A month or two ago, I finished a powerful memoir that had been on my to-be-read list before it even came out.
But it was a read I needed to sit with. As much as it shook me to my core—tears during the last several chapters included—I couldn’t just run to my computer and type up a review for the blog. Part of that was due to the nature of the subject in general, of course…but so much of it had to do with my own complicated feelings about living with a life-threatening chronic illness.
Salt in My Soul: An Unfinished Life is a memoir by Mallory Smith, a young woman that had cystic fibrosis. The memoir is a collection of diary entries by Mallory starting from the time she was 15-years-old, curated and published by her family after her death from CF at just 25.
Cystic fibrosis is a genetic disease affecting the cells that produce mucus, sweat and digestive juices. It causes the fluids to become thick, making it extremely difficult—and eventually impossible—to breathe. CF is a progressive disease, meaning it gets worse over time, and causes severe damage to the lungs, digestive system and other organs.
Those with CF spend hours per day on breathing treatments and taking medication to fight their disease. The average life expectancy of patients is 37 years, which has increased significantly in the past several years.
While I’m thankful that my college sorority’s passionate involvement with The Cystic Fibrosis Foundation taught me more than the average person knows about the disease, it was so eye-opening to read a firsthand account from a person battling it.
A big portion of the time I spent reading Salt in My Soul, I felt like my struggles with Type 1 Diabetes were nothing compared to Mallory’s. I felt, frankly, guilty for the time I’ve spent complaining about my disease. Who am I to complain when people like Mallory have it so much worse? When Mallory fought to get her organs transplanted? When she spent months at a time in the hospital?
On the other hand, I felt understood by Mallory’s depiction of life as a young person with chronic illness. We both dealt with the frustration of being invisibly ill—looking healthy and “normal” while feeling a completely different way inside. We both had moments of confusion around dating and friendships. We both had days where we did feel mostly normal…followed by days where we couldn’t imagine dealing with our diseases for another day.
Something I often discuss with my therapist is this dichotomy between feeling grateful and feeling frustrated. Grateful that I have a fairly manageable disease. That I have a strong support system of family and friends. That I’m in a position, with the help of my parents, to financially afford the best care. And, most of all, grateful that I don’t have it worse.
But, of course there are times where I reflect on how unfair it is that most people my age simply worry about their careers, relationships, and fun…while I worry about all of that plus staying alive. Plus educating people and correcting misinformation about my disease. Plus staying financially on top of my medical expenses. Plus managing the mental health of a seriously ill person.
My therapist always tries to remind me that I don’t have to feel grateful all the time. That it’s good that I recognize my blessings and make time each day to reflect on how lucky I am, but that I’m allowed to be pissed off at the unfairness of it all sometimes.
As I was reading Mallory’s memoir, I mentioned to my therapist that my feelings of guilt and the need to be grateful were even stronger as I compared my life with diabetes to the life of someone with CF.
Then I came across this passage by Mallory, and I felt so understood:
“In some ways, I struggle so much more than any twenty-four-year-old deserves to. But in some ways, I’m privileged beyond belief. I wish those two things canceled out to make me feel somewhat normal. Instead, I just feel the deepest lows of CF misery, and the incredibly fortunate highs of having the family and friends and resources to live as well as possible despite that.”
As I continued, Mallory spent a good chunk of time talking about the frustrating, pointless roadblocks of healthcare for the chronically ill in the United States. This is something that I often mention on my social media, because it is truly one of the most frustrating parts of being “sick.” Instead of just dealing with our illness itself, we have to spend hours of time and tons of energy battling with insurance companies, doctors’ offices, medical supply companies, and more. Just to receive the medication and devices we need to stay alive! (Medication and devices that we pay for, by the way.) Whenever I vent to my parents about my frustrations with the healthcare industry, we always lament that it’s an issue we have the resources to battle, while so many others don’t. “Red tape,” as I call it.
Here’s Mallory’s take on it:
“Beyond the implications for my own health, it makes me wonder what happens to the patients who don’t have parents who are willing and able to draft 800-word emails, to scream at people on the phone, to threaten legal action. While in many ways I’m in a position of complete powerlessness at the hands of a company that cares more about their bottom line than about whether I survive (in fact, one that would probably rather I die, because it would be cheaper), I still have an advantage that many patients aren’t lucky enough to possess: two dedicated, tenacious, educated parents with the resources to fight the system. It occurred to me in a heartbreaking moment that the patients who don’t have that are the patients who die as a result of bureaucratic bullshit. It’s so absurd it makes me shake with rage.”
Mallory wrote about her health struggles so eloquently even at the peak of illness and pain. I’m not sure if she ever expected her diary entries to be read or not, but I’d like to thank her either way for chronicling her thoughts. Her memoir taught me so much, both about cystic fibrosis and even about the way that I feel on a personal level.
Salt in My Soul: An Unfinished Life is such an important read for anyone in this world, regardless or ability or disability. It’s an important reminder about what truly matters in life, coming from a person that acknowledges she is at the end of hers.
Thank you to the Smith family for sharing just a little bit of Mallory with us.