Mallory Smith was diagnosed with CF when she was three years old, and spent her life determined to fulfil her mantra of “living happy”. In her 25 years, she trained as an athlete, excelled at university and became a freelance writer and editor specializing in environmental, social justice and healthcare-related communications.
Tragically, Mallory died two months after receiving a double-lung transplant. The diaries she left behind reveal her unshared struggles, teenage dreams, wisdom beyond her years and a deep desire to leave her mark on the world.
Tell us about the book you wrote in 1997, ‘Mallory's 65 Roses’. Why did you choose to write it?
When Mallory was first diagnosed at the age of three, it was hard to get her to do treatment - an inhaled bronchodilator to open up her airways, hypertonic saline to thin her mucus, and vigorous chest percussion therapy.
Every night, when it was time for treatment, she would hide… in the closet, under the bed, anywhere she thought we wouldn't find her. Her dad Mark made up a game he called Astronaut and Pat Pat. Astronaut for the mask that delivered her inhaled medicines, and Pat Pat for the percussion therapy.
I was desperate for a way to explain the disease to her, to her older brother Micah, and to our community, but there was no children's book about CF back then. I wanted everyone to understand why she took pills every time she ate, and why she had to do treatment. It was all so terrifying, and I didn't want Mallory or her friends to be afraid.
So I wrote ‘Mallory's 65 Roses’ (‘65 roses’ is what kids hear when adults say ‘cystic fibrosis’). We read it to her class every September, gave copies to her friends, and used it whenever she was meeting new kids. It worked… Mallory's friends and classmates treated her as if nothing was wrong, and she lived a pretty normal childhood, with school, sports and playdates.
At one point in her journals, Mallory compares you (affectionately!) to a drill instructor, driving her on to exercise when she doesn't want to, during a hospital stay. What was it like playing that role, and balancing that with being a mum?
I don't view the drill instructor role as different from the mom role. My goal was to help her stay alive, and exercise was a key component of that. Physically, the exercise helped her heal, stimulating her immune system and opening up her lungs. Mentally, it helped her maintain her identity as an athlete, a high-intensity performer. And socially, getting her out of the hospital and into contact, however remote or fleeting, with her peers, was vital to her strong sense of connection with others.
Mallory talks from early in the book about her hopes and dreams – what were your hopes and dreams for her, and did they change as hers do during the book?
In the early years, when she wasn't that sick, we were optimistic about advances in medical research and hoped for her to live a more-or-less normal life, graduating college, entering the workforce, getting married and having children. And she did have a fairly normal childhood, with a stellar high school career, both academically and athletically. Socially, she was thriving too.
But by the time she graduated college, it had become clear to us that she would no longer be able to hold down a full-time job, and we adjusted our hopes. She settled well into a writing career, with her blog work and her writing of ‘The Gottlieb Native Garden: a California Love Story’. While we weren't sure she would ever be able to bear children, we continued to hope that she would find true love and be able to have a family, through adoption or surrogacy.
She did find true love. But her health deteriorated quickly after that, and we refocused our hopes and dreams on transplant and staying alive.
What was it like finding out what Mallory had been writing for all those years?
I knew for years that she had been writing. What surprised me when I finally got to read her journal was the complete absence of any expression of anger towards me. I was amazed to realize the depth of her wisdom… she knew that I would be reading her journal, and that memorializing her anger at me there would have slain me. She definitely felt anger, but she must have worked through it on her own. In her journal she expresses nothing but love and gratitude towards Mark and me.
What does it mean to you to have Mallory's experiences immortalized in her book?
Mallory could have left us no greater gift than her memoirs. They have allowed Mark and me to re-live our life with her, with all the joy and sorrow that entails, and to keep her memory alive. We are sure that Mallory's many friends will have a similar experience with the book.
Why did Mallory want to share her story?
At first, I am sure writing was just cathartic for her. But over the years, she must have realized that her experiences, and her insights about them, could be helpful to others, so she continued to write with that in mind. She got a lot of encouragement from Mark and me, from friends, from classmates and professors, about her writing. As her health declined, and she came to realize that her life would be cut short, she wanted to leave behind a gift for others… a legacy… the salt in her soul.
How do you remember Mallory?
Just last night Mark and I were watching videos from Mallory's childhood. She and Micah were the cutest children you could imagine. And she was so full of life, love and vitality! If I don't focus on the tragedy of her untimely death, I can honestly say that she lived a happy, even blessed life. And for Mark and me, that is the crowning accomplishment of our lives.
If you are recently bereaved or are struggling with any of the issues raised in this piece, please take a look at our bereavement resources or contact our Helpline for further support.
Mallory Smith, Salt in My Soul, Hay House UK, £14.99