My Cystic Fibrosis Journey: 1980

I began fourth grade in the fall of 1980.

This was the year that we began “changing classes” for a few subjects – Math and English. It was a big deal – we were now doing one of the things we associated with High School! When you spend 9 years with the same 60 kids in a small 3-story building, anything new or different was cause for celebration.

However, I was still the “sick girl”, still the smallest in the class, still missing too much school, still missing part of my lunch period to meet my mother at the school office to take my Enzymes, still had to deal with CF.

I always had “CF tummy problems,” but for some reason, they were worsening.

I remember an episode in class when I inadvertently farted in class. Usually I can feel them coming.

The teacher had given us a writing assignment, and we were all quietly working at our desks.  I leaned forward in my chair to see my paper better and the fart slipped out. In this particular classroom, the teacher reorganized the desks every few months, putting them into different groups of four, so that we got to sit and work closely with different kids throughout the year. This differed from the way most other teachers set up the desks – they usually just sat the kids in rows according to last name, which meant I always sat in the row next to the windows. In the current setup, I was in the back of the class near the door.

When it happened, as one would guess, the class erupted in laughter. Pun intended. I was mortified. I don’t know if anyone knew that it was me. The teacher got really mad and asked “who did that?!”, but nobody said a word. She then stood up and asked again. Still nothing.

“If nobody tells me who did it, you’re all going to have detention today” she said, and sat down, fuming. “You have until the end of this assignment.”

What was I supposed to do? I couldn’t let the other kids get detention. Detention goes on your permanent record! But I couldn’t admit it. My CF was making itself known in another way. I was getting grosser by the moment.

I don’t know how I lasted years without the kids knowing about my tummy problems. Perhaps because I always sat in the row next to the windows, the air would diffuse the odor. The old school building had radiator heating, which got really hot, so we usually kept the windows open, even in winter.  I had already become an expert at disguising the sound of passing gas, either by clearing my throat, dropping a pencil, or adjusting my chair.  In the back of the room, I was stuck.

So there I was, crying inside because I had to admit a shameful sin. I became aware of a lot of whispering and giggling in the room, but I tried to play it cool. Thankfully, at some point, we each had to walk up to the teacher’s desk to hand in our paper, so when I finally summoned the courage to take my trip to the front of the class, I leaned in and whispered to my teacher “It was me, I’m sorry”.

By the grace of God, she must have realized that I wasn’t trying to be obnoxious, and waited until the end of the assignment to say that the perpetrator had apologized and that nobody would have detention. A few kids who sat near me accused me, and I just ignored them. As I said above, I was about to have a lot more to worry about.

Looking Forward, Getting Left Behind

October came around, and for the entire month, everyone looked forward to Halloween. Each class had a Halloween party and got to bring in costumes to wear during the party.

Now, throughout grade school, I saw my CF doctor every other month. Every eight weeks, I attended my CF clinic on Tuesdays at 1pm. That gave my mom time to pick me up from school, drive the 20-30 minutes to the hospital, get me checked out, and get back to school in time to to pick up my brother and sisters. Occasionally, if there was time, my mom used to stop at Wendy’s and we’d eat lunch while parked in a parking lot looking over the Housatonic River. It was a fun way to cap off what was often a bad day.

I vividly remember waking up one morning, and my mother told me that I wasn’t going to school that day, because I was going to see my CF doctor. I was confused. I only saw Dr. D. on Tuesday afternoon, while still wearing my school uniform. I never went on a random day.

We got there and they took me in immediately. I honestly have no recollection of the events leading up to it, but I recall sitting on the paper-covered exam table, my legs dangling. In the middle of the appointment, the doctor walked out of the room, and my mom turned to me.

“You’re not going home” she said.

What??

The doctor wanted me to go into the hospital, she said.

“And sleep over?” I asked.

My mother nodded, and I began listing what I needed to get from home. I remember talking about what clothes I wanted to wear, and my mom said “you won’t need clothes”.

I was so confused. She was leaving me here? Why? I either couldn’t or didn’t understand, and I guess it’s a good thing, because according to my parents, I was very, very sick and very, very close to having serious surgery.

