When it comes to ‘disease lit,’ I’m all in. How could I not be, as someone who has now been a cystic fibrosis dad for two decades?
At first I resisted. Not long after my daughter was diagnosed at five months of age, a well-meaning neighbor dropped by and gave me a copy of a little pink book she said was the story of a child who had died of CF. I thanked her politely while thinking: Well, that’s the last thing I want to read right now.
Later I glanced at the cover of the book and noticed the name of the author: Frank Deford. The Frank Deford, famous sports writer and NPR Morning Edition sports commentator? Yup.
As a longtime Frank Deford fan, I promptly devoured his Alex: The Life of a Child. Read it the next time you need a good cry. For my part, the experience launched me onto two trajectories.
First, Deford became my role model as I figured out how to be the dad of a daughter with CF. For example, to this day I rely on his “four basic things you must understand about hospitals,” institutions with which every CF family does a lot of business.
Second, I became an aficionado of books about cystic fibrosis, especially the stories of patients and their families. And I’m not just talking about the printed word; I watch the movies too.
So of course I have read Salt in My Soul and now I have just seen the newly released documentary version, both based on the diary of Mallory Smith. She died of CF in 2017 at the tender age of 25.
How determined I was to dislike this documentary. I knew from the book that Mallory came from a place of privilege. Her parents are educated, successful, and empowered. Mallory graduated from Stanford University. Hawaiian vacations figure prominently. Judging by the amount of inpatient and outpatient care Mallory received from very dedicated caregivers, she had excellent health insurance.
There’s nothing wrong with any of that. Substitute Bowdoin College for Stanford University and Mallory’s story reads a lot like my daughter’s. It’s just that I did not think the world needed another heartwarming account of what happens when wealth and power go up against cystic fibrosis.
Plus, when watching the documentary version of Salt in My Soul it becomes instantly apparent that the Smith family spent a lot of time and resources videotaping Mallory as she lived, thrived with, managed to find love in spite of, and ultimately died of CF. It was almost as if they were planning to make the movie all along. Mallory’s mother, Diane Shader Smith, has a background as a Hollywood publicist.
But, gosh. Over the 90 minutes of the documentary, I came to love the Smith Family. Why? They have courage.
The first courageous thing is a disclosure they make very early in the film; it goes by so fast that I’ll wager most people don’t even remember it. Mallory was three years old when she was diagnosed with CF. She was tested immediately after her parents learned via amniocentesis that their next child would be born with CF, whereupon they opted to terminate the pregnancy.
Ordinarily, that’s a ‘third rail’ topic in CF Nation. As someone who has written publicly of how CF parenthood has reinforced my commitment to reproductive freedom, and as someone who narrowly avoided confronting the same situation they confronted, I salute Gold Star CF Parents Mark and Diane Shader Smith for the choice they made. But even if you disagree with their choice, you have to admire them for disclosing it publicly and without any effort to defend it (or apologize for it). That deeply intimate fact about their family is now out there for the rest of us to scrutinize. That takes courage, folks. It just does.
Courage suffuses the rest of this account of Mallory’s life as well. The arc of her universe began to bend toward mortality when she learned as a preteen that her lungs had been colonized by the CF super-bug Burkholderia cepacia. To me, that’s such a terrifying prospect that I honestly don’t think I could ever speak of such a thing in my family to anyone outside of my family.
But, again, the Smiths handle that question otherwise. They even allow the documentary to suggest the possibility that Mallory picked up her B. cepacia at a summer camp. That would torment me to no end if I were Mallory’s dad and had allowed her to go to camp.
Speaking of Mallory’s dad, Mark Smith is my favorite character in the documentary. You can just tell he lives by Frank Deford’s “four basic things,” the most important of which is: “No matter what anybody in a hospital tells you . . . ask why, and if that doesn’t obtain satisfaction, ask why again.”
Mark does exactly that. Again and again. Mallory is in dire need of a lung transplant, but is deemed ineligible because of her B. cepacia? Mark hunts up doctors who will do the operation nevertheless, and the family moves across the country to Pittsburgh. More poignantly, with Mallory near death just after her 25th birthday, Mark scours the globe for experimental treatments and, almost incredibly, he finds one that just might work.
Specifically, he tracks down a source of a cutting-edge phage therapy and has the drug flown to Pittsburgh as B. cepacia is finally poised to claim his daughter’s life. The drug is administered but, achingly, the help is too late and Mallory dies.
Bacteriophages are specialized viruses that kill specific bacterial strains; five years after Mallory Smith’s death, their use is still cutting edge stuff. Just last month, the CF Foundation awarded up to $5 million to a firm called BiomX to conduct clinical trials of a phage that targets Pseudomonas aerugenosa, the most ubiquitous bacterium that loves CF-afflicted lungs.
Would I have done what Mark Smith did, in similar circumstances? Damn, I hope so. I really hope so. May I never have to find out.
Salt in My Soul leaves almost nothing to the imagination. There’s phlegm. There’s blood. Mallory, once a three sport varsity athlete in high school, grows so visibly frail as the documentary progresses. Her sweet and handsome boyfriend Jack Goodwin stays close, but she has to keep her IV pole even closer. A final glimpse shows her on a respirator as dozens of family and friends converge on Pittsburgh to say goodbye.
Compare that, for example, to Five Feet Apart, the feature film released in 2019 in which two teenagers with CF, one colonized with B. cepacia, fall in love while neighbors in an inpatient unit. I cried when I saw it (though not during the scenes that tend to make teenagers teary), and I appreciate what it did to spread the word about cystic fibrosis. But such a gauzy and romanticized account of life with this disease crumbles to the point of irrelevance when compared to the urgent and unvarnished realism of director Will Battersby’s documentary depicting real life and the facts of end-stage CF.
Confession: The book version of Salt in My Soul didn’t really do it for me. Maybe I already knew too much about CF for Mallory’s first-person account to be revelatory. I don’t know. But I was blown away by what Battersby did with the published version of Mallory’s diary.
Specifically, the documentary ends with each person interviewed for the film – parents, a brother, the boyfriend, physicians, a coach, college professors, neighbors, friends – reading excerpts from the book aloud. What a fabulous and effective cinematic choice.
The New York Times reviewed the film – thanks, mom – and called it “extremely painful to watch.” Wrong! Painful is the $326,000 a year list price of the breakthrough CF drug Trikafta, or the thought of how many stories of lives claimed by CF go untold. Meanwhile, this account of courage in the face of CF is a pleasure.