My Cystic Fibrosis Journey: 1976-1978

I have few memories of my year in Kindergarten. I only attended half-day afternoon kindergarten, so I only spent a few hours a day with other kids. Every month or two, I had to miss a few days of school to go to my regular CF doctor appointments, but there was so much to see and learn that I never felt “left behind.” It’s not like we learned how to A, B, and C in a single day and never came back to it.

I always had a cough and belly pain, but otherwise, I didn’t really notice how different I was until the first grade, which I entered in the fall of 1976, where I was surrounded by dozens of kids against whom I could measure myself.

I was different.

1975 – 1976

First, there was a schedule.

We had to wake up early enough for everyone in my house to get ready in our one bathroom. People with CF tend to spend a lot of time in the bathroom in the morning, having multiple, voluminous, and painful bowel movements – hard to manage when you’re sharing a toilet with five other people in your family. So I had to sometimes run back in there in between each other person’s visit to the bathroom. Not exactly fair to a bunch of other grade-schoolers (my siblings), but necessary.

We also had to present ourselves impeccably. Clean, neat, uniform dresses, ironed blouses, stretchy knee socks that never stayed up, and sensible shoes that we had to care for, since it was the one pair we wore all year. We had to brush our hair and keep it out of our eyes, which usually meant a tight ponytail or a fountain-type half-up/half-down thing.

Schedule-wise, most school days in Grades 1 and 2 were pretty much the same.

On a typical morning:

  • School started at 9am.
  • Stand up to say the “Pledge of Allegiance”, followed by the “Our Father”.
  • Listen to morning announcements seated at assigned desks in our classroom.
  • Start classes.

I went to a private Catholic school, which only had 2 classes per grade. However, this was the 70s, and classroom populations were huge – 30+ kids in each class. Morning lessons usually consisted of the basics:

  • The “Three ‘Rs” – Writing, Reading, ‘Rithmetic
  • Spelling
  • Social studies
  • Religion class

After morning classes and before lunch, we had our first restroom break. At our school, there were no “passes”. Unless there was a problem, you got two chances to use the facilities, and always within a timed, orderly manner. If you’ve been reading about CF, you’ll know that we often have a lot of stomach issues, and learning to manage those as a 6-year old was traumatizing. I learned to disguise noises by coughing, shuffling my feet, and flushing repeatedly. I could not, however, contain the typical foul odor of CF patients’ stools.

We filed into the hallway to line up each time, usually by height. I was also always the shortest one in the class, so I always went first. (Looking back, that may have been a good thing). Once done, we walked quietly – in single file – to grab our lunches from the cloak room in front of the classroom, before heading back to our desks. Our Catholic school system had limited financial resources, so we didn’t have a cafeteria. Through the third grade, we stayed in our respective classroom all day for everything, including our lunch period, so we relied on brown bags, lunch boxes, and Thermoses to keep our food ready until lunchtime arrived.

  • Lunch time! Run walk quickly!

Before I could eat, however, I had to walk to the Principal’s office where I met my mother to take my Enzymes. Every day when I got back to my desk to eat – late, so everyone else was almost done with theirs – I got questions or stares. My mother continued coming to school daily until I graduated the 8th grade, to bring me my medication so that I could eat (see the explanation here). The kids didn’t understand where I went, and I didn’t know how to tell them what I was doing.

How does a 5-year old explain CF and enzymes?

Once we had our lunches in our bellies, we put away our lunch boxes and grabbed our coats, then lined up again to go  outside for recess. I don’t think we went anywhere without quietly walking in a single or double file.

  • Recess!

Boys on the left and girls on the right, all of us looking ahead, we walked quietly to the “playground”. Making noise or dawdling earned you a reprimand or worse, having to stand against the wall of a small brick building and watch everyone else have fun.

Note that we lived in an urban neighborhood, so the “playground” was the overflow asphalt church parking lot. We played jump rope and kickball, making sure not to fall on the broken glass that littered the areas near the fences. It wasn’t pretty, but it was fresh air, a chance to release your energy.

Recess was awesome, except when it wasn’t. If I was coughing more than usual, or when it got colder out, my teachers kept me inside. While everyone else was running around, playing, interacting, I was inside. I usually spent the time helping the teacher put up new bulletin boards or prepare for art class. Another conundrum – how to explain why I had to stay inside” or “got to stay inside” on chilly days. Some kids saw it as a punishment, others saw it as a treat. I first heard the phrase “teacher’s pet” around this time.

Looking back, restricting physical activity to a CF patient was actually more detrimental than helpful – activity encouraged coughing, which helped get out the mucus from our lungs. as long as I wasn’t having problems breathing, I should have been encouraged to play and run around as much as possible, but these were the 70s, and my parents and my teachers thought I would break into a thousand pieces if physically challenged.

