I remember when I first read about the genetic disease, cystic fibrosis (CF). It was December 1985, and my parents had a subscription to Reader’s Digest. That month, the condensed book excerpt was Frank Deford’s heartbreaking memoir, Alex: The Life of a Child. Deford had written this achingly beautiful account of his daughter, Alexandra, who died from CF when she was just eight years old. Alex was almost a year older than me, so her story was particularly poignant as I read about her as a 13 year old. Later, I bought Deford’s book and read it more than once.
Ever since I first learned about CF through Alex’s story, I’ve been interested in reading more about people who have lived with and died from it. Cystic fibrosis is a disease that affects everything about living. Though there have been some significant medical science breakthroughs that have made it possible for many CF patients to live much longer than Alex did, the sad truth is, it’s a disease that still claims so many young, promising, amazing people long before they should die.
Mallory Smith was, like so many CF patients seem to be, an extraordinary young woman. She died on November 15, 2017 at age 25, having accomplished incredible things during her short life. Her passing came about two months after she received a double lung transplant at the University of Pittsburgh Medical Center (UPMC). When she was still living, Mallory was a prolific writer. She kept a diary while she was struggling with cystic fibrosis.
After her death, Mallory’s mother, Diane Shader Smith, edited and published her diary, which she started when she was 15 years old and continued until her death at age 25. The book is called Salt in My Soul: An Unfinished Life. The title refers to a universal condition of babies born with CF, salty skin. It’s such a well known phenomenon, there’s even folklore about it:
“Woe to the child who tastes salty from a kiss on the brow, for he is cursed and soon will die.”
Salty skin is a hallmark of babies born with cystic fibrosis, a disease primarily of the lungs that is passed down via genes from both parents. Mallory was also a native of California and grew up near the Pacific Ocean. She was a swimmer, among so many other things. As I read about her medical travails, I couldn’t help but be amazed by all she managed to do with her life, in spite of her inevitably fatal illness. And, based on what I read in Salt in My Soul, she managed to do most of it with a positive, uplifting attitude, that won the respect of thousands of people who were lucky enough to know her personally.
Mallory was diagnosed with CF in 1995, at the age of three. She grew up having to endure frequent hospitalizations, taking endless medications (about 60 pills every day), having daily therapy sessions to loosen and expectorate the thick mucus caused by CF, and becoming all too familiar with hospitals in Los Angeles and San Francisco. Like most young people, Mallory had dreams of traveling the world and doing great things in her life. So, even though she was very sick at times, Mallory did all she could. She somehow managed to get excellent grades, participated and captained three sports teams, and got elected prom queen. She was clearly very likable and inspirational and based on her book, had so many friends and loved ones who adored her.
When she was choosing colleges, Mallory applied to Stanford University, not just because of its stellar academics and excellent reputation, but also because it had a hospital with CF experts on staff. Mallory’s college career was punctuated with hospital stays and doctor’s appointments, yet she was determined to live as normally as possible. She had roommates, and they became accustomed to everything she needed to accommodate her disease. Mallory eventually graduated Phi Beta Kappa from Stanford with a 4.3 GPA and a major in human biology with a concentration in environmental anthropology. After graduation, she became a freelance writer and lived in Los Angeles for awhile, until her health required her to move back to San Francisco, to be closer to her Stanford doctors.
When Mallory was a teenager, her lungs became infected with bacteria, including a deadly form of Burkholderia cepacia that became a superbug highly resistant to antibiotics. CF is bad enough when the bacteria involved are not superbugs; however, Burkholderia cepacia colonization made it much more difficult for Mallory to qualify for the double lung transplant she desperately needed to survive. Salt in My Soul covers the story of Mallory’s fight for a transplant, which doctors were reluctant to do. The superbug infection makes it much less likely that the transplant will be successful, as the bacteria can still colonize in the patient’s lungs and kill them quickly. Ultimately, that is what happened in Mallory’s case.
