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Salt in My Soul: An Unfinished Life
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
“Captures the heartbreaking beauty of being alive.”—Beck Dorey-Stein, New York Times bestselling author of From the Corner of the Oval
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.
Advance praise for Salt in My Soul
“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. It broke my heart but also inspired me to make the most of every day.” —Will Schwalbe, New York Times bestselling author of The End of Your Life Book Club
“A beautiful, brave, unsparingly insightful account of a courageous girl who becomes a woman warrior and fights for her life while living it fully.” —Eric Lax, author of The Mold in Dr. Florey’s Coat; x 8.25 inches
“Captures the heartbreaking beauty of being alive.”—Beck Dorey-Stein, New York Times bestselling author of From the Corner of the Oval
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.
Advance praise for Salt in My Soul
“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. It broke my heart but also inspired me to make the most of every day.” —Will Schwalbe, New York Times bestselling author of The End of Your Life Book Club
“A beautiful, brave, unsparingly insightful account of a courageous girl who becomes a woman warrior and fights for her life while living it fully.” —Eric Lax, author of The Mold in Dr. Florey’s Coat; x 8.25 inches
320 pages, Hardcover
Published March 12, 2019
196 people are currently reading
3446 people want to read
About the author
Mallory Smith
4 books64 followersMallory Smith, who grew up in Los Angeles, was a freelance writer and editor specializing in environmental, social justice, and healthcare-related communications. She graduated Phi Beta Kappa from Stanford University and worked as a senior producer at Green Grid Radio, an environmental storytelling radio show and podcast. Her radio work was featured on KCRW, National Radio Project, and State of the Human. She was a fierce advocate for those who suffered from Cystic Fibrosis, launching the viral social media campaign Lunges4Lungs with friends and raising over $5 million with her parents for CF research through the annual Mallory’s Garden event. She passed away at the age of twenty-five on November 15, 2017, two months after receiving a double lung transplant. Mallory’s Legacy Fund has been established in her memory at the Cystic Fibrosis Foundation.
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January 17, 2024
Updated Jan 16, 2024, scroll to bottom
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...
1-16-24 update:
In 2000, when my 1st grandchild was diagnosed with CF, we asked our daughter about getting tested for the CF gene. She advised against it. Her CF doctor said that we were past childbearing age, the test was very expensive, and our insurance would not pay for any of it. I spoke to cousins in Ireland and none of them knew anyone in the family with CF. in 2019, I found a genealogical testing company that would test for the most common version of the CF gene(there are about 1,000 mutations). The most common is the one that both of my CF grandchildren have. I tested positive for the CF gene and my wife tested negative. For anyone reading this, Ireland has the most CF patients per capita in the world.
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...
1-16-24 update:
In 2000, when my 1st grandchild was diagnosed with CF, we asked our daughter about getting tested for the CF gene. She advised against it. Her CF doctor said that we were past childbearing age, the test was very expensive, and our insurance would not pay for any of it. I spoke to cousins in Ireland and none of them knew anyone in the family with CF. in 2019, I found a genealogical testing company that would test for the most common version of the CF gene(there are about 1,000 mutations). The most common is the one that both of my CF grandchildren have. I tested positive for the CF gene and my wife tested negative. For anyone reading this, Ireland has the most CF patients per capita in the world.
March 8, 2019
This is a very special book culled from the journals of Mallory Smith, a cystic fibrosis patient who died at the age of 25 in November 2017. As her father Mark said at her memorial, from a little girl he knew Mallory was an old soul. She was extremely intelligent, and they shared a love of reading and would have buddy reads together. When Mallory was 9 she suddenly refused to perform her daily cystic fibrosis treatments. Dad came home from work early and confronted her honestly: "Mallory, your mother and I do not ask you to do your treatments so you'll feel better. We do not ask you to do them so you won't get sick. We ask you to do them so you won't die. If you don't do your treatments...you will die." Since that day she never refused treatment.
Her writing is exquisite; Mallory was clearly meant to be a writer. When she graduated Stanton University, she took on some part-time writing jobs because of the time limitations of managing her illness. She always meant to write a book of her own. However, in the end, her journal of ten years amounting to 2,500 pages wound up becoming a gift to her grieving family, friends and the world. She never let her parents read a word of it until she went in for her lung transplant operation. She finally gave the document password to her mother Diane (in case she didn't survive the surgery). Diane opened Mallory's journal on the day of her daughter's memorial, hoping to find something she could share. Upon reading it, Diane realized that her daughter had left her an unexpected and most precious gift. Mallory left instructions to edit out anything that would be hurtful to someone, violate a confidence, or reveal intimate details of her romantic life. Otherwise, she hoped that her words would help people enduring the many challenges of CF. She also fretted deeply about her family dealing with the grief of losing a daughter and a sister. She left a "WHEN I DIE" note thanking her parents for everything they did for her to keep her alive and happy.
Mallory was a California girl who loved surfing. She vacationed in Hawaii often, finding the environment particularly therapeutic. As Mallory explains in her journals, salt is a crucial part of the cystic fibrosis condition. There is an imbalance of salt in and outside of the cells due to broken proteins. CF patients lose a great deal of salt in their sweat. She warmly recalls swimming in the Southern California and Hawaiian oceans for her health and muses that "there's salt in my soul."
