant, SC
Concord, NH
Toronto, Canada
Duxbury, MA
Washington, D.C.
Madison, CT
Long Island, NY
Sandwich, MA
Savannah, GA
Vero Beach, FL
Toronto, Canada (yes, again)
Denver, CO
Tucson, AZ
Hyannis, MA
Danvers, MA
Sydney, Australia
Perth, Australia,
Brisbane, Australia
Yarmouth, MA
Wyomissing, PA
Tulsa, OK
Orleans, MA
Dennis, MA
Harwich, MA
Martha's Vineyard
Truro, MA
Centerville, MA
London, England
Lake Forest, IL
Cheshire, CT
Toronto, Canada (again)
Vancouver, BC
Saskatoon, Canada
Indianapolis, IN
Montreal, QC
Ottawa, ON
Halifax, NS
Swampscott, MA
Saint John, NB
Siena, Italy
Sandwich, MA
New York, NY

I'll be spending MUCH LESS time in airport security in 2012, but I do have a few book events already on the calendar for this year. Go to www.lisagenova.com to see where I'll be in 2012!

Notes from Italy, 11/15/11

Lisa Genova — Tue, 13 Dec 2011 17:14:00 +0000

I'm at Spannocchia (a 900-year-old farmhouse near Siena), sitting outside on a cool, sunny day at a rickety round table, about the size of a large pizza, on the lawn overlooking the hills of Tuscany.

They took the lemon trees inside yesterday. Winter is coming. The two cypress trees and bench that I woodblock printed with Sabra Field five years ago are to my left. I have such fondness for that time in my life. The last time I came to this magical place, I'd just finished STILL ALICE. And here I am again, this time in the middle of writing my third book.

I can smell lunch cooking. Onions and garlic. And fennel? Not sure. It smells delicious. People are chatting behind me on the terrace where we drank wine every evening five years ago. We don't drink there now because it's November and too cold (last time I was here, it was June).

A man is picking something from a tree and dropping it into a ceramic bowl. Something for dinner maybe. I love how connected Italians are to their land, the earth, their food. Back at home, my yard is a place where my kids play or ground that I walk over to get to the car. Here, it is tended to and touched daily. It is eaten. I like that. It's what we should be doing. Connection to the earth and what we eat, nourishing our environment and ourselves. At home, we go to the grocery store. We're disconnected from this process.

Connection and disconnection. LOVE ANTHONY is about this. Faith and loss of faith. Communication and silence. Connection and isolation. How do we love? What do we need in order to experience love?

Notes from My LOVE ANTHONY Writing Journal, 11/30/11

Lisa Genova — Thu, 08 Dec 2011 18:51:00 +0000

Just realized I'm on chapter 20. Sounds substantial, doesn't it? I'm at about 46,000 words and 200 pages, so it's getting there, baby. I go back and forth lately between thinking it's brilliant to thinking it's an absolute mess. I'm worried that Beth's story doesn't tie in strongly enough to Olivia's, that it's like--SO WHAT? Why not just tell Olivia's and Anthony's story?

I think because their story is too internal. Beth's story provides the movement, the action and immediacy. But why not tell Olivia's story in that way--tell the story of this mother who has a son with autism, how she first suspects it, then the diagnosis, living with it, etc--and make it linear? Because that's too predictable. It's been done. Mother has a child, expects a "normal" life, then there is a diagnosis and a deviated development, a deviated life. This mother's point of view has been told.

I'm hoping that this story offers something new and unexpected, that readers will learn about the experience of autism from the more severely affected end of the spectrum without feeling like they're reading a clinical manual, without being hit directly over the head with it. I want to tell a great story and give a voice to this voiceless child. How does he experience the world, emotions, relationships? How does his life matter? I want readers to experience what it might feel like to have this kind of autism. I think a straightforward, linear story of only Olivia and Anthony without Beth doesn't hold as much power somehow.

So finish the first draft, Lisa, and if there are ways that you can tighten Beth's ties to autism in metaphor, do it then. You've planted the seeds. Make sure that elements from each Anthony and Olivia chapter tie in to elements of Beths' chapters--illustrate that the spectrum is long and wide, and we're all on it. And then it will be brilliant, my dear. And when the first draft is done, have Tracey read it, and listen with an open heart to her feedback.

For now though, you are writing chapter 20. So what happens next?

Still Alice–Deleted Scene

Lisa Genova — Mon, 28 Nov 2011 14:39:00 +0000

My husband and I love watching the Deleted Scenes from the movies we rent. I love these bonus scenes because they give us a private peek into the creative process of that film. Those scenes were written, the actors memorized their lines. Time and money were spent on costume, lighting, makeup, direction. But some honest and brave editing minds decided that these scenes didn't serve the film as a whole, and they were cut. Out they went!

Manuscripts go through a similar editing process. If there are words, sentences, or scenes in the draft of my novel (and there always are) that don't serve the story as a whole, it's my responsibility to take them out. William Faulkner called it "killing your darlings."

I wish books, like rented movies, included a Deleted Scenes section at the back. Here's a deleted scene from STILL ALICE for you. It includes a character you don't know, Alice's friend Susanna. You don't know her because I deleted her entire character from the story. It didn't need her.

Sorry, Susanna darling, nothing personal. Just doing my job. Editing isn't for soft-hearted sissies.

"John?"

“Yeah?”

“We’re going to go take a walk down to the beach.”

“Alright, call me when you want me to come pick you up. You have your cell?”

She smiled and patted her baby blue Anna Williams bag. Satisfied with that answer, he kissed her, squeezed her hand, got in their car and pulled away.

Susanna arrived in Chatham five hours ago, and Alice was running out of time. John insisted that Susanna know about her Alzheimer’s before he left for Philadelphia in the morning. He was anxious to detail for her the rules and regulations surrounding Alice’s medication, her running routine, her cell phone, the Safe Return program, and to give Susanna her neurologist’s and his phone numbers, just in case. When she played this instructional speech in her head, it sounded very much like the ones she and John had delivered to their teenaged babysitters before leaving their children for weekends away in Maine or Vermont. She remembered feeling so excited to get away on those weekends, but also nervous about leaving their children behind with someone else to watch them. Anxiously pulled in opposite directions. Now she needed to be watched. This is how I want you to look after Alice while I’m out. She imagined that he might’ve actually composed a list that he planned to magnetize to the refrigerator. He was nervous about leaving her behind. Was he also excited to get away? Anxiously pulled in opposite directions.

She asked him if he would let her tell Susanna herself, and she promised that she would, but they’d just finished eating dinner at the Squire, and she hadn’t yet mustered up the courage to reveal her sad secret to her dearest friend. She felt completely clear-headed today. She’d come to recognize the difference between days that would be fraught with difficulties finding memories and words and bathrooms and days that her Alzheimer’s would lay silent and not interfere. On those quiescent days, she was her normal self, the self she understood and had confidence in. On those days, she could almost convince herself that Dr. Davis and the genetic screening had been wrong, or that the last six months had been a horrible dream. Only a nightmare, the monster under her bed and clawing at her covers not real. She was having one of those days today, and she wanted to hold on to being normal with Susanna for as long as possible.

They walked down Main Street without talking. The line of luxury cars and SUVs parked along the curb, outfitted with bike racks and kayaks bungeed on roofs, crammed with baby strollers, beach chairs and umbrellas, and sporting license plates from Connecticut, New York and New Jersey in addition to Massachusetts was an indisputable indication that the summer season was officially in full swing. Families walked along the sidewalk without regard for lanes of pedestrian traffic, unhurried and without specific destinations, strolling, stopping, backtracking and window-shopping. Like they had all the time in the world.

An easy, ten-minute stroll removed them completely from the bustling evening of downtown, early-July Chatham. As it always did, the spectacular view of Lighthouse Beach from the road filled her with awe and gratitude. They walked the thirty steps down to the sand. A modest row of sandals and flip-flops were waiting at the bottom where they’d been kicked off earlier in the day. It was nearing sunset, and there weren’t many people left on the beach. The sign in front of them read:

Warning: Strong Current. Surf subject to unexpected life-threatening waves and currents. No lifeguard. Hazardous area for: Swimming and wading, diving and water skiing, sailboards and small boats, rafts and canoes.

Aside from sand, water and sky, Lighthouse Beach shared little or nothing else in common with Hardings. At Hardings earlier that day, the water was pleasant and welcoming, and Nantucket Island could be seen in the distance. At Lighthouse Beach on the same day, the water was choppy and wild, and Alice knew from brief experience and reputation that is was always painfully cold. And, there was nothing to see in the distance but more ocean, nothing else between here and Europe. It was vast, impersonal, a little scary.

The breaking waves were relentless, powerful and loud, rumbling and churning, pounding at its shore. If it weren’t for the colossal seawall constructed at the edges of the properties of the million-dollar homes along Shore Drive, the ocean would’ve taken each house in, devouring them all without sympathy or apology. Alzheimer’s was like this ocean at Lighthouse Beach, unstoppable, ferocious, destructive. Only, there were no seawalls in her brain to protect her memories and thoughts from the onslaught.

Susanna hadn’t yet mentioned Greg. She probably wanted him to be here, but Alice requested in an email, without explanation or excuse, that she come to Chatham alone. Susanna replied with the word “fine”. It was equally vague without knowing the tone, but Alice guessed she was pissed. But, if she’d hinted that there was something important that she needed to tell her, Susanna would’ve dragged it out of her that day, over the phone, and Alice didn’t want to tell her like that. She wanted to tell her friend face-to-face, and she wanted to spend the week alone with her, without John and without Greg. It’s not that she didn’t want to meet Greg, but she didn’t want the week made superficial with good manners and appropriate guest considerations and entertaining. Even if they had another opportunity to spend a week together in the near future, this disease only got worse. She may not understand what her friend meant to her in the future. It was time to be a little selfish.

“I know you probably wanted to bring Greg.”

“I absolutely wanted to bring Greg.”

Well, now she knew. She was pissed.

“I know.”

“No, you don’t know. If he were my husband, you wouldn’t even think of not inviting him. I’d never tell you not to bring John or the kids. I accept your life and everything and everyone in it, but you don’t accept mine.”

“I do, Suz. This isn’t about him.”

“Then what, what is it about?”

“I have something to tell you, and it really can’t wait, and I couldn’t imagine combining what I have to tell you and the week I want to have with you with meeting Greg.”

“Well? What is it?”

Here it was, the moment she had to cross over. No more normal.

“I have Alzheimer’s Disease.”

She saw Susanna’s defensive anger leave her muscles and posture and drift away. She saw the fight in her pickle green eyes dissolve into fearful questioning. She waited a long time for Susanna to speak the questions her eyes asked. But they just stayed there.

“I was diagnosed in January, we told the kids over Easter. I couldn’t tell you over the phone, I have a really hard time on the phone now. And I couldn’t email this.”

The questions in Susanna’s eyes, now blurry with tears, begged for some other answer.

“I’m forgetting things, I’m getting confused and lost, I’m making all sorts of bizarre mistakes.”

It was news neither of them wanted to hold, but they’d been burdened with this kind of load before, and they were strong enough to carry it together. Susanna finally spoke.

“What’s going to happen to you?”

“It’s Alzheimer’s. You know what’s going to happen.”

“But there’s got to be something that can at least stop it from progressing?”

Alice watched the tide coming in, erasing footprints, demolishing an elaborate sandcastle decorated with shells, filling in a hole dug earlier that day with plastic shovels, ridding the shore of its daily history. She envied the beautiful homes behind the seawall.

“No, there’s nothing.”

“But we’re too young for you to have Alzheimer’s. It’s just wrong. It has to be something else.”

This was, predictably now, everyone’s rebuttal, including her own, what seemed like so very long ago. It just wasn’t valid. In fact, the first patient ever diagnosed with Alzheimer’s, a woman named Auguste D, was fifty-one when she was first admitted to a hospital in Frankfurt with symptoms of abrupt personality changes and profound memory loss. She died at the age of fifty-six.

