Lena Welch ‘20
New Media Editor
The Jewish Law Students Association, Health Law Association, and SBA Health and Wellness Committee welcomed Diane Shader Smith and Mark Smith to UVA Tuesday, April 2 to discuss their daughter Mallory’s posthumous memoir, Salt in My Soul: An Unfinished Life. Salt in My Soul is already an Amazon, L.A. Times, and Publisher’s Weekly bestseller and has been reviewed by outlets such as Buzzfeed and Bustle. Diane and Mark are in the midst of a book tour, during which they aim to speak at sixty-five locations in honor of Mallory’s life with cystic fibrosis.
Lauren Lipsyc ’19 organized the Smith’s trip to Charlottesville, and she noted that Salt in My Soul is particularly important for law students and other folks who work exceptionally hard.
“The book is so important for remembering why we live life and what our motivations are for living life,” Lipsyc said after the event. “People need to remember to stop and take deep breaths and remember how they want to live their lives, so that their lives don’t just pass by.”
Diane spoke at length about Mallory’s life and focused on the lessons she and her family learned from her experience with a chronic illness that required frequent and extended hospital stays. Mallory was diagnosed with cystic fibrosis at age three. Early in Mallory’s childhood, Diane wrote a children’s book, Mallory’s 65 Roses, to not only remove any fear from the treatments Mallory needed, such as using a nebulizer and chest percussion, but to also explain Mallory’s illness to her friends and classmates. Early on, Diane and Mark realized the important role parents play in taking care of a child with a chronic illness.
At age twelve, Mallory learned she contracted an untreatable superbug, B. cepacia. The family and doctors knew there were three possible outcomes with this diagnosis: “[A] peaceful coexistence with the bacteria,” a quick death, or a steady ten-year decline to death.
“I adopted a mantra, ‘no pity party,’” Diane said. “My goal was to find joy for Mallory in every day.”
Mallory adopted “live happy” as her own mantra. And Mallory seemed happy. She was described by her doctors as the perfect patient, with a special talent for describing her symptoms. However, Salt in My Soul reveals that behind her happy façade, Mallory struggled with anger, anxiety, and fear.
As Mallory grew older, when and how to reveal her invisible illness became more complicated. Mallory left home in Southern California to attend Stanford, where she graduated Phi Beta Kappa. She struggled with not wanting to burden her friends and loved ones with her illness, and it was especially challenging when she met “her real-life Prince Charming,” Jack. But she also had to tell employers that she had cystic fibrosis. On one occasion, she was offered a writing job, but after disclosing her diagnosis, the employer determined that it would not be a good fit, even though Mallory had already written a book.
In addition to Mallory’s personal challenges, the Smiths faced difficult situations with their insurance, recalling that it took a miracle―in the form of a family connection―to turn a ‘no’ into a ‘yes’ when it came time for Mallory to get a double lung transplant. University of Pittsburgh Medical Center was the only hospital willing to perform the transplant given Mallory’s infection, and ultimately the insurance company agreed to pay for the out-of-network surgery. Mallory detailed the battles with the insurance company, battles led by her Harvard Law graduate father, in Salt in My Soul.
“Insurance companies are inflicting needless additional suffering on patients in crisis, and it’s outrageous and incomprehensible,” Diane said.
On September 11, 2017, Mallory underwent a double lung transplant, after a few dry runs, in which either the lungs were not viable or Mallory was the backup candidate. However, Mallory caught pneumonia a few months later and passed away on November 15, 2017.
Mallory began journaling on her laptop at age fifteen, and her journal entries provided the basis for Salt in My Soul, chronicling her life and leaving behind her legacy. Her parents’ lives were also transformed by Mallory’s life. Diane said she wants to share her lessons learned as a health care advocate, especially the insurance challenges and the difficulties in getting Mallory’s pain fully addressed. Mark has been instrumental in increasing the viability of phage therapy as a treatment for children with cystic fibrosis.
All profits from Salt in My Soul are going toward phage therapy research. Phage therapy has proven successful in treating post-operative patients with hospital-acquired infections and that has increased in popularity after Mallory’s highly publicized case. For those interested in learning more about Mallory’s incredible life in her own words, Salt in My Soul is available for purchase online.