Curious, Healing » disability

“Alchemy of Illness” by Kat Duff

Sonia Connolly — Sun, 25 Mar 2012 00:48:19 +0000

Subtitle: A woman explores the transforming – and, paradoxically, healing – experience of being ill

Recommended by: a client

Alchemists strive to turn lead into gold by heating it alone in a sealed container, a crucible. In the crucible of Chronic Fatigue Syndrome, Kat Duff turned inward and found healing in the stillness and isolation forced by her illness.

Weaving together symptoms, dreams, mythology, Jungian psychology, and alchemy along with anthropological research into illness and healing, Duff reveals new perspectives on illness. Instead of being an assault or a punishment, illness can be a natural consequence of our history as individuals and communities. She sees her illness as an agent of healing both for sexual abuse she suffered as an infant, and for the land theft her forebears committed against the Sioux tribe in Minnesota.

Duff is careful to avoid the painful idea that “sick people are personally responsible for creating their illnesses through some kind of wrong-thinking or wrong-doing.” Sickness isn’t bad. It just is.

She relates a story about Nan Shin, a Zen nun diagnosed with cancer and struggling with guilt and remorse.

Then an old friend, who was also a Zen student, visited. He threw his arm around her shoulders and wisecracked, “Good Karma, huh? Brings you close to the Way.” Shin wrote later, “The jolt I felt then showed me very clearly that I had been thinking, Bad Karma. Within a fraction of a second the molecules turned themselves round and reorganized. I am flatly grateful to him forever.”

Unfortunately, Duff conflates illness with disability, and occasionally uses phrases like “confined to a wheelchair.” People are not confined by wheelchairs any more than people are confined by bicycles, cars, or any other device that assists mobility.

I recommend this book for its kaleidoscope of new perspectives about illness.

Available at Powell’s Books.

“Fixing My Gaze” by Susan R. Barry

Sonia Connolly — Tue, 30 Aug 2011 02:23:27 +0000

Subtitle: A Scientist’s Journey into Seeing in Three Dimensions

Recommended by: jesse-the-k

This book was a revelation for me. At last, a book for which I am the perfect target audience! Susan R. Barry writes about the experience of having crossed eyes since infancy, and thus lacking stereoscopic (3-D) vision. After practicing a series of vision therapy exercises prescribed by an optometrist, she gains stereoscopic vision.

In addition to the convenience of being able to judge distances easily, she feels a part of the world she can see all around her rather than an observer of the world “out there.” She looks at the spaces between leaves with fascination. The steering wheel of her car “pops out” at her rather than appearing flat against the dashboard. Astonishing!

In addition to describing her experiences of monocular and binocular vision, she covers the neuroscience of vision, and the possible explanation for her ability to regain stereoscopic vision more than 40 years after the “critical period” of early childhood.

I also have slightly crossed eyes and lack stereoscopic vision. I believe I lost the ability around 4-5 years of age. I would love to get it back!

As both a memoir and a scientific overview, this book worked well for me. Because the author was present with her story, I felt included as well.

The only downside was the casual reference to animal experimentation. “Of course they can’t experiment on humans – so they harmed monkeys and cats instead!” (paraphrase) As much as I enjoyed the book, I almost stopped reading there.

Nevertheless, highly recommended.

Available at Powell’s Books.

“The Spirit Catches You and You Fall Down” by Anne Fadiman

Sonia Connolly — Fri, 01 Apr 2011 04:39:52 +0000

Subtitle: A Hmong child, her American doctors, and the collision of two cultures

Recommended by: Emily Ross

This is a beautifully written history of the Hmong people from Laos in the 20th century, interwoven with the story of one Hmong family who took refuge in Merced, California. Their daughter Lia Lee had her first epileptic seizure at age 4 months. Both the family and Lia’s doctors struggle with her illness and with the communication barriers between their cultures.

