Alix Kates Shulman’s Memoir of Her Husband’s Traumatic Brain Injury

Love and sex in the time of brain damage.

When someone’s personality is altered by a brain injury, has the person changed or has the incident brought out what was there all along? Alix Kates Shulman explores stimulating questions like these in To Love What Is: A Marriage Transformed (Farrar, Straus, & Giroux, 192 pp., $22), a memoir of her life with her husband after he fell nine feet to the floor from a sleeping loft and survived with limits resembling those of advanced Alzheimer’s disease.

Shulman tells how, in the months after Scott’s accident, she came to understand the Latin phrase amor fati, which means “to love what is” or “to love your fate.” She writes with insight of the physical and emotional complexities of her husband’s traumatic brain injury (TBI), including its effect on their sex life. And she describes the incompetent care her husband received from mental-health professionals at a good hospital and her amazement on learning that she could fire them. That section alone might surprise  relatives of physically ill people for whom doctors have prescribed psychiatric care that the patients will have to pay for if their insurers won’t. Shulman has posted a generous amount of material adapted from the book on her Psychology Today blog, Love and Dementia, and the first chapter appears on her publisher’s site.

© 2009 Janice Harayda. All rights reserved.
www.janiceharayda.com

John Bayley on Living With His Wife’s Alzheimer’s Disease, ‘Elegy for Iris’

Few people have written of Alzheimer’s disease as eloquently as John Bayley does in Elegy for Iris (Picador, 1999), his memoir of 45 years with the novelist Iris Murdoch, which inspired the film Iris. Among his observations:

“Our mode of communication seems like underwater sonar, each bouncing pulsations off the other, then listening for an echo.”

“Alzheimer’s is, in fact, like an insidious fog, barely noticeable until everything around has disappeared. After that, it is no longer possible to believe that a world outside fog exists.”

“The terror of being alone, of being cut off for even a few seconds from the familiar object, is a feature of Alzheimer’s. If Iris could climb inside my skin now, or enter me as if I had a pouch like a kangaroo, she would do so.”

Bayley also foreshadows Murdoch’s development of Alzheimer’s in describing the early years of their relationship:

“I was far too preoccupied at the time to think of such parallels, but it was like living in a fairy story – the kind with sinister overtones and not always a happy ending – in which a young man loves a beautiful maiden who returns his love but is always disappearing into some unknown and mysterious world, about which she will reveal nothing.”

© 2008 Janice Harayda. All rights reserved.

The ‘Tyranny of Positive Thinking’ and Cancer Patients — A Physician-Author Says That It’s Not Always Best to Tell People to ‘Be Optimistic’

Can you give too much encouragement to people who are ill?

By Janice Harayda

Not long ago, I reviewed Betty Rollin’s Here’s the Bright Side and objected to its theme that all human suffering holds “a hidden prize waiting to be found.” I argued that some losses are so sad — the death of a child, say — that urging people to find their “bright side” is cruel.

Later I read some interesting, related comments by Jimmie Holland, chair of Department of Psychiatry and Behavioral Sciences at the Memorial Sloan-Kettering Cancer Center. They appeared in an article Leslie Brody wrote about caring for her husband, who has pancreatic cancer, for the New Jersey daily, The Record, on May 20, 2007.

“Think twice before telling the patient to ‘be positive,’” Brody wrote. She added:

“Dr. Jimmie C. Holland, author of The Human Side of Cancer and a pioneer in the psychological aspects of the illness, has written about the ‘tyranny of positive thinking.’ When people insist patients should ‘be optimistic,’ they imply that those who get sicker may be to blame for not trying hard enough to stay upbeat and conquer the disease.

“Holland says a patient’s mind-set might help him stick to a grueling chemo regimen, but it’s less clear whether attitudes and emotions in themselves can affect tumor growth or the body’s response. Patients — and their families — should feel free to vent depressing and anxious thoughts without being judged.

“Instead of saying ‘Chin up,’ or, ‘You’ll be fine,’ it’s better to say, ‘Hang in there,’ or ‘We’re thinking of you,’ or ‘We’re hoping for the best.’”

Links: To read the original review of Here’s the Bright Side, click here www.oneminutebookreviews.wordpress.com/2007/08/21/. To read about The Human Side of Cancer, click here www.humansideofcancer.com.

© 2007 Janice Harayda. All rights reserved.

www.janiceharayda.com