RheumaBlog

Same dragon, different day.

Kris’s post, Inventory, on her wonderful blog Letters from the Breach, got me thinking last night.

This is a good thing. I like to think, but I don’t do it often enough. Or, at least, not with enough conscious effort and careful consideration.

In Inventory, Kris wrote about the things she used to be able to do before she was diagnosed with arthritis – things she can’t do now without difficulty, or at all. She talks about grieving the “old me,” and how listing her losses has helped her to accept the changes in her life and move on.

This struck me as very wise. Kris is doing this very early in her experience with arthritis (she’s been diagnosed for just about half a year, and her doctors still aren’t sure if it’s rheumatoid or psoriatic arthritis; both types cause awful joint pain, fatigue and disability). I’ve had RA for more than 22 years, but I’ve never really thought hard about what I’ve lost to it.

This could be because even in the beginning, I simply adapted my activities so that I could continue to get on with things. It never occurred to me to do otherwise. Honestly. No one told me about the crushing fatigue that so often goes hand-in-hand with RA; I thought I was wiped out because I was so busy! Or because I was so busy and I was hurting. I made the connection between constant, debilitating pain and being tired, but that was it.

My day started with a hot shower, often taken while shifting from foot to foot because the soles of my feet were so sore it hurt to put my full weight on them, even after sleeping all night. I’d get myself dressed, my hair done and my make-up on. I had one pair of old, black patent leather pumps with low heels that became my go-to shoes for just about everything. I’d get my small daughter, Cary, ready for school, giving her breakfast, making her a lunch to take with her, helping her gather up her schoolbooks and get everything into her backpack, and then whisking us both out the door for the day. Cary would walk to the Department of Defense elementary school two blocks away, and most days I’d walk to the bus stop to catch a German city bus for the American Army post 8 miles away. And oh –I almost forgot. We had a wire-haired dachshund, Max. He needed his walkies every morning, rain or shine, whether I was hurting or not. Before we left for the day, I’d walk him around the block, usually limping behind him on the leash and cussing my flared toe or ankle or knee with each step.

Some of my work days were spent at my desk in the office, writing, making phone calls, writing some more. Other days my job required that I go out to interview people and take photos. I was a writer-editor for the U.S. Army Public Affairs Office in Northern Germany. We wrote and published the post newspaper, and it was a big area to cover. There were many days when I did my job while limping badly from a flared ankle, or while coping with a shoulder that was so painful I couldn’t lift my arm. I took notes with fingers that screamed with pain as I held the pen and wrote – and then had to try to decipher my own hen-scratchings later on. I went out to the field with the soldiers, interviewing and writing about them as they trained for war, blowing up Claymore mines and “shooting” at each other with electronic guns. I took photos of them, hoping that they’d turn out well in spite of my awkward, painful hands.

In short, I adapted to the attacks of my rheuma-dragon. Of course, there were days when I was in far too much pain to adapt to anything, and I’d have to call in sick. I hated doing it. But I was very fortunate: my supervisor and my co-workers were extraordinarily understanding. They saw me frequently walking with a cane, or limping, or holding my right arm against my chest as I tried not to move my shoulder – and working in spite of it. Kind people. Good people. And in return for their compassion I made sure that I always got my work done, well and on deadline. Whatever it took.

This wasn’t heroism or bravery. It was no more than what anyone with RA does. We do what we can, we live as best as we can, and we fill in the blanks as we go.

I wonder, really, what I couldn’t do because of RA. I have to think hard about it. It could be that I’m blanking out the bad times, too, but I don’t think so.

There were a few times when I had to bow out of taking long bike rides on weekends with my friends. We all loved riding along the dyke that ran the length of the northern coast of Germany: the North Sea on one side, the green farmland and coastal plains on the other; the thatch-roofed houses and farmyards; the little villages that sparkled on a sunny day. Still, it was always hellaciously windy and usually cold. Sometimes I just couldn’t face it, or one of my joints was flared badly enough that peddling the bike or holding onto the handlebars would be impossible.

And there were times when long walks were off the schedule, too. I loved walking to the big city park that was a quarter-mile from my flat. It was filled with trees and paths; one could easily use up a day just wandering around it. But some days my feet or a knee or a hip was just too painful. So I stayed home. Rested. Did what I could do instead.

