Cystic Fibrosis Stories: Stronger Because of their Scars
Scars are a fact of life for those suffering from Cystic Fibrosis (CF). From ports to transplants and pacemakers, most people with CF have at least one scar. Not to mention, the dark circles under their eyes from exhaustion and fatigue. Living with CF is tough; it can be draining both mentally and physically.
Luckily a few brave souls have spoken out. They are sharing their stories in hopes to encourage and empower others to do the same.
Below you will find their battles with CF and hear of their scars and battle wounds. But more than that, you will be inspired, inspired to bare your scars proudly because living with CF is not a life sentence of misery. It is your choice to be brave and bare yourself, scars and all, to those you meet.
Brad’s story
Brad said he was repulsed with his body. When he looked at himself in a mirror he saw scared skinny arms, thin as twigs, a pale torso with protruding ribs, that housed his port-a-cath and rubber feeding tube, and thinning hair. Brad is 24 years old. He is deaf and lives with CF. He is also the recipient of a double lung transplant as of January 2017.
He hated his scars and he hated that they were caused by CF. He hated that they were a constant reminder of his battle. Even though Brad lives in Hawaii, he says he rarely wears shorts and t-shirts; instead he covers his skinny limbs with jeans and a hoodie.
Brad said at the beach he would suck in his belly so that his feeding tube did not stick out as much. And he hunched his shoulders forward to hide his protruding port. Of course, he was wearing a t-shirt, as he could not be seen shirtless at the beach. And a hat always covered his brittle hair. He felt weak and ugly.
After his double lung transplant, the scars only multiplied. He has a large scar across his chest from the transplant along with two 2-inch scars from where his port was infected and removed. He has also added two 3-inch scars behind his ears from cochlear implant surgery (it turns out deafness can be caused by medications to treat chronic lung infections).
A new state of mind
But something changed in Brad after having his lung transplants. Instead of feeling weak, he felt strong. He began to develop small muscles, a sign of improved physical strength. But he was not improving only physically but mentally as well. He saw his scar collection as a sign of strength and power. He said his scars were symbols of endurance and battles won.
Brad has found beauty in the symbolism of his scars and in his body as well. He is now confident that his body has brought him this far and can only be up for the battle going forward. He says he is confident his body will take him even farther in life, regardless of his CF diagnosis.
Bailey’s story
Ms. Bailey has several scars that can be seen through her leotard. She is a dance instructor from Virginia. She has CF along with primary ciliary dyskinesia, another rare genetic disorder, that affects her lungs, ears, and fallopian tubes. The two disorders have left her deaf, gasping for air and doubled over in pain at times.
She says her scars remind her of a zombie apocalypse. Bailey cannot hide her port, stomach pacemaker, and feeding tube through her dance attire. But when she dances, she gracefully glides across the wooden floor. Her students cannot tell she is struggling with her body image, as she delicately extends her arms and points her toes.
Bailey used to do everything in her power to hide the fact that she had CF. She said dance is an art of perfection: “If I was anything less than perfect I feared I would be considered a failure.” She never mentioned her deafness while dancing to new choreography and would run to the bathroom to hide her coughing fits.
A new confidence
After years of hiding her diseases, she’s finally come to recognize that her scars and symptoms cannot hold her back. She has used dance as an outlet to forget about her diseases. Dance takes her to another place, beyond the aches and pains and beyond her body that causes her so much grief. “Something totally different takes over and you just do it,” she says.
Nowadays, she embraces her flaws and shows others they can overcome whatever limitations they face. She teaches children and adults alike. When she choreographs dances, she sits in her car with the music volume turned up to the max, so she can feel the vibrations and beats of the song.
Members of her dance studio are in awe of her endurance. They say she’s a phenomenal dancer. On the days she feels lousy, you would never know it. The fact she can do what she does is breathtaking. Fellow dancers look up to her as a dancer and as a human being.
Kassandra’s story
Kassandra remembers the day she felt ashamed of her body, after realizing she was different from everyone else her age. It was summer time, she was 13 years old and was at the community swimming pool. She was sporting a bikini but when she got out of the water everyone stared. They were looking at her marks and scars from her battle with CF. Kassandra quickly grabbed her towel to cover her body and ran into the bathroom in tears.
She said until that day she never realized how different having CF made her. She was disgusted with her body and had many questions like: Am I even normal? What are these scars? Why am I different? Being a teenager, she started to obsess over being “normal” and trying to feel beautiful. But her search for normalcy and beauty left her feeling emptier.
She had dark circles under her eyes from being tired, where models in magazines did not. She had nine scars and marks on her body, where models in magazines had beautiful flawless skin. She began to hate her entire body and herself not just her scars. When Kassandra looked in the mirror all she could see was ugly.
By the time Kassandra reached her twenties, her had disease progressed more rapidly. Facing more lung infections, she was placed on oxygen 24/7. She was housebound for almost a year and during that time nearly lost all hope in fighting her battle. She said she began to tell loved ones goodbye, in preparation to die.
Her sister was determined to help her realize she had much more to live for. She invited her on a hike to one of Kassandra’s favorite look-out spots. Kassandra thought this would be her last hike to the top and wanted to see the view one last time. When she finally reached the top, out of breath and barely able to stand, she said she began to cry as she watched the sun set.
Kassandra said at that moment, she told herself that she is a fighter and fighting is exactly what she needed to do now. She had to fight for breath at that moment, and she had to fight for life from that day forward. So, Kassandra started to push herself to new limits and make goals for herself. Her motto is to see and do things that others do not think are possible for someone with CF.
She’s pushed through her physical limitations and negative self-talk to fall in love with herself once again. With over 120 scars, her body tells a story of endurance and life. Kassandra has made a promise to herself: to put her health first, to love all of herself, to only let people into her life who love and respect her and her body, to stand up for what she believes in and to live each day to its fullest and to not hold anything back. When she starts to feel weak, she looks at her scars as a reminder of how far she’s come and remembers the promise she made herself.
No matter what scars you are facing, use these stories to inspire you to not give up. Living with CF is hard but it is not impossible. Be brave just like Brad, Bailey and Kassandra. Never give up.
References
https://cysticfibrosisnewstoday.com/2017/10/24/cf-scars-strong-broken-places/
https://www.cff.org/CF-Community-Blog/Posts/2017/How-I-Came-to-Love-My-Scars-My-Body-and-Myself/
