Wednesday, March 10, 2010

Positive Charge: Blogger Challenge

Okay, so apparently once I get on a roll I don't like to stop. I'm feeling good (well, feeling better) and it's translating into a sort of...blogtasticness? Um, yeah, anyway. You'll have to forgive if these posts are maybe a bit more random than usual. There's just so much bouncing around in my head right now, and I feel like it's as good as any a time to get it all out there. So with all that said, I have a new topic and I would totally like your input, sweet readers:

What does "positivity" mean to you in the context of CF, or life in general?

I feel like "positive attitude," "positivity," and other words get thrown around a lot by really amazing and well-meaning people, but I'm not sure everyone's version of what it means to be "be positive" is really the same. I mean, I highly doubt many people see themselves as having a "negative attitude" for example -- they may see themselves as being "realistic" or even "honest," and in turn they may think that others are unduly cheerful or even "in denial." And I guess this all got me thinking, because is one person's positive thinking another person's denial? Or is my realism your negativity?

And even more vexing, is our "hope" or "positivity" threatened by stories that don't fit into our paradigm? Or is our sense of self and worth degraded when others do better than we have with the same disease?

Honestly, I'm not trying to start a turf war here. I'm asking these questions because they seem to come up more often than I might expect, and now that I've hit transplant stage it's like they're screaming at me from the page, whether I like it or not. To use an example of two blogs I very much admire by two women who inspire me daily but who are dealing with two VERY different cases of CF: where does "I have CF, So What?" end and "Not so Bright and Shiny" begin? Because each of these are very real, honest, and open depictions of cystic fibrosis, and I don't think anyone in their right mind could argue with the notion that both of these women embrace life and live it to the fullest with grace, wisdom, and style. And more than that, they're both working very hard to stay positive in the face of some pretty daunting obstacles -- but do their versions of "positivity" differ, to some degree? Well, maybe. Probably.

To put this in a personal context, I have to admit that I often feel the need to "champion" the transplant CF community (which is, of course, not to say that I am the best or even an adequate representative for my fellow cystics in waiting -- it's just that I happen to be involved in a lot of discussions and therefore have the chance to speak up). I want people to understand that transplant is an option, that it's not the end of the world, that it's okay if you get sick and you're honestly doing the best you can, that there's no guilt in having cystic fibrosis or being overwhelmed once in a while. And more than that I want to emphasize that there is no one approach to CF -- I have known so many people who blow me away with their own unique brand of grace and strength in the face of this disease, having nothing to do with lung function or life expectancy or whatever other number you might be tempted to zoom in on. And when I first was told that I needed a transplant, I quite frankly considered it my mission to let everyone know that sometimes, darn it, you just need new lungs.

Fast forward almost two years from my initial meeting with the transplant team (sidenote: holy WOW, are you kidding me?? TWO YEARS??): not a whole lot has changed except that 1) I'm now actively listed for transplant, and 2) I've toned it down a bit. And, no, the latter is not because I no longer believe that people should know more about transplant and that transplanted CFers should be visible inside the community. It's more because I've become aware that it's not my job to force my view of CF on other people. Because if I'm really, totally, brutally honest I have to admit that my speaking up was largely for me -- I wanted people to know that I was trying, was living, was exercising and doing treatments, and still needed a transplant. And yet, somehow, as I've become a little more secure in both my disease progression and my own role in managing my CF, I've felt less and less need to justify my position (although obviously the impulse isn't totally dead, as proved by this blog). So now -- while I still find myself asserting transplant as a possibility, and a positive step for people with severe CF -- I also like to think I've mellowed out to the point where I can read statements like "you CAN control this disease" and not feel somehow attacked. I realize the person is saying that there are things you can do to improve your chances, and my response has moved from "must. assert. self." to more of a "here's to trying!"

But it's still confusing sometimes. How do we, as a community, strike a balance between honoring all CFers in their fights against this disease without judgment and encouraging people to believe they can actually have an impact when it comes to their personal health? Where is that line between guilt and empowerment? How do we showcase hope without pushing the sickest among us (those who need support more than ever) to the sidelines? And, to get back to the original train of thought for this post, where does denial end and healthy positivity begin?

Can we get to a point where we can say "yes, I got off the transplant list and I'm darn proud, but I understand that others might not, and that doesn't mean they're doing something wrong"? Can we honestly shrug our shoulders and say "hey, I need a transplant and I know in my heart that I did the best I could, but that doesn't mean I don't admire the other guy who managed to get off the list"?

And since we're all in this together against a disease that seems to attack each one of us differently, is there a way to reconcile our individual stories with respect and acknowledgment for the stories of others, even when they seem to contradict our own experience?