Even as she was dying, Mallory’s family and friends were trying to find a new treatment for her. Her parents reached out to an epidemiologist whose husband had “phages” treatment, a new and experimental protocol that has shown some promise in helping people vanquish superbug infections. They were just about to try it with Mallory when her health went past the point of no return.
The phages treatment was one that Mallory never had the chance to try, but she did help research at least one drug. Mallory was being treated with a medication called Ataluren, which had seemed to be helping her. However, she experienced multiple episodes of hemoptysis (coughing up blood), and was taken out of the study. The drug was later discontinued.
This book covers the incredibly challenging financial issues faced by families who battle CF. I got the sense that Mallory’s parents were fairly well off financially, and they did have insurance. However, like all insurance companies, Blue Cross didn’t want to pay for certain necessary services. When it came time for her transplant, it was offered at a hospital that was not in Blue Cross’s network, and officials there refused to approve her for coverage. It took a minor miracle to straighten out that mess, and I was left sitting there, shaking my head in amazement. If I hadn’t married Bill, I might have wound up working for a health insurance company, as one of my graduate degrees is in public health- health administration. Health insurance is kind of in my wheelhouse… but reading about the dirty dealings Mallory’s family had to endure with their health insurer made me glad that’s not my life’s work. Health insurance companies in the United States literally gamble with people’s lives.
Mallory’s story also includes insight as to what it was like for her to have a love life while suffering from CF. Mallory had a very devoted boyfriend named Jack who was always there for her, just as her parents were. Jack includes some entries in the book, writing about how he knew his love affair with Mallory would end in tragedy.
I just finished reading Salt in My Soul this morning. While I don’t think it affected me in quite the profound way Frank Deford’s book, Alex: The Life of a Child did, I did find Mallory Smith’s story very moving and, at times, infuriating. A few days ago, without naming the book, I wrote about how Mallory was mistaken for a coke fiend because of her illness. She almost got arrested, simply because a bathroom attendant thought she’d been doing lines of cocaine in a public restroom. No… she had been suffering from one of the many symptoms of her fatal disease. It was just one more indignity and inconvenience she had to endure, thanks to being born with a genetic anomaly.
In another passage, Mallory’s mother wrote about how, even though she had a handicapped placard on her car, a tow truck driver in Pittsburgh tried to extort $200 in cash from her. It took the kindness of strangers to prevent him from taking the car and potentially putting Mallory’s life at risk, due to the fact that her necessary medical equipment was in it.
I felt a little guilty about my own persistent bad attitude about life. All Mallory wanted to do was live her life and achieve her dreams. So many of us are born with healthy bodies, and yet we fail to live up to our own potential. And so often, when I read about someone with CF, I read about an extraordinary person who does all they can just to live. I can think of so many people with CF who have achieved the incredible, even though they suffer(ed) from such a devastating disease that robbed them of so much– independence, dignity, normalcy, even the most basic of freedoms. And at the end of her life, after Mallory had had several “dry runs”, waiting for new lungs, she suffered so much that she had brief wishes for death. I almost wonder if it would have been better, and she might have lived longer, if she hadn’t had the surgery. But I know from reading Salt in My Soul, Mallory desperately wanted to try everything.
I guess if I can take anything from reading this book, it’s that you really can do things that seem impossible, if you put your mind to it and set your heart on success. Good health is a priceless gift that more people should appreciate and embrace. So many extraordinary people would love to simply be healthy. For that lesson alone, I think more people should read Mallory’s story. I give it five stars out of five. There’s a link to the book on Amazon at the bottom of this page.
Salt in My Soul has also been made into a documentary, and it can be watched on many of the most popular streaming platforms, including Google Play, Vimeo, and Apple TV, as well as Comcast, Cox, and Spectrum on demand. Below is the trailer for the film.
Edited to add, August 23, 2023: I watched the documentary yesterday. It was well worth viewing. Mallory was such a beautiful, remarkable soul. No wonder so many people adored her for her all too brief life. I highly recommend the documentary! I downloaded it from Apple Plus.
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