• Humanizing neurological diseases through literature


    DUBAI, UAE: Talks of neurological diseases are often marked with numbers and technical information that overlooks the painful human struggle, but that’s where the role of literature comes in.

    Neuroscientist and author Lisa Genova was inspired by her experience with her grandmother who was diagnosed with Alzheimer’s before pinning down her best-selling book Still Alice, a fiction that revolves around a Harvard professor suffering early onset Alzheimer’s disease.

    The book that, later adapted into film that won the Academy Award for Best Actress for Julianne Moore’s powerful performance, helped stir global conversation about Alzheimer’s disease.

    For the 46-year-old author, literature and film humanize such experiences and serve as vehicles for social change in overcoming the stigma surrounding mental illness.

    “I could understand Alzheimer’s as a nurse, scientist and a caregiver for my grandmother, but there was a missing piece for me, which is empathy,” said Genova on the sidelines of her panel discussion at Sharjah International Book Fair.

    “I didn’t know how to feel with her and I was upset she didn’t know who I was. All I read didn’t help me get an answer then I figured fiction is a place where you can explore empathy and walk in someone else’s shoes to express the disease from their point of view.”

    Using her experience as a neuroscientist, Genova published four New York Times best-selling books about characters dealing with neurological diseases ranging from Alzheimer’s to autism and Huntington’s Disease.

    Her upcoming book “Every Note Played” is about ALS – or Lou Gehrig’s disease -featuring a young concert pianist named Richard, a character inspired by Still Alice co-director Richard Glatzer who died of the disease in 2015.

    While Alzheimer’s disease revolves around identity, ALS is about forgiveness and communication, Genova said.
    “With Alzheimer’s, if you can’t remember who you are, are you still you? If you lost your job because you can’t function cognitively, do you still matter?” she added.

    Her new book is about a couple stuck in blame, regret and unresolved matters. “ALS paralyzes and steals people’s ability to eventually speak, which brings up the question: How many of us without ALS capable of saying everything we want but we fail to tell the people we love that we love them. We fail to give or accept forgiveness,” said Genova.

    Literature and film, she said, tackles such big universal human questions that people experience through diseases rather unfamiliar to society.

    While her book Still Alice came to life after coming across 27 cases of early stages of Alzheimer’s and countless interviews with doctors, Genova said the film invited global conversation.

    “There has been a big uptake in funding for research for Alzheimer’s. I see more attention, money and research are accelerating towards the disease,” she added.

    Even though cure hasn’t been particularly found, at least the book and film helped create global support system for patients and beat down the stigma around the disease.

    “Patients of these diseases are excluded because society is unfamiliar with their conditions, but this education will help people break down shame and fear, inviting these people back into the community,” said Genova.

    When cancer wasn’t spoken about, there were no treatments nor survivors. “When we put down that shame and fear, people rallied around families going through cancer and now we have treatments and survivors,” noted Genova. “Books and films will be our vehicles to change that about similar diseases.”


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