Learning to Live

It has been an amazing week.  We ditched the house — where the heat had pretty  much kept us confined to quarters — and headed out for White Sands National Monument and Carlsbad Caverns with only a day to rest in between.  The kids had an amazing time (as expected).  And so did I (not so much).

And the fact that those two are separated bears some explaining.  You see, a little more than a year ago, I was diagnosed with Rheumatoid Arthritis.  For most of you, that’s just a couple of words.  It doesn’t carry the heavy weight of dread that those dealing with chronic pain understand, whether the pain is from Fibromyalgia, MS or RA.  The dread is born of the fact that disorders that cause chronic pain do not just affect the body, they affect the mind.  The pain is debilitating.  The fear of pain is almost worse.

There is something uniquely terrifying about knowing that your body is betraying you.  After that first attack, when all you know is pain and inflammation without understanding what is happening, and after the frustration that lasts however long it takes to get a diagnosis (and if you are a woman, this can be a very, very long time), comes an understanding.  You start to anticipate the attacks, or flares.  Swelling.  A mild ache.  The little nagging feeling of being unwell.  Once you notice, the dread floods in and it is as incapacitating as the pain that you know will follow.  Oh.  Right.  So here it comes.  I have a day maybe to get get stuff done before I’m bedridden.  The fear eats away at the core of who you are faster than the pain.

Because the fear will cause you to stop living your life.  Oh, you think, okay.  Going out in the weather causes a flare?  I won’t go out, then.  Overdoing it with physical activity leaves me curled up in bed the next day, staring into space senselessly because it hurts too much to cry?  Well, then, I’ll avoid physical activity. 

Trying to explain the pain so that the person I love most in the world will understand that I don’t want to be like this makes him sigh with exasperation because no healthy person can understand?  I’ll just swallow the words, then, until the resentment grows wild like a bramble and its thorns puncture new wounds into me or him or us.

Bit by bit, the fear leaves the joy you felt in the things you loved – being out in the world, exploring, even your relationships – pitted and corroded. 

This week, I took them all back and shined them up.  I took my children out to sled down tall, shining dunes of white gypsum.  I climbed up the shifting hillsides with them, toes and ankles flexing for a grip.  And my mind said, You know you’ll pay for this later?  I told her to shut up and planted my fanny on that disk sled for a ride down the hill to the hoots, laughter and delighted squeals of my children.  Whatever comes next will be worth it, I told myself.  And it was.

The next evening, aching and tired, the invitation came for Carlsbad Caverns.  My thinking (fearing) brain told me it wouldn’t be smart — two to three hours of strenuous walking down a wet, slick trail into a cave on irritated joints?  Not a good idea.  But the me whose imagination was fired every time she made that descent when she was younger?  The me whose younger children have never heard the singing of the cave swallows darting above as they walked out of the light into twilight and then into darkness and the soft dripping of living rocks?  That me said, Oh, hell yeah.

So we went.  And it was wonderful.   Take that, RA!  I crowed. 

That bitch is laughing in my face this morning.  The pain is terrible.  I want nothing more than to curl in bed, a ball of misery to lock the world out until I can function again in a day or a week or however long she decides to torment me.  But I won’t.  Not this time.  The memory of this week is still fresh and real, and it is stronger than the pain.   I’ll hobble around, hurting, dealing with it.  I won’t be myself.  No.  But I won’t be that temporary invalid, either.  Not this time.

I think I’m finally learning to live with this disease.  It isn’t about avoiding the life I love so that I can spare myself pain.  It’s about using that life to keep the pain at bay when it inevitably claws its way out of my body to drag me down.   I know I won’t always win this battle over pain and fear.  But today I’m wearing the new memories I made with my children like armor.  And this time, I’m winning.

Take that, RA.

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6 Responses to Learning to Live

  1. Great post! We went to PNC Park yesterday, and the short walk from 10th street to the 6th street bridge and across caused my arthritis to flare up. I can hardly walk across the kitchen, and every step is a teeth grinding effort not to scream out loud. Definitely nowhere near what you endure.

    • myralang says:

      It’s tough, isn’t it, Michelle? The memory of what we used to be able to do is like a huge tease. I’m with you on the barely being able to walk. My knees gave out a little while ago after I slid off one of our high dining chairs, and I ended up plopped on the floor. But you know what? We’re still functioning, still walking and getting done what needs doing, and still not screaming. I’d say that’s a good day!

  2. Janet Fawcett says:

    These autoimmune maladies run in our family, as you probably know. My great grandmother Lucy Call probably had RA from the family description of her symptoms. My mom had lupus and fibromyalgia. Her sister, my Aunt Ginger (your great aunt), was diagnosed with RA when she was 17. Ginger moved in with our family for several years before she married so she could get medical treatment nearby. I saw first hand what she experienced, and my heart goes out to you. I admire you so much for your determination to move forward and live your life on your terms. You are an inspiration.

    • myralang says:

      Thank you, Janet. It means a great deal to me. It has also been very helpful knowing the family history (and which I got from you!). Have a wonderful evening!

  3. John Call says:

    Thanks For The Reminder That The Struggle Up The Shifting Hillside IS Worth The Short Laughter-Packed Ride To The Bottom. AfterAll, If Life Is About The Journey, Not The Destination, What’s The Point Of Slogging Upward Constantly If You Don’t Take The Moments To Zip Joyfully Down Again?

    PS: not Sure What’s Up With The Capitals. Driving Me Crazy, But Don’t Have Time Correct It All On My Phone!

    • myralang says:

      I kinda like the crazy caps. 😉 I’m glad you enjoyed it. If only we could store up those laughter-packed short rides to fuel the long slogs a little more efficiently!

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