My Cystic Fibrosis Journey: 1987-1988

This was a big year.

At the end of the summer before my Junior Year of high school, I came across a newspaper ad for a new professional theater’s Young Professionals Program. Admission was by audition only. I nervously applied and auditioned. It was  a huge commitment. Surely, the plays and musicals I had done up until then had required major commitment, but this was a year-long program. I had to maintain not only my grades, but most importantly, my health.

I had enjoyed several years of stable health. I still had frequent respiratory infections, and constant tummy problems, but they were part of my norm. As the year progressed, however, I would learn that uncertainty would become my new norm, as it had been for my parents so many years earlier when I was first diagnosed with Cystic Fibrosis. In addition, my older twin sisters had left for college, leaving a huge hole in the house and in my life. I was now the “oldest” at home, with my younger brother starting high school that same year. Lots of changes ahead!

When You Wish Upon a Star

I desired one thing – to become an Actress. By the fall of 1987, I’d sang in school/church choirs for years, and performed in a dozen shows, including four full-length musicals. I possessed the experience and the drive to join this program, but did I have the talent? Did I have the resources?

Earning a spot in this theater program required not only my own time and energy, but money, time and energy for my mom to drive me back and forth. I auditioned, and joined the first class of Young Professionals Program at The Music Theater of Connecticut. I studied Voice, Acting and Dance under the tutelage of professional instructions with several lifetimes’ worth of experience in the business. I went to classes every Wednesday after school, and had weekly “homework” to prepare for the following week.

As part of our training, we also had the exciting opportunity to join the cast in the first musical of the season, an original adaptation of the story of Ebenezer Scrooge. Rehearsals began about six weeks before opening night, which mean that my mother would have to pick me up from school and drive to and from rehearsal several days each week, including weekends.

Sweet Sixteen, Interrupted

As opening night drew closer, rehearsals grew longer and more frequent. Thanksgiving weekend came around – which also happened to be my sixteenth birthday  – my Sweet Sixteen, and I had scheduled my party for that following Saturday night. What I didn’t know what that my mother and my friends – about 20 of them – had planned a surprise birthday party at a place where they did hay rides and bonfires. Apparently, after seeing the rehearsal schedule for that Friday – which required us to attend from 11 am to 9 pm – my mother asked my director if I could get out little early.

Yes, my shirt said "16". I had a unique fashion style.

Yes, my shirt said “16”. I had a unique fashion style.

Looking back, I understand why he refused – it was a professional theater, after all, but my mom and friends had planned this party for weeks, all the while letting me think that the party I planned for that Saturday was the real thing.

Student by Day, Aspiring Actress by Night and Weekend

I didn’t find out about the grand plans until that day, in the morning when my mother dropped me off. I was pretty bummed, but the experience in a professional show was a huge step on the path to my dream. I wanted to be on Broadway, on television, and in film. This program gave me access to talent agents in New York City and lots of opportunities in “the biz.” It was potentially my “big break.”

I had my birthday party on Saturday, after a full day of rehearsal, and it was a blast. I continued rehearsing for the show, which opened in the first week of December. We had five performances a weekend – Thursday, Friday, Saturday night, and Saturday and Sunday matinees, for three weeks. That meant two shows on Saturday.

Cast photo from MTC's "Ebenezer."

Cast photo from MTC’s “Ebenezer.”

It was a lot of work. I tried to not miss anything. Sometime during the show, I got sick. The entire cast ended up sick, so badly that the lead actor ended up in the hospital. After the show ended, I was relieved to have a break from the intensity of the show.

However, I had to keep doing well in school, and I chose to continue to be active in my church Youth Group, having new experiences like ice skating and skiing. My best friend and I also joined the national organization Youth Ending Hunger, dedicated to bringing teenagers together to learn, educate, brainstorm solutions, and campaign for international changes in hunger assistance policies. We held fundraisers, participated in weekly conference calls, and attended conferences at both Yale University and the United Nations in New York City.

My best friend Patty and me at our Junior Cotillion.

My best friend Patty and me at our Junior Cotillion.

I also had my very first boyfriend, with whom I went to my Junior Cotillion. My mom and I shopped for the perfect dress, and we planned a post-event slumber party at my house for all of the girls in our group of friends. I couldn’t believe it. I was old enough to date (16!), went to my first formal dance at the local country club, and finally got to take my driver’s education classes. This once frail little girl was growing up and branching out.

The Highest You Go, the Further You Fall

From a broader perspective, my head and my mind were in a better place. I had friends, I was rewarded for my talents, and I had a lot going on. Again, the rule was that my health and grades came first, and then I could do the other stuff.