Mallory shows a maturity beyond her years in her writing, a fact which mom Diane attributes to the realities of her illness. Mallory has a grasp for the minute details of her medical condition. She explains in great detail the hours of each day taken up by CF treatment. She is susceptible to bacteria so everything must be clean. She endures fevers, stomach problems, shortness of breath, spitting up large amounts of blood...to name several of her CF symptoms. However, through it all Mallory never waivers from living her life to the fullest, and lighting up the lives of everyone around her. This was made very clear by the people who spoke about Mallory at her memorial which can be seen on YouTube.
The climax of her journal entries ending when she was hospitalized for the final time was an emotional journey I will never forget. When Mallory is in the hospital dying, the journal entries are taken over by her mother Diane, dad Mark, boyfriend Jack, and Aunt Meryl to finish out the story. This was a remarkably honest, inspiring, very emotional and beautiful memoir I will never forget. As I touched on before, I was so moved by Mallory's spirit that I found her memorial on YouTube (which is over two hours long). If you want to have a good, therapeutic cry, watch it after finishing the book to hear more personal stories about Mallory and celebrate her life.
Thank you very much to Random House who provided an advance reader copy via NetGalley.
Her writing is exquisite; Mallory was clearly meant to be a writer. When she graduated Stanton University, she took on some part-time writing jobs because of the time limitations of managing her illness. She always meant to write a book of her own. However, in the end, her journal of ten years amounting to 2,500 pages wound up becoming a gift to her grieving family, friends and the world. She never let her parents read a word of it until she went in for her lung transplant operation. She finally gave the document password to her mother Diane (in case she didn't survive the surgery). Diane opened Mallory's journal on the day of her daughter's memorial, hoping to find something she could share. Upon reading it, Diane realized that her daughter had left her an unexpected and most precious gift. Mallory left instructions to edit out anything that would be hurtful to someone, violate a confidence, or reveal intimate details of her romantic life. Otherwise, she hoped that her words would help people enduring the many challenges of CF. She also fretted deeply about her family dealing with the grief of losing a daughter and a sister. She left a "WHEN I DIE" note thanking her parents for everything they did for her to keep her alive and happy.
Mallory was a California girl who loved surfing. She vacationed in Hawaii often, finding the environment particularly therapeutic. As Mallory explains in her journals, salt is a crucial part of the cystic fibrosis condition. There is an imbalance of salt in and outside of the cells due to broken proteins. CF patients lose a great deal of salt in their sweat. She warmly recalls swimming in the Southern California and Hawaiian oceans for her health and muses that "there's salt in my soul."
Mallory shows a maturity beyond her years in her writing, a fact which mom Diane attributes to the realities of her illness. Mallory has a grasp for the minute details of her medical condition. She explains in great detail the hours of each day taken up by CF treatment. She is susceptible to bacteria so everything must be clean. She endures fevers, stomach problems, shortness of breath, spitting up large amounts of blood...to name several of her CF symptoms. However, through it all Mallory never waivers from living her life to the fullest, and lighting up the lives of everyone around her. This was made very clear by the people who spoke about Mallory at her memorial which can be seen on YouTube.
The climax of her journal entries ending when she was hospitalized for the final time was an emotional journey I will never forget. When Mallory is in the hospital dying, the journal entries are taken over by her mother Diane, dad Mark, boyfriend Jack, and Aunt Meryl to finish out the story. This was a remarkably honest, inspiring, very emotional and beautiful memoir I will never forget. As I touched on before, I was so moved by Mallory's spirit that I found her memorial on YouTube (which is over two hours long). If you want to have a good, therapeutic cry, watch it after finishing the book to hear more personal stories about Mallory and celebrate her life.
Thank you very much to Random House who provided an advance reader copy via NetGalley.
April 24, 2019
5 Stars - ALL FOR MALLORY
SALT IN MY SOUL: AN UNFINISHED LIFE is Mallory Smith's story in her own words. Published posthumously from her journal at her request, Mallory gives the reader a first hand view of her tumultuous short life and battle with Cystic Fibrosis. Diagnosed with the "deadliest strain of the deadliest bacteria known to CF lungs" caused an antibiotic resistant superbug in her system that ultimately ended her young 25 years of life on November 15, 2017....post lung transplant.
Cystic Fibrosis is a chronic genetic illness that affects many parts of the body, but settles in the lungs. It is progressive, with no cure yet this bright, beautiful young woman was a tower of strength enduring an unbelievable roller coaster of emergency hospital stays, dependency on an ominous number of daily drugs, not to mention IV's, AND STILL, her motto was "Live Happy".
Follow the journey of this amazing, courageous young Stanford Graduate who lived an active life....fought environmental destruction and "the system" of bureaucratic incompetence and corporate miserliness despite her limited time on this earth....ALL WHILE FIGHTING FOR SURVIVAL WITH LIMITED LUNG FUNCTION.
There is a podcast by Mallory's mother discussing this book and the upcoming documentary already in the works.
***Arc was a "wish granted" from Random House Publishing-Random House via NetGalley in exchange for review***
August 11, 2019
What a sad, beautiful book. Mallory Smith may have only had twenty five years on this Earth but she packed more living and love into them than some people do in a lifetime. Highly recommended.
February 15, 2019
Full disclosure, I received a free ARC from NetGalley and the publisher in exchange for an honest review. It has not influenced my opinion.
