By Jason Karlawish
2021 was a big book year for me.
Yes of course, there was mine. Conversations and correspondence with readers of The Problem of Alzheimer’s were enlightening and inspiring. So too was reading the following.
Three books rounded out my understanding of the experiences of either being a person with disabling and progressive cognitive impairments caused by diseases such as Alzheimer’s disease, or of caring for that person.
Dan Gibbs’ “A Tattoo on My Brain” is a personal account of living with a diagnosis of Alzheimer’s disease. I typically approach first-person illness narratives with skepticism. They tend not so much to break new ground but to simply repeat cultural tropes and reinforce stereotypes. This account of life with a biomarker defined diagnosis is different. The subtitle summarizes why: “A Neurologist’s Personal Battle against Alzheimer’s Disease.” This clearly written book combines two very distinct, even antagonistic, experiences. There is the highly subjective experience of being a patient and the highly objective experience of being physician who has diagnosed and cared for persons with the same disease. In one book is one narrative of two perspectives embodied in one person. The result is an unadorned account of what it’s like to lose one’s mind just a little bit at a time. Case in point is his account of apathy. I’m routinely prescribing this book to my patients.
“Finding the Right Words: A Story of Literature, Grief, and the Brain” returns to the scene of a kind of crime, namely the incomplete diagnosis and substandard care Jerry Weinstein received in an indifferent health care system and a culture haunted by stigmas. The authors are a masterful team. Bruce Miller, a neurologist at the University of California, San Francisco’s Memory and Aging Center, is a widely-recognized expert in the diagnosis and classification of neurodegenerative diseases. Cindy Weinstein is a professor of English literature who focuses on the 19th century American novel. Herman Melville, the master of narratives of dissection, is her specialty. Jerry was Cindy’s father. He died in 1997. Together, physician and literary scholar reconstruct what happened. This is the book to understand the value of knowing a diagnosis, of understanding what’s happening in the brain and how these events recast the minds of patient and caregiver.
Anne Basting’s “Creative Care: A Revolutionary Approach to Dementia and Elder Care” is among my prescriptions to caregivers, especially those who struggle to find meaning in creating a typical day that is safe, social, and engaged. Basting, a theater arts professor, makes a persuasive case that upends the usual and customary approaches to caring for persons living with dementia. Her central premise is that, together, caregivers and patients can create. She offers concrete ideas and steps to address some of the most vexing challenges.
Two other books rounded out my education.
Novelist and journalist Lionel Shriver’s “Should We Stay or Should We Go” is the story of Kay and Cyril, a comfortably settled, middle aged, middle class British couple who make plans for their future. The experiences of a decade of caring for Kay’s father with dementia were so unsettling and disturbing that the couple agree to end their lives at 80. And then they carry on with their lives. Eighty is enough. Or maybe not. Or perhaps it depends. For all those planners, those self-controllers, who seize the future and bind their families with the tight contractual grip of a well-composed, gravely worded “dementia advance directive” (“In the event I cannot recognize family, I ask that I be euthanized” or “Should I reach a stage when I am unable to feed myself, I ask that all feeding cease”) this book is required reading.
Annie Murphy Paul’s “The Extended Mind: The Power of Thinking Outside the Brain” is my long overdue introduction to human psychology. As a physician caring for persons with diseases summed up as diseases that cause a person to “lose their mind,” this thorough and meticulously documented account of what is our mind was revelatory.
Ok, two more (I read a lot, I suppose).
Already Toast: Caregiving and Burnout in America is Kate Washington’s vivid account of the disaster that is America’s (non)system of long term care services and supports. She amplifies her message with the saddest story. She was caregiver for her husband Brad. His disease? Cancer. Their ages? 40’s. Point is, the crisis of Alzheimer’s isn’t just the crisis of Alzheimer’s. It’s an American Problem.
Katie Engelhart’s The Inevitable: Dispatches on the Right to Die is her account of persons trying to seize control over untreatable or incurable diseases. Her stories are candid and sometimes quite disturbing accounts of persons who have ceased trying to live with their disease. Instead, their intent is to die. Chapters 4 and 5, “Memory” and “Mind” respectively, are vivid accounts of the sufferings of persons with brain diseases. They are the histories of a possible future in America.
I read to achieve several desires. There are enlightenment and knowledge, of course, but I also want entertainment, provocation, and to experience at least occasional delight in a well-composed sentence or a set of paragraphs that sing. Each of the following titles delivered a palatable mix of these desires.
Virginia Woolf’s “Mrs. Dalloway.” I confess without first reading her essay “Street Haunting: A London Adventure” and Annie Murphy Paul’s “The Extended Mind,” I might have set this one down. I’m glad I did not.
I wish I’d read James Baldwin’s “Giovanni’s Room” some three decades ago. And while I’m historically revising my personal curriculum, I’d like to pronounce that high school and college curricula ought to replace Salinger’s “The Catcher in the Rye” or Dicken’s various bildungsromans with Jonas Szekely’s “Temptation,” and I’m ready to figuratively fight to the literary death for Stephen Crane’s “The Red Badge of Courage.” That young man could write.
Finally, speaking of young men who could write, and who loved a beaker full of claret, John Keats’ poems continue to fascinate me as a physician. I’ve created a sort of cycle amongst “In drear nighted December,” “Ode to a Nightingale,” and then “Ode to Psyche.”