May is Cystic Fibrosis Awareness Month!
I have written a lot about CF in general on this blog, as well as our own journey with CF. Because May is CF Awareness Month, I thought I would write about something new and something that, if I'm honest, scares me: Adulthood CF.
CF use to be classified as a childhood disease. "Childhood disease" means exactly what it says: the disease affects children. However, for CF, it didn't mean that adults couldn't get CF. The term meant that the disease only affected children because those children never made it into adulthood. A CF diagnosis use to mean a death sentence for babies and young children. Luckily, with help from the Cystic Fibrosis Foundation, medical advancements have improved treatment for CF patients exponentially and there is a growing population of adults living with CF.
I have shared before that I am very reluctant to read others' stories about their own journey with CF. I want to live out our own story, and not in fear of the road someone else has traveled. After Crosby's diagnosis, I quickly realized that I could live in a paralyzed state of fear about what could happen because of what I read and heard, or I could live in the moment and not miss the life and blessings minute by minute that I have been given. I wrote about my struggle with that
here.
I have been following one girl's journey as an adult living with CF and have permission to share a bit of her story. Caleigh is 24 years old and has been battling Cystic Fibrosis her entire life. She is beautiful inside and out and so, so brave. Her words are very inspiring and before CF took over her life a couple of years ago and she became too sick to work, she was a chef in San Francisco.
Caleigh now has end-stage lung disease due to the ravages CF has had on her body. Her lung function has severely declined and she is currently awaiting new lungs and is on the double lung transplant list. She spends her days literally fighting to breathe. Caleigh's love for life, family and her fight to win the CF battle inspire me. You can visit her website at
www.fight2breathe.org. She recently described on Instagram what it is like when you can't breathe. In Caleigh's words:
The feeling of panic is shattering. Panic illustrates that what you thought you had control of you no longer do. However the act of breathing is simple. Most of our society inhales and exhales as second nature, without even thinking twice; taking 28,800 breaths per day. It's muscle memory and more so it's survival instinct. Still, battling end-stage lung disease can cause even our survival instincts to turn off at our weakest and most vulnerable moments; like while sleeping. Sleep by definition is to be dormant, careless, and inactive. Like a hermit crab curled up inside of its own shell for shelter and rest. It puts us in a defenseless state. As we close our eyes, the muscles in our back slowly release the tension we carry throughout the day, our stresses disappear into the walls which surround us and our bodies turn to cuddle into comfortable positions embraced by fluffy pillows and warm sheets. Yesterday as I laid in bed just about to fall asleep; my body completely weightless. I laid on my side. One foot on top of the other, one leg on top of the next, and my right lung directly over my left. But just as my body transitioned into total relaxation it's as if so did my respiratory system. As if my internal switch was turned off. The oxygen pulled out of me. My ribs and lungs transformed into shallow, slow breaths I was unable to regain for minutes. My first impulse was to reassure myself I was awake and alive then slowly get up to retrieve my emergency inhaler but as time continued the physical feeling of my lungs unable to expand grew frightening. I became embodied with emotions that I must at all costs remain calm, in control and always breathing. My heart-rate quickened, my ears began buzzing and my headache increased, all telling signs of lack of oxygen to the brain. I could feel my anxiety. My thoughts, like a detective, racing... what did I do wrong?, what had I done previously to put myself at risk?, and why are my breaths slow instead of quick if I can't gain O2?... why isn't my body responding? At last, my only hope to sit and repeat to myself "I am alive", "I am ok", "I can breathe". Now "breathe", "in, out, in out".... fight2breathe
Caleigh is committed to fighting for her life. Every dollar donated to the Cystic Fibrosis Foundation helps all CFers in their fight against this disease. The Foundation has resources for adults like Caleigh and supports kiddos like Crosby.
Join us on May 16th for the CF Foundation's Great Strides Walk in Little Rock. You can donate or register by clicking
here. We all probably take our ability to breathe for granted. Donate to support those who are fighting just to breathe.
Love,
Carmen
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