Big question

Where do squirrels go on their summer vacation?

This was the question Mom and I were pondering this morning. The subject came up because the Black Diva Kitty-Kitty was streaking from windowsill to windowsill up-and-down-stairs this morning, her glowing yellow eyes intent on something beyond the glass that we couldn’t see.

I suggested she might be watching squirrels, as I’ve seen a few of them (or maybe just one; squirrels move fast) in the trees and on the back fence the last couple of days. I also noted that “they’ve come back, I guess,” because there were no squirrels, anywhere around here, all summer long.

“I wonder where they go?” Mom said as she carried her refilled go-cup of coffee back upstairs to her bedroom. She sits in bed, drinks her coffee, nibbles a cinnamon pastry, reads the newspaper and does the crossword puzzle every morning. If she doesn’t start her day this way, I know for sure she’s not feeling well, even when she lies and says she feels just fine.

But back to the squirrels. “I wonder where they go?” she said.

“Summer vacation.”

Mom grinned. (Score! Getting mom to smile is worth five points. A chuckle is worth 10, and full-out laughter earns me a whopping 25 points!)

“Yep, they pile their squirrel-suitcases and their squirrel-ice chest filled with chilled acorns and acorn-colas into the trunk of their squirrel-station wagon,” I went on, visualizing. “The squirrel kids tumble into the back seat and start fighting over who gets to hold Fido, their pet field mouse. One of them squeals that she needs to go to the bathroom. Mom-squirrel turns in the passenger seat and snarls at them to stop fighting, hold it, and shut up, we haven’t even left yet! Dad squirrel stares straight ahead through the windshield and remembers how much fun he used to have when he was a squirrel bachelor with nothing to think about but his nuts.”

Mom chortled, stopped halfway up the stairs. “Where do they go on vacation? Somewhere with taller trees than here?”

“Yeahhh,” I deadpanned. “They drive to Big Trees and go camping way up in the top branches of one of the giant sequoias. Dad-Squirrel gets his jollies by dropping pine cones on the heads of the unsuspecting tourists 600 feet below. He gets 25 points for a shoulder hit, 50 points if he hits the human’s head, and 100 points if the human tips over.”

Now Mom was laughing. Kitty-Kitty zoomed with evil intent from the bay window in the living room to the garden window over the kitchen sink. I swear she pointed like a dog. Squirrels, for sure.

“After it gets dark Dad-Squirrel tells squirrel ghost stories and scares the kids so bad they won’t sleep in their own tent. Mom-Squirrel gripes about having to cook over a damned campfire—you try making acorn-coffee that way—and how dirty the kids are getting. She’ll have to spend a week just washing clothes when they get home…”

And so it went. Mom giggled the rest of the way up the stairs. And for a little while, I didn’t notice my achy bursitis hips or my sore RA hands.

Squirrels. In sunglasses, Bermuda shorts and flip-flops. Laughter really is the best medicine.

 

Say it again Sunday: Words of power

The following is a post I wrote back in January of 2010, another exploration of RA and the words we use to ourselves and others to describe and cope with it. Since my muse is sleeping in on this quiet Sunday morning, I’ve decided to re-post it:

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.

Deep breath. Start fresh.

Every morning before I get out of bed, I do that. I breathe from the darkling air the determination, perseverance and steel I need in order to face my first few steps of the day. Take a deep breath. Suck in courage. Now, another. And another.

It’s my all-day-long, secret ritual. Rheumatoid arthritis, my own personal flavor of autoimmune illness, is invisible. So is lupus. Sjogren’s Syndrome is another. Psoriatic arthritis can be invisible. Multiple sclerosis can be, too. There are more than 100 illnesses that fall under the autoimmune category, and most of them are invisible.

They’re the diseases that elicit the famous words, “But you don’t look sick!”

National Invisible Chronic Illness Awareness Week starts today and runs through September 18, sponsored by Rest Ministries. “Deep Breath. Start Fresh” is this year’s slogan. The week isn’t a celebration, exactly. What it is, is this:

“… In past years we have featured a 5-day virtual conference with special guests who help us learn to live better lives even though we also deal with the day to day struggles of an unpredictable chronic illness.

