Salt in My Soul, the documentary version, is something special. If you’ve followed the blog for a long time, you know I loved the book. In fact, Darcy and I had a passage from Salt in My Soul read aloud at our wedding:
My life is a miracle. Life in general is a miracle. Our existence is the result of stars exploding, solar systems forming, our Earth having an environment hospitable to life, and then, finally, millions of highly improbable events accumulating over millions of years to bring us, a capable and conscious bag of stardust, to the here and now.
Mallory’s eloquence with her words is something that I aspire to with my own writing, but it’s just such a gift to have access to them and hear them in the new film that brings her journal to life.
No, the documentary is not a biology lesson nor is it a cystic fibrosis 101, which is perhaps what makes it so good. Instead, it is the story of a girl becoming a woman. It’s also a story about how far parents will go to save their child when uncertainty, horror and terror strikes. I think CF moms, especially, will see this film and know the emotions that Mallory’s mother, Diane, felt through every tough conversation with the doctor and the peril felt with every bad test result.
Yes, people with CF will recognize the arguments over treatments, the rebelliousness of what happens when CF kids go off to college, and the cough. Yes, the CF cough is loudly pronounced throughout the entire film.
The first time I heard the CF cough, it was like someone had opened a window to my own past because at the core of Salt in My Soul, the film captures the last era of cystic fibrosis. It offers a peak into a time when so many people made it so close to where we are now but didn’t get to walk into the future with us, and that’s why it is so powerful.
Mallory details the chaos that happens around her to a point where it’s almost like she was able to slow time down, though, I imagine her dip into end-stage illness must have actually felt like it was happening so fast when she lived through it. Those hard-to-watch scenes at her end are heart wrenching, but they show the real life that we all know with cystic fibrosis. They show the cold operating rooms, the cheap warm blankets the nurses use to bundle us, the wall full of beeping machines that make rest impossible, and the Darth Vader-like breathing that echoes around our hospital room. It will be a hard watch for anyone with CF, but a fulfilling one because it keeps our collective past alive, and it keeps Mallory alive, too.
In sum, the documentary which hits streaming services next week is a story about a girl, but not just any girl. It’s about a wonderful young woman, and what a superbug took from her. Her legacy shines through brightly, and it’s one that hopefully makes a difference for the millions that confront superbugs every year.