It's All I've Got - It's My Claim to Fame

While it's not yet all sunshine, rainbows and unicorns in my 10-day forecast, the stagnant, El Nino of a dark raincloud that has been the last few months in my brain seems to have been pushed along and replaced by a calm, resigned, and manageable few-clouds-and-temperate state, if you can navigate all those 3rd grade weather metaphors :o) 

Anyone who knows me well will find my recent strong identification with music to be more than a little ironic, as I am an underwhelmingly music-y person, and usually just listen to NPR in the car (don't hate, I used to have a long commute and it woke my brain up before class, and now keeps me awake driving back and forth from north-of-charlotte to UNC. And really, who doesn't love Science Friday?! but I digress). However, as some of you may recall, there was a relatively popular show on during the 90's called "Ally McBeal", in which (among other things) the main character, as well as several others, had personal theme songs that ran through her head. If I ever had such a theme song, this would be it:

I Don't Ever Give Up - Patty Griffin

I'm no kid

In a kid's game

Did what I did

Got no one to blame

But I don't give up,

No, I don't ever give up...

It's all I've got, 

It's my claim to fame

I'm no fighter, 

but I'm fightin'...

This whole world seems

uninviting

But I don't give up,

No I don't ever give up

I fall down sometimes,

Sometimes I come back flyin

Liars are lying

Airplanes are flying

Love isn't here,

Love isnt here,

But it's somewhere

You turn to 

forget me

but something 

Won't let me

Love isn't here

Love isn't here 

But it's somewhere

I'm not clean

I'm not washed up

This dream

I don't ever give up

I don't ever give up

I don't ever give up

No, I don't ever give up

No, I don't ever give up,

No I don't ever give up,

I don't ever give up.

I love pretty much every line of this song. Hopefully this doesn't get too freshman-lit-poetry-analysis on you, but I want to explain, in case it seems just as dark and twisty as my last lyrical posting. 

The first verse, where she sings, "I'm no kid, in a kid's game" represents how I feel about life in general, but particularly lately, as it seems everyone is telling me to slow down and enjoy my twenties, that your twenties are about relaxing and having fun and finding yourself...as if I'm guaranteed time to make an impact on the world, and make my life count for something, in my 30's, 40's or 50's, or as if I'm guaranteed even the rest of my twenties with any near-certain degree of probability. And also, given that I "did what I did, [and I've] got no one to blame," I have to own that had I made certain choices differently, those odds might be better; had I made certain choices differently in an opposite direction, I may not be as healthy, but I might have had a richer *quality* of life at this point. But, I "did what I did", and can't change it, so here I am, with what I have, the majority of which I am and should be immensely grateful for, and I can only control what I "do" from here on out, and what kind of "blame" I'll be shouldering later.

The second verse, where she sings, "I'm no fighter, but I'm fightin", sums up beautifully how I feel about people who try to make me a hero for simply playing the cards I was dealt every day. There's a really cool guy in the online CF community I'm a part of who has worded it pretty well; he essentially says that heroes are people who CHOOSE to do something heroic; we didn't CHOOSE to have Cystic Fibrosis, and most everybody I know who's really had to face this disease head-on would happily hand over their "hero" crown  yesterday if it meant they'd be CF-free and healthy. To a relatively new graduate with an expensive, progressive, and unpredictable chronic illness not of their own making, the world can, indeed, seem "uninviting" at times. Not in a cruel way, but simply in the fact that, in part because of the way our society operates (and healthcare system, but that's for another day), it can be an uphill battle just to create opportunities for yourself to even start to reach your God-given potential, and some days, simply knowing that there are people who draw inspiration from watching your climb isn't enough to justify the fact that it doesn't have to be as hard as it sometimes can be. I didn't CHOOSE CF as my opponent; I would much rather have taken on Rush Limbaugh. But I was thrown in the ring with CF, not Rush, and now that I'm here, I guess I'll fight like hell because I'm not ready to face the alternative. 

Then she sings, "Liars are lying, airplanes are flying", which, to me anyway, is just another way of saying, Yes, shit happens, but the world keeps turning as it always has, shit's happening to everybody, and you can only roll around in what's happened to you so long before you end up behind and alone. Followed up with, "Love isn't here...but it's somewhere", for me, that's not some mopey, "waannngghhh, nobody loves me, everybody hates me, guess I'll go eat worms" lyric, so much as "So things are hard and lonely, here, now...but there is Love out there to be found -whether that be romatic love, the love of a friend, or even just self-love and acceptance" - you just won't find it if you let yourself stay stuck here. 

The last bit, "I'm not clean, I'm not washed up" just seems to symbolize a sort of resigned-but-peaceful, take-me-as-I-am attitude, because I've got bigger fish to fry these days than looking pretty while I do it. Certainly relateable during home IVs, when simply getting presentable can be quite the challenge, or in the hospital, where at least I feel grungy and blah pretty much the whole time I'm there - thus the painted-toe mandate I maintain :) But the double-meaning of the "I'm not washed up", as both "I'm not all primped and perfect, I'm just showing up and that's enough" AND as "I'm not done doing what I'm here to do, and you can not count me out yet" is probably the best part of that...part, for me.

Obviously, the chorus could be enough for any CFer, and that's the main reason I decided to go ahead and post this tonight. Way too many people are having to fight way too hard right now, some simply to survive the night, others to keep taking baby steps back toward health and normalcy, and others to find meaning in a life that seems otherwise stripped of it, or peace in the face of a scary and unpredictable road ahead. We may never make as much money as we would have healthy and free (or maybe we will!). We may never earn the titles we would have if we could have pulled the late nights and early mornings that our peers did climbing the same ladder (or maybe we will!) Shoot, we may not be as standardly hot and sexy as we would have been without the barrel-chests, ET digits, dark circles and slasher scars bequeathed to us by dear old CF - but maybe what all of these odd imperfections represent make us deeper, more intentional people than we might have been as our otherwise hot and sexy selves. Or perhaps getting stuck with the CF gene somehow cosmically spared us from a few of the more superficial genetic bullets we've dodged, and without CF we might have been healthy but putrid configurations of all those *other* recessive genes - come on - every family has at least one :) We'll never know.

The point is, we may never acquire all (or even any) of the external, resume-friendly validations of success and achievement. But we fight. We never give up. And when everything - our careers, our money, our pride and independence, our sense of who we are outside of vessels for disease - seems to fall by the wayside, we will always have tenacity. We always come back for one more round, and we never go down without a fight. It's all we've got - and it's our claim to fame.