After recess, we usually did “soft” stuff after lunch until 3pm, which marked the end of our day:

  •  Art class / Music class / Visiting the school Library (switch each day)
  • “Reading at your desks” – in first grade, this took the time that in Kindergarten would have been “quiet time”
  • Worked on special projects like Science Fair, annual Variety talent show, or an upcoming church celebration, or talked about field trips.

Oh, field trips!! The few times during the year when we got away from the daily grind were magical.- the days leading up to it, getting the permission slip signed, hoping that you got to sit next to someone you liked on the bus ride.

These were the days everyone looked forward to – well, not everyone. I missed seeing the Police Station because I had a doctor appointment. I missed the Fire Station because I was sick and home for three days. I did get to see The Nutcracker, but only got to go to Field Day if my mother could chaperone. I had to take my medicine with everything I ate, including during field trips included lunchtime. So for every field trip I went on, my mother had to chaperone.

It’s hard enough making friends, but when you’re different – coughing a lot, having to miss school for doctor appointments, etc., – having Mommy at every field trip both made the other mothers jealous and the other kids not want to hang out with me during the trip.

Having such a regular schedule meant that 31 kids could actually learn something and move on to the next step; not just academically, but socially. In the younger grades, concepts took much longer, but each day’s work built off what we did the day before. So when I had a doctor’s appointment, my mother had to pick me up from school early – usually at lunch time – and I missed the rest of the day.

When I was sick, I missed everything. My siblings or my next-door neighbor (my age and my class) would bring home the work I’d missed, as well as my homework for the day. And I did get sick, a lot. (LOOKING BACK Thankfully, I didn’t develop the specific lung-damaging infections (Pseudomonas Aeriginosa) now known to decrease quality and length of life until I was in my late teens, but I got frequent bacterial infections that often made me miss a week of classes at once.

2:59 pm. The end of the school day.

My mother us too and from school because we were lived too close for the school bus but too far to walk. On days that I was home sick, I had to hop back into the car, huddling in a blanket shivering due to fever, or hiding from the rest of the kids getting out of school on time because I was embarrassed. When my siblings got into the car, I had to made sure that they had all of my homework assignments and books needed for that night. Being sick never meant that I skipped homework or projects. It wasn’t so much the teachers or my strict parents. I wanted to be normal in every way possible, and getting my work done on time was a very important part of that goal.

Before I even began school, the teachers and school principal asked my parents if it would be easier for me to go to school only 4 days a week, but they said no. Again, there might come a day when I need to take a large amount of time off, and this was like “banking experience” for the future.

1976-1978

Second Grade came along, and it basically built upon the stuff we did in First Grade.

I don’t recall a lot about that year, except for two events.

The first was the journey of making my first Holy Communion.

Spring 1978.

Spring 1978.

It was a lovely day, and I remember I had a lovely dress. It was a big deal in Catholic school. We prepared for the entire year. My faith is one of the few long-lasting positive things in my life. I don’t remember remember a time as a child when we didn’t go to church. I thank God for everything I am and everything I good that I have become.

I also credit God with giving me the strength to physically, mentally and emotionally deal with everything I had to experience.

Such a day occurred in the winter prior to my Communion.

The day began, covered in white; an overnight snowstorm brought us a “delayed opening”. That meant school started 60-90 minutes later, so that the city could plow the roads. Snow also meant that we kids had to wear giant “snow boots” that covered our regular school shoes. Most of us only had one pair of school shoes per year, so we couldn’t risk ruining them in bad weather.

That particular snowy day, I leaned over my desk, struggling to get my boots off. One of the other girls, Michelle, also had a hard time, and when she finally pulled her boot off, her shoe and her sock came off. Apparently this was funny to us second graders, and everyone laughed. I remember the teacher running into the room, slamming the door, and yelling at us to hush.

We couldn’t stop laughing, so she punished us – we had to write out 3 full pages from our religion book. That must have been “a thing” in the 70s, because my mom used to make us write things 100 times over as punishment at well (think Bart Simpson in the beginning of every episode). All it gave me was early carpal tunnel syndrome.

Anyway, I had already had a stomach ache that day – not unusual, but laughing made it worse, and while the class was silently copying word. after. word, page. after. page, from our religion books, I started to shake. I put my head down for a minute to quell the shivers brought on by stomach pain. In front of the entire class, my teacher asked me if I was making it up. I’m not sure what felt worse, the stomach pain that eventually sent me running to the restroom, the hurt feelings that I would lie to my teacher, or the embarrassment of her questioning me so publicly. I knew that lying was bad, and given how much pain and discomfort my CF brought me, I couldn’t imagine faking it. I had enough negative attention and missed opportunities.

That was the first time someone in authority confused me of faking poor health.

That episode stuck with me, and I’m sure, stuck with the rest of the class, too.

Would anyone believe me, ever again?

 

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