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  • maria1
    Having ms is a chore
    Sometimes knowing that others have ms makes others feel better
    Sometimes knowing that others have ms makes others feel worse

    When I read that others feel better when they hear that someone is suffering or coping with the same symptoms a confusion arises

    Are they feeling better because someone else is suffering
    Are they feeling better because it is a symptom of ms and not something else
    Are they feeling better because someone else knows what they are going through
    Is it all of the above

    Is it ms or is is something else
    Sounds like this, sounds like that, sounds like everything else

    Treat it with this , treat it with that
    then treat the reaction to the treatment

    What works, what does not work
    what to do, what not to do
    maybe the same
    for me and for you
    and then again
    maybe not

    If i were the only one
    how would I feel
    to be unique, to be alone

    I will never know
    But I do remember way back when
    it was all new and strange
    the confusion, the fear, the difficulty
    and what made it better
    was the ability to share
    with those who knew
    what I was going through
    and somewhere, somehow
    they made it better, no not better
    but better to cope with
    because
    they understood, they shared, they care
    and because
    I was not the only one
    and I did not have to do it alone
    I did not have to be afraid alone
    i would not have to live alone

    And the support for the struggle
    was big and genuine
    and the information abundant
    I could read forever
    what it was like
    because I was not
    The Only One.

    So for all who have been there
    And for all who have done all the work
    And for all who are there
    We are not
    The Only One
    And for that
    A job well done
    because it is no fun
    to be
    The Only One.
  • pop
    Maria - I have been part of this website for only a short period of time, but I have read many of your posts - you are just unbelievable articulate and have a fantastic command of the english language - I can only assume that at some point in your life you were a writer - or you should have been.  You have a true God given gift for words!
  • maria1

    WOW!
    Only in my dreams.
    I am pleased that you enjoy my amusements.
    I do not travel and have to find ways to amuse myself.
    Only the past two years has the brain been functioning.
    Maybe it is because everything else is waning.

    Something in the head connected.
    Maybe it was all the practice with rhyming,
    beginning with
    roses are red....
    And Gracie Allen.
    Do you know who Gracie Allen was>
    married to George Burns.
    She made me laugh so much because she would connect words in a conversation and direct it a hundred eighty degrees from the gist of the conversation.
    She is my hero.

    I am learning how to accept compliments.
    I am so happy you like the way I say things.
    I was embarassed when hlessey paid me a compliiment, and reacted tersely.
    It was an alien experience.

    I have spent years trying to find the words to explain to the doctors exactly what I am feeling. In my mind, all alone, I look for words, like hunting for buried treasure. Because of the need to  conserve finances I decided to spend my time trying to describe things. Like looking out the window and describing what I see. So I can create adventures for myself. We have no neighbors to speak of, and very few distractions.

    And I want to be a story teller.
    So all I need is a little encouragement.

    And I am trying to make this site a little less dramatic. To relieve some of the pressure on all of us. And to make something pretty. Pretty things make me happy, and I hope it makes others happy too. "The best revenge is to live well"

     

  • Chris-support-for-people-living-with-ms
    Beautiful Maria. You really captured how scary it is when a huge change like ms comes along, all of the rush of emotions, and the resolve that people have to find in times of much chaos, most of all how lonely it can feel when dealing with a change such as ms. I really like how you explained this in poetic form. You are not alone, many are with you.