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Breathe Amanda J. Young To cite this article: Amanda J. Young (2016): Breathe, Health Communication, DOI: 10.1080/10410236.2015.1032852 To link to this article:

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Date: 16 March 2016, At: 23:33



Breathe Amanda J. Young

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Department of Communication, University of Memphis

When a member of our congregation brings a child into the world, we place a single red rosebud on the lectern. But some children come into the world with 65 roses. That’s 64 too many. Farrah,1 my niece, was a child with too many roses. Farrah had cystic fibrosis2 (CF), a ravaging disease with the moniker “65 roses,” a young patient’s mispronunciation of the name (Cystic Fibrosis Foundation [CFF], 2014). My niece lived her 21 years in high gear, intending to experience every aspect of life, and, like most teenagers, sometimes for better and sometimes for worse. When Farrah was born in 1977, doctors predicted that she would live to about age 12 years. No one in our family had heard of cystic fibrosis, an autosomal recessive genetic disorder, meaning that both parents must carry the defective gene for the child to have the disease. Medical researchers now know that this gene has many variations, or mutations, some of which affect the severity of symptoms and course of treatment (Massie, Castellani, & Grody, 2014). In the disease narrative of CF, these researchers can name the exact mutation of the gene. In contrast, individuals who suffer from CF create illness narratives, where ordinary words take on meanings that only fellow sufferers fully understand. Farrah’s life was marked by defining moments. But in addition to random events and expected milestones, Farrah’s moments included her first hospitalization, first bronchoscopy, first PICC line,3 first ride in a Life-Flight helicopter, first loss of a fellow CF sufferer and friend. Another defining moment for Farrah was moving to Pittsburgh when she was 18 to live with me. Then, at age 20, came two of the moments that most defined her life. The first was as a CF sufferer. In May 1997, she sat up in her hospital bed to snuggle her kitten (smuggled into the hospital, in collusion with the nurse) and decided she would fight to recover from a double lung transplant. The second moment, 5 months later, was that of a young woman in love. In October she handed her wedding bouquet of white roses to her maid of honor and best friend, Dannie, a veteran of her own share of bronchoscopies and

PICC lines. Eight months later, on June 30, 1998, Farrah’s moments on earth were gone. About 30,000 people in the United States have CF, the most common “life-shortening” inherited disease that affects children (Massie & Delatycki, 2013). “Life shortening” was not in the narrative when CF’s hallmark symptom, salty sweat, was described in 1857 in The Almanac of Children’s Songs and Games from Switzerland: “The child will soon die whose forehead tastes salty when kissed” (Littlewood, 2009). In 1938, when Dorothy Anderson described the disorder as “fibrocystic disease of the pancreas,” sufferers usually died in infancy. In the 1950s, children with CF seldom lived past 5 or 6 years (Littlewood, 2009). Since then, with developments of new antibiotics, nutritional support, and respiratory treatments, each decade has seen dramatic extensions of life span. Now the median age of CF patients is 37 years (CFF, 2014). With a surge of improved treatments in the mid-1990s, many CF patients were living long enough that they had to redefine themselves: Like other teenagers, they now needed to plan for a future. For the teens I knew who had CF, these were startling moments, without clear direction. They required a new forging of identity (Berntsson, Berg, Brydolf, & Hellström, 2007; Jessup & Parkinson, 2010). Graduating from high school? Planning for college? Getting married? Having children? I knew Farrah longed for what she saw as a normal life trajectory. But when she asked me, during her last stay in the intensive care unit (ICU), whether the insertion of an abdominal feeding tube would preclude her ability to have children, I realized how deep and heartbreaking that longing was. For Farrah and her friends, life was always cyclical: another 4-week hospital stay for IV antibiotics, another bronchoscopy, another battle in the love/hate relationships with respiratory therapists. But the cycle also included reunions with friends in their illness community, which created the types of social interactions that are so vital in teenagers’ lives. In their bittersweet reunions, these friends made stories together (Rawlins, 2009), not only as fellow CF sufferers but also as a

CONTACT Amanda J. Young [email protected] Department of Communication, University of Memphis, Room 212, Art and Communication Building, Memphis, TN 38152. Color versions of one or more of the figures in the article can be found online at

“Farrah” is not a pseudonym. Her parents and husband gave me permission to use her name, knowing that Farrah would be ecstatic to tell her story. “Dannie,” “Rachel,” “Amy,” “Jim,” and “Tony” are pseudonyms. 2 Cystic fibrosis is a life-limiting, genetic disorder that causes thick mucus to “clog” the digestive and respiratory tracts. In the lungs, the mucus traps bacteria, resulting in severe lung infections and compromised respiratory function. 3 PICC is an acronym for “peripherally inserted central catheter.” It is inserted into a vein in the arm, allowing continued access for drawing blood and administering IV antibiotics. 1

© 2016 Taylor & Francis

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Figure 2. LET’S TALK ABOUT YOUR FUTURE… Figure 1. Breathe.

