Quote: "As a teenager, I had the normal insecurities and growing pains, and having a disease certainly added to them."
It's easy to get lost in the medical side of having a disease: the names of medications, the latest test results, and our therapy regimens. It can consume our minds, fall into the biggest life decisions, such as whether or not to travel or have children, and it can even sneak into the seemingly small decisions, such as whether to stay out late. Through it all, how often do we stop to think about how illness has shaped who we've become
I grew up with cystic fibrosis, a genetic disease that causes the lungs and digestive system to deteriorate. When writing about the emotional tribulations of having a lifelong illness, I've found that poetry is one of the best ways to capture truth and depth. It grasps at the inexplicable - how things have come to be - without forcing the connection to be entirely direct.
Rarely are our decisions clear-cut, cause-effect. When I was seventeen, I spontaneously ventured into the back country of Colorado for a day with my sister and, due to our inexperience, we got terribly lost. When I made that (rather irresponsible) decision, I never thought, "I have CF, and that's why I'm going to go get lost in the back woods of Colorado" (see poem below). However, when I look back, I realize how much CF was a part of my experience. It was the sound of me hiking down that mountain and listening for the highway: every crackling breath, every cough. It was the reason I needed to find some peace.
As a child, CF was something I had to learn. My parents had to teach me how to take care of myself at a young age - meanwhile, they were "improvising" as each new problem arose. For parents and patient alike, it is a learning process that can only happen through experience, no matter how much we anticipate future tribulations.
As a teenager, I had the normal insecurities and growing pains, and having a disease certainly added to them. Maturing and coming to terms with this illness has been one of the most important aspects of my life. Just as it influences the shape of my body - the scars on my skin, the way I stand, the way I breathe - it has influenced how I see people and approach life.
Below is a selected poem from a chapbook I wrote called "Shapes of Water ." The collection of poems explores coming of age with cystic fibrosis: developing relationships, yearning for independence, gaining self-understanding, dealing with loss, and coming to terms.
Winter Park, Colorado
Here it is soundproof,
snow on rafters
soft as fox paws that tiptoe
around green firs.
I keep myself
steady in this clean silence.
My body is preserved
into time-slowing moments.
Over my head
of crisscrossed branches
merge into white ground:
the sky's a blank slate to write
word clouds with my breath.
My exhales rattle,
my cough shatters icicles,
but all pain is braking:
absorbed in thick blankets,
spread thin like frost
in the high altitude.
Here I don't dread the rumble
of oncoming avalanche-
something in its cresting
beauty makes me forgive it,
and I can convince myself
nature is not trying to take me.
|1 : The Cost of Freedom & I Served My Country by Teresa Gail Carver Godin : Teresa Gail Carver Godin.|
|2 : Poetry by Iain Stephen : Iain Stephen.|
|3 : Poems: Cranky Old Man : Crabbit Old Woman : A Nurses Reply : Disabled World.|
|4 : What is The Color Of Care? : Pastor Kevin McCray.|
|5 : Hard to Escape: A Collection of Disability Poems : Alyssa D'Amico.|
|From our Disability Poetry & Poems section - Full List (24 Items)|
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