Monday, January 11, 2010

"A psychological resistance to the war metaphor."

I often read Andrew Sullivan’s blog. It’s usually political, sometimes philosophical, and occasionally personal. Sullivan lives with HIV, and I often find the posts in which he discusses his life with the virus really inspiring. Yesterday, he wrote about how learning more about the science of HIV helped him come to grips with it:

Once I realized that there was no getting rid of it ever, that it had already buried itself into my genes, I simply owned it, grew to believe I was not at war with it, because that would mean being at war with a part of myself, and saw it as simply a part of my body that needed to be managed, like nails, or skin, or muscle. The way to manage my virus was to keep it close to non-existent through anti-retrovirals and then to embrace what was left of it.

I learned to love my virus.

And as I did, I became less afraid of it. And I believe that lack of fear and sometimes over-dedication to my work helped me survive it, or, rather, survive with it. I think this is wiser than some modern conceptions of our bodies as somehow alien to illness rather than as part of the web of virology and bacteria and life that exists on this planet. So you tend to your illness as part of your body rather than seeing it as an invader to be conquered. I don't mean some new agey idea that modern medicine is irrelevant. Au contraire. HIV kills you if left untreated and aggressive medicine is vital. I mean a psychological resistance to the war metaphor, an ownership of your own cells, and the spiritual calm that accepts our physical embeddedness and is often the reward of a close call with mortality. The calm fades so easily so often. But without it, we die.

I love this idea of illness as part of our bodies we must tend, rather than as an invader we fight. So Enbrel isn’t a weapon; it’s a tool, like my hairbrush and my toothbrush and my elliptical. When I read this, I realized I long ago stopped seeing my arthritis as foreign. I suppose it helps that I don't remember a time when I didn't have it. But when my elbow is puffy and sore or my wrist hurts so much I can't close my fingers around the handle of my teacup, I don't just think, "poor me," or "poor wrist." I think, strange as it sounds, "poor arthritis. I should take care of it."

I don't really perceive it as attacking me. I see it living with me and in me. Sometimes it needs a hot bath or a nap, sometimes an extra NSAID to get it through the afternoon. It likes Enbrel and really hates getting out of bed in the morning. Sometimes it demands a lot of me; at other times, we exist together in an uneasy peace. It's become, over the years, as much a part of me as my sense of humour, my (towering) inner nerd, my total inability to endure noisy eating.

It's just there, in my cells, and as Sullivan says, I own them.


RA Guy said...

Thank you so much for sharing this. I've been having these feelings over the past few months, but had yet to put them down in words. The excerpt that you quote from the passage does so in a succinct manner.

The more I accept my illness as part of who I am, the less I feel served by the war metaphor, i.e. "go on the attack". I want to help my body, but I don't want to attack it even more.

Food for thought...

brilliantmindbrokenbody said...

It's funny, my illness is literally a part of me - genetics that create easily damaged collagen - and yet, I still feel like I'm fighting it.

Though I suppose I see it a little differently than my body vs my disease. I see it as me vs my body. The body fails, isn't capable, declines to do things...often at the most inopportune time possible. I find myself torn between trying to take care of it and fighting it. Coddle it or push past where it resists.

I feel less like we're at war and more like we're quarrelling siblings.


rheumablog said...

I think, perhaps because I wasn't born with this disease, or didn't get it as a youngster, I have a hard time regarding it as simply a part of my own body. That's not to say that I won't try to change my view, or that I haven't, as the years passed, become more tolerant of its presence. You've made me very thoughtful, Helen. Thanks for an excellent post.

Cathy said...

What a great post. Accepting and treating our disease as part of who we are in much easier than always considering so ugly beast taking over our bodies. I like the idea of "tending" to our bodies.

pollyannapenguin said...

I'm sorry but I flatly refuse to 'love' my illness. No, I'm not at war with it either ... war is a bit dramatic and overstating the point. I'll keep on battling it though! ;o)

Helen said...

Thanks for such interesting comments.

Kali - I know just what you mean by the "quarelling siblings" metaphor. Sometimes I feel the RA is like a roommate in the same body with me.

Polly - I don't think I quite love my RA, but I just can't hate it, either, because I really do see it as part of me. This isn't through any deliberate effort to see it in that way, either; I think it's just the effect of living with it for my entire life. It's always been there, and I know it intimately. I can't hate it, because it feels like me.