Mallory Smith died of complications following a double-lung
transplant for cystic fibrosis (CF). She was twenty-five years old and kept an
extensive journal on her computer for 10 years. Salt in My Soul: An
Unfinished Life is her memoir, edited by her mother, Diane Shader Smith,
from the 2,500 pages of notes, observations and reflections which Mallory Smith wrote. The title refers to the intimate relationship of salt imbalance in
cystic fibrosis, and the fact that Mallory felt her most well while swimming in
the sea. Diagnosed at age three, she spent much of her days and nights treating
the disease with medication, nutrition, chest percussive treatments, breathing
treatments, adequate sleep, and aggressive treatment of infections.
Unfortunately, while still a child her lungs were colonized with B. cepacia, a
resistant bacteria ‘superbug’ which makes transplantation highly risky and hence
leads to most centers to not accept CF patients onto their wait lists. Ultimately,
University of Pittsburgh does accept Mallory as a transplant candidate,
although her health insurance puts up every road block possible to her
receiving care.
Mallory Smith was extraordinarily accomplished – she graduated
from Stanford University Phi Beta Kappa, and became an editor and freelance writer.
She was also deeply engaged with life and others; she was grateful for her
loving, devoted family, and she developed close, fierce friendships within the
CF community, among classmates, and eventually, she fell in love.
She resists being called ‘an inspiration.’ She writes: “I’m
not an inspiration. I’m just a person, grounded in compassion, striving to
achieve empathy and wanting to make my way with goodness and grace.” (p. 171)
She marvels at the miracle of life: “Our existence is the result of stars
exploding, solar systems forming. Our Earth having an environment hospitable to
life, and then, finally, millions of highly improvable events accumulating over
millions of years to bring us, a capable and conscious bag of stardust, to the
here and now.” (p 111) Her memoir is a story of living and dying from CF, but
it is also an inside look at the brief life of young gifted writer.
