International MPN News, Science & Opinion

 

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

Comments on: "Harriet Gilbert’s Waiting Room" (6)

  1. She must of been a very strong and inspirational women. To be able to share with and learn from other MPN patients is a miracle in its self.

  2. Cyndy Morreale said:

    Zhen … its so nice waking up to your message of the day!! Even when you discuss the hell that is dealt with on some days you always mix in alot of joy and normalcy and Sam identifies so much. It helps to know that some symptom is the new possible normal.

    I love the new formats of both daily digest and Facebook!

    We came up to Happy Thought Ranch this weekend and Sam used his oxygen since you should have more hemoglobin, not less … He can’t tell if it helps but it bugs his nostrils. We got a gel called Ayr that seems to help. He struggles with bloating alot … the new symptom du jour that really aggrivates him. I think that might be the same think as dyspepsia that is one of the symptoms.

    But one nice thing is that through a neighbor I met a woman who was recently diagnosed with MF. Her name is Berrie and she only lives less than a half mile away from us. Berrie and her sister Barbara came up to Happy Thought for lunch this weekend. They brought Sam a small bottle of Makers Mark, his favorite medicine … I made a Tuscan spread of pasta and sausage and chicken and grilled veggies, cheeses and olives … We all pretended we were in Italy. We laughed and had such a good time. It really is a small world after all and how wonderful we can lift each other up!! Berrie is in the very early stages of MF and hasn’t gotten many of the symptoms yet but we’ll be there when she does …

    So many of you I wish I could have coffee with, or share lunch or a happy hour … This forum and Facebook is the next best thing!! Have a lovely day!!!

    • Ah, Cyndy.. A Tuscan spread, an al fresco lunch a l’italiano. with you, Sam, some old MPN friends and Berrie from down the road..that’s a clinical trial I’d sign up for in a heartbeat. There could be something practical and real about this. I’m going to take it over to the MPNforum Facebook page later this afternoon to see if we can talk about it over there Meet you at the table with the checkered table cloth under the olive tree. Capuccino and biscotti for me.

  3. ….and I thought I was ALONE – in the waiting room! I relate to the “leaden legs”, PAIN – and NOTHING takes it away. I spend 24/7 seeking a restful, pain-free, deep, restorative sleep, but it does not come, so I begin each pre-dawn the same — just enjoying what I can. My senses are sharpened to the BEAUTY of everything around me – too numerous to list and the people in my life and every celebration life gives. Thankful for every day I am able to just be on aspirin and Phlebotomy therapy, hoping I can just maintain. My heart aches for those who must add foreign substances to their body to be able to exist. I am so blessed to be able to be in my home with family who care for me and do all the things I used to be able to do – and took for granted. Now I sit and wish I could be that person – once again. Some days I try, but I am quickly met with “the snake” within, as Zhen calls it who does rear it’s ugly head in defiance of anything productive I cherish. I’m finished w/home health services as even they cannot understand WHY I cannot always comply with their efforts to mobilize me. Every effort brings unbearable pain. They have compassion, but like many, cannot really fathom “chronic pain”. Nor my desire to NOT be further impeded by medications that might rob me of my little remaining independence. I am so grateful for loving family! They are my best advocates, and for them I am encouraged to keep silent for as long as possible because they cannot bear my loss, my grief, my PAIN and sometimes, my fear – and definitely not my tears. Maybe the change of season has put many in the “MPN hell” this week as I too spent a brief time there – aching biceps. I was once so strong! I could lift a log, now lifting a pencil is painful! WHAT HAPPENED!? Oh, I keep forgetting – for some yet unknown reason – a gene mutation happened! If not for that event, I am incredibly HEALTHY!

    Anxiously awaiting my DNA results and I will be very interested in all aspects of it. My husband has an amazing “geneology” – The Brothers Emery, Anthony and John, arrived in Boston in 1634 from England and the lineage is golden, as they say, but I was born of a bigot and an adopted mother and have never really known much about my ancestry, so I am hoping it was good stock – back there someplace!!!!! Sheridan

  4. … u’ma-nayim Shevet akh-im gam ya-chad.

    This is the continuation to your Jewish Hymn, simply saying how nice it is to be together.

    Zhen, we go involuntarily to this dark places, I was the one who was in hell last week (with many others, I am sure), but I came back, I had a reason to come back and big part of it is this group and the fight.

    I think that most of us know what you wanted to say, I had a friend, a cancer patient and an amazing women. She always said “You can go to Pityville, but you can’t stay there”. I live by that.
    Moshe.

  5. Phyllis Vaught said:

    Than You for this -it is beautifully said -so often during my day I think of Others who are challenged by an MPN and wonder how they are coping – I look forward to hearing from each of you.

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