Wednesday, August 5, 2009

Everyone Wants To Be A 10, But No One Wants To Be A 710


710?!?

“[…] People meditate
Hey that’s just great
Trying to find the inner you
People depend on family and friends
And other folks to pull them through […]
But these three cubic feet of bone and blood and meat are all I love and know […]”

- “One Man Guy,” Rufus Wainwright

There, I said it.

For those who aren’t lupus savvy, 710 is the diagnostic code for lupus. If you’re a lupus patient, you know that this code is as good as your name. She’s a 710.

Whatever happened to She’s a 10?

Lupus is a liability, and it ain’t pretty. To say that I am okay with this body is the overstatement of the century. To think that acceptance is going to come overnight is na├»ve and stupid. But to work on getting there is a whole other story. And probably the best that can be hoped for right now…

Illness is like an open wound begging to be healed, but only I can heal me…

I recently fell back on an old habit, well, maybe a habit I never really lost, of relying on others to build me up; to tell me I’m smart and beautiful and a great person, but… That’s not quite enough, is it? And you know what? It shouldn’t matter at all. What should matter is what I think. And what I think should be great.

I guess I convinced myself that one person, maybe even a certain person, could single-handedly “cure” me, but even if that person really desired to do that, it would never work. Because I’m the one who has to do the fixing. I think it’s possible for someone to make me want to be a better person, but a different, not sick person, I don’t think so. I think I got romanced into the notion that even the most unsolvable problems can be solved in the name of someone else. And now that just sounds silly.

I really struggled with writing this post. But then I had a mini-epiphany. I’ve had several conversations recently about people in my life who I’ve forgiven, some for slights that some people say are irrevocable, others for small things (some that seemed big at the time). And the truth is, we all have had people that we’ve had irreconcilable differences with. There are several people that are no longer in my life, and most likely, never will be again. And while that’s very sad, I prefer to concentrate on those who I haven’t cut out completely, regardless of what the transgression was, or who committed it.

As of late, it has become much better for both my physical and mental health if I can move on, and try not to harbor hurt, pain, anger, and resentment. And in most cases, moving on means forgiving. It certainly doesn’t mean forgetting. There are certainly good friends in my life who know they have hurt me in various ways, and some who don’t realize they have, who, while I may never forget what they did to me or I them, have forgiven.

The point is, if I can look at others and forgive all the crap, then I have to be able to look at myself and do the same. I have to be able to let go of all the crap I’ve collected over the last few years. And I probably won’t be able to do that easily, but I think a solid first step is acknowledging that it’s crap, that I can look at myself in the mirror and say, “Hey, that’s me. And I’m okay with that.” Illness and all…

A few years ago I read “Why I Wore Lipstick to My Mastectomy” by Geralyn Lucas. I wasn’t sick then, but I guess I may have always had a penchant for patient narratives. The point is, Lucas was diagnosed with breast cancer at the age of 28. At the end of the book, she gets a tattoo on her reconstructed breast and then has topless photos taken. Yes, this is a very crude summary of her story. But the point is, after this experience, she sees herself as beautiful for really the first time in her life, despite, or maybe in spite, of everything she had been through.

I’ve had several experiences that make me see myself differently, because when I look at myself in the mirror, I see a person that I’ve never seen before…

And that’s the true test.

Many of us, namely me, spend so much time obsessing over what other people think of us that we lose sight of how we feel about ourselves. Or maybe we feel so badly about ourselves that we only have others to rely on to build us up. Being a 10 is as much a mental pursuit as it is a physical one. Being ill, you can be the most important person to yourself and be unapologetic about it. Sure, people may think you are selfish, but the truth is, if you can’t put yourself on the top of your priority list when you’re ill, you’re screwed. I’ve learned this the hard way (and I’m still working on it)…

Recently, I did something for myself that may appear to some as incredibly self-serving. I asked a friend to take some pictures of me. I wanted my friend to capture me naturally; no makeup, in my own environment. What I really wanted these pictures to say is, “This is me, take me or leave me.” And I think that’s exactly what she did. Like I said, I don’t have any make-up on in the photos. But it’s really the first time that I’ve been able to look at a picture of myself and say, “Wow, that’s me, and I kind of like what I see.”

For the past two years, I really couldn’t stand looking in the mirror. When I first got sick, I was so confused, all I saw was a stranger. And then once prednisone came into my life, I really was staring at a stranger; a zit-faced, water-retaining chic. It’s like those nightmares people have about showing up at their high school reunion, but this was real, and a lot worse than I ever imagined. I had to, and not so nicely sometimes, tell friends not to tag me in photos on facebook. And no one really understood, and I never really cared to explain. So to be okay with seeing pictures of myself is a huge step from where I was before.

I guess knowing firsthand that the body is fallible, I wanted to show myself that in the face of everything, maybe I’m not as fallible as I thought. And I honestly think if I had tried to take pictures like this before all this illness stuff, I don’t think they would have come out the way they did.