When we turned the calendar to 1988, however, life came to a halt. A slow, tedious, halt.

In early February, I had begged my parents to let me go skiing with the Youth Group. I did everything right, working with a ski instructor and successfully making it down several beginner mountains, but at the end of the day, I had a bad fall. The tip of my right ski got stuck in an icy bump, while the rest of my body twisted. I felt the twist in my leg, but otherwise, didn’t feel much else. The ski patrol showed up, belted me into a toboggan, and skied me down the mountain. I remember as they swooshed me into the First Aid building, a friend yelled out to me, “her mother’s gonna kill her!”

I recall my friend Kevin and his dad carrying me to the bus. During the bus ride home, the kids piled their coats on me to keep me warm – for some reason, I couldn’t warm up. Long story short, I ended  up tearing my right ACL (Anterior Cruciate Ligament). When I got off the bus, my dad was there to pick me up, which was odd. Normally, my mom did that sort of thing. I remember the look on his face, and I feared the consequences. I had begged them to let me do this, and here I was, in the very situation that my parents feared would happen. However, it wasn’t just my accident that made my dad so upset.

“They found your cousin’s plane.”

My cousin, Terry Lynn, and her fiancé, who both lived in Florida with their baby daughter at the time, had taken a recreational ride in their friend’s small plane. Her parents hadn’t heard from her the day before, the family began to worry. My aunt and uncle had flown down to Florida to get the baby and held out for hope. That next day, rescuers notified the family that the plane had crashed, and that they had recovered both the plane and the pilot’s body, but not her or her fiancé.

Rescuers determined that there was no way that she would have survived the crash, so my aunt and uncle held a memorial a few weeks later. How do you say “good-bye” when there’s no one there to say “good-bye” to? It was rough. My mother was Terry Lynn’s Godmother, and at nine years my senior, she was one of our favorite cousins who spent a lot of time with us when we were younger.

Moving Along, Slowly

Life went on, and I was on crutches for a few weeks. It was odd to need the doctor for something not CF-related. It turns out it was kind of CF-related.  I found out that the ski accident wasn’t my fault – I had a condition known as Quadriceps Insufficiency, which meant that my quadricep muscles never developed fully. It could have happened due to the frequency of antibiotics I’d taken for respiratory infections, and I had it in both legs. He said that it was likely to have an injury in my left leg at some point at well. We decided to put off reconstructive surgery on my right leg until because it was a long recovery that would have taken me out of school for a while, and I would be in rehabilitation therapy for at least six months.

Initial recovery from the injury took a while. Thankfully, my school did have an elevator, so I was able to go from one floor to another and get to my classes. I got to pick “lucky” friends to carry my books and escort me to and from class, and we got to leave class early to get to the next one. Of course, we took our time. I couldn’t exactly rush on crutches, right? 😉

Socially, I was dealing with the breakup of my very first relationship. I had a whole lot of pain – my torn-up leg, the loss of my cousin, and my first broken heart.

Regardless, I had more than enough stuff to keep me busy. I had several meetings in NYC with potential talent agents,  I was in music rehearsals for my parts in the school’s Festival of the Arts, and I continued to attend my professional theater classes, albeit sitting on the sidelines during dance class.

April came along, and a friend from my Youth Group asked me to go to his senior prom. While I had attended my Junior Cotillion earlier in the year, this was a senior prom, at the boys’ prep school. I had so much fun, especially because my best friend was also going as the date of another one of our friends.

We went to the beach the next day, but the day ended rather early for various reasons. I went to bed before the sun went down, and I felt so terribly that Monday morning, that I slept through my alarm. I didn’t wake up until 11am. That had never happened before. I felt like I had been run over by a truck, and didn’t know why.

The Downward Spiral

The whirlwind of activity and excitement of everything going on began to wear on me. I had begun having coughing attacks that were very hard to control. I tried a combination of cough drops, sipping water, cough syrup my mother gave me, and did everything possible to avoid talking, moving around a lot, or anything that aggravated it. The problem is that I had a lot of singing and moving around to do, as I was performing in my school’s art festival, as well as planning a Musical Theater showcase for my professional theater program. Both of those events required singing, dancing, and acting over multiple nights.