What I remember about those years are the things I did in spite of RA. I can only shake my head at myself – I’m not sure I’d have the same gumption, or the same courage today. Of course, I’m a lot older. My energy levels are different than they were when I was in my early 30s and still invincible. And perhaps I’m wiser, too. I’ve learned my limitations better. Or … dare I say it? I know more now about my disease and it’s effects, and that knowledge alone can dampen my spirit.

Would I take on long days on foot to explore the ancient parts of ancient cities now, if I had a flare going in my foot or knee? I did back then; I didn’t want to miss out on the experience, and if I had to do it limping, then so be it. I remember clearly walking and walking, each step painful (and being hyper-aware of it) but also soaking up the sights, the history, the thrill of being able to put my hand on the wall of a cathedral just like some other woman did, 800 years ago; to feel the cold roughness of the stone as I marveled at the dedication, skill and sheer hardheadedness it must have taken to cut that stone to fit in with all the others, to raise its tonnage even a few feet, and all to form the wall of a magnificent building that I wouldn’t even be allowed to enter if I was very poor.

I skied the Alps – while I was flaring – because I wanted to have that experience. Those ski trips form some of my fondest memories of my time overseas – they’re simply unique to me, and unrepeatable. I gimped my way across the dead-zone between West and East Germany in the months after the Wall fell. It was a very wide swath of cleared land where nothing grew, in which the soil had been salted with land mines. I walked across it with an eye on the old, empty guard tower just a short distance away, knowing that just a year prior, my presence there would have caused an East German soldier to fix his rifle sites on me – and perhaps shoot me dead. I limped, leaning on my cane, and soaked up the somber history of the consequences of war and conquest.

I visited farmer’s markets, the city zoo, shopped the city stores, attended the seasonal festivals, got on and off the crowded city busses (often forced to stand, hanging on to a hand-loop for the entire ride), and I walked. Here and there, there and here. I took my daughter to soccer practice and went to games that took place in the cold rain, and humped the family laundry four long flights down to the basement laundry room and back up at least once a week. I carried heavy grocery bags up those stairs to our flat from the car. I did it all while being in sometimes awful pain, pain that could make me cry, pain that made me take the stairs so slowly that sometimes I wondered if I’d ever reach the top. I did it, though.

After returning to the U.S., I went hiking and fishing high in the mountains while flared with RA. I once took an unexpected whitewater rafting trip while covering a story for my newspaper – while my ankle was flared, then went to a friend’s home and cooked up a mess of crappie for a big fish dinner under the stars.

So I empathize entirely with Kris’s determination not only to list and mourn the things she can no longer do (or do as well), but also to make herself aware of how she’s grown and changed because of them. And I know (because this is how we’re made, us humans) that one day she’ll look back and realize that it’s not so much what she’s lost to RA, but what she’s gained. It’s not all physical. A very great deal of it is mental. We’re tough as nails, even if we look like we’re not.

We’re all Bravehearts; all of us doing everything we can do to live our lives with joy – and astonishing accomplishment.

2 thoughts on “bravehearts

  1. Kris says:

    Dear Wren,

    How wonderful to read your response! And fascinating to hear of your life in Germany and your determination in the face of this disease. When the rain lets up here, I’ll be getting the kayak out onto the lawn to sit in it and see if there are ways to add some padding and support that will make it workable. So much of this is about creativity: how do we find new ways to do the things we want and need to do?

    When my mom was dying of breast cancer and became very weak and unable to walk any distance, she refused to use a wheelchair. I’m not sure if it was pride or an unwillingness to admit she needed help. It makes me sad to think of all of the adventures we could have had together in those last months if only she had been willing to live in that new reality and accept help and accommodation.

    So part one has been accepting the new reality. Now part two–the exciting part–figuring out how to get on with life with a spirit of celebration. Your post encourages me and gives me an injection of courage!

    Peace, Kris.

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  2. Cathy says:

    As always Wren, you are so inspirational. You remind me of my mom. She has severe fibromyalgia but at almost 70 years old finally has the time and money to see the world and will visit three different countries this year! We are bravehearts. Our diseases may prevent us from some activities, but we adjust and find ways to make our life as wonderful as it should be. I love hearing of your adventures in Germany. It sounds like you took full advantage of your time there.

    Enjoy your weekend Wren. And, as always, thanks for keeping our spirtis uplifted with your positive take on life.

    Cathy

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