UPDATES ON HEALTH MYTHS:
I found out some things I didn't know before here--for example: is it true that you need to wait an hour to go swimming after you eat?
"The truth is: Splash away. "After you eat, more blood flows to the digestive system and away from the muscles," says Cohen. "The thinking was that if you exercised strenuously right after eating, that lack of blood would cause you to cramp up and drown." But that won't happen. Sears concurs: "You might have less energy to swim vigorously, but it shouldn't inhibit your ability to tread water or play."
MOEBIUS SYNDROME IN THE NEWS:
More heroes with Moebius Syndrome appear today--this time from across the pond in the UK, we meet the young Jack Marshall:
"A DISABLED boy from Doncaster is determined to overcome his handicap to raise thousands of pounds for charity by completing his seventh road race. Twelve-year-old Jack Marshall has Moebius Syndrome, a rare condition which has left him blind in one eye and with reduced hearing. His condition drastically affects his co-ordination and balance. Despite this, Jack is taking part in the Bupa Junior Great Yorkshire Run in Sheffield on Sunday, in aid of the Yorkshire Young Achievers charity, after winning the prestigious Youngster of the Year award in 2007."
Note also what this brave boy's mother has to day:
"Jack's mum Linda Marshall, who lives in Belton, says she is proud of her son. She said: "Jack is a true inspiration. As far as he's concerned he doesn't have a disability and so has this determination to keep going, all in aid of charity. "All he wants to do is to help other children who he considers are less fortunate than himself. "This is the seventh road race that Jack has run and he wants to keep going next year after a rest during the winter. "All the family are going to have a big party in September to celebrate Jack's amazing achievements." Over the years, Jack has raised in the region of £10,000 for several charities including the Yorkshire Young Achievers Foundation, Cash for Kids and MOVE, of which he is a junior ambassador."
That is one outstanding young man...
"In the Church of 80% Sincerity, we understand that the basic motivating factor for all human beings is not self-preservation or sex or love. It is the desire to not be embarrassed. Psychologists tell us that the number one fear of all Americans is the fear of public speaking. The fear of death is number six...Behind the fear of embarrassment if that deeper fear, of saying what you really think and feel and telling your story, because that is when you may be exposed as stupid, inarticulate, selfish or anything else that you would rather leave undiscovered."--David Roche, THE CHURCH OF 80% SINCERITY.
Tuesday, August 31, 2010
Monday, August 30, 2010
FEELING SOME PAIN?
If you are, and I know some with Moebius suffer, for various reasons, from chronic pain--well, here's a novel way to deal with it:
"People with chronic pain who aren't getting enough relief from medications may be able to ease their pain by smoking small amounts of marijuana, a new study suggests. Marijuana also helps pain patients fall asleep more easily and sleep more soundly, according to the report, one of the first real-world studies to look at the medicinal use of smoked marijuana. Most previous research has used extracts of tetrahydrocannabinol (THC), the active ingredient in the cannabis plant."
It's a solution obviously that wouldn't appeal to everyone, and wouldn't necessarily be right for everyone (especially for someone with Moebius Syndrome--smoking anything isn't exactly the easiest thing for us to do!). Still, speaking for myself, if someone chose this method of controlling their pain, I'd have no problem with it.
MOEBIUS SYNDROME IN THE NEWS:
From New Jersey:
"Born 10 weeks premature at Cooper University Hospital in Camden, Christa Chant weighed 2 pounds and could fit into the palm of her father's hand. Two days later, she was diagnosed with an intraventricular hemorrhage -- a bleeding into the brain's ventricular system -- and nearly stopped breathing. "Three times they told us she wasn't going to survive," recalls Christa's father, Ted. "And if she did, she would never walk or talk. "Sixteen years later, Christa is scheduled to join 12 teammates from Challenger Ball of Cherry Hill for an 11 a.m. exhibition baseball game Saturday, a day before the Little League World Series championship in Williamsport, Pa. Highlights of the Challenger game are expected to be aired during ABC's Saturday telecast of the Little League World Series....Challenger was established in 1989 as a separate division of Little League for boys and girls 5 to 18 with physical and mental disabilities. The division now has more than 30,000 children participating in more than 900 programs worldwide. The Cherry Hill program was formed in 2007 by Steve Silverman, a longtime Little League coach whose daughter, Isabel, passed away in 2005 at the age of 6. Isabel suffered from Moebius syndrome, a rare neuromuscular disorder characterized by lifetime facial paralysis. The free Cherry Hill program has grown from 97 players in its startup season to more than 150, spawning similar programs inStratford
, Medford, Pitman, Vineland and Gloucester County."
Congratulations to Mr. Silverman, and indeed his daughter is remembered. This shows how grass-roots efforts can pay off.
Meanwhile, here's another story about a high-achieving person with Moebius Syndrome--from New Zealand:
"Otumoetai Swimming Club's Tayla Clement has secured a New Zealand paralympic record of 1.13.70 in the 100m individual medley at the Bay of Plenty winter swimming championships. Clement's hard work has paid off under the guidance of coach Stefan Swanepoel. "Tayla does not receive any special treatment because of her condition - she has put in the effort and this is her reward." Clement has a rare condition known as Moebius syndrome, a congenital neurological disorder. She is part of the Xcellerate to Xcellence programme within Swimming Paralympics New Zealand Well known swimming coach Clive Power is one of Clement's coaches within Swimming Paralympics NZ."
