My Cystic Fibrosis Journey: 1978-1979


The Good

Going from Second to Third Grade was a big step.

Not only did the 3-6th grade classes live on the second floor of the school building, but we were no longer “babies”. Instead of sending two kids to bring a note to the Principal’s office, the teacher only sent one. Beginning in third grade, we got to go outside to clap erasers clean of chalk dust. We also became old enough to sing in the Children’s Choir, performing monthly at church.

I remember the first time I heard about the choir. As far back as I can remember, I only wanted to be an actress when I grew up. That included dancing and singing, or as is known in Musical Theatre – “the triple threat”. Singing, dancing, acting – these all appealed to me in a way so visceral, so intense, that no other life path would matter. The chance to sing was a gift that I could not refuse.

So when the chance to sing on a regular basis came along, I begged my parents to let me join the choir. I could only do it if my sisters did – which, thank God, they did – so a few days a week after school, we assembled in the chapel to rehearse for our monthly Mass. It was joyous. It was fun. I was the only 3rd grader in the group, so I was the “baby” of the group. But I didn’t care. They accepted me, and gave me a chance to sing.

The simple act of joining the choir, and getting to sing at the front of the church, was enough to make me feel like my existence finally made some sense in the world.

The Bad

That year, I also had my first public asthma attack. I got upset at something, and my teacher disapproved of “emotional outbursts” in the quest for “self control”. The more she scolded me, the harder it was for me to stop crying, and within moments, I began to hyperventilate, and went in the opposite direction – I couldn’t exhale. It was scary. It was something I’d never experienced before, and the first time I was conscious of the sensation of not being able to breathe, though I didn’t understand it.

My teacher sent me to the restroom to “collect myself” and I sat on the floor with my head between my knees, breathing in and out as slowly as possible, trying to get back to a normal rhythm of breathing, occasionally getting sips of water. Unbeknownst to me, I had innately figured out how to handle an asthma attack without medication. When I got back to the classroom, the teacher asked me if I “was done with (my) little display” and told me to sit down. I vividly remember a few of the kids in my class, mocking my wheezing, then saying “I can’t breathe, I can’t breathe” and mock-chocking each other.

The Reality

Some day… I thought, some day… I would know what to do or say. Until then, I took it. I was different, and they were just letting me know that they knew.What else could I do?



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