Changing it Up

No one likes change. That’s what we say when circumstances force it on us. Yet our minds are like busy monkeys, always leaping from branch to branch, endlessly active and curious. We bore so easily! We love to be entertained, to be amused. As a result, we seek change and embrace it wholeheartedly and with enthusiasm—at least, when it’s our own idea.

I think that’s the rub. It’s not change itself we don’t like. Obviously, when we take that great new job, rearrange the furniture to freshen up a room, or try a new sport or hobby, change is a part of the equation. We like it, want it, and accept it easily.

But when we lose a job, or come home to find our spouse has replaced our old, broken-down-but-deliciously-comfortable armchair for a sharp, new, in-style model, change feels awful. Forced on us, it’s painful. It leaves us bereft, lost in the wilderness without a guide, discombobulated. Sad. Angry. Even fearful.

Rheumatoid disease forces changes on us from the moment it first appears.

My own rheuma-dragon first affected me in many small, irritating ways. Here's a memory: I reached over in the velvety morning dark to slap the alarm clock into silence and stopped, suddenly, because doing it hurt my right shoulder. Whaaa? I shifted a bit, gritted my teeth, and tried again. Successful this time but shocked at the pain, I sat up in bed, wondering what in the world was wrong with my shoulder. I hadn’t done anything the previous day to hurt or strain it. Yet—I moved it gingerly—it hurt a lot. If I sat still, it just ached in a vague, sick, low-but-unignorable way. Moving it, though, caused a breathtakingly sharp, lingering jab of pain. Wow.

Must have slept on it wrong, I thought, and trudged off to the bathroom for morning ablutions.

That shoulder hindered me as I showered, dried and styled my hair, dressed myself, and as I made a bag lunch for my daughter. It yelled peevishly at me every time I shifted gears driving to work. At the office, it hurt like a you-know-what, just hanging there off my body (as shoulders do). This forced me to cross my arm protectively across my chest, resting my hand at the hollow of my throat. My slept-wrong-on (??) shoulder forced me to change how I sat, how I walked, how I did the smallest things—making coffee, keyboarding, everything. Acetaminophen had no effect. Then, around mid-afternoon, the pain simply vanished. Poof. It left no evidence of having ever been there at all. No twinging, no stiffness, not even any tenderness.

It was like I’d dreamed the whole thing.

During the next six months or so that strange pain reappeared in both shoulders and a variety of other places: wrists, fingers, knees, ankles, and feet. Each time was inexplicable. Each time the pain came on fast and disappeared the same way. Each time I explained it away: I slept on the offending body part wrong. I had new shoes. I must have bumped or twisted it without noticing…


It was just the beginning of decades worth of forced, daily change. Planned a weekend bike outing with friends? Sorry, call and beg off an hour before meeting them: bending your right knee is suddenly agonizing. Enjoying a pleasant, springtime morning wander around the Saturday farmer’s market? Well, cut it short. Out of nowhere there’s a crushing, excruciating pain each time you put any weight down on your left foot. Working hard to finish those stories on deadline? Ignore your hands, both of which are yelping urgently with each light touch of the keyboard. Stick with it. Deadlines are deadlines. And smile.

RD causes the kind of changes we hate. They’re the ones that are unplanned, unexpected, and forced. But unlike most of that type, RD changes are frequent. Since my diagnosis three decades back, my rheuma-dragon has forced me to change—sometimes in small ways, sometimes in big—nearly every single day.

Maybe I’ll have to abandon preparing a meal I was looking forward to: my hands are now too tender and painful to chop vegetables and handle heavy pots and pans. Instead of my jeans, I’ll wear those (admittedly ugly) pants with the elastic waist—buttoning and zipping with each trip to the loo just plain hurts too much. Instead of spending an active day out, walking and exploring new places, I’ll stay in and read or watch movies. My feet scream with each step. Tomorrow, though, I might be able to go. Really—I might.

Sometimes I wonder how different my life might be if rheumatoid disease hadn’t set up residence in my body. Maybe, back when I was in my prime, I might have tried a different profession: I had a fascination with being a paramedic, after all. But that kind of work was out of the question with RD. Maybe I’d have become a foreign correspondent, or a travel writer, or a better skier, or a more avid hiker. Who knows?

I surely don’t. But I think I’ve done pretty well in spite of RD. It's made me extraordinarily adaptable. If I can’t do this, then I cogitate around the obstacle and do that, instead. The dragon has given me strength, resilience, and tolerance that I might never have developed without it. Pursuing happiness—and even joy—in the face of daily pain and frequent disability has made me extraordinarily sensitive to the small gifts life offers. You know what they are: the kiss of a cool breeze on a hot day, sudden birdsong, the scent and eye-popping color of geraniums, etc. RD has also made me extremely empathetic with others. I may not know your pain, but I get it.

Change is often hard. Very hard. But I believe how we choose to approach it can make all the difference in the world.

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