If looking and feeling like a 10 were easy, then everyone would be a 10. I think the only real way to be a 10 is to be okay with yourself. The rest will follow… I think most of us desire to the best we can be; the best child, parent, sibling, friend – and the list goes on and on. Illness can definitely challenge this. And maybe I’m just getting tired of being down on myself all the time, feeling as if there’s something that I realistically could have done to prevent these illnesses from happening to me. Just as I do not want to harbor hurt, pain, anger, and resentment at people I want in my life, I no longer want to harbor hurt, pain, anger, and resentment at myself (for things that I have no control over). Because I have control over the way I feel about myself and the way I treat myself, and in the face of illness, that has become more important than it ever has before.

So, I don’t know what’s going to fix me. But I know it’s going to be me who is going to have to do the fixing. My friends say great things, and that’s awesome, but it doesn’t mean much if I don’t see what they see, and I think they must be talking about someone else.

So maybe I’m the Geralyn Lucas of lupus (because I’ve been considering getting a tattoo, but that’s a whole other story). Or maybe I’m me, trying to do what I need to do to make myself feel like more of a person of worth, rather than damaged goods. Maybe I’m finally able to look at the crap and see that it’s just that – crap.

A 10 can certainly become a 710, but can a 710 be a 10? You decide…

I have to give a shout out to my friend Rachel, who took the pictures. Honestly, I always knew Rachel was a woman of many talents, but her photography skills really blew me away. You can check out Rachel’s pictures on her site, Shadow & Soul Photography, or read up on her photographic adventures on her photo blog.

10?!?

(Photo Credit: Rachel Hyerim Sisco)

11 comments:

  1. Great post, Leslie. (And I think the picture is beautiful!)

    I think the issue of control is so important in this discussion. You're right--there's so much about illness we can't control, and that's something I write about often. But what we can control, as you pointed out, is how we view ourselves and treat ourselves. That can be physical, like making choices that best enable us to feel well and minimize flares, but treating ourselves right can be emotional, too, and that can be so much harder to do.

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  2. Another great post, Leslie. And thank you so much for the shout out! It's easy to take great photos when the subject is as lovely as you. :)

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  3. What a beautiful photo! And what a great post. It's something I work at every day. Reading about your own journey has been very inspiring!

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  4. Wow -- I think that photo definitely shows that you're a "10" in your own right in addition to being a 710.

    Wonderful post, as always. I'm a long ways from self acceptance of this body I live in, but you're inspiring me to work harder at learning to accept it for what it is. Thank you!

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  5. Leslie,

    I too think your picture is beautiful. But that's not why I wanted to leave a comment.

    Like you I have a chronic illness. However, in my case the biggest reason I didn't love the guy in the mirror was not due to that illness (Crohn's disease). It was mainly due to the the large gap between what I thought I should have achieved and what I actually had. But after years of not loving or even liking myself, I had an aha moment where I realized that the achievement gap was the result of emotional wounds, and that because I was so wounded I deserved compassion - including from myself. I started giving myself as much compassion as I could, and my wounds, which I realized had been there for many years, began to heal.

    When we are wounded, whether emotionally or from having an illness, we deserve compassion from ourselves - and the more wounded we are the more compassion we need and deserve.

    Most of us would automatically give lots of compassion to our friends if an illness befell them. We need to be our own friend and give the same kind of compassion to ourselves.

    This subject is near and dear to my heart, so I've written several posts about it on my blog, including How to Love Yourself When You Have a Chronic Illness - an Open Letter to Richard M. Cohen.

    Best wishes and thank you for sharing your story.

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  6. Thanks for sharing another great post, Leslie. You got me thinking about how a life complicated by chronic illness is made tougher by the way the "business" of healthcare is conducted. It struck me as sad that you should be so intimate with the numbers that describe your condition, even though that's not what was on your mind. (Here's a link to a post I wrote that you inspired: http://florencedotcom.blogspot.com/2009/08/its-all-in-numbers.html)

    I'm glad that you're enjoying the nice things that come with being an attractive young woman. Hope I was able to do a little "healthcare ranting" that serves your cause!

    Best,
    Barb

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  7. Thanks all for your kind words!!!

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  8. Tom,

    I think you are spot on about the "achivement gap." I definitely know how that feels. For me, it has been about what my body can't do. And why, even intellectually, it can be limiting. I also think that when your identity is so shored up in one thing, illness can be a crushing blow. I've really had to stop and look at the fact that I'm not just a student or quasi-academic. I think the issue is that illness impacts all facets of life. And you're right, the best we can do is to be compassionate to ourselves. Thanks for your comment!

    Leslie

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  9. Barbara,

    Thank you for alerting me to this post. You are right - there are/should be more important things to worry about than diagnostic codes. But I think you are also correct in that patients become reduced to these numbers, so how do we separate ourselves when that is all we know? I completely agree that there are major parts of our healthcare system that are completely warped. Being able to label me a 710 and lump me into a category may be easier for the doctor, but what it does to the patient is reduces them to something less than human, not worth knowing as a person.o I think we are all fighting to have our voices heard, but much in the medical bureaucracy seeks to stifle self-expression, individuality, creativity, etc. Thank you for writing this post!

    Leslie

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  10. It sounds like you've found that place of acceptance. You've sure given me some things to ponder this morning.

    And the photo is lovely. You're much better than a 10-you have a great mind!

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  11. Congratulations on taking the photos and finding your beauty! I agree, it is loving the way we ARE not the way we think others see us that is important. I really enjoy your blog!

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