Tuesday and Wednesday were just as miserable, but I dragged myself to school on Wednesday and my Voice, Acting and Dance lessons that afternoon. The next day, Thursday, was opening night for the school art festival, and in order to appear in the show that night, I had to go to school that day. Aside from my cough, I was really tired – more tired than I had ever been in my life. I coughed all night. I coughed in school. The coughing attacks got worse, and the more I tried to suppress them, the more inflamed my lungs felt. It was like they were on fire. It got so bad that I had to run out of the auditorium during a school assembly to get some air.

It took about 20 minutes to get myself under control, but as soon as I got home from school, I fell asleep. I had to be back at school at 6pm for the show, and by that time, I just felt like a zombie. I still performed the first night, but had to discreetly leave stage due to a coughing attack during one song, and began to lose my voice in my trio.

Reality Bites – Hard

That night at home, I tossed and turned in bed, knowing that this wasn’t getting any better. In the morning, I found myself unable to stop coughing and had no energy. It was a tough decision emotionally, but logically, there was no other choice. I ended up staying home from school that day, and dropping out of the show.

In addition, I had to drop out of my final month of theater classes, as well as the upcoming talent showcase. I recall the disappointment in my director’s voice when I told him. Sure, I had been sick off and on, but this was something completely different from anything they had ever seen.

At that point, I stopped going to school. My doctor diagnosed me with Tracheitis, an inflammation of the Trachea caused by the bacteria Staph Auereus, a bacteria that we now know is very common in Cystic Fibrosis patients and something that I’ve carried in my lungs since I was very little. I was sick for months, but at the time, the doctor was unsure of the trigger. I had stopped going to school in April and never really finished my junior year of high school. I missed the final 40 days of school. My teachers sent work home for me, and my friends would bring in my assignments. Most of the teachers were very helpful and sympathetic to my cause – I was coughing constantly and it was hard to concentrate, read, or even write, due to the constant physical movement of coughing.

My friend Kristine visting me one day after school while I was home with Tracheitis. Those are animal crackers we are eating.

My friend Kristine visting me one day after school while I was home with Tracheitis. Those are animal crackers we are eating.

The cough was so severe and persistent that my doctors tried many medications – tranquilizers, anti-nausea drugs, and even antipsychotics. Nothing helped. In fact, one of the medications gave me a terrible side effect known as Dystonia, which caused the muscles in my neck to severely constrict, causing my head to bob up and down uncontrollably. The only treatment was Benadryl and time, so I spent about six hours with my mother and father trying to stabilize the upper half of my body and my head, to try to control the muscle contractions.

My bout of Tracheitis left me about 15 pounds lighter, cost me nearly four months of time, and forced me to take all sorts of medications that most 16 year-olds would never take. My doctor finally found a drug combination to help calm the cough somewhat, but it made me really sleepy; another thing that made doing my school work difficult.

All of my teachers except for one let me do my final exams as either take home tests or special projects. One teacher – my Trigonometry instructor – made me come into school on day at the end of the day to take my test in front of her. I had to run to the water fountain every few minutes, during which she insisted she accompany me so that she ensured I wasn’t trying to cheat. I don’t know how I actually passed that class anyway, because learning complex mathematical theories is difficult enough while attending class, but I had to do it on my own. I was really scared that I would have to repeat some of the classes and even my Junior Year, but I survived and scored well enough in my classes to maintain my place in the honors program.

Another casualty of the Tracheitis is that after two consecutive summers of performing in youth theater, I couldn’t join the cast of that particular summer’s show. I didn’t know what to do with my evenings, because for the past two summers, I spent every M-TH evening at rehearsal for 3-4 hours. I suddenly had nothing scheduled, and felt pretty lost.

Hope Through Friendship and Faith

Thankfully, my friends kept in touch with me, and as I began to recover, I slowly got out of the house. We attended concerts on the town green, went to the beach, sunned ourselves by the pool, went to the amusement park, and still had Youth Group and church. It was truly wonderful to have friends who also had the same faith and level of church involvement as I did, because it bonded us in a very deep way.

A banner mounted on the wall at the Emmaus retreat - an example of my fiends' and my ongoing commiment to our faith.

A banner mounted on the wall at the Emmaus retreat – an example of our ongoing commitment to our faith and the bonds we shared.

I even met a boy that summer, which I thought would never happen now that people knew how sick I could get. I met him through a friend of a Youth Group friend, so I knew he was a good, Catholic boy.

As summer ended, I was crawling back into “normal” life – at least, one with a few less crises. Although, I now had new knowledge of what my Cystic Fibrosis could do. It was my first severe lung experience since I was a year old – and a doozy at that. Once again, lessons learned and I could only keep moving forward.

My Senior Year was next and I was determined to graduate. I worked too hard to not walk across that stage.

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