rowdy band of teenagers ready to rule 8 South, the CF floor at their hospital. A few days before Farrah handed off her bridal flowers, Dannie gave her a different kind of bouquet: Breathe, a word and image collage on a background of red roses that illustrates their friendship forged through cystic fibrosis (see Figure 1). The stories Dannie enlivened in her artwork are what Rawlins (2009) described as honoring “the identities of self and other, the interrelated potentials of the past, present, and future, as well as the claims of tragedy and comedy upon our lives” (p. 172). Dannie’s collage is old school: individual letters cut from magazines and newspapers and glued together to form words, phrases, and sentences that describe and interpret a friendship and a lifelong illness experience. It gives voice to elements in Farrah’s life that continually challenged her well being, both physical and mental (Bennett, Bonner, Andrew, Nandkumar, & Au, 2013; Berntsson et al., 2007; Sharf, 2009). But the collage also allowed Dannie to re-story Farrah’s experience (Harter & Buzzanell, 2007; Manoogian, Harter, & Denham, 2010). While she didn’t minimize their suffering, Dannie told a new story of Farrah’s grit and laughter, with most of the narratives framed in humor or hope. Scientists frame their narratives in discoveries and development of treatments that they report in research articles and scientific conferences. But Breathe is not a linear narrative; it is a bricolage of stories (Leví-Strauss, 1966) that are narrated through a kaleidoscopic collection of letters and pictures. As its bricoleur, Dannie cut elements from magazines and photographs and poured them onto a piece of poster board covered in American Greetings rose-decorated wrapping paper. Every letter, word, and image is connected to the one beside, above, or below it; every string has distinct meaning. The metatheme of the narrative is breathing. On the upper right hand corner is a sad cartoon cow, slung over a slivered moon, with the caption: “Nothing is ever simple.” Connected to the cow is: “Life’s so Hard . . . It’s BREATHE, BREATHE, BREATHE ALL the time!”

Figure 3. Two clubs up!

But the cow is neither the beginning nor the end of the narrative. In the upper left hand corner is “LET’S TALK ABOUT YOUR FUTURE . . . with YOUR TWO NEW lungs” (see Figure 2). On the right of the collage, just outside the border, is a green and orange toad, with its clubbed digits pointing up. “We give your performance 2 clubs up!” (CF insiders know this refers to the thickening and rounding of their fingertips, known as clubbing) (see Figure 3). On the left of the collage is the mini-narrative of Farrah’s double lung transplant in 1997. To the right is Dannie’s congratulation for a “Remarkable Recovery.” But the narrative begins and ends in the middle, with three cutout figures of female bodybuilders, a visual metaphor of the strength that Farrah and her friends developed to navigate their world (see Figure 4). The face of each of the characters in the collage is superimposed on its own bodybuilder image. With a gold medal around her neck, Farrah is in the middle, flanked by Dannie4 and Rachel. Jim, a young friend of theirs who had already

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Figure 4. Farrah wins the Gold Medal.

died, is represented by a male bodybuilder to the right, complete with the figure’s gigantic muscles and clothed in a Speedo. To the far left is the fifth image of a bodybuilder, Amy, who also had died. She is sitting on a toilet, with Tweety Bird (Farrah’s favorite cartoon character) exclaiming: “I twat I tmelt a dead putty tat!” This is another CF insider comment, referring to the digestive difficulties that people with CF have to endure. Surrounding Amy are the words, “For the love of PETE! HOW LONG BEFORE THEY DO SOME THING About This digestive system!!!” Scattered around Amy are “enzymes,” “greasy,” “diarrhea,” “hot and fudgy,” and “don’t forget to wear your mask.” Immediately below her are two cats with the words “WE want you cleaning Those litter Boxes ASAP.” It is up to us to decide whether that scene in the narrative connects to Amy’s unfortunate time on the toilet, or to Farrah’s and Dannie’s love for their cats, or to the danger of infection for transplant patients. Probably it’s all three. Breathe illustrates the climate of care that permeated this community of CF patients—Farrah, Dannie, Rachel, Jim, and Amy—which was built on the shared identities of sufferer and compatriot. Symbols of care are scattered throughout the collage. Dannie sports a cartoon nurse’s cap in one area, and in another, her face is superimposed onto a motherly figure serving warm bread. Tony, their favorite respiratory therapist, is the only professional caregiver to make an appearance. We see him with the cartoon nurse’s cap in one area and in another corner as a matador, with one rose bud in his teeth, ready to take on the “bulls” who must be temporarily vanquished to get their respiratory treatments. We also see an unaltered photograph of him holding a teddy bear, with the words, “Mommy, tell me a bedtime



