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The Road Less Traveled

Dark sideOr rather, “never before traveled.”

The road I’m referring to is the one we’re on, as active, positive members of the CF community. I am/we are standing on the shoulders of giants who figured this stuff out a while ago: that you can not only live well with CF but actually improve your health as you get older to reverse the stupidity or bad/unknown medicine of the past. I’m not the first, nor the last to realize this and mobilize people into changing the standard of thinking about cystic fibrosis, but we as a group are the first to do so because there once was no hope. We are a collection of just a couple of generations of people who have a chance to have a different relationship with CF than any before us.

Hope for the hopeless

There was a day when your child simply died after a few days or months. If they were older, they were undernourished. If they were a newborn and an autopsy was performed, they were full of crap. The next advancement was being somewhat nourished for a time, but succumbing to pulmonary failure by 7 or so. Today, given the right genes, medicine, and attitude, we have CFers in their 50s that still haven’t needed a transplant.

While not true for everyone, there is a growing trend of seeing people into their 30s, 40s, and beyond before their lungs cry out that they have given out. I see moms of teens and toddlers and infants receiving information and hope that they didn’t have anywhere between the time they heard the words, “your child has cystic fibrosis” until their eyes were opened to what is happening in the CF Underground.


Many of us are living more or less (and some, completely) normal lives with spouses, kids, high-powered jobs, graduate degrees, prospering businesses, houses, BMWs – things absolutely unimaginable just two decades ago except the few with certain mutations or non-exposure to certain bugs that ail so many of us.


This movement and mindset ties into my recent discussion about CF making you bitter or better. I didn’t do a good job wrapping that up by saying that CF makes us all bitter at some point and to varying degrees, but it is the extent which we become better or allow ourselves to become better despite CF that adds such variation to our community. How long will you stay bitter because you have CF or a loved one has CF?

Make today the day you see the potential to seize the day. I know a number of moms that have changed their outlook by joining in the positive side of the community and staying away from the naysayers and downtrodden who permeate social networks in greater numbers than the advocates for a better life.

It’s like Star Wars and the dark side:

But beware of the dark side. Anger…fear…aggression. The dark side of the Force are they. Easily they flow, quick to join you in a fight.

Beware the dark side. It is your default position, even if you are as “annoyingly optimistic” as I am, as Beautiful sometimes says. When I get mentally lazy, I shift to the dark side of thinking about my health and future. It takes a certain intestinal fortitude and often a lot of support from others to come back to the right thinking that will promote health.


I fight the dark side every month or two for a day at a time. What’s your cycle for joining the dark side?


  1. I don’t know what the darkside looks like. Maybe that will change one of these days, but I’ve never seen anyone else affect their present (or change their past) while in the darkside. I’m all about moving the ball forward, and for myself, that can only be done through accountability, challenging myself and staying positive.

    Good blog.

    • That’s why Yoda warns about going to the dark side: “If once you start down
      the dark path, forever will it dominate your destiny, consume you it will,
      as it did Obi-Wan’s apprentice.” You sure do stay challenged, I’ll grant you
      that in a second. Keep it up.

  2. Kristi Bowers says

    I first battle it when our routine has been pretty normal and then CF steps in and he gets sick…it is VERY hard at first because I get used to him being “ok”. I REALLY have to check myself. I usually get sad and feel sorry for myself and us for about a day. But then I usually go into “momma mode” and pick myself up and do what needs to be done to get better. Whenever Kaleb isn’t able to do something because of his CF I also have a moment on “the dark side”. But I have recently adjusted my mindset on that so that I don’t think of “can’ts” but instead just as obstacles and then we figure out how to do things IN SPITE of his CF. Hope this makes sense!! Great blog! Thanks for your role in “changing the standard of thinking”, at least in me!

    • Made perfect sense to me, thanks. There is a certain satisfaction in doing
      thing in spite of or despite having CF, isn’t there? “You told me I
      couldn’t, but I did it” feels so good.

  3. Aunt Sandi says

    There are times when down has really helped me recognize and appreciate up so much. Careful not to get sucked into that whirling vortex. It can be a very difficult to lose yourself there, even for a short time with all the support in the world.

    • Indeed. I think that’s why there is such a distinct chasm in the CF
      community (and probably every other health-related community like diabetes,
      cancer, etc.). Some are influenced by their family or friends and get into a
      downward spiral because it is so clearly the default setting for the human
      condition. Despair is only overcome by those with hope. People put their
      hope and faith in different things, but it creates the same result in the
      brain, though pretty extreme results for eternity. /grin

  4. My sister and brother both have cystic fibrosis and they both have troubles trying to gain weight,especially my sister…she is 19. I was wondering if anyone has any tips on what she could eat to gain weight,any ideas? Please email me at [e-mail address removed]. Thank you!

    • Thanks for commenting, Jessica. I’m slammed with projects, but feel free to
      help yourself to the search bar and the Tips category in the sidebar to see
      everything I’ve written on the subject including the article 3 before this
      one entitled “*10 Basics of Gaining Weight With Cystic