My Cystic Fibrosis Journey: 1984-1985

Eighth Grade. What an accomplishment! Not only were we headed to high school soon, but I, Toni Marie, the girl who everyone feared would never live long enough to reach this milestone, was still here. And she showed no signs of going anywhere soon, except forward.

This was the year that everything that could happen, did happen. I purposely didn’t expound upon serious bullying that had gone on throughout my childhood, because I didn’t want it to steal focus from sharing my successes during the earlier days of my journey with Cystic Fibrosis.

Academics

Looking back, I am so happy that my parents sent us to Catholic school. Although it was a sacrifice to do so – tuition for four kids, for 13 years each surely added up – our school challenged us academically. At home, school was priority #1, so we did homework immediately after getting home, usually encouraged by a fresh batch of chocolate chip cookies or my mother’s famous Black Magic Cake.

Thanks to our parents’ expectations, the level of discipline and encouragement of our teachers and administrators, my siblings and I became very self-motivated to not only earn good grades, but to learn, and to love the experience of learning.

Honor Society. Somehow, despite missing a lot of school, I was able to maintain grades good enough to earn the distinction of membership into the Pax Christi Honor Society. I compared myself to my sisters in just about everything, and achieving those goals increased my self-confidence.

My honor society pin, with my Eighth Grade autograph book.

My honor society pin, with my Eighth Grade autograph book.

Science Award. At 8th grade graduation, I won the Science Award for my studies and achievements in learning in our school’s after-hours elective Computer Science class for the past two years.

Acceptance into Catholic High School. To get into any of the local Catholic high schools, we had to take entrance exams. I scored 91 on my exam, which qualified me for the school honors program.

The big miracle was reaching this point in life. I’m sure that many people didn’t expect me to live this long. I’m sure it’s becoming redundant to say so, but the statistics were grim. In 1980s, the median life expectancy was the mid-teens. I’m sure that when I was younger, graduating the Eighth Grade and entering High School was not even on the horizon.

Physical

Still only twelve years old when I began eighth grade, I was slowly building confidence that I could be something other than “the weird sick girl,” I headed into my final year of elementary school with new eyes. I dared to have ambition, dreams and goals.

One thing I really wanted to do was join the Cheerleading Squad.

Cue eye rolling; I was a stereotype. I wanted to be one of those girls who jumped, clapped, cheered, and engage the crowd during basketball games. To reach that point, I had to overcome a series of obstacles.

  1. I had to ask my parents. Most of my life, fear surrounded doing anything that required physical activity and/or that took me out of the “safe” bubble of home and school. To my surprise, they both said yes, but with the stipulation that my health and grades came first.
  2.  I had to try out. I was so nervous. I spent weeks practicing the cheers I already knew by heart from attending basketball games and school pep rallies. I was still small, and rather uncoordinated, but somehow, I cheered loud enough and kept my legs straight when landing a cart-wheel and a round-off. There wasn’t anything else I could do now, but wait.
  3. Announcements. The next day, I could think of little else. The names of the members of the squad would be announced at the end of the school day, during the “daily announcements.” Finally, the intercom box on the wall buzzed. It was time.”We’d like to announce the members of the cheerleading squad, please hold all clapping until the end of announcements.”The first names they read were the captain and co-captain, which I pretty much expected anyway. Then they began to read the rest of the names. As in any Hollywood movie, it always comes down to the very last name.No. I didn’t get it. There’s no way. My cartwheels stink. My cheers were lame. I’m too ugly. They will worry that I’ll get sick. Don’t cry, they’ll laugh at you.And, like many Hollywood endings, and unlike many things in my life thus far, it was happily ever after. I heard my name called.

    What???

    I started crying anyway. Suddenly, the song “We are the Champions” started playing in my head, and I missed hearing the name of the three alternates on the squad. The cheerleading coach happened to be my homeroom teacher, and when I looked around the class to find her, I saw her clapping and smiling, looking right back at me. Moments later, the bell rang, and everyone started getting ready to leave. I sat at my desk, still shocked. Three of my classmates who also made the squad came up to me and congratulated me. You know the term, “frenemies”? Well that’s what we were. I aspired to be like these girls – outgoing, confident, athletic, popular. And now, I was a cheerleader, too.

