Lisa Genova's Blog, page 6

Praise for Love Anthony

"Love Anthony broke my heart in the best way! I read it spellbound and breathless. If you don't know Lisa Genova's work already, meet your new favorite writer, storyteller, enchanter."
--Heidi W. Durrow, New York Times bestselling author of The Girl Who Fell From the Sky

"Lisa Genova has essentially created her own genre, the 'Lisa Genova' novel, in which complicated topics become accessible to readers through beautifully-drawn characters and profound, human-scale stories. Love Anthony dares to ask enormous questions, the big questions that bedevil all of us. Better yet, Genova has the wisdom to know which ones can be answered, and which cannot."
-–Laura Lippman, New York Times bestselling author of What the Dead Know

“Autism is like a Zen kōan—a riddle without answers, with effects that are myriad, mysterious, and confounding. The same could be said about love. Love Anthony upended my perceptions of both conditions, leaving me feeling with my mind and thinking with my heart. Everyone should read this book!
 --Jamie Ford, bestselling author of Hotel on the Corner of Bitter and Sweet

"Genova's deep and empathic insight once again has blown me away -particularly her intensely accurate portrayal of autism parenting. Her characters are complicated people, with unique, believable and sometimes frustrating struggles. But perhaps Genova's true mastery is in the way she never fails to give us very real people to love. "
--Susan Senator, author of Making Peace With Autism.

I can’t really talk about Jenny without including Don. Don is Jenny’s husband. And more than anyone else I’ve met with Alzheimer’s, they are in this experience together.

I meet up with Jenny and Don at a café. Around lunchtime, it’s crowded and noisy with customers. We decide we need to find a quieter and less distracting place to sit and talk. Jenny is thirsty, so Don leaves us to buy a bottled water for her before we go. He has just finished telling me that Jenny fell outside on the pavement.

Are you cut?

“What do you mean?”

Are you bleeding anywhere?

“Why?”

You just fell?

I’m unsure that I want to pursue this line of questioning. I don’t want to shine a spotlight on her Alzheimer’s like this. I don’t want to make her uncomfortable.

“I did? Is that what he said?”

Yes.

“Oh, then I must’ve. I’m fine.”

She smiles and puts me at ease. So much about Jenny strikes me as vibrant and playful and young in spirit. She’s wearing a hot pink shirt and crocs. Her gray hair is pulled back tight into a high ponytail. Even her name, Jenny, and not Jenn or Jennifer, is fun.

Don returns with her water, and we head off and find a quiet spot.

Tell me about a typical day for you.

“I always go out. I walk a whole lot. We live near water, so I love walking down by the…the….the…”

“Lake Michigan,” says Don.

“Lake Michigan, yes. I love walking. I always have.”

Do you walk alone?
“Oh, yes.”

Where do you live?

“Up at the top…it looks right down to the water. It’s wonderful. It’s a lovely view. I walk there and almost anywhere. I walk up to…within…ahh, it’s so clear to me.”

“The Art Institute,” says Don.

“Yes, the Art Institute. The Cultural Center. You know, it’s very nice.”

Jenny’s anomia is quite severe and interferes with almost every answer she gives.

“I go to concerts at the Cultural Center. No set schedule. I can’t do as much as I used to do. But I always want to walk forward. I get angry at people who don’t want to let me do things or insist that I do or don’t, whether it’s silly or important. I don’t like those rules. On the other side of it…I…it’s doing what I really love to do…is spend time down close to the water.”

I wonder if her experience of this symptom is frustrating or embarrassing. It doesn’t seem to bother her. She appears to be genuinely enjoying our conversation.

What is it like having Alzheimer’s?

“I don’t think about it. I think I know all I want to know about Alzheimer’s. I do most things now that I did before. I definitely got annoyed when I found out I had it. But I thought it was me. It was a relief to know it was something other than me causing the problem.”

