This was a touching read, filled with honesty and sincerity. I appreciated the voice, as much as the insight into Smith's experience with illness.

A beautiful collection of diary entries by a young woman with cystic fibrosis who died to young. She had an incurable disease but was still determined to live a happy life despite it. This is a wonderful inspiring memoir. I highly recommend it.

I would like to thank Netgalley and the publisher for providing me with a copy free of charge. This is my honest and unbiased opinion of it.

This is Mallory Smith"s life journey, a life cut short by Cystic Fibrosis. Just looking at Mallory, you could not tell that she suffered from a serious genetic disease. Although her body appeared normal from the outside, it was constantly in turmoil on the inside, due to a mutation to one specific gene, the CFTR gene. Her family, from the outset and until the end of her life, supported her in any way that they could. In grade school, the school year began with the class reading "Mallory's 65 Roses", a book created by Mallory to explain her condition to her friends. Every year, at Thanksgiving they held an annual fundraiser, that over the years raised millions for research. Mallory was always surrounded by many friends. She loved books and sports. In her teens, she discovered that the sea, and the salty air in the marine environment, had a healing effect on her body, and she fell in love with Hawaii, and the sport of surfing. She was always aware of the fact that because she carried a specific bacteria in her lungs, she would never be a likely candidate for a double lung transplant, so it was never really on her own personal radar. During university, which she did attend at Stanford, her health was beginning to decline. She attended Stanford, which is a large Transplant Centre, and her home hospital was UCLA, but neither considered her for the lifesaving double lung transplant. When she was finally at the end stages of lung disease, The University of Pittsburgh Medical Center took on Mallory"s case. She did undergo a double lung transplant, but the bacteria that colonized her lungs attacked the new lungs. Last ditch effort to save her with experimental phage therapy was unsuccessful Mallory kept a detailed record of her life in journals, and hoped to be able to share them in a book. Ultimately, it was her mom, who put everything together into this inspiring memoir. I am so thankful to #netgalley for allowing me to read all about Mallory Smith in #saltinmysoul. Her life should be a message to all to live to your fullest everyday! 5 stars.

Thank you, Random House and NetGalley for a digital ARC.

I always feel privileged to read the memoirs of those who have passed away. I cannot begin to imagine what it must be like to try and process the emotions surrounding a chronic disease and terminal prognosis. What must one think when their death is imminent? By all accounts Mallory was an extraordinary individual and so deeply loved by many. This was an incredible glimpse into her life and that of many cystic fibrosis patients. Her story will stay in my thoughts and heart for a long time.

“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

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.
Thank You Spiegel and Grau/Random House for sending me this book through NetGalley.

This memoir was wonderfully written! I don't often read non fiction but I'm so glad that I had the chance to read this one. It's just amazing to read about all the things that are possible to accomplish in such a short lifetime.

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.

Oh, my heart. This was a really heavy one for me to read since I also have Cystic Fibrosis. It’s beautiful and heartbreaking, Mallory Smith’s family honored her in such an extraordinary way by having her story published. I highly recommend this one, but please be aware of your own emotional health while reading if you also have CF or another chronic illness.

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.

Mallory Smith was born with the rare genetic disorder cystic fibrosis, which causes mucus to build up in the lungs, around the pancreas, and on the spine among other places. Living with cystic fibrosis means co-existing with an endless routine of medications, treatments, and hospitalizations. Life expectancy is rising but CF is still a terminal disease and even now half of patients don't make it into their 40s. Mallory's case is complicated by her being one of the 3% infected with the dreaded b. cepacia strain of bacteria, which can make it impossible to get a life saving lung transplant.

This book isn't what I expected, which is in part why I've given it 4.5 stars. I was expecting a polished memoir and instead this book is a diary more or less in its rough form. Mallory kept the journal between the ages of 15 and 25. When she got too sick to continue writing, friends and family fill in the gaps. If the inner musings of a teenager and young woman is not your cup of tea, I would advice caution in picking up this book. But I found her writing honest and raw and touching. I was completely won over. There were times I would get confused about who was who, the cast of characters not introduced like they would be in a more streamlined, edited narrative. However, the overall effect of the diary form worked and I came to feel like I *knew* Mallory. I traveled the ups and downs with her, and I felt the acute loss when her double lung transplant failed.

I appreciate when a book brings me a new perspective, and I feel like this memoir has introduced me to cystic fibrosis and what people endure when living with a chronic disease. One night, Mallory went with friends to a nightclub. She started coughing up blood in the ladies' room, enough to catch the attention of a manager, who accused her of doing cocaine. They didn't believe she was sick because she looked like every other young, healthy woman on the dance floor. It demonstrates the paradox people living with a chronic condition like CF deal with-- looking healthy but being sick and not being able to get people to understand how the two can co-exist. It's a good reminder that you can't tell who is "worthy" of a handicap tag just by looking at them.

It's sad that this will be Mallory Smith's last book. But she managed to "live happy" and not limit herself beyond what CF demanded from her. She packed a lot of life into 25 years-- and a lot of wisdom, humor, and insight into this book.

This is an 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.

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.

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.

I'm a little in 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.

Heart breaking story of Mallory as he battles cystic fibrosis. A great read and introduction to the disease.

While Mallory Smith’s story is compellibg, the writing and format are not. It feels crappy to say that I wouldn’t recommend a book about a young woman who suffered so much and was courageous enough to share her story. However, I honestly thought the narrative was not the greatest. The book is her diary from age 15 to her death and edited. But, because her words are just in diary form and not revised and honed, and the entries chosen and edited, it is not the most readable form for her story.

Wonderful book. Deep, sad, introspective, I feel inspired reading these words.

Granted, some of them were hard to read, but this book is a must read for anyone who is wondering about life and where they fit into it.

This book was quite interesting and am trying to decide if it would be appropriate and needed for my library. Was glad to be able to review and read it.

An honest raw heart wrenching story of Mallory Smith’s life cut short by Cystic Fibrosis.Mallory shares her brief life that she lived to the fullest a lovely spunky young girl.A girl youbwish had never been afflicted with this disease.An inspirational life,book,Highly recommend,#netgalley #saltinmysoul#randomhouse.