The Role of Cystic Fibrosis in my Life

Ella Balasa

[su_boxbox title=”About”]Ella Balasa is a person with cystic fibrosis. She is a writer, a patient advocate, and a scientist. She received her education from Virginia Commonwealth University in 2014 and has worked as an environmental microbiology lab manager. She is involved in the cystic fibrosis community through being a director of the US Adult CF Association, serving on various research committees, including the CF Foundation Infection Research Steering Committee and as co-chair for the inaugural CF virtual research conference, ResearchCon. She has been named the 2019 CF Ambassador for the Virginia CF Foundation Chapter. When she is not taking care of her health, she enjoys spending time with friends and writing her column “This Lung Life” on CF News Today. She can be reached via LinkedIn (https://www.linkedin.com/in/ella-balasa/) or by email: [email protected][/su_boxbox]

[su_boxnote note_color=”#c8c8c8″]Key points

• Having cystic fibrosis has had a significant effect on the person I have become.
• In what ways cystic fibrosis has shaped my identity.
• Life lessons from having a chronic life limiting illness.[/su_boxnote]

[dropcap]I[/dropcap]’ve said it many times. I wouldn’t be who I am without cystic fibrosis. But I also view CF as just one aspect of my identity. Albeit a relatively large one, it’s the part of me that has, over the years, made me increasingly indifferent to what others around me are thinking when I do breathing treatments or IV antibiotics in public. It’s the part of me that’s responsible for creating abs of steel – the result of endless coughing day in and day out. It’s the part that has made me resilient to sudden changes in travel plans when I develop a collapsed lung, for instance. CF has forced me to acquiesce to the unknown circumstances of my future: when I may need a transplant and how long I may have with new lungs. When asked to describe myself, I don’t jump to these pieces of my life that are fundamentally a result of having CF. But as I examine the cornerstones of my physical and inner self, I realize how CF has molded the characteristics that define me and the ways I have contributed to this world.

Ella Balasa

Lately, when first asked to describe myself to others in conversation, I say that I am a writer. Writing has become one of my strongest passions, but I often get writers block. Those familiar with it understand the sense of forced work when the inspiration doesn’t flow and it’s difficult to compose. Even now, as I write directly about myself, I try to pique the reader’s interest on this topic through story without getting too biographical; yet, I genuinely seek to express my raw feelings and ideas. It’s always challenging, daunting, but the reward of feeling being understood through words is liberating, fulfilling, and worth it at the end. That’s why I do it.

Had it not been for the set of circumstances in my life that were defined by CF, I don’t think I would have ever found writing. After graduating from college, I landed by first “big girl” dream job and then turned it down. My health had reached a stage where I knew that I could not sustain a full-time position. I didn’t want to talk about it with friends. How could they understand? The symptoms of my progressive illness had robbed me of a career that I wanted so badly to grow and keep up with my peers, but instead I had to face the reality that my days would be increasingly dominated by and scheduled around hours of breathing treatments and airway clearance – not staff meetings and laboratory tests. When there was no one to turn to, I put pen to paper and wrote for the first about this major experience. Right then and there, writing became my outlet, in this case for frustration about my situation, and has remained my outlet for ideas and feelings that I am not ready to share with the world in any other form.

At the time of my college graduation and employment realizations, I was just beginning adulthood and didn’t have much experience, but I have since come to recognize the phrase and idea, “when one door closes another one opens.” My paths have led me to so much bounty.

Since embracing writing just a few years ago, I have blossomed in my relationship with myself and now completely value my worth and place in this world. I have gained confidence in my skills as a writer. My research background and drive to utilize all avenues to improve my health outcomes led me to emerging clinical treatments that I sought out and tried, and then on those experiences. I have developed many personal and professional connections with others in the CF community that increasingly provide me opportunities for growth and learning. I have taken on a role as a patient advocate in the broader CF community and now even beyond it into areas like antimicrobial resistance, phage therapy, drug development policy, and patient engagement in research. I have contributed to research committees, organized and led research events and spoken at conferences, and facilitated new connections amongst the research and medical professionals I’ve interacted with.

CF life is filled with sudden health changes and with that comes emotional upheaval. I’ve learned to roll with the punches as they say.

So now, another way I also describe myself is as a volunteer. Although I have developed professionally along my path, my experiences are almost all unpaid. With my education and work experience in microbiology research, I have and continue to describe myself as a scientist in certain contexts, but the majority of my recent work involving research has been by way of volunteer positions. I feel somewhat dishonest in claiming to be a full-fledged scientist. Is that an insecurity stemming from my more numerous roles as a patient expert than as a scientific expert? I’m not sure it’s something that I should explore further. Nonetheless, these volunteer experiences have brought much fulfillment and purpose to my life, and I wouldn’t have had any reason to pursue them without the fuel that my own disease provides.

CF has also made me a pragmatic person, from the way I approach the pursuit of clinical treatments and trials and the attitude with which I solve insurance debacles, to the way I deal with emotional challenges and daily tribulations. CF life is filled with sudden health changes and with that comes emotional upheaval. I’ve learned to roll with the punches as they say. When faced with the onset of an exacerbation, the consequences of missing a trip due to a round of IV antibiotics, or even an unusual pain in my chest I’ve never felt before – I’ve trained myself to dissipate the stress and anxiety that wells up inside. Now, I apply this skill in life circumstances that are independent of CF. I channel the energy from my anxiety to find solutions. And when there is no apparent solution, I occupy my mind with things that bring me joy or a sense of accomplishment.

Last summer, the combination of some unfortunate circumstances with my passport, flight delays, and terrible airline customer services led me to miss 5 days of a long-planned 3 week to Europe. I spent more hours than I care to share on the phone with the airline and even the embassies involved, but was unable to make it all work out in my favor. Sure, I was bummed to say the least to miss a special event with my whole family in Hungary, but there was no point in stressing after I had tried everything I could to be there. I relaxed with a nice dinner that night.

Aside from that travel mishap, that summer was one of my best. My exercise regimen was better than ever, and I was feeling great. That progress though was not enough to save me from a serious respiratory virus and pulmonary exacerbation that came that winter. I was very ill, spitting thick green mucus for weeks and on constant supplemental oxygen. The IV antibiotics had stopped working, after many weeks of this with no end in sight. A few months earlier, I had first learned of phage therapy, and decided there was no time like the present to contact researchers. Shortly thereafter, I began the process of obtaining this experimental therapy for myself. It was time to try something new and fast to combat the unbeatable infection that plagued me. I communicated with doctors and researchers to obtain it in just a few short weeks. This new therapy was relatively uncharted waters, and I was so absolutely terrified of what could go wrong but I needed a solution to the immense problem I was facing. And the treatment worked – days later I was clearing the respiratory infection that bacteriophages had decimated.

It’s in the more significant of life’s moments that my realistic perspectives and expectations can be observed, but I strive daily to “keep things in perspective.” Like everyone, I have room for improvement, but I try not to sweat the small stuff and to make the most of the time and talents I am blessed with despite the hurdles and difficult times. CF is my greatest of blessings but it’s also my most awful curse. With it, I bear the hardship of health battles for a shortened lifespan; but without it, I wouldn’t have this path through which I’ve already learned many life lessons that some take a lifetime of their own battles to figure out.

CS Media Lab

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