Tuesday, December 5, 2017

Spy of the First Person (2017)

This  Final Work by Sam Shepard Reveals His Struggle With Lou Gehrig’s Disease

Shepard explored his condition [ALS] through his writing — in vivid, precise prose that transformed his worsening symptoms into something akin to poetry.  It is an unvarnished, intimate portrait of a man facing the end of his life, as he reflects on his past and observes how his own body has betrayed him.

When Shepard began working on “Spy of the First Person” in early 2016, he could still write by hand. But a few months later, as his illness worsened, that became impossible. So his daughter, Hannah, bought him a recorder, and would set it up by him and leave him to dictate in the garden of his home in Kentucky.

Sam Shepard, NY Times Obit.

Monday, November 27, 2017

Wonder

Why ‘Wonder,’ the Movie, Can’t Best the Book It’s Based On
By MARIA RUSSO NOV. 24, 2017

Like most people who love the best-selling book “Wonder,” I’ve been thrilled by the success of the movie version. It captures beautifully the book’s central premise, that we should choose to be kind and inclusive to people like Auggie Pullman, the protagonist, who was born with facial  deformities that are at first shocking to look at. The young actor Jacob Tremblay, wearing mask like makeup that rearranges his features, gracefully inhabits the role of Auggie not only by showing his pain and vulnerability, but also by convincing us of one of the secret weapons of R. J. Palacio’s  book: Auggie is fun, clever and generous, and the kids who call him “the freak” actually have the most to gain by his friendship. So I feel gratified that the movie seems to be catching on — but also, I’ll admit, a bit wary.



Also see: Wonder, The Movie

Thursday, November 2, 2017

Reclaiming Resilience

-->
I was in the seventh grade when I first began to identify as trans and express my gender identity as a girl...This shift in my personal aesthetic made me feel good about my body, confident in my appearance and at ease in social settings where my peers were also exploring, changing and growing.


Janet Mock was a black and Native Hawaiian trans girl from a single-parent home. I was not naïve. I knew that struggle was part of my coming of age, so I wore a smile every day as part of my armor. I didn’t want anyone to see that I was in pain, that I felt like I did not belong and that my body, my clothing, my being was wrong.

From NY Times Op-Ed piece 2/23/2017

Janet Mock’s first book, Redefining Realness, is a brilliant, raw, educational journey with a transwoman that takes her from being a child and follows her through hormone therapy and transitional surgery in Thailand.  It is important reading for educators, parents, health professionals and anyone with an open mind.  I listened to the Audible book and that makes the story even more poignant as Janet narrates her own story.

Tuesday, September 5, 2017

Beyond the Thin Blue Air

-->
by Lu Spinney

This important and riveting  memoir recounts the devastating injury sustained by the author’s son, Miles, a handsome, bright, and adventurous 29-year-old who crashed while snowboarding in the Alps.

About her book, the author writes, “there is a strange contradiction in writing about a private experience and making it public. I’ve just written a book about a subject that for five years I not only avoided but found bitterly painful to talk about. To discuss my son Miles’s situation with anybody other than family or closest friends felt like a betrayal of his privacy; it was too intensely private to share. And now I’ve written a book about it.

The book reflects on traumatic brain injury, minimal conscious states, long-term care, quality of life, the effects on the family of the injured person and much more.  It will be valuable reading for any health care worker and others interested in these issues.

Monday, July 24, 2017

LIGHTS ON, RATS OUT (2017)

-->
A Memoir
by Cree LaFavour

“Lights On, Rats Out is unlike anything I’ve ever read―a powerfully, staggeringly honest book that is excruciating in places, and also completely haunting. LeFavour’s intimate account of her relationship with her psychiatrist is intensely compelling, forthright, and brave. Did he overstep? Was he somehow pulled in by her beyond what was therapeutically appropriate or helpful? This is a fascinating memoir in a category of its own.”―Dani Shapiro


See NY Times book review: An Odyssey Through Self-Harm and Out the Other Side




A Little Life, by Hanya Yanagihara is an important novel in the context of self-harm behavior.

