Monday, November 17, 2008

Left Of Center

“[…] I can’t stand to fly
I’m not that naive
I’m just out to find
The better part of me […]
[…] Even heroes have the right to bleed
I may be disturbed...but won’t you concede
Even heroes have the right to dream
It’s not easy to be me”

- “Superman,” Five For Fighting


“[…] I don’t know why I was so ashamed
Such a waste of time
And I don’t know who I was trying to be
All those lies […]
Oh and there’s always something
Or somebody right behind
Well we’re not meant to be everything
We’re just a piece […]
Oh I don’t know why I was so afraid all the time […]
I used to carry the weight of the world
And now all I wanna do is spread my wings and fly”

- “Weight of the World,” Chantal Kreviazuk

My life feels off kilter and unbalanced and I’m not sure what to do about it…

I’ve realized that having attempted (and sometimes succeeded) at superhuman feats in my not-so-long-ago past life, I’ve set the bar incredibly high for which to judge myself and for others to judge me.

And now, when I’m no longer physically capable of such acts, it’s no wonder that people can’t possibly begin to understand why (not). In some ways, I feel like I set myself up for (inevitable) failure, whether caused by myself directly or by forces out of my control.

As a senior in college, I wrote a 125+ page honors thesis. And it never occurred to anyone to tell me what a terrible idea that was. And now it haunts me that the person who wrote that, whose blood, sweat, and tears created it, no longer exists – I can no longer afford to be the person I once was.

And it’s ironic (I think) that so many of us “Type A-ers” are the ones that get autoimmune diseases. Because when we are no longer able to compete at our previous levels, all there is, is disappointment.

And we are, in effect, asked to make a lifestyle change. For me, though, that doesn’t mean changing something small. It means changing who I am as a person. It means taking my expectations of myself (and by extension, everyone else’s), packing them up, and burying them. And maybe the truth is that those “profound” lifestyle changes were changes I should have made a long time ago.

This line of thinking is related to the recent backlash I have received from people. Another possibility for this treatment is that while they would never admit it, the people who have been less than helpful know they wouldn’t be as strong as I am. I don’t say that in an “I’m so great” sort of way. What I mean is that they are afraid of how they would react, being in my position. On the other hand, maybe they’ve dealt with things in their lives where they received little support and are angry and take it out on those most vulnerable because they can.

And I hope that if that’s the case, regardless of what my experiences have been, that I will never do that to others. That I won’t become so bitter and resentful that I refuse to give others a break because I didn’t get one.

But the truth is, I think it’s admirable to admit when a specific part of your life infringes on all other aspects of it and you don’t pretend like things are fine when they aren’t. And I realize now that, that is what the problem is. I’m doing fine in my program, I’m pretty much on schedule. If I were flunking out, maybe then people would pay attention.

I’ve never been one of the “popular” kids. Throughout life, I have had various personal appearance (frizzy hair, glasses, braces on my teeth for far too long, etc.) and personality (smart, etc.) issues that warranted “dork” status.

When I got to grad school, though, in some ways, I felt like I had left that complex behind. Even though there were many times in that first year when I questioned my own abilities, by virtue of having been accepted into such a highly ranked grad program in my field of study, I was suddenly thrust into the spotlight. At every turn, professors who had read or heard about my thesis would go on and on about me.

And then I got sick and my tenure as a member of the “in crowd” receded once again, relegating me even farther down the food chain than I was before – from “dork” to pariah.

And that’s where I remain.

(And I don’t mean that to garner sympathy. I say that because I have a feeling that some of you out there will know exactly what I’m talking about.)

I’ve had so many thoughts and feelings swimming through my head lately.

It’s not as simple as burning pictures and banishing memories from my head. It’s about admitting to myself and others that the person I was before can no longer be. And it’s about learning to not be ashamed of that. And about learning to ask for help, even when I don’t want to.

When I was doing all my reading of books about lupus, rheumatoid arthritis, and prednisone, about how to dance with the devil and still make it out of hell, I wasn’t grieving. I was still trying to be an “outsider,” viewing my life from someone else’s perspective and not my own.

And I struggle with the fact that I have an appointment with Doctor C on Wednesday, and while I’ve thought of every possible way to get out of it, it seems that hiding or attempting to run from my problems is the unhealthiest way to deal with things.

The whole concept of “premature aging” pretty much sucks, but learning to accept your own fallibility, is unfortunately, a valuable lesson to learn. And I’m not sure that there are ever enough tears that can be shed or that we can ever truly accept the fact that we are only human.

