MPNforum Magazine

Harriet Gilbert’s Waiting Room

Somehow, I blew it.  Back at work today, back into life with the bright wind and burning leaves of a sunny chill October in the mountains, that other MPN life came rolling around and everything seems possible again.  Maybe even likely.

What I meant to say got mixed up in the saying.  Thank you for all the sympathy, but that’s what you get when you roll the dark side up and exhibit your wounds.  I wanted to share something else and must have stumbled in self pity at the sight of my own shadow.  So I’m going to try again.

      There’s a short section in the Joyce Niblack article  I’ve been working on called “Harriet Gilbert’s Waiting Room.”  Joyce talks about “my experience of the sharing that went on in her waiting room and it was marvelous.” My post on “Facebook and the Double MPN Life” was an attempt to share an insight into the value of us coming together –  the warm family gathering  – in light of that other reality we share, bearing a mutant clone – the snake – in that most isolated, deepest hidden and darkest part of our bodies.

At the end of Joyce’s story, she is in the grip of myleoproliferative neoplasm hell with all its allied forces and still you see her reaching out to share, slurring her words but determined to offer advice, encouragement. It is a moment of heroic grace, transcending the flesh and snatching victory from the crushing jaws of defeat.  She will lose her life in the end.  We all will. But the disease could not crush her spirit.   We’ve seen it here.  Karl’s humor, Sam’s painting,  Jeremy’s cycling…Barbara Kurtz said it in her comment…the list is endless, the endless things we do to lift each other’s spirits, sharing as an antidote to despair..

That’s all I wanted to say.  That spirit is nourished by us coming together.   The MPNforum, the Facebook page, the e-mail lists, support groups  are all Harriet Gilbert’s waiting room one way or another.  And as long as I was sitting there last night in the waiting room I wanted to shout out to our brothers and sisters who were in crisis right then that we’re here, together, and thank you all for being there for me.

Hinei ma tov…

    Zhen