It's discouraging, truly, to feel that my more concentrated treatment efforts are met only with declining health. Having recently been focusing on medicinal compliance, hints of improvement have been on my mind. But now, even with my hard work, my chest feels tight.
The air in my throat cracks and bubbles.
My quickened breath is audible in any room.
I am tired.
Even as I finish that last sentence, my fingertips abandon the keyboard and travel to my lips. I am forced to physically catch my own disease, my body rejecting the mucus that invisibly drowns it.
I'll let you in on a little secret, though.
This doesn't completely suck.
No, no. Feeling crappy isn't always bad, especially for professional patients. You see, despite the fact that no one should be defined by singular objects, ailments, or significant others, to a certain extent, we are. We all are. We all have a thing.
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You know that coworker who burps to herself every few minutes, problematically imagining that no one can smell it? How about that guy in lecture who lazily scrolls ESPN every Tuesday and Thursday? Well, they too are whole. Just like us, they have families and fears and favorites. Though we know them by stoic, unchanging names, they too are utterly whole.To us, they are to "Belch Girl" and "Rugby Boy." To others, I am "Cough Kid."
For those of us blessed with seventh chromosomal mutations, this alias - while occasionally suffocating - is familiar. Pleasantly familiar. We've been the Cough Kids of the world since we first cleared our collective throat (most likely at 3-seconds-old). It's not the most glamorous nickname, but it fits. Cystic fibrosis is our ancient, fading, spit-soaked baby blanket.
So yeah, we hate getting sick. We chastise our decaying bodies for what they cannot do, but beneath salty skin and clubbing fingers, we rejoice: we are still alive. Our bones, while prone to premature osteoporosis, are still made of stars. Though we may not often admit it (because, hello, it sounds crazy), sickness remains an old friend. By nature, souls crave companions.
I am a CFer.
We are CFers.
And yes, we also dance, drum, write, snack, adventure, sing, and pursue the perfect winged eyeliner. These are pieces of our humanity, and calling attention to our disease does not discount our pieces. Accepting cystic fibrosis does not discount our pieces. Wearing proverbial stickers that read "Hello, my name is Cough Kid" does not discount our wholeness, and anyone who says otherwise is threatened by the raw confidence we have harvested since diagnosis.
I am sick.
We are sick.
And these aching, brittle, star-filled ribs define us in an incredible way.
Love,
Cough Kid #70,001
To those who know you or have met you, you are an inspiration and the "Amazing Kid." So many look up to you and what you have accomplished despite yours struggles, my granddaughter Sidnie included. You don't let CF define you...you are a CF'er but so much more and to others who also struggle, you give hope for living a full, joyful life because of the example you set. What a role model you are to others, young lady...so much more than the "Cough Kid"...:) Judy Shimunek
ReplyDeleteHannah your positive outlook on life is so refreshing, even to those of us who are clinically healthy. But honestly we are all sick, some mentally, some emotionally, some physically but we all have some kind of hurdle to jump. The important thing is that we try to jump the hurdle, if we get over its a bonus but even if we don’t, there is something positive that can be taken from the effort. Keep fighting the fight and continue to be positive because others are watching . Your freind in respiratory.
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