DON'T DO IT OUT OF GUILT

The below is adapted from a recent Washington Post advice column.  I do so because I thought it would be interesting to many of you.  Many of us with Moebius, as adults, tend to be a bit shy and introverted.  That's not surprising; it's not always fun to look "different" and thus to be stared at, etc.  At the same time, many of us know that we can't just stay home all the time; that we don't want to be constant shut-ins; that we need to get out and do something. 

But how to approach this?  Does it mean that we have to constantly do things we hate?  No; and I think the column below provides some useful insight in how to look at this.  Read on:

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I’m 34. I usually prefer to spend my free time with my significant other of nine years. I also have a small core of very close friends, and about twice a month, we have dinner/drinks with these friends. I’m an introvert, so I don’t like large outings or parties, but will attend a few each year.
But that means turning down many event and party invitations. After a couple of these events were canceled due to low interest, I started feeling guilty about saying no, so I’ve been going to more out of obligation. I guess I wanted to communicate to less-close friends and acquaintances that I care about them.
That doesn’t make the events any more bearable or fun. I find myself wondering why I’m doing things I don’t want to do. My thinking is this: People who like to plan and organize group events generally do so because that’s just the way they have fun, right? So, even though I prefer to connect with these people in my life in ways that are less stressful to me, I should continue to suck it up and attend some events to support their preferences, right?
Socially Obligated?
“Should” is such a loaded word.
Meeting friends halfway is the most basic way to keep friends. Since it’s probably safe to assume not everyone would see your first choice (quiet dinner/drinks) as their first choice for socializing, it makes sense that you’d agree to others’ first choice sometimes, even if it drains you.
That said, going out of guilt takes it too far. “I want to show this person I care,” yes; “. . . or else I will beat myself up for not going”? I don’t think your (good) friends would want to be the source of those feelings. Go occasionally to stay in touch and don’t dwell on the issue beyond that.

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What do you think?

MUSING: ENCOUNTERING PREJUDICE...BUT WITH A POSITIVE ENDING

So today I have a story of my own to tell, and I think many of you who read this blog will find it interesting and instructive.  Always remember:  sometimes we encounter the dark side of others.  But it does not have to end badly.

So here is my story.  I am going to, soon, begin teaching a new online class.  To do so, though, I have to take a special online training course, along with others who will be doing similar kinds of teaching.  No problem; I think this new teaching will be interesting and good for me, so I'm certainly willing to do the training (which will last three weeks).

So last week it began.  There are maybe twenty other trainees in the course with me, plus the instructor, who is very visible and an active presence, making announcements, being a presence in our discussion boards, and so forth.  The course is "asynchronous", meaning we do not all have to be online at the same time; instead we can be in the course, do our assignments, do our discussion posts, and so forth when we choose during the week.

Anyway, one of the things we had to do was to do an "ice breaker" discussion board post, in which we introduced ourselves, wrote about our teaching experiences and our interests, talked about what we hoped to get out of the training, wrote about how we would introduce ourselves to our students when we do teach this new course, and so forth.  Plus, we were encouraged to post a picture of ourselves, and embed it in our post.  And all this I did.  As part of the assignment, we all also were supposed to read others' posts, and to reply substantively to at least two others in the class, to write about what we liked in their posts, and to suggest improvements.

Well, as I said, I posted mine, and a bit later I replied to a couple of other posts, and some replied to me, and all seemed to be going well.  But then--suddenly--the next morning, I logged on to the site, and saw there was an e-mail to me from the instructor.  In it, she apologized to me.  Apparently a few hours before, a fellow trainee in the course--I still do not know who--responded to my post in a rather nasty way, apparently making fun of my physical appearance in some way.  In introducing myself, I wrote a bit about the fact that I had Moebius and what it meant; but apparently someone else in the class, when they saw my picture along with my post, could not stop himself from making a negative comment.

But the amazing thing about this was the response to it from my instructor.  As I said, she immediately e-mailed me and apologized for the post.  She took the offensive post down instantly.  And apparently, the trainee who wrote it was immediately removed from the training course.  The instructor then told the entire class that those kinds of posts were not allowed, and that this was to be a place of tolerance, civility, and respect. 

The funny thing is, I never did see the post in question.  I do not know who wrote it or exactly what was said.  But my instructor really stood up for me, and for the values of respect and civility.  She made it clear that tolerance and respect for diversity applied to facial difference, as well as to issues concerning race, ethnicity, sexual orientation, or gender.  And I told her in response that I never even saw the post in question, but I appreciated her response--and not to worry about me; I had faced prejudice before and could handle it.  And so we moved on.