Thursday, April 13, 2017

Falling Ill

by C. K. Williams (Farrar, Straus & Giroux)
This posthumous collection of poems, written as the author was dying, of multiple myeloma, is a gentle but unflinching confrontation with mortality. Beginning with the moment of diagnosis (“interesting no?”), and signing off with “I want to wish you goodbye but don’t dare,” Williams records the progress of his disease and his halting acceptance of the end of life. A steady lilt, alternately peaceful and hallucinatory, presides over the work, which is devoid of punctuation except for frequent question marks. Uniform in construction, with five three-line stanzas, the poems feel less like a series than like a single valedictory utterance.

Sunday, February 26, 2017

Born on the Fourth of July (1976)

In the mid 1960s, suburban New York teenager Ron Kovic enlists in the Marines, fulfilling what he sees as his patriotic duty. During his second tour in Vietnam, he accidentally kills a fellow soldier during a retreat and later becomes permanently paralyzed in battle. Returning home to an uncaring Veterans Administration bureaucracy and to people on both sides of the political divide who don't understand what he went through, Kovic becomes an impassioned critic of the war.

DJE:  This is a powerful book about the Vietnam War, American politics, trauma, paraplegia, activism.  The writing is amazing and memorable.  It is a cry from the heart. 



Tuesday, February 7, 2017

Family Matters (2002)

by Rohinton Mistry
Warm, humane, tender and bittersweet are not the words one would expect to describe a novel that portrays a society where the government is corrupt, the standard of living is barely above poverty level and religious, ethnic and class divisions poison the community. Yet Mistrys compassionate eye and his ability to focus on the small decencies that maintain civilization, preserve the family unit and even lead to happiness attest to his masterly skill as a writer who makes sense of the world by using laughter, as one of his characters observes. Bombay in the mid-1990s, a once-elegant city in the process of deterioration, is mirrored in the physical situation of elderly retired professor Nariman Vakeel, whose body is succumbing to the progressive debilitation of Parkinsons disease. Narimans apartment, which he shares with his two resentful, middle-aged stepchildren, is also in terrible disrepair. But when an accident forces him to recuperate in the tortuously crowded apartment that barely accommodates his daughter Roxana, her husband and two young boys, family tensions are exacerbated and the limits of responsibility and obligation are explored with a full measure of anguish. In the ensuing situation, everyones behavior deteriorates, and the affecting secret of Narimans thwarted lifetime love affair provides a haunting leitmotif. Light moments of domestic interaction, a series of ridiculous comic situations, ironic juxtapositions and tenderly observed human eccentricities provide humorous relief, as the author of A Fine Balance again explores the tightrope act that constitutes life on this planet. Mistry is not just a fiction writer; he's a philosopher who finds meaning-indeed, perhaps a divine plan in small human interactions. This beautifully paced, elegantly expressed novel is notable for the breadth of its vision as well as its immensely appealing characters and enticing plot.  (from Amazon)

DJE:  I loved this book.  It hearkens back to King Lear.  An old man and his daughters.  Family Matters is a commentary on ageing in society and it shows how things are not that different in India than the U.S.  It's also an introduction to the Parsi community in India (a small but influential group).

Life As We Know It (1996)

Berube and Jamie (2014)
by Michael Berube
When Michael Berube's second son Jamie was born with Down syndrome, life as he had known it was gone. Suddenly abstract questions the successful academic and author had been too busy to think about were thrust before him. Berube tells how he and his wife came to know this astonishing new person as their son, an individual like their other son and yet who, to the world, was not an individual but the syndrome itself. Berube intersperses the story of Jamie's development with a critical analysis of society's response to disability, the inadequacies of American health care, and a discussion of such issues as eugenics and the priority society gives to budgeting for the disabled.

Sunday, January 8, 2017

Madness: a memoir (2013)

by  Kate Richards

This is an extraordinary book. Richards' style is so immediate that it draws you right into her mind, and it’s kind of terrifying to be there. The language is often very beautiful and gives one the opportunity to learn a lot about the Australian health care system. 

I thought the book should have ended a few chapters before it did — the last few felt tacked on, as though she was stretching for effect, and I wanted it to end with the moment of absolute silence, though I understand why she felt she needed to go on, to provide a kind of closure.