The diaries of a remarkable young woman who was determined to live a meaningful and happy life despite her struggle with cystic fibrosis and a rare superbug—from age fifteen to her death at the age of twenty-five“An exquisitely nuanced chronicle of a terrified but hopeful young woman whose life was beginning and ending, all at once.”—Los Angeles Times Diagnosed with cystic fibrosis at the age of … Diagnosed with cystic fibrosis at the age of three, Mallory Smith grew up to be a determined, talented young woman who inspired others even as she privately raged against her illness. Despite the daily challenges of endless medical treatments and a deep understanding that she’d never lead a normal life, Mallory was determined to “Live Happy,” a mantra she followed until her death. Mallory worked hard to make the most out of the limited time she had, graduating Phi Beta Kappa from Stanford University, becoming a cystic fibrosis advocate well known in the CF community, and embarking on a career as a professional writer. Along the way, she cultivated countless intimate friendships and ultimately found love.
For more than ten years, Mallory recorded her thoughts and observations about struggles and feelings too personal to share during her life, leaving instructions for her mother to publish her work posthumously. She hoped that her writing would offer insight to those living with, or loving someone with, chronic illness.
What emerges is a powerful and inspiring portrait of a brave young woman and blossoming writer who did not allow herself to be defined by disease. Her words offer comfort and hope to readers, even as she herself was facing death. Salt in My Soul is a beautifully crafted, intimate, and poignant tribute to a short life well lived—and a call for all of us to embrace our own lives as fully as possible.
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5 stars for an emotional roller coaster of a book!!!!
This book is the story of Mallory Smith, who was diagnosed with Cystic Fibrosis at age 3. CF is a terminal, incurable, genetic disease of the lungs and digestive system. She kept a journal on her laptop. Before she had a lung transplant, she gave her mother her password. Her mother waited until Mallory died before opening her journal.
The journal was written by Mallory between the ages of 15 and 25, when she passed. She had a antibiotic resistant bacterial infection called B. cepacia. It destroyed her lungs and she was lucky enough to get a lung transplant. The B. cepacia destroyed the new lungs also. Not all CF patients get lung transplants. Mallory had a CF friend on the transplant list who died while waiting. Lung failure is the chief cause of death among CF patients. However, many CF patients do thrive after lung transplants.
I am the grandfather of two CF grandchildren . They gave me permission to talk about their experiences in comparison to Mallory. “Sarah” asked for fake names. She is 18, and while she does not have B. cepacia, she struggles with a Pseudomona that is antibiotic resistant, and unless a cure is found, may need a lung transplant someday. CF is a progressive disease and”Bob”, now 11, has better lung function than Sarah. Sarah also struggles with when to tell a date that she has CF. On the first date? Sarah also has CFRD(CF Related Diabetes) and sometimes decides to tell a date that she has diabetes.
There is a biographical note by Mallory’s mother, Diane, in the beginning of the book. Mallory would sometimes argue with her mother over daily treatments and storm into her room, slamming the door. I asked Sarah, “does this sound familiar? ” She laughed and said “Everyday.”
I was familiar with much of the medical terminology, but not all. Both my wife and I babysat our grandchildren 3 days a week until they moved out of state. We were trained in the manual CPT(chest percussion therapy), feeding Sarah through a feeding tube and administering home IV antibiotics. I was not aware of the new Phage technology, which has great promise in combating CF bacterial infections.
If you read this book, the end is real tear jerker. Both my CF grandchildren want to read it. Mallory’s up and downs are chronicled in great detail.
There is a YouTube video of Mallory that I have not watched.
Thank You Spiegel and Grau/Random House for sending me this book through NetGalley.
Update 5-20-2019: We drove down to be at “Sarah’s” secondary school graduation. She wants her fake name to be “Amanda Hugandkiss”. She has an unofficial boyfriend(too early to be official). He knows about her CF.
New York Times article. https://www.nytimes.com/2019/05/17/we…
In Salt in My Soul, Mallory Smith is bracingly candid and unflinching in her portrayal of life with chronic illness. Yet she also writes with warmth and humor about the everyday experiences of growing up as a young woman in search of meaning, purpose, and love while knowing her life will likely be cut short. This is a deeply moving book full of wisdom about health, life, and love — and about the importance of finding happiness wherever and whenever we can. Salt in My Soul broke my heart but also inspired me to make the most of every day.
Those of us fortunate enough to know the amazing Mallory Smith learned that no matter how sick, she would find escape from the prison of her illness to play water polo, to be prom queen, to go to Stanford, to graduate Phi Beta Kappa, and to know true love in her twenty-five years. With the strength of her parents, the support of her many friends, and her own great grit, Mallory lived her ambitions. Salt in My Soul is a beautiful, brave, unsparingly insightful account of a courageous girl who becomes a woman warrior and fights for her life while living it fully.
Brilliant, compassionate, and radically optimistic, Salt in My Soul captures the heartbreaking beauty of being alive. I feel fuller, more educated, and more human having read this book. Mallory Smith may have salt in her soul, but she’s all firecracker. She is a gift and so is her writing — every grain of it.
With spicy wit and brutal honesty, Salt in My Soul reveals the heartache and courage of a young woman who always knew that her life would be cut short by a chronic disease. Read this memoir and you’ll be astonished by Mallory’s bravery and uplifted by her vivacious spirit.