I think she appreciated that I did not let the whole thing throw me off my game.  At the same time, I appreciated that she stuck for me and for these important principles, and that she realized that principles of respect for diversity and tolerance apply to all--definitely including those who have Moebius and similar conditions.

See?  There are some good people out there.  Remember:  people want diversity?  We ARE diversity.

MOEBIUS SYNDROME IN THE NEWS: NEW JERSEY LOVES WILLEM WUEBBEN

This occurred to be exact in Nutley, New Jersey, where the Board of Commissioners there declared a day in honor of young Moebius hero Willem Wuebben, who just recently has been mainstreamed into third grade, has been doing well, and his family worked to raise awareness around Moebius Syndrome Awareness Day.  And it worked!  Read more about young Willem and all he and his family are accomplishing:

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The Nutley Board of Commissioners declares Saturday as Moebius Syndrome Awareness Day, in honor of Lincoln School fourth-grader Willem Wuebben.

The Nutley Board of Commissioners proclaimed Saturday as Moebius Syndrome Awareness Day, in honor of Lincoln School fourth-grader Willem Wuebben, who mainstreamed into the third-grade last year.

"You're my hero today," Revenue and Finance Commissioner Thomas Evans said during Tuesday's meeting. Mayor and Public Safety Commissioner Alphonse Petracco congratulated Wuebben on his "fantastic" accomplishments.

The A student was diagnosed with Moebius Syndrome at the age of 1. Moebius is characterized by facial paralysis and other neurological problems including visual impairments, sensory integration dysfunctions, sleep disorders and weak muscle tones.

Willem read a poem and handed out pencils to the commissioners.

His father Michael said that his son's greatest attribute is compassion. "No matter what he's feeling, he's always worrying about others," he said. 

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Congratulations, Willem!

MOEBIUS SYNDROME IN THE NEWS

Thanks in this case to Moebius Syndrome Awareness Day, the Canadian Broadcasting Network, and my friend the awesome, indomitable Kelsey Ferrill.  Read her story:

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Kelsey Ferrill, a 24-year-old journalism student at SAIT in Calgary, suffers from an extremely rare condition. 

Moebius Syndrome affects only 10,000 people worldwide. It damages the cranial nerves, causing paralysis in the facial muscles. 

As a result of the syndrome, Ferrill has partial paralysis of the face. She has difficulty swallowing and speaking and is often the object of rude remarks and cruel comments. 

"I guess the sad thing is I'm used to it, so it doesn't actually bother me as much as it used to," she said.

Jan. 24 is the annual Moebius Syndrome Awareness day. It is intended to call attention to the disorder.

Ferrill says she hopes the publicity will help people look past the paralysis and see the person who is affected. 

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And even better, watch the video of her story at the link above.  Great stuff!

MOEBIUS SYNDROME IN THE NEWS: ON THE RADIO IN OREGON

And inspired once again by our own Dr. Kathleen Bogart.  Read the story below about Jim Ferretti and his daughter Lili--this originally appeared on KXL radio:

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Portland Ore – I express myself with……   That’s the question being asked by a professor and a group of students at Oregon State University. It’s part of an awareness campaign for Moebius Syndrome.Moebius Syndrome is a rare neurological condition that affects around 20 of every 1,000,000 people born each year.  Many grow up to lead normal lives while in others the syndrome is more sever and leads to other health issues.

Moebius Syndrome primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally.

My daughter Lilli was born with Moebius Syndrome in 2008.  It has been scary and difficult at times knowing that your child is different.  She will never smile like you and me and that is a difficult lesson to learn for a 38 year old let alone a 6 year old.  She’ll come to my wife and I and times, using her fingers to push up the corners of her mouth to say “Look at my smile”.  Heartbreaking to say the least.  We do our best to let her know it’s not what is on the outside that is important. We tell her she has a beautiful smile and we would not change a thing.  I also like to joke with her and tell her that some day she’ll make me a lot of money playing poker.  No one will be able to read her facial expressions!

We had only met one other person with Moebius Syndrome and that was a chance meeting while at Sea World in Florida.  But thanks to Facebook we will always be connected to Gabby and her family. The Internet has helped us talk with other families around the world but it’s really not the same as that one on one meeting.

This past week while looking at the Moebius Syndrome Foundation Facebook page, I noticed a post from Oregon State University talking about a Moebius Awareness campaign.  I emailed Dr. Kathleen Bogart, the director of the Disability and Social Interaction Lab at OSU to learn more about the campaign.

