在失去中寻找意义：Maryanne O ' hara, 1998

Cystic fibrosis is a complicated disease that doctors were still struggling to understand and treat in Caitlin’s early years. 近乎正常的时期被突如其来的医疗危机打断。 Maryanne became serious about writing during Caitlin’s time at 贝博体育app. 在爱默生学院获得文学硕士学位后，玛丽安娜开始了写作和编辑短篇小说的职业生涯，并在爱默生学院和克拉克大学教授创意写作。 Her debut novel, 级联, 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. 她于2016年去世，享年33岁。

 

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.

 

小火柴：悲伤和 《光》于2021年4月由HarperOne出版。 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.

 

在书中很明显，凯特琳从她所培养的深厚友谊中获得了难以置信的力量，而这些友谊反过来又在她的一生中得到了培养。 “Caitlin’s close friends from 贝博体育app are still our close friends,” notes Maryanne. 在5月，他们组成了一个名为“无条件爱组”（简称UCL）的团体，并发誓要无条件地永远爱对方。 “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. 囊性纤维化是通过肺功能来衡量的。 Although Caitlin’s lung function was 90% during her time at 贝博体育, 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. 11岁时，一场特别可怕的肺部感染破坏了她的肺叶，需要手术和几个月的住院治疗。 Maryanne recalls taking a photo of Caitlin, whose sports team nickname was ‘pitbull,’ during a basketball game in the 贝博体育app 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.” 玛丽安补充说，人们总是很难理解她有什么问题，因为她看起来很正常。 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.”