Congratulations to Tayla Clement! Great stories in the news today concerning Moebius Syndrome, grass-roots work paying off, and individual achievement. Hard work really can pay off...
If you are, and I know some with Moebius suffer, for various reasons, from chronic pain--well, here's a novel way to deal with it:
"People with chronic pain who aren't getting enough relief from medications may be able to ease their pain by smoking small amounts of marijuana, a new study suggests. Marijuana also helps pain patients fall asleep more easily and sleep more soundly, according to the report, one of the first real-world studies to look at the medicinal use of smoked marijuana. Most previous research has used extracts of tetrahydrocannabinol (THC), the active ingredient in the cannabis plant."
It's a solution obviously that wouldn't appeal to everyone, and wouldn't necessarily be right for everyone (especially for someone with Moebius Syndrome--smoking anything isn't exactly the easiest thing for us to do!). Still, speaking for myself, if someone chose this method of controlling their pain, I'd have no problem with it.
MOEBIUS SYNDROME IN THE NEWS:
From New Jersey:
"Born 10 weeks premature at Cooper University Hospital in Camden, Christa Chant weighed 2 pounds and could fit into the palm of her father's hand. Two days later, she was diagnosed with an intraventricular hemorrhage -- a bleeding into the brain's ventricular system -- and nearly stopped breathing. "Three times they told us she wasn't going to survive," recalls Christa's father, Ted. "And if she did, she would never walk or talk. "Sixteen years later, Christa is scheduled to join 12 teammates from Challenger Ball of Cherry Hill for an 11 a.m. exhibition baseball game Saturday, a day before the Little League World Series championship in Williamsport, Pa. Highlights of the Challenger game are expected to be aired during ABC's Saturday telecast of the Little League World Series....Challenger was established in 1989 as a separate division of Little League for boys and girls 5 to 18 with physical and mental disabilities. The division now has more than 30,000 children participating in more than 900 programs worldwide. The Cherry Hill program was formed in 2007 by Steve Silverman, a longtime Little League coach whose daughter, Isabel, passed away in 2005 at the age of 6. Isabel suffered from Moebius syndrome, a rare neuromuscular disorder characterized by lifetime facial paralysis. The free Cherry Hill program has grown from 97 players in its startup season to more than 150, spawning similar programs in
Congratulations to Mr. Silverman, and indeed his daughter is remembered. This shows how grass-roots efforts can pay off.
Meanwhile, here's another story about a high-achieving person with Moebius Syndrome--from New Zealand:
"Otumoetai Swimming Club's Tayla Clement has secured a New Zealand paralympic record of 1.13.70 in the 100m individual medley at the Bay of Plenty winter swimming championships. Clement's hard work has paid off under the guidance of coach Stefan Swanepoel. "Tayla does not receive any special treatment because of her condition - she has put in the effort and this is her reward." Clement has a rare condition known as Moebius syndrome, a congenital neurological disorder. She is part of the Xcellerate to Xcellence programme within Swimming Paralympics New Zealand Well known swimming coach Clive Power is one of Clement's coaches within Swimming Paralympics NZ."
Congratulations to Tayla Clement! Great stories in the news today concerning Moebius Syndrome, grass-roots work paying off, and individual achievement. Hard work really can pay off...
Friday, August 27, 2010
WE ARE THE FACE OF DIVERSITY:
You know, one point I've been wanting to make to the world for a while now is this one...and I want to explain it very carefully. Maybe I'll write it as a letter to the world. That might work. Here goes:
Dear World:
So, so many of your inhabitants out there talk a lot about "diversity." They say that diversity is good and important. They say that it helps us learn more, that it makes us more educated. They argue that knowing about other peoples, other cultures, and other points of view is good for us. That it adds to our knowledge and to our understanding.
And you know what? In many ways, many of the world's peeps are very much right about this. It is important that we know as much as we can about our world and all the people in it.
But there is one thing that troubles me, world. So often when your inhabitants speak of diversity, they just mean racial diversity and/or ethnic diversity. They are discussing people of different skin colors and of different races and belonging to different ethnicities. And yes, that is part of diversity. But that is not all of it.
For we--we people with Moebius Syndrome, we people with a facial and/or physical difference--we are part of "diversity", too. You want diversity? We go through experiences that are very unique to us, from having to endure hostile stars to curious stares, from having to overcome physical difficulties that stand in our way to overcoming prejudice and discrimination--people assuming we are retarded or mentally handicapped when, of course, we're not. We are different, too. We are part of American and world "diversity", too. Yet I have this feeling that many in America and the world, when they think of diversity, don't think of persons like us.
They should. That needs to change. And actually we with Moebius, we with a facial difference, we can be a small part of that change. You parents of children with Moebius Syndrome, tell your children's teachers: "Listen, you want to teach about diversity? You should. And my child is one example of it." You people with Moebius Syndrome or with a facial difference who go out looking for a job, if it's a firm or an entity that touts its diversity, then tell the person interviewing you: "I would add greatly to the talent and to the diversity of your staff."