As the parent of a child with CF, this is the book I wish all my friends would read. This not only conveys my fears for my child as his parents, but also my hopes and dreams for him to be a "normal" teenager, have his own hopes and dreams, fall in love. All the things that get called into question for the future when a CF diagnosis is made.
The writing is made up of lightly edited entries written by Mallory Smith between the ages of 15 and 25. The one thing that really stood out for me was how normal it was. Anyone who has actually been a teenage girl can relate to what Mallory writes about -- college and career dreams, crushes, time management -- but what we can't relate to -- at least on the same level -- is how she is running out of time to fulfill her dreams. Interspersed with her journal entries, especially as the end gets closer, are memories and memorials written by those who knew and loved her, including her parents, boyfriend, and the doctors who helped her fight for her fullest life.
The CF community is a small one, and while I knew of Mallory, being able to read her experiences from her perspective, gives me a new glimpse as to what it's like to actually live with CF and not just care for someone with CF. I can only hope I do as good a job parenting as Mallory's parents did.
I really think this book can be see as this generation's Alex, and Mallory definitely burned as bright. I hope her legacy can have the same affect as Alex's does, and really bring more awareness for CF and can hopefully help push phage research to the next level.
As the parent of a child with CF, this is the book I wish all my friends would read. This not only conveys my fears for my child as his parents, but also my hopes and dreams for him to be a "normal" teenager, have his own hopes and dreams, fall in love. All the things that get called into question for the future when a CF diagnosis is made.
The writing is made up of lightly edited entries written by Mallory Smith between the ages of 15 and 25. The one thing that really stood out for me was how normal it was. Anyone who has actually been a teenage girl can relate to what Mallory writes about -- college and career dreams, crushes, time management -- but what we can't relate to -- at least on the same level -- is how she is running out of time to fulfill her dreams. Interspersed with her journal entries, especially as the end gets closer, are memories and memorials written by those who knew and loved her, including her parents, boyfriend, and the doctors who helped her fight for her fullest life.
The CF community is a small one, and while I knew of Mallory, being able to read her experiences from her perspective, gives me a new glimpse as to what it's like to actually live with CF and not just care for someone with CF. I can only hope I do as good a job parenting as Mallory's parents did.
I really think this book can be see as this generation's Alex, and Mallory definitely burned as bright. I hope her legacy can have the same affect as Alex's does, and really bring more awareness for CF and can hopefully help push phage research to the next level.
December 16, 2018
This book will make you stop, think and realize how lucky you are to have a healthy set of lungs and a reasonable expectation of living a full life. The author, Mallory Smith, didn't have either luxury. But that didn't stop her. She chose to "live happy", and that message and the way she conveys it, with wisdom and humor and not a iota of preachiness, makes this book one you'll never forget. Her memoir, published after her death from CF and a superbug infection that ravaged her new lungs after a double lung transplant, is astonishing. I came to know Mallory when she only had a month to live, and I was honored to be asked by her parents to write the post-script in Mallory's memoir. Every life is special, but Mallory was one of the brightest lights in the universe. When I look at the stars, I still think of her and you will too when you read what she has to share with us all.
April 30, 2019
“Sixty-five Roses”. Back in 1965, the story goes, a four-year-old boy heard the name of his congenital disease, cystic fibrosis. What he thought he heard was, “65 roses.” Since that time, 65 roses, or LXV, has come to symbolize this devastating genetic illness that affects 30,000 individuals in the US, according to the Cystic Fibrosis Foundation.
Until I read Mallory Smith’s memoir, Salt in My Soul , I knew very little about this condition. When I read a review of the book in our local newspaper, I was impressed and determined to read it. What an incredible journey! Like many patients with chronic illnesses, Mallory became very fluent in medical terminology and understanding of the workings of her body. She knew when she needed to go to the ER. She understood her need for certain medications, for rest, for proper diet, and for exercise. And for salt.
Cystic fibrosis involves salt loss. Mallory explains that too much water or too much salt loss can cause water intoxication unless one has enough salt in her food. From the time she was a little girl, she noticed that swimming in the ocean had therapeutic effects. Being a California girl, she had many opportunities to swim. Her family also took many trips to Hawaii, where she loved to surf. She wrote that she felt there was “salt in her soul.”
From the time she was very young, Mallory had to endure daily treatment. At age nine, she threw a tantrum and refused to comply. Her dad had explain to her in no uncertain terms that without her treatments she wouldn’t just get sick; she would die. From that day forward, Mallory did her treatments.
Mallory Smith’s memoir was edited by her mother and others from more than 2,500 pages of her journal, which she started keeping at the age of 15 until just before she died at the age of 25. There is plenty of medical information, to be sure. She spent a lot of time in and out of emergency rooms and ICUs, as she had acute episodes of hemoptysis (coughing up blood) and chronic infections. There was always the fear she would lose too much blood. Fear that the infection would morph into a superbug, resistant to all antibiotics. Fear that when she became sick enough, she would not qualify for double lung transplant or that it would be too late.
But Mallory’s life was so much more than a chronicle of a sick person. She was a tremendously bright young woman. She attended Stanford University and graduated, despite missing many hours of class due to hospitalizations. She was free-lance writer, a staunch advocate for the environment and for social justice issues, and a champion for CF research. She played volleyball and water polo. She swam and surfed. She loved to read.
