Cystic fibrosis stories: the time when my invisible illness became visible

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Cystic fibrosis stories: a green-tinted photo of a young Black woman looking down in reflection, pondering a problem.

Lisa Zaccaria sheds light on what it's like to live with Cystic fibrosis, a chronic illness, and how her dreams are cut short because of its complications. 

Cystic fibrosis stories: the time when my invisible illness became visible

At twenty-one, I got a role in my local theater company's musical production of You're a Good Man, Charlie Brown. Perfectly cast, I was going to play the tiny yellow bird Woodstock, Snoopy's best friend. 


The director told me I would perform a musical number with the actor who played Snoopy. The musical number would involve acrobatic tricks. I didn't even know how to do a somersault or cartwheel. My friends joked about my athleticism and wondered if they needed to bring a wheelchair or crutches on opening night. 


I didn't care that I was probably the most unathletic person alive. I longed to be on stage. I've already been in several plays and musicals. I felt at home on the stage.


The adrenaline rush flowed through my body before I stepped on the stage and transcended into someone else. The euphoric feeling at curtain call made me feel alive as I bowed and the audience cheered.    The night before rehearsal, I decided to go to bed early. I closed my eyes and lay on my soft, fluffy lavender pillow. And then I coughed. One cough led to another until I was in a full-blown coughing attack. Finally, I sat up, and my chest felt like it was on fire. 


"No! Don't even think about it," I said to my lungs.


Phlegm built up in my throat. With one forceful huff cough, I grabbed a tissue on my night table and spat the mucus into it. I looked at the tissue….blood. Blood! The night before the first day of rehearsals! I sighed with frustration and threw my tissue box across the room. I leaned against my headboard, overwhelmed with the unruliness and ugliness of Cystic Fibrosis.


The red stain on the tissue meant I had an infection in my lungs and more progressive lung damage. I coughed up two tablespoons of blood and a blood clot the size of half a penny. I knew what was going to happen because I had done it before.


I called my Cystic Fibrosis doctor and told him about my hemoptysis, the medical term for coughing up blood. He told me to come to the emergency room, but I already knew I would be admitted.


I packed a few bags and texted the director. I told him I would be in the hospital for two weeks. I informed him that I was a quick learner and would catch up with the cast when I returned. Surprisingly, he was very understanding.

If it weren't for Cystic Fibrosis that would be me

Two weeks later, I returned to rehearsal. The director took me aside and told me he recast my role as Woodstock, but he wanted me in the production, so he named me the stage manager. He didn't even give me a chance to prove what a quick learner I was. 


I wouldn't let the cast see how devastated I was. I smiled, laughed, and joked with everyone but was screaming inside. Finally, at home, I slammed the door to my room and sat at the edge of my bed while I called my grandmother. As soon as she said hello, I couldn't hold the tears in any longer.


On opening night, I watched the show from the audience. "That was supposed to be me," I thought. If it weren't for Cystic Fibrosis, I would be on that stage. But instead, my invisible disease became visible and prevented me from doing what I loved to do. My health started to interfere with daily living as I was hospitalized every four months. I wondered what I was supposed to do with my life now that my disease was progressing.

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Article by
Lisa Zaccaria

Lisa Zaccaria is 44 years old and has cystic fibrosis. Diagnosed at four months old, doctors predicted she wouldn't live beyond elementary school. Lisa not only defies the odds, but she also creates them. Also, diagnosed with diabetes, kidney disease, osteoarthritis, and thyroid cancer, her life has been anything but easy.

Caption:

"I wouldn't let the cast see how devastated I was. I smiled, laughed, and joked with everyone but was screaming inside." | Photo: Marco/Adobe Stock

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