“No, it’s definitely Alzheimer’s. You can be this young. I’m positive for a mutated gene that causes it.”

“How long before--?”

“I don’t know. They don’t know. Two years, twenty years. Hopefully, long enough for me to meet Greg.”

Susanna smiled, but her eyes didn’t agree.

“Do the people at Harvard know?”

“No, but I probably won’t be able to keep it hidden too much longer.”

“What are you going to do?”

“About Harvard?”

“About everything.”

“I don’t know. I thought about trying to write one last paper. But, it would really be so hard for me now. I could do it, but it wouldn’t be my best work, not even close. Not what I want to be remembered by.”

Alice Howland, is best remembered for ‘Molecules to Mind’, a ground-breaking text coauthored with her husband, John. It was her proudest written achievement, her words and ideas blended with John’s, creating something together that was unique in this universe, informing and influencing the words and ideas of others. She’d assumed they’d write another.

“Right now, I’m just living in my life, continuing the best I can at Harvard, trying to contribute for as long as I can and trying to really notice and enjoy all of the details in everything while I still can. I don’t know what else to do. What would you do?”

“I don’t know. If I could bring myself to leave my bed, probably the same thing. It’s what we should all be doing, actually. What are you going to do when you have to leave Harvard?”

“No idea. I’ve been terrified to think about it.”

“How long have you known about this?”

“For sure, since January.”

“I can’t believe you’ve been going through all this without me. I hate living so far away from you. How’s Johnny handling this?”

“Really well in some ways and not so well in others. I don’t think he’s entirely accepted that this is happening. I think he actually thinks he’s going to come home from this conference with a cure for me. And there just isn’t one. I’m worried about what it’ll do to him when he realizes that. And I’m worried about what this is going to do to him as I get worse.”

“Have you thought about taking some time off and traveling together?”

“We’ve both already traveled everywhere. There’s nowhere that I’m really dying to see.”

“Still, it might be nice to get away, go somewhere beautiful and relax without a conference or symposium lecture hanging over your heads.”

It wouldn’t matter where they went, her Alzheimer’s was coming with her. There was nowhere to run, no vacation from dementia.

“True, but that’s what this place is for us. I love it here. And being here on the Cape, the kids can come and visit.”

“How are the kids?”

“Anna—Anna…”

She was trying to say that Anna was positive for the same mutation, but her voice became unexpectedly flooded with emotion, and her breath was involuntarily redirected from the task of speaking to crying. She hadn’t spoken of Anna’s genetic testing results to anyone other than Anna since Easter. They were hugging each other now, both crying. It felt so good. Susanna’s arms had always been a safe place for her to cry. It was several minutes before Alice was able to finish her sentence.

“Anna and Tom underwent the same genetic testing I did. Anna has what I have.”

“Oh my God. What about Tom and Lydia?”

“Tom’s fine, and Lydia won’t get tested.”

“Of course.”

They both laughed a little.

“Anna’s okay though. She’s not looking at this like a death sentence. The best thing to come of this, I guess, is that she’d been trying to get pregnant and couldn’t. So now she’s doing in vitro, and because they know she has the mutation, they can actually test the embryos as well and only implant the ones that are mutation-free. So we’ve all been focusing on the fact that Anna is going to have a baby that won’t get Alzheimer’s. It’s truly amazing what they can do.”

“But what about something truly amazing for you? There’s got to be something. What about clinical trials?”

“I’m in one. But, I don’t even know if I’m getting the drug or a sugar pill. I’ve read everything about this disease and everything about this drug. They may be on the right track with this one, but I don’t think it’s the magic bullet.”

“So maybe your progression will be really slow. You caught this really early, and your progression will be slow, and they’ll discover the magic bullet in time for you.”

“Maybe.”

“Alice, you’re going to be okay. You can hold on for the magic bullet and get through this.”

Susanna had told her that she was going to be okay before. She’d said it with the same tenderness and conviction that was in her voice now. Alice believed her whole-heartedly thirty-two years ago, and that magical belief helped move her through the morning of her mother’s and sister’s funeral, their birthdays, holidays, her graduation, her wedding day. And Susanna had been right. Eventually, Alice was okay. But Alice didn’t believe her now. She wished that she did.

“And you’re too smart anyway. You can afford to lose a few brain cells. This is just God’s way of showing you what it’s like to be the rest of us.”

They both smiled. The sun, low and impossibly big in the pink and blue sky, was readying to plunge into the Altantic. This wild and dangerous ocean before her was as beautiful as anything she’d ever seen. She wondered if Auguste D had ever seen something this beautiful before being admitted to that asylum in Frankfurt.

“What should we do?” asked Susanna.

“About my Alzheimer’s?”

“No, together, tonight, right now.”

“Want me to call John to come get us?”

“No, not yet. Let’s go enjoy the view and a big fat glass of wine from the Chatham Bars Inn.”

“Perfect. Oh, you’ll love this. The antioxidants in red wine and dark chocolate are thought to be as effective at treating this as any drug.”

“Alright then, my love, let’s go get you some medicine.”

Oh Canada!

Lisa Genova — Tue, 01 Nov 2011 14:35:00 +0000

2011 will be remembered by me as the Year I Went to Canada. Before 2011, I'd never been. I wasn't allowed to go on my high school class trip to Montreal, and I believe my brother's hockey team traveled north at least once to play a Canadian team, but I stayed warm and snug at home.

That all changed this year. I went to Toronto twice in February, both times to promote LEFT NEGLECTED (note to Simon & Schuster--how about promoting my books in Hawaii in February? Just a thought). The second February trip was for an Indigo Book Event with Jeannette Walls (author of The Glass Castle and Half Broke Horses) and Elena Gorokova (author of Mountain of Crumbs) hosted by Heather Reisman. An amazing event!

The next time I traveled to Canada was in October, also known as The Month I Was in Canada. I went to Toronto, Vancouver, Saskatoon, Montreal (finally!), Ottawa, and Halifax on a speaking tour---the Coping with Care series sponsored by Dundeewealth. I spoke to audiences about the emotional effects of living with Alzheimer's and then tax expert, Evelyn Jacks, spoke about financial planning for aging and ailing parents. We fielded questions, and I signed books. And then we went to the next airport and hotel. We (along with the wonderful people from Dundeewealth) were a great team, and it actually feels strange now to travel anywhere without them.

To wrap up my tour of Canada, I then went to Saint John to give a similar talk about STILL ALICE and Alzheimer's for the St. Joseph's Hospital Foundation.

Although I was in Canada for much of October, I unfortunately didn't get to see much of it. I went from airport to hotel to hotel grand ballroom to sleep to the next airport. It looked beautiful from the sky. But I did get to see so many friendly, warmhearted, and beautiful Canadians, including my friend Lynn from Vancouver and my friends Mike, Sue, and Karyn from New Brunswick. I met Lynn originally online in 2004 through DASNI when I was doing research for STILL ALICE, and we finally got to meet in person in Vancouver. What a thrill!

And I originally met Mike, his wife Sue, and his sister Karyn online when doing research for LEFT NEGLECTED. Mike has Left Neglect. We've been in touch quite a bit since and have become good friends, and it was so much fun to spend a little time with them in Saint John.

It's November 1, and so The Month I Was in Canada is officially over. I made it through, and more impressively, my husband and three children made it through. It feels good to be home. Home, husband, kids, Starbucks, writing LOVE ANTHONY. Sounds relaxing, eh?

No more travel...until I go to Italy in 9 days...

Notes from My Writing Journal, August 29, 2011

Lisa Genova — Thu, 08 Sep 2011 15:26:00 +0000

I was in London last month because LEFT NEGLECTED was chosen by Richard and Judy for their autumn 2011 book club. For those in the US who haven't heard of Richard and Judy, their Book Club "has as powerful an influence on the UK book-buying public as the Oprah Winfrey book club had in America." So this was a huge and an exciting trip! I did the Richard and Judy interview, recorded a podcast for WH Smith, signed books, went sightseeing, and had a lovely time meeting the Simon & Schuster UK team in person. AND I wrote some of LOVE ANTHONY every morning. Good author. Here's a snippet from my writing journal:

I'm in London, baby! I'm at a Starbucks (I know this is lame, but I can't resist; it calls me like home) near the Charlotte Street hotel, drinking chai, and facing the street while I write this. London looks a lot like Boston but much GRANDER in scale. Love the red double decker buses that go by every minute, the funny little black cars. Lots of walkers, all in sensible flats. So far the people here are super friendly and cheery--I expected more reserved, abrupt, aloof, but not the case. Just saw the first smoker. I expected more smokers, too.

But I've barely been here yet. It's 9:30 am, and I'm meeting my editor and publicist here at 10:30 for a day of sightseeing. YAY! How crazy lucky am I?

I've seen four street sweepers go by in less than 15 minutes (Ethan would be in heaven here!)--this place is CLEAN. Seriously, the streets and sidewalks are spotless.

I'm on chapter 8, back with Olivia before we go to LoLa with Beth. Okay, so what the hell happens in chapter 8 with Olivia? I have no freakin idea. Okay, don't panic. Let's find it. So she just read her journal for the first time, is facing/confronting her past. Huh! Just like Beth is confronting her past, looking for pieces of herself, looking for answers. And in facing the past, both women will make room for the possibility of a new future...

And today is September 8. I'm home from London, sitting at my local Starbucks, and I just finished chapter 8. On to chapter 9! Now what happens in chapter 9? Don't panic...

Top 5 Reasons Ellen Should Have Me On Her Show

Lisa Genova — Wed, 10 Aug 2011 16:41:00 +0000

1. I mention Ellen and her show 13 times in my novel, LEFT NEGLECTED. Having me on her show would be a great way to thank me in person.

2.     Portia would be amazing as Sarah Nickerson in the movie.

3.     Oprah’s not the only one who reads.

4.     Like Ellen, my mission is to not only entertain, but to also educate and connect people through gained understanding, sensitivity, and empathy.

5.     If she doesn’t want to talk about my book, we could always discuss my three-year-old son’s youtube video, Dog Poopy in My Pocket.

Building Neural Roads

Lisa Genova — Mon, 01 Aug 2011 15:58:00 +0000

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.

Upcoming Appearances

Lisa Genova — Tue, 26 Jul 2011 15:45:36 +0000

Past appearances include everywhere from Cape Cod to Australia, from Alzheimer’s associations to independent bookstores. See all past appearances.

Interested in booking Lisa for a book or speaking event? Click here for more information, or scroll to the bottom of the page.

Sign up for email alerts for certain events.

June 5, 2012
BEA
New York, NY

June 15, 2012
West Dennis Yacht Club Book Club

June 15-17, 2012
Nantucket Book Festival

November 14, 2012
Alzheimer’s Association, Houston & Southeast Texas
Luncheon Keynote
Beaumont Country Club, Beaumont, TX

November 15, 2012
Alzheimer’s Association, Houston & Southeast Texas
Luncheon Keynote
River Oaks Country Club, Houston, TX

Past appearances include everywhere from Cape Cod to Australia, from Alzheimer’s associations to independent bookstores. See all past appearances.

To schedule a book event, please contact:
Jean Anne Rose
Director of Publicity
Gallery Books
1230 Avenue of the Americas
New York, New York 10020
212-698-7579
JeanAnne.Rose AT SimonandSchuster DOT com

To schedule a speaking event, please contact:
Blair Bryant Nichols
Director
Simon & Schuster Speakers Bureau
212-647-6313-direct
646-810-5793-fax
BlairN AT simonspeakers DOT com

Tantrums in Sacred Spaces

Lisa Genova — Mon, 20 Jun 2011 15:43:00 +0000

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 (3) will ask me to fix the wheel on one of his trucks, Stella (10 months) will press her pudgy face up against the glass of the French doors and cry for me, Alena (11) 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 snapped this photo of him in the produce aisle:

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

When is it Normal and When is it Alzheimer’s?