Let's make it clear: "diversity" does have something to do--of course!--with racial and ethnic diversity. But it's not only about that. It's also about people like us. And we have a lot to offer you, world...
You know, one point I've been wanting to make to the world for a while now is this one...and I want to explain it very carefully. Maybe I'll write it as a letter to the world. That might work. Here goes:
Dear World:
So, so many of your inhabitants out there talk a lot about "diversity." They say that diversity is good and important. They say that it helps us learn more, that it makes us more educated. They argue that knowing about other peoples, other cultures, and other points of view is good for us. That it adds to our knowledge and to our understanding.
And you know what? In many ways, many of the world's peeps are very much right about this. It is important that we know as much as we can about our world and all the people in it.
But there is one thing that troubles me, world. So often when your inhabitants speak of diversity, they just mean racial diversity and/or ethnic diversity. They are discussing people of different skin colors and of different races and belonging to different ethnicities. And yes, that is part of diversity. But that is not all of it.
For we--we people with Moebius Syndrome, we people with a facial and/or physical difference--we are part of "diversity", too. You want diversity? We go through experiences that are very unique to us, from having to endure hostile stars to curious stares, from having to overcome physical difficulties that stand in our way to overcoming prejudice and discrimination--people assuming we are retarded or mentally handicapped when, of course, we're not. We are different, too. We are part of American and world "diversity", too. Yet I have this feeling that many in America and the world, when they think of diversity, don't think of persons like us.
They should. That needs to change. And actually we with Moebius, we with a facial difference, we can be a small part of that change. You parents of children with Moebius Syndrome, tell your children's teachers: "Listen, you want to teach about diversity? You should. And my child is one example of it." You people with Moebius Syndrome or with a facial difference who go out looking for a job, if it's a firm or an entity that touts its diversity, then tell the person interviewing you: "I would add greatly to the talent and to the diversity of your staff."
Let's make it clear: "diversity" does have something to do--of course!--with racial and ethnic diversity. But it's not only about that. It's also about people like us. And we have a lot to offer you, world...
Thursday, August 26, 2010
NEED TO LOSE WEIGHT?
Again, students show that drinking water can help:
"Could something as simple as a glass of water be the key to the nation's obesity epidemic? Well, probably not. But a new study has found that drinking a couple of glasses of water before meals can help people consume fewer calories."
TODAY'S THOUGHT, SURE TO BE LONG AND KIND OF RAMBLING:
In another forum, the question came up: are persons with Moebius Syndrome "disabled"? Is that the correct way to describe them?
In thinking about it, and in listening to what others had to say, it appears many would initially say "no"--that they certainly don't FEEL disabled. But of course it's not that simple. Moebius Syndrome varies greatly in how it affects those who have it. Some cases are mild. Others are far more severe. Some are missing limbs or parts of limbs. Some have hearing loss. Others have impaired vision. Certaiinly in those cases, then, when your physical condition impairs what you can do, of course it's fair to consider oneself disabled, and--further--to fight for and assert your rights as a disabled American. You deserve equal accommodations and equal access. The law says so, and those who have fought for those rights and who, despite their disabilities, have achieved great success deserve to be hailed as heroes.
At the same time, I don't feel disabled. And in looking at myself, I don't believe my Moebius Syndrome truly PREVENTS me from doing much of anything. Given that, I wouldn't feel right, I wouldn't feel honest, in claiming to be dishonest when I truly don't believe I am. Others with Moebius Syndrome of course are affected differently. And that's fine. But I don't think it would be a good idea to suggest that ALL who have Moebius Syndrome are disabled. Not because it's wrong or bad to be disabled. But because it wouldn't be true. And I want the focus on equal accommodations and equal rights and equal access to be there for those who truly need it and deserve it; and not on those who perhaps don't.
Again, students show that drinking water can help:
"Could something as simple as a glass of water be the key to the nation's obesity epidemic? Well, probably not. But a new study has found that drinking a couple of glasses of water before meals can help people consume fewer calories."
TODAY'S THOUGHT, SURE TO BE LONG AND KIND OF RAMBLING:
In another forum, the question came up: are persons with Moebius Syndrome "disabled"? Is that the correct way to describe them?
In thinking about it, and in listening to what others had to say, it appears many would initially say "no"--that they certainly don't FEEL disabled. But of course it's not that simple. Moebius Syndrome varies greatly in how it affects those who have it. Some cases are mild. Others are far more severe. Some are missing limbs or parts of limbs. Some have hearing loss. Others have impaired vision. Certaiinly in those cases, then, when your physical condition impairs what you can do, of course it's fair to consider oneself disabled, and--further--to fight for and assert your rights as a disabled American. You deserve equal accommodations and equal access. The law says so, and those who have fought for those rights and who, despite their disabilities, have achieved great success deserve to be hailed as heroes.
At the same time, I don't feel disabled. And in looking at myself, I don't believe my Moebius Syndrome truly PREVENTS me from doing much of anything. Given that, I wouldn't feel right, I wouldn't feel honest, in claiming to be dishonest when I truly don't believe I am. Others with Moebius Syndrome of course are affected differently. And that's fine. But I don't think it would be a good idea to suggest that ALL who have Moebius Syndrome are disabled. Not because it's wrong or bad to be disabled. But because it wouldn't be true. And I want the focus on equal accommodations and equal rights and equal access to be there for those who truly need it and deserve it; and not on those who perhaps don't.
