Thursday, September 23, 2010

STARING DOWN THE STARING ISSUE
Dear Abby's column today has words that will interest those with Moebius Syndrome or those with other kinds of physical and facial issues--words, that is, from readers, which originally arose from someone writing in complaining that her special-needs child received unwanted stares in public.  Read on:
"My daughter, "Kate," is also stared at in public. I, too, used to bristle at the unwanted attention, until I began to open up and talk with people. I found most of them to be compassionate and merely curious. Sometimes seeing Kate triggered their memory of a loved one who was affected by a similar challenge.  As often as I can, I take the time to do mini "public service announcements" and chat with folks who linger, look or approach. It's a great way to build a bridge between disabled individuals, who have much to teach, and the non-disabled, who have much to learn.  Kate is 16 now, beautiful inside and out. Please tell "Boiling Mad" that time heals some of the rawness of a fresh diagnosis, and if she'll try to find the best in others, she'll usually be right."....[and another reader said this:]"I'm one of those folks who "stare" at others. By no means is there ever a bad intent. I'm a people-watcher. I love watching people communicate in different ways, like signing. Whether someone is in a wheelchair or has a visible disability, I value each and every person. Maybe "Boiling Mad" doesn't understand that many of us are willing to reach out, lend a hand or just be friendly."

So those are some different perspectives, along with some wise words to keep in mind.  Though I must say that, at the same time, some staring can be...and is...hostile.  Certainly not all staring is meant to be so.  But sometimes it is, and usually those of us with Moebius or other differences are pretty good at sensing it.  Don't automatically assume everyone's out to get you.  But if you get a strong negative feel from someone else's staring or other actions, don't automatically doubt yourself, either.  Go with your gut.

IT SHOWS ON YOUR FACE--REALLY, IT DOES
As of course everyone with Moebius Syndrome knows, some things don't "show" very well on our faces--smiles, frowns, the like.  But there are some things that WILL show, even on us.  I remember when I was in college, for example, and I had tough semesters with really hard final exams.  During finals week, it seemed like I'd more often than not get a bit of an acne breakout on my face.  I thought it was just due to lack of sleep.  Not so, as Judith Newman of msnbc.com notes today:
"I’ve been engaged several times, and each time my skin realized the marriage was a bad idea before I did. I know this because, when it came time to plan the wedding, I would break out in hives. Red splotches the size of half-dollars all over my arms, chest, and stomach. Attractive! The man I eventually married is impossible; still, I knew he was The One when contemplating a life with him did not necessitate massive doses of Benadryl.  I am hardly alone in having skin that reacts, sometimes dramatically, to significant life events. It happens to most of us: At certain points in our lives, stress, hormones, lifestyle, or all three can play a role in how the skin looks and behaves. “No question: Many life changes are manifested through the skin,” says Ranella Hirsch, assistant clinical professor of dermatology at the Boston University School of Medicine.
Sometimes the big life event — a new job, marriage, graduation, pregnancy, and so forth — exacerbates a preexisting genetic condition: You can’t get psoriasis from throwing a gargantuan wedding, but if you’re prone to it, this is when it may flare up. Other times, says Hirsch, the milestone causes new problems to arise. What you can do is be prepared to deal with whatever your skin — and life — throws your way."

"A little knowledge that acts is worth infinitely more than much
knowledge that is idle." -Kahlil Gibran





 

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