Genova’s Unforgettable Journey

Lisa Genova graduated valedictorian, summa cum laude, Phi Beta Kappa from Bates College with a degree in Biopsychology and earned a Ph.D. in Neuroscience from Harvard University. But it wasn’t all that long before she took a left turn, employing her scientific knowledge in service of writing fiction in an effort to humanize brain diseases and disorders. So unexpected was her detour that she ended up having to self-publish her first book, Still Alice, which detailed the accurate facts of the disease within an accessible narrative of the journey of those affected by Alzheimer’s, helping to demystify the disease, and shift support for both care and scientific research. Still Alice not only became a best-seller but was also adapted into a 2015 film that earned actress Julianne Moore the Best Actress Oscar. 

Genova – who will talk about those journeys and the lessons of empathy in a public lecture titled “Still Alice: Understanding Alzheimer’s,” at 7:30 pmon Saturday, March 9, at UCSB Campbell Hall – is thrilled that she’s helped to popularize viewing the diseases through a different lens. “Neuroscience was much more of a geeky endeavor when I got into it, but now it’s a hot and sexy topic,” she said over the phone from San Francisco earlier this week. “I like that it’s somehow become cool.”

Q. You’ve written several other books, including a recent one on ALS. But this talk is about Still Alice and Alzheimer’s. Why? 

A. Because I’m not promoting my books. I’m using Alzheimer’s as an example because it has or will impact almost everybody. My talks are about how story can be used as a vehicle for empathy and conversation that fuels social change. Everybody is so terrified of Alzheimer’s, doesn’t walk to look at it or talk about it. I get why. But 50 million people worldwide have it. How do we learn to not turn our backs on them? In the absence of a cure, how do we live with this disease? … In 1900 our life expectancy was 47. We didn’t live long enough to see these diseases. Now we have this amazing bonus of longevity but it comes with the risk of getting Alzheimer’s – the stat now is that by age 85 chances are 1 in 3, and increasing. We have to pay attention in a way that connects us. I’m a neuroscientist who writes novels. Which I know is really weird. But story is a way of understanding something through the lens of empathy, which can be a profoundly meaningful way. 

I understand that Still Alice was inspired by Alzheimer’s in your own family. 

That’s the crux of it all. My grandmother had Alzheimer’s. I’m from a big Italian family, so the caregiving didn’t fall on my shoulders. But I’m the neuroscientist, so I learned everything I could about Alzheimer’s to understand how to deal with it. So I studied the molecular neurobiology, the clinical management, got up to date about all that’s understood about the disease. But I still didn’t know how to simply be with her. What was missing was empathy. I could feel for her, and I felt so bad for her and us: heartbroken, scared, frustrated embarrassed, discouraged, and helpless, but I didn’t know how to feel with her – which is the difference between sympathy and empathy. Sympathy divides us – you are different – I feel bad, but I’m separate and safe, I don’t have to feel it. But with empathy, I’m willing to feel what you feel, imagine what it’s like to be you. And that collapses the distance between and is a way to stay connected. This is the piece we all want. Still reach and connect with our loved ones. You can do that even if the person has no idea who you are. People can still understand what it feels like to be loved. That gives a lot of comfort and peace to people who have to go through it.

What do you talk about in the lecture that isn’t in the book?

It’s about the journey toward empathy, which enhances anything I want to understand. Neurological diseases and mental disorders like ALS, bipolar, autism are great examples of how we tend to “other-ize” people because we are afraid, so we look away. And that makes what is already a difficult journey even harder, because they feel excluded, alienated and isolated… But beyond diseases, we live in a time that’s very divided, whether it’s culture, religion, or political viewpoint. If we ask what’s the story, and try to see who are they really, maybe we can see the ways we’re more alike than different and find a broader deeper understanding of each other.

On the other hand, your very popular TED talk was about prevention, which is obviously more fact-based scientific information. Is that a concurrent focus for you alongside the fiction approach?

Yes. That’s also one of the take home messages of the talk. We all think there’s nothing you can do and it’s hopeless so I won’t deal with it. Which is weird, because do all sorts of things to protect our heart health, we’re not terrified to get diagnostic tests. So I’m trying to get people to think about brain health. We have a lot of data of these low-tech, not very sexy things that can significantly reduce your chances of getting this hideous disease. Alzheimer’s doesn’t have to be the brain’s destiny if we have the courage to become familiar with this scary topic.

