“Should we still read Still Alice?”

“Should we still read Still Alice?”

This question’s been nagging me. It’s a great story to raise awareness -- and it got five-time nominated Julianne Moore her first Oscar – but is it the best narrative to help us make sense of Alzheimer’s disease? I started writing and this Sunday’s Philadelphia Inquirer has my essay “How can we really live with Alzheimer’s disease?

An elderly patient once interrupted my examination of her heart to tell me “you’re doing what I wanted to do.” She explained how when she was young, she wanted to become a doctor, but, back then, that wasn’t what women did.

For women like her who fought to have a choice, the story of a 50 year old woman losing her capacity to be herself at the peak of her career as an Ivy League college professor isn’t simply a story that raises awareness. It’s a horror story.

The history of the 20th century is the history of the triumph of autonomy, and Alzheimer’s disease is a disease because it takes this away. As the U.S. embarks on a national plan to prevent it, these efforts, however, are going to challenge the very same autonomy we wish to protect. Still Alice raises awareness, but it’s not the right story to help us understand who has Alzheimer’s disease or how we’ll live with it in the 21st century.

I welcome your thoughts and comments.

 

On WHYY's "Radio Times" 9 March 2015 show -- Alzheimer's and End-of-Life Decisions" -- host Marty Moss-Coane talks with Barbara Bitros and me about living and dying with Alzheimer's disease. Barbara is a nurse who has been diagnosed with Mild Cognitive Impairment ("MCI") caused by Alzheimer's disease. She's decided that when she reaches a point of the "loss of her self identity" she will end her life.