Well, obviously I don't have the answer, which means it's time to pass the buck. And of course I thought I'd put it to you guys, since you're basically the best wealth of information any girl could ever ask for. Post your thoughts here in the comments or write your own blog and let us know where we can find it. In other words:

Let's get real.
Let's be honest.
Let's start a conversation.
And, of course, let's be positive.


  1. this is one I will have to think about and write my own blog look for it in a few days :)

  2. I plan to respond to this blog sooner rather than later, but I know that it's going to take me a while. I tend to either offend people or put my foot in my mouth when it comes to this topic. I will try to craft a well thought out and sincere response soon though as I feel that this is a very important topic.

    I posted part of this blog on RSR and I hope that it brings some people by :)

    GREAT blog!


  3. I find your posting fascinating. As a mom to a toddler with CF, I always find the stories of CFers my age to be the most interesting. I found your blog through another & will continue to follow you - thank you so much for this post. It makes me realize how the optimistic viewpoint I have about my daughter's CF can be so easily twisted to think she's better than other kids with CF or somehow receives better treatment. You've opened my eyes tonight when they were pretty sleepy! =) God bless!

  4. I would also love to comment. . . and would think it would be great as a blog on my own blog as well. You have given us all so much to work with on this post!

  5. Great blog - it's reminded me of a few things and I'll be posting on my blog soon...

    I love your writing, and so do lots of my friends in the UK who follow my blog.


  6. Great blog post! You hit on a lot of things that I've thought about over the years. I have found this to be an isolating illness because of these very things, because the spectrum of the illness is so wide. If you're doing well, it sometimes seems the people who aren't sort of resent you, and on the flip side it frightens you to see the people who aren't doing well. And if you're the one not doing well then it's you who give the mental glares at the ones that are. (Keep in mind that I'm a mom of a CFer, not a CFer myself, so I am standing at a different viewpoint than you). It seems hard to just be close to someone else who's going through this without feeling judged or without being judgemental. But the fact really is, that we don't actually have control over anything. We have influence, and we can influence the hell out of this thing, but in the end, it's just not our call. It's like that for everyone with everything, not just CF. Things happen, stuff goes wrong, and luck plays a part. Is that a negative view, or a real one? Am I simply not a positive person? I have absolutely no idea. But I do know that I'm ready to fight, and I always will be, and that even if I'm not as positive as the next person, I'd never, ever give up hope.

  7. You really got me thinking with this one. I might have to take some time to contemplate this one. But right off I have to say that the line between being positive and fantasizing. I think people need to somehow find a balance between the two. There's is nothing wrong with hoping for a positive outcome. But on the other hand you have to understand that it might not happen. We'd be nowhere without hope, so we can't give it up. But if its taken too far you might just be disappointed.

  8. Ooops, my brain was going faster than my fingers again. I meant to say that the line between being positive and fantasizing is a fine one!

  9. Thanks for this both very insightful and very thought-provoking entry... I found it through Ronnie, and plan to contemplate this one, let it "stew" for a little while. Once I do, I'll post you the response... Wow. Thanks again! :)

  10. Thank you very much for this insightful and thought provoking blog... Found it through Ronnie, and as he said, I'm going to contemplate this a little bit more, then come up with a response that is both well-though out and personal. Wow... Thanks again! :)

  11. Ugh. New to commenting on this blog sit... Lost the first one, or so I thought. Sorry for the abundance of comments :/

  12. Piper, you are a beautiful writer and obviously a very thoughtful and beautiful person. Denial is a very comfortable place for me as a mother of a CFer but have found that as my son gets older (he will be 10 soon)that denial really doesn't do either one of us any favors. We face this reality together, take it one day at a time and just simply do our best. Some days we do better than others. We, as a family, travel between denial, positive thinking, and brutal reality sometimes in quick succession. I am just thankful that we are not alone on this ride and have other thoughtful people such as yourself out there that understand. Thank you for this post!

  13. Piper...

    Thank you so much for sharing your thoughts. It definitely puts it all in perspective. I think your words and thought process is amazing and very well written. I myself received a lung transplant 11 months ago and know exactly what you are talking about when you talk about shouting to the world about getting a transplant and what you do every day to control CF...I do the same thing and need to really plan my words out when I do this...I know I have offended people, made myself out to be a hero at times and for that I regret. Thank you for opening my eyes and is appreciated more than you will ever know. Take Care!!! Jane

  14. very well said piper! i love this post. i have thought the same thing before... and have also asserted myself in defense of needing a transplant in spite of excellent care. it really hits home for me.

    to me positivity and hope are two different things. i don't think positivity is always necessary (especially when we feel like crap)... but hope is always necessary....
    i don't know-- like you said everyone's definitions are different.

    what an excellent thought provoking post!

