A truth binds the lives of two women who have never met. One sees into the other’s soul through her writing — for both women, cystic fibrosis (CF) has been their greatest blessing and most dreadful curse.
Reading Mallory Smith’s posthumous memoir, “Salt in My Soul: An Unfinished Life,” has led me to reflect on my own life and to reexperience the same emotions that she expresses through her writing: gratitude, fear, sadness, bitterness, and joy. I empathize with her on a deep level because I suffer in similar ways. CF ravaged Mallory’s lungs. She received a lung transplant, but, unfortunately, bacteria from her original lungs reinfected her transplanted lungs shortly afterward and overwhelmed her weakened body.
My battle with CF continues. I will be listed for lung transplant within the next few months. Following her acceptance onto a transplant list, Mallory was torn between wanting to plan adventures and uncertainty about whether her body would be able to take her on any of them. This conflict permeates her diary entries. I share a similar struggle — like Mallory, I wonder about the lifestyle and carefree spirit I might have had if I didn’t suffer from a disease that makes access to electricity for breathing treatments and boiled water to clean my nebulizers an absolute necessity. Would I hop on a flight at every opportunity to explore distant countries and meet people from all walks of life?
Mallory’s writing shows her vulnerability and tendency toward melancholy. I was inspired by her accomplishments, joy, and vivacity. Her life outside of her moments of frustration and heavy emotions resonated with me because we shared much more than the same disease.
We were a similar age. Growing up, we both went to the school nurse for enzymes and to drink weight gain shakes. While other kids loved to take a sick day from school, we became anxious about missing classes. We gave our dads nicknames; hers was “Pidge,” mine is “Hali.” Our moms made sure we were eating enough and didn’t forget our sweaters, and each year they educated our new teachers about our illness. They gave us wise advice about friends and boys. They also used tough love when we needed it.
When we were feeling sorry for ourselves, they reminded us of how much worse it could be. Typically we could participate in activities with friends and our disease could be invisible. Our outward appearance of health hides our decaying lungs inside. Others wondered about our sickness until we couldn’t conceal it any longer. It was a blessing to be able to cover up our disease since neither of us wanted the label of “sick girl.”
However, breathing oxygen through a nasal cannula announces that you are different. We wait until we are in the privacy of our homes or in the company of close friends to cough until we gasp and spit up huge globs of mucus. When these gasps turn into long seconds of being unable to catch our breaths, the stress causes our hearts to palpitate; our anxiety rises and we recognize the reality of our sickness. As Mallory recounts a night of coughing up blood as she lay gasping on the floor, I could feel her anxiety and also her strength that helped her to remain calm.
In her last days, Mallory’s family did everything they could to obtain a treatment called phage therapy that might have saved her life had it been administered sooner. I have received this treatment with success. Phage therapy binds our lives together on one more plane.
CF shaped our characters and our understanding of life, and I believe that, like me, Mallory wouldn’t have traded the curse and blessing of CF. This disease takes, but it also gives. It took Mallory’s life too early, but it also allowed her to form genuine connections with others. She understood the brevity of life and the importance of the memories and emotions that give it meaning. At the most basic level, Mallory and I share the same outlook on life — living and loving as deeply as we can with a body that could fail us tomorrow and a spirit that will never die.
Mallory was a writer and, like me, she expressed herself best through writing. She hoped to provide insight to those learning about, living with, and loving someone with CF. During her brief time on earth, she did that and more. Her words live on.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.