Lisa Genova — Wed, 01 Jun 2011 16:02:00 +0000

Since the release of Still Alice, I’ve had the privilege of talking to a lot of audiences about Alzheimer’s. One of the most common questions people ask me is:

“When I can’t find my keys, how do I know if that’s normal forgetting or a symptom of Alzheimer’s?”

My quick and dirty answers are usually something like:

“Well, when you find your keys, are they on the table or in the refrigerator?”

and

“We all have trouble finding where we put our keys. It’s worrisome if you find your keys and then can’t remember what you’re supposed to do with them.”

Forgetting keys, names, how to get somewhere, how to do something–How do we know when it’s normal and when it’s Alzheimer’s?

The Alzheimer’s Association has put together the 10 Warning Signs List.

They also provide this phone number if you’d like to talk to someone about your concerns: 877 IS IT ALZ

My friend Kris recently shared one of her early warning signs (warning sign #4) with me:

My biggest tell-tale sign was when I’d gone shopping with my husband, and we went to a Best Buy store. I was looking at some CDs, and my husband had gone off somewhere else, and I looked up from the CDs, and I didn’t know where I was or how I had gotten there. It’s kind of hard to be in a Best Buy store and not know you’re in a Best Buy store, you know, with all the Best Buy signs everywhere. The only way I can describe it, and it’s so funny because in your book it was like this, it’s like an out of body experience.

I remember going out of the store to look at my surroundings, and I looked at the sign, but I couldn’t read that it was Best Buy. I saw the sign, but I couldn’t put together that I was at the Best Buy store. So I remember sitting down on the steps in front of the store and thinking, ‘Well, I got here somehow, I’m just going to have to figure out how I got here.’

I sat there for a while and then went back in the store, and I recognized my husband. And I thought, ‘OK. I got here with him, I’m still not sure where I am, but I got here with him and I’m okay because I know I can get home with him.’ And I didn’t say anything to him. I just followed him out to the car, got in the car, went home, and that night I still could not remember where I had been.

I didn’t want to alarm my husband about it, so just jokingly I said to him, ‘You know, I know we went out today, but I can’t remember where we went.’

He said, ‘We went to Best Buy.’

And I said, ‘Oh, yeah.’

How old were you?

46.

When I was diagnosed with Alzheimer’s, I was relieved because now I knew there was a name to it. I know there’s no cure, and it broke my heart, but by the same token, now I knew what I was dealing with and that I wasn’t crazy.

Past Appearances

Lisa Genova — Sun, 29 May 2011 15:04:14 +0000

2011

January 6
Book Launch Party
Where the Sidewalk Ends
Main Street, Chatham
7 pm

January 7
Barnes & Noble
Framingham, MA
7 pm

January 8
Borders Books
Boylston Street, Boston
2 pm

January 14
Moveable Feast
Pawleys Island, South Carolina

January 15
Wild Dunes Author Luncheon
Isle of Palms, South Carolina

January 16
Barnes & Noble
Mt. Pleasant Towne Centre
South Carolina
2 pm

January 20
Gibson’s Bookstore
Concord, New Hampshire
7 pm
Presented in partnership with New England Handicapped Sports
A portion of sales this evening will go to benefit NEHSA

January 24-25
Toronto, Canada

January 30
Duxbury Free Library
Sunday Salon Series
2-4

January 31
The Diane Rehm Show
NPR
10-noon

February 2
RJ Julia Independent Booksellers
Madison, CT
7 pm

February 3
Annual Coping & Caring Conference and Awards Luncheon
Long Island Alzheimer’s Foundation
Keynote, 11:00

Februrary 12
Yellow Umbrella Books
Chatham, MA
1-3

February 13
Sandwich Library
sponsored by Titcomb’s Bookshop
3:00

February 18 & 19
Savannah Book Festival
Keynote

February 21
The Vero Beach Book Center
4 pm

February 22
Where the Sidewalk Ends Book Club
7 pm

Februrary 24
INDIGO MANULIFE
with Jeannette Walls and Elena Gorokhova
55 Bloor Street W.
Toronto, ON
7:00PM

March 9
RJ Julia Bookstore
Madison, CT
6:15

March 10
Tattered Cover Book Store
Colfax
7:30
Denver, CO

March 11, 12 & 13
Tucson Book Festival

March 25
Breakfast with the Authors
presented by Cape Cod Writers Center
Cape Codder

April 27
Massachusetts Library Association
Crowne Plaza
Danvers, MA
12:45-2:00

April 29-May 11
AUSTRALIA!
See Lisa Genova’s Facebook page for details.

May 21
Girls’ Cape Escape Weekend
Red Jacket Resort
South Yarmouth
3:00-4:30

May 26
Annual Senior Health and Wellness Event, celebrating Older Americans Month
Crowne Plaza Hotel
Wyomissing, PA
Keynote
9 am

June 6
Kings Way Clubhouse
Ardeo’s Grille Dining Room
9:30-noon

June 9
Alzheimer’s Association
Caregivers: It’s time to Connect, Participate, and Advocate
Keynote
Renaissance Hotel
Tulsa, OK
8:45 am

July 12
Snow Library
Orleans, MA
7pm

July 29
Dennis Public Library Friday Author Series Event
@ Sea View
76 Chase Ave, Dennisport shore
4-6 pm

August 4
Authors Literary Luncheon
Sponsored by Where the Sidewalk Ends
Wequassett Inn Resort

August 7
Martha’s Vineyard Book Festival

August 11
Brewster Bookstore
along with Christopher Seufert (author of Cape Cod & Islands Reflections)
10:00

August 12
Books By the Sea
Osterville Historical Society Farmer’s Market
along with Christopher Seufert (author of Cape Cod & Islands Reflections)
9-1

August 15
Cape Cod Writers Annual Summer Conference
Keynote & Pitchapalooza!
7 pm

August 16
Truro Public Library
7 pm

August 25
Eldredge Public Library
7 pm

August 27-September 1
London

September 21
Harwich Village Libraries Authors’ Tea
Wequassett Inn
2:00-4:30

September 30 & October 1
Ragdale’s Novel Affair

October 5
Ninth Annual Author Event at Artsplace
Cheshire, CT
6 pm

October 11
Understanding the Emotional Effects of Alzheimer’s
sponsored by Dundee Wealth
The Westin Prince
Toronto, ON, Canada
7:30 pm

October 12
Understanding the Emotional Effects of Alzheimer’s
sponsored by Dundee Wealth
The Fairmont Pacific Rim
Vancouver, BC, Canada
7:30 pm

October 13
Understanding the Emotional Effects of Alzheimer’s
sponsored by Dundee Wealth
TCU Place
Saskatoon, SK, Canada
7:30 pm

October 15
Author Solutions First Annual Author Conference
Luncheon Speaker
Hyatt Regency
Indianapolis, IN

October 18
Understanding the Emotional Effects of Alzheimer’s
sponsored by Dundee Wealth
Delta Centre-Vilee
Montreal, QC, Canada
7:30 pm

October 19
Understanding the Emotional Effects of Alzheimer’s
sponsored by Dundee Wealth
The Westin Ottawa
Ottawa, ON, Canada
7:30 pm

October 20
Understanding the Emotional Effects of Alzheimer’s
sponsored by Dundee Wealth
The Westin Nova Scotian
Halifax, NS, Canada
7:30 pm

October 24
Swampscott Public Library

October 26
St. Joseph’s Hospital Foundation
Keynote
St. John, NB, Canada

November 10-18
Italy with Ann Hood

November 28
Sandwich Women’s Club at the Daniel Webster Inn

2012

January 17, 2012
Literary Society of Northern Trust
Fort Meyers, FL
5:00

January 20
To Not Fade Away (A documentary film about Alzheimer’s)

January 31- February 2
Distinguished Alumni in Residence Program at Bates College, Lewiston, ME

March 2, 2012

STILL ALICE Community Read
sponsored by the Findlay-Hancock County Community Foundation
Findlay, OH

March 6, 2012
STILL ALICE, LeFeber Winter Lecture Series on Aging
Rosenberg Library, Galveston, TX
5:00

April 2, 2012
Alzheimer’s Association Luncheon
Keynote
Portland, Oregon
Oregon Convention Center
noon

Still Alice, still going!

Lisa Genova — Fri, 20 May 2011 14:21:00 +0000

My books feel in some ways like my children (so far, I've given birth to 3 babies and 2 books). Each one is unique, I love them all, and you'd better watch out if you have anything bad to say about any of them (well, I understand that not all reviewers and readers are going to love all of my books, but they're not allowed to say anything mean about my kids!).

And even though I have no favorites, there's a special place in my heart for the first one, both child and book. I didn't know what the heck I was doing with either one (as a mother or an author), and I'm eternally grateful to both of them for bumping their way into this world and into my life, however ungraceful and ignorant I was in guiding them here.

This week I received phenomenal news about STILL ALICE, my firstborn book. STILL ALICE won the Bexley 2011 Book of the Year award! More than two years after its publication date, I couldn't be more proud!

Because this distinction is awarded from England, I thought I'd share with you some of the UK STILL ALICE covers (the different covers are like showing people pictures of your baby dressed in different outfits).

Here's the original UK cover concept that was rejected:

And the original UK paperback that was released in March 2009:

And the STILL ALICE paperback released in the UK a year later, the copy on the stands there now:

Cute, huh?

Thank you so much for choosing STILL ALICE as the 2011 Bexley Book of the Year. I'm truly honored and thrilled! Thank you for reading STILL ALICE and for using the book as a vehicle to discuss Alzheimer's. So many people are afraid to talk about Alzheimer's. It's incredibly rewarding to know that readers are braving this scary topic and coming away with a better understanding of this disease, the people who live with it, and that we are more than what we can remember.

Again, so proud. Now off to pay some attention to my third "baby," LOVE ANTHONY....

Australia Book Tour 2011: Most Memorable Moments

Lisa Genova — Mon, 16 May 2011 17:37:00 +0000

Meeting Christine and Paul Bryden in Brisbane (see previous post).

Fireworks over the river during dinner in Brisbane, arranged just for me by my publicist (not really, but we had front row seats and no knowledge that this would be happening--we were delighted!).

The complete, circular rainbow my husband and I saw at the top of the Harbor Bridge. It was huge and breathtaking, and it encircled the Opera House. I don't have a photo for you because Bridge Climb Sydney doesn't allow anyone to carry cameras on the climb (my poor photographer husband was beside himself--missing the best photo opportunity of his life!).

The many times I was stumped by the accent. And I grew up with a THICK Boston accent, so this surprises me a bit. Let me give you an example: At a book signing in Perth, a reader told me her name and handed me her copy of LEFT NEGLECTED. I looked up at her, stumped. She said her name again. I asked her to repeat it. I still couldn't make out what she was saying. I finally asked her to spell it: "Sue." (She's from New Zealand.)

Koalas, caramel and real.

Fish and chips on Watson's Bay.

My beautiful publicist, Anabel. Thank you for a most memorable and amazing tour and for taking such good care of us!

Christine Bryden

Lisa Genova — Thu, 12 May 2011 14:43:00 +0000

I had a book event in Sydney last week 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.

A Confession and Apology

Lisa Genova — Sun, 01 May 2011 22:57:00 +0000

So first, the obvious. I'm a terrible blogger. I have no stamina. I started out with the best of intentions, all gung-ho. And then...I haven't been here since February. Which brings me to the apology. I'm so very sorry for bringing you here with the promise of a blog, and then leaving you here, awkwardly wondering if I'm ever coming back. Actually, I can't imagine that anyone's still here, so maybe I'm apologizing to cyber air. Is anybody still here?

In any case, I'm back! Let me catch everyone (if anyone's reading) up on the last few months. The US book tour was amazing. It brought me to Toronto twice, NYC twice, Boston, New Hampshire, Washington, D.C., Connecticut, South Carolina, Colorado, Arizona, Georgia, and Florida. I was up in the air A LOT this winter (and didn't see George Clooney once--so disappointed!). It was a stormy winter with TONS of snow in New England, and I faced flight delays and event cancellations (RJ Julia was postponed due to snow twice!). In fact, all of Boston Logan airport shut down once, and I had to regroup and take an Amtrak train. Dear Simon & Schuster, please consider releasing my next book in the spring.

