I was sitting in the back row next to my wife, sipping my coffee and listening to the stories going around the room.  This was a meeting of our Trigeminal Neuralgia support group and today was “shared experiences” day; a day in which each in turn told of their personal experiences with their pain and treatment and how they handled it.  As I was listening, a thought crossed my mind; so I raised my hand and was recognized by our moderator Mrs. Daniels.  Fayne Daniels was the founder of our support group and its backbone.  Today she is sitting in for Tim, our group leader who is absent because, it is rumored, his pain has returned. 

I stated my observations; and when I was done, Fayne said, “that was very good Art; will you please write that down and bring it to our next meeting?”  I thought she was kidding, and I looked to her for a smile.  She was serious.  All of a sudden I was back in school; and Miss Stibbs, my English teacher, had given me an assignment.  You didn’t say no to Miss Stibbs, she was very demanding.  Mrs. Daniels was not demanding, but she does have an authoritative demeanor.  I murmured O.K. and shrank back to my coffee. 

What prompted this incident was, that as I listened to everyone’s story, I realized that while we all experienced the same excruciating pain, each one described it differently.  The same was true of our reactions to our treatments.   

Tim had a Gamma Knife- his pain had returned.  Mrs. McCourt has a post procedure itching on her scalp that won’t go away.  Milt is considering Chiropractic. 

Lillian’s pain is under control and she is making vacation plans.  I had an alcohol block and radiofrequency rhizotomy.  I have been relatively pain free for over thirty years- except for the occasional episodes that won’t let me forget.  Jean hasn’t stopped grinning since she came in.  She had a Gamma Knife and it was obviously successful.  Fayne has had an R.F. Rhizotomy and an M.V.D. Today she’s finding it difficult to speak.  Perhaps that’s why she didn’t smile.

So I stated to the group that as we try to describe T.N., we are like the blind men who were asked to describe an elephant.  The fellow who grabbed the tail said an elephant was tall and straight like a tree.  The lad who grabbed the tail said an elephant was long and skinny and he smelled.  The tall man who grabbed a flapping ear said an elephant was like a big butterfly.  And while they didn’t get the whole picture, each one was correct in his own way. 

Unlike the blind men, our group is comparing notes and slowly a picture is emerging of this Behemoth that torments us so.  And by sharing and looking for solutions and treatments and working together maybe- maybe someday we will find that elusive little mouse that will send this monster scurrying!

Updated 8-23-05