Body and mind

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.

FICTION

I Know This Much Is True book cover

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 book cover

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 book cover

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 book cover

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.”

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MEMOIR

God's Hotel book cover

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 book cover

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.”

We Are All Completely Beside Ourselves

As part of leaving Bloomington for college and my brand new start, 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. – We Are All Completely Beside Ourselves, by Karen Joy Fowler.

(I try to avoid spoilers, but there is one here, since I couldn’t write meaningfully about the book otherwise.)

We Are All Completely Beside Ourselves book coverIn Karen Joy Fowler’s novel, We Are All Completely Beside Ourselves, Rosemary Cooke and her twin sister, Fern, do everything together – toddle around in diapers,  share ice cream cones, play in the snow. One morning Rosemary and her brother awaken to find Fern gone, sent away by their parents.

Fern is a chimpanzee.

In the 1970s, a handful of behavioral psychologists thought it would be interesting to raise a chimpanzee as a human child, in adoptive human families. In part, they wanted to see if chimps could learn to communicate by using American Sign Language, thinking that might shed light on human language acquisition.

We Are All Completely Beside Ourselves is a fictional account of one such experiment and the disastrous consequences. No one in the Clarke family comes away unscathed – not Rosemary, not her brother, not her mother or her behavioral psychologist father. And certainly not Fern.

Rosemary is too young to understand the circumstances behind Fern’s banishment, which was mishandled by her parents (no surprise there), and she blocks out much of what happened. This is relatively easy to do, since her shattered mother and father don’t speak of Fern. Rosemary’s brother never forgives his parents for removing their little sister from the family with such confounding callousness; Rosemary wonders if someday she’ll be sent away, too.

When Rosemary enters kindergarten she has to learn to shed her chimp-like mannerisms. Still, the children sense Rosemary is different and call her “the monkey child.”

Friendless, chronically unable to get close to people, never feeling like she fits in, Rosemary must eventually piece together her past and then figure out where to go from there.

I read We Are All Completely Beside Ourselves with a great deal of admiration for Fowler’s storytelling skills, yet also with a kind of dread. I wanted to know why Fern was sent away and what became of her. And yet, I didn’t want to know.

Along the way, I learned some of the history of the use of animals in research. Though there is still much controversy, thanks to the Animal Welfare Act and similar policies, there is now a more enlightened approach to the treatment of animals used in research and testing. Whenever possible, non-animal alternatives are found. One of my medical librarian colleagues specializes in searching the biomedical literature for alternatives to animal testing for research.

The National Institutes of Health announced this summer it will greatly reduce the use of chimpanzees in NIH funded research. Many NIH chimps will be sent to the Federal Sanctuary System in Shreveport, Louisiana.

We Are All Completely Beside Ourselves is an extraordinary story.

THE HUMAN – CHIMP BOND

We Are All Completely Beside Ourselves, by Karen Joy Fowler

Ape House, by Sara Gruen

The Chimps of Fauna Sanctuary, by Andrew Westoll, winner of the Charles Taylor Prize for Literary Nonfiction

In the Shadow of Man, by Jane Goodall

Gorillas in the Mist, by Dian Fossey

Next of Kin, by Roger Fouts

 

If you’ve read Karen Joy Fowler’s book or any of the above, tell us what you think in the comments.

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