How I made my commitment to CF a part of my career

Something Rotten! is one of my favorite Broadway shows. I have previously written about this musical comedy in a play called Welcome to the Renaissance: A New Beginning for CF Patients. This week I wanted to use the show to discuss a different topic: what happened when my passion became my job?

My first love was musical theater. Next, I fell in love with writing, followed by advocacy for cystic fibrosis (CF). I have never worried about losing my love of theatre, writing or advocacy. You have always fulfilled my need for a creative outlet, my desire to help others, and my purpose. However, now that I’ve combined the three into one career, I worry that I won’t like them anymore.

What’s not to like about advocacy? It’s extremely fulfilling, especially when I can use storytelling as a way to connect with others. Still, there are downsides to full transparency. I have to relive my trauma every day. I tend to tell the same stories over and over again and I get tired of my own words. Even after reminding myself that some people haven’t heard my story, my rehearsed lines lose impact and my tone lacks passion.

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All of this made me think of the song “Hard to Be the Bard” sung by the character William Shakespeare, a narcissistic storyteller who prefers fame to writing. At least that’s how he’s portrayed in the musical. Shakespeare begins the song by telling the audience about his busy schedule.

“There’s lunches and meetings and poetry readings and endless interviews”

It’s true. I want to share my story because I think it’s comforting to hear a like-minded person’s experience. There are also untruths and outdated truths in statistics, so a patient’s experience is often more trustworthy. However, to ensure my story reaches a wide audience, I need to tell it on multiple platforms.

I interview, live on social media, friends I’ve connected with via direct messages. Businesses use virtual platforms like Zoom to say hello to me after several email exchanges. I write articles and make videos. Press releases explode like unstable fireworks from my outgoing mail. In short, the public rarely comes to the lawyer. The lawyer has to go to them.

“Then it’s back to my room when I resume my attempt at writing a hit”

I enjoy reaching my audience, but that’s just one of the hats I wear. The other hat comes with a quill: a writer’s cap. I could send out a million press releases about my musical, but if there’s no script, there’s nothing to promote. Between the interviews I need time to write the columns, blogs, texts and children’s books.

“There’s only so much of me to go around”

Next comes the trick of juggling the projects. Have you ever been so involved in a project that you forgot to eat or go to the bathroom? I have. Advocacy takes time and focus, but I don’t want to do it at the expense of my health. I used to say “yes” to anyone who asked to collaborate, which in turn reduced my ability to give 100% to any project.

I can organize my time much better. I try to focus on three projects at a time instead of nine. Most importantly, I try to include my treatment schedule and rest days. It’s not an exact science, though, and I still overbook myself sometimes.

“But someone has to do it”

There are days when I say, “I need a break from social media,” but it leads to guilt. About 10% of my community has not benefited from a drug like Trikafta (Elexacaftor/Tezacaftor/Ivacaftor). Bilateral lung transplant recipients like me remain desperate for the promise of extended life, and dozens of my friends have died well before their 21st birthday. I can’t stop supplying products that could help cure cystic fibrosis.

All of this begs the question: Why am I still committed to this? In short, writing is cathartic. By temporarily neglecting the fact that writing is my profession, I benefit myself as a patient. Suddenly, truths and issues jump off the page. I enjoy having intimate conversations with new friends. I love connecting with talented artists after exploring a new children’s book concept. My passion impacts my community. Allowing it to become my nine-to-five simply required limits for the sake of perseverance.

Pursuing a creative career can be fraught with difficulties, but burnout and resentment don’t have to be inevitable. When the audience asks, “What’s it like turning your passion into a career?” I look down at my new lungs. I am reminded that there are no second chances for new lungs. More importantly, I remember how lucky I am to have her.

“It’s sexy, but it’s tough.”


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

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