For our September 7, 2022, meeting, we welcome Diane Shader Smith. Diane is a writer and cystic fibrosis advocate whose daughter, Mallory Smith, was diagnosed with cystic fibrosis (CF) when she was three years old. From age nine to her death at the age of twenty-five, Mallory kept comprehensive diaries, recounting her chronic illness, her relationships, and her determination to speak out about her experience. Diane Shader Smith now speaks out about CF, especially about the patient experience and the critical role parents play in treating a child with chronic illness.
Salt in My Soul: An Unfinished Life is a compilation of Mallory Smith’s diary entries, edited by her mother and published posthumously. This extraordinary memoir is a snapshot of coming of age, an intimate portrait of a young woman living her life, struggling with who she is, what she hopes to accomplish, and what she fears. Despite the daily challenges of endless medical treatments and an understanding that her illness would keep her from leading a normal life, Mallory wrote with a determination and spirit that shine through the pages. In her words, “I am limited in what I can do, but not in what I can say.” Mallory chronicled her many hospital visits and the medical insights she gleaned, along with her relationships with family and friends and her hopes and desires for herself and the world. With this presentation, Diane Shader Smith provides a portrait of a brave young woman navigating normal adolescent and young adult experiences, set against the backdrop of a chronic illness. Salt in My Soul was recently optioned for production by the Oscar-nominated directors who were responsible for two groundbreaking documentaries, The Invisible War and The Hunting Ground.