My Cystic Fibrosis Journey 1989-1992

College. What a loaded word. Depending on who you are, it brings up so many different images to your mind.

Crowded dorm-room parties. Students studying on the grass in between classes. Sitting in large lecture halls with 150 classmates.

I began college in the fall of 1989. It was my first time away longer than a few days. Aside from a 4-day high school field trip to Washington, D.C. in my sophomore year, I had only been away for a few weekends for church retreats, and always with tons of people I knew, and lots of chaperones.

I spent most of my life in a series of bubbles. Understandably, my parents wanted to do everything possible to prevent me from getting seriously ill, or worse. We like to think that everything is controllable, but the previous year’s experiences proved otherwise. As a result, I was about to experience so many new things that it nearly made my head explode.

When my mother dropped me off at my dorm, and I said good-bye to her and my high school boyfriend (who helped me move in) for the last time (we broke up a week later), I was, for the first time, on my own.

New Experiences

Time, Class, and Life Management

First, I had to organize my class schedule, get to class each day, manage my time to get all of my homework done, get to meals on time because the cafeteria only opened at mealtime. Thankfully, the amount of schoolwork I had done in high school prepared me for the volume and intensity of college lectures and homework. I had developed strong study skills and made frequent use of the campus library.

One challenge was getting the right classes at the right times. Many classes had prerequisites, which meant that I had to take Class 101 in order to take Class 201. Students essentially had to plan out their entire college career based on when the classes were offered, because some were offered only in one particular semester or the other.

Over time, I realized that I had be realistic about my chosen major. I loved my theater classes, but after the first year, I realized more and more that theater was not going to go well with my Cystic Fibrosis. I switched my major to Englsih/Creative Writing, and it was like everything made sense. I florished in those classes.  I felt challenged. I was so excited to write essays and papers that I’d start new projects right away. I also earned a reputation for my editing skills, and a few extra bucks for editing/proofreading/typing papers. There were a lot of wealthy kids at school and they would pay nearly anything to help them get their papers pretty and error-free.

I also had to carefully budget my expenses – I had hundreds of dollars of books to buy each semester, a phone bill each month, and a very limited amount of “mad money”. I got a job on campus at the Student Center information/candy booth. It was centrally located in the building and on campus. I only made $4.25 an hour, but I saw everything. It was also an easy job, and I could get a lot of homework done in between requests for information or candy.

During sophormore year, I put my writing and organizational skills to work and ended up as Managing Editor of the school yearbook. I learned how to use the professional camera, wrote lots of articles and captions, used my first computer (my brother had an old Apple 2E growing up, but I only played games on it) and worked closely with the publishing company to get the book done on time. It was a great learning experience, and a chance to get my writing “out there”.

Roommates

For the first time in my life, I had to live with a stranger, and I was petrified.

I had to be upfront about my Cystic Fibrosis, which also scared me. I often had bad experiences notifying people.

I remember telling my roommate and she became very upset that the school didn’t notify her. She had to deal with some of the more unpleasant effects of my health issues, such as gas, coughing at night, frequent bathroom visits that required me unlocking the door, opening it and letting in the hall lights, closing the door, returning, opening the door again, and finally closing and locking it up again. I tried my best to be quick and quiet, but it wasn’t always easy. As always, there were times I was sick with a respiratory infection and coughed a lot – sometimes all night. One night was particularly bad. Nothing I did helped quiet that lung tickle. As I’m laying there, trying to make it stop and try to fall asleep, a girl several doors down from me screamed “SHUT THE F*CK UP!”

I get it. It was irritating. I irritated me. But there was nothing I could do about it. I get sick every 4-8 weeks and it can last a few days to a few weeks.

I ended up changing roommates the following semester, and again the third semester. I just wasn’t made to live with other people, and during my second semester sophomore year, I ended up in a “single” room.

Fitting In

What or how to tell other people was difficult, but trying to fit in was even worse.

