My Cystic Fibrosis Journey: 1985-1987

I initially intended to take a break today, but was up very early, so here goes… Day 10 of my Cystic Fibrosis Journey for Cystic Fibrosis Awareness Month

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I entered High School in September of 1985.

The first two years of high school were exciting and scary all at once. Although I had two older sisters who went before me, that “inside knowledge” meant little when you knew less than a handful of people who planned to attend my high school. Most of the students from my elementary school who went to Catholic High Schools lived in towns where other high schools existed. My family moved from the city when we attending church and school to another town right before seventh grade, so I chose to go to the school closest to home.

Everything new – People, Classes, Challenges, Opportunities 

Our school had a rotating schedule – seven courses with six class periods a day, and the fourth period was known as “long period,” during which all students attended one of four lunch periods, based on class location.

Placed in the Honors program in my private Catholic school, during each of my freshman and sophomore years, I had a combination of five academic courses: Math, Science (Freshman), History (Sophomore), English, and Latin (only for Honors students). In addition, everyone had to take two years of Language (I took Spanish I and II), and another period was split into Religion 2 days a week and Gym class twice a week, and the final period was divided into Study Skills, study hall, and an elective of either Art of Choir (I chose Choir).

It was tough learning the ropes. I had never taken a school bus (my mom drove us to school K-8), used a locker, or had to change classes that could take me from the third floor on one end of the school building to the first floor on the opposite end. I had to figure out how to get my books and make the trek from class to class in three minutes or less.

Changing Classes

Given that we only had three minutes to change classes (and visiting our lockers or the restroom), I had to figure out how to get to classes far from each other and up and down two flights of stairs without getting out of breath, how to manage my restroom needs, and getting to and from the school nurse’s office to take my digestive enzymes before lunch and get to the cafeteria in time to buy my lunch, find a seat, and eat. With only 22 minutes to get to the cafeteria, eat, and get back to class, I often didn’t get to eat all of my lunch, so I had to hide snacks in my locker to make up for lost calories. Although I was now in the normal height and weight range, I tended to lose weight quickly and easily when sick.

Out Sick

When I was out sick – usually for 2-4 days at a time, I had to figure out how to not only make up the work I had missed, but also learn the material that others learned in class during lectures, and get a copy of the notes. It took me a while to make friends.

As only 4 kids from my elementary school attending the same high school as I did – in a freshman class of 234, I wasn’t friends with them, and none of them were in any of my classes. I had to find someone in each of my classes who not only seemed nice enough to help me out, but someone who took good notes, who would be willing to share what when on in class, and get the information to me quickly enough for me to work on it all.

Making Friends

Taking honors courses for all academic classes (science, math, history, etc.), I was with 20-30 of the same 60 kids for five of my classes each year. I was nervous because everyone seemed to know everyone else, and here I was, some weird girl with no known history, a bad haircut, and awkward in just about every way possible, who coughed a lot, which seemed to unnerve people from the start. However, I finally yet slowly began making friends, and by the middle of my freshman year, I had started talking to a girl, P., who was not only in my home room, but also in four of my classes, plus she sang in the choir with me as well.

Making My Own Way in My Faith

P. and I became friends, and slowly started to get close to several other girls in our classes. She also she introduced me to a lot of people, including a group of kids in her church’s youth group. Although she lived in a different town, I joined the youth group and the church. The youth group and my friends in it became my primary social circle. It was the first time in my life that I belonged to a group of friends. Interestingly, many of the guys in our youth group attended the all-boys prep Jesuit school in another town, while most of the girls in the group attended my co-ed school.

At youth group, we attended church together each Sunday and served “Coffee and Doughnuts” afterwards, held monthly dances, went on adventures like ski trips and amusement parks, and held fundraisers for charity. During my sophomore year, I went on a weekend religious retreat known as Emmaus – and it was one of the single most influential experience of my life.

We also spent a lot of time at one another’s houses, had slumber parties, went to the movies and the mall – basically all the stuff that normal teenagers did. I told my friends that I had Cystic Fibrosis, but for the first time in my life, it was just part of me, like the fact that I had brown hair or I liked show tunes. it wasn’t the only thing people knew about me.

Sophomore year, my 15th birthday slumber party!

Sophomore year, my 15th birthday slumber party! I am bottom right in red.

They did what any friends would do – let me know if I had broccoli in my teeth, pass a note to a boy I liked, stay up late watching movies. They would also save a seat at me at lunch, knowing that it took me time to go get my enzymes at the nurse’s office beforehand. They knew how to clap on my back when I had a coughing attack, which happened when I laughed – and we laughed a lot. Since at least one of them was in most of my classes, I always had someone to share notes or get assignments when I was absent from school. We’d get on the phone after school (and after homework) and chat for hours.

Activities

High school opened up a world of new experiences. I joined the Drama Club, auditioned for, and performed in, every one of the productions during my four years there, which led me to audition for the town’s summer youth theater program, despite never having taken any dance or voice lesson. I begged my mother to let me study dance at a local dance school, just to learn the basics of the dance work I had done in my high school musical. I also sang in the school Choir, rehearsals which took place during a class that I was able to take in place of study hall, all four years.

"The King and I". From the audience perspective, I am in blue (I played a twin) on the right of Anna.

“The King and I”. From the audience perspective, I am in blue (I played a twin) on the right of Anna.

I am positive that my theater and choir experiences helped me stay healthy. Singing daily helped me keep my lungs clearer, and even though I sometimes coughed through rehearsals, learning to control my breathing only helped. The dancing and physical rigors of rehearsals for musicals kept me active. The summer theater program I joined rehearsed four nights a week for eight weeks, along with 2 weekends of performances. That’s a lot of dancing, as I was in every major musical/dance number in every show in which I performed.

But On the Inside…

Like everyone at that age, I had been through a period of growth on many levels, and while I had so many positive experiences, I held constant battles with my self-identity. As life began opening up, I also began to understand all of the fears my parents and family experienced all those years. I’m sure that in many people’s eyes, the longer I lived, the more uncertain life became.

As much as I fought to move forward, and as much as my parents had to learn to “let go,” my Cystic Fibrosis was still there, constantly trying to pull me back. I found it more difficult to hide my symptoms. I spent a lot of time during those fun slumber parties worrying about nighttime gas or how to gracefully use the bathroom at someone else’s home (I had frequent bowel movements which were quite odorous). In school, I tried to hold in my stomach issues while also trying to concentrate on the teacher’s lectures. I coughed during class, choir practice, show rehearsals, and church. I kept an endless supply of cough drops in my purse, and tried to choke down coughing attacks (which only made it worse). I had many moments of horror when I coughed and lost control of my gas, in a firestorm of noise and odor.

During the first two years of high school, I had a lot of emotional issues to deal with. Through my faith, the strictness of my parents, and the positive influences of my friends, I didn’t have much opportunity rebel in the ways that many teenagers did. I didn’t drink, wasn’t promiscuous, and never tried drugs. I guess I knew that my body had enough to contend with; adding all of those potential risks didn’t make any sense to me.

Life was about to get a lot more complicated – in good ways and in bad ways. But life isn’t easy, for anyone, right?

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