On the front page of the campaign there was a picture of a woman with Moebius.  In my e-mail conversation I asked Dr. Bogart who the woman was and to my surprise she told me it was her.

The excitement I felt jumped through the roof.  I was able to go home that night and tell Lilli that I know she can do anything she want’s including becoming a Doctor!  A little silly I know but there is a huge stigma when it comes with many disabilities.  Having facial paralysis can make social interaction hard because of how accustomed we are to receiving feedback from someone’s facial expressions.  Dr. Bogart tells me this can lead others to inaccurately view people with Moebius as less happy or friendly, when truly they are just expressing themselves in a different way.

Dr. Bogart and her students are working to raise awareness of Moebius by starting a social media ahead of the National Awareness Day.  They’re asking everyone to look beyond face value and take a photo of yourself holding a sign answering the question, “how you express yourself?”

You can use their template, or write your own.  Then post it on the Moebius Syndrome Foundation Facebook Album.  Challenge two of your friends to do the same by tagging them.  Post on Twitter and Instagram with the hashtag #moebiusawareness, or e-mail them to kathleen.bogart@oregonstate.edu to be posted.

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The link to the original story above also contains the original radio program on which this story aired, and an interview with Dr. Bogart.  Moebius Syndrome Awareness Day is powerful stuff.  :)

WRITING YOUR WAY TO HAPPINESS AND HEALTH

Apparently the evidence is there: that writing can help us see ourselves better, can help us identify ways to make ourselves healthier, and can in general make us feel better.  Read on:

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The scientific research on the benefits of so-called expressive writing is surprisingly vast. Studies have shown that writing about oneself and personal experiences can improve mood disorders, help reduce symptoms among cancer patients, improve a person’s health after a heart attack, reduce doctor visits and even boost memory.

Now researchers are studying whether the power of writing — and then rewriting — your personal story can lead to behavioral changes and improve happiness.

The concept is based on the idea that we all have a personal narrative that shapes our view of the world and ourselves. But sometimes our inner voice doesn’t get it completely right. Some researchers believe that by writing and then editing our own stories, we can change our perceptions of ourselves and identify obstacles that stand in the way of better health.

It may sound like self-help nonsense, but research suggests the effects are real.

In one of the earliest studies on personal story editing, researchers gathered 40 college freshman at Duke University who were struggling academically. Not only were they worried about grades, but they questioned whether they were intellectual equals to other students at their school.

The students were divided into intervention groups and control groups. Students in the intervention group were given information showing that it is common for students to struggle in their freshman year. They watched videos of junior and senior college students who talked about how their own grades had improved as they adjusted to college.

The goal was to prompt these students to edit their own narratives about college. Rather than thinking they weren’t cut out for college, they were encouraged to think that they just needed more time to adjust.

The intervention results, published in The Journal of Personality and Social Psychology, were startling. In the short term, the students who had undergone the story-changing intervention got better grades on a sample test. But the long-term results were the most impressive.

Students who had been prompted to change their personal stories improved their grade-point averages and were less likely to drop out over the next year than the students who received no information. In the control group, which had received no advice about grades, 20 percent of the students had dropped out within a year. But in the intervention group, only 1 student — or just 5 percent — dropped out.

In another study, Stanford researchers focused on African-American students who were struggling to adjust to college. Some of the students were asked to create an essay or video talking about college life to be seen by future students. The study found that the students who took part in the writing or video received better grades in the ensuing months than those in a control group.

Another writing study asked married couples to write about a conflict as a neutral observer. Among 120 couples, those who explored their problems through writing showed greater improvement in marital happiness than those who did not write about their problems.

“These writing interventions can really nudge people from a self-defeating way of thinking into a more optimistic cycle that reinforces itself,” said Timothy D. Wilson, a University of Virginia psychology professor and lead author of the Duke study.

Dr. Wilson, whose book “Redirect: Changing the Stories We Live By,” was released in paperback this month, believes that while writing doesn’t solve every problem, it can definitely help people cope. “Writing forces people to reconstrue whatever is troubling them and find new meaning in it,” he said.

Much of the work on expressive writing has been led by James Pennebaker, a psychology professor at the University of Texas. In one of his experiments, college students were asked to write for 15 minutes a day about an important personal issue or superficial topics. Afterward, the students who wrote about personal issues had fewer illnesses and visits to the student health center.

“The idea here is getting people to come to terms with who they are, where they want to go,” said Dr. Pennebaker. “I think of expressive writing as a life course correction.”

At the Johnson & Johnson Human Performance Institute, life coaches ask clients to identify their goals, then to write about why they haven’t achieved those goals.

