How Rascal Flatts' Music Helps Me Cope With My Rare Lung Disease
Dear Rascal Flatts,
The song “Stand” and the lyrics “You feel like a candle in a hurricane, just like a picture in a broken frame, alone and helpless, like you’ve lost your fight, but you’ll be all right, you’ll be all right,” is just one example of how your musical group composed a verse that almost anyone can relate to. It is undoubtedly challenging to keep my inner light illuminated when I feel like my body is defenseless, unreliable, and broken. The broken frame is my lungs. My lungs have decided to form holes and bone tissue, due to dendritic pulmonary ossification. My “frame” (lungs) may be broken, but my overall picture (my personality, my spunk, and my witty self) is not broken. I joke that the calcification process going on in my lungs could happen where I actually need calcium, like in my bones and teeth. My crackled breathing is audible to the point where I think I could be apart of a Rice Krispies commercial. When the slogan comes on, I can “crackle” in “Snap, Crackle, Pop, Rice Krispies.” I have also graciously accepted the nickname “Wheezy” from my neighbor, as exercise brings out the wheezes. Just because one aspect of myself is not up to par, does not mean the rest of myself has to be weighed down.
I try my best to not get bogged down by the medical terminology. I try to leave behind the doctor talk at the doctor’s office, but sometimes I find it in the rearview window, trailing me on my way home. I am also a pioneer and guinea pig for those who may have this disease in the future. There is nothing more intimidating and knee-wobbling to find out there are not any profound cases that can shed a light on my rare diagnosis. I wish I could find the words to muster up the helplessness I feel when I’m reminded of the lack of funding or the lack of effective treatment for my lung disease, but words don’t justify it. I also know what it’s like to want to give up because tests and scans are coming back abnormal. Symptoms have rooted themselves in my daily schedule, and doctors don’t have simply answers to give to me. My routine in the morning is definitely different than the past. It is now comprised of inhalers, prednisone, and nebulizer treatments.
I have walked the halls of hospitals at nightfall to distance myself from feeling like I’ve lost my fight. I have asked for the curtains and shades to pulled up at midnight so I could see the city lights and riverside view from my room. I may not be in control of the course of my lung disease, but I am in control of what type of beauty I surround myself with. City lights and a wedge of river out my hospital window may not seem like much at all to some, but it is a reminder of life outside the hospital. If you haven’t looked outside a window at midnight with lights mirroring off the water, then I suggest you find a friend and take a trip to do so. A window may just be a frame with a piece of glass, but it is a window to a picture that is ever-changing with the seasons. I may be a rare and weird unicorn in the medical journals, as one of my doctors once told me, but I’ll be looking for the day when my symptoms become a minor detail of the day, instead of the main idea. And that is when I will be completely all right.
Angie, a rare lung disease warrior and Rascal Flatts fan
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