We MS bloggers
though quite vocal comprise a
small minority.
If ten thousand blog,
we're only .4%
of world MSers.
In our special role,
should we be spokespersons for
the ones with no voice?
though quite vocal comprise a
small minority.
If ten thousand blog,
we're only .4%
of world MSers.
In our special role,
should we be spokespersons for
the ones with no voice?
10 comments:
No.
I believe we are. We are the archivists of the state of the art in 2011. When a disease is incurable, and has such emotional, spiritual, physical impact,we must help others navigate by showing them what we have learned. We are the textbooks. I love this post! Have a great day. Your posts always resonate w/me. mary
Excellent post, Judy! Indeed, when Jennifer and I present and share our stories, write for our blog, work to increase awareness, advocate at the state capital, we never feel we're doing it solely for ourselves. It's always a sense we're speaking and writing for those MSers who are uncomfortable, unavailable or unable to do the same for themselves. Dan
Hi - and "yes"...we are the voice of ourselves and others who, for whatever reason, are silent.
Love Gail
peace.....
Very thought provoking! When I post I post to speak to people with MS about my personal experience as well as the experience of others who have shared their stories with me. I am not sure I would be comfortable speaking for as I have found every experience to be unique.
susan@msathlete.org
To me, you will always be a great spokesperson - blogging takes us accros borders and oceans and unite us. Not all dares to venture out into the blogging world, on stages holding a lecture etc. so every helping hand (spokespersons) are needed.
I think sharing information is important, as is sharing thoughts, emotions, accomplishments and failures. But I think being a spokesperson for this disease is difficult as it affects many so differently.
Our gift to the community is not "to speak for them..."
It's to give them the courage to speak for themselves.
Each of us has a different expression of the disease, and a different experience of the disease. The details vary infinitely, because we vary infinitely.
And yet, our experience is the same. Confusion, and clarity; loss, and discovery (often of things we didn't remember that we had, all along); bidding farewell to things that were dearly beloved, and opening our arms to greet something new and wonderful.
It's the human condition; no more, no less. Just writ so large that we can't ignore it comfortably, like we'd practiced so diligently before we encountered The Disease. And so, as humans... we do speak for each other, as we speak to each other. And disease or not, we always have; and we always will.
Donna, Mary, Dan, Gail, Susan, Anne, Karen, and Robert,
The number of comments for this poem has been a shock. This poem obviously spoke to many. I appreciate all your comments. The range of responses is also startling. Some upheld the value of acting as spokespersons. Some called for a more nuanced role. And one categorically said, no.
My feeling about this question is that each person has unique talents and capabilities. Some revel and perform well in the role of being inspirational speaker, spokesperson, archivist, etc. Others prefer a more quiet sharing.
Me, I never set out to be a spokesperson and, indeed, would find myself uncomfortable in that role. I simply report the range of my MS experience and that of others I know. What I do feel strongly about is that I engage the full picture: the highs and the lows. Anything short of that would feel dishonest. If the result is that I end up being inspirational, okay.
I also acknowledge that we bloggers are a very small percentage of those living with this disease. I wonder about the silent voices. What are they feeling? Where do they find joy? Can they find joy? Why are they not joining us? Are they at least reading us and, hopefully, being helped in some way?
Whether spokespersons or not, we are clearly members of community who have found each other, giving us an opportunity to ameliorate the MS experience. And for that I am profoundly grateful.
Judy
I think we are. I am always aware of this as I write. I remain true to myself, but respectful of others. At least that is my intention!
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