RheumaBlog

Same dragon, different day.

As a professional writer I’ve always had a particular fascination with words. A life-long imagination-surfer, I’ve thrilled to writing’s ability to transport me to new places, new worlds, even new planets and galaxies. I’ve gladly grabbed the opportunity to lose myself in the pages of a book and walk in someone else’s shoes, living their very different life for a little while. To me, writing is magic. The alchemy occurs when the writer scratches symbols in black ink onto a field of white paper (or upon a white digital screen, these days). Somehow the combination conjures up an ever-shifting, color-shot kaleidoscope of concepts and ideas.

Words.

For many years I’ve been aware of how powerful they are. Not just in imparting information, but in having a profound effect on our individual lives. The way we use words can shape and define us. Words give substance to our thoughts. And our thoughts are us, they’re our own, in a way so singular it’s almost indescribable. I cannot think your thoughts. You cannot think mine. The very act of putting them into words distorts and waters them down.

It’s probably a good thing.

But even so unavoidably diluted, words have incredible power. And so for a long time I fought using, or even thinking, the term “my rheuma.”  By calling it mine, I reasoned, my thinking about it was necessarily de-fanged. No longer could it be an alien, an incredibly annoying stranger shouldering into my life and laying around the living room, snorfing chips in front of a blaring television set. You see, calling it my rheuma would mean I accepted it on its own, stinking terms. I’d give in. It was as if because I couldn’t shift the nasty creature that took so much pleasure in prying my joints apart, I’d just try to make friends with it. Cuddle up. Be snuggly. Try to love it for what it was, even as it hurt me so badly.

I fought that for years. When I spoke about RA, I referred to it, gravely, as the rheuma. Oddly, I never wrote about it. Writing them down gives these concepts even more life and makes them more real. Yet in a strange paradox of logic, here I am, writing about it now.

When we have mice in the cupboards, we don’t cozy up and call them “our” mice. We try to trap them and kill them, and if we can’t kill them because our hearts are too soft, we’ll still trap them and take them a long way away before setting them loose. They are never our mice. They’re the mice. Or those mice. Sometimes we’ll even drop an expletive into the middle to make our feelings about mice totally clear. We don’t want them in our house, leaving tiny poops on the cookie sheets.

So rhetorically, at least, rheumatoid arthritis has never been mine. I forced myself not to think of it that way. I made sure I didn’t speak of it that way to others. In my mind, in my life, RA remained alien. The Other. Something to be fought at every turn. And this even though I knew, deep down in that quiet, logical, pragmatic part of my being, that I’d fight this particular enemy to the death. Rheuma and I will go down together, battling as grimly and violently as Gandolf and the Balrog.

I’ve written about this before in the pages of this blog. I go back and forth over this simple problem of rhetoric. I struggle with it because of my love for words and the life-shaping power within them.

But sometimes I get tired. I decide to call a truce with rheuma. I offer to call it mine. I tell myself I’ll be able to get close enough to file down its fangs if I do that. Maybe I’ll get a collar around its neck. Perhaps, if I’m really, really friendly, I’ll talk it into getting de-clawed. And so, for a while I’ll concede the battle and call it my rheuma. Poor thing is sick. I need to listen to it. It needs medicines. It doesn’t mean to hurt me. If I’m just gentle enough with it, good enough to it, give it the attention and stroking it craves and work as hard as I can to cure it, perhaps it won’t bite me so hard or so deep. Perhaps it will stop trying to cripple me. Or kill me.

Feh.

I’ve got to stop fooling myself. One thing about rheuma: it has no honor.

All of this bubbled up in my head again because of an email I got this morning from Tom Robinson, a chronic illness coach and the author of  the blog, “Living Your Best Possible Life When You Have a Chronic Illness.” He sends tips for living that best possible life to subscribers each week; when I signed up a few months ago I thought, hey, why not? It’ll probably be nothing but a bunch of new-agey, shallow platitudes, but maybe … maybe this guy is something special. I’d heard of life coaches, but chronic illness coaches? Wonders never cease.

Well, Mr Robinson surprised me. His tips are simple, but they’re strangely profound and useful. Perhaps it’s because he comes at his coaching from a place of experience: he has a chronic illness himself. I get the feeling he’s actually tried out his own tips – and while I could be wrong, I also get the feeling that he only shares the ones that work.

This week’s tip resonated. Here I sat in front of my laptop, a cup of morning coffee steaming gently into the chilly morning air, the cat kneading my lap and trying to get me to let him drape his warm, furry self over my forearms. (I wanted to let him, but it’s hard to type with 14 pounds of tuxedo cat weighing down your hands.) Said hands were encased in compression gloves and stiffened with wrist braces. I’d spent the day yesterday popping Tylenol and tramadol. I dipped my hands and wrists in hot paraffin four times. I read. I made soup, gritting my teeth at the pain the rheuma was causing as I chopped onions and cabbage. I did the best I could to just get on with the day and ignore the blasted pain. My rheuma? Huh-uh. No way, Jose. The rheuma. The battle continued and the storm-crows watched, croaking, waiting for me to fall …

Today’s a new day. Here’s what Tom wrote:

“My first tip is to name your illness symptoms. That may sound like a strange suggestion, but there are some very good reasons for doing it. One of them is this: when you give a symptom a name, such as Gertrude or Elmer, you separate yourself from it. When you do that, you are much less likely to identify with it, which makes it possible to step back and see ways for dealing with it and managing its effects on your life that you otherwise couldn’t.”

