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.
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
Want to Contact Me?
Please email me suggestions, thoughts, comments, or criticism. Seriously, I love hearing from you guys!
Send all emails to:
- ► 2013 (30)
- ► 2012 (36)
- ► 2011 (42)
- ▼ March (13)
- ► 2009 (105)
Alternative Medicine Anniversary Antibiotics Anxiety Artwork Attitude Awards/Opportunities Awareness Bacteria Birthday Bronch Career CF Clinic CF Community CF Story CFF Challenge Choices Clot CysticLife Death Diabetes Doctors Donor Bob Drugs Dry Run Education Evaluation Exercise Family Fevers Freematour Frequencer Fun Fundraising Goals Gratitude Great Strides Guest Blog H1N1 Healthcare Heart Hospital ICU Immuno-suppression IVs Lessons Life Listed Loss Marathon Meditation New Year New York Organ Donation Oxygen PFTs Poetry Polymyxin Port Positive Thinking Post-Transplant Prednisone questions rant Recovery Rejection Research Rock CF Sampson Scar Sick Girl Speaks Sickness Side Effects Solvay Cares Stream of Consciousness SVT t-shirts Team Boomer THE Call Therapy Transplant Transplant Clinic Treatments Vertex Waiting Weight Writing