After 12 years of wearing school uniforms, for the first time in my life, I had to pick out what to wear each day. I remember the first day of classes, staring into my closet, not knowing what to do. It sounds funny, but the only time i had to dress myself was in the summer – which was just about always shorts and a t-short, or for weekends/holidays – during which I always wore dressier outfits. I’d even wear a skirt and a sweater on my dates in high school, because that’s what I was used to wearing. I think that during high school, I had maybe two pairs of jeans. Now, away at school, I had to figure out “daily” clothing. Nobody dressed up for class. In fact, it was common to wear sweatpants or leggings  with huge sweatshirts.

They're back!

They’re back!

Living with strict Catholic parents, I didn’t go to parties and had only been around alcohol a handful of times. I didn’t know how to handle myself when put in sketchy situations. What do I do at a party? What if someone was doing something I didn’t like? How do I say “no” without insulting people? Did it matter if my “non” insulted someone? Did it make that person a “bad person” because they said “yes” to something? It was all very confusing. I had to learn to make my own decisions not because my parents wanted me to do or not do something, but because it fit or didn’t fit into how I wanted to live my life. Did I make mistakes? Of course. I made a lot of mistakes. It’s how we learn. I just made them a bit later than most of my peers.

I also had to make decisions and deal with consequences that could potentially affect my health. Drinking, staying up late, not getting enough sleep or not eating right – all of these things could affect my ability to fight off infections. I had to figure out my personal limits, and if it meant spending a Friday night by myself in my dorm room, resting, so be it.

Managing my Health

Now on my own, I had to manage every aspect of my health.

  • Taking all of my medications on time.
  • Arranging ways to get back and forth to my doctor (freshman weren’t allowed cars on campus, and I didn’t have one, anyway).
  • Getting enough rest, including sleep and in between classes and other commitments.
  • Eating enough to maintain my weight, and finding foods in the cafeteria that didn’t cause further belly problems.
  • Maintaining a relationship with my doctors who were now 45 minutes away, and scheduling visits in between classes.
  • Dealing with coughing in class (suck on cough drops, sip water  constantly, and sit near the door for a quick exit).
    • I didn’t want to present my CF as an excuse, and one or two of my professors actually asked me, “what do you want me to do about it?”
      I told them, I just wanted to let you know, because I sometimes will cough a lot, I might miss classes, and I might need extensions on projects or papers if I end up in the hospital. I knew that at least on of them was going to give me a hard time, so I registeered with teh school’s Disability department. This protected me from academic punishment should I be absent or miss a test or deadline, but I knew that I had to do whatever possible to make sure that I didn’t miss class. I had to continue to inform new rofessors each semester. It got easier over time, but it was still nerve-wracking.

Meeting New People

During freshman year, you meet a lot of new people, no matter  the size of your campus – in class, at the cafeteria, walking on campus, at parties. You get used to summing up your life in a few sentences. “Hi, I’m Toni Marie, I’m from Trumbull…”

  1. I used to get one of two responses:”Where is Trumbull”, to which I answered, “Fairfield County, kind of close to NYC.” or
  2. “You mean Trumbull as in the Little League World Series Trumbull?” Yes! My town had just won the Little League World Series. It was our claim to fame now on.

Should I tell people that I had Cystic Fibrosis? I decided to only do so should something come up, such as a cough, an absesnce, or if I needed class notes. Otherwise, I had a new life here. I didn’t have to be the sick girl. As the shcool year went on, I found that it was much easier to determine how or if I told people about my CF. After a while, people knew about because they observed me being sick, coughing in class, etc.

Surprisingly, I made friends. I even pledged a sorority!! I also met my then-long-term boyfriend in December, and it was a really good relationship for the first few years. His parents were wonderful and his entire large, extended family treated me like one of their own.