Wednesday, August 25, 2010
SUPPLEMENTS NEWS:
Do any of you take calcium? Be careful:
"Your doctor may have told you to take calcium supplements to protect your bones and reduce the risk of fractures. A new study in the British Medical Journal may turn that advice upside down. Researchers pooled the results of 15 medical trials in which a total of about 12,000 people were given calcium-supplement pills. They found that the people taking the calcium had a 30 percent increase in the risk of heart attack compared to those who did not. There was also an insignificant increase in the risk of stroke and death."
Read the whole thing. But as always, before making final decisions about things like this, it's always best to check with your doctor...
EXERCISE UPDATE:
Do you like to exercise? Trust me--it's good for you, for your metabolism and for your muscle tone (it's really helped mine, despite my Moebius). Well, if you like to work out, looks like you should use good up-tempo tunes to really get you going:
"For a study published last year, British researchers asked 12 healthy male college students to ride stationary bicycles while listening to music that, as the researchers primly wrote, “reflected current popular taste among the undergraduate population.” Each of the six songs chosen differed somewhat in tempo from the others.
The volunteers were told to ride the bicycles at a pace that they comfortably could maintain for 30 minutes. Then each rode in three separate trials, wearing headphones tuned to their preferred volume. Each had his heart rate, power output, pedal cadence, enjoyment of the music and feelings of how hard the riding felt monitored throughout each session. During one of the rides, the six songs ran at their normal tempos. During the other rides, the tempo of the tracks was slowed by 10 percent or increased by 10 percent. The riders were not informed about the tempo manipulations. But their riding changed significantly in response. When the tempo slowed, so did their pedaling and their entire affect. Their heart rates fell. Their mileage dropped. They reported that they didn’t like the music much. On the other hand, when the tempo of the songs was upped 10 percent, the men covered more miles in the same period of time, produced more power with each pedal stroke and increased their pedal cadences. Their heart rates rose. They reported enjoying the music — the same music — about 36 percent more than when it was slowed. But, paradoxically, they did not find the workout easier. Their sense of how hard they were working rose 2.4 percent. The up-tempo music didn’t mask the discomfort of the exercise. But it seemed to motivate them to push themselves. As the researchers wrote, when “the music was played faster, the participants chose to accept, and even prefer, a greater degree of effort.”
"My abiding faith in the possibility of self-transformation propelled me from one therapist to the next, ever on the lookout for something that seemed tormentingly out of reach, some scenario that would allow me to live more comfortably in my own skin. For all my doubts about specific tenets and individual psychoanalysts, I believed in the surpassing value of insight and the curative potential of treatment--and that may have been the problem to begin with. I failed to grasp that there was no magic to be had, that a therapist's insights weren't worth anything unless you made them your own and that nothing that had happened to me already could be undone, no matter how many times I went over it."--Daphne Merkin, "My Life in Therapy, NY Times 8/4/2010.
Merkin's piece was very interesting. She backtracks a bit from the above quote later in her essay, but not completely. It's important to be in touch with our feelings, to acknowledge our past and to deal with it rather than deny it; but we also have to move forward and not be paralyzed by it, either. And I think that's a good message for persons with a facial difference or with Moebius Syndrome, and I bet you all know what I mean...
Do any of you take calcium? Be careful:
"Your doctor may have told you to take calcium supplements to protect your bones and reduce the risk of fractures. A new study in the British Medical Journal may turn that advice upside down. Researchers pooled the results of 15 medical trials in which a total of about 12,000 people were given calcium-supplement pills. They found that the people taking the calcium had a 30 percent increase in the risk of heart attack compared to those who did not. There was also an insignificant increase in the risk of stroke and death."
Read the whole thing. But as always, before making final decisions about things like this, it's always best to check with your doctor...
EXERCISE UPDATE:
Do you like to exercise? Trust me--it's good for you, for your metabolism and for your muscle tone (it's really helped mine, despite my Moebius). Well, if you like to work out, looks like you should use good up-tempo tunes to really get you going:
"For a study published last year, British researchers asked 12 healthy male college students to ride stationary bicycles while listening to music that, as the researchers primly wrote, “reflected current popular taste among the undergraduate population.” Each of the six songs chosen differed somewhat in tempo from the others.
The volunteers were told to ride the bicycles at a pace that they comfortably could maintain for 30 minutes. Then each rode in three separate trials, wearing headphones tuned to their preferred volume. Each had his heart rate, power output, pedal cadence, enjoyment of the music and feelings of how hard the riding felt monitored throughout each session. During one of the rides, the six songs ran at their normal tempos. During the other rides, the tempo of the tracks was slowed by 10 percent or increased by 10 percent. The riders were not informed about the tempo manipulations. But their riding changed significantly in response. When the tempo slowed, so did their pedaling and their entire affect. Their heart rates fell. Their mileage dropped. They reported that they didn’t like the music much. On the other hand, when the tempo of the songs was upped 10 percent, the men covered more miles in the same period of time, produced more power with each pedal stroke and increased their pedal cadences. Their heart rates rose. They reported enjoying the music — the same music — about 36 percent more than when it was slowed. But, paradoxically, they did not find the workout easier. Their sense of how hard they were working rose 2.4 percent. The up-tempo music didn’t mask the discomfort of the exercise. But it seemed to motivate them to push themselves. As the researchers wrote, when “the music was played faster, the participants chose to accept, and even prefer, a greater degree of effort.”
