Thursday, August 19, 2010

HAVE CHRONIC PAIN?
I know some with Moebius Syndrome suffer from arthritis and other instances of chronic pain--so perhaps this could help you, too:
"Doctors often recommend exercise for patients with fibromyalgia, but the chronic pain and fatigue associated with the condition can make activities like running and swimming difficult. Tai chi -- a slow, meditative martial art -- may be an effective alternative, a new study suggests. Fibromyalgia patients who took tai chi classes twice a week for three months experienced less pain, stiffness, and fatigue than a control group that attended lifestyle education and stretching sessions, according to the study, which was published in the New England Journal of Medicine. Tai chi involves a series of slow, fluid movements that focus on balance and deep breathing. \"

Read the whole thing...

MOEBIUS MOMENT MEMORY:
One of my earliest memories is this:  it's not too long before Christmas.  I was 4 years old.  I loved our Christmas tree and the presents.  Only thing was, I just couldn't wait for Christmas Day to open one of them.  So...early in the morning one day in December, before everyone got up, I opened one of my Christmas presents.  It was some kind of a stuffed animal...a zebra, I think.  But I didn't know I'd done anything wrong.  As my parents came out of their bedroom, I tried to tell them what I'd found.  I remember my dad's confused expression on his face; because, even though I knew what I wanted to tell him, I couldn't speak clearly yet (though I could say some words).

Maybe I remember it because it was one of the first times I consciously was trying to, and wanted to, tell someone something...but was having trouble doing it due to the speech thing.  Always a frustrating thing for people with Moebius.

OTHER PROFOUND THOUGHTS:
Today I want to note David Roche's answer to a question that sometimes vexes us:  why are supposedly "normal" people sometimes (intentionally or not) mean or cruel towards those with Moebius Syndrome or other facial differences?

"I know now that my face does not belong to me; it belongs in a catalogue of symbols.  The face is often (falsely) seen as the locus of the human persona.  When it is scarred, it becomes a reminder that the entire human experience is one of being flawed.  It is not the fact of my disfigurement that wears at my psyche.  It is the fear and self-doubt of others, their very human concern about their own social acceptability, their worry about being unloveable and abandoned, which they project onto me through their words, through random acts of cruelty."--David Roche, THE CHURCH OF 80% SINCERITY.

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