Choosing Awareness

May is Cystic Fibrosis Awareness Month.

Due to the timing of my recent hospitalization and course of IV's, I've inadvertently been "advertising" the in's-and-out's of at least this one facet of CF life on Facebook and Twitter already. In the midst of minor health blips like this, I find social media both a convenient way to keep beaucoup people in the loop when I go MIA and a fun way to fend off the inevitable tedium of  hospital "hurry-up-and-wait". After the dust has settled, however, I always have a little creeping self-doubt that I come across as whiny, wimpy and ungrateful, rather than cheeky, sarcastic and bored, when I review the scrolls of "and now I'm doing THIS!" updates related to my health that have undoubtedly caused a few people to hide me from their newsfeeds (though, in my defense, I don't play Farmville).  

So I feel a little weird about doing my "Maydays of CF" blog posts as originally planned. I'll post a few in the days and weeks to come, partly because I figure if I haven't been hidden, or defriended, or unfollowed by now, folks must at least kinda sorta care and/or wonder a little bit about how all of this "CF stuff" goes down, and partly because I'm really trying to challenge myself regarding my fears and insecurities about stepping up as a true and consistent "face of CF" (more on that later). 

But for now, there is one part of "Cystic Fibrosis Awareness" that I feel I must address, personally. One of the battle cries of CF Awareness (or that of any chronic disease, or policy problem, or other unflattering human situation) is that "for those with CF, awareness is every day" or "for CF patients, CF Awareness isn't limited to just one month." It's poignant, and sound-bite short and catchy, and makes an excellent point. I agree with the sentiment 100%. However, though I will continue to beat my drum about the very real, very significant, and largely ignored psychosocial aspects of living with CF (and chronic illness/disability), I want to take a just a minute here on my little corner of the interwebs to shine a light on - and express my infinite gratitude for - another largely ignored, yet bittersweet CF population. 

Those who do have a choice, and who choose to be "CF Aware". We patients, as I've mentioned, do not have a choice. CF is what it is, and it's not going anywhere. If we are alive, we are also CF, at least in part. It's ugly, it's painful - but it's simple. In this blitz of "CF Awareness" - of statistics, and facts, and soundbites, and diagnosis stories, and "day in the life" profiles, and "the pills I take every day" photos - I also want to turn awareness on its head; to focus not just on the struggles and complexities of the patients, but of those who surround the patients.  Those who have the complicated and undoubtedly tempting option of turning their backs - technically, on us, but truly, on the helplessness and fear and frustration and guilt that are part and parcel of their precarious position as very-close-but-not-inside CF - and choose not to do so. 

The friends who gracefully deal with last-minute postponements and cancellations due to the unpredictability of our symptoms; the families who step up and help out when need be - or equally helpful, step back and give us space despite their own desires to hover close; the teachers who  not only extend deadlines and email outlines, but send a quick note just to see how we're feeling; the employers who, while technically, legally prohibited from firing us because of CF, go beyond what's merely required to what's human, and allow us to remain in jobs we love (or even just need) and give us the flexibility to perform to our best, even when it's not convenient or cost-effective. 

And yes, the physicians and nurses and pharmacists and lab techs who choose to fight this disease with us - who answer our emails late at night and on the weekends, who choose to remain on "the CF floor" for years despite the literal and emotional difficulty of the work, who wink and nod as they hand us stockpiles of drug samples or expensive adhesives, who remember our allergies and preferences and fears, who keep our atypical medicines in stock for quick refills and place overnight orders for the new ones, who aren't offended when we point to specific veins we want used or double check the labels on our delivered medications, and who generally remain invested the care of a patient population that is medically, pharmacologically, intellectually and psychologically challenging to treat (but never cure), in all the best and worst ways. 

So yes. Let's all please, please, please raise awareness of not only what CF is, but why it's so important to cure. Let's be vulnerable to the point of discomfort in exposing the many ways CF affects our lives as patients. But as we ask our friends and families to help us in this fight  against both the illness itself and the ignorance surrounding it, let's also take a moment to thank them for choosing awareness, for choosing CF, for choosing us.