“Jenny was diagnosed April 1, 2002. Some joke! Her major symptom was agitation. As soon as she was diagnosed, the agitation stopped,” said Don.

Tell me about what you like to do at home.

“I look at some of the old bits of…I’ve been putting things away for years and years and years and years.”

“Letters to your mother. What she’s been putting away. She’s been going through letters she wrote to her mother,” explains Don.

“They’re steamy!” Jenny laughs.

She doesn’t remember her own letters to her mother when she reads them, but she enjoys them, often laughing out loud as she reads. She doesn’t mind that she doesn’t remember writing them or the stories as belonging to her own history. This feels normal to her. The stories in those letters happened so long ago, she feels that anyone could forget them. She’s not disturbed at all. She enjoys the letters for the content that’s there and doesn’t see them as evidence of a woman she once was who she can no longer remember.

“I sometimes look at some of the old stuff. I was an only child.”

“For a while you were. You have a sibling. There are two of you,” says Don.

“Oh, yes, that’s right. Anyway…”

Jenny and Don have many of these exchanges. Jenny can’t find a word, and Don fills in the blank. Jenny says something inaccurate, and Don corrects her. And she then agrees or disagrees or chooses to ignore him and continues on in stride, unruffled. Don is never patronizing. He’s not correcting an Alzheimer’s victim. The respect he has for his wife is obvious and enormous, and I can’t imagine it has been diminished at all by this disease. These little sidebars feel like the ordinary exchanges between a husband and wife who’ve been married for a long time. Of course, what Jenny can’t remember isn’t ordinary. But they both treat it that way. And it moves the conversation along. No one is embarrassed or upset or apologizing.

“I’m English to begin with. I came here in…”

She looks to Don.

“’64.”

“Yes, ‘64, and I actually didn’t like it very much. It seemed a stuffy place!”

She laughs.

“Well, she’d been in Africa for five years.”

“I was in Nigeria for four years, so I’d already done all that.”

What were you doing in Nigeria?

For the rest of my conversation with Jenny, we don’t talk about Alzheimer’s. She tells me about Nigeria, about college at Oxford, about her former job in health advocacy, about her travels and friends. At one point, I realize that we don’t have much time left together, and I’m tempted to ask her to get back to talking about Alzheimer’s. But thankfully, I don’t. Jenny isn’t about Alzheimer’s. Don isn’t about Alzheimer’s either. I remember what she’d said earlier:

“I don’t think about it.”

Her Alzheimer’s is like a naughty toddler throwing a tantrum in the middle of the room. If they were to try to tame it, bargain with it, or beg it to stop, if they became embarrassed or enraged by it, they’d only be feeding energy into it, making it bigger. It would take over and define their experience. Instead they ignore it and carry on. It’s there, but they don’t focus on it.

When I think back on my conversation with Jenny, I picture sunny walks along Lake Michigan, concerts at the Cultural Center, and Africa. I remember her pink shirt, her ponytail, and her laugh. And I remember the big hug she gave me when we were done.

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

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

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

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

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

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

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

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

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

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

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

!!!

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

Again, !!!

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

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

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

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.

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

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

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

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

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

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

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.”

January 2012

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.

Can You Offer Me Some Advice on Self-publishing?

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. Get on GoodReads! 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!

How did I get here? So many of my roads have led me here, it must be inevitable. Let me start at the beginning.

Inspired by the stories of Oliver Sacks and a curiosity for understanding how the brain works to affect behavior and reveal who we are, I entered the graduate program in Neuroscience at Harvard in 1994. I quickly became interested in the mechanisms underlying addiction, how the same drug administered chronically could hijack our natural reinforcement systems and dissociate wanting from liking. My lab bench was just down the hall from Rudy Tanzi and others who were working to crack the genetic code for Alzheimer’s. I graduated with a Ph.D. in the spring of 1998 with a keen interest in the Alzheimer’s research being conducted down the hall, but I wouldn’t say I’d been directly touched by Alzheimer’s Disease yet. That came next.