Some highlights of the US tour:

Meeting Diane Rehm.

Meeting authors Jeannette Walls and Elena Gorokhova in Toronto.

Meeting authors Jamie Ford (and wife Leesha), Helen Simonson, Luis Alberto Urrea (and wife Cindy), Ann Hood, and Julia Glass at the Tucson Festival of Books.

Meeting my friend Kris just before giving the keynote at the Savannah Book Festival. Kris and I have known each other for years, but only online and over the phone. Kris has early onset Alzheimer's. It was so moving for both of us to finally meet in person.

Seeing so many volunteers from NEHSA, including Tom Kersey, at Gibson's Bookstore in New Hampshire. Remembering Tom presenting me with the signed snowboard and official NEHSA jacket still moves me to tears.

Getting to spend time with my Aunt Mary in South Carolina and my Aunt Anne in Florida.

Okay, now that you're caught up, I can start from where I am---SYDNEY, AUSTRALIA! I'll be touring here (Sydney, Perth, and Brisbane) for the next ten days. And since I left my darling husband home with three kids all winter for the US tour, it was only fair that I bring him to Australia, so he's here with me (a HUGE thank you to our parents and Sue for watching our children while we're on the other side of the world!).

I'm off to Circular Queue to write a little of LOVE ANTHONY by the Opera House before my book events today--sure to be a highlight of this tour! And I'll keep you posted on what happens while I'm down under--I promise!

Gibson’s and New England Handicapped Sports Association

Lisa Genova — Tue, 01 Feb 2011 17:12:00 +0000

Last week I attended one of my all-time favorite book events. It was at Gibson's Bookstore in Concord, New Hampshire. The bookseller was gracious, the crowd was huge, standing room only, and the Q&A part of the event was lively and fun. But the best part of this event for me, and the reason why I'm sure I'll tell my grandchildren about it someday, were the people who came from New England Handicapped Sports Association (NEHSA).

For those of you who've already read LEFT NEGLECTED, you know a little about NEHSA. You know that this is an organization of mostly volunteers, people who make it their mission to "bear witness to the triumph of the human spirit by helping people with disabilities and their families enrich their lives through adaptive sports." They help people who have traumatic brain injuries (like Sarah), who have amputations or MS or autism learn to ski or snowboard. They give people a sense of freedom, independence, confidence, and joy that transcends the experience on the mountain.

When I was doing research for LEFT NEGLECTED, I visited NEHSA at Mount Sunapee in NH. I met with Tom Kersey, the executive director there, and within a few minutes of talking with him, I knew I wanted to include NEHSA in my book. I knew I wanted them to help Sarah get back on the mountain and that NEHSA would help her imagine a new dream for her life. A new normal. And because of all the positive, life-changing gifts they give to people, I hoped my book would give them some great exposure---some readers would be people or know people who might benefit from the NEHSA experience. And maybe it would create opportunities for donations and raising funds.

Never did I imagine that NEHSA would be giving anything to me. So imagine my surprise when Tom Kersey and the volunteers and members of NEHSA presented me with an official NEHSA jacket and a snowboard! Sarah's snowboard--signed by everyone at NEHSA. I was so truly moved!

I now wear my jacket with great pride (and with great appreciation given all the snow we've been getting this winter!)--I'm so honored to be an official member of the NEHSA team.

Now to see if I'll ever get up the nerve to snowboard!

South Carolina

Lisa Genova — Mon, 24 Jan 2011 14:32:00 +0000

Last weekend my book tour took me to South Carolina. When my publicist originally told me I'd be going to South Carolina for a weekend in January, I thought, "Fantastic! It'll be WARM!" My Aunt Mary moved from Massachusetts to South Carolina ten years ago, and she's always bragging about 70 degree days while we're up here shoveling snow.

I arrived at Myrtle Beach last Thursday evening, and it was 36 degrees. So not warm. Ah well. I wasn't there to sun bathe or play golf anyway.

On Friday, I was the Moveable Feast author at Pawleys Plantation. It was a great event, attended by about 150 people (mostly women, a few brave men). I talked for about 40 minutes and then opened the floor to a lively and fun Q&A (always my favorite part of book events). Thank you to Litchfield Books for sponsoring and promoting the Feast (they have a great lineup of authors this winter, including one of my favorites, Elizabeth Gilbert)!

On Saturday, I had the honor and pleasure of being one of the panel authors at the Wild Dunes Author Luncheon. This event was also very well attended (about 150). The best part of the event for me was meeting and learning a bit about the other authors. Mary Alice Monroe, a passionate environmentalist and bestselling author, was our dynamic and gracious moderator. My fellow panelists were: Jeffrey Stepakoff, author of Fireworks Over Toccoa, Ann Ross, author of the Miss Julia novles, Tamar Myers, author of The Headhunter's Daughter (among many others), and Diane Chamberlain, author of The Shadow Wife (among 20 others!). It was especially fascinating and reassuring to hear about each author's writing process. Mine seems to be as methodical, mysterious, magical, and terrifying as everyone else's.

On Sunday, I sat a small table with my Aunt Mary at the front of Barnes & Noble for an hour and a half. My friend, Doug, from college and a lovely woman from Facebook stopped by to chat and buy a book. Not exactly the crowd of 150 that I'd been spoiled with during the previous two South Carolina events. Ah well. I didn't mind. Events like that keep you humble. And it was 60 degrees outside.

Shameless Plug #2

Lisa Genova — Tue, 18 Jan 2011 16:42:00 +0000

Please buy my Mommy's book! Seriously.

Top Ten Best Things About My Trip to NYC

Lisa Genova — Fri, 14 Jan 2011 00:14:00 +0000

I went to NYC on Tuesday with the plan to travel to Madison, CT that night with my publicist to attend a book event at RJ Julia's. But alas, Mother Nature had other plans and threw a huge snow storm at us. The event has been moved to February 2, 7 pm. So, no book event in CT or NYC, but I had a great time! Here are the top ten highlights:

10. The FOOD. Oh my, the FOOD. Especially memorable--the lobster sandwich at Oceans.

9. NYC Firemen. On my first night, when I should've been at RJ Julia's, there was an electrical fire and people were trapped in an elevator in my hotel. I was "trapped" in the lobby for about two hours, watching the firemen. They were all in full gear, looking larger than life, wielding hatchets and long metal poles (I assume for extracting the people from the elevator; I was so grateful to be trapped only in the lobby!). It was quite an exciting, if inconvenient, scene. My 3 year old son would've loved it.

8. Hearing my name and Snooky mentioned in the same sentence. It turns out Snooky has a book out now, too, and we're both published by Gallery at Simon & Schuster. So my publicist kept talking about us, in the same breath. I'm still cracking up thinking about it. Who knew we had anything in common? (Although, my hair in the 80's was something to see...)

7. Seeing this display in the lobby of 1230 Avenue of the Americas:

(sorry, can't get photo to download onto my ipad--need tech support, aka husband. Check back on Monday)

6. The Champagne Toast. The many people at Gallery who helped bring LEFT NEGLECTED into the world gathered together yesterday with me and toasted to the book! I'm so lucky to have such a talented and devoted team behind this novel.

5. Watching the emotional response to my description of the next book, LOVE ANTHONY, after the toast. I'm on the right track!

4. Hearing that LEFT NEGLECTED debuted at #23 on the New York Times Bestseller list for hardcover fiction!

3. Hearing that LEFT NEGLECTED debuted at #5 in Canada!

2. A lovely dinner with my even lovelier agent.

1. No diapers.

Shameless Plug #1

Lisa Genova — Tue, 11 Jan 2011 13:15:00 +0000

Please buy my Mommy's book.

Launch Party!

Lisa Genova — Mon, 10 Jan 2011 15:19:00 +0000

On Thursday, Where the Sidewalk Ends (one of the two independent bookstores in my small town--we're so lucky here!) hosted a most fabulous launch party for LEFT NEGLECTED. The store was all decked out in lights, red apples, and more copies of my book than I could count! Here's a photo of the wonderful women from Where the Sidewalk Ends who made it all happen.

A special and heartfelt thank you to Joanne and Caitlin Doggart, the store's owners (the two lovely ladies to my left). I had a blast sharing this night with so many close friends, family, and enthusiastic readers from the Cape and beyond.

And when I say beyond, I'm not kidding. The highlight of the night for me was meeting Mike and his family who drove 10 hours from Canada to come to this event!

It was almost two years ago. I had only written about 50 pages of LEFT NEGLECTED when I received my first email from Mike. His sister Karyn had come across my website--and my request for help in better understanding what it's like to experience Left side Neglect. In January 2007, Mike suffered a stroke on the right side of his brain. He now lives with Left Neglect.

We talked on the phone and emailed many times. In these conversations, Mike candidly shared his Left Neglect stories with me---the challenges, his goals, his strategies for adapting, what he's lost, what he's gained, and the humor he often finds in living with this condition. I also spoke and emailed with his wife, Sue, about all the same things but from her perspective. They taught me so much about Left Neglect--far more than I could ever have learned from any of the text books.

So it was an extraordinary gift to meet Mike and his wife and sister in person on Thursday. I can't thank them enough for making the long journey to Chatham from Canada (and then back!). At one point during the evening, Mike said to me, "It's been so difficult trying to explain what I have to people. Now I can give them a copy of your book, and they'll understand."

Thank you again, Mike. It doesn't get any more rewarding that that.

Belated Happy Pub Day!

Lisa Genova — Wed, 05 Jan 2011 15:33:00 +0000

I had planned to enter my first LEFT NEGLECTED blog post yesterday, on Publication Day, but it was such a whirlwind day, I didn't have time. Well, that's not entirely true. I had plenty of time to be on Facebook--to spread the word and thank friends and family and fans for their support. And the embarrassingly compulsive/addictive behavior of checking my amazon.com rank began again, so I had time for that. But I spent most of the day going to book stores, signing stock, saying Hi and Thanks and jumping up and down with some of my favorite booksellers. I actually screamed when I saw this display at Where the Sidewalk Ends here in Chatham.

Oh, and I bought three copies of USA Today at Stop & Shop because Craig Wilson (Oh, how I love Craig Wilson!) wrote a PHENOMENAL review of LEFT NEGLECTED.

It was definitely a whirlwind day--hopefully the kickoff to a whirlwind tour! I have lots of hopes for this book. I hope it gives readers an opportunity to think about their own lives, to maybe slow down and pay more attention to what really matters to them. I hope it teaches readers a little bit about traumatic brain injury and Left Neglect. I hope it helps certain readers find NEHSA (New England Handicapped Sports Association), and I hope it changes their lives. I hope the story helps everyone to learn to ignore our cell phones in our cars. And mostly, I hope you all like it!

I did have a little time last night before bed to enter this post. But instead I drank a glass of wine with my husband and played Connect Four with my 10-year-old daughter and 3-year-old son. I think Sarah Nickerson would approve!

The Valley of the Baby Dolls

Lisa Genova — Wed, 01 Dec 2010 16:38:00 +0000

I recently read ‘DANCING WITH ROSE: Finding Life in the Land of Alzheimer’s’ by Lauren Kessler. In it, she reveals the inner life of an Alzheimer’s care facility. I liked so much about this book but want to share one part in particular for now.

Early on in her job at the care facility, Kessler tells us about a group of ‘doll mothers.’

“One lady is sitting in the rocking chair, rocking her doll back and forth, back and forth, her eyes half-closed, her lips upturned in a half-smile. She has that dreamy look mothers have when they rock their babies. At one of the dining room tables sit Billie and two other doll mothers, all holding their swaddled babies to their chests.”

She goes on to describe both the residents and the workers fussing over the dolls, everyone playing along as if the dolls were real babies.

My grandmother who had Alzheimer’s did this. She used to sit on her couch and hug them and coo at them. I think there were two dolls. I vaguely remember a stuffed bear named Henry as well, but it was the dolls she loved and mothered. I remember hearing her tell them how beautiful they were.

