Butterfly Cauldron

Wednesday, May 31, 2006

Swimming with sharks

For the last six years, I have knowingly shared my body with an invader.

Lupus. Popularly depicted as a wolf, due to the Latin and the supposed wolf muzzle appearance of the face rash. But I always think of my disease as a school of sharks, swimming in my blood. Sometimes they sleep, eyes closed, mouths closed. Deceptively peaceful. Othertimes they wake, startled and hungry. Eyes like fired stars, teeth -- the teeth are huge. Sharp, pointed and so very intent on rending and tearing up everything in sight. And the only thing in sight is my body, my organs, the muscles and joints, defenseless against them. That's what I see when I think of my disease. That's what's been sharing my body these last years.

I've been asked before to describe the pain Lupus causes me. I say: My bones are concrete that's been set on fire. My spine is shattered glass rubbing slowly against my spinal cord. Sometimes, I beg the gods to let the cord break so I won't feel anything. Electricity shoots down my legs and my arms, the muscles expand and contract, jerking against my will. I drop things, I run into walls, I fall. I cannot pick up my niece when she holds her arms up at me, so happy to see me, because I'm afraid I'll drop her and hurt her and I'd never forgive myself if I did that. Friends lay their hand on my shoulder and I cringe, sobbing. The smallest touch leaves me in agony for hours. The straps of my bra hurt. Breathing too deeply makes my chest feel as though it were ringed with iron bars. I'm exhausted. So very, very tired. But I can't sleep. I can't focus. I feel like I'm moving through a fog. My vision changes, things get fuzzy and my eyes dry out. My face flushes, while the rest of my loses all color. The slightest exposure to sunlight sends me to my bed for hours. Or to the hospital, if I'm unlucky. Rashes break out across my chest and arms. Sometimes they leave scars. And most of this, no one can see. Most of the time, I look perfectly healthy. No one knows how much pain I'm in. No one knows how hard I cry at night. No one knows how I go to work, then go home and go straight to bed.

How do I explain what this disease has cost me? How do I say: I can't go into the sunlight. I have to get 10 hours of sleep a night or I'll be very sick the next day. I can't make plans because I don't know if I'll be sick or not. I'm afraid to start a relationship because I couldn't handle falling for someone then having them reject me when they realized how sick I get. I can't work more than 40 hours a week, so I can't take jobs that would pay me what my time is worth because they all expect 50 hours, at least. This disease is isolating, even when I fight to stay connected.

And then, how do I say what this disease has given me? How do I say: I'm kinder to myself. I'm more forgiving. I'm more inclined to give people the benefit of the doubt. I'm a better listener. I'm a better friend. I'm a better human being. I'm more focused on what I'm willing to accept in my life. I'm less concerned with what other people think of me, in general. I'm more able to truly enjoy my body, what it can do and what it can experience and how it works, when it works. I don't take walking for granted. I don't take breathing for granted. I don't take a night's sleep for granted. A day spent painting means more to me. A day spent writing means more to me. Phone calls to friends mean more.

Some days I think it's worth it, others I don't. Right now, I'm lucky. Right now, I'm not having a flare. Right now, I feel good. Tomorrow could be different. Tomorrow could be better. I don't know. Only, the thing is, neither do you. We all go through our lives, making assumptions about our health, about the time we've got left, about our jobs or our families or the people who love us. But, they're all just assumptions. The only real difference between me and someone who doesn't have a serious illness is that I've been made starkly aware of how fragile that illusion of control is. I didn't want to be. I rather liked my illusion. I liked my plans to go on and get my Ph.D. I liked the idea of being a college professor. I had visions of teaching at a small liberal arts college, having a little house with a couple of cats and a cactus garden and many happy days. But that didn't happen for me, thanks to this disease. So now I have a different life. It's not a bad life, but it's different. (The bittersweet thing? Now that I'm well enough to go back to get that Ph.D, I can no longer afford to. I'm swamped with medical bills and student loan payments which I can no longer defer.)


posted by Zan at 5:58 PM


I am the CEO of the Lupus Foundation of America...Any idea who wrote this I would very much like to reprint it but I would like permission

Thank you and wondeful blog

Joshua Estrin,MS

7:25 PM  

Hi Joshua!

I'm the one who wrote this entry. (Well, I also wrote all the other entries too.) You're certainly free to reprint it. Email me at suzanmanuel@gmail.com to discuss it.

7:43 PM  

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