"My abiding faith in the possibility of self-transformation propelled me from one therapist to the next, ever on the lookout for something that seemed tormentingly out of reach, some scenario that would allow me to live more comfortably in my own skin. For all my doubts about specific tenets and individual psychoanalysts, I believed in the surpassing value of insight and the curative potential of treatment--and that may have been the problem to begin with. I failed to grasp that there was no magic to be had, that a therapist's insights weren't worth anything unless you made them your own and that nothing that had happened to me already could be undone, no matter how many times I went over it."--Daphne Merkin, "My Life in Therapy, NY Times 8/4/2010.
Merkin's piece was very interesting. She backtracks a bit from the above quote later in her essay, but not completely. It's important to be in touch with our feelings, to acknowledge our past and to deal with it rather than deny it; but we also have to move forward and not be paralyzed by it, either. And I think that's a good message for persons with a facial difference or with Moebius Syndrome, and I bet you all know what I mean...
Tuesday, August 24, 2010
SPEAKING OF "I'VE NEVER HEARD OF THAT!" DEPT:
Many tell us, when they first meet us, that they've never heard of Moebius Syndrome before. But I've never heard of what this young girl has--a rare disorder that makes her unable to ever feel pain, even when she burns her hands as a baby:
"Years later, Ashlyn’s happy demeanor was diagnosed as congenital insensitivity to pain, a rare, incurable disorder caused by the mutation of one or more genes that control pain sensitivity. Later research from the University of Florida revealed in 2009 that the affected gene in her case was SCN9A, which produces the molecule that is involved in directing nerve impulses to the brain. A mutation that causes this molecule not to function leads to the inability to feel pain, but if it becomes overactive, then it leads to severe pain."
THE STUDIES CONTINUE:
For those who are interested, here's a link to an abstract of an article summarizing a clinical study of patients with Moebius Syndrome, done in South America. It didn't appear to me to find anything revolutionary, but it still may be worth reading...
MOEBIUS MEMORY:
It's 2002, and I am attending my first Moebius Syndrome conference. I think I was introducing myself to Matthew Joffe, who of course is on the board of the Moebius Syndrome Foundation. I'm sure I was a bit nervous...
Me: "Hi, nice to meet you, I'm a 40 year old adult with Moebius Syndrome."
Matthew: "I can see that."
You know, I bet he could...!
Many tell us, when they first meet us, that they've never heard of Moebius Syndrome before. But I've never heard of what this young girl has--a rare disorder that makes her unable to ever feel pain, even when she burns her hands as a baby:
"Years later, Ashlyn’s happy demeanor was diagnosed as congenital insensitivity to pain, a rare, incurable disorder caused by the mutation of one or more genes that control pain sensitivity. Later research from the University of Florida revealed in 2009 that the affected gene in her case was SCN9A, which produces the molecule that is involved in directing nerve impulses to the brain. A mutation that causes this molecule not to function leads to the inability to feel pain, but if it becomes overactive, then it leads to severe pain."
THE STUDIES CONTINUE:
For those who are interested, here's a link to an abstract of an article summarizing a clinical study of patients with Moebius Syndrome, done in South America. It didn't appear to me to find anything revolutionary, but it still may be worth reading...
MOEBIUS MEMORY:
It's 2002, and I am attending my first Moebius Syndrome conference. I think I was introducing myself to Matthew Joffe, who of course is on the board of the Moebius Syndrome Foundation. I'm sure I was a bit nervous...
Me: "Hi, nice to meet you, I'm a 40 year old adult with Moebius Syndrome."
Matthew: "I can see that."
You know, I bet he could...!
Monday, August 23, 2010
STORY TIME:
Today let me just tell a couple of stories. The first one is a...
MOEBIUS MOMENT:
It comes from way back when I was in the 2nd grade. That would have been 1970 (wow! A long time ago). I had just started a new school. My parents thought it had teachers and programs that could help me. I was kind of slow to develop. I didn't talk until I was 3.
But anyway, it was a new school. I didn't know anyone. But the teacher, Miss Ralya, was welcoming. And, I don't know...soon, I didn't feel so afraid. So one day, early in the school year, at recess, on a warm, sunny day, we were all outside playing...and someone fell down. Nobody was hurt. It was nothing serious. But the child (I forget who it was) didn't get up right away. So, to be funny, I ran towards my classmate, making a noise like a siren. Look at me! I'm an ambulance, come to help. (It was a sound effect my friend Marty from our neighborhood used to make. I liked it, so I copied it). Anyway, at first all the kids around me didn't know what to think. They just stared at me. But eventually they got what I was doing, and laughed. Which was what I wanted. And it seemed from that point on, I was accepted. I got teased, but it was the same kind of teasing everyone else got. My memories of my elementary school days are happy ones. And it just goes to show...children are pretty accepting. They are curious. If you have Moebius and they come across you, they want to know what happened to your face. But once they know they are satisfied. They don't let prejudices bother them. Maybe they have not had time to learn them.
