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Faith & Cystic Fibrosis: Observations & Discussion

Joy and PeaceI don’t know if you’ve noticed in your cystic fibrosis blog-hopping, but it seems like there is a disproportionately higher number of CFers proclaiming to be born-again Christians than the general population. However, those who are more on the agnostic or atheist end of the spectrum seem to have a disproportionately higher angst in their writing than, say a non-Christian business blogger. I’ve seen all lower-case drivel consisting of nothing but incoherent, disjointed complaining and anger at life in general. Living itself is a miserable prospect to some.

A fitting post for Sunday

I thought this would be a good topic for the day, since my premise is that most of you will be reading this before or after church, if you’re able, and can get the juices and discussion flowing on what is a normally slow blogging day.

It’s an interesting discussion of nature vs. nurture, I think. Are we more prone to think of our future – our eternity – than most or were we raised by parents who had to have something/someone to lean on during our struggles if they weren’t already living a faith-based life? Those who are on the other side of the spectrum come from an obvious, and understandable, “if there was a God, then this wouldn’t happen – I wouldn’t have CF – there wouldn’t be suffering” standpoint. We’re not here to get into a purely theological debate (though Fatboy has done his studying) on the existence topic, but rather stay on an observational plane as to the percentage of Christian CF bloggers vs. non-Christian/agnostic CF bloggers and why I think it’s so high. (Two great resources are: The Case for Christ: A Journalist’s Personal Investigation of the Evidence for Jesus and The Case for Faith: A Journalist Investigates the Toughest Objections to Christianity.)

What doesn’t kill you, makes you stronger

… until it weakens you and then kills you. Sure CF sucks. It’s a raw deal. A bad hand from the deck of genes…

… but that only makes us stronger. Every Christian I know has seen tough times; not a one has been immune from suffering because of their faith, but at least they have a solace. That, I believe is a major part in faith in the CF community, but what do you say? Where does your faith come from?


  1. Jesse,
    Looks like your first comment will be from a CF dad, unless someone gets theirs done before I finish this. Back when you were little, very few CFers reached adulthood. Being the parent of a CF child can be a crushing experience. Besides the time demands of all the PD we had to do with Rachel, there were all the meds to keep track of, and I remember one little boy who used to REALLY fight taking his enzymes. The current running under all that was a subtle sense that I was responsible for your disease, even though I'd never heard of it before you were born and passed on the gene in total ignorance. That subconscious feeling of guilt was something that I wasn't really aware of till recently when it dawned on me how it had influenced me in a lot of ways.

    My faith first came from reading the Bible back in high school and continues from seeing God at work in me and in the world around me just as the Bible describes His ways. The first time I tried reading the Bible, it made no sense. Then a friend suggested that I first ask God to help me understand it and then start reading in the New Testament. That revolutionized my life and, I think, made it possible to cope your your illness and Rachel's agony and eventual death.

    But I didn't always cope well. I used to get furious with God because He would not make you guys healthy like I wanted. You well know how impatient I am – you're just like me that way. LOL! One time I totally lost it and put my fist right through the plywood wall of the cheap little rental house we lived in at the time. But my anger at God never came close to making be doubt His existence. I know God can heal you, but He's chosen instead to give us the grace we need to deal with it. Of course, we need to accept that grace and I can't tell you how excited I am to see you accessing it.

    If anyone is wondering why God lets bad things happen to good people, I suggest the book of Romans. Paul makes it quite clear in the 1st 3 chapters that there are no good people. But then he goes on to tell us some wonderful news. And the books you mentioned are excellent.

  2. Cysticgal says

    I don't know. I am Catholic and as such, tend to keep much of my spiritual journey to myself and within my community. As a Catholic, I am a Christian- this doesn't make me immune to feelings of sadness or anger. As a Catholic, I am not immune to the psychological process of grief. As a Catholic, I have doubts that are then recovered by my faith. I don't think it's fair to say that overall the Christian bloggers are up-beat and the non-Christian bloggers are sad and “all lower-case drivel consisting of nothing but incoherent, disjointed complaining and anger at life in general,” as you put it. My blog is often quite negative or sad. I have a goal for my blog to put it all on the table- the good, the bad, the ugly. I want to use my blog as a tool for exploration, not a handbook for how to live. I have received many many emails thanking me for finally putting a voice to people's feelings or fears, saying that expressing these thoughts helps one move on to a clearer perspective, in a way that stifling the fears does not. Does my feelings of sadness and despair at the loss of my godbrother make me less close to Christ? Does my fear of losing my sister mean I am not godly enough? Does my anger when a mother writes to me about something horrible happening to her child make me a bad Christian? Of course not. These feelings and expressions are part of my journey, and I believe that my expression is a gift from God, indeed part of my spiritual responsibility.

    As a Catholic, one of my biggest conflicts of faith came when I was approaching the transplant process. Within my faith, I am not taught to fear death, but in fact be excited and hoping for a new life in heaven. I had trouble combining my desire to live in the earthly world, with my fear of “rejecting” or fear death/ heaven. I wrote about this on my blog and I talked about it with my family and priest. Does those “negative” posts with a lot of emotional, raw content mean I am one of those less-Christian bloggers, even though my posts were about my Christianity? I don't know. I don't think so.