The Lees are frustrated because Lia continues to have seizures, and her prescribed medicines cause side-effects they don’t expect. The doctors are frustrated because the Lees don’t speak English and “aren’t compliant” with the medicine schedule. Also, the Lees have very little money.

Dr. Arthur Kleinman, a psychiatrist and medical anthropologist at Harvard Medical School, developed a set of eight questions to elicit a patient’s “explanatory model.” After getting to know the Lees, Anne Fadiman answers the eight questions from their perspective. The American doctors continue full-tilt in their own medical explanatory model, unable to consider a different model.

What do you call the problem?
Qaug dab peg. That means the spirit catches you and you fall down.

What do you think has caused the problem?
Soul loss.

Why do you think it started when it did?
Lia’s sister Yer slammed the door and Lia’s soul was frightened out of her body.

What do you think the sickness does? How does it work?
It makes Lia shake and fall down. It works because a spirit called a dab is catching her.

How severe is the sickness? Will it have a short or long course?
Why are you asking us those questions? If you are a good doctor, you should know the answers yourself.

What kind of treatment do you think the patient should receive? What are the most important results you hope she receives from this treatment?
You should give Lia medicine to take for a week but no longer. After she is well, she should stop taking the medicine. [...]

What are the chief problems the sickness has caused?
It has made us sad to see Lia hurt, and it has made us angry at Yer.

What do you fear most about the sickness?
That Lia’s soul will never return.

My only issue with the book is that chapters about Hmong history are inserted at cliff-hanger portions of Lia’s story, causing me to flip ahead and find out what happens to her. The history is worth reading in its own right and doesn’t need manufactured suspense to pull the reader through it.

Recommended to anyone who wants to learn about Hmong culture and history, medical communication at its worst and best, and the story of one much-loved child.

Available at Powell’s Books.

“Voices from the Inside” by David A. Karp and Gretchen E. Sisson

Sonia Connolly — Sun, 06 Mar 2011 06:01:31 +0000

Subtitle: Readings on the experiences of mental illness

I found this book because I was curious about Caroline Knapp’s writing after reading Gail Caldwell’s memoir about their friendship, and I read it because I wanted to learn about mental illness without its stereotype of causing violence. In fact, [v]iolence is not a symptom of psychotic illnesses such as bipolar disorder and schizophrenia.

Unfortunately, this book propagates rather than counters the stereotype. Many of the schizophrenic people’s stories include violent fantasies and actions. The essays also include violent treatment of people with mental illness in mental hospitals and prisons.

The book is intended for classroom use. Each essay is preceded by an introduction telling the reader how to interpret the essay, and followed by discussion questions which are clearly slanted toward preferred answers.

Caroline Knapp’s essay, “Denial and Addiction,” talks about the effortless contortions that make alcoholics’ drinking look acceptable to themselves. “Denial can make your drinking feel as elusive and changeable as Proteus, capable of altering form in the blink of an eye.” Calmly honest, she describes her own and others’ self-destructive behavior while addicted to alcohol.

Other essays describe the experiences of schizophrenic psychosis, depression, mania, taking Prozac for OCD, recovering from anorexia, and the aftermath of a spouse’s suicide.

While I applaud the authors’ venture into personal stories rather than aggregate statistics, I think academia has a long way to go in its attitudes toward people who have mental illnesses.

Available at Powell’s Books.

“Totally Tolerant” by Diane Webber and Laurie Mandel

Sonia Connolly — Sun, 31 Oct 2010 18:15:36 +0000

Subtitle: Spotting and stopping prejudice

A brief, photo-filled book with concrete advice for teens on embracing diversity and overcoming prejudice. Adults can benefit from this book as well.

As you can see on the cover, the photos strongly support the book’s message, showing people of a variety of skin colors, genders, and ethnicities.

Diversity is defined as difference. Tolerance is defined as “respect for everyone’s religion, gender, race, ethnicity, sexual orientation, and social class.” Stories about students from different backgrounds illustrate positive and negative experiences with tolerance and the effects they had.