In my case, I don't remember my classmates ever asking me what was wrong with my face. Maybe being that open about it just wasn't done then. Maybe teachers told them about it when I wasn't around. But it wasn't much of an issue. At least, I don't remember it being so.
"For many years I avoided situations where I could be stared at. I interpreted staring as hostile and prejudicial. Now, mainly from being around the honesty of children, I've learned some incredibly important life lessons. They need a few minutes to get used to me, and will take the time to do so unless their parents intervene out of concern that the child is not being courteous. Now I see that it is normal, that everyone needs a little time to get used to somebody unusual in appearance. I know I do. So I get it. That first ten minutes is not prejudice. It is adjustment time. Free time. Staring is not necessarily pleasant, but it is not hostile. It's okay."--David Roche, THE CHURCH OF 80% SINCERITY.
MOEBIUS MOMENT # 2:
This one happened just today. Both my wife and I have trouble with backing a car up, be it from a parking place, out of a driveway, etc. We can do it. But with Moebius, you don't have the same vision or balance that others have. So backing up can be tricky. To avoid problems, then, when my wife has to be first out on a given day, I park my car on the street in front of our house. Right at the curb. It avoids problems. Or so you would think. For, today, our neighbor across the street backed her car out of her driveway...and hit my car, right across the street. Just an accident, nothing major, nobody hurt.
But our car wouldn't have been in harm's way if we didn't have Moebius. But we do, and so stuff happens. We just have to deal with it. And we will...
Today let me just tell a couple of stories. The first one is a...
MOEBIUS MOMENT:
It comes from way back when I was in the 2nd grade. That would have been 1970 (wow! A long time ago). I had just started a new school. My parents thought it had teachers and programs that could help me. I was kind of slow to develop. I didn't talk until I was 3.
But anyway, it was a new school. I didn't know anyone. But the teacher, Miss Ralya, was welcoming. And, I don't know...soon, I didn't feel so afraid. So one day, early in the school year, at recess, on a warm, sunny day, we were all outside playing...and someone fell down. Nobody was hurt. It was nothing serious. But the child (I forget who it was) didn't get up right away. So, to be funny, I ran towards my classmate, making a noise like a siren. Look at me! I'm an ambulance, come to help. (It was a sound effect my friend Marty from our neighborhood used to make. I liked it, so I copied it). Anyway, at first all the kids around me didn't know what to think. They just stared at me. But eventually they got what I was doing, and laughed. Which was what I wanted. And it seemed from that point on, I was accepted. I got teased, but it was the same kind of teasing everyone else got. My memories of my elementary school days are happy ones. And it just goes to show...children are pretty accepting. They are curious. If you have Moebius and they come across you, they want to know what happened to your face. But once they know they are satisfied. They don't let prejudices bother them. Maybe they have not had time to learn them.
In my case, I don't remember my classmates ever asking me what was wrong with my face. Maybe being that open about it just wasn't done then. Maybe teachers told them about it when I wasn't around. But it wasn't much of an issue. At least, I don't remember it being so.
"For many years I avoided situations where I could be stared at. I interpreted staring as hostile and prejudicial. Now, mainly from being around the honesty of children, I've learned some incredibly important life lessons. They need a few minutes to get used to me, and will take the time to do so unless their parents intervene out of concern that the child is not being courteous. Now I see that it is normal, that everyone needs a little time to get used to somebody unusual in appearance. I know I do. So I get it. That first ten minutes is not prejudice. It is adjustment time. Free time. Staring is not necessarily pleasant, but it is not hostile. It's okay."--David Roche, THE CHURCH OF 80% SINCERITY.
MOEBIUS MOMENT # 2:
This one happened just today. Both my wife and I have trouble with backing a car up, be it from a parking place, out of a driveway, etc. We can do it. But with Moebius, you don't have the same vision or balance that others have. So backing up can be tricky. To avoid problems, then, when my wife has to be first out on a given day, I park my car on the street in front of our house. Right at the curb. It avoids problems. Or so you would think. For, today, our neighbor across the street backed her car out of her driveway...and hit my car, right across the street. Just an accident, nothing major, nobody hurt.
But our car wouldn't have been in harm's way if we didn't have Moebius. But we do, and so stuff happens. We just have to deal with it. And we will...
Friday, August 20, 2010
GET SOME SLEEP:
Our experts unanimously agreed: Sleep is free and has virtually zero health drawbacks, making it the one treat no one should skimp on. Pillow time gives you energy, bolsters your immune system, boosts your memory, and even helps you get (or stay) slim. Cut slumber short, and you'll find it harder to make decisions (no surprise to anyone who's struggled through a workday after a too-late bedtime). Plus, you'll increase your risk for anxiety and depression. "Lack of sleep has also been associated with hypertension, glucose intolerance, and belly fat -- all risk factors for heart disease," says Nieca Goldberg, M.D., medical director of the New York University-Langone Women's Heart Program. Aim for seven to eight hours of sleep a night, the amount that studies show is ideal. If you're up-and-at-'em on less, don't sweat it: Some people are just wired that way, Goldberg says. But if you have trouble falling or staying asleep, or can't seem to drag yourself out of bed on a regular basis, talk to your doctor about possible underlying causes, such as anxiety or sleep apnea."
