Chapter 7, Book # 4

A page taken from my writing journal, 9/17/13

Joe and Rosie are at MGH in Boston, heading into the Wang Building.  Joe has been to the ER at MGH while on duty many times, but never in the Wang, never up the elevator.  He was referred by his PCP to a neurologist, to a "Movement Specialist."  Seems like a lot of fuss over a bad knee.  But he's going.  He's going for Rosie.  She made the appointment.

Here we go into the meat of the story, Lisa.  It feels like it took a long freakin time to get here, and there is still a long way to go.  Keep going the way you're going.  I think the thing that has you worried is fitting Katie in.  She's essential.  The kids need their experience and voice represented in this book.  Huntington's Disease is a family disease.  It affects everyone, every generation.  But how will I give Katie enough to make her important and yet not a distraction?  Her story needs to stand alone, and then it needs to find interplay, connection with her dad's story.  How will their journeys intersect and impact each other?

I'm not there yet, so all this worrying is about something that hasn't happened.  Now you are with Joe, and he is at the neurologist at MGH, and that MUST happen no matter what.  So go there with him, Lisa, and find out what happens.  Be open, be vulnerable.  See it, feel it, moment to moment, and infuse it with real information from your research.  Tell the truth.

Misconceptions

Love Anthony is now in paperback, which means, among other things, that it has a new cover design.  I love the new cover.  I think it’s eye-catching and aesthetically pleasing, and the image is even highly relevant to the story.  Books covers are so important.  It’s the first thing a potential reader sees and can be the singular, pivotal reason why someone picks that book up and decides to see what’s inside or alternatively decides to walk away and choose something else.  The entire content of book can be deemed desirable or undesirable based on a quick glance at the cover.  So many unspoken assumptions are made about the story on the inside based on the cover on the outside.

This has me thinking about autism.  I’ve been speaking about autism at book events since September, and there are a lot of false assumptions circulating out there, especially among people not directly affected by autism—so many misconceptions based on a quick glance at someone’s “outside cover” with little or no experience with the “inside story.”  Many of these misconceptions have been told and retold for so long, they’ve reached an almost urban myth status.

• ·      Nonverbal people with autism don’t understand language.
• ·      People with autism are cognitively impaired, or less nicely put, mentally retarded.
• ·      People with autism don’t feel love.

Most people I talk with who aren’t directly affected by autism often admit to me that the sum total of what they know about it was gleaned from Dustin Hoffman’s performance in Rain Man.

So let’s “open the book” and debunk these myths.

Myth #1: Nonverbal people with autism don’t understand language.

It’s possible that for some nonverbal autistic people, language is not intelligible.  But what if it is?  Can you know for sure?  I think it’s safer and far more humane to assume that all nonverbal people with autism have inner voices.  They understand what you’re saying.  And they are listening.

I’d like to share a couple of examples here of nonverbal autistic people, heroes really, who have battled and broken through the silence to reveal their inner voices.

Carly Fleishman: “I want people to understand that autistic people are people and we all have an inner voice.”

http://carlysvoice.com/home/

Elizabeth Bonker: “On the dark side is the traditional belief that we have no language. Free your minds from disbelief.”

http://www.youtube.com/watch?feature=player_embedded&v=VcEM-lsAgf8

Myth #2: People with autism are cognitively impaired.

Some people with autism do have some additional cognitive challenges, but IQ tests that rely on expression of language or pointing, outputs that can be unavailable or severely impaired in some autistic people, aren’t going to be sensitive enough to reveal to the intelligence that might lie within.

Autism does not equal unintelligent.  Autism does not equal unable to learn.  In fact, some of the smartest people living on the planet today have Asperger’s--Temple Grandin and Daniel Tammet, to name two.  It’s been speculated by many that if Albert Einstein, Thomas Jefferson, and Wolfgang Mozart were alive today, they’d be diagnosed on the spectrum.  A pretty smart crowd, if you ask me.

Myth #3: Autistic people don’t feel love.

I recently did a book event with AndrewSolomon, author of Far from the Tree, on World Autism Day in Toronto, and he admitted to having this misapprehension prior to doing the research for his book.

It’s easy to see where this preconception comes from, especially if viewed from a distance, “from the cover” so to speak.  If a child can’t say “I love you,” if he doesn’t like to be hugged, if he can’t make eye contact and exchange all the magic that can happen in a shared gaze, if love can’t be reciprocated in the ways we traditionally show and feel it, is love there?

It is.  Without question.

All of the parents I know and spoke with about autism love their autistic kids and feel loved in return.  And I’ve witnessed it—in a knowing smile, in an exuberant hand flapping, in an unspoken energy, in how hard these kids work to please their parents.

Myth #4: People with autism are poor social communicators.

