It’s an interesting feeling to pick up a book when you know how it ends.

When I agreed to write a review of Salt in My Soul: An Unfinished Life by Mallory Smith I wasn’t thinking about that part. So, when the book arrived and there on the cover was a picture of a very alive-looking person doing a headstand, I was hit with a gut-punch realizing I’d promised to write a review about a book by a person who was already dead.

Mallory Smith dies at the end of her book. Mallory Smith is dead.

Now that you know how it ends, too, read it you must! Because it’s 303 pages full of a quarter century of life that was not wasted.

Here’s a deeper reason: it’s achingly human. Salt in My Soul is a raw, unfiltered coming of age story with all the things you’d expect of a child growing up in the ’90s and 2000s through the lens of being sick, incurable, and ultimately terminal. This book inserts humanness and normalcy into sickness, with an inside glimpse into the inner-workings of the mind of a girl growing up, living, and dying with cystic fibrosis.

Cystic fibrosis, from the Cystic Fibrosis Foundation, is “a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.”

I do not have cystic fibrosis, but I do live with an incurable, progressive disease. I knew I would find Mallory’s story relatable, so I jumped at the chance to read a first-person narrative of life with a disease I’m still learning about. Plus, I love memoirs.

While Salt in My Soul summarizes a life with good periods of health punctuated by unpredictable emergencies and long hospital stays that get longer and closer together as Mallory tacks years on – her doctors becoming like family – the thing that resonates most is this: people living with incurable progressive diseases tend to show a superhero-strong shell, yet live complex and difficult lives on the inside. And Mallory gives us a brave glimpse of the inside.

As a star volleyball player, swimmer, surfer, and even prom queen, Mallory’s life glows with popularity and charm on the surface. Yet she writes of an uncertain and often nonexistent future. She’s going to die, she just doesn’t know when. She explores heart-wrenching decisions she faces when her health nosedives suddenly and unpredictably (and often), like when she agrees to aggressively treat a trio of complex medical exacerbations with the knowledge that she will have to give up club volleyball and masters swimming for many months while she is on constant IV treatments. She writes,

“People keep telling me I’ll adjust. They just don’t understand what it’s like to have your life ripped away from you because they don’t realize the things I have to give up when I’m on IVs.”

Mallory also writes of celebration, hope, and joy, like when she graduates from Stanford or writes her first book. Her memoir is a captivating story complete with first crushes and loves, school and family stress, but with all the complex layers of being a professional patient injected in between. The book reads from the perspective of a family that has spent the better part of their lives in the medical world, so this book may require the less-medically-aware to look up some unfamiliar terms that aren’t defined in the text, but the writing is approachable and personable, touching on familiar feelings sick and healthy people alike experience.

Figuring out the logistics of living is the chorus behind and underneath all of Mallory’s adventures, including the most banal of living functions healthy people take for granted: eating, pooping, waking up, breathing, going to prom. There are drugs and treatments to help with all these things, and Mallory describes their effect and impact in detail as she navigates the emotions that accompany them.

Speaking of prom, just wait ’til you get to the part about her starting IVs right before the limo arrives and how a tear gas prank later in the evening makes her lungs bleed.

Mallory covers a vast spectrum of emotions many people living with incurable diseases experience including, notably, the topic of, well, living. She writes:

“I fear the choices I make are going to cut my life short. Would I rather live a long life and modify my expectations for how that life will look? Or would I rather have the ‘go hard or go home’ mentality and go all out, love life, have fun, live like everyone else, not look back, and accept that what happens, happens?”

… Eighteen pages later, she’s celebrating having played volleyball all day and gone out for dinner with the team. Her stories of athletic bravado are peppered throughout the book, as are insertions of IVs, antibiotics, and hospital stays.

The decision of whether to live fully (and possibly shorter) or safely (and probably longer) is a topic most healthy people do not consider on a daily, weekly, or monthly basis. It’s just one of the many complex debates we with incurable diseases have with ourselves, usually privately. Mallory’s skill in putting into words what she and millions of people feel takes skill.

The true inspirational aspect of Mallory’s story is not that she continues to fight against a terminal diagnosis (she didn’t have much choice in that ‘decision’ to ‘fight’); but rather, her ability to maintain feelings and emotions through it all without becoming numb – keeping her innermost thoughts written down with the intention of sharing with the world postmortem. This is a powerful glimpse of the inner workings of someone who refused to become desensitized to a life of continued trauma at the hands of cystic fibrosis.

I do want to mention that Salt in My Soul involves a fair amount of privilege – privilege of a family (especially a mother) that could afford to physically help Mallory almost daily, raise millions of dollars annually, pay for apartments in San Francisco, move across the country, fight tirelessly for medical treatment, and maintain connections with important people who could make strategic phone calls. There’s only so much health insurance covers, and not every incurable person has the emotional, physical, and financial support of their families (especially low-income folks and people of color). I am delighted that Mallory’s family was able to be so supportive; and her mother, Diane, is a shining example of how other parents can and should follow suit (as able). Mallory touches briefly on these concepts but doesn’t name the word ‘privilege,’ and she states that she is fortunate to have family support and the ability to fight for access to treatment, arguably the reason she was able to live as long as she did with the quality of life she maintained for years. Would that anyone with an incurable disease could have the support of the Smiths!

I highlighted dozens of paragraphs in this book because Mallory speaks directly to the experience of the normalcy of living a sick life. You’ll have to read it to find what speaks to you, but I will share one last excerpt:

“Real change is often made by people who are too young, too inexperienced, or too naive to know that what they’re attempting would be considered impossible by others.”

Mallory was young, and this book and her life certainly can help change the face of incurable disease, if enough people read it. More importantly, I envision this book having the power to grant permission to others to share their stories in similar ways.

Salt in My Soul is available in hardcover, e-book, and audiobook. It will be released in paperback January 28, 2020.

Final note: I received a complementary book for the purpose of writing this review. All thoughts are my own.