I can certainly attest to this. Getting a good night's sleep makes you feel better. A lack of sleep makes the days seem long, the work seem hard, and increases irritability...
Read the whole piece--it suggests that playing hooky can be good for you, too. I'm all for that!
TODAY'S MOEBIUS MOMENT:
Actually it's a memory. I was at our high school's mixer. It was held during the school day on the Friday of the first week of school. It was an outdoor thing, where we played silly games, etc. So one game was--you had to pass an orange from person to person, all the way to the end of the line. First team to do it wins. Only thing? You had to pass the orange without using your hands--by holding it in that crook between your chin and your neck, and passing it to the other person that way. Just my luck...I'm standing next to this girl, who I really didn't know, and who wasn't a popular cheerleader type, but who...well, just wasn't the type who wanted much to do with someone like me. When the orange came to us, we kind of stood there awkwardly and then I just handed it to her in my hand. Anything to get that over with! Ugh. It brings all those awkward feelings back just thinking about it...
But, you know what--you live with those things, you get past them, you move on, survive, and advance.
"I do believe that we each have a place inside of us where fear resides, that fear of being unworthy, a sinner, carrying bad karma, untouchable. Seeing and accepting one's "flawed" condition is a core spiritual experience, and essential step in developing emotional maturity. It is a basic human task, the task of redemption, and it is hard work. There is no turning aside. If we ignore this soul retrieval work, we remain fragmented and powerless, vulnerable to fear, addiction, and the metaphor of victimhood. Because that place of fear is where predators and manipulators of all sorts--sexual, financial, religious, political, warmongering--come to feed. And that is where cruelty is born--in fear of not being acceptable, worthy, valued and loved. Paradoxically, I have found wholeness through (and with) what at first seemed to be my flaws. Working through my fear and shame, I have come to discover that I am whole. I know now when people turn away, they're not turning away from my face, but from themselves, from their own fears."--David Roche, THE CHURCH OF 80% SINCERITY.
Our experts unanimously agreed: Sleep is free and has virtually zero health drawbacks, making it the one treat no one should skimp on. Pillow time gives you energy, bolsters your immune system, boosts your memory, and even helps you get (or stay) slim. Cut slumber short, and you'll find it harder to make decisions (no surprise to anyone who's struggled through a workday after a too-late bedtime). Plus, you'll increase your risk for anxiety and depression. "Lack of sleep has also been associated with hypertension, glucose intolerance, and belly fat -- all risk factors for heart disease," says Nieca Goldberg, M.D., medical director of the New York University-Langone Women's Heart Program. Aim for seven to eight hours of sleep a night, the amount that studies show is ideal. If you're up-and-at-'em on less, don't sweat it: Some people are just wired that way, Goldberg says. But if you have trouble falling or staying asleep, or can't seem to drag yourself out of bed on a regular basis, talk to your doctor about possible underlying causes, such as anxiety or sleep apnea."
I can certainly attest to this. Getting a good night's sleep makes you feel better. A lack of sleep makes the days seem long, the work seem hard, and increases irritability...
Read the whole piece--it suggests that playing hooky can be good for you, too. I'm all for that!
TODAY'S MOEBIUS MOMENT:
Actually it's a memory. I was at our high school's mixer. It was held during the school day on the Friday of the first week of school. It was an outdoor thing, where we played silly games, etc. So one game was--you had to pass an orange from person to person, all the way to the end of the line. First team to do it wins. Only thing? You had to pass the orange without using your hands--by holding it in that crook between your chin and your neck, and passing it to the other person that way. Just my luck...I'm standing next to this girl, who I really didn't know, and who wasn't a popular cheerleader type, but who...well, just wasn't the type who wanted much to do with someone like me. When the orange came to us, we kind of stood there awkwardly and then I just handed it to her in my hand. Anything to get that over with! Ugh. It brings all those awkward feelings back just thinking about it...
But, you know what--you live with those things, you get past them, you move on, survive, and advance.
"I do believe that we each have a place inside of us where fear resides, that fear of being unworthy, a sinner, carrying bad karma, untouchable. Seeing and accepting one's "flawed" condition is a core spiritual experience, and essential step in developing emotional maturity. It is a basic human task, the task of redemption, and it is hard work. There is no turning aside. If we ignore this soul retrieval work, we remain fragmented and powerless, vulnerable to fear, addiction, and the metaphor of victimhood. Because that place of fear is where predators and manipulators of all sorts--sexual, financial, religious, political, warmongering--come to feed. And that is where cruelty is born--in fear of not being acceptable, worthy, valued and loved. Paradoxically, I have found wholeness through (and with) what at first seemed to be my flaws. Working through my fear and shame, I have come to discover that I am whole. I know now when people turn away, they're not turning away from my face, but from themselves, from their own fears."--David Roche, THE CHURCH OF 80% SINCERITY.
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.
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.