Wait, you’re thinking, this one can’t be a myth.  This is the actual clinical description of autism.  According to DSM IV, autism is characterized by difficulties in social interaction, verbal and nonverbal communication, and repetitive, restrictive behaviors.  Even people with autism who can speak have trouble communicating, especially with comprehension of double meaning, facial expression, and body language.  This deficit in social communication is a DEFINING symptom of autism.

So if it’s a defining symptom, how can it be a myth?

In March, I attended the Tucson Festival of Books to promote Love Anthony.  In addition to the two panels I was on with other fiction writers, I was scheduled to be on a speaking panel with JohnElder Robison.  John has written three books—Look Me in the Eye, Be Different, and Raising Cubby.  John has Asperger’s.

About ten minutes before our scheduled time to begin, the room was already filled to capacity (300) with people standing in the hall, willing to stay and only listen.  John arrived, and I introduced myself.  He said hello, gave me a courtesy, fleeting moment of eye contact, and then he paced.

We were supposed to sit side-by-side at a table before set microphones and cards bearing our names and next to a moderator, but John wasn’t going to be able to sit still.  He needed to stand and move.  The organizers adjusted, and I decided to join him and stand, too.  Meanwhile, John continued moving, touching everything on the table as he passed it.

I do a lot of speaking, and I like to think I’m pretty good at it.  One of the challenges in speaking in front of an audience of 300 is to make everyone feel included, like they’re part of an intimate conversation.  It involves not just getting up and talking but talking TO PEOPLE, engaging them in what you have to say, sharing an experience together.  In short, it involves social communication.

And here is John, pacing around with Asperger’s.

So I thought to myself, “Okay, Lisa.  You’re probably going to have carry this hour.  He’s not going to be able to do this.”

I couldn’t have been more wrong.  He was AWESOME!  He was smart, funny, dynamic, and incredibly entertaining.  HE was the one who could’ve carried the whole hour (and pretty much did).  After our presentation, the line of people waiting to connect with him personally and have books signed far exceeded the line of people in front of me.

So there you go.  John has autism, AND he’s an exceptional communicator.  Myth busted.

The great lesson in all of this has been told to me over and over by parents of children with autism.  “If you’ve met one child with autism, you’ve met one child with autism.”  Or, put another way—please don’t judge a book by its cover.

Making a Contribution

I’ve had the good fortune to see many of my “old” neuroscientist friends over the past year through book tour and speaking event travels or through the research I’m doing for my next book.  I love listening to them talk passionately about their research, and I especially love that I can still understand it all, as I now spend my time writing novels rather than scientific research grants or papers.

Alzheimer’s, anxiety, bipolar, Huntington’s, autism, schizophrenia, Parkinson’s.

Cytokines, glutamate receptor upregulation, gene expression, caudate nucleus, amygdala, CAG expansion, GABA.

These brilliant scientists are making exciting and significant contributions to the body of knowledge that will someday lead to medical treatments and cures.  While I still love hanging out with scientists and learning about their latest research results and next set of hypotheses, and I always leave feeling awed and inspired, I also invariably leave feeling a bit stirred up.

I used to do what they do!  I have a Ph.D. in neuroscience from Harvard.  I used to do brain research at prestigious places such as Mass General, McLean Hospital, and the NIH.  I still could, but I’ve chosen to dedicate my career to writing novels instead.  At times, this feels like a really strange choice.  My former colleagues are making critical contributions to science.  What am I doing?

I write about people living with neurological diseases or conditions who are ignored, feared, and misunderstood.  I write novels.  Not scientific research papers, not clinical review papers, not even non-fiction.  Why on earth do I do this?  What is the value in a neuroscientist writing fiction?  What is my contribution?  Is it to science or literature or something else entirely?

I’ve spent considerable time pondering these questions.  Here’s what I’ve come up with.

Fiction is accessible.  Unless directly affected, most people aren’t going to read a scientific research article about Alzheimer’s, brain injury, or autism.  Most people probably aren’t going to read a non-fiction book about these topics either.  Those texts tend to be too dry, too clinical, too technical, too impersonal, too intellectual.  They’re often filled with facts and statistics.

Every 68 seconds, someone in the US is diagnosed with Alzheimer’s.

1 in 88 children in the US is on the autism spectrum.

The science is necessary (and fascinating to neuro-geeks like me), and the facts and statistics are staggering, but numbers aren’t what we’re all looking for.  Five and half million Americans have Alzheimer’s Disease.  They and all the people who love them are all in desperate need of learning more about this disease, but they want to understand it in a way that’s accessible.  They want to understand it with their hearts, not just their heads.

What does it feel like to have Alzheimer’s, a traumatic brain injury, autism, Huntington's?  Most of us don’t know, and reading the clinical literature is either too daunting or too scary or both.

