I have known people who had Alzheimer’s Disease and it has been heartbreaking to try to be with them. It is something to be concerned about as your time draws to a close. What would the experience be like? Are my ordinary memory lapses signs of something more serious? There are 5 million people in the United States who have Alzheimer’s. Am I next?
While much has been written about the neurophysiology of the disease, little is known about what it is like to experience it. Anyone who tries to write about it is limited by the fact that they are either beset with it or are only able to observe how the stricken person behaves.
Still Alice a striking and moving fictional attempt to describe the experience from the point of view of an individual who has been diagnosed with early onset Alzheimer’s. It was written by Lisa Genova who holds a Ph.D. in neuroscience from Harvard. Currently she is an online columnist for the Alzheimer’s Association and has begun work on her second novel. Genova’s initial attempt to publish the book was rejected by over 100 literary agents and almost as many publishers. Eventually she managed to sell the book to a major publisher; it has become a best seller and currently ranks number 9 on the New York Times trade paperback fiction list.
Still Alice unfolds the course of Alzheimer’s in Alice Hovland who was diagnosed with early onset Alzheimers at the age of 50. At that time she was a distinguished, widely published Professor of Psychology at Harvard. The novel traces the course of the “molecular mayhem” of the disease as Alice begins to loose any connection with herself and the surrounding world
At first she couldn’t find a word in a sentence she was trying to finish. “She has a loose sense for what she wanted to say, but the word itself eluded her.” Then one day she became lost on a familiar street in Cambridge. She had trouble following conversations, could no longer make sense of research papers. She forgets the people she had just met at a party. One day she goes to the class she is teaching and sits in the back with the students waiting for the lecturer to appear. She gets angry, forgets a recipe she has made every year at Christmas, puts her Blackberry in the freezer, and enters the home of a nearby neighbor after returning from a run. . It is a horrible descent into mental oblivion and while it is a fictional account it sounds to me very much like what the actual experience must be.
Eventually she is asked to leave the department and turn over her research and teaching responsibilities to other faculty members. It is a graceful departure. Still she tries desperately to carve out a life for herself. She organizes a support group of early onset Alzheimer’s patients, volunteers to write for an Alzheimer’s organization, and visits with her children each of whom, along with her husband, also a neuroscientist at Harvard, devote as much time as they can in caring for her.
Astonishingly, she is able to deliver an address at an Alzheimer’s Association conference. She writes an eloquent speech and reads it without error. “We feel like we are neither here nor there….I am losing my yesterdays. If you ask me what I did yesterday, what happened, what I saw and felt and heard, I’d be hard pressed to give you details…Being diagnosed with Alzheimers’s is like being branded with a scarlet A….My yesterdays are disappearing, and my tomorrows are uncertain, so what I do I live for? I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech. But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today didn’t matter.”
At the end of her speech every member of the audience was standing and remained clapping for quite some time. A few tears were visible, including one my own. I found Still Alice one of the most poignant accounts of Alzheimer’s Disease that I have read.
For readers interested in learning more about what this experience is like to those to whom it comes and their caregivers, I strongly recommend the book. It ranks with John Baley’s Elegy for Iris an equally moving account his wife’s (Alice Murdoch), descent into Alzheimer’s and Away from Her, the film Sarah Polley wrote and directed of Alice Munro’s short story, The Bear Came over the Mountain.
In her preface to a reprinting of Munro’s story Polley remarks: “The Bear Came Over the Mountain entered my life when I was twenty-one years old. It crept right into me, had its way with me, and shifted my direction in ways I didn’t understand until years later….I can say without danger of overstatement that I have had a relationship with this story that has been as powerful and as transformative as any I have had with another human being….The story reshaped my idea of love..”