Lie to Me, Tell Me Everything Is Alright*

My apologies for the even-for-me bare posting around here, lately. Grad school has (obviously) started, and most of my increasingly elusive free time is used airing out my brain with as vapid an activity as can be found, rather than further pontificating and risking hemorrhage, insanity, or both. 

Or otherwise pretending I'm fine. healthy. normal. 

Except, I'm not. And, at least for now, I'm still allowed to forget that from time to time. 

See, I haven't needed IV antibiotics since mid-March. I haven't gone that long between IV's in over six years. I went the full three months between CF checkups for the first time in...I honestly couldn't tell you how long. My lung function when I started grad school was higher than when I graduated high school. 

And yet.

CF never goes away - we all know this. It had evolved into such a definitive, inescapable aspect of every part of my life - both the pragmatic, such as day to day plans, and drinking habits, and dread of spontaneous travel, and perceived career options and limitations - as well as the philosophical - my sense of self, my concept of "future", my concept of purpose, my orientation towards relationships. 

And then, for a while, it didn't. And I got used to it. I became, for a minute, the woman I always envisioned I'd be growing up, before CF was more than a frame around the picture. I was feisty. I was energetic. I was spontaneous. I was dancing around the edge of adventurous. Just like I always was. Dare I say, I was starting to feel sexy, to own my body for its own normal, human, ornamental sake, and not merely as a machine to be monitored or a valuable source of experimental data. I drank a little too much and ate a little too much and talked a little too much and spent too much and everything-ed a little too much. Just like I always thought I would. I moved to a new city in a new state where I knew no one. I flew to D.C. completely alone, medical paraphernalia in tow, to present research in which I felt little confidence to a roomful of experts who live, breathe, and eat the material, and held my own. Just like I always hoped I could.

And then I couldn't. Then, I found myself hiding out in my hotel room, drinking overpriced ginger ale and eating over-sized Swedish fish in my pajamas; exhausted and sore from all the traipsing about in heels, short of breath and lungs bleeding from general misuse and abuse and stretching my already-generous body past its limits, largely in the name of vanity and pride. Of course I can keep up with you tall men in flats on this steep walk to and from dinner! Of course I can keep drinking with the rest of you! Of course I can go shopping all afternoon in Georgetown, in heels! Why, I'm just like you, you see?

Except I'm not. Which is why I'm writing this in between infusions, on day 10 of 14 of home IV antibiotics. Which is why I had to summon a new friend to stay with an already-upset Cooper while another new friend accompanied me to the ER last Saturday, in search of a diagnosis and relief from stabbing pleural pain. Which is why my Uncle stayed up half the night worried and then drove two hours to stay with me once I was stabilized, while my friend went home to take a nap before getting up the next day to read a 600-page book for class. Which is why my parents can't take a quick trip to Boston and back without concern that they'll return in time to swap luggage and drive south to tend to their oh-so-sexy, oh-so-independent, oh-so-together twenty-something daughter, whose illness had tricked her - had tricked them all - into thinking that maybe, just maybe, this new-old "her" could be the new-old normal. 

Which is why I'm so, so, grateful to have had these six months to know that the "me" I always thought I would grow up to be is still there - that I'm still the same girl at the core who strutted around in a tutu, batman shirt and tiara and boots with an "I dressed myself today" button squarely pinned to her shoulder; who rode the bus to her first day of kindergarten and sat in the back with the third graders; who manipulated her fellow only-child neighbor into yet another game of "house" instead of "Xmen" by threatening him with an afternoon of loneliness should she not get her way...then agreed to play "Xmen" anyway, having proven she didn't have to; the girl who "mouthed off" at her Bible teacher (I swear I was just asking questions) and just wore gold pleather pants to get around a "skirt length" rule for a Christmas party.

Having that time - having those opportunities - has made it that much more painful to face the reality of times like these - when I feel like the girl who'll always have to depend on someone; the girl who's doing well to match her ballcap to her tshirt and keep her toes painted; when I wonder if I'll be known in my field as the name of a scholarship instead of a scholar.

The challenge, then, to is to hold on to that girl - not as a memory of a great summer, but as a core sense of self. To reclaim "that girl" as my identity, with fleeting periods of fragility,rather than the sick, delicate girl, the "what might have been", who loosens up and has a little fun from time to time. To not let the reality of that fragility overshadow the strength that lies beneath - yet allowing them to coexist - is the ultimate goal, and the only way I think I'll find balance.  After all, I really always have been that girl; it's just a matter of convincing myself that she can adapt a little, rock out a little, and ultimately, win out over fear, in time. And if that means I have to lie to myself a little?

I can live with that.

*post title credit, Jonny Lang - google him/ find him on itunes and enjoy :o)