My mom recently bought me the book, The Breathing Room. It is a collection of poems and photographs sent in by adults living with cystic fibrosis, depicting their lives, joys, and struggles. The adult realm of CF is so much different than the pediatric arena I had grown so comfortable with. As I've transitioned into this foreign territory, I've realized how much I don't know about CF, and the ton of junk many CFers live with on a daily basis. The older you get, the more hardships come your way. That makes sense; after all, CF is a progressive disease that only gets more challenging with time. Yet one of the things I like best about the CF community is that we are brutally honest with each other. We comfort each other when life feels like it hits rock bottom, but we also celebrate with each other when something amazing happens. Even though we are a small group and can never connect face to face due to infection control, I am blessed by the people with CF who share their struggles openly and honestly. They don't hide behind a mask, but they don't try to make their situation seem worse than anyone else's. CFers just tell it like it is.
Today, I'd like to dedicate my blog to some of their poems--the adults with CF who openly share their struggles, triumphs, and facts. All of the following works and more can be found at this website. I encourage you to take the time to read these artistic works and chew on them, letting the intent of the author digest into your system. Maybe one day, I'll share a creative piece of my own with you all! But for now, these wonderful poets will have to do.
James Binegar--"CF a cruel thief"
My lungs feel sick,
filled with rancid infections
channeling through my lungs
like mud as it wallows
through the trenches
that are my airways
It leaves them wrecked
and tired from the onslaught
of persistent rage
viscous obstruction and
pus, festering as it feeds
on the energy within my soul
Leaving the battle ground
war torn and filled with craters
where pockets of life once flowed
expanding with each breath
as the air of life rushed in.
I wish for emptiness
airways free of decay
instead I learn to accept
the thief that is CF
Mortar begins to set
up in my lungs
making them stiff
suffocating my tissues
my body, my soul, my mind
I feel trapped
in this prison of flesh
If I could rip CF from my body
and place it in front of me
I would see it slither and ooze
a heartless and unrelenting
demon of consumption
taking its time stealing bit by bit
immune to my defenses
I still fight on
clinging to life and hope
that one day I'll know
the beast has been slain
to breathe without labor
to live without pain
Hard to imagine now
my life without such limits
not gasping for air
my lungs without scars
breathing without a care
my hopes, my dreams
CF, is a cruel thief
I'm almost thirty-and succeeding at survival-
I'm almost perfectly confident with who I am
I almost have everything I need
I almost have complete fulfillment
I can almost run an eighth of a mile
I can almost have a fulfilling career
I can almost pass as normal
I almost qualify for the life-saving clinical trial
I am almost ready for a lung transplant in a few years
I can almost go a day without any therapy
I almost have as much energy as my aging mother
I almost met God but he wasn't ready
I almost learned to be completely true to myself
I almost have nothing to complain about
I can almost believe I am going to make it
I would almost ask for nothing more
I could almost say if I have more loss I'd be okay
I'm almost ready if the end would come
To say I've lived an almost perfect life.
how can you ask such a question of me?
does this disease leave me with feelings of pleasure?
A thousand needles have pricked my skin,
returning poison in the name of health
I've lost friends before i started high school;
said goodbye to loved ones
i met only through their legacies
and you ask if i am happy?
My body betrays me with each breath
sharp stabs to my chest
keep me from bright hopeful dreams
I make decisions you cannot bear to think of
i face ugly truths - you turn your eyes away
blinding yourself with pathetic pity.
happiness is a question asked patronizingly of children
I face my fear every day
raising my sword of defiance and determination
slaying the dragons you didn't even know were there.
I am courageous, I am strong
I have accomplished everything
and paid with my life.
I am joyous, fortunate, fearless
spiritual, solaced, content and loved
don't ask if i'm happy.
diminutive and fierce.
My breath comes as quickly
as the beating of your wings.
My hunger for sustenance
will match your voracious appetite.
My spirit wills itself
to adopt your tenacity.