Fiction is a powerful way in.  Most people aren’t going to read the article about autism in the April issue of the Journal of Neuroscience.  But they might read a novel about a family living with autism.  Fiction gives us access to what might otherwise be too overwhelming to consider.  Fiction can give us the humanity behind the science and the statistics.

If you read my novels, you will learn some real science and clinical information (yes, I sneak it in).  But beyond intellectual knowledge, what I think and hope most readers take away from my books is a compassionate awareness.

Compassionate awareness.  This is my contribution.  And I believe it’s an important contribution because it is this kind of awareness that can help break down the stigma and alienation imposed on families affected by these diseases and conditions.  It is compassionate awareness that says to the world, “I see you.  You exist.  You matter.  And I care.”

While I’m proud of this contribution, I’d like to do more, and I’d like to ask for your help.

This month is Autism Awareness Month.  My third novel, Love Anthony, is about autism.  If you’ve read Love Anthony, and it’s made you more compassionately aware of autism as you walk through the world, if you finished it and felt educated, entertained, inspired, if you feel like you now have more sensitivity and empathy for families living with autism, then I’m asking you to get involved.

I’m asking you to take that compassionate awareness you now have and donate something to Autism Speaks or an autism organization of your choice.  It doesn’t have to be much to make a big impact.  I think it’s fair to guesstimate that at least two million Americans have read Still Alice.  Imagine if each reader had donated $1 to the Alzheimer’s Association.  That would’ve made a powerful and amazing contribution to Alzheimer’s care and research.  Let’s do that for autism.  Let’s see how powerful and amazing this readership can be.

Please consider making a contribution to Autism Speaks though this link:

http://www.autismspeaks.org/ways-give?utm_source=autismspeaks.org&utm_content=ways-to-give&utm_medium=menu&utm_campaign=waysgive

And if you do, please comment here or shout it out on Facebook or Twitter.  Let others know, and maybe you’ll inspire them to contribute, too.

Thank you,

Lisa Genova

From Love Anthony Morning Pages, 3/31/11

I bought this notebook as a treat to myself.  I love it--the words on the cover*, the size, its bendable frame.  I'm hoping it inspires me to pick it up every day, to write Morning Pages and jot down ideas, capturing those flashes of divine lightning that will become Love Anthony.

I'm already in love with this book I haven't written yet, and I'm terrified of it.  I need to release the fear surrounding this book, this topic of autism.  Lisa, be fearless.  I give you permission to write this story.  Don't worry about whether it will please everyone--it won't.  Make sure Tracey loves it--you don't have to please anyone else.

I need to figure out how this book begins.  All books begin in the middle of something--these characters are already alive and moving around, doing something, feeling something.

What am I in the middle of doing?  Today I'm going to yoga, the grocery store, I'm watching an autism video, and I'm interviewing Corinne Murphy about ABA therapy tonight at 7:00.  I need to go through my notebooks and notes from interviews and organize them, see what I have, what I know.

This book is going to be challenging. Olivia is in present time and sharing flashbacks.  Through journal entries?  Put them in italics--like in The Paris Wife?  I think so.  And Beth's novel will be Anthony's voice.  This will be first person, present tense, different font.

I need to organize the story so that it flows from one character, one piece of the puzzle, one revelation to the next without confusion.  All threads need to tie.  I really do love how difficult this is--I love the challenge of it.  People talk about writing fiction as being so right brain, using your creative mind.  But it also requires a lot of left brain--the pace, the plot points, the rhythm--these elements seem analytical to me.

Again, how do I begin this story?  I think both women go to the mailbox on the same morning--Beth receives a letter that will change her life, and Olivia receives some of Anthony's rocks.

Olivia will remember receiving news that changed her life--Anthony has autism.  Dr. asked her, "How's your marriage?"  Thought it was good at the time, normal good, fighting-making up.  She thought at the time--this will either force us to get close or tear us apart.  It put pressure on all the fault lines that had been dormant, unbothered, unnoticed before autism.  They had never been great at communicating, at leaning on each on each other, resolving problems, but it had never much mattered before.  Before.  After, it mattered, and they didn't have what it took to survive.  She wonders if she has contributed to the statistics--1 in 70 boys, 80% of marriages with an autistic child will end in divorce. She's part of a large and growing population, but that doesn't do a damn thing about the loneliness; she feels no comfort in being included in this crowd.  She's a woman, not a statistic.

So begin it with Beth walking to the mailbox, noticing another woman.  It is Olivia, and they are strangers noticing each other.  This is where their lives, already in motion, begin to intersect.


* On the cover of this notebook: "First it begins inside your heart. Something moves. Then opens. Then frees itself. And now you feel a rhythm breaking its long silence. This is going to be good."

Creativity, Fear, and Flying

From my writing journal, 4/16/11

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

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

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

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

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

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

Remembering Jenny, 1937-2012

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.

Anthony's Rocks

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.