About feeling overlooked and, well, damaged...

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Binney4
Binney4 Member Posts: 8,609
edited June 2014 in Lymphedema

LE is a blow. It's ugly, it's chronic, and the medical folks (not to mention our community at large) tend to dismiss it. And us. I hope it's okay to post a link to an article I wrote for the online magazine, LiteraryMama, thinking through what it means to be overlooked. My husband and I have a couple of kids with disabilities, so we've been dealing with "chronic" and "differently-abled" for a long time, and I wanted to affirm the worth of all of us who struggle with having to re-define our self-worth because of disabling conditions that others may not even understand. Though it's not strictly about lymphedema, any of you, my fellow lymphers, will "get it":

http://www.literarymama.com/columns/seniormama/archives/2013/09/overlooked.html

Gentle hugs,
Binney

Comments

  • proudtospin
    proudtospin Member Posts: 5,972
    edited September 2013

    Binney, we all know you are special but you are special in so many ways

    thanks for sharing your life and thoughts with us

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2013

    Binney that is a heart warming and well written peice. It is lovely to see more of the life of a most valued person on this board, who has for years selflessly encouraged and helped others.

    Warm Hugs. Kiss

  • carol57
    carol57 Member Posts: 3,567
    edited September 2013

    Binney, I truly look forward to your column each month, and this one is so insightful! What a wonderful writer you are!

  • ballet12
    ballet12 Member Posts: 981
    edited September 2013

    Binney, that was really, really beautiful.  I evaluate children and young adults like yours and they are my favorites, much moreso than the higher achievers "in the classic sense."  You (and they) are truly blessed. And thanks for the reference to the lymphedema.  I don't have it, but my dance teacher does.  It's very severe, and at all times, she covers up her arms with long-sleeves (over the compression sleeve), every season, 100 degree weather, etc.  Since she also teaches many exercise classes (yoga, Pilates, balance classes, personal training, etc.) she doesn't wear a glove or gauntlet, even though she probably needs it, but she doesn't want to call more attention to herself than necessary.  It is actually interesting that (due to the long sleeves and no glove), individuals new to the classes sometimes don't notice anything, even though the arm and hand are really ballooned out and you can even see it sagging at the elbow from all of the lymphatic fluid.  She had IBC in one breast and triple negative IDC in the other and had, aside from bmx, axillary node dissection including tertiary level nodes, as well as rads to the axilla, chest, back, collar bone, etc.  (also a bone marrow transplant). Why I am saying this is that I know that she has said (kind of what you said) that cancer treatment and of course, lymphema can feel ugly and chronic.  She's not one to complain, but when she has vacation breaks between classes, she can develop severe pain in the shoulder/arm/wrist/hand.  Hardly anyone knows this, certainly none of her students/trainees.  She did confide in me because I've become a friend (as well as a student), but she keeps it private for the most part.  So, while I can't "feel" lymphedema, I can feel the consequences (pain, reduced manual dexterity), and see it every week, as well as what one remarkable person can do with it or despite it. And yet, it's very hard. 

  • BeckySharp
    BeckySharp Member Posts: 935
    edited September 2013

    I loved your article as usual. Thanks Bonnie!

  • carol57
    carol57 Member Posts: 3,567
    edited September 2013

    ballet, your friend and teacher does sound like an amazing woman. I'm so sorry that she's having to deal with LE.  The heat from the coverups is probably not helping, but everyone in this forum can relate to why she wants to try to camouflage her LE. I really admire how she's spitting in LE's eye and not letting it keep her from her classes.

  • bhd1
    bhd1 Member Posts: 3,874
    edited September 2013

    What a beautiful article. You are a gift to us!

  • fifthyear
    fifthyear Member Posts: 225
    edited September 2013

    Binney, what a marvelous article. I have sent the link to many friends/family members. Would love for as many people to read it as possible. Much to appreciate.

  • ballet12
    ballet12 Member Posts: 981
    edited September 2013

    Thanks Carol, she's such an inspiration to me.  Whenever I have the usual aches and pains, I think of her and the 14 plus classes that she teaches weekly.  She's just so happy to be alive!

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