Most of all, Mallory loved her brother Micah, her parents, grandparents, and her boyfriend. She was so, so grateful for their love and support. If ever there is a statement for insurance coverage for patients with pre-existing conditions, this book is it, because, my gosh, the costs for this illness for this one individual must be astounding! Not to mention the care out of the hospital when the young adult is unable to work or attend school. But Mallory’s family and friends were there for her, always. At times, she felt unworthy. At times, she felt like a big baby. At times she felt strong and independent. Doing yoga grounded her. She loved spending time with friends. She loved being at the ocean. She found comfort being with the family’s dog. Many times, she knew her own limits. At other times, she pushed the limits because living life was necessary despite the consequences.
Mallory had an incredible team of doctors and medical staff supporting her as well. She felt blessed. She felt loved. I knew from the onset how this book would end. There are many emotional highs and lows in this book. The final scenes are difficult, others about saying their goodbyes. I didn’t expect to learn as much as I did. What I didn’t learn from the journal, I looked up as I read, because there are details that aren’t explained. What a complex, awful disease! But if anyone could handle it, Mallory and her family certainly gave it the old college try. Her life, her fight against CF gives hope to other patients with CF. What better gift could anyone give?
Thanks to NetGalley and Spiegel & Grau for providing me with a review copy in exchange for my honest review.
5 stars
Until I read Mallory Smith’s memoir, Salt in My Soul , I knew very little about this condition. When I read a review of the book in our local newspaper, I was impressed and determined to read it. What an incredible journey! Like many patients with chronic illnesses, Mallory became very fluent in medical terminology and understanding of the workings of her body. She knew when she needed to go to the ER. She understood her need for certain medications, for rest, for proper diet, and for exercise. And for salt.
Cystic fibrosis involves salt loss. Mallory explains that too much water or too much salt loss can cause water intoxication unless one has enough salt in her food. From the time she was a little girl, she noticed that swimming in the ocean had therapeutic effects. Being a California girl, she had many opportunities to swim. Her family also took many trips to Hawaii, where she loved to surf. She wrote that she felt there was “salt in her soul.”
From the time she was very young, Mallory had to endure daily treatment. At age nine, she threw a tantrum and refused to comply. Her dad had explain to her in no uncertain terms that without her treatments she wouldn’t just get sick; she would die. From that day forward, Mallory did her treatments.
Mallory Smith’s memoir was edited by her mother and others from more than 2,500 pages of her journal, which she started keeping at the age of 15 until just before she died at the age of 25. There is plenty of medical information, to be sure. She spent a lot of time in and out of emergency rooms and ICUs, as she had acute episodes of hemoptysis (coughing up blood) and chronic infections. There was always the fear she would lose too much blood. Fear that the infection would morph into a superbug, resistant to all antibiotics. Fear that when she became sick enough, she would not qualify for double lung transplant or that it would be too late.
But Mallory’s life was so much more than a chronicle of a sick person. She was a tremendously bright young woman. She attended Stanford University and graduated, despite missing many hours of class due to hospitalizations. She was free-lance writer, a staunch advocate for the environment and for social justice issues, and a champion for CF research. She played volleyball and water polo. She swam and surfed. She loved to read.
Most of all, Mallory loved her brother Micah, her parents, grandparents, and her boyfriend. She was so, so grateful for their love and support. If ever there is a statement for insurance coverage for patients with pre-existing conditions, this book is it, because, my gosh, the costs for this illness for this one individual must be astounding! Not to mention the care out of the hospital when the young adult is unable to work or attend school. But Mallory’s family and friends were there for her, always. At times, she felt unworthy. At times, she felt like a big baby. At times she felt strong and independent. Doing yoga grounded her. She loved spending time with friends. She loved being at the ocean. She found comfort being with the family’s dog. Many times, she knew her own limits. At other times, she pushed the limits because living life was necessary despite the consequences.
Mallory had an incredible team of doctors and medical staff supporting her as well. She felt blessed. She felt loved. I knew from the onset how this book would end. There are many emotional highs and lows in this book. The final scenes are difficult, others about saying their goodbyes. I didn’t expect to learn as much as I did. What I didn’t learn from the journal, I looked up as I read, because there are details that aren’t explained. What a complex, awful disease! But if anyone could handle it, Mallory and her family certainly gave it the old college try. Her life, her fight against CF gives hope to other patients with CF. What better gift could anyone give?
Thanks to NetGalley and Spiegel & Grau for providing me with a review copy in exchange for my honest review.
5 stars
March 2, 2020
This memoir is written so beautifully. Mallory struggles with her disease, yet the way she embraces living her life as she does, is remarkable. This is not a perfect book....the style of real journal entries is not my favorite. But this book is probably more emotional and more personally affecting than any other book could be.
This is Mallory’s story, moving, inspiring and terribly sad. It’s also a story that is so very close to home for me, I almost didn’t read it. But it’s the first time I’ve had the opportunity to read about a CF sufferer, a condition that my hubby also has. So I had to.
It was painful, and eye-opening, and hopefully has given me more insight into how it might feel to be him. As heartbreaking as it was, for me, it felt necessary.
This is Mallory’s story, moving, inspiring and terribly sad. It’s also a story that is so very close to home for me, I almost didn’t read it. But it’s the first time I’ve had the opportunity to read about a CF sufferer, a condition that my hubby also has. So I had to.
It was painful, and eye-opening, and hopefully has given me more insight into how it might feel to be him. As heartbreaking as it was, for me, it felt necessary.
