My Cystic Fibrosis Journey – 1988-1989

Let me just say that I never realized how difficult it would be to write about my life. We all have things in our lives that we’d rather not remember, or publicize, and with each year that I write about, I am reliving all of the major events I’ve experienced, good and bad. That’s a lot to do in a month’s time, and this month isn’t even half over. However, I do so because I committed to putting the words, “Cystic Fibrosis” on people’s tongues, even if it’s a lot of work. I know that nobody asked me to do this, but I feel that doing so will help someone, in some way or another. So back to our regularly scheduled blog post…

My Cystic Fibrosis Journey – 1988-1989

After a year of more ups and downs than a roller coaster, I finally reached my Senior Year of high school. With the memory of being sick for four months fresh in my mind, I realized that sooner or later, my Cystic Fibrosis was going to call the shots. It wasn’t necessarily that I had new fears, it’s that I had a new understanding of how quickly my health can change. Still, I was so, so lucky. Many kids with CF spend months each year in the hospital,  and somehow, so far, I had been able to avoid contracting the multi-resistant strains of bacteria that is associated with lung damage and health decline. I also had a unique ability to “bounce back”. I had been able to avoid severe scarring from my respiratory infections so far. I got sick frequently, and could get really sick for weeks at a time, but, I’d bounce back in between. It earned me a nickname with one of my doctors – “the Enigma”.

When God Closes a Door…

After my health forced me to quit my theater classes and my roles in two different shows in the spring, I resolved that I was only going to take on one major experience at a time. I learned that I can’t put a dozen things on my shoulders and expect that my CF wasn’t going to catch up with me.

  • I gave up my outside musical theater instruction.
  • I ended my work with the international organization Youth Ending Hunger.
  • I had missed the chance to attend the Emmaus retreat during Junior Year due to illness.
  • My Tracheitis damaged my vocal chords, so my singing voice wasn’t as clear as it used to be, and I’d essentially have to “start over” with a Vocal Coach if I wanted to continue to sing on stage.
  • My ski accident left me with a leg injury that would require surgery and nine months of recovery, so I kept myself out of activities that could cause further damage.

…He Opens a Window

Performing – Singing, Dancing, Acting 

I lost a lot, but those experiences brought me to a place where I could focus and succeed at the things I did do. I continued to sing in my school choir. Rehearsing during one class period each day gave me back some of the joy I got to explerience while singing, and it also helped strengthen my voice so that I could continue singing in some capacity. I contimnued to particopate in the Drama Club, and performed in my school’s annual spring musical. This year, we planned to do the one musical I had most wanted to work on – The Sound of Music. I so wanted to be one of the children, especially Leisl, the oldest Von Trapp daughter. I auditioned, went to call-backs, and finally, one day after school, the director posted the cast list.

The cast list from our performance of a musical that I had wanted to do since I was a little kid - The Sound of Music!

The cast list from our performance of a musical that I had wanted to do since I was a little kid – The Sound of Music!

I didn’t get the role that I most wanted – it was between another girl and me, but I enjoyed my role as Louisa, the “bratty” one. Music rehearsals, during which we rehearsed the songs, were always the best part of my day. The songs I knew by heart from years of watching “The Sound of Music” on television every year were so much more fun to sing, especially now that I was actually one of the Von Trapp Children! It was a joyful experience. From the moment I first auditioned, to the final scene of the final performance, I had constant goosebumps.

Sometimes the View Changes out that Window

I had been experiencing problems with my eyesight. I had worn glasses for 6 years due to nearsightedness, but I had to see a specialist because I had weak eye muscles. I began to notice a problem during these reshearsals. The time between scenes of live stage theater are called “black outs” – the time during which the stage crew changes the stage from one set to another. That meant as soon as the lights went out, the actors on stage had to exit, making sure they weren’t in the way of hte stage crew. I didn’t wear my glasses during performance, but I wore them during rehearsal. However wearing them didn’t prevent my prolem – i ws losing my sense of depth perception, and on the way off stage, I walked into an iron bench. It become more and more difficult to get on and off stage in the dark, to the point that I had to hold somone’s hand to get to my place on stage. This problem could aslolead to future pronblems should I keep performiing in the theater.

Faith, Hope, Charity

I found so many opporunities to continue giving, growing, and learning more about the world around me. I had spent many years in bubble after bubble, and I was ready to meet new people, do new things, learn more about how I can help my fellow human being.

  • I remained active in our church Youth Group, serving coffee and donuts after Mass and holding dances each month.
  • I volunteered monthly at the local soup kitchen, with several classmates, during our lunch and midday “long period.”
  • I remained volunteering for the Cystic Fibrosis Foundation Bike-a-Thon fundraiser each year, from 14 years old until 22 years old.
  • Alumni Club – my friends and I joined the school Alumni Club, which was a group of Seniors who worked with the Alumni Relations Office to keep Alumni involved. Two of the main events the Alumni Club held:
      • “Alumni Phone-a-thon,” during which we called every alumnus and alumna to donate to our school’s scholarship fund. My friend and I were randomly given the list of alumni who graduated in 1971, and we were shocked to find out that an actor who we loved had gone to our school, and here we had this phone number!! We played paper/rock/scissors to see which one of us had to make the call. I was too scared to do it, so I think we did it togeether. I remembe hearing his answering machioine, “Hi this is Kevin…” We got so excited that his answering machine said “Kevin” and then we thought, um, that’s his name, what else would he put on there?? Since he didn’t answer, we had to put him in the call-back pile, so I don’t know who actually got to speak with him.
      • “Breakfast with Santa” – held on a Saturday in December. Alumni parents could bring their children to for a pancake breakfast with Santa. We got to put on Elf costumes and help at the event.
One of Santa's Elves, Christmas 1988. I am third from the left.

