‘Dust and Ashes’: Feeling Like a Burden Kept Me From Being Transparent

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by Nicole Kohr |

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My biggest fear as a child was being a burden to friends and family due to my cystic fibrosis (CF). I spent my life avoiding this label by being overly cooperative and tolerant. In short, I was the kid you didn’t have to worry about. Ironically, everyone should have worried about me the most.

I didn’t want parents of friends to think twice about their meal plans when they invited me over, at least, no more than any other dinner guest. I didn’t want my theater directors to assign me less responsibility or physical demands. The same went for work colleagues, classmates, college roommates, and the families of people I dated. I always pulled my weight … until I didn’t.

CF has left me with many scars and holes over the years, but the internal damage caused by my own guilt cut deeper. Years of masking also resulted in exhaustion and resentment — mostly toward myself. I wasn’t even allowed to feel resentment toward others because I wasn’t transparent with them. How were they to know that I wasn’t allowed to play in the dirt due to a fear of Pseudomonas, or lie flat on my back all night due to increased acid reflux?

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Little miscommunications like these — or better yet, anti-communications — turned into bigger, more complex problems. My relationships lacked infection prevention, proper nutrition and diet plans, recent updates to my treatment plan, timely medication, hydration, and more. But I’d grown accustomed to it. As long as I wasn’t a burden, I was willing to damage my body … until I wasn’t.

In adulthood, I’ve had to cope with the fact that I’m a burden. I can hear the voices of my mother and my husband echoing in my ear, “You’re not a burden!” Well, I feel like I am. The silver lining, however, is that my transparency has resulted in two things that I didn’t have in my youth: trust and endurance.

I didn’t realize it until later in life, but while I was fulfilling my need to be cooperative, I became untrustworthy. A short walk on the beach would inevitably result in me fainting. However, when the question “Are you OK?” rang in my ear, atop the actual ringing in my ears, I would answer, “I’m fine.” Then, I’d faint. I wouldn’t trust me after that, would you? No wonder Mom followed me around like I was a luckless Mr. Magoo.

Being really vocal about how I’m feeling and what I need has resulted in zero falls and faints. Turns out, yelling “I’m going down!” is preferred over just going down.

Endurance has been the second blessing of my pro-burden lifestyle. Before, my endurance chart looked like a roller coaster. I’d ride that theoretical roller coaster to the top of my energy level. Then, an infection would hit, and I’d crash to the bottom. I’d get antibiotics, then repeat. My plan worked back then because my lungs weren’t as damaged. I bounced back faster, but it likely led to my rapid decline a decade later.

My present-day endurance has me walking on sunshine, or rather, a steady walkway with orthopedic sneakers. My roller coaster has become very straight and boring in comparison. Nothing is completely unexpected, bumps are managed, and my health is stable.

I’d become so used to someone unconsciously walking by my side, waiting for me to fall. I’ve found a new appreciation for walking independently, way behind the others. They don’t even look back anymore to check on me. It’s like they trust that I can walk the same distance they can, and that I’ll scream if I’m going down.

Dust and Ashes” is my favorite song from “Natasha, Pierre & the Great Comet of 1812,” a musical adaption of the famous novel “War and Peace.” In it, Pierre — played by Josh Groban on Broadway — spends the show searching for the meaning of life. I believe he finds it in this song, especially after reflecting on a near-death experience.

“Dust and Ashes” reminds me of the argument I had with myself immediately before my lung transplant surgery. The fight was between me and the abusive and wavering voice that lived in my head when I was a child and told me I was a burden.

Yes, certain medical emergencies traumatized me into transparency. That’s not to say that transparency is bad, but my journey from masking to transparency was fast and outside of my control. I made the decision to end the mental self-abuse and relieve my family’s anxiety through change and action. I blamed myself for the trauma and scarring for a while before realizing that, regardless of the blame, things had to change moving forward. Now all of those memories of dinner at my friends’ houses resemble dust and ashes.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.


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