Three CF Books Worth Reading
Sitting down with a good book--especially while doing airway clearance--is one of my favorite activities to do. I love all sorts of genres of books but definitely find reading stories about CF particularly interesting. There's something about seeing details of your life on the page. Here are three cystic fibrosis books worth reading!
Salt in My Soul: An Unfinished Life
Salt In My Soul: An Unfinished Life is a memoir of a young California woman living with cystic fibrosis named Mallory Smith. For ten years, Mallory quietly wrote about her struggles while living with CF in an intimate diary kept on her laptop. After her death, her mother was instructed to publish the entries for the public.
Salt in My Soul is Mallory’s utterly honest and vulnerable feelings toward the CF, its destruction on her body, and the influence it casts on her hopes, happiness, and relationships. Despite the control CF has over her body, Mallory proves that she is more alive than most and determined to “live happy” although she knows her life will be cut short. It’s a heartbreaking story of a young woman filled with potential urging everyone to live boldly and gratefully.
Salt In My Soul felt like home to me. There were so many moments in the book where Mallory so easily explains the pain and complicated feelings she has towards cystic fibrosis that I thought, “She took the words right out of my mouth,” or “I fear saying this out loud too.” There were many points in her book that tears welled in my eyes from feeling validation through her words of my own struggles with CF.
The fact that Mallory was a young woman around the same age as me made her experiences even more relatable to my own. Her vulnerability in relationships, the way she defied limitations and came to terms with her future was inspiring. I felt as if I found a friend in Mallory who I could expect to speak the words I often could not. I highly recommend any adolescent living with CF at a point of transition in their lives to fill your soul with this story!
Five Feet Apart
Based on the feature film, Five Feet Apart is a young adult novel about two teenage patients with CF named Will and Stella. Stella is an upbeat control-freak whole-heartedly devoted to treatment compliance in an effort to avoid any risk that will jeopardize her chance at a double lung transplant. Will, on the other hand, is cynical and reckless, ignoring his care as he’s accepted Burkholderia cepacia to be the reason for his untimely death.
When the pair meets during a typical CF hospital admission, there’s an instant attraction mixed with just as much disdain. However, between the two they find understanding, comfort, and ultimately, undeniably magnetic love. The catch: the pair can never be closer than six feet apart without risking their lives. Are they willing to steal back a foot to be nearer to each other?
My review: ★★★☆☆
While Five Feet Apart is written as your typical Young Adult novel--predictable and often cheesy--I did enjoy reading the story of two characters I could really relate to. It’s bizarre to see the unique experience of living with CF played out in a novel (and on the big screen). It felt very validating to see the routines, emotions, and sacrifices someone makes with CF every day.
Is the love story believable? Yes, it reminded me of a few CF couples I know but with a dramatic flair. Is it true to CF life? For the most part, I thought it was accurate enough for a general audience. Overall, it’s a quick and easy read for anyone looking for a love story that hits close to home.
My Foreign Cities
Stephen is a bold and brash teenager when he meets uncommittable Liz in high school. Friendship ultimately turns romantic as Liz slowly becomes more aware of the potential role CF plays in their future. Many years later, untraditional Liz decides to marry Stephen because everything she once believed and valued changes in the context of CF.
Told from the perspective of a CF spouse, My Foreign Cities is a reflection of their marriage as Stephen gets sicker. She explains the struggles of managing CF as the partner and the grip of fear of Stephen dying has on her. Their love is constantly trying to outrun CF, but which force will win in the end?
My review: ★★★★☆
Liz and Stephen’s story is unique because it is told through the eyes of the CF spouse. Since I have CF and have been married for six years--much like Liz and Stephen’s story I have known my husband since high school and we were married young--I found it interesting to hear Liz’s thoughts. It broke my heart to listen to the pain she felt every time Stephen declined or needed to go into the hospital.
Hospitalizations became routine for the couple and I related to the traditions and the many times they escaped the hospital to find some sense of normalcy. It reminded me a lot about our experiences of dealing with the hard and uncertain future when you love someone with CF. While some of the sections of the story were minorly triggering, it gave me an appreciation for some of the emotions and fears my own husband might have.
What other cystic fibrosis books have you read? Share below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?