From the back cover: “Everyone should at least make an attempt to stop bigotry. Otherwise, other people suffer because you don’t have the guts to stand up for what you believe in.” — Kevin, 14.

I’m encouraged to see the clear, positive approach this book takes toward spotting and stopping prejudice. It addresses bullying as well. I wish every teen (and every adult) would read and absorb its wisdom.

Available at Powell’s Books.

“Being Bodies” edited by Lenore Friedman & Susan Moon

Sonia Connolly — Tue, 16 Feb 2010 01:33:06 +0000

Recommended by: Catherine Holmes Clark, who also has a detailed site about her journey with environmental illness.

The sweet relief of reading about Buddhism from the perspective of women connected with their bodies took me by surprise. Until I read this book, I didn’t realize how much I’d been reading around a feeling of exclusion in The Wise Heart by Jack Kornfield and other books about Buddhism centered on male experience.

Thirty-three essays by different Buddhist women are divided into five sections:

Body as Suffering – bringing awareness to the experience of chronic illness.
Body as Nature – the feeling of failure because giving birth brought pain, even with awareness.
Body as Gender – helping a daughter remain aware as she navigates adolescent self-judgment of her body.
Body as Vehicle – dealing with difficulties through “no more struggle,” “using poison as medicine,” and “seeing whatever arises as enlightened wisdom.”
Body as Self – navigating addiction to alcohol, compulsive eating, and the loneliness of being embodied.

Images from the essays have woven themselves into my awareness.

At my cutting board chopping carrots or parsnips, I think of Darlene Cohen’s essay, “The Only Way I Know of to Alleviate Suffering.” She writes about helping people with arthritis discover that they can cut carrots by bringing their awareness to the details of their bodies’ experience with the board, the knife, and the carrots.

I recommend this book to anyone who wants to revel in the Buddhist perspective of women connected to their bodies.

Available at Powell’s Books.

“Lottery” by Patricia Wood

Sonia Connolly — Sun, 15 Nov 2009 01:30:18 +0000

Recommended by: Dave Hingsburger’s blog

The book begins, “My name is Perry L. Crandall and I am not retarded. Gram always told me the L stood for Lucky.” Perry is indeed lucky to be raised by his observant, patient Gram, since the rest of his family is avaricious and self-centered in the extreme.

He is also lucky to be employed at Holsted’s Marine Supply (where he does a great job), and to have a best friend Keith who lives on a sailboat in the harbor.

Perry makes the most of the opportunities that luck brings his way, with hard work, integrity, and the careful attention to detail taught by his Gram. He calls himself an auditor, a listener, as he observes the conversations and behaviors of the people around him. His commentary on their quirks is one of the pleasures of the book.

The dramatic plot, as Perry copes with winning $12 million in the lottery and other life events, is a vehicle for a clear moral about not labeling people. Over and over, Perry says he is not retarded, and that it is wrong to label others as well. His successes demonstrate the point.

In a book bringing such awareness to language, it was jarring to see the repeated use of “gyp” to mean “cheated” without comment or apology. The author may need to gain awareness of the discrimination suffered by the Gypsy/Rom peoples.

Overall, a thought-provoking read.

Available at Powell’s Books.

“Fox” by Margaret Wild and Ron Brooks

Sonia Connolly — Thu, 20 Aug 2009 04:50:37 +0000

Recommended by: Susan Reagel

With its full-page drawings, brief text, and animal characters in the Australian wilderness, “Fox” is in a children’s book format, but it is an adult book in disguise. How many children’s books begin with despair over loss and disability, move through partnership and betrayal, and end with the determination to do what it takes to surmount mistakes?

At first I was impatient with the hand-lettered text, some of it pasted in sideways on the page. I was soon drawn in to the active, expressive, textured drawings and the raw, honest, emotionally vivid story of one-eyed Dog, burnt-winged Magpie, and lonely, jealous Fox.

Find this book. Read it, look at it, take in its many-layered message of survival, compassion, and hope.

Available at Powell’s Books.