The first time I saw my grandmother doing this, it scared me. This was my grandmother who’d raised nine real babies now taking great care to swaddle a plastic doll. I looked to my Aunt Mary, my grandmother’s primary caregiver, for some explanation or reassurance that this behavior was somehow ‘normal’. She just looked back at me and said, “Shoot me when.”

My grandmother’s relationship with these doll babies went on for a long time. I never got used to it. What was going on inside her head? Did she honestly believe they were real babies? Was she just pretending? Did she think they were her babies or was she babysitting? By mothering and comforting these dolls, was she somehow feeling mothered and comforted herself?

I never asked her. I felt too embarrassed, too unnerved. I don’t know why they made her happy, but I know they did. Has anyone else seen this happen? Does it only happen with women with Alzheimer’s? What do you think is going on?

What Rich Hopes For

Lisa Genova — Wed, 24 Nov 2010 16:52:00 +0000

In the picture I’d seen of Rich on the internet prior to meeting him, he has short brown hair and a full beard covering his face. He’s wearing a white T-shirt under a denim blue, button-down shirt. He is not smiling. He looks menacing. It occurs to me that the photograph could pass for a police mug shot!

In person, he appears nothing like this unflattering picture of him on the internet. Rich is blond and smiles with blue eyes that are kind and sparkle. His face is clean-shaven, smooth and pink, the kind of gentle face my grandmother would’ve unabashedly approached and patted on both cheeks while saying, “Aren’t you handsome?” He looks at least a decade younger than his online picture and even younger than he is. Rich is fifty years old. He has Alzheimer's.

I learn that Rich has a masters degree in journalism and was the managing editor at a major newspaper for four years when his first symptoms began. It had been his job to assign stories to writers and photographers and edit stories. He made sure everything came together. He was highly competent and loved his job. He loved the written word.

Suddenly and inexplicably, Rich became tired, the kind of abnormal tired that sleep could not restore.

“My job typically needed me twelve hours a day, six to seven days a week. I’d go to work and last at my desk for ten minutes.”

He was diagnosed with Chronic Fatigue Syndrome. He could no longer work. Everything stopped.

“I know fatigue is a part of Alzheimer’s disease, and I know this disease is very strange and shows up differently for different people. But I still don’t know if the fatigue was due to Alzheimer’s or something else.”

His next symptom didn’t fall under the classic heading of ‘forgetting’ either.

“I started experiencing auditory hallucinations. These are very disturbing. I’d be in another room, and I’d hear the TV on, but I wouldn’t remember turning the TV on. I’d go in the other room, and the TV wasn’t on. I’d think, ‘Why am I hearing the TV?’ So I’d turn the TV on. Now I’d hear the actual TV AND the TV that I was hearing in my head.

Or I’d be listening to the stereo to a CD that I’ve been listening to for thirty years, and I know well what it sounds like. Then this harpsichord music would begin playing over it. And I’d think, ‘Well that shouldn’t be there, that doesn’t have anything to do with this!’ So I’d turn it off, so the CD music wasn’t playing anymore, but the harpsichord music was still there.”

About half of people with Alzheimer’s disease experience auditory and visual hallucinations. But Rich didn’t know this at the time.

“Then I was getting lost. I’ve pretty much lived in Los Angeles for most of my life and, I’ve been driving since I was sixteen years old. I was going to places that I’ve been to a thousand times, and I was just completely getting lost and not knowing how to get back. And again, I know this city like the back of my hand. I know it’s a complicated city, it’s not like living in a small town, but you drive Los Angeles. I went to school at USC. I know this city. And I was getting off the freeway and not knowing where I was. I was getting freaked out. My doctor just kept poo-pooing it and dismissing me. He really just didn’t listen to me.”

His doctor told him he was too old to have schizophrenia. He told him he clearly wasn’t depressed. Rich knew what he didn’t have. But he didn’t have any answers either.

So how did you get to a diagnosis of Alzheimer’s?

“My insurance changed, and I saw a new doctor and told him what had been going on. He said, ‘I don’t like the way this sounds’ and sent me for an MRI, a PET scan, and neuropsychological testing.

So I went and had the MRI and the PET and didn’t know the results. Then I went for the neuropsych testing which was eight hours a day for two days, and it actually spilled over, so it was probably a little more. It was exhausting. This may sound funny, but while I was taking the test, I was blowing it, but I didn’t know it. And she (the woman who administered the test) didn’t give it away. She just kept saying, ‘Good! Great!’ Encouraged by this, I would continue reading passages and answering questions. I thought I was acing the test! I wasn’t aware of this at the time, but she had me read at the twelfth grade level, and I got all the answers wrong. And she just kept moving down—eleventh grade, tenth grade, nineth, eighth, seventh. She stopped when I could finally answer some of the questions right, somewhere at grade school level. I was completely unaware that I wasn’t getting them all right.

At the end of the last day of testing, she had her report and my doctor had the scan results, and we all had the conversation. The MRI was clean, but the PET scan showed atrophy and hypoperfusion in the frontal, temporal, and parietal lobes. And all the mistakes I’d made in the neuropsych tests made sense in terms of where the deficits were on my PET scan. The doctor told me I had Alzheimer’s disease.”

What did hearing those two words do to you?

“I was really devastated. This was never on my radar at all. I was thinking brain tumor. Not that I wanted one, of course, but that’s what I was thinking.”

How did your life change after diagnosis?

“Emotionally, I went to a very dark place. I don’t talk about this too much, but I really did consider suicide. My mind went to where most people’s minds go when they think of Alzheimer’s. I kept thinking of lying in a bed somewhere, and I didn’t want to. So I thought, ‘Why not just cut to the end now?’ For about two months, I was in really bad despair. Then I talked with Michelle (the Director of Programs at the Los Angeles Chapter of the Alzheimer’s Assocation). She spent a couple of hours with me and listened to me and referred me to an early stage support group. That was really the turning point for me, having a place to connect with other people. That very first support group, I met Jay, and we went to lunch. We just have this connection, that kind of bond with someone where you’re able to talk openly about what you’re going through.”

Through his support group in Los Angeles, through online support groups, and through the Early Stage Advisory Panel for the National Alzheimer’s Association, Rich has forged many new and intimate relationships with others who have young onset Alzheimer’s. Finding others navigating similar waters gave Rich what he needed—real life examples of people living with Alzheimer’s. Not lying in a bed somewhere.

How did your existing relationships change after diagnosis?

“The person who has known me the longest has had a really hard time with this. She kept saying, ‘You don’t have this. Don’t say it. They’re wrong.’ Whatever process I had to go through to accept my diagnosis, get beyond my own denial, and deal with it, it was painful. But I went through it, and I accept my diagnosis. I want to tell people like her, ‘Don’t make me try to convince you for fifteen minutes that I have Alzheimer’s!’ But I have to go through that with people. With this one friend of mine, I had to keep going through this with her. She just wouldn’t believe me.

Then, I’ll tell her a story about me forgetting something that could never be mistaken for normal, and she’ll go to the other guardrail. Now she’ll say, “You can’t live at home alone anymore! You can’t be taking care of your mother! You need to sell your house!” Suddenly, I’m completely incompetent. And before that it was all, ‘There’s absolutely nothing wrong with you’ over and over. There’s no gray area. It’s just either or.”

I think this is a hard thing for people who aren’t familiar with Alzheimer’s Disease to understand, that it isn’t zero to end stage. When you were first diagnosed, your thoughts went straight to being in the fetal position in a bed somewhere, right?

“Right. I’ve learned differently.”

Tell me what a good day is for you.

“A good day is going to my support group, meeting with friends, staying connected with people. I like reading the New York Times. It makes me feel connected to the world. But when I read the newspaper now, it takes me so long to read it. I’ll read an article and two minutes later have no comprehension of it. So I’ll have to read it again and again and again. It’s really frustrating, especially because of what I used to do for a living. I used to not only read stories but edit them and make them better. So it’s really disconcerting to me. Audiobooks are somewhat easier. I sometimes put things on my iPod and listen to them. I sometimes have better recall aurally. And if I like something, I’ll put it on again. And it’s almost as if I haven’t heard it before. That can be nice because it’s like experiencing something all brand new.”

What did you hope for your future before Alzheimer’s disease?

“My dream was to live in New York and work as a journalist for the New York Times.”

What do you hope for now?

“A cure.”

What’s Your Motto?

Lisa Genova — Sun, 24 Oct 2010 15:47:00 +0000

Back when I was doing a lot of pre-publication interviews for STILL ALICE, I was asked, “What’s your motto?” I had to think for a minute, and then I said,

“Say YES whenever possible.”

I’d never been forced to put this idea into words before, but I do believe in this philosophy, and it guides me a lot in my life. Since that interview, I’ve started thinking more about mottos and how they can influence how we choose to live.

I asked my friends who have dementia what their mottos are, and I’ve posted them here. If you have a motto, a life lesson, or advice you’d like to share, please feel free to add a comment here, and I’ll add it to the list.

What is YOUR motto?

At the time I started on my journey of getting a diagnosis, I heard this song by Tim McGraw, Live Like You Were Dying. This song and  the words have the meaning of the rest of my life. I am really trying  to “live like I was dying.”
–Edye

My earlier mottos have lost much of their relevance for me, but the one that has come to be the most dear to me is from an ad in a yoga magazine in 2002 . It’s pretty tattered by now. It is a pen & ink drawing of a Buddha on a surfboard on a huge snake of eternity and the motto is: “In the face of eternity….Style” Which to me means: Don’t go out with a whimper. Savor every moment! Ride the wave of life into the beyond!
–Jaye Lander, 62 this month, Early Onset Alzheimer’s Disease

I keep this with me as I  advocate:   “Change happens when ordinary people see extraordinary people, get to know  them and see what they can do.”   (as read in The Vancouver Sun newspaper, May 31, 2008)
–Jim

I have three mottos that I go by. The first two are quotes by Helen Keller:   ”Alone we can do so little; together we can do so much”  and  ”Life is a daring adventure or nothing.” Then my personal one is: Keep on keeping on!
–Lynn Jackson

“You are mostly measured in life by how you deal with your losses and reversals. Handle them with grace placing positive spin on them.” This is my working motto/theme. I am a 72 year old retired trial lawyer who is Alzheimer’s Afflicted. I was diagnosed 2 years ago in Early Stage. I am working hard at staying here for as long as I can. My intent while here is to make a difference advocating for economy in patient long term care and letting anyone interested know it is not nearly as bad having it as worrying about getting it.
–Mike Donohue

“I don’t have time to worry about what I can’t do — I’m too busy enjoying what I can do.”
And
“Nothing I’ve seen since is as scary as the bombs falling on the farm in WWII when I was a little girl.”
–Jenny

Live in the moment — life’s too short to worry about the future. Enjoy every day you have.
–Kris Bakowski, Early stage Alzheimer’s, 53 years old.

My favorite motto is: “Act enthusiastic & you’ll be enthusiastic.” It has been my favorite for many years and still applies. Guess it’s sort of like “fake it until you make it.” I also believe our ultimate purpose in life is to help others.
–Sharon in KS, diagnosed with FTD in 2/2007 & changed to MCI in 9/2008

“I’m living my life like there’s no tomorrow.”
And that boils down to spending as much time as possible with my family and friends, and doing as much music as time allows.
–Jay

I would like to share Kris’ motto “Live in the moment — life’s too short to worry about the future. Enjoy every day you have”
and include “Don’t worry. Worry alone will not improve the out come. Be happy. Seek happiness”
–Darryl White – from the frozen tundra of Wisconsin

” Whatever you can do, or dream you can, begin it. Boldness has genius, power and magic in it.” Goethe.
–Chuck Jackson

Treatment Without Numbers

Lisa Genova — Fri, 24 Sep 2010 15:39:00 +0000

I know a widely-respected neurologist at a prestigious, teaching hospital who once said,

“Treating dementia is like rearranging the chairs on the deck of the Titanic.”