July 9, 2021
I’ll never be able to do any justice to this book, incredibly touching. It made me experience all possible human emotions ( a real emotional roller coaster ). She walked me through CF and transplantation. I’ll never be the same that it the end
March 14, 2021
Edited journal version of the inner thoughts and life of Mallory Smith, a teenager who was diagnosed with cystic fibrosis. Brilliant, Inspiring, Compelling, Poignant, and intensely hard to read, It will break your heart while encouraging you to live each day as fully as possible.
March 4, 2019
I received a copy of this book from the publisher via Edelweiss+ and NetGalley in exchange for an honest review.
Immensely positive and determined to live her best life, even in the face of cystic fibrosis and rare bacteria B. cenocepacia, Mallory Smith is a girl everyone loved. From the beginning readers know Mallory tragically dies young; however, it is how she lived her life that will inspire readers. Her "live happy" mantra carries her through frustrating hospital stays and discharges and helps her remain focused on really living. In reading Mallory's most personal thoughts, readers are given a glimpse into the life of someone who struggles with a chronic illness, though not always visible on the outside.
THOUGHTS: Pair this nonfiction text with the fiction Five Feet Apart which will be even more popular with the March 2019 movie release. Excellent addition for high school nonfiction collections where memoirs and medical stories are popular.
Immensely positive and determined to live her best life, even in the face of cystic fibrosis and rare bacteria B. cenocepacia, Mallory Smith is a girl everyone loved. From the beginning readers know Mallory tragically dies young; however, it is how she lived her life that will inspire readers. Her "live happy" mantra carries her through frustrating hospital stays and discharges and helps her remain focused on really living. In reading Mallory's most personal thoughts, readers are given a glimpse into the life of someone who struggles with a chronic illness, though not always visible on the outside.
THOUGHTS: Pair this nonfiction text with the fiction Five Feet Apart which will be even more popular with the March 2019 movie release. Excellent addition for high school nonfiction collections where memoirs and medical stories are popular.
April 8, 2020
I’m really struggling with this book and it’s motives. First, it was published posthumously by the author’s mother. The mother that kept blinders on her daughter during the end stage of her suffering with Cystic Fibrosis. The mother that pumped false hope into her daughter and, at least from my vantage point, is responsible (at least in part) for the mental anguish her daughter felt as reality caught up to her too late in her battle. This poor soul was also so acutely naive as to just how flipping entitled she really was. Yes, disease is a great “equalizer”. However, this young woman could just hop on an airplane to convalesce in Hawaii quite frequently. That is not common for the average human. Plus, her family had countless connections with people in high places which gave her advantages that other patients didn’t have.
I really commiserate with Mal. I feel she was wronged and artificially prolonged by her mother. The three stars are for my pity of this sad life and also in thanks for the genuine manner in which she shared her innermost thoughts in her journals. Two stars shaved off because purchasing this book benefits those sho survived her and not actually her. Sad.
I really commiserate with Mal. I feel she was wronged and artificially prolonged by her mother. The three stars are for my pity of this sad life and also in thanks for the genuine manner in which she shared her innermost thoughts in her journals. Two stars shaved off because purchasing this book benefits those sho survived her and not actually her. Sad.
This entire review has been hidden because of spoilers.
March 1, 2019
Powerful book and so worth the read, especially for those of us with chronic illnesses.
March 9, 2019
What a courageous and special soul Mallory was during her lifetime and, as this book shows, after her lifetime as well. My initial interest in this book stems from knowing someone whose daughter has CF. I was curious to see what having this in your life is like for all involved, but especially the one afflicted. I will say that the initial part of the book was more like peeking into your daughter's (or a young girl's) diary so it didn't grab me from the start but it was really helpful to show us the Mallory before all the difficulties really got started. From those early entries, we got a good sense of her courage, spirit and love all of which really play hard during the remainder of the book. Despite knowing what ultimately happens, I was rooting for her and her family up until the end. Heartbreaking. While her life was lost, the ending left me with hope for those suffering from this horrible disease because of Mallory and her family (I don't want to spoil some of the ending) and how she continues to live on in memory and research.
I gave this a 5 stars, not because it was written so well, although I appreciated that the diary format really gave us Mallory's perspective, but the overall story. Touching, heartbreaking and some hope.
Thank you to Netgalley and Random House for an advanced e-copy of this book.
I gave this a 5 stars, not because it was written so well, although I appreciated that the diary format really gave us Mallory's perspective, but the overall story. Touching, heartbreaking and some hope.
Thank you to Netgalley and Random House for an advanced e-copy of this book.
December 10, 2020
a great memoir about a person with cystic fibrosis; maybe its the way it was written that got me disengaged in the story a few times.
August 12, 2022
A tough read, but well worth it. The film is really well done also. Mallory was an amazing woman and will continue to inspire people forever. I knew nothing about CF before reading this and phage therapy and many other things. I learned a lot, but mostly how grateful we should all be for every day we’re alive and for family and friends.
January 21, 2022
Conflicted feelings on this one.
