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What Is it Like to Be Different Because of Cystic Fibrosis?

Traveling OverseasOne 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.

Letter JacketFrom 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.

Comments

  1. Anonymous says:

    Even though you managed to keep it pretty upbeat for the subject matter, this one really made me cry. I know what it’s like to be different for my own reasons. The hardest part is that in the end it’s not my struggle- and I can’t make it better for J or you or anyone else. I remember once when my daughter was having a particularly rough time and I was upset, my best friend said to me “remember all the bad things that happened to you that made you strong? They made you who you are, and we wouldn’t have each other if it weren’t for that.” and my answer was that I didn’t want her to have to be strong. And I feel that way about J, too. I wish with all my heart that the cost of that strength was going to be just a little less. It makes me feel so powerless. But in the same breath, I would rather he grow to be strong because of it than weakened by it, and for that I am so incredibly fortunate to have a few amazing, trailblazing role models for him to keep me in check when my mommy emotions get the better of me.

    • That reminds me of a recent post I read from a parent who was talking about taking their son to the park where the boys would fight and roughhouse. He’d eventually end up on the ground, pinned by the shoulders of some oaf who was twice his weight. It took everything they had to not go run to his aid, but he was learning valuable social and physical skills.

      You probably have a tiger who has yet to be unleashed. He will show his true colors one day… you just have to wait for it and be able to pick out his true colors from all of the paint and blood that will happen in life as a kid who will be different. I can tell he’s in good hands.

  2. This one is one of your best posts. Thank you for the inspiration and opening up to us. I was one of the tallest in the class (girls and boys), so yes I know a little bit of what you went through in school. I wish kids would just get along. ๐Ÿ™‚ But like Amy mentioned, all of those things just make a person stronger.

    • Thanks, Anna. It’s amazing how some kids can overlook the biggest defects
      and disabilities, while others will rip kids apart for what they are
      wearing. I think they learn some of it from their parents, so I’m going to
      have to be mindful when we have kids.

  3. Wow, Jesse. You are just getting more and more transparent. What an awesome post. I’d have to think that processing these thoughts and memories so you could write them was as helpful for you as anyone else.

    And by the way, I’m not just being nice – this is the truth – I really don’t remember you getting sent home or getting notes. But I I do remember stopping the car in the middle of Van Buren square and spanking you because I’d warned you I’d spank you if you kicked the back of your mom’s seat again and you had to give it one more kick. I laugh now, but those were trying days for all of us. You were about as stubborn as they come. I can’t imagine where THAT came from. LOL! But you’ve turned stubbornness into tenacity and that’s a marvelous thing. I think your tenacity is a key ingredient in your relatively good health.

    But these days (aside from the emotional pain I could see you going through) I mainly remember your great grades, your ability to soak up knowledge like sand absorbing a rain shower, your good friends in high school like Mike B. and others, the great rapport you had with most of your teachers, you carrying those cymbals down the street in the Hall of Fame Parade, and all sorts of other wonderful memories of you growing up.

  4. Kristi Bowers says:

    Thank you, when I stop crying, I’ll share this with K.

  5. Very cool of you to whip up a post for a lil’ fibro in need.

    • ๐Ÿ˜‰ He drew me an orca from the hospital – it’s the least I can do. I’ve found a purpose for this wretched gene.

      Everyone gets love, but some will get tough love if that’s what they need. Always the truth.

  6. MiddleAgedLady says:

    Bravo — wonderfully done! Hope this helps many little fibros & cysters.

  7. I remember my good friend being so down in her teenage years because of what our peers said and did. She would skip her treatments and not take her enzymes, hurting herself to be “normal” so that kids would stop saying that she was a junkie or a drug dealer. It was horrible.
    But it got better. Not everyone will always see the disease. As people become more self assured, It definitely gets better, and it’s worth sticking it out and TAKING care of yourself.
    What you’re doing with this blog is SO inspiring for young patients. You’re a shining star.

    • Yeah, I’ve heard of it happening. For me, it was just that life was too busy
      and everything was so expensive as a young adult just starting out. Is that
      friend your connection to CF or do you have another?