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Diane was 35 when her 3-year old daughter was diagnosed with Cystic Fibrosis. When Mallory died at 25, she asked her mother to publish her memoir. Diane has made it her mission to preserve her daughter’s legacy by traveling around the country to spread Mal’s wonderful insights on love, life, and chronic illness. 

Tell us a little about your background.

I was born in New York, moved to LA when I was 10, and have lived in California ever since. I’ve worked in TV, radio, PR, and have written books and articles (newspaper and magazine). I went to UCLA for four years and graduated with a degree in English – American Studies. I met Mark at the gym in 1987, got married in 1988, had Micah in 1990 then Mallory in 1992.

Our family when Mallory was young

When Mallory was three years old, she was diagnosed with cystic fibrosis (CF). For those who don’t know, CF is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time (learn more at Cystic Fibrosis Foundation). Her diagnosis meant incorporating daily breathing treatments and chest percussion therapy in addition to taking a slew of antibiotics at different times of the day. As she got older, more therapy, IVs, chest x-rays, and clinical trials were needed to keep her stable. However, none of this stopped her from playing varsity sports, applying to and attending Stanford University, graduating Phi Beta Kappa, and working as a writer/radio producer after college.

Mallory graduating college

On top of being her parents and caregivers, Mark and I quickly learned how to become her advocates; it was our job to stay on top of the latest research in CF, always on the hunt for possible treatment options that her doctors might not have known about yet. Mark actually discovered something called Phage Therapy, a potentially life-saving treatment he brought to doctors, who then approved it for Mallory in the fall of 2017.

Unfortunately, that treatment was administered too late to save Mallory, but we learned from the autopsy that the phages were starting to work. A lab in Israel has found a second phage cocktail that is effective against Mallory’s bacteria and they named it after her (Stat News).

Mallory getting treatment

Mal passed away on November 15th, 2017. She was 25 years old. She was a writer, and quite the gifted one at that. She recorded her thoughts and observations in a journal on her computer for over ten years—leading up to her death—about struggles and feelings too personal to share during her life. She left specific instructions for me to publish it posthumously and, in turn, I’ve now made it my life’s mission to spread Mallory’s message through her memoir Salt in My Soul: An Unfinished Life.

 

What moved you to turn Mallory’s years of journaling into something that could help and inspire others?

Mal journaled for many reasons. She journaled to remember memories, good and bad. She journaled to express her emotions, good and bad. She journaled to cope. She journaled to inspire. It was Mallory who wanted her insights out in the world to help others live life to the fullest—healthy or unhealthy.

As her mother, it was my duty to honor that wish by publishing her work. I pulled 350 pages from the 2500 Mallory left me and then enlisted the help of my sister and an editor to prepare the manuscript for publication. A big New York publisher called Mallory’s writing “life-changing,” and agreed to the title my sister proposed: Salt in My Soul: An Unfinished Life, making virtually no changes to Mallory’s writing.

Mallory writing

Finally, her remarkable insights were going to be heard, which not only helped my grieving process, but also those living with, or loving someone with, chronic illness. The big surprise is that people with no connection to CF, transplant, invisible illness, or mental health issues are finding it to be inspiring. The press calls it a, “must-read.” If only Mallory was able to see that her words are helping so many.

As part of my mission to continue spreading my daughter’s message, I’ve completed 100+ talks to date at places like The New York Public Library, Harvard Medical School, Stanford, Yale, University of Pennsylvania Medical School, TEDx, Microsoft, Facebook, Google, and so many more. Mark’s mission is to bring Phage Therapy to mainstream medicine, bringing it to the attention of cystic fibrosis patients and their families, who are desperately in need of treatments for superbugs.

It’s important to note that since the book’s publication, we have donated more than $25,000 from book sales. In addition, we have raised more than $200K (on top of the five million dollars raised while Mallory was still alive) through Mallory’s legacy fund.

 

How did you prepare to focus on this goal while still grieving and handling the loss for yourself?

Sharing Mallory’s story and preserving her legacy helps. And I’m part of a grief group. Each of us will tell you that every day is hard. I’m doing, in the wake of Mallory’s death, what I did in her life: taking care of her, making sure her voice is heard. It’s an honor and a privilege to be the person she chose to sort through all 2500 pages of her teenage laments, the person who is now passing her insights on to medical schools, businesses, universities, mothers and fathers, non- profits, and health care providers.

 

Tell us what it’s like to give talks, presentations, and go on book tours spreading Mallory’s words for your next act

I’ve been on the road for almost a year now—speaking at the most prestigious venues—and it’s rewarding to see how moved everyone is by Mallory’s story and by the wisdom she offers. Mallory wasn’t a celebrity or a public figure, just a typical “twenty-something” who was unlucky to be born with a progressive genetic disease. Her ability to write and her discipline to document her journey is how she was able to leave such a gift.

So many people have written to say they loved Salt in My Soul and that Mallory’s words resonate. Her relatability stems from the topics she tackles.

 

What is/are the most important point(s) you think Mallory wanted her readers to take away from Salt in My Soul ? 

  • That every caregiver has the power to make decisions that affect a patient’s daily quality of life
  • That there’s a need for balance with pain management during the opioid epidemic (over and under medicating)
  • That the issue of disclosure—when to tell friends, significant others, and workplace colleagues about your invisible illness—is always challenging
  • That when you hit Insurance obstacles or have problems with access to healthcare, you have to fight
  • That fear, depression, and anxiety are part of the human condition and need to be acknowledged and dealt with
  • That GI issues cause emotional trauma in addition to physical distress
  • That EVERYONE has body image issues – even those society considers to be beautiful
  • That you need to Voice YOUR Choices for end of life issues

Salt in My Soul An Unfinished Life is more than a story of a girl with an illness. At its core, it’s a snapshot of a 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. Mallory writes about topics that so many young people experience—wanting to fit in, wondering if anyone will love her, feeling insecure about her looks, grappling with breaking away from her parents and being independent, wondering what the future will look like. In doing so, she teaches us about resilience, discipline, inspiration, perspective, and insight.

Mallory with her boyfriend Jack

 

What advice do you have for mothers in your situation?

We should all ask questions, seek answers, and share our stories because you never know where help and support will come from. I also think everyone should read Salt in My Soul because Mallory articulates feelings and emotions most of our children feel but often don’t share.

Finding a small group of women who lost their kids around the same time I did is the most helpful tool as they understand everything I’m feeling. The other most important thing is to think about legacy – yours and your children – to ensure you’re leading a purpose-driven life.

 

What’s the next step on your mission to preserve Mallory’s legacy?

Salt in My Soul is a top choice for high school and college curriculum so in 2020 I’ll be speaking in schools and universities across the country. We are also working on a documentary with extraordinary filmmakers, that will be out in 2021.

 

Connect with Diane Shader Smith:
Email: dianeshadersmith@gmail.com
Book website: saltinmysoulbook.com
Tedx Talk
Facebook Live interview with Kelly Corrigan
Book Facebook: Mallory Smith
Book Twitter: @Salt_In_My_Soul
My Instagram: @wingmomdss
Book Instagram: @saltinmysoul