Yes.

Oh yes oh yes.

I understand exactly what Tom is getting at. He’s speaking my language; using rhetoric I can wrap my mind around. Not wanting to own the autoimmune disease that injures my joints and gives me constant pain by calling it mine is a difficult undertaking, particularly when I write. It’s simply harder to construct flowing sentences that feature “the rheuma” rather than “my rheuma.” I’m forever having to find new sentence structures, and often they’re not constructed nearly as well as they could be. Instead of being seamless, they look cobbled together. Awkward. Like an arched expansion bridge made of two-by-fours held together with nails. It looks sturdy, but actually stepping onto it to cross over that deep ravine is an act of sheer bravery.

Tom continues:

“A related benefit of naming your symptoms is that it allows you to communicate with them. You can write to them and tell them how they’ve affected your life, and you can tell them how you have felt, and continue to feel, with them. When you do that, you will probably find that you feel a sense of relief and very possibly a lessening of the severity of your symptoms .

“You can also have a conversation with “Sherlock” or “Agnes” (or whatever you’ve named your symptoms). When you do, besides telling them how you feel about them, you can ask them if there is anything they want you to know or to learn from them. You can ask them what are the things you do and the situations that make them worse, and you can ask them what changes you can make to lessen their severity and minimize their impact on your life.”

I like this.

I think I’ll call the rheumatoid arthritis that’s claimed squatter’s rights in my body “Mack,” as in “Mack the Knife.” Because that’s what it feels like to me when Mack’s hurting me. Like he’s slipped a knife between my joint-bones and he’s flexing it, back and forth, in rhythm with my heartbeat, forcing them further and further apart.

Mack.

I have some rather harsh things to say to Mack that probably don’t belong on a family blog. And once that’s out of the way, maybe I’ll sit down and have that talk with Mack that Tom suggests. It’s possible that Mack will ignore me. But that’s all right. See, now I know RA’s name as it manifests in my individual self. That gives me a lot more power over it and a lot more strength for the battles ahead.

Thanks, Tom Robinson. I needed that.

9 thoughts on “Words of power

  1. Helen says:

    What a fascinating and, as always, beautifully written post!

    I actually named my defibrillator when I got it, I suppose to make it seem more friendly. I called it Harvey, after the man who discovered circulation, since that’s what he’ll help me keep doing. Harvey doesn’t feel so unfriendly now, although he’s a bit irritating sometimes.

    I am so interested in your thoughts on calling RA “mine.” We have had such different experiences, but I find the same feelings are often at the core of our different approaches to illness. Calling my RA mine has always felt empowering to me, and you have made me ask myself why. I’ve realized (I think), that it’s because it makes me feel like I know it inside and out, like it’s mine because I’m the expert on it and I’m the one in charge.

    These “life with chronic illness” tips sound like a wonderful resource! I’m looking forward to hearing more about how they help you.

    And tell Mack to stop being such a jerk.

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  2. I have a friend who has named her recurring chronic migraine “Fred.” She originally thought it should have a powerful, malevolent name, but “Fred” sounds so… well, ordinary. Strips it of some of its power, I guess…

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  3. Oh, and thanks for the link to the Tom Robinson blog! Added it to my feed – I can use all the help I can get, especially right now, since I’m crazy on prednisone and STILL flaring!

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  4. What a great post. I’m so glad you found my blog–I’m excited to hear what you have to say (and read a lot of past posts). While I don’t have RA, I can totally identify with you thanks to my knee pain.

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  5. Tom Robinson says:

    What a wonderful post. I’m glad my tip was helpful. I had no idea it would help someone build a better and safer bridge.

    I don’t like Mack; he’s not a likable guy. But I think the name is great, and it helps me understand, better than I did before, what it’s like to have RA. And one more thing, which I just thought of while writing this comment: without Mack there wouldn’t be a rheumablog. I’m sure that without him you still would have touched and made a difference for many with your writing, but it would have been for a different group, very likely a less needful and appreciative one.

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  6. pollyannapenguin says:

    Oh Wren – as usual I didn’t know whether to laugh or cry, but ended up laughing more. Wonderful post. I suppose I do always say ‘my RA’ although I’ve never thought about it, and as I rant periodically I refuse to LOVE it or EMBRACE it. Why the heck should I? Not sure I want to name it or write to it just yet, but maybe one day …

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  7. Laurie says:

    Ha! I think I’ll call mine Wiltruda, partly because it makes me laugh and lessens its power, partly because it sounds like a wicked witch.

    Thanks for the posts and the inspiration. I’m new to this all (diagnosed last week, with symptoms that just started last November) and I’ve found the words and wisdom of bloggers to have been immeasurable. So a big thanks to you again!

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  8. Arthur is a popular name over here in the UK – as in Arthur the Arthritis – a lot of people actually chat about ‘Arthur’ on the NRAS forum. :o)

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  9. WarmSocks says:

    Wonderful post, Wren. RA isn’t mine, either. It’s A disease – one my doctor says I have, but the words “I” and “RA” and “have” don’t show up in a sentence in the S-V-DO sequence. Over two years and it’s still nearly impossible to say. I can deal with it in the abstract, keeping the disease at arm’s length.

    Thanks for the link. I’ll check out Tom’s blog. Keep us posted on how your little chat with Mack turns out.

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