A person born with cystic fibrosis (CF) in the 2020s has a life expectancy of about 45 years, presuming standard of care therapies and healthcare compliance from a young age. There's a lot that goes into that presumption. When I was in medical school I had the opportunity to work with a pediatric pulmonologist who had spent decades running a CF clinic and had a lot of insight into the toll CF takes on families. I learned that (in the US) many families of CF patients can't afford all the expenses needed for CF therapy, but paradoxically they make too much money to qualify for Medicaid that covers these expenses, so often they drop their household incomes to be able to qualify, which comes with many other sacrifices. I learned about the money it costs even to feed one or more children with CF because of their high caloric needs and difficulty in maintaining their weight. I learned about how nuclear families of CF patients often disintegrate in the wake of the disease, and I saw that firsthand. One of my most memorable patients in medical school in the 2010s was a 6-year-old with CF who was being raised by extended family because neither parent was around. Unfortunately, their extended family were not adequate caretakers. They would frequently miss clinic appointments, miss medication refills, most likely miss home therapies, and when they did bring the child into clinic for a routine visit and report the child was doing well, the child would be in such bad shape that they would require ICU hospitalization for weeks. I remember the meticulous documentation I would make in my notes that would later be cosigned by the attending physician because the child was under child protective services investigation and I fervently wished these notes might help protective services whisk the child away into a home that would provide them better care, but alas, that never happened. This child died of CF at age 7, akin the life expectancy of CF in the 1950s, when the CF-causing gene hadn't even been discovered and there were no adequate therapies for the disease.
Smith's (likely heavily-edited) memoirs are a tragic story. Despite a very supportive family the best medical care (furnished by parents with much more financial resources than most, and high-up connections that helped secured her lung transplantation paid for by insurance and an eleventh hour attempted experimental therapy), she had a very aggressive disease course and died at 25 due to complications of a multidrug resistant infection shortly following lung transplantation. It's clear that Smith knew of her own mortality and saw the reality as many of her friends with CF passed away, and I feel sad that her parents continued to delude her about how sick she was at the end. But for a CF patient, she lived an incredibly charmed life that's not attainable by most. I think she knew that she was very lucky but didn't quite grasp the full perspective.
A person born with cystic fibrosis (CF) in the 2020s has a life expectancy of about 45 years, presuming standard of care therapies and healthcare compliance from a young age. There's a lot that goes into that presumption. When I was in medical school I had the opportunity to work with a pediatric pulmonologist who had spent decades running a CF clinic and had a lot of insight into the toll CF takes on families. I learned that (in the US) many families of CF patients can't afford all the expenses needed for CF therapy, but paradoxically they make too much money to qualify for Medicaid that covers these expenses, so often they drop their household incomes to be able to qualify, which comes with many other sacrifices. I learned about the money it costs even to feed one or more children with CF because of their high caloric needs and difficulty in maintaining their weight. I learned about how nuclear families of CF patients often disintegrate in the wake of the disease, and I saw that firsthand. One of my most memorable patients in medical school in the 2010s was a 6-year-old with CF who was being raised by extended family because neither parent was around. Unfortunately, their extended family were not adequate caretakers. They would frequently miss clinic appointments, miss medication refills, most likely miss home therapies, and when they did bring the child into clinic for a routine visit and report the child was doing well, the child would be in such bad shape that they would require ICU hospitalization for weeks. I remember the meticulous documentation I would make in my notes that would later be cosigned by the attending physician because the child was under child protective services investigation and I fervently wished these notes might help protective services whisk the child away into a home that would provide them better care, but alas, that never happened. This child died of CF at age 7, akin the life expectancy of CF in the 1950s, when the CF-causing gene hadn't even been discovered and there were no adequate therapies for the disease.
Smith's (likely heavily-edited) memoirs are a tragic story. Despite a very supportive family the best medical care (furnished by parents with much more financial resources than most, and high-up connections that helped secured her lung transplantation paid for by insurance and an eleventh hour attempted experimental therapy), she had a very aggressive disease course and died at 25 due to complications of a multidrug resistant infection shortly following lung transplantation. It's clear that Smith knew of her own mortality and saw the reality as many of her friends with CF passed away, and I feel sad that her parents continued to delude her about how sick she was at the end. But for a CF patient, she lived an incredibly charmed life that's not attainable by most. I think she knew that she was very lucky but didn't quite grasp the full perspective.
June 14, 2019
This book really had quite the pull over me. I can echo other reviewers that it truly takes you on an emotional rollercoaster. Mallory's perspective on life, given her health limitations, is truly inspirational. I knew nothing about Cystic Fibrosis before reading this book aside from the fact that it is life threatening, so it was very educational to learn about the disease and its horrific effects on a person's everyday life.
This book is an amazing reminder that life is too short. Material things don't matter as much as experiences. We constantly take things for granted that we have and don't realize (i.e. breathing, being able to get up and do whatever you want, having control over your life... just to name a few). And also, most importantly, to be happy. I found myself reflecting on my life and what I take for granted that Mallory desired so much -- even the mundane day-to-day. She just wanted to be like everyone else, and she couldn't, which was heartbreaking.
While reading the book, I felt like I was one of Mallory's friends. That she was with me the entire time. She is so inspiring and I understand why she was/is so influential for so many people. When I finished the book, I think my entire face was covered in tears. I cried for Mallory, I cried for her family, friends, her story, and all the other people suffering from CF. I am so glad she told her story and am so happy that her mother published her memoirs. Grab a box of tissues and read this book -- it will change your perspective too.