“This year we will be featuring some of these exceptional workshops. Each day we will provide links to 3 or 4 podcasts we think you would enjoy. We hope that you find the information valuable and helpful and please feel free to share it with a friend, on your favorite social network, or even in your own blog (you can actually get the embed code at blogtalkradio.com)”

Rest Ministries asks, “How can you ‘live what you’ve learned’ about living with a chronic illness? How can you encourage someone else to start fresh?”

Pass it on.

The semantics of RA

The writer of a blog about RA recently wrote a post about her rheumatoid arthritis and how she dislikes the word “accept,” preferring instead the word “adapt.”

(Before I go on, I should note that a friendly quibble over the meaning of words used in certain contexts, or semantics, is the favorite pastime of most writers and almost all editors. We just can’t help ourselves. It’s too much fun.)

That said, I absolutely agree with the blogger that having to accept that I have a mean, painful and possibly disabling autoimmune disease is frustrating and distasteful. And I agree that the word “accept” implies my willingness to receive, approve of or take on the disease without protest. It implies that I regard my RA as proper and normal, that I respond favorably to it, agree to undertake it and assume an obligation for it.

Um, except I don’t.

The word “accept” may imply those things, but lemme tell you, I’m unwilling and not the least bit receptive to my RA. I disapprove of it and frequently protest while I endure it. I don’t think it’s anything close to proper or normal, I have a very unfavorable opinion of it and I never agreed to it or obligated myself to having it in any way.

But here’s the thing: RA is incurable. It won’t go away—at least, not forever. It might take a very rare, lengthy holiday, and it might step out for a day or two at a time, but as long as it remains incurable, I can expect it to return. And because of that, I feel it will do me little good to deny it.

And so, I decided long ago to accept it. For me, that means that I acknowledge RA’s presence in my body. I acknowledge that it can and does do damage to my joints and might also damage other parts of me: my soft tissues, veins, heart and lungs, even my eyes. I acknowledge that it causes me sometimes awful pain, stiffness, senseless fatigue and sometimes, real disability, though I’ve been lucky enough not to be permanently disabled. So far. I accept all this about my RA because by accepting it, I also allow myself to learn all I can and fight this disease with every weapon—be it medicine, natural remedies, exercise, diet, meditation or simply a cocky attitude—at my disposal.

Then there’s that other word: “adapt.” I work daily to adapt to my RA. It changes constantly, so I sort of have to. Adapting means I don’t have to give up or modify everything I do, only some things—and not all the time. Adapting means I try my best to roll with the punches. I jig when RA jags. When it’s flaring, giving me a lot of pain, forcing me to move slowly and carefully, I alter my expectations for what I hope to accomplish for the length of the flare. When my RA is quiet I approach activities more freely, but still with a certain amount of caution, because even when I’m feeling well, it’s easy to overdo it and end up causing myself more pain and exhaustion than I want to go through.

Adapting also means allowing myself flexibility in my emotions. There are some days when even the ugliest flare won’t get me down. I’m tough. I know how to persevere, to keep my chin up. But there are other days when dealing with the pain, disability and the without-any-warning nature of a sudden flare is just beyond me. On those days I’m quiet. Sometimes I’m blue. I don’t berate myself or feel cowardly, though. I allow myself a little pity-party. Accepting and adapting to having RA requires a lot of strength and courage, so I give myself a break when I’m running a little low on both of them. Sometimes I just get tired. Still, I know—because I’ve done it so many times before—that I’ll be okay. Things will look up. It just takes time.

No one wants to have this disease. None of us who have it did anything to deserve it. Do I get frustrated that medical science hasn’t found a really good, non-addictive painkiller or even better, a cure for this rotten disease? Oh, yeah. But then I remind myself how far we’ve come and how much we’ve learned about rheumatoid arthritis in the 24 years since I was diagnosed. The drugs available today are much better than they used to be. I have to believe that they’ll be a lot better 24 years from now, too. In fact… by then, perhaps medical science will have cured RA. Maybe it will finally be a scourge of the past, gone for good.

You know what? I’ll accept that.