And he’s not alone in the medical community with this philosophy. I’ve heard many stories of doctors, both neurologists and general practice physicians, who are reluctant to prescribe treatment for Alzheimer’s Disease. They believe that the current drugs available don’t make a difference. They believe the current drugs are not cost effective.

Aricept and Namenda do not cure Alzheimer’s.
They do not stop the progression of the disease.
The cognitive capabilities of everyone who has Alzheimer’s Disease will get worse despite taking these medications.
No one gets out of Alzheimer’s alive.

But what about quality of life? What about the value of making each day a little less foggy, less frustrating, less isolated, less stressful for as long as possible? What about living as fully as possible with whatever time you have?

Do doctors not bother to prescribe calcium channel blockers or statins to elderly patients with heart disease because they’re likely going to die soon anyway? Are patients with cancer denied surgery, chemotherapy, or radiation if it’s known that these treatments will only buy time before the cancer ultimately kills them?

In the diagnosis and treatment of any patient, doctors have been trained to measure and quantify. Cholesterol levels are measured. There is a number. Blood pressure is taken. There’s another number. Patients are given medication, and doctors look to these numbers to evaluate whether the treatment is working. The number changed. The treatment worked.

There is no dementia protein that can be measured in the blood. There is often nothing visible in a brain scan. There is no number physicians can point to that can measure discrete changes in cognition. A doctor can’t put a patient with Alzheimer’s on Aricept or Namenda and then in six months say, “Things look great. We see a 25% decline in the accumulation of amyloid beta in your brain.” Or, “Wonderful. Your glutamatergic neurotransmission is up significantly.”

But just because there’s no numerical index of biological improvement that can currently be measured, it doesn’t mean the improvement isn’t there.

We’re all on the Titanic. We’re all going to die. For those of you with Alzheimer’s disease who are taking an Acetylcholinesterase Inhibitor (Aricept, Exelon, Reminyl) and/or Namenda, do you feel like you’re just pointlessly rearranging the deck chairs?

Tell us what you notice about your capabilities and mental health while on these medications. What value do these drugs have for you? Caregivers, tell us what you notice.

What do we know without knowing any numbers?

Life Lessons from the Dementia Care Conference

Lisa Genova — Tue, 24 Aug 2010 15:36:00 +0000

I attended the annual Dementia Care Conference in Chicago back in the summer of 2007. I was there to promote my then self-published novel, STILL ALICE, and to meet with and interview six people with early-onset Alzheimer’s Disease. Two of the six I’d already become good friends with over the past year. I knew the others more recently and less intimately. But I knew all of them only virtually, through emails and phone calls, and I couldn’t wait to know these friends of mine in three dimensions and in real time.

Early-onset Alzheimer’s is Alzheimer’s before the age of 65. My friends here are all young, in their forties, fifties, and sixties. They are all also in the early stages of Alzheimer’s, so they are still able to articulate their stories. I sat with each person and asked questions aimed at understanding what it is like to live with Alzheimer’s Disease. We talked about the things you might expect, about the dramatic changes that this disease precipitates—the abrupt end to fast-paced, high-powered, personally-fulfilling careers, a shift in or relinquishing of certain responsibilities at home, and planning for a new kind of future, one they never had imagined having to age into. We talked about loss of status, loss of friendships, anger, and denial.

But then, each and every person told me about the significant ways in which they are truly and deeply happy and at peace in their lives. Even now, I hesitate typing these words. I don’t want to oversimplify or minimize. I don’t mean to romanticize this disease. This disease is dark and brutal and rips apart neurons and relationships and dreams for the future. Maybe this is surprising to hear, but there was very little talk in these conversations of doom and gloom, heartbreaking sadness, the grim reaper lurking in the shadows behind us. What I witnessed, without exception and over and over, was a joy and gratitude for life.

I saw a mental calmness and clarity, not despair or emptiness. These individuals are highly focused on the stuff that matters and undistracted by the stuff that doesn’t. They have a laugh-out-loud sense of humor about their disease. They have a strong sense of purpose and spirituality and connection to God. They are all extremely present in their lives, available to their families and loved ones and unafraid of expressing their love for them. They are all exercising and eating healthy diets. They are all living fully in the moment, these friends of mine with Alzheimer’s Disease. I felt relaxed, happy, and inspired talking with them.

They and I realize that this is all for now. For now, Alzheimer’s is a story without a happy ending. For now, this disease eventually laughs in the face of Aricept and kicks Namenda aside as it marches on its path of destruction. But for now, Aricept and Namenda are holding their ground enough. For now, my friends with Alzheimer’s are able to actively participate in life, to advocate for people with Alzheimer’s, to enjoy their families and friends and what is beautiful in the world around them, and to love fully. And they do.

Finding Your Kaleidoscopes

Lisa Genova — Thu, 24 Jun 2010 15:40:00 +0000

You’re at a party in the middle of telling a story about your favorite childhood toy, but you can’t for the life of you come up with its name.

“Oh, what’s it called?” you ask yourself as you rummage around in your brain.

This classic tip-of-the-tongue phenomenon is something most people experience occasionally. For some usually frustrating period of time, a word that is stored in long-term memory refuses to be grabbed and recalled. Most people know they know it and have access to some aspect of the target word while in this state, like its meaning, the first letter, or the number of syllables.

“I know it begins with the letter K.”

Eventually, either through concentrated effort, bumping into the right associations, or when no longer consciously focusing on hunting it down, the word magically surfaces.

“Kaleidoscope!”

The average twenty-five-year-old experiences one to two tip-of-the-tongues a week. And the frequency of this normal phenomenon does increase with age. But for someone with Alzheimer’s, missing words interfere far more often and typically don’t offer helpful clues. These missing words aren’t so much on the tip of the tongue, ready to spit themselves out. They’re hiding somewhere deep in the brain. For someone with Alzheimer’s, this difficulty with recalling the names of everyday names and objects is called “anomia.”

Here’s where the concept of ‘exercising your brain’ or cognitive retraining can be extremely helpful. If you’re experiencing anomia and having trouble getting to the word KALEIDOSCOPE because amyloid beta goo is blocking the main roads to it, then having other, goo-free roads that lead to KALEIDOSCOPE can help you.

If you only have two neurons that have learned to connect to the word KALEIDOSCOPE and those two connections become jammed, then the word is inaccessible. Forgotten. But if you have ten neurons that have made connections to the word KALEIDOSCOPE, then those two gooey pathways can be detoured. The main roads that had always been the quickest routes are blocked, so it may take a longer time to retrieve the word, but you can still get there.

So the more connective neural roads you build to a piece of information, the more likely it is that you’ll still be able to get to that piece of information as some of your roads become impassable.

“Childhood toy” is blocked.
“Tube containing mirrors and pieces of colored glass or paper” is blocked.
Beatles song, Lucy in the Sky with Diamonds, Girl with the eyes:

“Kaleidoscope!”

Talking with James

Lisa Genova — Mon, 24 May 2010 15:59:00 +0000

A couple of years ago, I sat down and talked with my friend James about his life before Alzheimer’s.

James used to be the Director of IT for a Fortune 500 company. At any given time, he was responsible for twenty-five to thirty projects on a global basis, he received over a hundred emails daily that required responses, he attended six to ten meetings each day, and he worked anywhere from sixty-five to one-hundred hours each week. He likened his job to the corporate version of an air traffic controller. A self-proclaimed adrenaline junkie, he thrived in this kind of intense environment and was consistently ranked in the top ten percent of their 70,000-person workforce.

He rattled off descriptions of his work life with effortless enthusiasm. He told me that it was a really exciting time in his life, that his work was great and fabulous and that he loved it. I was undoubtedly convinced.

And then his Alzheimer’s symptoms began to surface. James’ first and most salient symptom was exactly what we all think of when we think of Alzheimer’s Disease –forgetting. But James was only 43 years old at the time. Forgetting doesn’t wave its arms and scream Alzheimer’s at the age of 43. Both James and his primary care doctor blamed his high-pressured job. He needed to slow down. Relax. His doctor thought he might be depressed. James didn’t think so. He had a lot of energy, and aside from forgetting things, he felt like himself. But he trusted his doctor and went on Wellbutrin.

The forgetting continued.

What kinds of things was James forgetting? He forgot to go to meetings, that there ever was a meeting, that it was he who’d actually called the meeting, people’s names, people he’d known for years, where he’d placed needed documents.

What did this forgetting feel like?

“I think of my mind as a desk, and all the papers on it are my memories, all the things I’m keeping track of. It’s as if someone sneaks up when I’m not looking and takes random pieces of paper off my desk. When I turn back around and look, it’s as if those pieces of paper never existed. I won’t even realize they’re gone until whatever they’re needed for comes up. Then I’ll have no idea where they are. They’re gone. That’s what was happening with my memories. I wouldn’t realize my memories were gone, and I would maybe even argue that they weren’t gone until they were needed, and then I wouldn’t have anything to draw on.

I also lost my ability to multitask. When you multitask, you keep information in place holders in your mind. You’re using your short-term memory. I think of it like an air traffic controller, keeping track of where all the planes are all the time. Even when you’re focusing on one particular plane, you have to keep the other planes in mind. Part of what made me successful as a director was my ability to work on twenty-five to thirty projects at once. I was losing sight of meetings, documents, conversations, the existence of entire projects.”

His planes were starting to collide, wander off the radar screen, and hit the ground.

“I also lost my sense of time. Two hours would feel like twenty minutes.”

This is also a symptom of forgetting. The way we perceive the passage of time requires the ability to string together memories of what happened between a time ‘then’ and another time ‘now.’ If memories are missing, stolen off the mental desk, this tends to shrink that time period.

With all this forgetting at a job that required a high level of remembering, James was beginning to fail at work. I wondered if maybe home life, where he didn’t have the same kinds of multitasking demands placed on him, was more forgiving.

What was happening at home?

“I would get home and be just exhausted. I’d hardly be able to speak because I was so tired. I think it was because my mind was working so hard to get through the day at work, that by the time I got home, my mind literally had nothing left. I would sit there and be blank for a while. It had to be frustrating for my wife, to see me spending all my energy and passion at work and having nothing left at home. That was really difficult on my family, wondering why Dad’s disengaged, why Dad doesn’t want to do anything. To them, it probably looked like depression. But it turns out it was something else.”

After an arduous journey through a series of medical tests that excluded every other possible known cause of forgetting, James was ultimately diagnosed with “the only rock left on the table.” Alzheimer’s Disease. James was forty-five years old.

Happy Valentine’s: A Love Story

Lisa Genova — Sun, 14 Feb 2010 16:41:00 +0000

John and Mary have been married for fifty-three years. Mary has Alzheimer’s Disease and lives in an Alzheimer’s Care Facility. John visits her every day. Every day, Mary does not know who he is.

Today is Valentine’s Day. He thinks about how much he loves his wife, about all she has meant to him, about all they’ve shared together over fifty-three years. When he visits her today, he brings her a rose and a box of her favorite chocolates.

As he offers his gifts to her, he says, “Happy Valentine’s Day, sweetie.”

She accepts the lovely rose and her favorite chocolates with polite pleasure.

He then says, “I love you, Mary.” And he tries to give her the gentlest kiss.

She swats at him and screams.

“Mary, I’m your husband. I’m John, your husband.”

Mary looks repulsed and scared and would get up out of her chair and run out of the room if she could.

“Get out!” she yells and covers her face with her hands.

“I love you, Mary. I’m your husband, John. Look at me, I love you.”

He tries to take one of her hands away from her face and hold it in his. She used to love holding his hand.

Mary squeezes her eyes shut and screams, “Help me! Somebody help me!”

After an aide comes in and settles Mary down, John leaves, heartbroken that he can’t spend meaningful time with his beloved wife on Valentine’s Day.