story . . .” As the only outsider permitted into this community, Tony is assigned the identity of caregiver, care enforcer, and comforter. The collage as a whole and the mini-narratives within it illustrate the efforts of community members to establish a personal and community identity bounded by care. Though a sufferer herself, Dannie used her gift as a visual storyteller to care for Farrah. She did not create this artwork for public display5; rather, her purpose was to celebrate the stories that she and her friends had created. She affirmed Farrah’s identity as a strong woman (a bodybuilder) who defied the early predictions of her doctors by taking on the mantra of Rosie the Riveter—We can do it! At the same time, she affirmed Farrah’s identity as a “cystic,” a label that CF patients often use to self-identify. The climax of Farrah’s cystic narrative is her recovery from her lung transplant. But the collage illustrates other aspects of her shared CF experience and identity: difficult physical symptoms (stools that smell like a “dead putty tat,” fingers resembling a tree toad, the need to “breathe, breathe, breathe, all the time”) and resiliency that emerges in deep friendships and often dark humor. Farrah, in fact, joked during her penultimate stay in the ICU that we should all get tattoos of a fly because FLY are her initials. (Her description of her Grammy getting one was hilarious.) Harter (2009) posits that in illness narratives “the arts offer a range of media for self-discovery and expression” (p. 148). Molnar (2011, s.66) says that visual stories, with their unique power to communicate, can “change the way we see the world.” I have found that visual stories also have the power to change the way we see ourselves and those we love. Every time I interact with Breathe, I see Farrah’s world differently. I not only get another view of life with cystic fibrosis, but I can also watch and listen to the stories that Dannie and Farrah made for themselves. Breathe is not for entertainment, though many of its stories are laugh-out-loud funny. It is not for memorializing, though it evokes bittersweet memories. It is not for research, though I try to analyze its metaphors and tropes. It is not for grieving, though I am often sad when I study it. Breathe is for storytelling and story making. Ultimately, it invites us, as outsiders, to draw on what Sharf describes as our “capacity to be natural story hearers” (2009, p. 133). Breathe demands that Farrah’s story continue, and as an honorary member of her community, I will persist in writing that story, both for myself and for her.

REFERENCES Bennett, P. N., Bonner, A., Andrew, J., Nandkumar, J., & Au, C. (2013). Using images to communicate the hidden struggles of life on dialysis. Journal of Communication in Healthcare, 6, 12–21. doi:10.1179/ 1753807613Y.0000000031 Berntsson, L., Berg, M., Brydolf, M., & Hellström, A. (2007). Adolescents’ experiences of well-being when living with a long-term illness or disability. Scandinavian Journal of Caring Sciences, 21, 419–425. doi:10.1111/scs.2007.21.issue-4 Cystic Fibrosis Foundation. (2014). About 65 roses. Retrieved from http://

Dannie initially intended the collage to be a personal message to Farrah. After Farrah died, Dannie wanted it to be hung on the pulmonology floor in Pittsburgh Children’s Hospital. It stayed there for several months.

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Harter, L. M. (2009). Narratives as dialogic, contested, and aesthetic performances. Journal of Applied Communication Research, 37, 140– 150. doi:10.1080/00909880902792255 Harter, L. M., & Buzzanell, P. M. (2007). (Re)storying organizational communication theory and practice: Continuing the conversation about spirituality and work. Communication Studies, 58, 223–226. doi:10.1080/10510970701518322 Jessup, M., & Parkinson, C. (2010). “All at sea”: The experience of living with cystic fibrosis. Qualitative Health Research, 20, 352–364. doi:10.1177/1049732309354277 Leví-Strauss, C. (1966). The savage mind. (Weidenfeld and Nicholson Ltd., Trans). Chicago, IL: University of Chicago Press. (Original work published in 1962.) Littlewood, J. (2009). The history of cystic fibrosis. Retrieved from http:// Manoogian, M. M., Harter, L. M., & Denham, S. A. (2010). The storied nature of health legacies in the familial experience of type 2 diabetes. Journal of Family Communication, 10, 40–56. doi:10.1080/ 15267430903385826

Massie, J., Castellani, C., & Grody, W. W. (2014). Carrier screening for cystic fibrosis in the new era of medications that restore CFTR function. Lancet, 383, 923–925. doi:10.1016/S0140-6736(13)61092-2 Massie, J., & Delatycki, M. B. (2013). Cystic fibrosis carrier screening. Paediatric Respiratory Reviews, 14, 270–275. doi:10.1016/j. prrv.2012.12.002 Molnar, D. (2011). Narrative images: The how and why of visual storytelling [Slideshare document]. Retrieved from http://www.slideshare. net/DanielaMolnar/narrative-image-the-how-and-why-of-visualstorytelling. Rawlins, W. K. (2009). Narrative medicine and the stories of friends. Journal of Applied Communication Research, 37, 167–173. doi:10.1080/00909880902792230 Sharf, B. F. (2009). Observations from the outside in: Narratives of illness, healing, and mortality in everyday life. Journal of Applied Communication Research, 37, 132–139. doi:10.1080/ 00909880902792297


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