History Comes Alive

Six historical women come alive through monologues performed by DramaDogs actors to celebrate Women’s History Month at two local libraries this week. Written by Terre Ouwehand, the piece embodies the stories of abolitionist Harriet Tubman, anti-war Congresswoman Jeannette Rankin, Santa Barbara architect Lutah Maria Riggs, birth control pioneer Margaret Sanger, singer Marian Anderson, and environmental biologist Singer Rachel Carlson. The audience serves as the character each woman is addressing – including Congress, a reporter, and a potential supporter. The free performances, which also feature live music and projected photos, take place 4 pm Friday, March 8, at the Carpinteria Library, and 3 pm Sunday, March 10, at the Central Library’s Faulkner Gallery.

UCSB Theatre’s production of The Laramie Project – written in the immediate aftermath of the brutal murder of gay teen Matthew Shepard in Wyoming via text taken verbatim from hundreds of interviews with of the community where the crime took place – winds up its run at Hatlen Theatre on Saturday, and reports are that the works remains vital, and perhaps even more timely in our increasingly polarized times. Info at (805) 893-2064 or www.theaterdance.ucsb.edu.

UCSB Department Marches into March with Much More Music

UCSB’s Department of Music Winter Concert Series concludes its run of nearly daily concerts through Friday, March 15, with a number of intriguing highlights among the programs. On Thursday, March 7, Paul Bambach directs the Wind Ensemble in “Paradiso,” featuring Michael Markowski’s Tidal Forces, Wallingford Riegger’s Dance Rhythms for Band, Percy Grainger’s tribute to his native country, Australia Colonial Song, and the Dante-inspired Divine Comedy by Robert W. Smith, which give the concert its name, among the works… Daniel Newman-Lessler will conduct the Chamber Choir in the world premiere of his own work, Pray Not!, in a program also featuring pieces by Hildegard von Bingen, Meredith Monk, Pauline Oliveros, Nick Strimple, and Paul Hindemith, among others, in a paired bill with the Women’s Chorus, conducted by graduate student Tyler Reece, featuring works by Ralph Vaughan Williams, G. F. Händel, Guido D’Arezzo, Gustav Holst, William Schumann, Zoltán Kodály, and Aaron Copland’s Ching-a-Ring Chaw! (Friday, March 8; Trinity Episcopal Church; $15 general, $10 students)… On Saturday, March 9, the UCSB Middle East Ensemble will celebrate its 30th year with a program featuring a slew of special guest artists including vocalist and multi-instrumentalist Reza Mahini, dancer and choreographer Hassan Harfouche, and vocalists Javid John Mosadeghi, Nazerke Doskeldi, and Sarah Salem, as well as performances by the UCSB Middle East Ensemble Dance Company, with choreography by Cris! Basimah, Laurel Victoria Gray, and Hassan Harfouche ($15 general, $10 students).

After a day off, the concerts resume on Monday, March 11, with a performance of solo and chamber music by department faculty members Isabel Bayrakdarian (soprano), Ertan Torgul (violin), Jonathan Moerschel (viola), Jennifer Kloetzel (cello), Natasha Kislenko (piano), and Robert Koenig (piano), with a program of Ernst von Dohnányi’s Serenade for String Trio in C Major, Op. 10, Xavier Montsalvatge’s Cinco Canciones Negras, and Maurice Ravel’s Trio for Violin, Cello, and Piano… Tuesday is also dark before the Jazz Ensemble takes over on Wednesday, March 13, with “Then and Now,” which explores large ensemble jazz repertoire in a variety of original and updated arrangements including All of Me, “Jelly Roll” Morton’s King Porter Stomp, Louis Prima’s Sing, Sing, Sing, W.C. Handy’s St. Louis Blues and Duke Ellington’s Caravan… The Music of India Ensemble takes over next Thursday, March 14, playing North Indian classical music on sitars and tabla at Karl Geiringer Hall, before the Gospel Choir closes out the series on Friday, March 15, with a program of traditional and contemporary songs drawn from African American religious traditions.Unless otherwise indicated, all of the concerts begin at 7:30 pm, take place at Lotte Lehmann Concert Hall on the UCSB campus, and cost $10 general, $5 students (free for UCSB students). Tickets and more info at (805) 893-7194 or www.music.ucsb.edu.