Mallory’s Legacy—Living with Optimism and Cystic Fibrosis

Stanford University graduate and cystic fibrosis patient Mallory Smith lived life vibrantly until her death at age 25. She left behind a memoir, “Salt in My Soul – An Unfinished Life,” that reveals much about hope, love, care and chronic illness.

Diagnosed with cystic fibrosis (CF) at age three, Mallory Smith grew up by all accounts to be a remarkable young woman. Despite coping with one of the most common and serious genetic diseases in America, Mallory was an energetic and curious child who swam in the ocean, played sports and eventually graduated Phi Beta Kappa from Stanford University. While enduring 69 hospitalizations, Mallory became an advocate for her disease, raising more than $5 million with her family for CF research. Upon graduation, she embarked on a career as a journalist, inspiring many who met her, while living as normal a life as possible.

In time, however, Mallory’s health began a rapid decline—her only option for survival was a double lung transplant. The University of Pittsburgh agreed to take on the complex surgery, and she and her family dared to dream of a new life. But within weeks of receiving her transplant, and shortly after celebrating her twenty-fifth birthday, Mallory was re-admitted to the hospital with pneumonia. The superbug that her body had harbored since the age of 12, Burkholderia cepacia bacteria, had become resistant to all antibiotics.

Mallory Smith—cystic fibrosis patient, professional writer, lover of salt water and radically optimistic force of nature—died on November 15, 2017.

Mallory’s memoir

Mallory, who lived life large, left behind an amazing memoir based on journals—2,500 pages—she had been writing from age 15. Her words, edited in large part by her mother, give us insight into how chronic illness can affect adolescents and young adults, the perseverance it takes to live with a chronic disease from childhood on, and why hope is essential to healing. Her narrative also expresses her joy at being alive, and encourages us to follow her mantra: “Live Happy.”

Last month, Mallory’s parents, Mark Smith and Diane Shader Smith, joined one of her physicians, David Cornfield, MD, at Lucile Packard Children’s Hospital Stanford in a conversation about Mallory, chronic illness, optimism and caregiving.

Speaking about her daughter’s life and legacy, Shader Smith recalled that Mallory looked deceptively healthy to those who did not know she had CF; she was a valedictorian, 3-star varsity athlete and beloved prom queen, her mom recounted. When Mallory was a child, she added, her illness was at that point invisible.  In an effort to explain the disease to other children and parents, Shader Smith wrote a book called “Mallory’s 65 Roses.” She chose the title, she said, because when adults say “cystic fibrosis,” children hear “65 roses.”

Mallory, in turn, titled her life’s work “Salt in My Soul” since “salt is part and parcel of the cystic fibrosis experience. Broken proteins lead to an imbalance of salt inside and out of the cells.”

“If you kiss or lick the skin of a CF-er, you’ll get a firsthand taste, literally, of how fundamental salt is to the disease.”

Mallory Smith, author, Salt in My Soul

Mallory also felt the healing effects of salt water when she swam in the Pacific Ocean, which she did often as a child in Southern California and on many family trips to Hawaii for her health. Salty water, she felt, helped counteract some of her worst symptoms.

Happiness was another elixir she and her family used to fight the disease.

“Parents of a child with a chronic illness have a moral obligation to be happy,” Shader Smith told the doctors, nurses, professors, members of the CF community and others who had come to hear Mallory’s story.

Emphasizing that parents play a big role in treating a child’s illness, especially for pediatric CF patients when they are at home, she urged the Stanford audience to move in closer: “This is where so much of Mallory’s story took place.”

Mallory’s brother, Micah, talked about growing up with his sister. Although she was younger, he said, “She taught me to be kind, accepting, not to judge people.”

During the conversation, Cornfield asked what Mallory valued most in her caregivers. “When they related to her as a person, not a patient,” answered her mom. “Kindness,” she added, recognizing Paul Mohabir, MD, another of Mallory’s doctors in the audience.

Mallory’s father said that on the day she was diagnosed, they knew that their life would change forever. Throughout Mallory’s life, they learned not to take any day for granted.

Asked about their family’s relationship to hope, Mallory’s parents agreed that they found Mallory to be a remarkably hopeful person. Her memoir, said her mom, showed her to be a realist.