p53 and Me

by Shekinah N.C. Elmore, MD

NEJM May 24, 2018

This is an extraordinary Perspective  piece in the New England Journal by a young oncology resident who has the p53  mutation. This is seen in people with Li-Fraumani syndrome.

" A mutation like mine threatens to consume your whole imagination, especially with regards to the future. You start making crazy calculations..."

" Genetic knowledge is power only if both clinician and patient are equipped to move beyond a result and toward action, even if that merely means living well with what we know."

 She feels that people like her need to be studied not just for the data of their genomics but to help build programs for learning to teach people how to live with the uncertainties that their mutations will engender. 

This short essay is has many valuable teaching moments. She says, "I want as many of my days as possible to be untethered to the scans, biopsies and long waiting room sojourns. This is a cry from one who has been there for minimally disruptive medicine.

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Portraits of Resilience

by Daniel Jackson

MIT Press 2017

Amazon Link.

This is an important book. The students, faculty, and staff who are portrayed are bravely candid. 

The impetus for the book likely derived from and attempt to understand and impact on the high suicide rate of MIT students.  There are many reasons for this and it is not the purport of the book to delve into them.  Suicide rate is the tip of the iceberg of depression, anxiety and burnout and sometimes just bad luck that patients experience; and MIT with its rigorous curriculum may be a more stressful venue for students than most, if not all, other institutions of higher learning.

Portraits in Resilience is a must read for any in the caring or teaching professions.

Link to review. 

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Dying

by Cory Taylor, (2016)

Everybody dies too early or too late.  Sartre

Cory Taylor was a brave, articulate, outspoken Aussie 

who died in 2016, at age 61, of melanoma. This 

memoir is honest and raw. It describes a chaotic 

family with lots of dysfunction. 

At 141 pages, it's a short book that is a quick, easy 

educational read for care-givers and patients.

If you are interested see Google Docs Notes. 

The Mothers

by Brit Bennett

This is an important novel about the abortion with special reference to the African-American community.  It was written over a seven year period by an author who was 24 when it was published in late 2016.  It is a captivating story that gives insights into abortion, the black community, teenagers and the striving of some kids to choose a differentlife.


NY Times Review.

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.

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.

Full Times Article.

Also see: Wonder, The Movie

Redefining Realness My Path to Womanhood, Identity, Love & So Much More

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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.