Posted by: sistermom1 | February 21, 2011

It’s a flexion contracture

At my physical therapist’s suggestion, I met with an orthopedist about the trouble that I have been having straightening my left leg, and the difficulty that she has had working with it.  She is a great therapist with strong yet gentle hands and a wonderful demeanor, so I immediately acted on her comments. 

I looked up a local surgeon who is close-by and who had a great reputation.  I was able to meet him fairly quickly and we had a good meeting where he confirmed that yes, I did have a flexion contracture.  He referred me to a colleague who he described as a “rehab orthopedist” (who knew about the sub-specialty?) and I was able to meet with him yesterday.

My brother was able to take me to the doctor, and for the first time since my diagnosis in 2005, I went into the consultation alone.  This meant I really had to listen carefully, ask good questions and even ask the doctor to repeat himself if necessary.  I have written before about being an empowered patient.  Here was my first real chance to become one in real time, and I did well.

The doctor was a character — he was younger than I, a bit paunchy and balding, with a style reminiscent of Will Ferrell in the movie “Elf”.  Clearly experienced with managing spasticity, and the surgical and non-surgical options available to me, he spent a lot of time answering all of my questions, waiting to make sure that I got the answers I needed.  If anyone is going to operate me again, I left feeling very comfortable with him.

I learned that I have a fairly extreme example of spasticity — one that the doctor knew a lot about.  He described easily so many of the situations I find myself in when my legs do not agree with what I would like them to do (truthfully, this is really most of the time).  He was candid about what improvement I could expect from each option, and totally impressed me with the depth and breadth of his experience.  It was an easy and comfortable place to start.

At this point, I am in the midst of  determining exactly what to do.  I have several options, but won’t  jump to any easy conclusions.  Praying for wisdom and courage as we move forward is my first step.   I have been reading Mark Nepo’s book, and in it he wrote that “we seldom become all of who we are until forced into it.”  He shared that illness, or tragedy often pushes us into a space where we are forced to live differently — hopefully to live more authentically.  He shares something that encouraged him at a difficult time when he was facing an extreme health challenge:

“Death pushed me to the edge.  Nowhere to back off.  And to the shame of my fears, I danced with abandon in his face.  I never danced as free.  And Death backed off, the way dark backs off a sudden burst of flame.  Now there’s nothing left, but to keep dancing.  It is the was I would have chosen had I been born three times as brave.”

Although a flexion contracture is not anywhere near a death sentence, this adds another experience to what has been a real challenge for me — something that has pushed me to live every day in a more honest and open way.   I may not yet be dancing, but even with this latest development, I feel better about things than I have been feeling over the past few weeks.  I am keeping my shoes ready for my big dance……



  1. Linda, I look forward to dancing with you. Thanks for a beautiful post. Sending love. — lorraine

  2. whatever decision you make will be the right one, Linda, because you are listening with all three centers of intelligence – body, heart, mind.

  3. Dear Linda: I am your mother’s friend and neighbor at VPE. What you have written and the quotes you’ve included really resonate for me. I also have a copy of “The Little Prince,” and I take line and folk dancing classes. I find dancing very expressive of life’s different experiences. Some dances, I’ve learned, are actually choreographed to prayers, and I do sometimes feel as if I’m praying.

    Best wishes from Ruth

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