One of Santa’s Elves, Christmas 1988. I am third from the left.

  •  I was chosen as one of four Seniors to co-chair my high schools’ annual (and only) fundraiser, the Walkathon – a huge honor and responsibility. The work I did gave me experience in leadership, budgeting, logistics, time management, and resource management.
  • I volunteered for the Senior Prom Committee, which gave me more experience in planning and decorating for events.
  • I went on my second Emmaus retreat, this time as a “team member.” Team members help lead new Emmaus candidates through the weekened. Jobs varied from holding trust excerises, giving speeches, helping cook and serve meals, writing letters to each candidate to welcome them to the retreat and to encourage them to open their eyes, ears, and mind to every experience.
Playing the "Ha Ha Game" at Emmaus.

Playing the “Ha Ha Game” at Emmaus.

We played a lot of ice-breaker games to get everyone to interact and feel included, including one called “Ha Ha”. Each person lays on their back, while the next lays down and puts her head on the first person’s belly. With each new participant, we each had to say “Ha”, in order of how we laid down. We had to go through the entire line, each saying “Ha,” without busting out laughing. It was hard, because when you feel the person above or below you, laughing, it’s hard not to laugh yourself.

Life’s Passion

My favorite high school teacher, Mrs. Green, taught honors English to both Sophomores and Seniors. I was lucky enough to be in her class both years. It was there that I developed my passion to write – a love second only to Acting. I had been writing poetry and short stories since I was in the sixth grade, so much that classmates sometimes asked me for help with assignments and proofreading essays and even term papers. Writing became only the second thing that inspired me, and a required a process that I actually enjoyed. Little did I know what kind of role that this skill and hobby would play in my future.

The Next Big Step

Applying for college was fun, but scary. It was also frustrating. My parents insisted that I go to school in-state – in case I got sick and they had to get to me quickly, which severely limited my choices. They also didn’t want me going to the big state university because they thought it would be too big for me. I wanted to major in Theater , so that created one very short list. I applied to three private schools, and got wait-listed to my number one choice. The second rejected me, and the third offered me early admission. I decided to take the early admission offer, because I didn’t know when – or if – the school that wait-listed me was ever going to reconsider my application. Once accepted, deposits paid, and I planned my entry into college, I knew that a had more than the typical number of obstacles to a life in Theater, and began looking at some other options in terms of what I wanted to study. With so many challenges to sing, dance, and appear on stage during black out, I needed something else in case I really could not contunue that journey. As the school year ended, I contacted my college-to-be and added Creative Writing as a minor. I didn’t know then how much this choice would influence the rest of my life. We’d just have to wait to find out.

The Final Step out of High School and into My Future

Now I had left was to go to Prom, take final exams, and Graduate! Prom was a blast. We had a pre-prom event at my house, and we would have post-prom events at my best friend, Patty’s house. Because my mom knew Patty and her paretns so well, it was the only way that I would have been allowed to go anywhere after prom. After decorating at the country club all day, we raced home to put on our prom gowns, do our hair, and get gussied up. We arranged a limo to pick us up for the bash at Patty’s house, so my boyfriend picked me up at my house and we drove over there. After the prom, we went back to Patty’s house, ate – a lot!, and got ready to go to the beach to watch the sunrise. Incredible night, capped off watching the incredible wonder that is dawn. Growing up so close to the beach was amazing. We spent so much time there tanning, playing in the surf, reading, having picnics, and watching fireworks every Fourth of July. We raced through our final exams. Depending on our schedules, if a senior didn’t have an exam first period, they didn’t have to arrive at school until the secon exam perod of the day. My friends and I spent a lot of our morning time at the local ice cream shop. What better way to prepare for the final high school exams than to eat ice cream, giggle with the girls, and oh, yeah, quiz each other on Spanish verbs or which author wrote this famous quote.

Graduation Day

It was a beautiful, sunny day. It had rained the day before, nearlyy squashing hopes that teh football field would dry up in time but it did, and we lined up in 87-degree heat. It was hot under those robes, especially because the girls all wore dressy dresses underneath. The ceremony went by quickly, thanks to the alphabet. My friend Kristine, of “Animal Cracker fame” from last post, sat next to me because her last name came after mine. in fact, we spent to the first two years of high school IN the same home room with the same next-door lockers, and spent all of my four years sitting in front of her in half of my classes.

A group of friends at Graduation.

A group of friends at Graduation.

And as soon as it had begun, my early days in Kindergarten, the trials of learning to manage growing up and having Cystic Fibrosis at the same time – it’s really an oxymoron – my childhood was over. I still wasn’t 18 yet (wouldn’t be until the middle of my frieshman year of college), but I had been through every life experience required to reach this point in life. Life was about to get a lot more complicated, but I looked forward to getting out of my little town, being a bit further away from strict parents who carried a lot of fear about my health, and entering a huge world that I really didn’t understand yet. I wanted adventure – and that’s what I got!

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