LISA GENOVA talks to SARAH MINNS about what she learnt about Alzheimer’s disease as she wrote her first novel, Still Alice.
Alzheimer’s disease can be funny. Lisa Genova knows this, because her grandmother had Alzheimer’s, and now she has dozens of friends with the illness.
‘When my Aunt Mary would say, “C’mon Mom, put your coat on, we’re going to the movies,” Nanna would say, “All right, I don’t know who you are, but I’m coming!” And she knew that was funny,’ Lisa tells me by phone one Tuesday morning. The funny side of Alzheimer’s is a relief because we’ve been having a very serious conversation about this disease which, as Lisa puts it, ‘doesn’t have a happy ending’ – and I spent a lot of time crying as I read Lisa’s debut novel, Still Alice.
In Still Alice, the title character is a Harvard University professor, highly respected in her chosen field of psycho-linguistics. At the start of the novel, she is forty-nine. Her husband is a scientist. She has three grown children, two of whom are pursuing professional careers, and one who – infuriatingly for Alice – just wants to act. The family is ordinary in most ways: subject to squabbles, minidramas, disappointments and moments of spontaneous love – it wouldn’t be much of a story if it weren’t for the fact that Alice is starting to be a little more forgetful than she should be. When Alice forgets where she is while on a run just a kilometre from her home, she decides to see her doctor, and is eventually referred to a neurologist who diagnoses her with early onset Alzheimer’s disease. A narrator with a perspective limited mostly to what Alice sees tells us the story of her intellectual disintegration, giving the reader a powerful insight into the effects of the illness on Alice and her family. For example, in the early parts of the book, Alice argues with her daughter Lydia about her chosen career, and later Alice chats with ‘a pretty young actress’, and it’s obvious Alice doesn’t see any connection to the young woman who, we clearly see, is her daughter. It’s heartbreaking, but not entirely as bleak as you might imagine.
‘Alice’s professional life was her identity,’ explains Lisa. ‘And she didn’t have room in her mentality to imagine anything for Lydia other than the very straight and narrow path that she had taken and that her other two children had taken. She thought “this is the path to success, this is the path to happiness.” But it was a limited way of thinking. Through Alzheimer’s, Alice had a chance to slow down. She had a chance to get to know Lydia and see what she was passionate about. And, oddly enough, the disease made her – at one point – forget all her hangups and offer her daughter great advice that she wouldn’t have been able to give had she not had Alzheimer’s.’
In other words, it’s more than just a story of a woman’s deterioration, it’s also a story about her growth, and it was important to Lisa to make that point.Lisa herself has learnt how to make the best of a difficult time in her life. In fact, it’s this attitude that led her to write a novel. Immediately after high school, Lisa spent almost a decade earning a science degree and PhD in neuroscience from Harvard University. She went on to be a consultant and researcher in molecular biology. Then came her first child and she was a full-time parent for four years.
And then she got divorced.
‘A couple of things happened while I was separating and getting divorced,’ she says. ‘One was that I had an overwhelming desire to see this as an opportunity to start anew and to do things – I was becoming a bit fearless. I’d always wanted to try acting. So I started taking acting classes in Boston … then the summer that my divorce was going through my daughter was about to start preschool and it was time for me to go back to work. Just before I was ready to take the job, I sort of paused long enough to think,
“Well, wait a second. Why do I have to do that? If I could do anything I wanted, what would it be?”’ At that point in time, she wanted to be a writer, so that’s what she did.
‘I wanted to tell this story from the perspective of someone with Alzheimer’s and I wanted it to be someone young. People forget this. You can be 50 when you get this. You can be 45, you can be 40. Think about how different that is. While this was devastating for my nanna, she was 85 and she wasn’t working for Corporate America and she wasn’t responsible and accountable for a lot anymore. But if you’re 50 … you might have children or parents yourself that you have to look after. Perhaps you’ve got this job, you’re multi-tasking all day, you’ve got a future that you’re looking forward to. If this hits when you’re 50 … I just thought, “Wow. That is a story that would be really compelling.”’
There is a part in the story where Alice, still in the very early stages of the illness, decides that, when it becomes clear she can no longer look after herself, she will end her own life. I ask Lisa about this very controversial subject.
‘One of the things that I found when I was doing research for the book, when I was talking to these folks with [early onset] Alzheimer’s regularly, is that every single one of these people had considered suicide. I thought that was extraordinary. The average 50-year-old does not consider suicide. But when you have Alzheimer’s and you’re 50 this is where the disease forces you to go. The other thing I found was that everyone’s very split. It’s emotional. It’s sort of like how people feel – at least in the United States – about abortion versus right-to-life, or the death penalty.’
But Lisa was amazed to discover that even the people who were very much opposed to euthanasia had considered suicide. ‘So I thought it was important for Alice to have considered suicide … I think what I wanted to show the reader – without hammering them over the head – is that Alice discovered through her Alzheimer’s that her worth and value as a human being goes beyond her ability to think about intellectual things. And she can be an important mentor to her daughter without even knowing that this woman is her daughter. That she can enjoy holding her grandchildren well beyond the time that she can remember her address.’
During her research for Still Alice, Lisa has befriended many who have Alzheimer’s. It must be tough for her to watch the inevitable progression of the disease in so many friends.
‘It’s really hard,’ she sighs. ‘I’m thinking of the names and the faces now of a few who don’t email me any more. A friend who I adore is emailing less and her emails are becoming more fragmented – sentences are incomplete and they’re shorter and less involved … At times you forget that these people are struggling with Alzheimer’s – it sort of fades into the background as you have conversations about other things. And then it rears its little head every now and then when someone says “oops I forgot this”or “I just did that” … I get a pit in my stomach and it’s very sad. No-one that I’ve met has died from Alzheimer’s yet and I don’t know how it will be when that happens.’
Right now, one of Lisa’s biggest concerns is that most people are diagnosed with Alzheimer’s much later than they should be, putting mental changes and lapses down to depression or menopause or the natural consequence of ageing. The drugs that are available do slow the progression of the disease if used in the early stages, so she feels it’s important to insist on seeing a neurologist if you feel your doctor isn’t taking your concerns seriously.
However, Lisa points out that a cure for Alzheimer’s is very close, and could be closer if more funding were devoted to research. She says that scientists now know the molecular ‘criminals’ they need to target, they just need to develop a compound which works against them and doesn’t have devastating side-effects.
‘We’ll see it – it’s just a matter of how soon,’ she says.
Still Alice by Lisa Genova is published by Simon & Schuster, rrp $19.99.