Monday, January 12, 2009

My Body, My Self

I can already tell that this post is going to be a little ramble-ish, so readers be warned. I think I'm just feeling the need to blow off a little post-hospital steam and try to make sense of some of the changes 2009 seems to bringing with it. It's only two weeks into the year and I already have a really deep sense that this is a new era. But I promise I'll stop myself if I start to sound too much like an outdated textbook from Philosophy of Illness 101. And by the way they should totally start offering that as a course in college.

I think most of what I'm feeling right now can be explained as a weird type of conversation between my body and some other side of myself - maybe my spirit or my mind or my soul. Call it what you like, but I guess as a "sick" person I have always had some sort of distinction in my head between the two. My body, I always assumed on some level, was a shell for whatever else might compose the larger, more real me. Not only a shell, mind you, but an inadequate one: constantly frought with questions and concerns and random illnesses that served only to get in the way of my "true" self, which of course is always happy, full of energy, excited to tackle any task, loving and giving beyond measure, and basically more or less perfect. Obviously.

Lately I've been starting to reevaluate that concept. Not entirely; I still do see a distinction between my body and my spirit, and that distinction has in some ways only grown wider as my body has begun to succumb to an illness against which it simply has no chance (sorry, Dr. Beall, I'm calling it like I see it on this one). But maybe the distinction isn't as clear-cut as I once believed. Maybe my body, instead of being some unfortunate shell unprepared to deal with the stresses of housing such a radiant being inside it, is actually a pretty tough cookie deserving of a little praise in its (her?) own right. After all, this body has taken me 27 years into the abyss, for lack of a better image, and more days have been good than bad by a long shot. Maybe, then, my body is as much a part of my "true" self -- as much of a giver, a fighter, and a survivor -- as any other part of me. And then of course, maybe that means that the rest of me -- that amazing wonder of a woman that I always saw as so unfairly held back -- well, maybe she isn't exactly the inhuman ideal I've always so considered her.

In other words, maybe both parts of me are wonderful. And both parts flawed. And most importantly, both parts are the real me, together.

The rationale behind this not-so-radical realization is actually my job. Yep, I'm blogging about work. Surprised? It seems to be all I talk about lately, or at least it is now that I'm done complaining about hospital food. But honestly, it's just such a big deal for me. And I am really struggling with finding that delicate mind (spirit)/body balance. It's just not something I'm really grasping right now.

I'm 27. I worked REALLY hard to get where I am. I love my job. I work with amazing people. I feel challenged. I feel fulfilled. And I know these things are important. I KNOW that. But are they important enough to risk my health? Risk infection after infection and scar tissue build up that can ultimately only mean one thing? And if not, then where does the compromise begin? How do you negotiate a plan that neither you, nor your work, nor your doctor is ever going to be completely satisfied with, because all of you want and need different things? What's the jumping off point?

I'm not sure how to look my parents in the eye and tell them that I, their youngest daughter for whom they would (and have) sacrifice so much, is willing to potentially jeopardize the amount of time we have left together in order to feel more personally fulfilled. I don't know how to explain to people that it's worth it for me to face being cut in half and put back together again years earlier than I otherwise would have just so that I can continue to show up for work in the morning. I don't know how to tell my work that even though I seem fine and always accept each assignment with an enthusiastic nod and an excited smile, this workload is, literally, killing me. I don't know how to make a group of wonderful but very high-achieving attorneys understand that although I return from each new infection and round of IVs with the same spring in my step, my lungs are irreversibily damaged. I don't know how to say these things out loud, maybe because I don't know yet how to say them fully to myself.

I keep coming back to that way-overused line from Steel Magnolias: "I would rather have 30 minutes of wonderful than a lifetime of nothing special." But of course it's not nearly that simple. Or that cute.

I want to be happy without being selfish. I want to be active without being irresponsible. I want to remain as healthy as I can while still living my life. I want to look both parts of myself -- my body and my spirit -- straight in the eye and tell them I understand where they're coming from and that I care.

And that I'm trying.


  1. Shouldn't we be allowed to be a bit selfish? To have the odd day off work if it meant a few weeks of extra health? Thats why I'm convinced that they should change school to weekends instead. :D xx

  2.'ve so perfectly, beautifully articulated so much of what I'm feeling right now. I so understand that struggle, wanting to honor the sacrifices made by others on your behalf both by being cautious AND by "living ife to the fullest" (whatever that's supposed to mean). I also get the love-hate relationship with your body, and not in all the cheesy, exterior ways you read about in women's studies classes (or hear on Oprah, ha). I just typed a bunch of stuff but I'll just wait and blog about it later. I don't have any answers, but I get where you're coming from.

    I also have a David and Goliath Tshirt that has an angry cookie with a bite taken out of her head with the caption, "one tough cookie". I'll post pics later, but you should totally get one :o)

  3. How do you convince your family and friends that although you are happy and care-free and smiling all the time, on the outside, that you are struggling with so much on the inside that they can't even comprehend?

    Amen to you sista! I think you and I should get the award for blogging the most about work and CF :) Neither one of us is willing to throw in the towel yet, even though we know we should. It's that darn CF stubbornness again!!!

    I know what you mean about two beings. I feel like my true self is being beaten down and suppressed so that my body can continue on. But then my spirit is changing itself to match the body which I don't like. For example, if I see people dancing I want to get up and dance too. But then reality kicks in and I know that if I were to get up there I would keel over coughing in about 30 seconds. So then I get all annoyed and grumpy and jealous.

    Well now that I have written a blog within a blog I shall leave you.

    To us and our never ending battle with "to work or not to work"!!!!


  4. I think this disease is constantly about having to let go of who we think we are and reevaluate. It really is a pretty mind blowing thing when you think about it, because our bodies are often changing so much more rapidly than our heads are....

    you worked so hard for your lawyer identity - and your body has not given you the chance to completely enjoy that as it's gone ahead and changed before you were ready - but I guess we have to get kind of zen and let ourselves let go of these things in order to appease the body. Or we DON'T and again, we make that conscious choice to tell the body to back the fuck off - and we take that consequence as well. Ain't easy - but I have not yet met too many cystics I didn't think were pretty amazing. I hope you can figure out some way to what you love and stay healthy even if that requires some reevaluationg of just what it is you love.

  5. Piper, you put it so eloquently! I was in the same place a few years ago. And I finally went to full SSD 1 year ago. It was one of the most painful cf-induced decisions I have ever had to make. It still hurts 1 year later. I give you so much credit for trying to find the right balance for you! Hope you hit upon something that allows you to maintain your professional identity and your health as much as you can! -Ellie

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