blogger challenge: personal disease perspectives

last week, a CF friend posted a blogger challenge about perceptions of control in CF. the purpose of a blogger challenge is to write about an interesting, charged topic and encourage others to do so as well, thus beginning a blogger dialogue intended to flesh out the issue and invite differing opinions. well, piper, thanks for kicking off such an important conversation. i gladly accept the challenge as i'm (unsurprisingly) very eager to weigh in. if you'd like to participate, you can find instructions at the end of my post.

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we are taught from a young age that hard work pays off. our fate lies in our own hands. if we're willing to put in the time and effort, then success, health and happiness are always within reach. after all, it's the basis of our nation. it's the american dream.

CF offers a lesson in humility. it teaches the power of hard work as well as its limits. it makes clear the tenuousness of control and unpredictability of life. we live on borrowed time. this is true for everyone, but CF makes us realize it earlier than most.

like the young woman whose email to piper inspired this challenge, my fev1 is pretty deplorable and declining even as i'm working my butt off never to miss one pill or one treatment or one proper neb sterilization. its the most painful and disempowering feeling in the world to be on an uphill climb where you keep sliding down no matter how hard you stick your feet in or how badly you want to at least be able to stand still -- just for a moment.

CF's hallmark characteristic, in my eyes, is its ability to fool you into thinking it's controllable with treatment compliance and "healthy" lifestyle choices and them come crashing down on you all at once. it is at that moment that you mourn not only your crumbling health, but your shattered illusion of control.

i don't mean to portray CF pessimistically though. while it doesn't qualify as completely controllable by any means, any statistician will tell you that a lack of causality doesn't negate the potential for some kind of influential relationship between two variables. in other words, the fact that hard work can't guarantee control over CF doesn't mean it can't help. there's no doubt that lots of factors come into play in the progression of CF and two people with identical situations, mutations, lifestyles, etc. can experience very different courses of the disease, but i think it's safe to say that hard work and compliance definitely never hurt and they have the potential to really help.

i think this nuanced view of the relationship between hard work and control is really important for avoiding the all-or-nothing trap of CF care that piper described. it's the trap where you either (a) hold yourself to the highest standards of care under the illusion that your hard work leads to total control over CF; or (b) ditch all efforts to slow the progression because you believe CF is always in control and nothing you can do will really help at all.

the struggle between (a) and (b) came to a head in my early college years. i remember the absolute agony of watching powerlessly as my lung function steadily declined each and every visit. i would end up doing upwards of 10 pft trials (as opposed to the recommended 3) in the hopes of increasing my fev1 by 1 or 2%. it would leave me breathless, dizzy and painfully discouraged because, despite my hardest efforts, i often couldn't pull  my numbers back up. it was an awful, tangible representation of CF's inevitable progression and it shattered my heart to watch.

i developed severe anxiety around visits and pfts in particular. when i switched to the adult center in my early twenties, i finally decided to take a drastic new measure. knowing that i always tried my hardest in the pft lab and with my CF care in everyday life, it seemed unproductive -- maybe even masochistic -- to keep obsessing over worsening numbers that were, literally, crushing my spirit.

i decided to stop looking at my pft numbers.

it was a bold move. many people disapproved, but i was bolstered by the support of my mom and, admirably, the support of my new doctor who really got me. he understood that at that point, focusing on my numbers was doing more harm than good and he felt comfortable that my health wouldn't suffer as long as we still discussed overall trends.

i mention this example because it shows the delicate balance between (obsessive) control and letting go that CF forces us to constantly negotiate. i was working as hard as i could, i was doing as much as possible, but it wasn't enough. nothing was enough. at that time, CF proved too powerful an opponent for any efforts on my end to successfully combat. i had to let go to preserve my sanity.

and it worked.

rid of my obsessiveness around pfts and fear of unavoidable decline, clinic appointments because less anxiety-inducing. pfts became much less emotionally strenuous, not because i wasn't trying as hard -- i was, just as hard, but i finally accepted that the progression of my CF at that time was beyond my control. it wasn't my fault and there wasn't anything else i could do except swallow it, keep working hard and charge forward with my spirit intact.

now, almost a decade later, i'm at a different point in life. my lung function is a hell of a lot lower and i'd be lying if i didn't admit to sometimes staring in disbelief at my dismal numbers, but it isn't the same as it used to be. when my numbers dip down, it no longer has the same sting. it doesn't feel as personal or drenched in guilt and failure.

i often tell myself that all i can do is the best i can do. it's not that i don't get frustrated with my seemingly inevitable downward trend, but i try to reframe my self-judgment. life is about effort, not outcomes. it's about building character, pursuing interests and living with no regrets. it's about doing the best you can with what you have and making sure to nurture all aspects of your being. we juggle a lot -- emotionally and physically -- and it's important to always factor happiness and sanity into the equation. it's not meant as a loophole for excuses, but instead as an acknowledgement that our emotional wellbeing is a big part of our personhood and overall health and, as such, deserves a seat at the head of the table of life choices.

CF sucks. it's a huge, omnipotent, hideous beast. it forces us to face major life predicaments way too early. from a developmental perspective, we're not ready for it. we're not supposed to be ready for it. thrown into a tornado of a situation without the life skills to properly deal, we're forced to scrabble. we have to piecemeal together the coping skills that most people acquire over the course of a long life. questioning and changing and growing are to be expected. there's no place for judgment in such unnatural and extraordinary situations. the best thing health care teams, families, friends and especially the CF community can do to help is embrace us, educate us, listen hard, try to understand where we are, empower us to keep moving forward doing the best we can and, mostly, keep standing by our side through it all.

the truth is that the need for this kind of acceptance is universal. there are no guarantees, no promises of tomorrows or next weeks or next years -- for anyone. life is a balancing act between paddling your hardest under water and also knowing when it's time to let go. this is true for people with CF, for sure, but it's also true for everyone. 

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1. write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. this could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. or, you know, whatever you want to write about really. it's your blog.


2. comment below with a link to your blog so that all of us can read your response. you do not need to link to my blog in your answer. if you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. let's see if we can get this one going as much as with past challenges.

4. if you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends and loved ones.