I didn’t have the safety net of people from my high school attending my college, so everything and everyone was brand-new. One awesome experience was the opening of the school’s new sports center, which had a gym. I first went there to see if they had the same equipment I had used right after my first knee surgery, and I found the school’s basketball team there, working out. They showed me how to use all of the machines, and I fell in love with working out. Since I didn’t have shows and dancing to keep me active, I relied on walking to class and now using the gym to get and keep me in shape.

Oh, Yeah, My Health

During my freshman year, I had several ER trips and two stays in the hospital.

I had my very first kidney stone. It began as a vague pain in my upper back. I visited the school medical center and the doctor said I probably had the flu, and literally told me, “take two tylenol for your fever and come back tomorrow.” That night, it grew worse, and my roommate called the campus ENT. Fast forward to my mother appearing at the hospital Emergency Room, and being told I was being transferred to Yale (location of my CF clinic) for a kidney stone. I spent five days in the hospital there and missed several days’ worth of classes. Heavily medicated, I couldn’t do any  work while inpatient. Once my kidney stone was resolved, they discharged me on a Saturday and my mom drove me back to school the next day.

That pesky leg injury also had begun acting up, and making it difficult to walk on campus. I was trotting up the stairs one day with friends, and my leg popped. It was excruciatingly painful. Once again, the campus ENTs showed up, and I was back in the hospital – a different one – getting exploratory surgery on my leg. On crutches, I had a hard time getting around. Luckily, my registration with the school’s Disability department gave me access to campus security “escorts”. They drove me to and from class while on crutches and for a few weeks afterwards while my leg healed. I just couldn’t get from building to building in time, when my classes were scheduled one after another.

As usual, I got sick frequently, but the experiences of freshman year really got to me. In addition to the hospitalizations, I had a few really bad respiratory infections, and I felt myself slipping towards the end of semester, About a week before final exams, I realized that I was too far behind and arranged with the Dean of Students to leave school a week early and make up the work and my exams over the summer. I took “Grade I” for most of my classes – indicating “Incomplete” and pending my finishing the work.

Leaving school a week early also meant I had to give up the sorority I was pledging, which was really hard because the girls were a huge part of my life. It was really difficult to leave so much behind. I felt like it was junior year of high school all over again. Surely, it wouldn’t be the last time I had to take “Incomplete” for my classes, because my CF always interfered. But at least now, I had some breathing room to finish my work without everything hanging over my head.

Sophomore year was a little less crazy health-wise, but I continued to get sick quite regularly. The point where I finally lived alone in my dorm room gave me a chance to “be myself” in my own room. I slept with a fan on to help create some white noise so that my coughs didn’t reverberate so much in the suite, and I didn’t have to worry about offending other people with my stomach issues.

And the Walls Came Tumbling Down

At the end of my sophomore year, the country had entered a recession, and my family’s situation prevented me from going to school the following year. It was really difficult, knowing that I wasn’t going to come back. I didn’t have a ton of friends on campus, but I would miss it. Plus, who wants to “move back home for good” at 19?

Once I was back at home, a lot changed.

I tried working at the mall, but the hours sucked as much as the pay. I sold clothing but didn’t earn a commission. In fact, I sold so many clothes that I was actually awarded the title of top salesperson in the nation in the chain of 175 stores, and all I got was a plastic green watch.

In the middle of 1992, we moved, and I got a job at another retail store, closer to home. I had been interviewing everywhere, but jobs were hard to find. After my second check, with my mother co-signing, I put a down payment on my first car. I continued to interview anywhere I could. About three weeks into my retail job, I got a phone call. It was someone from the job that I really wanted – they asked if I could come in right now. I flew over there, and by the end of the interview, I had the job – the Service Manager of a very successful appliance store. No, I didn’t have an interest in appliances, but it was a well-respected family business (I knew the family because the owners’ children attended my high school), it paid well, and it had health benefits (after six months).

Yes, I went without health insurance on and off for several years. It was risky, it was scary, and it was a logistical nightmare. I hoped that this job would put me on the path to getting my life back together, perhaps even lead me back to college and finish what I started.

 

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