Looking back, my eighty-five-year-old, widowed grandmother had been showing signs of dementia for years. But she was a smart and active woman, and she navigated around her symptoms with great skill for some time. And her nine children, their spouses, and her grandchildren were all content to look the other way or to pass off her cognitive mistakes to normal aging.

Then we got the phone call. She’d walked to the bowling alley at four in the morning, insisting it was middle of the day and wondering why no one was there. It was quite literally the wake-up call that forced my family to look directly at her and what was going on.

Her daughter, my Aunt Mary, moved into her house (along with my Uncle Barry) and began working from there. Her other daughters, my mother, and, less often, I came over to help out. With nothing we could actually do to alter the course of her disease, like spectators we all watched Alzheimer’s systematically disassemble the woman that was my grandmother. Ironically and almost immediately, she forgot who my Aunt Mary was. When we told her that she was her daughter, Mary, I was struck by how she never believed us and that this didn’t ruffle her. Before Alzheimer’s, if you’d told my grandmother that someone was her child who she believed wasn’t, she most certainly would’ve argued with you or laughed at you or both.

She was losing herself. I watched her studying her own face in the mirror, not comprehending the old woman’s face she saw. She didn’t know her last name, the time of day, to remember to go to the bathroom when she needed to, who her children were, who I was.

But although she lost her history and couldn’t understand who we were or why we were there (she told people my Aunt Mary was a homeless woman who’d wandered in to live with her), there were parts of my grandmother that never left her. As she always had, she loved lively company. We’re a loud, Italian family. She delighted in having us there, sitting around her kitchen table, eating, laughing to tears, telling stories. And she remained good-natured and good-humored, always willing to participate. Here’s one of my favorite exchanges—

Aunt Mary: Come on, Ma, we’re going to the movies.
Nana: Okay, I don’t know who you are, but I’m coming!

The reasons why her family loved her, the reasons why we are connected, disappeared for her, but they didn’t for us. We continued to love her, and she accepted it. She understood our hugs and kisses and smiles and returned them with great enthusiasm. I know she felt included and loved to the moment she died. I know this is my Aunt Mary’s proudest achievement in life.

So I have a background in Neuroscience and a grandmother who had Alzheimer’s Disease. I’m on the road to here but not quite here yet. There were a couple of additional avenues I needed to travel first.

As I visited with my grandmother, the neuroscientist in me became fascinated with her progressive dissociation from her concept of self. I wondered what it must feel like, when those parts of the brain that inform awareness and identity become increasingly inaccessible, and I’d wished I’d thought to ask her more when she had the communication skills to describe it to me. A lover of learning and knowledge, she would’ve readily considered my questions. What is having Alzheimer’s Disease like from the point of view of the person with Alzheimer’s? This question was the seed of the novel I would write.

I needed to meet people with Alzheimer’s in the early stages, people who could still describe what it’s like to have dementia. I found them at www.dasninternational.org, an online community of intelligent, articulate, and passionate people in their forties, fifties, and sixties with dementia who support each other and advocate for better care and a cure. They bravely shared their most vulnerable experiences, helping me to create a fictional story about a young woman with Alzheimer’s that is in every way possible faithful and respectful to what having Alzheimer’s is actually like. To these amazing friends of mine, I owe my deepest gratitude and admiration.

When I began the book, I thought I was writing a story as a neuroscientist in honor of my grandmother and family. And I thought that when I finished, I’d quickly move on to other endeavors. But in the course of writing the book, my eyes were opened to more than I’d expected. I see what people with Alzheimer’s and their loved ones struggle through, emotionally, physically, and financially. I see how difficult getting a proper diagnosis can be. I see how ignored and outcast people with Alzheimer’s become. I see how close we could be to a treatment that can stop this disease in its tracks. Seeing what I see, I knew I’d be sticking around.


Get more on Lisa Genova at SimonandSchuster.com