Attitude and Perception

Here is another great question by a reader:

Well, since you'll be surrounded by family, I'd like to know about the things your parents/family/extended did to support you with your CF as you grew up. Everytime I "meet" a cf'er who is committed to and passionate about maintainting their health/quality of life I wonder "How do I get Emily to grow up like THAT?" So, what do you think they did that helped to form that positive attitude in you. What advice do you have for parents of cf'ers?

Enjoy your trip!

One common question I get is, "How can you ALWAYS be so positive?". Now, before I answer that question let's just get something out of the way: CF sucks. I know that, you know that, we know that, now let's move on. I am a full believer in the power of thoughts and feelings. I know that we as humans can often talk ourselves into things we are not. For example, if you continue to tell yourself all day that you are in a funk, then guess what, you will remain in that funk all day. If you tell somebody else everyday that they are dumb, then chances are, regardless of actual mental ability, they will underperform and feel undervalued. I mean take for example American Idol contestants that REALLY think that they can sing, but are most likely some of the worst singers on earth. Why do they think that? Well, they truly believe that they sound good and those around them haven't said any different. How are they supposed to know what good is if all the feedback they get is that their voice sounds like it belongs on a record to be played for millions? For them, it's all about attitude and perception. Now, does there voice suck? Sure, but if they love to sing and their family enjoys it, who cares? I say, sing until your heart is content.

Let's relate that to my disease Cystic Fibrosis. My whole life, I have been treated just like all of the "healthy" members of my family have been treated. My friends might have known that I "couldn't sing as well as them", but they didn't care. Why didn't they care? Because they saw me "singing" without a care in the world right along side of them. I never seperated myself from the group. I never asked to be treated differently. A lot of this also stemmed from my mom. If you haven't had a chance to read my Mother's Manual for CF post, I strongly encourage you to do so. My attitude towards CF is a reflection of hers. Growing up, my mom made me feel like I was no different than any of my friends or family members. She would say, "Some kids are in wheel chairs, some kids have to take shots, and some kids have to brush their teeth everyday, you Ronnie just have to do your treatments everyday". It was as simple as that. And as a kid, I got it. My treatments were just something I had to do and my mom didn't make a bigger deal out of it. It was very matter a fact. It was also the same way with me being so active. She never told me to take it easy or to stop running cause I was having a coughing fit. She told me to keep running, she told me to keep up with the other kids and not to make excuses, she told me just to be a kid. That same attitude has stuck with me my whole life. I don't make excuses. CF doesn't limit anything I do. It may be tougher for me to get it done or may take longer, but that doesn't mean I CAN'T do it. This of course then translates over to the rest of my family. They feed off of my cues. I take the same bumps and bruises that everybody else does. I then pick myself up off the ground like anybody else does. So to directly answer your question, you treat your daughter the same way you would treat any other child. If you see somebody else treating her differently, you kindly remind them that she is no different than anybody else and should be treated as such. Kids pick up on that kind of stuff. If they get treated differently because of CF, they'll expect that to be that way their whole life. And let me tell you, nobody in the "real world" cares that I have Cystic Fibrosis. Not my teachers, my bosses, the police, landlords, nobody. CF doesn't give me a license to get away with stuff that "normal" people can't. I see too many parents treating there CF kids "with white gloves on" and I hate to say it, but those gloves come off in the real world.

Now, I did encounter people who would "baby me" or treat me different than other family members. If I was treated differently, I understood. I also understood that if I was treated differently, I was partly to blame. It is my responsibility (and yours) to share with my friends and family my attitude towards CF and why they need not pity me or "feel sorry" for me. They see that I don't take that approach myself and I have fully explained the ins and outs of CF. If my friends were to solely rely on the internet for info on CF, they'd probably think that I was supposed to die yesterday. But I'm not a statistic. I can't be defined as a number. I'm Ronnie. I'm my own man apart from CF and believe it or not I do have more control over my life than this crazy "little" disease.