The best-selling author of Still Alice sat down with Zoomer to talk about her new book Left Neglected, finding balance in our life and neurological disorders.
The way you portrayed Sarah cramming as much into every second of everyday was very effective. Was that autobiographical in any way?
Lisa Genova: It was definitely intentional and there are pieces of me there. I try really hard to keep my life in balance but I think I could have become Sarah. My oldest daughter is ten and I quit my job when she was born. At the time, I was working as a strategy consultant. So Sarah's job - she's the head of HR at a Strategy Consulting firm and she talks about the consultants who work a million hours and travel all over the place - that was me. I had the presence and sanity to realize that I couldn't be the parent I wanted to be and do that job, so I quit. I know that world, I still have a lot of girlfriends who are trying to honour their ambitions and their education. We grew up in a time when girls were educated just as well as the boys and were told we could do it all and have it all. But I still think we haven't quite figured it out. I find that the lion share of the parenting burden falls on the woman. I was born in 1970 and I grew up with those gender roles and I even placed them on myself at times. I'm not like Sarah though. I gave up that job and now I'm a writer.
You talk about having it all and Sarah is such a perfectionist. Do you think a lot of women put that pressure on themselves, even down to appearance?
LG: I think a lot of women do but I'm not quite sure why! Yes, some of it is our culture telling us we have to look gorgeous and be thin, have a beautiful home, because we watch all these shows of people showing us examples of the “beautiful perfect life.” Sarah thrives on this feeling of what's successful to her. I think we all hopefully have a need to contribute to the world and “be all that we can be,” but I think somewhere along the way a lot of us get lost and we're living someone else's version of what's successful and haven't really checked in with ourselves. “Does this make sense for me and my family,” or “do I really care for all of this, is this what I want?”
You have Heidi at one point telling Sarah that she's lucky. Was there a greater message in that?
LG: Yes. Again this book is a lot about what you pay attention to and what you don't; what you're conscious of and not conscious of. For any situation you can get a very narrow focus and focus on the negative and get caught up in the wrong loop. When Heidi says, you know there's a way you can look at this where you can realize how lucky you are - the road ahead is going to be challenging and it may not be what Sarah planned and she's going to miss a lot but she can also gain some things too if she chooses to look at it that way.
In the acknowledgments you thank the people that spoke to you about their condition, left neglect. Can you talk about your research?
LG: I started this book with a curiosity to understand this condition where you're walking through the whole world only aware of half of it. The reason I even knew about it was because I was a neuroscience student many years ago and I'd keep coming across these short descriptions of someone who has left neglect. It would describe them as drawing half of a clock or having a pen and paper task and they'd only recognize things on the right side of the page. It left me thinking, “my god, how does this person live? What does it feel like to have this?” My first book, Still Alice was about Alzheimer's and it came from my grandmother and wondering what it would feel like to have it, but not being able to find it anywhere in literature. Left neglect is even less written about and no one talks about it. That person who draws the clock with numbers 12 through 6, what happens when it's 20 minutes to nine? How do they get through their day? What is their day like? I read everything I could and went to some rehabilitation hospitals; I went to Spalding in Boston and a rehab hospital in Cape Cod. I talked to occupational therapists, physical therapists, speech pathologists and the doctors who oversee these patients. The condition is not as rare as I thought it was so I talked to some patients there and then others through word of mouth - Still Alice was already out and I created a website for Left Neglected before I wrote any of the book. The only thing really on the website was that I was interested in learning more about this condition beyond what's in the text books, so if you or someone you know has this condition and would like to share I'd love to hear from you, and people started emailing me. I also knew of some people through doctors and that's how it all started. I came to talk to about 8 people who have left neglect and sometimes their spouses/children would give me some input into how they perceive the world and walk through it with this.
Were you surprised by how open people were?
LG: I was less surprised with this one than with Alzheimer's, because this disease isn't life threatening. Although one woman I talked to had a brain tumor causing her left neglect and she passed away. For the most part, the people who I came to know who have it had been living with their left neglect for about a decade. The life-threatening thing that caused it (a stroke or hemorrhage) was long over with. We're so resilient as human beings, so after a decade goes by they live with it in a way that's comfortable and not painful to talk about. But they were very vulnerable and open and even let me in on things like how it affected their sex life. Really intimate stuff. It was great to get at the human side of things. There's a great quote by Oliver Sacks (who wrote Awakenings). “When we study disease we learn about anatomy, physiology and biology. When we study the person with the disease we learn about life.” And that's sort of the difference between reading about it in the textbooks and talking to the people who have it. That's when the story started to come to me about this person Sarah. What her obstacles might be and how she might handle them. Recognizing over and over again that everyone I interviewed had a sense of humour about it. Which I thought was great and I thought my character will definitely have a sense of humour about it, because it seems to be true. Whenever possible, what I try to do is tell the truth under imaginary circumstances. Part of the reason in including so many people in the process of learning about it was that I love to learn and I felt I was learning from the real experts but also, as I'm learning the truth, I can fold that into my story. I didn't have to make up a story about how someone would handle the disease in the first few weeks; I had eight examples of all different ways. But there was a common thread, a truth in there to how we as human beings handle something so traumatic and life changing.
Want to see Lisa Genova in person? Visit the Indigo Manulife Centre (55 Bloor west) on February 24th at 7pm. Lisa Genova will be joining in a conversation with Heather Reisman and authors Jeannette Walls and Elena Gorokhova.
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