May 17, 2014

A Story I Don't Really Know How to Tell

Back in December I wrote about being sick with something, something virusy -- or not -- painful, curious, concerning, unknown.  Back then I made a superstitious promise to myself that I wouldn't write any more about it, that it didn't make sense to write any more, until and unless what I had or have had a name.  But because whatever it is has continued to consume my thoughts over weeks and months, I've been resigned to writing nothing at all.

It still feels as if it would be easier if it had a name.  There are candidates:  myositis or polymyositis; fasciitis; inflammatory myopathy.  I wonder if it matters.  For now, 100 daily mg. of prednisone says it doesn't.  We've narrowed it down, started to treat it.  It.  Me.

I don't know how to talk about what's happened to my body without its feeling like a string of complaints.  Does it help if I first acknowledge that, maybe beyond reason, I don't really feel sorry for myself?  I don't wonder why this is happening.  Things, trials, struggles, happen to everyone.  This is mine.  And my family's and friends', because they have to fill in the gaps that have opened in our lives as I sit on the couch.

Maybe it's better to start with what I can do.  I can walk.  I can feel; this is a muscle problem, not a nerve problem.  I can think and type and talk.  I will live, maybe not into my 90's, but what were the odds of that anyway?

But there are many, many things that I cannot do.  I can't get in and out of bed or the car.  I can't drive.  I can swallow only with difficulty.  I can't sing the high notes, because my diaphragm is so weak.  Mostly I can't lift my legs from the hip or my arms from the shoulder.  That encompasses a lot of things I can't do.  I need help with showering and dressing and lifting a glass of water to my mouth.  I am using a walker, mostly because my weak neck makes me feel unsteady and off balance, and I do not want to risk a fall.

People who see me know this is happening.  The people who live with me know that I am a little, teeny, bit better since I started on the prednisone -- I can reach a little further, control my muscles a little better.  But I'm not stronger, not yet.  I've lost a lot of muscle mass, because my immune system decided that my muscle tissue was the enemy.  Muscle doesn't regenerate on its own or over night.

I think we imagined a different timeline, one in which I would start taking these powerful drugs and start getting better, back to normal.  Instead, as I begin to add to my network of friends others people living with muscle disease and hear their stories, I realize that this is going to be a long road; as one wise new friend frequently reminds me, this is a marathon, not a sprint, and my training has just begun.  My exercise regime, prescribed by my physical therapist, is done lying on the bed, because I can't lift my arms against gravity.  I exercise my hips by practicing rolling over in bed without help.  This could take a while.

And it, whatever it is, is chronic.  Some people recover more or less completely.  They achieve remission, on or off medication -- steroids, immunosuppressants.  So back to normal is relative.  I won't be the same.

I'm not the same.  And I am.  And I honestly don't quite know yet what that means.  The questions that have pervaded my thinking since this season began are Who am I? and Who is God?  I thought I knew.  I did.  I was wrong.  My self-image was not comprehensive enough to make sense of a me who is effectively disabled and will be for the near future.  My image of God was not big enough to encompass life with chronic inflammatory muscle disease, disability that leaves me utterly dependent on the kindness of others for my most basic needs.  But it should have been.

What I thought was that I knew us, God and me.  I was mistaken.  Without even being aware of my arrogance and ignorance, I thought I had moved beyond mystery.  I've done my emotional work.  I pray.  I got this.

Now I am plunged into deeper depths of mystery.  I have utter confidence that God will bring from this trial blessings for me and for others.  But the road is not an easy one, for me or for others.  It's a lot to process, and I've just begun.

Many people around me have been urging me to write through, so here I am, even though I still wonder if I really know what to say.  Maybe we can discover together new paths forward.  If you're game, I'll be here.  Check this space.


  1. Such lovely writing and you have described our disease and our journey so well...Continue to pray and focus on the horizon.

  2. So beautiful:::with so much dignity and grace! YOU are a blessing!

  3. You are a beautiful, strong and vibrant woman. I am grateful for the influence and love you have brought to my life. I will pray with you. Love you!

  4. So happy to see you back here! Love you! Kristen

  5. Sweet Chris so this is what it's become? What we were talking about way back at Rosemary's house? Holy Schmoly... You are, you are a beautiful, strong, vibrant woman of God. I also anticipate the blessings because there with be blessings, for sure... I love you... Jean Simmons