“Some” Voices of Multiple Sclerosis

I read  a recent  edition of the New York Times blog column Well entitled Voices of Multiple Sclerosis.  My husband is my editor. He is the one who steers me past the articles that he know will torment me for days and to the ones that will intrigue and inspire. It’s easier now that we have made the “green” transition to e-reading. Instead of piles of folded papers cluttering our flat surfaces, emails accumulate in our virtual mailboxes with encouraging subjects such as “Keith thought you would be interested in this…”    Such was the case for Voices of MS. And while it sat in my “in” box for a bit, eventually I did read and in this case listen.
I was moved to write a letter to the columnist Tara Parker-Pope though I have yet to send it. So, I thought I would post it here and get some feedback from my readers.. especially those of you who have MS. (but not to out rule those who don’t!)
Ms. Parker-Pope,
Thank you for giving voice to some of the diverse individuals who live with Multiple Sclerosis. Watching and listening to their experiences brings out many reactions; personally and professionally.
As a person who has been living with MS for over two decades I connect with each of these stories, with an understanding that ranges from “I know what you mean” to “will this be me?”The latter of which is the approach/avoidance that I experience with everything I read or see about MS. I have met many people with MS over these 20+ years that echo this sentiment.
It’s hard to satisfy such a varied group of people. Any media outreach is obligated to represent. If the sampling doesn’t provide a person from each “walk” of life then someone is alienated. In doing so however, many people with MS who are fearful of their uncertain future are not interested in reading more. Though some want to know every possible outcome so that they can plan for what might happen, many don’t want to waste valuable energy worrying about something that may never occur. It’s counter productive on so many levels most significantly, managing each day do be the strongest one can be within their individual circumstances – emotionally and physically.
It is this reality that inspired me to become an educator that uses technology to create ideal learning environments for individuals who live with such an uncertain future. I have designed a web-learning approach that allows each person to customize what s/he wants to learn and how s/he wants to learn it.  Called MSSoftServe.com, it uses techniques supported by learning theory and preferences that can be set to reach each unique individual with MS.
This educational tool serves up information as the users want to absorb it – based on their own symptoms and concerns – without exposing them to information they are not looking for that replaces their desire to learn with fear and uncertainty. Or if your approach is more “rocky road” (“I want to know those worst case scenarios”), you can specify accordingly. Whatever the situation, this new way to learn about health on the web is self-directed and ultimately empowering.
(MS SoftServe is a non-profit organization currently seeking grants to fund its development…blah blah blah.)
I just left off there. I’ll obviously revisit this before I send it to her. Maybe a more refined ending! 🙂
In the mean time… I welcome your thoughts.
~ag

2 thoughts on ““Some” Voices of Multiple Sclerosis

  1. Lisa Emrich says:

    Amy,

    This is an excellent opportunity to address the issue of representing and educating such a varied group of individuals who happen to have the same two words some where in their diagnosis – multiple sclerosis.

    In reading Ms. Parker-Pope’s pieces, it seems like she is simply fed the stories and presents them. That’s harsh of me to say, I suppose. It might be interesting to send letters to the Health Editor at NYT in addition to another main editor as well. Perhaps write your piece in the style of a Op-Ed.

    Or……..compose a really tight piece which strongly encourages a desire to learn more about MSSoftServe or discuss your approach in educating folks with a complex chronic illness. Perhaps even start with the fact that you are the founder/president/director/whatever function you serve of the Non-Profit (501….) MSSoftServe which provides………. Share your reaction to the story and how it relates to your work (and your 20+ year history with MS). Express appreciation for putting more of a face and “voice” to the illusive disease which is MS. Maybe mention NMSS project – Faces of MS (another non-profit connection). Offer to be available to discuss more. Do mention that MSSoftServe is currently in the process of seeking full funding (or something to that effect).

    Basically, present something which unconsciously “begs” more investigation, discussion, and exposure. Not beg as in desperate, but beg as in “of course you need to know more.”

    That’s what comes to mind initially. Hope that helps spur some more thoughts on your part and helps to strengthen your message. 🙂 I hope that you’re doing well Amy. Hey, I wrote something over at Health Central which would probably make you smile.

    Lisa

  2. Merely Me says:

    I think this is a wonderful piece…you should definitely go for it!

    I do apologize for not visiting more often…just life stuff I guess.

    You are an inspiration and my wish for you this new year is that you will realize your dreams. May you have a wonderful holiday filled with magic and hope.

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