Just Breathe: Adults living with Cystic Fibrosis is a newly released book that captures the human experience of Cystic Fibrosis through a series of simple, yet complex portraits of adults living with the disease. Readers will find themselves transfixed as each page brings a new face, challenging the readers’ preconceptions of what it looks like to carry the disease across the threshold of adolescence to adulthood.
The portrait book is a collection of photographs of adults living with CF, each paired with a short writing on the subject from his or her experience with the disease. The clean, minimal portraits highlight each subject’s expression to provide an intimate look into his or her life, as the accompanying words speak to the effects of the disease through their own experiences.
The conception and creation of the book was carried out by the portrait and fashion photographer Ian Pettigrew, himself a person with CF. His personal experience with the disease creates an unmistakable connection to those he photographs providing an increased depth and richness to the stories told in both word and picture. “With any good portrait you have to have a synergy with the subject,” Pettigrew notes, “but that is certainly much easier when you both share a fatal disease, there’s no getting around that. To this day I very much keep in contact with many of the people I photographed.”
Just Breathe is Pettigrew’s answer to bringing awareness to the changing demographic within the CF community and the unique challenges faced by adults living with the disease. The description of Just Breathe on Ian Pettigrew’s website explains that, “the goal is to raise awareness that people are living longer because of advances made in the medical community, advances through generous donations and signing your donor card… but adults are dealing with other problems as well, and this to also shed some light and understanding on the other issues adults with CF deal with.”
The book triumphs in depicting CF and those who live with it as it is found in a complex, intermingling of life. A book focussed on the experience of CF may quickly flounder in characterizing the person and patient as a one dimensional character, darkly shaded in sadness and a life that “could have been.” However, anyone who lives with the disease or knows someone with it understands that the experience is rooted not only in sadness but also in joy, not only in fear but also in hope and excitement.
Each portrait provides a glimpse into this complex and often conflicting suite of emotions. Next to one photograph the subject, Joshua, writes, “what was trying to kill me hadn’t. But it had affected me. Marriage became divorce, work had become professionalism, histrionics had become activism, and through the miracle of parenthood my invincibility was no longer mine alone to forge.” In the next couple pages the story shifts as Gretchen reveals her new joy in that “now I wake up to fight for this little boy who deserves to have an amazing life, and an amazing mother.”
I cannot praise the work of Ian Pettigrew enough. It is rare, and I cannot think of another time, when we, as a CF community, can promote the cause of CF awareness by experiencing such a beautiful and intimate connection to those affected by the disease. I love t-shirts as much as the next person, but I would urge you to join Pettigrew by purchasing his book as he strays from the conventional to promote the cause of cystic fibrosis in its raw beauty.
To learn more about the book, as well as to make a purchase, visit Ian Pettigrew’s website found here.
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