From the Bookshelf of RN_select_all_books_that_apply…

Salt in My Soul: An Unfinished Life

Mallory Smith

Why we're reading this: Memoir of patient with CF. Describes the struggles CF patients daily endure. The hope for phage therapies…more
[close] Memoir of patient with CF. Describes the struggles CF patients daily endure. The hope for phage therapies to treat drug resistant bacteria.

Enjoy my review: https://www.goodreads.com/review/show...

Find A Copy At

Libraries

Group Discussions About This Book

No group discussions for this book yet.

What Members Thought

May 18, 2024 Nic rated it it was amazing

Shelves: memoirs, medical, nonfiction, science, strong-women, death-and-dying

I dream that one day CF will stand for Cure Found. I dream that one day breathing will become so easy that I could take it for granted, although I never will. p. 63

Thanks to Mallory Smith's brave memoir we are shown what patients with cystic fibrosis (CF) endure. Her fledgling career was taking shape as a writer and her memoir is thoughtfully written. She brings home the struggle of patients' knowledge of a shortened life span and, despite that knowledge, their struggle to continue with life an I dream that one day CF will stand for Cure Found. I dream that one day breathing will become so easy that I could take it for granted, although I never will. p. 63

Thanks to Mallory Smith's brave memoir we are shown what patients with cystic fibrosis (CF) endure. Her fledgling career was taking shape as a writer and her memoir is thoughtfully written. She brings home the struggle of patients' knowledge of a shortened life span and, despite that knowledge, their struggle to continue with life and learning. Thanks to new breakthrough medications for treating CF, many patients' lives are greatly extended. Mallory, unfortunately, acquired a drug resistant bacteria which colonized her lungs. The ending is frustrating because it seems clear that if phages were tried sooner, to eliminate the bacteria, she probably would be with us still. However, hindsight is 20/20 and, at the time, use of phages to combat bacteria was, and still is, very new terrain. Stepping stones along the path to cure are hard won. This is an excellent, good read, although, a very sad ending. Here is a song one of Mallory's friends wrote re: CF: Clear Lungs

Mallory says it best:

My life on campus is a parallel universe that I sometimes feel part of, but often not, because of the ticking time bomb inside my body - a bomb that often blows to bits any sense of normalcy. The home base of my daily reality is Stanford Hospital. 78

"Sometimes," he said, "tough love and brutal honesty are the only arrows left in our quiver." 101

My intuition was right. While I was swimming, surfing, and fighting CF, researchers in Australia were discovering what I already knew: CF patients who frequent the ocean live longer - ten years longer. 101

When Dr. Mohabir was talking, he kept circling back to the idea of doing what makes me happy. And I kept thinking about people. Not places I want to go or bucket list things I want to do. It was about the people I love, getting enough time with them. Not feeling like I'm leaving them behind. Or being left behind myself, while their lives all move on. That's the problem with death. For everyone else, It's an event, it's sad and shitty and grief-inducing, but then life goes on. For the deceased, that's it, that's the end. 201

But life is a balancing act - as patients, we have to keep our bodies healthy, yes, but also our minds. We have to know that there's life out there to be lived, however sick we get. Whatever it takes to remind us of that is worth it, in my eyes. Calculated risk-taking is the name of the game for me now, rather than cautious sheltering. 215

Hell hath no fury like a mom who thinks someone is getting in the way of her daughter's transplant evaluation. 224

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. When you're in need of a lung transplant, and the people on the other end of the line are intentionally trying to block you from getting lifesaving care, and you're weary and you don't have parents to fight your battles, you die. 224

I feel like people with CF are privy to secrets it takes most other people a lifetime to understand. How lucky we are to be alive. How lucky anyone is who has their health. How we should be appreciative of anything that's in our control since our health is not. That we can leave behind a legacy when we go that will impact others. That simple things are often the most beautiful. That love and happiness are the most important things to strive for. That ultimately, we shouldn't give a damn what other people think, because everyone's making their own way and everyone's facing different struggles that others aren't aware of. CF has given me my value system and ultimately, no matter how hard it is. I'm grateful for it. 236

I need to be at peace with the idea of death while also fiercely wanting to live; it's hard to feel both at the same time. 241

"When I first heard about phage therapy," he said, "I asked Mallory's doctors if we could treat her before she had her lung transplant, so we could clear her infection and give her new lungs a chance." I nodded. It made total sense. "But they had never heard of this treatment," he continued. "They thought it was too risky and dismissed it. I can't help but wonder if it could have worked." 298

As resistant strains of bacteria become more virulent and common, phage therapy holds out hope for a future cure when antibiotics fail us. 299 ...more

3 likes · Like · see review

Jun 02, 2024 Reilly Williams rated it it was amazing · review of another edition

Group Home Bookshelf Discussions

Photos Videos

Send invite Members Polls