And yet again, disclosure is a complicated thing. It’s hard to decide how open to be about such things. But what really frustrates me are the people who have no right to think they know what my life is like, and yet they compare themselves.

There are, however, friends I’ve made from the chronic illness virtual community who sometimes shock me because they get me so well. Even though we don’t communicate face-to-face, they can sometimes fill my wordless void and come up with the right words for me. And then there are people in-person whose unsympathetic, unsupportive words hit me like a ton of bricks. Shouldn’t the roles be reversed? How can someone that I’ve never met before get me so well, and someone I see on a weekly basis not know me at all?

Then there are those, who, in their own quiet way, are watching, and listening, and appreciating the effort that it takes just to get through the day. But inevitably, they are the ones who are all too familiar with the “identity shift” that takes place when you go from “healthy” to sick.

So, I guess what I’m trying to say in my own convoluted and verbose way is that I’m deeply confused. I’ve realized that I have to let go of my “pre-illness” self and learn to adapt to life as a new person and I have to learn which battles are worth fighting and which are not.

Fighting for control in a situation that you don’t have control over is like fighting for air with a plastic bag over your head. And the truth is, I haven’t exactly taken the bull by the horns with the little part that I do have control over. I’m just not that good at the self-care part.

That was then, this is now…

Heal thyself.

Life and let live.

(I’m not even sure how much sense this post makes because it has been written in fragments over the past week or so, but I figured it was long overdue, so I posted it anyway…)


  1. "Left of center
    In the outskirts
    On the fringes..."
    Virtual communities are very comforting, and oddly liberating. Mine helped me get through a lot of emotionally rough times when I was younger (though not nearly so rough as yours). But if you want some offline company sometime (even if it's just watching a movie or getting coffee), let me know!

  2. Sometimes those 'just-get-it-out' purges contain the best stuff to work with.

    I'm glad you posted it~ and what you say is on target for many of us. I doubt anyone can actually say they have completely let go of their 'old' self, though. Is it really even possible? I wonder.

    I venture to think that 'old' version of yourself is still alive and 'well' - embrace the spirit, sista''re still in the driver's seat and going places, just in a different set of wheels.

    sending you a smile and a hug-

  3. Well, it's nice to know that even when I'm feeling off-balance, there are still people that believe in me - and even want to hang out with me!

  4. Leslie,

    All that you've said applies, not only to the newly diagnosed, but even to us "old timers" as well. While I have become more accepting of who I am and what I can no longer do, I still go through bouts where I miss my "healthy" self and all she could accomplish, and yes, sometimes I try to hold myself to those old standards.

    As for people who are in your physical life not getting it, I was having this same conversation with my mother this morning. I had a biopsy yesterday, and I feel awful. I got several e-mails yesterday, (including a nice one from you!), asking about how I was doing. I received one call from an actual in-person friend. Why can people get us when they don't know us, and the ones who should can't?!! Is it because it is easy to send off a quick note or e-mail and harder to "be there" in person? I don't know the answers myself, but I am grateful for the on-line community that supports me just the same.

    Thanks for always being so honest, and for saying what I think a lot of us feel, but don't always admit. It takes courage and strength!

    Hope things start to take a turn for the better soon!

  5. Hmm, I feel I could have written this post.

    Like you, I'm an overachiever by nature. And like you, I've had a huge struggle accepting that I cannot hold my sick self to my healthy self's performance standards. That just layers on the guilt and feelings of inadequacy and frustration when, inevitably, I come short of my goals.

    It's said frequently in the chronic illness community, that acceptance is a journey, not a destination. I know that's true for me. Some days I can accept my current limitations better than other days.

    What's also important to remember is that your current limitations are just that - current. I'm not saying you should hold onto your high standards and keep setting yourself up for that disappointment. I am saying that there's no reason you need to bury the person you are by nature.

    For me, that has meant (in part) learning everything I possibly can about my disease. That's meant being diligent about taking care of myself and following my (often demanding) treatment regimen.

    Sometimes that isn't enough for me, though. When I have to cancel plans with friends yet again because I don't feel well. When I have to send DBF to the store by himself. When I have to bail out of something suddenly and have DBF drive me home. When I have to ask for help. It's hard, and it's hard to accept that I need help when I'm an independent person by nature.

    The one thing above all else that has helped me to cope is to reach out to the virtual chronic illness community. Knowing there are others out there feeling the same things, having the same questions and facing the same frustrations as me helps me to feel less isolated.

    Not to sound trite, but the thing about life is it always changes. Nothing stays the same way forever. So that means while yes, sometimes things will change for the worse, they will also change for the better.

    Sending you lots of hugs. You have my email address if you want to talk.

    Be well,