MS Awareness Month: MS and The Myth of Disability

Cathy Health Guide March 14, 2012
  • About a month ago I was on the telephone speaking with a friend.  After I hung up I felt a strange pit in my stomach. I couldn’t figure out why I felt this way.  I tried to replay our conversation over and over again in my mind, sort of pressing the rewind button of a tape recorder in...

6 Comments
  • Amy Gurowitz
    Health Guide
    Mar. 14, 2012

    Thanks for this thought provoking essay Cathy. I've always been a card carrying feminist (as has my husband! - and deal-maker for marriage in my mind!) It seems like an endless plight and though I've lowered my octane in recent years, I continue to appreciate how difficult it is to help people see what is obvious to me and other like-minded people. (The images...

    RHMLucky777

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    Thanks for this thought provoking essay Cathy. I've always been a card carrying feminist (as has my husband! - and deal-maker for marriage in my mind!) It seems like an endless plight and though I've lowered my octane in recent years, I continue to appreciate how difficult it is to help people see what is obvious to me and other like-minded people. (The images of women in the media and entertainment alone are enough to make me run screaming in to the street... especially as I raise my daugther.)

     

    When I went on disability- I felt some strange pangs that I didn't expect. Yes, it's hard to lose the identity that comes with working a full-time job outside the house. In our world that is defining for so many. (and makes for easy conversation in social settings) It felt funny to me to be a perceived part of this stay-at-home group of people- in spite of the fact that it changed my life for the better in many ways. (one of which was spending more time with my daughter and less time communiting to the city-getting home-passing out) Even though the job I was working was never a goal, nor did I intend to work there beyond the time when I could put all of my limited energy to MS SoftServe.  But still... I commuted to NYU, worked 9-5, got my master's degree AND I have a child. As much as that was taxing my every fiber I was addicted to hearing "Wow... how do you manage that AND MS."

     

    It took me a bit to get used to the idea, the indentity sans work... but once I did the emotional reward was huge. (of course the physical was evident immediately as well.)   

     

    Before I stopped working, I started using a walking stick and went public with my MS and although self-conscious, I loved telling people that I have been dealing with this, unbeknownst to them since 1988. Teaching the people around me was an important part of my life mission in education. And while I tried to use that to soothe the part of me that cringed at my new image, I wasn't always successful. Although I'm more comfortable leaving the house with my MS branding for anyone to see, it makes me a bit self conscious everytime. It's hard not to feel the eyes of those who are observing this young (i like to think of myself as young... but don't ask my daughter about that!) hobbling in to a store or needing to sit down next to those who one might expect to see with such needs.

     

    I suppose it's a life in progress- and the more we can do to break those stereotypes the better. We will make the world around those of us who are living with MS a little easier if we help more people understand us, and not make assumptions. I rise to that task as often as my mood will allow. I hope other MS peeps are doing the same during my emotional "days off." The movement always starts from within... and we have a strong group with which we can take to the streets. With cane, stick, crutch, wheels and a stellar attitude towards making change. 

     

    Your references to the Suffragist movement and living with a different-ability send me back to Netflix to watch Downton Abbey for the third time. Was that unintentional? Or did that juxtaposition occur to you when you wrote?

     

    Thanks Cathy for getting me to think. (if not to type excessively!) I thought this would be a brief comment. Silly me!

    ~Amy G.

    • Cathy
      Health Guide
      Mar. 14, 2012

      Amy,

       

      I don't need an excuse to watch Downton Abbey - I am fully and totally enamored/addicted to that series.  I believe that the daughters in that series were trying to "buck" the ways of their world by marrying for love and not rolling over to marry someone simply for money or family honor.  The best example is the youngest daughter marrying...

      RHMLucky777

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      Amy,

       

      I don't need an excuse to watch Downton Abbey - I am fully and totally enamored/addicted to that series.  I believe that the daughters in that series were trying to "buck" the ways of their world by marrying for love and not rolling over to marry someone simply for money or family honor.  The best example is the youngest daughter marrying the chauffeur!

       

      As far as your story, you reminded me that how I feel now about my MS evolved over many years; it did not happen all at once.  Admitting we are not who we used to be (physically) is difficult.  Being part of the stay-at-homes when we also want to work takes some getting used to (However, I loved time at home with my newborn son; I adored spending quality time with him and will never, ever regret that.  Ultimately, this is a choice women are now able to make - as opposed to a choice that was made for us in years gone by.  We all make the choice that is best for us - thanks again to the feminists...). 

       

      Yes, we all have our good days and bad, Amy.  However, on most days you speak for all of us through MSSoftServe plus your constant advocacy.  For you, I see mostly "up" days!  I wholeheartedly applaud you, my friend.

    • Amy Gurowitz
      Health Guide
      Mar. 14, 2012

      Thanks Cathy! Now you have made my day!

      :)

  • Kasey Minnis
    Mar. 14, 2012

    Thanks, Cathy, for raising MS awareness with a terrific article. The Multiple Sclerosis Foundation's theme for this National MS Education and Awareness Month is "At Your Best with MS" and this really ties in beautifully. No matter what a person's level of ability, no matter what challenges they face, the important thing is to be at their best with the gifts...

    RHMLucky777

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    Thanks, Cathy, for raising MS awareness with a terrific article. The Multiple Sclerosis Foundation's theme for this National MS Education and Awareness Month is "At Your Best with MS" and this really ties in beautifully. No matter what a person's level of ability, no matter what challenges they face, the important thing is to be at their best with the gifts and abilities they have. Everyone CAN contribute.

  • Kasey Minnis
    Mar. 14, 2012

    Thanks, Cathy, for raising MS awareness with a terrific article. The Multiple Sclerosis Foundation's theme for this National MS Education and Awareness Month is "At Your Best with MS" and this really ties in beautifully. No matter what a person's level of ability, no matter what challenges they face, the important thing is to be at their best with the gifts...

    RHMLucky777

    Read More

    Thanks, Cathy, for raising MS awareness with a terrific article. The Multiple Sclerosis Foundation's theme for this National MS Education and Awareness Month is "At Your Best with MS" and this really ties in beautifully. No matter what a person's level of ability, no matter what challenges they face, the important thing is to be at their best with the gifts and abilities they have. Everyone CAN contribute.

    • Cathy
      Health Guide
      Mar. 14, 2012

      Thanks, Kasey!  You have hit the nail on the head - to focus on our abilities, always.  That will lead to a better and more fruitful life for each one of us.  Kudos for your answer....