The Value of the Patient Voice: A Review of Salt in My Soul by Mallory Smith

Extract

Mallory Smith’s posthumously published book, Salt in My Soul: An Unfinished Life, is an insightful and moving account of one young woman’s experience living with a chronic, often invisible, illness.¹ Mallory was diagnosed with cystic fibrosis (CF) at age three and began writing in a journal when she was 15. According to those close to her, Mallory wrote consistently over the span of 10 years, until shortly before she died at age 25 from complications related to a double lung transplant. Much of what Mallory included in her journal was too difficult for her to share with family and friends while she was alive, yet she hoped that her writing would one day “offer insight for people living with, or loving someone with, chronic illness.” (page x) As Mallory explained, “I want to create a piece so moving that people are in disbelief. And I want it to be like handing people a pair of glasses, giving them a way of seeing something they didn’t even realize they weren’t seeing.” (page 291) Shortly before Mallory died, she shared the password to her 2,500-page journal with her mother, along with instructions for how to select excerpts for what would become Salt in My Soul.