My next memory is laying in a hospital bed with another kid in the bed on the other side of the room. “Tommy” had just celebrated his birthday and had signs all over the place. That night, Tommy went home. I never got another roommate, which was probably a good thing given how bad things got.

The memories of the next few weeks are fuzzy, but a few things stand out, like movies in my mind:

  • My left arm strapped to a piece of wood, keeping my IV secure.
  • My mother measuring out how much water I could drink by drops. I had a problem with my Kidneys, so my fluids – in and out – were strictly monitored.
  • Tummy pain that worsened the longer I was there. I tried to convince my parents that it was the hospital making it hurt.
  • My mother bringing me a stack of “get well” cards that my class made for me, and me thinking it was all a bunch if baloney because they picked on me often.
  • Hearing the doctor say “we might have to go in” (meaning surgery). I also had an Intestinal Obstruction, something that is common in CF patients.
  • My mother running down the hallway with me in her arms, to the group bathroom (there were no bathrooms in patient rooms) because I was vomiting and having diarrhea at the same time.
  • Pain so bad,  that at night, my dad (usually my mom did days and my dad did nights) holding me and walking up me up and down the hallways until I fell asleep. At nearly 9 years old, I only weighed 39 pounds, but After hours, I can’t imagine how awful it must have been.
    The constant movement was the only thing that soothed me.
  • Pain so bad that I cried out, “I don’t want to die” over and over again.

The pain was THAT bad. I don’t recall them giving me medication for pain, and I didn’t have anything to eat or drink for close to two weeks. I’m not sure what was worse, the physical pain and feelings of deprivation, or not understanding what was happening and fearing that I would die.

In the hardest moments, when even my parents couldn’t soothe me, I remember my nurse – her name was Dale – coming into my room, kneeling on the side of my bed, and talking to me. I don’t recall anything she said, but somehow, I felt safer when she was around. I cried every day when her shift ended, and begged her to come back the next day. I don’t know what the nursing shifts were like back then, but she seemed to always be there when I was most afraid.

After a few weeks, I began to improve. A few highlights stick out in my mind.

  • Getting to choose anything for my first real food, and while they wanted to start me on soft foods like Jell-O, I asked for fried chicken. Somehow, in ancient 1980, the hospital cafeteria made me fried chicken. I had it for lunch and dinner for the remained of my stay. They later moved me to a ward with ten beds in it, separated only by curtains.
  • Each two beds shared a television. I shared my tv with the girl to my left. At first, I was aggravated when she wouldn’t put on Woody Woodpecker at 3 o’clock, but after finding out that was a child abuse victim – I heard the nurses whispering about it when her hovering parents left at night and I saw her bruises – I just watched whatever she wanted.
  • Visiting the playroom at the end of the hall, and also attend “school,” which was essentially was organized word games in the playroom. I remember the “teacher” asking me to stop raising my hand and give the other kids a chance to answer (which few did). I know it’s dorky, but I missed school so much.

Just as the whole hospitalization began, it was suddenly over and things slowly got back to normal. It seems to be the way things go – something flares up, I feel terrible, I get treatment, and life goes on.

And we did move on.

I was discharged a few days before Halloween. Because of my kidneys, I wasn’t allowed to have certain foods, including chocolate. I was also too weak to go trick-or-treating, so my mom had planned a Halloween party at home and invited our sibling/neighbors S, T and J, my Godmother and her kids (we called them our “cousins), and the new kids who moved into the house on the other side.

My mom and I went around from store to store, buying decorations, treat bags, and lots of candy – both chocolate and non-chocolate. I had lost a lot of weight during my hospitalization, so I was smaller than normal, and I still fit into the shopping carts. That worked out great because I was still pretty weak. We turned it into an adventure, and topped off the shopping trip with a visit to our favorite Hot Dog stand.

Lessons Learned

That period of time was the first time I realized how serious CF can be, and the preciousness of the gift of life. It also prepared me for a life of tests, pain, and lots of unknowns. I could choose to live in fear of tomorrow, lick my wounds from yesterday, or, like we did in October 1980, cap off a really rotten month with a party full of candy and games. I know which one I hope I’d choose.

What about you?

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