What are the pros and cons of getting genetic testing if your parent has Huntington’s Disease? What about dating and relationships?
A resident in the pediatric intensive care unit wants patient education information about shaken baby syndrome and traumatic brain injury.
A mother whose child has just been diagnosed with epilepsy wants to know if a special diet will help.
At teaching rounds, medical students on their first patient rotations are led through the process of making a diagnosis. “He has weakness in his arm and leg,” says the neurologist. “If his symptoms are on the right side, where is the lesion in the brain?”
These are some of the situations I’ve seen as a medical librarian. Sometimes we forget how precious and fragile are our bodies and minds. We can walk, run, speak, love, laugh, cry, sing, read, write, think, create, make plans, give comfort, enjoy a meal with family and friends. Until one day something changes.
I know from personal experience a mind can become irrevocably altered and an identity can vanish seemingly overnight. Which is probably why I am so fascinated by medicine, especially medicine having to do with the brain and behavior.
Here are some of my favorite books (fiction and nonfiction) about illness, recovery, medicine, the search for cures and miracles, and the people caught up in it all: medical professionals, researchers, patients and families. If you follow my blog, a few of the books will be familiar.
I Know This Much is True, by Wally Lamb
“On the afternoon of October 12, 1990, my twin brother Thomas entered the Three Rivers Connecticut Public Library, retreated to one of the rear study carrels, and prayed to God the sacrifice he was about to commit would be deemed acceptable.”
This is the best evocation of schizophrenia I’ve ever read. Wally Lamb is my hero.
By the way, Wally’s newest novel, We Are Water, was just published this month. It is on my nightstand in my little stack of books to read.
Saturday, by Ian McEwan
A neurosurgeon. Huntington’s Disease. A home invasion. A poem.
(The poem nestled deep within the plot sparks a crucial turning point. It also happens to be one of my lifelong favorites.)
State of Wonder, by Ann Patchett
“She was not terrified that the patient would die or she would lose the baby, she was terrified that she was doing something wrong in the eyes of Dr. Swenson.”
“I write with unfortunate news of Dr. Eckman, who died of a fever two nights ago. Given our location, this rain, the petty bureaucracies of government (both this one and your own), and the time sensitive nature of our project, we chose to bury him here in a manner in keeping with his Christian tradition….Despite any setbacks, we persevere.”
We Are All Completely Beside Ourselves, by Karen Joy Fowler
“…I’d made a careful decision to never ever tell anyone about my sister, Fern. Back in those college days I never spoke of her and seldom thought of her…..Though I was only five when she disappeared from my life, I do remember her. I remember her sharply – her smell and touch, scattered images of her face, her ears, her chin, her eyes. Her arms, her feet, her fingers.”
God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine, by Victoria Sweet
Inspired by Hildegard of Bingen (12th century German mystic and medical practitioner), as well as her own instinct for compassionate, attentive care, Dr. Sweet practices “slow medicine” at the last almshouse in the U.S. as it transitions to the modern age. We should all have a physician like Dr. Sweet.
My Beautiful Genome, by Lone Frank
“…we are each of us temporary depositories of information that has an almost eternal life, and which is passed on and on and on…”
“I am what I do with the beautiful information that has flowed through millions of years through billions of organisms and has, now, finally been entrusted to me.”