John can still have meaningful time with Mary. But he has to give up his old relationship with her in order to have a new one. The parts of Mary’s brain where John lived, the parts that housed Mary’s memories of the last fifty-three years, are either not working or are missing. Think about that. She has no memory of being diagnosed with Alzheimer’s, no memory of John, of being his wife, of being sixty, fifty, forty, or thirty years old. This information simply does not exist in her brain. Like it is for all of us, her truth, her reality, is based on the information she does have in her brain.

To Mary, she is only twenty-five years old. She knows no information beyond that. That is her truth. Imagine being twenty-five years old, and an eighty-year-old man you don’t recognize insists that he’s your husband, that he loves you and wants to kiss you. You’d fight him off, too!

John has to give up on being right and the truth according to his bigger brain and work with the truth as Mary lives it. He should not insist that he is her husband. To her, he is an old man, someone’s grandfather, and she is a young woman. He has to find a new relationship—

She has a beautiful smile. It reminds him of his granddaughter’s who lives far away. Would she mind if he visits with her for a while?

Where is she from? Well how about that! They’re from the same home town and can spend time reminiscing about life there.

He has a box of chocolates. Her favorite. Would she like one?

And go from there.

It’s All In How You Hold It

Lisa Genova — Wed, 06 May 2009 02:31:00 +0000

Two years ago, I had a conversation with my friend, Jay, that changed my life. Here is some of what we talked about.

I asked him, What did it feel like to hear those three words---You Have Alzheimer’s?

“We (he and his wife) never really did have a moment of denial. I’d accepted the Alzheimer’s Disease diagnosis when the doctor put me on Aricept. That was the time of shock and relief. Finally, we have an answer. We never thought of Alzheimer’s, but it was great to know that it’s not something mysterious anymore. It’s just this thing that five million other Americans have.”

When Jay and his wife left his doctor’s office, they went straight to a bookstore to learn more about Alzheimer’s Disease. They bought The Forgetting (Shenk), Alzheimer’s Early Stages (Kuhn), and Alzheimer’s for Dummies. They learned about the symptoms and stages, living with the disease, and planning for the future. He took the medications prescribed by his physician. But something in Jay urged him to learn and do more.

Armed with a diagnosis, they attended to a mind-body retreat, where Jay began to discover new parts of himself, unused by Jay the architect, undamaged by Jay the man with Alzheimer’s.

He ate vegan meals rich in anti-oxidants and learned about natural healing. He began exercising.

“Every morning at the retreat, we did exercises focused on strength and balance and getting the lymph system moving. Aerobic exercise is the number one thing you can do for your health, your brain, and the growth of your brain.”

He started reading more, but not about Alzheimer’s Disease. He tells me that I absolutely have to read Eckhart Tolle, Deepak Choprah, Jon Kabat-Zinn, Stephen Levine, Gary Zukav.

“I’ve been spending a lot of time and attention on books about consciousness and healing. This is the real deal about who we really are, the stuff they never taught you in school. I’m taking it all in as fast as I can without getting in a hurry and falling over myself.”

Jay is looking at me now, his eyes alive and bright, his voice louder and sure of itself. He’s excited about all this, and his mood infects me easily. I perk up.

Look at all you’re discovering.

“I’ve taken my life back. I’m happy. I’ve never been happier. I’ve been spending a lot of time on self-awareness, discovery, and actualization through meditation. I never meditated before this disease. I’m starting to get it down. In the last year, I’ve been actively involved in an intensive meditation group that meets weekly, and the miracles that have been happening since I’ve started doing it have been just amazing.”

I’m nothing short of awed by Jay’s transformation. Here’s a man who has been diagnosed with a disease synonymous with death, but the man before me, in this present moment, is not a dying man.

“My main avocation has always been music. I’m in a folk string group, and I’d always played the banjo and guitar. Recently, my friends in the group encouraged me to try mandolin, so for a few years now I’m becoming a serious mandolin player.”

Wow, Jay, that’s so impressive. You realize that you have a disease that makes it difficult to learn new tasks.

“Yes, but that’s exactly what you need to do! It’s like doing my Sudoko every morning. Learning a new song, a new skill, challenging the grey matter and forging new pathways. And music also gives me a connection to the people I play with. My wife and I have been in a community chorus for years. It’s a great outlet for self-expression and creativity..”

Jay, what you’re doing is incredible. You know, most people can’t imagine you. When most people think of Alzheimer’s, they see end stage. They skip immediately from diagnosis to deathbed.

“For the first time in my life, I’ve got nothing to lose. It’s liberating. It’s real clear to me. Our priority is living the good years we have left. We know the shape of the end of this thing, but we still have a lot of living to do. Right after diagnosis, I began attending a guitar/mandolin camp, including a couples weekend with my wife, and I’ve already signed us up for next year’s mandolin camp and couples’ weekend. And I bought a new car, even though I may not be able to drive much longer.

I’ve come to see the importance acceptance and accommodation—accepting the diagnosis and all its implications, and learning to adjust and accommodate to the limitations it imposes—and then refocusing and reprioritizing my life to my newly rediscovered core values. Anyone can discover their own. Mine are family, creativity, life-long learning, service to community.”

A man with a video camera is hovering a few feet away. I look down at my watch. My time with Jay is about up. He has an interview with some folks from HBO next. I wish I we had more time together. I’m learning, inspired. I like him. He knows who he is and what he’s about. It’s magnetic. I want to be in the presence of his peace and excitement for life. I don’t know many people in this world who have what Jay has found with Alzheimer’s.

“A brilliant young professor left me, over 50 years ago, with 'it’s all in how you hold it.' For me, after all of this, it all boils down to living my life like there’s no tomorrow, while conducting myself and treating my body-mind-spirit in such as way as to maximize the number of tomorrows that I’ll have available.”

IndieReader.com

Lisa Genova — Thu, 23 Apr 2009 21:18:00 +0000

As a formerly self-published author, I can't help but keep my eyes and ears open for great, new tools for the guerrilla marketing writer. Here's a new and exciting website being launched soon to help self-published authors gain better visibility.

www.IndieReader.com aims to give self-published/POD (aka Indie) books an interactive and buzz-worthy platform, a place where they're not treated like second-class citizens because they're self-published. Authors at IndieReader will get increased visibility (the site's founder has 20+ years in PR), a sales venue, and a website page with their own URL.

"Just as Sundance has done for Indie films, IndieReader.com's mission is to promote and legitimize independent books and authors," says founder Amy Holman Edelman.

The site is slated to go live on June 1st.

So, if you're a self-published author, get on Facebook and GoodReads, check out AuthorZoom.com, and see if IndieReader.com can help readers find your book.

Further info and a look at the Home and Author pages can be found at www.indiereader.com.

Where I Write

Lisa Genova — Mon, 02 Mar 2009 18:26:00 +0000

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 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 two kids (8 and 1). 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 the 1 yr old doesn’t sleep through the night, and write. You can’t even daydream there for long without looking like a nut. I wrote Still Alice 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.

Can You Offer Me Some Advice on Self-publishing?

Lisa Genova — Thu, 29 Jan 2009 03:35:00 +0000

Yes, I can. I should say first that this is not a math equation. One plus two doesn’t necessarily equal three. There are no guarantees here. You can do everything I did and not get a publishing deal. But I hope you do!

It’s important to know that a self-published book was not my goal. I self-published because I couldn’t make any headway on the conventional road to a book deal. My self-publishing goal was to demonstrate that Still Alice had an enthusiastic and sizeable audience. I wanted to give my book a chance to wave its arms in the air and yell at the top of its lungs, to create a buzz loud enough for the literary agents and publishing houses to hear. And at the end of my self-published day, I still wanted a book deal from a traditional publishing house.

So with that goal, in 2007, I paid iUniverse to publish my novel. I required no editing, no book cover design (thanks to my talented husband), and no marketing. They offer all of these services and more, but I had either already done these things or was willing to do them myself. I simply needed them to print the book.

iUniverse is a print-on-demand company, which means they only print books that are ordered by customers. There are no stockpiles in warehouses, which is why it doesn’t cost the author an arm and a leg. There are other self-publishing companies out there, but I didn’t use them, so I can’t speak with any insight as to their pros and cons.

Since STILL ALICE was not going to be carried in physical bookstores outside my local area, it was crucial to have it available for purchase online. iUniverse made Still Alice available for sale at a lot of websites, like Amazon and Barnes & Noble.

I should also say that iUniverse did a great job producing a professional-looking, quality book. One reader, while holding the book in his hand and learning that it was self-published, said, “But it looks like a real book!”

So now I had a “real” book. Now what? iUniverse allows you to purchase copies of your own book at a discount. The % off retail increases as you buy more. Always have one with you. You never know who you’re going to bump into!

Get a website. Network online. Write your own press release and post it for free at www.pr.com. Become viral.

If you can start to feel the vibration of a buzz and you have the money, you might want to consider hiring a book publicist to assist you in your efforts.

After being self-published for ten months, I found an agent who sold the book to Pocket Books. The Pocket Books edition of Still Alice came out on January 6, 2009. Barnes & Noble sold more in the first two days than I sold in ten months. And in its first week, it debuted at #5 on the New York Times Bestseller List.

Brunonia Barry did it with The Lace Reader. Julia Fox Garrison did it with Don’t Leave Me This Way. I did it with Still Alice. It can be done.

Say yes whenever possible. Be tenacious. This is likely to be a marathon, not a sprint. Be sincerely grateful to everyone who helps you on your journey, because it will take a village to raise a self-published book. And remember to enjoy it all!

I hope this helps, and I wish you good luck!

Aricept AND Namenda

Lisa Genova — Wed, 15 Oct 2008 00:34:00 +0000

Why take medication for Alzheimer's when they don't work?

I've heard this question too many times to count. My answer has always been anecdotal, second-hand:

But they do!

Finally, we have a scientific answer confirming what I've scientifically suspected and personally witnessed. Dr. Alireza Atri and his colleagues at Massachusetts General Hospital published the first long-term study of the real-world use of cholinesterase inhibitors, like Aricept, and Namenda in the July/September issue of Alzheimer Disease and Associated Disorders. They found that patients taking BOTH Aricept and Namenda declined less than patients taking only Aricept and even less than patients taking no medication.

Did these patients still decline? Yes.

Is this combination therapy a cure? No.

If you have Alzheimer's, is it worth getting on BOTH medications as soon as possible? According to the results of this study and what my friend Bill says, Yes.

Bill: My doctor referred me to a psychiatrist, and he immediately put me on Aricept and Nameda.

Me: How did he figure out you had Alzheimer’s?

Bill: He didn’t. He said to me, ‘I’m going to do one thing. You’ve been working on this thing for four months. Your doctor doesn’t know what it is. I have no idea what it is. But I’m going to put you on two medications. If in fact you have Alzheimer’s, and we confirm that a year from now, because it’ll take that long, you’ll have already been on the medication. If we don’t put you on the medication, you’ll have lost all of that cognitive ability, and you’ll never get it back.

It’s different today, with the medications we have. When my Dad had this, when they finally found out what was going on, it was, Make him as comfortable as you can. There were no ways of medically caring for these people then. If anything, they were sedated, to make them less…less…less…ahh”

Me: Agitated?

My stomach sinks as soon as I hear myself offer the word, and I hold my breath. Whenever I encounter someone with Alzheimer’s struggling to find a word, I have to work to keep myself from becoming an enthusiastic guesser in a game of Charades. My instinct is to jump in and make a stab at it. But if the word I suggest isn’t the right word, then my interruption might derail his train of thought entirely. Luckily, I picked the right one.

Bill: Yes, thanks, agitated. He said to me, ‘You’re just too young to give up on.’ So what this doctor did in good faith, putting me on these two medications, turned out to be a God send for us. And I don’t think that’s happenstance. I think things work for a purpose. It took me about eight months to get in to see the neurologist I needed to see. I took the neuropsych testing twice, for two days. That confirmed it.

Me: What went through your head when you were told you had Alzheimer’s Disease?