  15. Great post, Piper. I think I, like you, tended to speak out more because, despite my compliance with treatment/medications/exercise, my lung function still decreased to the point where I receive my transplant two years ago. Honesty with respect to point of view is always helpful, for both those with and without CF.

  16. Piper, You have certainly made us all think and however this is something l have thought a lot about myself in coming to the decision to be actively listed. I initially thought that going on the list and having a transplant was a bad thing and had to justify to myself and other people why l had to given that l was so well until l was 20. (i am now 37) so my health has really dropped over the last 17 years, however l have decided to look at it another way. I have a tool box and in my tool box l have many different tools at my disposal. Tablets, drugs, physio, oxygen, transplant. This is just another tool in my tool box to be used to help me see my daughter grow and spend another 13 years with my beautiful wife.

  17. This got me thinking Piper. It reminded me of a blog I posted a little while back, about doing your best to try to stay healthy and not just hoping to get better, but how in the end even trying your hardest might not even work.

    To be honest, I always felt like I was in a difficult situation when I talk about being healthy with CF when others (like yourself) are listed for transplant even though they have done the same things as I have. Sometimes I feel like I'm being offensive when I'm only trying to inspire. I don't understand why this disease affects some differently than others, and maybe I never will. But I know that I have respect for every CFer no matter what stage of struggle they go through. I plan to write a blog about this as well, but like Ronnie, I need time to think about it.

  18. i want to take the time to answer this question and posting thoroughly - but tonight on CL someone posted this quote:

    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow." ~ Mary Anne Radmacher

    I think this quote speaks to the issue.

  19. Hope for the best, prepare for the worst. Of course one has to be careful that preparations (mental mostly) don't overwhelm the hope, but also visa versa. For me the line between positivity and realism has more to do with life differentials (how / if things are changing in my life) rather than the status-quo.

    For example if I'm feeling lousy and find myself not keeping up with my volunteer activities, not able to find time to feel well enough to engage in my artistic endeavors, then I get very frustrated and negativity seems to run the show. But that negativity often breeds action in me (like taking positive steps to correct the situation). And then the slow incremental progress helps me get a positive attitude going because the trend is reversed... I feel a bit better, maybe get in some time to make beads, maybe take care of some of my extra activities, get caught up with work stuff. Then that is positive.

    So for me the line between the two really has to do with the slope of the curve. :-) Sorry, my geeky engineering side is slipping out here. ;)

  20. ok here's my response

    i'm not sure if I went off topic but it got me thinking along the same lines... :)

  21. Piper, I love this post. Its good because it exemplifies why I love blogging and connecting with CFers (and CF parents/caregivers, all those affected)....

    On the one hand we can relate to each other because we are alike and, on the other hand, each story like each person is unique. I would like to comment more on this in my blog permitting it will be soon.

    My gut response is that I like to hear all the perspectives, all the stories and find the value in each. In a way, I don't think we can go wrong if we're all honest about where we are. In my opinion, life is a process of learning, growing, developing....
    CF is a unique part of that process we share.

    More on the blog:

    Thanks, girl!

  22. Okay I said I would read everyone elses blog about positivity until I finished my own... So now that I have I am excited to read the read... Thanks for the challenge.... I am kinda nervous..

  23. Love it Piper! Just posted on my blog, my own view on how I try to be realistic AND positive, and how I will continue to raise Lucy in the future. Thanks for the made me think about my own parenting tactics! :)

  24. Hi Piper,
    I have been reading your blog since my diagnosis (9/1/2009)-- I am 34. People like you and Ronnie (truly the only blogs i follow religiously (or spiritually)--
    I was diagnosed at 34. I am a currently inactive (nicer word than no longer) elite runner and triathlete. My brother was diagnosed at birth.
    I essentially was doing my own CPT by running. Life circumstances and an accident happened that prevented my from running at the calibre I had and I began to get frequent and serious pulmonary infections. They tested me for Cf and here I am....

    Prior to the dx I was the most positive, upbeat, go with the flow kind of person.... Since the dx and what goes along with it (PICC's, Hospital Admissions, breathing treatments, enzymes etc) I have struggled.

    I do feel and have continually been very positive. I do the treatments and attempt running when I can. You have been an incredibly powerful person to me, as has Ronnie... I pray every day for your lungs and thank god that you are here to help people like me with your words and insights.
    Be well.