This book is an amazing reminder that life is too short. Material things don't matter as much as experiences. We constantly take things for granted that we have and don't realize (i.e. breathing, being able to get up and do whatever you want, having control over your life... just to name a few). And also, most importantly, to be happy. I found myself reflecting on my life and what I take for granted that Mallory desired so much -- even the mundane day-to-day. She just wanted to be like everyone else, and she couldn't, which was heartbreaking.
While reading the book, I felt like I was one of Mallory's friends. That she was with me the entire time. She is so inspiring and I understand why she was/is so influential for so many people. When I finished the book, I think my entire face was covered in tears. I cried for Mallory, I cried for her family, friends, her story, and all the other people suffering from CF. I am so glad she told her story and am so happy that her mother published her memoirs. Grab a box of tissues and read this book -- it will change your perspective too.
January 18, 2019
The “unfinished” life of Mallory Smith is told here through her journals and the thoughts and experiences of those who shared her journey. Mallory has Cystic Fibrosis, a cruel and life-consuming lung disease with a grim prognosis, but this fierce young woman refuses to be about her illness. In her writings, she thoughtfully considers her condition and its consequences as she embraces life, athleticism, scholarship, youth, and all those around her. Ultimately she battles for and endures a lung transplant, her only hope. Recommended, and available in March from Random House / Spiegel & Grau.
February 8, 2022
Having followed Mallory when I joined the Cystic Fibrosis Foundation, I was impressed by her academic accomplishments and assumed she had a milder form of the disease. Having followed her story as it evolved, through transplant, phage therapy, and death, I found myself reading her memoir, hoping she’d still pull through, despite knowing how the story ends. I was humbled by her Herculean resilience and the humanity she expressed through her memoir; heartbroken for her mom, dad, family and friends, yet envious they got to know her.
March 6, 2023
First, I was crying as I finished reading Mallory’s story. A month or so ago I visited my friend Julie in Palo Alto. One night we went to a speech about this book and Mallory’s life. Julie’s dad was on the panel. The panel included different people that were involved with her life: parents, friends, teachers and doctors. They discussed so many different things that Mallory writes about. Her resilience is unbelievable. Her ability to reflect and look at situations without intense judgement or ridicule is amazing. Just acceptance and empathy for everybody around her. Julie used the word aprovechar in a conversation we had, I interpreted it as seizing spaces, and taking advantage of what was provided to you. I feel like Mallory showed that in her resilience and desire to live life. Wow! Wow.
August 1, 2021
A candid and poignant account of a woman's journey with cystic fibrosis.
March 27, 2019
A beautiful book about a courageous girl who fought CF with every ounce of her being. Thank you for allowing this CF provider a rare glimpse into the tumultuous road you patients live every day and how I can make a small subtle difference in this fight. You’re the reason I do what I do. Breathe easy now, Love and peace to Mal and her family. “65 roses”
May 16, 2019
Right in the middle of my move across the country, I was contacted by a friend of Mallory Smith, asking me to read Mallory's memoir for review. I downloaded the Kindle and audiobook version and promptly, in keeping with this entire move, lost the friend's email for a time. I very much wanted to read Mallory's story because I too had a friend who had cystic fibrosis, like Mallory.
Cystic Fibrosis, which is a progressive genetic disease, is cruel in that it worsens as a person enters what should be the prime of their lives. It is a disease that is a great challenge to live with and that is in part what made Mallory, who loved sports and the beaches, so unusual. For so many years, until the cusp of adulthood and her admission to Stanford, Mallory was undaunted by her CF. She wanted to simply live a happy life. Her observations of living with her illness can in some ways be generalized to the day to day struggles of anyone living with a serious, life-threatening disease. From understanding what it's like to be a young person who is continually having to readjust their expectations from life, to advice about what not to say to someone who is seriously ill, Salt in My Soul offers readers a chance to walk in Mallory's shoes. My understanding from Mallory's friend is that all proceeds from this book will be donated to CF research.
This is a poignant story about battling Cystic Fibrosis and closes with some promising developments in treatment for one of the serious types of bacterial infections (Burkholderia cepacia) that can cause rapid clinical deterioration due to antibiotic resistance.
Cystic Fibrosis, which is a progressive genetic disease, is cruel in that it worsens as a person enters what should be the prime of their lives. It is a disease that is a great challenge to live with and that is in part what made Mallory, who loved sports and the beaches, so unusual. For so many years, until the cusp of adulthood and her admission to Stanford, Mallory was undaunted by her CF. She wanted to simply live a happy life. Her observations of living with her illness can in some ways be generalized to the day to day struggles of anyone living with a serious, life-threatening disease. From understanding what it's like to be a young person who is continually having to readjust their expectations from life, to advice about what not to say to someone who is seriously ill, Salt in My Soul offers readers a chance to walk in Mallory's shoes. My understanding from Mallory's friend is that all proceeds from this book will be donated to CF research.
This is a poignant story about battling Cystic Fibrosis and closes with some promising developments in treatment for one of the serious types of bacterial infections (Burkholderia cepacia) that can cause rapid clinical deterioration due to antibiotic resistance.
March 20, 2019
A very touching book that’s a lovely tribute to someone who was clearly very loved. It’s interesting reading this when my first exposure to CF was through Claire Wineland’s work. While I know that Claire wasn’t the spokesperson for every person with CF, I was still surprised to see how drastically different her views and Mallory’s were on some things. Sometimes they were in sync, and sometimes they weren’t, which is indicative of real life and real people. Nonetheless, both girls bring such vivacity to their experiences, even as different as they are.
