Cystic fibrosis is a complicated disease that doctors were still struggling to understand and treat in Caitlin’s early years. Periods of near normalcy were interrupted with sudden medical crises. Maryanne became serious about writing during Caitlin’s time at Fay. After earning her MFA from Emerson College, Maryanne embarked on a career writing and editing short fiction and teaching creative writing at Emerson College and Clark University. Her debut novel, Cascade, was published in 2012 and selected as a Boston Globe Book Club inaugural pick and a finalist for the Massachusetts Book Award. However, soon after its release, Caitlin’s health deteriorated rapidly to the point that she was placed on the lung transplant list. Maryanne describes the three years they spent waiting for the transplant call as a kind of “twilit limbo.”
In the end, the call came, but too late for Caitlin’s fragile health. She passed away in 2016 at age 33.
In the midst of excruciating grief, Maryanne found herself writing more on the 9LivesNotes blog she had started during Caitlin’s illness, and sharing stories became a way to find meaning. She began to notice signs and synchronicities in daily life that hinted again and again of Caitlin’s enduring presence. She decided to tell the story of this journey “not to share misery or to relive it, but to ask the big questions and to hopefully inspire people to think about what’s really important at the end of the day. The only thing that felt right was writing a book,” she says.
Little Matches: A Memoir of Grief and Light was published by HarperOne in April 2021. It has already been selected as a People Magazine Book of the Week, and The Boston Globe featured Little Matches on April 15 in its “Story Behind The Book” column.
It is clear in the book that Caitlin drew incredible strength from the deep friendships that she nurtured, and in turn, was nurtured by throughout her life. “Caitlin’s close friends from Fay are still our close friends,” notes Maryanne. At Fay, they formed a group called the Unconditional Love Group (UCL for short) and vowed to love each other unconditionally forever. “When Caitlin turned 21, they presented her with a big “UCL Scrapbook” full of photos and pages from their growing up years,” recalls Maryanne. Later, when Caitlin was so sick that even washing her hair was too exhausting, their act of unconditional love and care was to fly Caitlin’s favorite hairstylist from Boston down to Pittsburgh to cut and color her hair.
However, for much of Caitlin’s school years, it was her deceptive normalcy that posed one of the most significant challenges. Cystic fibrosis is measured by lung function. Although Caitlin’s lung function was 90% during her time at Fay, she was prone to serious lung infections. She also required a once or twice-yearly “cleanout” composed of two weeks of IV antibiotics and respiratory treatments to maintain her baseline. At age 11, a particularly horrible lung infection ruined a lobe in her lungs, requiring surgery and months of hospitalization. Maryanne recalls taking a photo of Caitlin, whose sports team nickname was ‘pitbull,’ during a basketball game in the Fay gym just weeks before the surgery. “I remember looking down the court to take that photo and thinking that you would never know this person has to have part of her lung removed.” It was always hard for people to understand that there was something wrong with her, adds Maryanne, because she looked so normal. By the time she was ready for transplant and needed oxygen 24/7, she recalls Caitlin saying that she, “used to dread that this day would come, but at least now people understand, because I look as sick as I am.”
Maryanne is finding that Caitlin’s story, and her own, have resonance with people who may not have experienced the particular challenges of cystic fibrosis but understand all too well the challenge of invisible illness. “You could look at someone like Caitlin, who looked so completely normal, and never know, but everyone has an invisible something,” says Maryanne. “I think that’s an idea that young people, in particular, respond to because everything can look great on the outside, but in reality, we all have something we are struggling with.”