- “I’ve been diagnosed with Alzheimer’s or dementia. Who am I? Who am I now that I’m living with the disease? Who will I be in ten years? What is the connection between my past and the present? Am I made up of my memories?”
- “My loved one has been diagnosed with Alzheimer’s or dementia. Am I still their spouse/child/friend? Has that relationship changed because of the illness? What do I owe my loved one? What do I owe myself?”
These are questions that a person can often ignore when he or she is moving about a day, unencumbered by the stress of dealing with dementia. When a person is living with dementia or caring for someone with dementia, however, these questions can occupy a significant amount of a person’s thinking.
A handful of people have worked to answer these and other questions on paper. They have gathered and organized their thoughts, written down their experiences, and shared their struggles, joys, and lessons learned. Editors have helped the writers craft the words into readable stories and get them to the shelves of bookstores and libraries.
By composing and subsequently publishing their work, these people have worked to make meaning out of their illness experience through writing. Each writer has a goal for sharing their story of sickness. Writers have shared their stories so that others might not suffer so much or so that individuals who have not encountered dementia might have a better understanding of what the experience of illness feels like. Some writers have wanted the reader to know that– despite the illness– they are “still here”. Others want the readers to know what exactly has been lost.
Scholars in the medical & health humanities are keenly interested in learning what stories can teach us about how humans make sense of life, illness, vulnerability, and death. Martina Zimmermann, a scientist and health humanist, has gathered and examined all of the book-length narratives of Alzheimer’s between 1982 and 2014. I reviewed the book, The Poetics and Politics of Alzheimer’s Disease Life-Writing, by Martina Zimmermann, over at the blog for the Center for Medical Humanities at Durham University in the United Kingdom. For those of you interested in how caregivers and people with Alzheimer’s write about their experiences and– in doing so– construct a narrative self, then please take a read of the review and the book.