My biggest thing with this book is how heavily edited it seems to be. I understand that there was a good deal of editing done in order to protect friends and loved ones, but there are times when it comes across as edited moreso than anything natural. The perspectives of Mallory’s family and boyfriend toward the end of the book are also unclear because they’re written in a way that implies they’re part of their own respective individual journals, and it’s not until the very end when we see that their perspectives were added in later specifically for this book. So.
Most importantly, I don’t think my opinion means much, nor should it, as this book is a testament to a young woman who was so, so deeply loved. I hope that the people who loved her in life, love her in death, and will continue to love her for the rest of their lives find everything they need in this book.
My biggest thing with this book is how heavily edited it seems to be. I understand that there was a good deal of editing done in order to protect friends and loved ones, but there are times when it comes across as edited moreso than anything natural. The perspectives of Mallory’s family and boyfriend toward the end of the book are also unclear because they’re written in a way that implies they’re part of their own respective individual journals, and it’s not until the very end when we see that their perspectives were added in later specifically for this book. So.
Most importantly, I don’t think my opinion means much, nor should it, as this book is a testament to a young woman who was so, so deeply loved. I hope that the people who loved her in life, love her in death, and will continue to love her for the rest of their lives find everything they need in this book.
Read
May 17, 2019One of my favorite professors in graduate school studied the CFTR chloride channel, which is faulty in the disease cystic fibrosis (CF). Since then I've been on the lookout for books that mix the science behind cystic fibrosis with personal experience. Salt in My Soul: An Unfinished Life by Mallory Smith fits easily into that category. The book, published posthumously by the author's mother, Diane Shader Smith, is based on more than '2,500 pages of [Mallory's] reflections over ten years.' It's breadth isn't daunting, in part because it begins with an introduction that describes cystic fibrosis in easily digestible terms and then moves directly into a narrative told in a 15-year-old's voice. The diary entries are peppered with footnotes provided by Shader Smith, which explain some of the more technical aspects of CF and the treatments that Mallory experienced. As Smith ages her writing style matures and deepens, and from a writer's perspective I found the evolution of the writing fascinating. Despite her young age—Smith was only 24 when she passed away—she doesn't hold back her raw truth, and as a reader I appreciated her honesty. At the end of the book Smith writes, "I want to create a piece so moving that people are in disbelief. And I want it to be like handing people a pair of glasses, giving them a way of seeing something they didn't even realize they weren't seeing." In my opinion, Smith succeeded.
March 24, 2019
“I want to create a piece so moving that people are in disbelief. And I want it to be like handing people a pair of glasses, giving them a way of seeing something they didn’t even realize they weren’t seeing.”
-Mallory Smith
As someone who spent months of their life in Stony Brook Hospital pre- and post-kidney transplant, this book really affected me.
This is easily the most personal, and influential book I’ve ever read in my entire life.
I found myself reliving all the little losses and victories of day-to-day hospital life. I found myself sharing in Mallory’s disgust at health insurance company profit over patient care. The need for more organ donors. The need to accept that when you live with a chronic illness every day is automatically subject to change and you can have a good day and not be “productive” by society’s standards. How sometimes it’s seemingly impossible to love someone else when you struggle loving yourself due to your chronic disease. But then you do love someone who reminds you of your incredible worth.
When starting this book, I already knew the tragic outcome. I didn’t expect to feel like I lost a friend by the time I reached those final chapters. But this friend re-opened my eyes to what’s most important in life and for that I’ll eternally be grateful.
Register as an organ donor: organdonor.gov
-Mallory Smith
As someone who spent months of their life in Stony Brook Hospital pre- and post-kidney transplant, this book really affected me.
This is easily the most personal, and influential book I’ve ever read in my entire life.
I found myself reliving all the little losses and victories of day-to-day hospital life. I found myself sharing in Mallory’s disgust at health insurance company profit over patient care. The need for more organ donors. The need to accept that when you live with a chronic illness every day is automatically subject to change and you can have a good day and not be “productive” by society’s standards. How sometimes it’s seemingly impossible to love someone else when you struggle loving yourself due to your chronic disease. But then you do love someone who reminds you of your incredible worth.
When starting this book, I already knew the tragic outcome. I didn’t expect to feel like I lost a friend by the time I reached those final chapters. But this friend re-opened my eyes to what’s most important in life and for that I’ll eternally be grateful.
Register as an organ donor: organdonor.gov
February 11, 2019
I'm a little on the fence about this memoir. The story is compelling, but the writing was not. I understand that the writing is coming from a young woman between the ages of 15-25 when she passed, but I think this could have benefited greatly from more editing.
Thank you to Random House Publishing Group - Random House and NetGalley for the opportunity to read this book in exchange for my honest review.
Thank you to Random House Publishing Group - Random House and NetGalley for the opportunity to read this book in exchange for my honest review.
August 13, 2019
This book is awesome. Mallory Smith went through so much and with so little time. She had an excellent writing style, and the book was rarely boring. I think that everyone can gain something from reading this book. Her mindset of wanting to make a change is apparent from both the book and her accomplishments in environmental journalism. I would recommend this book to everyone.
October 11, 2019
Salt in My Soul was a beautiful and stark reminder of how you never really know what other people are going through. Throughout her experience with chronic disease and being forced to consider death so early in life, Mallory wrote countless words of wisdom from which everyone can benefit.
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