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The Power of Words

The power of words is potent. The words we use mean a lot and say a lot about those using them. It’s a big stretch to say that they mean everything, because actions speak louder than words, but we are a species that communicates with words – whether spoken or written, heard or read.

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This is why I am so picky (some would argue, touchy) with words. Words convey so much more than people realize until they really think about it or until words affect them in a profoundly positive or negative way. I do not suffer with (or from) CF. At some point, I may be suffering from the effects of CF, but that is an entirely different statement by the message it conveys about one’s state of mind.

A sufferer is a victim. A person suffering from the effects of a disease or disability is someone with pain or a difficulty who refuses to let that be ruler of their lives. This is why I used to be so hesitant to let people know about my CF. Not so much now, but I’m still not going around as a poster boy because I’m a husband, Christian, entrepreneur, and lover of fine books and food long before I’m a CFer.

CF doesn’t define me; it is only a semicolon in my Webster’s entry. I would be giving up too many of my personal liberties to take on the shroud of that label, and I’m simply not willing to succumb to the debasement of my personal view of myself or the view others hold of me. One day I may very well need help from people, so until that day comes, I’m going to give to others.

What words are you using? How can you change your words to change your life like that man?

Finding Meaning in the Trials of Life

Hiding Behind HandsIt’s been pretty common for me to be able to look back on events a few days, weeks, or months back and be able to at least see some good in something bad that happened, even if I don’t see the actual reason why something bad happened. I’m introspective and reflective like that, especially with the number of boring jobs that didn’t utilize my brain to the fullest… even if my hands and feet were busy all day.

What I’ve always had a harder time doing is finding meaning to – the deepest reason for – the worst things. In fact, I went a whole 31 years before I had anything more than an inkling about why I have CF. The best I’d been able to muster before the end of last year was that people are always watching me if they know I have CF to see how I respond to things of life and to see if I ever use it as a crutch or if it’s consuming me.

On several occasions since I was 18, I’ve had adults many years my senior tell me in small groups or in private that they admire me for my courage or whatnot that had an impression on them… but that doesn’t seem like enough of a reason to me. Does it to you? That’s along the same lines as reasoning that I have CF solely to bring glory to God by not despising Him through my times of suffering or trials. While I whole-heartedly agree that is a piece of sanctification, I don’t think it’s reasonable to conclude that this disease exists and affects certain people of all walks of life in order for some of them to shine and reflect good through it.

I believe I’ve found the meaning, at last. I mentioned it yesterday and once earlier: I have CF so I can help those who come along behind me. [Read more…]

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.”

[Read more…]

Back Home Already

For those of you who don’t notice or subscribe to the normal “holiday” of April Fool’s Day, that’s when this was written and what it was written for. It is so far over the top, if you’re not laughing your head off, there is something wrong and you should go get it checked out. Enjoy!

SmilingI’m back home already from this morning’s bionic lung transplant! Wow, these new lungs are AMAZING!! Since they basically are ventilators, they didn’t need to put me on a vent or anything when I came out, so recovery was just a matter of hours. Also, without having a lot of foreign tissue taking up a lot of space, they said the swelling they expect didn’t require putting in drainage tubes, so they sent me home after I could eat a meal and go to the bathroom.

I highly recommend bionic lungs! Here are a few things I’ve noticed or done since I woke up:

  • I can sing the National Anthem in one breath.
  • There is a certain face I can make that causes the lungs to sound off like humpback whales.
  • When I jump up and down, they make a cartoon-like “boingy-boingy-boingy” noise.
  • Running all the way home from the hospital was very exhilarating, especially with all of the construction.
  • My vision is suddenly 20/20.
  • My farts smell like roses.

Excuse me, but I’m going to go list all of my equipment on eBay now.