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3 Things I’ve Learned About Life Because of CF

Colored GlassesHaving cystic fibrosis makes you a different breed one way or another. There are stronger CFers and  there are weak, defeated CFers, but none of us are “normal,” no matter how hard we try. We are automatically changed, forged by CF into something different than who we would be without it.

A favorite topic among CFers is whether or not you got a genetic a re-do on life if you’d take it because of the different person you’d be without CF. I’d give up CF in a heartbeat and take my chances with my body working correctly and see what kind of person I’d be. A few things would be different, but not too many, I don’t think. One of the things is perspective. Here are some things I’ve learned about life because I have CF.

  1. Life is short: Yeah, yeah. That’s cliché, but “normal” people say that. We have CF and have been given a different life expectancy number from the time we can remember. What we do with that expectation and how we let it affect us is what makes us different. Some live with a gusto, taking in as much life and accomplishing as much as they can, not knowing when their last day is, but expecting that it may be sooner rather than later. Some don’t try to surpass expectations and think that is their “death date.”
  2. Don’t expect too much from others: While you might be able to empathize with the rest of the world when they get a cold and can’t breathe or get cancer and have IVs and no energy for days or weeks on end, they can’t truly empathize with you and will say things that will confuse or even hurt you out of ignorance about CF. Even Beautiful, as wonderful and supportive as she is, has hurt me with assumptions about what it’s like to have CF or expectations of what I can do on a given day. She knows much more about that aspect now than before, but now she doesn’t assume – she asks. Cut others some slack, even though they don’t know what you’re going through. They don’t know what they don’t know.
  3. Support groups work: This is my most recent discovery of the three. Before this site came along in March, no one who hadn’t known me for years or had seen me be really sick knew I had CF unless I did something really weird and out of the ordinary: just tell them. Telling people has always been tricky for me, but this site is my new outlet. I also have over 100 Twitter CF-related friends who actually know what’s going on. Simple things like talking about your scars becomes a bonding topic. Not bonding in a normal way, though. It’s almost inexplicable. It’s simply an “I understand you” bond that we don’t get from other people, but don’t need to come from our spouse or other loved ones. It’s enough to know that someone out there knows how you feel, not by telling them, but just from experience.

What have you learned about life because you have CF?

Comments

  1. Unknowncystic says:

    I gave you a 10 for the post and a 10 for being honest about not wanting CF if you could have a genetic re-do. It's so nice to know I'm not the only one who would give it up. Thanks for that.

  2. If there is one thing we can all do as CFers is to be honest about things of this nature because of #3, right! Thanks, me Fibro.

  3. #3 has been my most recent discovery. It's so helpful to be able to converse with others that “really” are going through the same thing and “truly” understand – not just empathize. It's like I live a dual life… My regular day to day – then my cyberspace CFers. My hubby doesn't understand it, but, I need it and will continue to share and follow…

  4. Since I don't have an office job now, I live a simultaneous dual life during the day. 😉 All I have to do is switch between Twitter accounts on Tweetie and talk to a different group of people. You're right – we do need it.

  5. rhondab30 says:

    From a spouse of a CF'er, I fell in love with Jesse's site from the first read. Not only informative, but a support group of one who is similar in condition to J. Also having Beautiful to relate to. Had it not been for J's CF, I don't know if we would have met. His parents lead a strained marriage into divorce because of his and his brothers CF. Had neither one of them had the disease, there are many things that would have changed his course in life. I am not jumping for joy that he has CF. I would trade it for a do-over any day so long as our paths still crossed. I know that coming into a relationship with me at first, J was a better father to the twins than I see most “natural” fathers to their own children. He had been told from the time he could understand that children were not likely to be a part of his future (of his own DNA). He loved and appreciated what he had before him. I think #4 could be appreciative. What J has learned from his CF is to be appreciative of what you have. I saw that first and foremost after we really started to get to know one another.

  6. Great post Jesse. As you know, I'm one of those idiotic CFers that would choose CF all over again, but I certainly don't think the answer to that question reflects anything about us as fibros. I just know me. I know beyond a shadow of a doubt that I would be living a completely different life and be at least slightly a different person. Now, with that said, CF has already molded me and if you could take it away now?? YES PLEASE!

    Ronnie

  7. That's a great #4! One that I struggle with because I want more out of life all of the time. I'm pretty driven and struggle with having “more than enough.”

  8. Yeah, you dance to a different tune than I do on half of things and the same tune for the other half. Definitely take it away now.

  9. Lotsa wisdom there, Jesse. Very well said. Figuring out those three things really takes a lot of the bumps out of life. Who needs more than what you already have, right?