  4. Actually doing it. The entire experience was a series of ups and downs, but for the most part, it was up, up UP. This was the first time that I had achieved something basedonmyphysical ability. The job of a cheerleader wasmostlyphysical. It required projecting one’s voice, clapping and stamping in time, lots of jumping and flipping, and doing everything with accuracy and in unison. We had  to support and lift others in pyramids, so I had to “be enough” to earn a place on the squad. We had to “spot” each other while learning new moves. It took a lot of work to become a cohesive group, as the foundation of any cheerleading squad is trust. We had to trust each other, and that was really hard for me. An inevitable camaraderie emerged among the squad.
    Yep, that's me!

    Yep, that’s me!

    I grew stronger. We practiced 2-3 days per week after school, and cheered at the boys’ basketball games on Sundays. We cheered throughout the game on the sidelines, doing lots of vocal cheers as well as “mini” routines whenever someone scored a basket, and performed our big routine during half-time. For the first time, my body was doing something positive and productive. I developed stamina, muscle strength, and the ability to learn, remember, and execute our cheer routines. I didn’t have the straightest cartwheels, and I wasn’t on the top of the pyramid, but I was as important as every other member of the squad.

    Growing those muscles helped me achieve something else – for the first time in my life, I earned a spot in the “normal” section on my doctor’s growth charts. I hit five feet and 100 pounds halfway through that school year. I no longer had to drink high-calorie shakes. I no longer had to hear my doctors encourage me to eat whenever possible. I was… normal?

    Doing so much physical activity made me cough – a lot. But that was good, because I was finally learning to recognize the beginnings of feeling sick and figuring out how to deal with my different types of coughs. I had the confidence to tell my coach that I needed to made sure that I had access to the water fountain as needed, and I feel like she respected me for coming forward like that. Until then, I used to hide everything related to my CF.

It may sound cliché, but joining the cheerleading squad became more than being popular, getting to wear the cute uniform, or getting the special privilege of wearing colored shoe laces in our school uniform saddle shoes. So, so much more. Cystic Fibrosis did not get in the way this time. It tried, but it didn’t overpower me.

And some other stuff

I also got to do a lot of other things that put me on the path of becoming someone. A real person, worthy of notice, not to be put on the sidelines where I watched everyone else play, or put up on a shelf so that I don’t break.

I got to join the school Safety Patrol, a group of eighth graders responsible for guiding the 500 students on their way out of school and off school property at the end of the school day.

I joined the school Yearbook staff, staying after school and sometimes working through lunch and recess to get the job done.

I volunteered at the local convalescent home, visiting the residents, serving them snacks, and singing for them.

I was interested in doing Magic and my parents had given me a Magic set for my birthday the year before. A boy in my class – the son of one of my mom’s friends – was very much into magic, and one day while talking about it, we came up with the idea of doing a Magic Show for the lower grades. We asked our teachers, and then the principal, who gave us permission. We practiced during several recess periods, and on the chosen day, we went to the both the Morning and the Afternoon kindergarten classes, as well as each of the two classes in the first grade and second grade – 6 performances in all. It was exciting to plan something and execute it all on our own. I remember that my young cousin was in one of the second grade classes and when we finished the performance, he stood on his chair and yelled out, “that’s my cousin!”

Image that, somebody was proud to be connected to me!

The Beginning of Me

Overall, I went from the equivalent of a single piece of paper to a chapter book, with a Table of Contents and Index. I was more than the target of class jokes. I was still a “goody two shoes” and “teacher’s pet,” but I was also known as someone to talk to when you needed a friend, the go-to person for help in writing poems for English class, and the first to volunteer for everything. People learned that they could count on me, that I had talents and interests.

Who would I become? For the first time in my life, I actually believed that I could be someone. And that’s all that mattered.

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