    I think there is a place for every kind of emotion in this world, and when we reject how a person feels, we reject their actual existence. When we ask people to pretend to be joyous when they are struggling, or pretend to be fearless when they are afraid, we are refusing to help them – to be the ones that lift them up.

    That is just my perspective. But of course, as I said, there is a place for all perspectives, and I always enjoy how openly you share yours.

    Much love,
    Cystic Gal Beth Peters

  3. Thanks for your thoughtful reply, CG. No, I don't think painting life as it is for us makes you come across as less godly, as you'll see enough negativity on these pages, too, but there is a balance to be reached to be considered a non-angry blogger, right? I've seen sites where the whole thing is about being mad at the world, so I'm sure you have, too.

    I have the same conflict with transplantation, or at least I did before Beautiful and I got serious, so I know exactly, exactly where you're coming from in that decision process, as they were tossing out that t-word as threats for a couple of years before we got married.

    I guess I'll let this comment clarify that I'm not saying to pretend anything, but to realize that everything has a season. Paul went through several seasons in jail, but found joy in life. Was he happy to be in jail? Certainly not! But he did make the most of it and kept converting the guards who were shackled to him.

  4. I am the father of a little girl with CF. I'm also a Christian. Recently, my faith, as it relates to cystic fibrosis, was challenged. I'm in the Navy and my detailer (closest thing to HR we have) told me that I had to go to this little base in northern Virginia. The closest military CF center was Bethesda Navy Hospital, 75 miles away (90 minutes). I had prayed hard for God to send us anywhere but that base. Still, no matter how much I asked the detailer to reconsider, we were given orders to Virginia. I was angry.

    I didn't blog about it at all and didn't even facebook it much, but I told anyone who wanted to know how angry at God I was. I even started conversations with “This doesn't mean I don't believe in Him…” The fact was that, even in my anger, I understood that God was over my family. That didn't take away my feelings of betrayal, however, like God had walked away from me.

    That was a humbling time period for me. You see, about six weeks ago we learned that those orders had been cancelled. We are leaving for North Chicago in less than two weeks. The CF center we have chosen to go to, at least for now, is a mere 30 minutes away or less, and they have a clinic that is even closer than the main center. the fact is that God knew a long time ago, even as he was testing me, that he had no intention of putting my family that far from support.

    Yet I was hurt, and angry, and I wanted God to know how bad that hurt me. I'm embarrassed by my actions during that time, and have resolved to shut up more and complain less. God is sovereign in my life, whether I want him to be or not.

    Maybe I'm not as angry as others, and maybe I am. But what I do have is hope. I have hope that my daughter will be healthy, that maybe a cure will be found, and if not, that regardless of the outcome and when she dies, I have a chance to be with her again. It is up to me to model the Christ I hope she accepts someday. That is my current task.

    Sorry for the length. Great topic!

  5. Oh!… never apologize for length on a comment, Dan. It's a sign to me that I inspired some thoughtful reflection that needs an outlet. It's humbling as a blogger to receive such long comments today. Thank you for leaving such a long comment.

    I'm so glad you found out such good news for your center situation! PTL! That's even closer than my drive – I can hit Tampa General in 30 minutes if there's no traffic, but it's interstate most of the way, so it's still a haul. I can relate with the feelings of embarrassment over being angry at God after something like that, but that's just part of sanctification, right?

    I've told Beautiful that it almost seems like having CF, God and me have this thing that, even when I'm not doing daily walk time with Him, I still know He's there, like He knows I have enough on my plate and that I am grateful for everything that I have. We're tight like that. We get tighter from time to time, but it's a good feeling.

  6. Dan, I can't imagine how hard it must be to be a military CF parent and be at the whim of your CO. Thanks for serving our country.

    I guess I've likewise had experiences where I got frustrated with God, only to learn that He was testing me and I'd failed the test. It's a slow process (at least for me) but I'm gradually learning to try to be patient and trust Him in those kinds of times because God usually does something spectacular. The times when it seems like God is most distant are usually when He's doing the greatest stuff. But it sure is hard to keep that in mind when you're between a rock & a hard place with no place to go.

    Jesse, thanks for giving us a forum to express these experiences.

  7. Cysticgal says

    I would like this discussion to go further. Would you and the others mind if I referred to it on my blog with a link?

  8. Refer away! I'm only a stickler about the post title being the same and the
    entire content being in two places. It's the Google expert in me that
    doesn't like to have that happen – for either of us.

    I'd be glad to take part on your end of the discussion over there, too.
    There is a lot to say on the subject, especially after watching this video
    starting at 15:00 – <a href=”
    target=”_blank”>Conner's Story.

  9. MiddleAgedLady says

    I'm enjoying this discussion. My faith journey with the Lord is what encouraged me no matter what… eventually. I think faith and feelings are often in conflict. My head and heart know the Truth but my body is saying, “are you sure?”

    I love the honesty of the CF bloggers but have to agree with you, Jesse. I have noted the angst and anger in some and always wish I could reach out, literally, to help them. Acceptance of CF is not easy and doesn't mean giving in to the disease, but I find it restores a balance or spiritual order to my days.

  10. Faith and feelings ARE often in conflict when one is conflicted. When one
    needs comfort, they are in perfect harmony. Thanks for stopping by with more
    thoughts on life as a middle-aged CFer.