Once the clients have written their old stories, they are asked to reflect on them and edit the narratives to come up with a new, more honest assessment. While the institute doesn’t have long-term data, the intervention has produced strong anecdotal results.

In one example, a woman named Siri initially wrote in her “old story” that she wanted to improve her fitness, but as the primary breadwinner for her family she had to work long hours and already felt guilty about time spent away from her children.

With prompting, she eventually wrote a new story, based on the same facts but with a more honest assessment of why she doesn’t exercise. “The truth is,” she wrote, “I don’t like to exercise, and I don’t value my health enough. I use work and the kids to excuse my lack of fitness.”

Intrigued by the evidence that supports expressive writing, I decided to try it myself, with the help of Jack Groppel, co-founder of the Human Performance Institute.

Like Siri, I have numerous explanations for why I don’t find time for exercise. But once I started writing down my thoughts, I began to discover that by shifting priorities, I am able to make time for exercise.

“When you get to that confrontation of truth with what matters to you, it creates the greatest opportunity for change,” Dr. Groppel said.

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MOEBIUS SYNDROME IN THE NEWS: THE RESEARCH OF DR. KATHLEEN BOGART

And she is, I should emphasize, our own Dr. Bogart, who has Moebius Syndrome herself, is a member of the board of directors of the Moebius Syndrome Foundation (as am I), and is very active in the wider Moebius online community.  She is also a professor of psychology at Oregon State University, and her research in the area of facial difference and social stigma is making waves.  Here for example is a very recent article from Medical Xpress:

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A little bit of sensitivity training can help people form better first impressions of those with facial paralysis, reducing prejudices against people with a visible but often unrecognizable disability, new research from Oregon State University indicates.

There is a natural tendency to base first impressions on a person's face, but those impressions can be inaccurate and often negative when the person has facial paralysis, said Kathleen Bogart, an assistant professor of psychology in the College of Liberal Arts at Oregon State University.

"We wanted to see what we could do to change that, and we found that education is a powerful tool," said Bogart, who directs the Disability and Social Interaction Lab at OSU. "It takes away the uncertainty of how to accommodate the disability."

The research showed that providing education about conditions that cause facial paralysis helps people correct their misperceptions. Education efforts could be particularly beneficial to health care workers, educators or other groups that are more likely to regularly encounter someone with facial paralysis, Bogart said.

For example, understanding the need to pay attention to other modes of communication could help a doctor develop a better relationship with a patient and more accurately detect when the patient is upset or in pain. It also could help educators avoid the assumption that an unresponsive face means the student is not attentive, and to understand when a child is actually engaged in a task, she said.

Bogart is an expert on ableism, or prejudice about disabilities, and her research focuses on the psychosocial implications of facial movement disorders such as facial paralysis and Parkinson's disease, which affect more than 200,000 Americans. Her interest stems from personal experience; she has Moebius syndrome, a rare congenital neurological disorder characterized by facial paralysis and impaired lateral eye movement.

For the study, she conducted an experiment where some participants received sensitivity training in the form of educational information about facial paralysis, including the cause and nature of the disability. The information stressed the need to focus on body language and voice cues of people with facial paralysis. Other participants received no information on facial paralysis.

All 110 study participants were then asked to watch a series of video clips featuring people with facial paralysis, both mild and severe, and were asked to rate the sociability of the people in the videos. The people who read the educational information consistently rated people with facial paralysis as more sociable than those in the group that did not read the information.

"We found that awareness and education efforts are effective in reducing stigma related to rare disabilities such as facial paralysis," Bogart said. "That could have a broad impact on the rare disease community, because many rare diseases are unrecognizable. People who encounter someone with a rare disease may not understand or know how to adapt to communicate with them."

The findings are being published in the February issue of the journal "Patient Education and Counseling." Co-author is Linda Tickle-Degnen of Tufts University. The research was supported by a grant from the National Institutes of Health.

Bogart is now developing educational materials about Moebius syndrome targeted to educators and health care providers. She and the students in her lab also are conducting an awareness campaign in conjunction with Moebius Syndrome Awareness Day, which is held annually on Jan. 24.

The awareness campaign is a pilot project. Bogart and her students are encouraging people to take a self-portrait with a sign describing how they express themselves, then sharing the photos on social media sites using the hashtag #moebiusawareness. The Moebius Syndrome Foundation and several other college campuses are also participating in the campaign. For more information on the effort, visit:http://bit.ly/17BMR8o.

In the future, Bogart hopes to study the effectiveness of such educational efforts to determine if more information should be included, if other types of groups might be targeted or if there are other ways to enhance understanding of rare diseases such as facial paralysis.

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