Skip to main content

"The Breathing Room"

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
and obstruction
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

Isa Stenzel--"Almost"

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.

Michelle Compton--"Happy"

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,
demanding blood
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.

Catherine Martinet--"Tachypnea"

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. 
Intently surviving. 


Popular posts from this blog

CF Walk Letter 2018

Dear friends and family,
I hope this letter finds you doing well! My life looks pretty different this year from last year. In May, I graduated with my master’s in communication sciences and disorders. I started working as a speech-language pathologist in June for a company called SpeechCare, and in July, Eric and I got married. That was a very busy couple months! I love my job; I work mainly with adults with intellectual and/or social disabilities to help improve their communication skills. My clients bring me so much joy! I love being able to help them communicate better with others. Eric and I are also loving being married. Living with Cystic Fibrosis has taught us to never take the time we’re given for granted, and we are making sure we soak up all the moments we’re given and go on plenty of fun adventures. 
My health has been a bit of a struggle in the past few years. I had a round of IV antibiotics in May and then again in September and January. I will be starting IVs within the ne…

The day that was yesterday

Wow. What a day yesterday was. Here’s what happened:
At around 4:45, my hand became numb and tingly. Because I’m a knowledgeable SLP, my first thought was “oh my gosh I’m having a stroke”. Although the numbness was my first (and only) symptom, it was so bizarre how my hand just all of a sudden lost feeling in it. About 5-7 minutes into the numbness sensation, it started traveling up my arm and reached about midway up my forearm. Due to my history of a PE and being on Amicar (a blood clotter) right now because of a lung bleed, pretty much the only option was to go to the ER. I called CF clinic, and they confirmed that I should head over there. The ER is the most disgusting place, especially in the middle of cold and flu season. They also apparently have never heard of CF protocol because I had to demand to be put back in a room immediately and for everyone who came in my room to be gowned, masked, and gloved. From the beginning to the end of the 5 hour ER stay, it was pretty disastrous.…

Thankful in the hard times

With a disease like cystic fibrosis, it can be easy to get lost in all the pain, fear, and frustrations and lose sight of what we have to be thankful for. This year has been rough. I started the year with a blood clot, quickly followed by increasing worry about the state of health care in America, all while losing a significant amount of lung function and dealing with way too many lung bleeds. However, no matter how hard the year, I believe it’s always important to reflect on the many blessings we have been given. It’s too easy to wallow in self-pity and pain otherwise. So this post is dedicated to just that—thanking God for all He has given me. 
I’m thankful for... My new husband ❤️. As I’ve said before, many CFers wonder if they will ever find someone who will choose to love them day in and day out with all the stresses that come with cystic fibrosis. Being the spouse of someone with CF is not for the weak or faint of heart. My husband has taken a crash course in medical terms, health…