The Vocabulary of Pain (gratuitous prose)

I wrote an article for my adaptive outdoors organization, pretty much my first piece of serious prose since my last brain injury. I'm proud of it, so I thought I'd share.

The Vocabulary of Pain

I was diagnosed with rheumatoid arthritis in November after several years of increasing joint pain. This is only the latest in a long list of chronic conditions that haunt me, but it has been difficult to find my equilibrium. RA is a disease of the immune system, one which can affect any system of the body, and not just the joints. The drugs used to treat it are immunosuppressants, and can be as hard to deal with as the disease itself. This has not been a fun ride, but as I slowly come to terms with it I find myself learning the words pain wants to teach me. They’re small words, easy to say and hard to forget. Words like ‘can’t’ and ‘don’t’, words that limit and corral me in new and horrible ways. Words have always been my friends, my dearest companions in dark places and hard times. It has been awful to listen to the slow decline of my inner vocabulary into syllables of defeat and depression.

Then Kerri called me from CRIS Adaptive Adventures. She offered me time in a kayak, on an adaptive hike, time in a recumbent bike. Last week I joined the summer students on the KVR. The day was perfect for August; hot and clear with a clean little breeze to dry the sweat and keep us smiling. I heard that inner monologue change. All of those nasty little defeatist words crumbled under the power of one more – adapt. I can adapt. I will not listen to pain any more. It has a place in my life, but I will not permit it to rule. CRIS gave me back my summer, gave me back the sense of who I am. I am more than pain says I am, I am capable and adaptable and I am strong. Society seems to equate disability with weakness, but this is far from the truth. It is my adversities that strengthen me, that give me a breadth of experience that can benefit not only me, but others. I can change the vocabulary of my pain because I must. I thank CRIS for giving me the people and places that make this change possible.


the indomitable

7 Replies

  • Excellent! Thanks for sharing this. There are lots of things you can still do with a little creativity and a lot of determination. I am off to play Pickle Ball shortly. Have a great day, Doreen

  • Brilliant! As I would have expected. I wish there was a CRIS here. I can't even find a hydrotherapy pool that is convenient and affordable. There is one brilliant one, very close to home - but it's just for dogs! It'd love that but its probably not considered hygienic.

    When you feel low, read that article you wrote. You deserve to be proud of what you have achieved, and that includes writing the piece.

    Jo xxx

  • It's so hard to find the mental space to be reflective, and so much easier to trudge on day by day battling through. So hugely impressed that you've managed this, and had some fun adventures along the way as well.

  • Well done Bats it is spot on - just as your writing usually is. I think you are right to put the word "adapt" up there. In fact I'd have it in neon tubing!

    My life has changed out of all recognition since RA started five years ago. I would say that as many of these changes are good as are bad. Chronic pain is transformative - through it I've met some of the most vibrant and perceptive cyber people, a few even in the flesh.

    I sense you would be a delight to meet in person - not least because of your ability to cut to the chase with words.


  • I am so happy you have something like that to enable(thats another word for you enable) you to do the things that YOU want to do not what the disease dictates you do.xxxxx

  • You have a beautiful way with words Bat x

  • This is so "right on" on so many levels. Thank you for sharing. You really have a gift of expression and feeling. :-)

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