On That Clear Day…..or The View From The Hamster Wheel.

Earlier in the week, I had a follow-up with my surgeon.  He’s my pain management doctor. It’s been almost two months since the pump explant surgery. Two months since post-op complications made healing difficult. And, admittedly, I’ve been very angry.  I’m still angry. Although, my rage has ebbed a bit.  

No one wants any aspects of an operation to go wrong.  No one even wants to have surgery in the first place.  But when the choice is made, when our bodies decide for us, we’re forced to give in.  I could probably have avoided surgery if the pump wasn’t causing irritation and tissue breakdown within my abdominal wall.  It was painful, trying to cope with having the non-functioning hockey puck protruding from my side.  But if I’d had a choice…..really had the choice?  Alright, I’d still want it out.  So out it came. However, I never anticipated the spinal headache, spinal fluid leak, hematoma or I.V. infiltration.  If I had, you can be sure I’d have protected my “good hand” better. 

Years ago, when all of this was a distant unknown, I told my husband that I could handle limping. Struggling along with crutches and then a cane, I resented the pain I felt with each step. I felt low and bitter about the back pain that would flare and suddenly render my legs useless. But I maintained that I could handle these battles, despite the poor gait and slow-going.  What scared me was the thought of losing the full use of my hands to RSD.  But that seemed impossible, at the time anyway.  It frightened me.  So much about RSD was a vast unknown, any horrible scenario seemed viable.  Years went by with some improvement, some setbacks.  RSD doesn’t play fair.  What disease does? 

First, the feet.  Then my legs.  My back had always been a problem.  I went through my life for nearly thirty years, never knowing I had a congenital spinal defect. Then the left side of my head, pain when I washed my face.  But my hands? I can write with my left hand, but it’s not very strong. A poorly-placed, infiltrated I.V. ensured that for me. But my right hand was still ok.  My right, “good” hand, managed to lift and carry just fine. Always in the back of my mind: Not my hands. I write.  I sew. I create things!  

At the time, I was designing and making intricate beaded jewelry.  Bracelets, necklaces – all painstakingly created and sold to friends and family.  People ordered pieces for the holidays. I thought of it as a form of physical therapy. Then came the day when I couldn’t pick up the beads easily, or manipulate the tools. Finally, I sold my last piece and stopped creating.  My fingers wouldn’t cooperate! All of those tiny beads, it was too difficult.  I moved on. The cases of shiny clasps, fine wire and colorful beads on my shelves, serving as a reminder of what feels like another life.  

Knitting was fun. I made scarves, small blankets even.  It was painful but manageable.  Always thinking that it was therapeutic, I slowly created row after connected row.  Finally, I had to stop because my hands stopped acting as willing participants.  

As a child, I remember my mom and eldest sister teaching me how to sew.  We were making tiny “Holly Hobby” Christmas ornaments. They were small, lace edged pillows. We worked together, finishing each tiny stuffed decoration proudly.  That was when sewing became real to me. I could sew!  I made (this or that)! It was exciting. Watching my talented mom design and create – from scratch – my first Communion, confirmation and high school graduation dresses was awe-inspiring.  It made me feel special.  Years later, with my mom’s permission, I deconstructed my old party dress.  After hours of cutting and hand sewing, I’d created a Queen of Hearts Halloween costume for my baby sister.  It was fabulous! For a fourteen-year-old anyway.   

Years later, I was mending my own clothes whenever possible. Buttons, tears, small alterations here and there.  I designed and created Halloween costumes for my daughter.  One year, she was a cupcake!  It was probably my best design, mainly because it was such an improbable, outrageous costume.  It was entirely hand-sewn.  She looked adorable!  Then, she asked for a witch outfit. We had so much fun! It was a thrill like no other. “Yes, I made this costume.”  

It was during her elementary school years that I volunteered to assist with the costumes for the musical.  It was a frenetic ball of crazy, but I loved it. After moving on to middle school, my daughter majored in graphic arts.  I only mention this because when the call for dance program volunteers sounded, I felt it would be alright.  Definitely not falling outside the jurisdiction of the “Oh no! My mom is here!” volunteer code.  She was waaay upstairs, I was waaay down in the basement.  And I did ask her first. 😉

Years later, I am still the costume designer and wardrobe technician for the dance program.  It’s one of my happy places, despite the silent screaming taking place in my head near showtime.  My mentor has been a driving force behind my return to school. Even as I write this, I’m thinking about the current school year and it makes me smile.  But then I remember my hands.  The spasms make them hard to ignore.  

So, I sat in that doctor’s office a few days ago, telling two sweet Doogie Howsers, (aka very young medical students), my story.  One asked me questions and took copious notes. The other sat, quietly typing the answers into my online chart.  I reminded them why listening to their patients is so important, why it matters at all.  After a long while, they excused themselves to report to my doctor.  All three of them returned to the examination room.  My surgeon had clearly heard my feelings on “the great right hand debacle of 2016.” He apologized again.  Then we talked about how to deal with my current state of health. It wasn’t too long ago that we were cutting back on my oral meds.  Suddenly, the daily number is about to increase again.  It’s not the best feeling.  Two steps forward, ten steps back. 

When the visit was over, each of the four people (including my mom) in front of me mentioned having hope about our new plans working. Stopping the conversation, I explained the following: I’m not operating in hope anymore.  It’s really not about being negative or morose.  I’m being realistic and honest.  After thirteen years of minding my own business, unassuming and managing each symptom and crisis as they occurred, I got my hopes up big time. Enrolling myself in school, thinking about future career options.  It all blew up – repeatedly – in my face.  So for now, I’ll let other people hope for me.  If good things happen, great! If not, then I’m not going to be as burned by it.”  And that’s the truth of it.  Not good, not bad. Just being.  Really.  And I write all of this with a smile on my face.  

On that clear day, when a new plan was made – one that I haven’t fully accepted but don’t seem to have a lot of choice in the matter – I found myself starting over.  Again. It’s like perpetually being on a giant hamster wheel.  A wheel, I imagine, that’s been secretly powered by hope all along.  

Peace & painlessness, 



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