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Faces of Cystic Fibrosis, by Kyle Monk

June 18, 2014, 12:30 3517 Author: Kyle Monk co-mag.net Moments after reviewing the image I instantly knew I created something powerful, beautiful and moving

Text and photos by Kyle Monk.

Moments after reviewing the image I instantly knew I created something powerful, beautiful and moving. This particular photograph of Michael Lawrence would steer the direction of the shoot. Initially I planned to photograph each subject three different ways. First a close up portrait of each face, next a full body frame incorporating a personal item and finally a portrait with the medical equipment. After photographing Mikey with his nebulizer I made it a point to focus my time and effort photographing the children with their medical devices which consisted of nebulizers, high-frequency chest oscillation vests, inhaled bronchodilators and antibiotics.

This memorable photograph was taken of four year old Michael Lawrence, a young child affected with Cystic Fibrosis. In the image Mikey holds his fish nebulizer Bubbles and takes a breath to help his lungs breathe through the thick mucus his body forever produces. In an attempt to making breathing treatments more appealing and less threatening for the kids, there are a variety of pediatric masks – dinosaur, elephant, etc for the different nebulizers.

Nebulizers break down liquid medication into aerosol mist producing treatment which helps clear the airways. Freeing the airways of mucus is vital to maintaining good lung function. If the mucus is not removed from the lungs, these children and adults may have more infections, decreased lung function, shortness of breath, decreased activity level and more.

Within the vast darkness surrounding Mikey you see his connection with Bubbles. You get the sense he has done this countless of times before and will continue to do so just like so many others with this heart wrenching disease. During this moment the world appears to be still, but is surrounded by silence and darkness. The only sound is that of the shutter clicking as Mikey’s heart beats and hands delicately grip Bubbles. His eyes focused and in tune with the moment that I am deeply moved. I wonder what Mikey is thinking? Can he make sense of what is happening? Is he mesmerized by the endless routine of combating cystic fibrosis? I don’t know, but I can see in his eyes familiarity and innocence, and also the courage young Michael has. This was a genuine moment for me. Within a split second the truth and reality of fighting Cystic Fibrosis was in font of my eyes and I felt deeply saddened. At that exact point in time I would have done everything I could to cure Cystic Fibrosis.

Michael’s journey is harder than most but he still continues to move forward as the happy 4 year old that I know. This intimate act of survival is what I find most empowering, haunting and inspiring. Understanding the severity of Cystic Fibrosis motivated me to bring awareness, honesty and silent beauty to my photographs.

I believe that Michael, like so many other young children, cannot quite comprehend what cystic fibrosis is, nor what the future holds for their lives. They do know however, that they must engage in several breathing treatments a day to stay alive and healthy. This includes inhaled medicines, and wearing a high-frequency chest wall oscillation vest to break apart the mucous. Along with hours of treatments, vitamin supplements, therapies, doctor visits and more, it’s sad to know there is still no cure and no end to this life threatening disease. I’m saddened and happy when working with the children and their families. Knowing that these young lives are threatened by Cystic Fibrosis brings me down, yet their courageous personality, positive attitude and fighting spirit are uplifting and comforting.

I really felt a connection with these kids taking photographs that day and I believe this bond with the children and families was a key role in the success to creating these images. I had time to sit, talk, listen and see. Most importantly I tried to be aware and ready to capture those subtle honest moments. Michael’s image moved me that day and everything made sense and I felt even more passionate and inspired to continue this series.

I’m troubled and amazed with what these young kids must go through on a daily basis. As I continued the project I had also interviewed the kids and wanted to share what Mitch Russo had to say about living with CF. “I hate to do the vest! It hurts underneath my arms and I get lonely being hooked up in my room so many times per day… having CF is the worst!” says sixteen year old Mitch Russo when the doctor told him he would have to use a machine called the vest everyday for the rest of his life in order to combat cystic fibrosis. He finds having Cystic Fibrosis very challenging. Mitch tries to be a normal kid, but it’s hard when you have to plan every day around treatments, surgeries and hospital visits. “CF affects me emotionally and medically and the uncertainty of the disease makes me scared I might die,” he says.

As a kid I worried about simple and practical things like auditioning for the school play, what girl I would be square dancing with and homework. I did not have to think about my health in a very serious manner or even worse that I might die. I cannot imagine having such thoughts during my youth. Genetic diseases such as cystic fibrosis are unpredictable. Simply put, luck of the draw. It’s not fair, but that is life and working with these kids reminds me of how delicate our existence is. I was humbled and awakened when I photographed these strong spirits. I realize the importance of family, friends and loved ones even more.

My senses were heightened and my intentions became pure.

Sadly I dislike saying this but these feelings eventually fade away into the daily grind. Work, family, and life gets the most of me and I forgot about Mikey and Cystic Fibrosis for some time. I hope my images will resonate with people. I want the viewer to feel something. Emotion is the goal. If you have truly felt anything from this series then I believe I have done my job. An emotion strong enough to create conversation, ask questions, raise concerns and promote action in the fight to find a cure and improve the lives of people with CF is what I want.

Cystic Fibrosis is a rare disease, but today many people with CF are expected die before their adult years are now living much longer. In order to help extend these years and find a cure we must first bring awareness and increase funding to advance science, research and support.

I now feel part of a close community through my work with the CF Foundation and the families who volunteered to participate in my project “Faces of CF“. It is the thank yous, hopeful smiles and warm feelings of appreciation and dedication to life, and family that make it all worth it for me. I want to help these lives through my passion for photography. Working with the CF foundation has been a unique, memorable and uplifting experience. I felt a genuine purpose behind the lens, a feeling I rarely have. My vision has matured as I have too.

Please visit Kyle Monk website for more stories and photos.

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