Bill: I was relieved. I’d been searching for so long. What started out as a four-month journey turned out to be an eighteen-month odyssey. I was relieved. I’ve never been angry, never been afraid. Now there are people who are angry, who are in denial, who are frustrated and feel a stigma associated with it. There are many people in my support group who are angry. Anger, in denial, frustrated, scared. I am none of those. I’ll be the first one out saying I’ve got Alzheimer’s. It is a disease I have. It is not who I am.

Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com

Remembering the Spoons

Lisa Genova — Wed, 03 Sep 2008 00:35:00 +0000

I've lived in Chatham for a year now. Recently, my husband and I looked around and marveled at all we've accomplished in one year. The walls are painted, the wild and overgrown yard is somewhat tamed, the rooms are invitingly furnished, and oh yeah, we had a baby. Thinking back to last summer, I remembered how unsettled and exhausted I felt. Everything had to find its home before I could feel at home. Thinking about this, I remembered my blog post from last year about the spoons and smiled. I've come a long way in a year. I feel at home in my home now. And I can always find the spoons...

Last year:

It takes me three tries to find the silverware drawer. I hand my seven-year-old daughter a spoon. She finishes her cereal, brushes her teeth, and we’re ready to go.

I can’t remember where I put my shoes. When searching for them, I spot my daughter’s library books that I forgot to return. Again.

After I locate my shoes, I’m finally ready to leave the house but then realize that I don’t have my sunglasses. I walk in and out of every room, hunting, desperate, mad at myself. Unsuccessful, I resign myself to spending the rest of the bright, summer day squinting when my daughter announces, “Mom, they’re on your head.”

I don’t have Alzheimer’s. I’m thirty-six years old, pregnant, and just moved into a new house in a new town. I’m tired from the move and the pregnancy and keeping up with the ceaseless needs of my life and family. And everything here is still unfamiliar.

In the old house, the silverware was kept in the drawer next to the refrigerator. Here, it is to the right of the sink. In the old house, we kicked off our shoes by the front door. Now, the front hallway is littered with towers of boxes, so our shoes end up somewhere else. My routine has been disrupted, and the mental map of where I live is under construction.

It’s no wonder I’m forgetting things. What a relief it is to know that this is normal and temporary, that once we’re moved in, once we get used to life here, once I have the baby (okay, when the baby turns four), then I’ll grab a spoon every time I reach for one and without even consciously thinking about it.

I can’t imagine what it must be like to have Alzheimer’s Disease---to experience these types of maddening lapses in cognition AND to know they will only keep happening and get worse. It must be more than frustrating and exhausting. It must be terrifying.

I think about how quick I was to give up on finding my sunglasses and do without them, and I wonder how readily people with dementia decide not to bother, to give up looking for the keys, that word, that thing.

Imagine if I’d moved AND had Alzheimer’s. This is precisely what happens in many families. Living alone becomes too dangerous for a grandmother, father, or aunt with Alzheimer’s, or the work of commuting and running two households becomes too much for caregivers living elsewhere. How difficult it must be for someone already coping with an unreliable mind to move to a new home! I’m not saying it’s wrong to have your grandmother, father, or aunt move in with you or to a care facility. I’m just saying---it must be incredibly hard to find the spoons.

Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com

To Drive or Not To Drive

Lisa Genova — Fri, 29 Aug 2008 18:02:00 +0000

Last week, someone innocently asked the DementiaUSA email group a not-so-innocent question. He asked if anyone knew how someone with dementia would go about getting a handicapped parking permit. As a person with dementia who still drives, he wants to use the handicapped spaces as a way of helping him remember where he parked his car.

Man, did he unwittingly stir the pot! The debate this question precipitated went on for days.

Here was one side:

If you can’t remember where you parked, it’s a sign that your symptoms are bad enough that you shouldn’t be driving anymore. You might not remember where you are or where you’re going and get dangerously lost. You might not remember how to operate the car or remember how much time you need to stop or to complete a turn in front of on-coming traffic and cause an accident. You might get hurt or hurt someone else, or worse, kill yourself or someone else. If you have Alzheimer’s and can’t remember where you parked your car, the solution isn’t ‘get a handicapped parking permit.’ It’s time to give up your license.

And here was the other side:

I would sometimes forget where I parked my car well before I had dementia. People without Alzheimer’s who leave a mall and can’t remember where they’d parked don’t hand over their keys. I drive slowly and cautiously and only in familiar places. I’ve never been in an accident. I only drive with my husband/wife, never alone, and he/she acts as my co-pilot.

As I was ‘lurking,’ reading without chiming in, I thought about my own recent experience losing my parked car.

Just the other day, I, a 37-year-old woman without dementia, stepped outside the grocery store, stared into the sea of mostly silver SUVs, and thought, “Now where the heck did I park?” I then spotted my car almost instantly but only because two giant kayaks, one bright orange and one bright blue, were perched high on its roof. Clearly and thankfully, forgetting where you parked isn’t criteria for giving up your driver’s license.

I was also reminded of an enlightening conversation I had almost exactly a year ago with my friend James who has young onset Alzheimer’s. Here is his perspective.

“I want to let my capabilities drive what I can do. I don’t want to hand over what I still have to this disease before it insists on taking it.

I didn’t want to give up my keys. Driving to me is one of the core things that allows you to maintain some engagement and freedom in the world, and when that’s gone, you’re dependent on the rest of the world to get you around.”

But driving with Alzheimer’s? Surely this combination is a tragedy waiting to happen, I’d thought. Alzheimer’s compromises the ability to multi-task. It causes spatial disorientation, impairs depth perception, and narrows field of vision. It’s easy to imagine the many things that could go wrong. And they do.

We see it in the news all too often. I remembered hearing about a woman from Wyoming who, at age fifty-eight and diagnosed with Alzheimer’s, got confused on her way to the airport to pick up her daughter and ended up over 650 miles from home. Police found her body about a mile from her car four days later.

The risks are real and potentially life threatening, for the driver and for others. At some point, James shouldn’t be behind the wheel. But how can James, with Alzheimer’s obscuring his ability to self-evaluate, recognize that point?

James didn’t guess, argue, or insist. He took an intensive driving exam. They tested his vision and his reaction time. They put him in video simulators. They even tested his memory. Then they put him behind the wheel. He drove on highways, side streets, through construction routes with detours, and parallel parked.

James passed the test with flying colors. He relies on this objective score to tell him whether he can continue to drive, not on the piece of paper that says he has Alzheimer’s. He has an agreement with his family that he’ll take the test every year. If the results show a decline, if he’s no longer a good candidate for driving, or if at any time anyone in his family becomes uncomfortable with his driving, he’ll give it up. And he won’t argue about it.

“But even then, I hope people will offer support. The answer isn’t ‘well now you should stay at home,’ but ‘now let’s consider some alternatives.’ Is there a bus service? What programs are available? Are there volunteers?”

So, for now, James drives with Alzheimer’s.

At the end of the heated online debate, the parties agreed to disagree. There was no consensus, no black and white, no right and wrong. Some remain drivers, others have become willing passengers.

And I remain grateful for the brightly colored kayaks on the roof of my car.

Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com

Self-Publish or Perish!

Lisa Genova — Wed, 06 Aug 2008 17:51:00 +0000

There is this saying in academic science: "Publish or perish!"

We say this because if you don't publish your results in peer-reviewed journals, you won't get the next round of funding, which means you won't have the money to do the next round of experiments, which means you're out of a job.

I no longer work at the lab bench as a neuroscientist. I haven't in ten years now. But this "publish or perish" mantra must've gotten under my skin and into my blood. It gave me just the mentality I needed to become a novelist.

Before I self-published my first novel, STILL ALICE, last summer, I tried going the traditional route. I spent a year querying literary agents. But no one wanted my book. I was sitting in a holding pattern with a completed novel and no one reading it, waiting to find out if STILL ALICE was ‘good enough,’ waiting to find out if I was a ‘real writer,’ unable to give myself permission to write the next book. This was not a fun year.

To the last agent that year who said, “No thanks,” I said, “Okay, then. I’ve had enough of this. I’m self-publishing.”

I’m so grateful I had the confidence to ignore his response:

“Don’t self-publish. You’ll kill your writing career before it begins.”

He couldn’t have been more wrong.

Instead of fearfully sticking my novel in a drawer, I moved forward. I self-published STILL ALICE, and the journey that followed and continues has been the ride of my life! I ultimately still wanted that big publishing house book deal, I just wasn't going to go the traditional route. I was in for almost a year of guerilla marketing, of putting on my armor and battling every day, trying to overcome the stigma of being a self-published author, trying to scale the wall of the publishing house castle.

I listed STILL ALICE on myspace, goodreads, shelfari, and more. I managed my own website and blog. I read David Meerman Scott's The New Rules of Marketing and PR and John Kremer's 1001 Ways to Market Your Books. I scheduled at least two book events a month: Readings and signings at local bookstores, coffee shops, Alzheimer's facilities or conferences, book clubs. And after seven months, after I'd started getting some good feedback and local press, I hired Kelley & Hall Book Publicity to join me in my efforts.

In the three months that I worked with Kelley & Hall, STILL ALICE was featured on television and radio. It was reviewed in newspapers, blogs, and at amazon.com. It was chosen for book clubs, as a staff pick at bookstores, and as a Finalist in General Fiction in the 2008 Next Generation Indie Book Awards. And it won the 2008 Bronte Prize for best love story in North America.

By nine months, things were definitely beginning to vibrate. By ten months, you could hear the BUZZ. Word of mouth and a generous introduction led me to a literary agent who loved my book and within a week of signing our contract, I was inside the castle. STILL ALICE sold at auction to Simon & Schuster for six figures! They’ve sold it to publishing houses in nine other countries with more to follow and plan to release it in the US on January 6, 2009.

Lisa Genova

Anthony’s Rocks

2011 Year in Review

Notes from Italy, 11/15/11

Notes from My LOVE ANTHONY Writing Journal, 11/30/11

Still Alice–Deleted Scene

Oh Canada!

Notes from My Writing Journal, August 29, 2011

Top 5 Reasons Ellen Should Have Me On Her Show

Building Neural Roads

Upcoming Appearances

Past appearances include everywhere from Cape Cod to Australia, from Alzheimer’s associations to independent bookstores. See all past appearances.

Interested in booking Lisa for a book or speaking event? Click here for more information, or scroll to the bottom of the page.

Sign up for email alerts for certain events.

To schedule a book event, please contact: Jean Anne Rose Director of Publicity Gallery Books 1230 Avenue of the Americas New York, New York 10020 212-698-7579 JeanAnne.Rose AT SimonandSchuster DOT com

To schedule a speaking event, please contact: Blair Bryant Nichols Director Simon & Schuster Speakers Bureau 212-647-6313-direct 646-810-5793-fax BlairN AT simonspeakers DOT com

Tantrums in Sacred Spaces

When is it Normal and When is it Alzheimer’s?

Past Appearances

2011

Still Alice, still going!

Australia Book Tour 2011: Most Memorable Moments

Christine Bryden

A Confession and Apology

Gibson’s and New England Handicapped Sports Association

South Carolina

Shameless Plug #2

Top Ten Best Things About My Trip to NYC

Shameless Plug #1

Launch Party!

Belated Happy Pub Day!

The Valley of the Baby Dolls

What Rich Hopes For

What’s Your Motto?

Treatment Without Numbers

Life Lessons from the Dementia Care Conference

Finding Your Kaleidoscopes

Talking with James

Happy Valentine’s: A Love Story

It’s All In How You Hold It

IndieReader.com

Where I Write

Can You Offer Me Some Advice on Self-publishing?

Aricept AND Namenda

Remembering the Spoons

To Drive or Not To Drive

Self-Publish or Perish!

To schedule a book event, please contact:
Jean Anne Rose
Director of Publicity
Gallery Books
1230 Avenue of the Americas
New York, New York 10020
212-698-7579
JeanAnne.Rose AT SimonandSchuster DOT com

To schedule a speaking event, please contact:
Blair Bryant Nichols
Director
Simon & Schuster Speakers Bureau
212-647-6313-direct
646-810-5793-fax
BlairN AT simonspeakers DOT com