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One of my little CF buddies is down about his being different because of CF. I’ve been working a lot on empathy recently, and I can super-relate to how he feels. Growing up with CF wasn’t easy for me. In fact, growing up wasn’t easy at all, and many who know me really well would argue in fun that I still haven’t grown up even though I am 32 now. Why, just tonight I make a crack about beans and musical fruit in mixed company. /sigh
This is going to be a rough ride, but I want to let every single CF kid who reads this or has this read to them to know that I understand some, most, or all of what they are going through – because I’ve been there, done that, and now I wear the t-shirt. Am I over all of it? No, not even close. I could probably still spend another 2 years in weekly counseling to get over my past. It still haunts me and it makes Beautiful very sad to hear me speak of it. Reading all at once will probably make her cry.
My intent is not to make anyone sad, place blame, or bring up old stuff as a way of making people feel bad about any of it. People did their best with what they had, most of all my parents who had to deal with financial issues having two kids with CF and losing one and having quite the impossible one who survived. While I’d change a million things about my life, I wouldn’t change my family.
The key is to not wallow in it all of the time, forever. I don’t. I shouldn’t even think of it as often as I do, but social triggers are everywhere.
School
School was especially difficult for me for a variety of reasons:
- In a class of 72, I was one of the 2 or 3 smallest boys (and girls) every year.
- I had glasses. Not just any glasses, but the plastic ones because I was always breaking them by playing rough or getting roughed up.
- I was really smart, which got me disliked, so I switched to acting up, which just made my life miserable with my teachers and parents.
- I was in the hospital a handful of times during school, but usually 2 weeks every summer and I started with the sinus surgeries around the 4th grade every couple of years. I remember one year, my entire class drew an outline around someone on a roll of paper and everyone signed it with a “get well” note. We kept it for years, and I wouldn’t be surprised if Mom still has it.
- Because of antibiotics and a couple of colds, I had managed to have a couple of unfortunate accidents of a #2 variety at school when I had the misfortune of not recognizing that the pressure was not gas. Those memories stuck in everyone’s mind forever and was something that wouldn’t have happened if I wasn’t different and I was smart enough to know that.
- Because of school policy from kindergarten to my senior year, I had to go to the school nurse every day for my enzymes. For 3 long years, that meant walking 200 yards to the newer elementary building from the old building that was 4th-12th grade in the rain and snow. I was singled out every day without exception. Constantly reminded that, “no, you are not normal, and you never will be.”
That bad stuff all happened by the time I was 9 or 10. By the time I was in the 6th grade, I’d gotten over most of that and was back to being a teacher’s pet, getting straight A’s, and especially excelling in math, science, art, and spelling. I managed to find some way to find something I could do well in every class so I wasn’t last in everything.
For example, I was one of the favorites in kickball in our gym class because I could almost kick a home run every game but I was so hard to hit with the ball because of my size and so fast, I was usually only ever forced out. I really stunk at baseball, but I could catch pop flies on the run, so I was a good outfielder. I couldn’t draw or paint the best, but I had the best eye for composition.
Relationships
This is sort of related to school, because I had many relationship issues that go back many years because of my being different. I had very few friends in elementary school that remained my friends every year. There were a couple of years that I really ran with the wrong crowd because my 2 closest friends were put in a different class than I was. These kids were rough, and I thought that if I hung out with them, I’d be cool and protected rather than targeted. You know, keep your friends close and your enemies closer.
That didn’t work too well for me. I was sent home a couple of times, had to take notes home from my teacher, and spent countless hours writing sentences about – I don’t know. I don’t think I could exactly say without making every adult in charge of me sound wretched, but it was a different set of rules back then. I can tell you that it didn’t work. The kids knew what was going on and would provoke me. It wasn’t enough to be different by genetics, I was singled out. I grew to distrust adults and hate my peers.
I had several classes in Jr. High that started to turn me around: science, American History with an 80 year-old teacher who’d had both hips replaced – twice, art, drafting, choir (yay for voice changes), band, and after school quiz bowl with the vice principal. I found real friends and teachers who were able to handle my quirks and turn them into very strong positives.
From the 8th-10th grade, my popularity started to rise with the exception of the “DogBoy” nickname year (a very long, and now, funny story). I was welcomed to the back of the bus on band and choir trips where only the “in” people could be. I made the varsity golf team, which was historically one of the best in the state. I got my letter jacket and got to put my varsity (not junior varsity) letters on it: a true mark of being cool. Just like graduating from college, no one can take that away from me.
In the long run…
I turned out okay. Sure, I’ve got physical and emotional scars that may never heal, but I’ve got a great life. Little buddy, try to not get too down. I didn’t have anyone, not one single older CFer to know about or ask about life when I was growing up because they were too busy dying. Things have changed! We are thriving! I want you to, no, I expect you to be something great, somehow, some way, some day. You probably won’t have any idea what that will be for a very long time, but it will happen. I believe in you. A wise, old man told me that one day when I was about your age.
He was right about me. It took a long time before it happened.
You (and any of you young CFers can contact me any time, day or night, and I will respond to you personally or pass it on to Beautiful or my parents if you want to hear from them. That is why I was born with CF. For you.
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CF Fatboy is a small business owner flourishing in Tampa, FL. He and Beautiful have been married for 5 years and are doing everything they can to ensure they have a long life together.
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