Wednesday, August 18, 2010
BIG NEW FACEBOOK ANNOUNCEMENT:
Many of my Moebius friends are on Facebook, and so you'll all want to note this new gadget coming soon:
"Foursquare, Gowalla and other mobile check-in services could get some big competition on Wednesday. Really big. Facebook, the 800-pound gorilla of the social-networking world, has scheduled a media event for Wednesday afternoon at its Palo Alto, California, headquarters. Virtually everybody paying attention predicts the site will announce its long-expected leap into the world of location-based networking. That might allow users to tell friends exactly where they are -- using the GPS on their phones -- in addition to what they're doing and thinking."
BACK TO SCHOOL:
Any Moebius moms and dads out there getting ready to send the kiddos back to school? Any young persons with Moebius out there preparing to go back? Looking to buy supplies? Some interesting news here:
"With the first day of school fast approaching, many retailers are hoping to lure back-to-school shoppers — and boost revenue — with deep discounts and bargains. Recession-scarred shoppers, on the other hand, are taking their time to compare prices and holding out to see whether they’ll be rewarded with even bigger bargains if they wait. “The consumer is not in any rush,” said Marshal Cohen...Retailers from Abercrombie & Fitch to Wal-Mart are offering deals aimed at students and their parents, hoping to improve on last year's dismal results. Wal-Mart’s website is offering free shipping on items such such as furniture and electronics for college students, as well as school uniforms for the younger set. Amazon.com has a special shipping offer specifically for college students, plus bargains on student-oriented items such as printers, microwaves, coffee makers and textbooks. But despite tempting offers, Cohen said many shoppers are watching and waiting, and some might even put off their traditional back-to-school spending until well into the school year, when the weather gets colder and kids have a better idea of what’s in style at their school."
Sounds like there's good advice there---waiting to buy might be a good idea. The deals will get even better. Hey, in many ways, people connected with Moebius Syndrome or any facial difference are just like anybody else--they all want to save money if they can.
INSPIRATION OF THE DAY:
"Bailey Francis isn't old enough to go to school, but the toddler knew enough to save her great-great-grandmother's life. Bailey, who just turned 3, saved her 78-year-old great-great-granny's life back in February with the press of a button. Davye "Sue" Heard wears a medical-alert necklace. She repeatedly told her great-great-granddaughter that the necklace was only for emergencies. "I said, 'No, that is a 911 necklace. When Granny won't talk to you, then that is when you can press that button,'" she said. When Heard stopped talking, Bailey did what she was told. Heard started feeling weak from a diabetes complication. She sat down on the bed and passed out. That's when Bailey pushed the button, alerting paramedics of an emergency."
"The miracles I believe in are mini-miracles, manageable miracles, bite-size miracles, miracles-lite, one-minute miracles. They are miracles built of dreams, built of tomatoes, built of kisses, built of choice after choice in the face of uncertainty and fear. They are miracles built of grace. As we open to grace, we are miracle makers."--David Roche, THE CHURCH OF 80% SINCERITY.
Many of my Moebius friends are on Facebook, and so you'll all want to note this new gadget coming soon:
"Foursquare, Gowalla and other mobile check-in services could get some big competition on Wednesday. Really big. Facebook, the 800-pound gorilla of the social-networking world, has scheduled a media event for Wednesday afternoon at its Palo Alto, California, headquarters. Virtually everybody paying attention predicts the site will announce its long-expected leap into the world of location-based networking. That might allow users to tell friends exactly where they are -- using the GPS on their phones -- in addition to what they're doing and thinking."
BACK TO SCHOOL:
Any Moebius moms and dads out there getting ready to send the kiddos back to school? Any young persons with Moebius out there preparing to go back? Looking to buy supplies? Some interesting news here:
"With the first day of school fast approaching, many retailers are hoping to lure back-to-school shoppers — and boost revenue — with deep discounts and bargains. Recession-scarred shoppers, on the other hand, are taking their time to compare prices and holding out to see whether they’ll be rewarded with even bigger bargains if they wait. “The consumer is not in any rush,” said Marshal Cohen...Retailers from Abercrombie & Fitch to Wal-Mart are offering deals aimed at students and their parents, hoping to improve on last year's dismal results. Wal-Mart’s website is offering free shipping on items such such as furniture and electronics for college students, as well as school uniforms for the younger set. Amazon.com has a special shipping offer specifically for college students, plus bargains on student-oriented items such as printers, microwaves, coffee makers and textbooks. But despite tempting offers, Cohen said many shoppers are watching and waiting, and some might even put off their traditional back-to-school spending until well into the school year, when the weather gets colder and kids have a better idea of what’s in style at their school."
Sounds like there's good advice there---waiting to buy might be a good idea. The deals will get even better. Hey, in many ways, people connected with Moebius Syndrome or any facial difference are just like anybody else--they all want to save money if they can.
INSPIRATION OF THE DAY:
"Bailey Francis isn't old enough to go to school, but the toddler knew enough to save her great-great-grandmother's life. Bailey, who just turned 3, saved her 78-year-old great-great-granny's life back in February with the press of a button. Davye "Sue" Heard wears a medical-alert necklace. She repeatedly told her great-great-granddaughter that the necklace was only for emergencies. "I said, 'No, that is a 911 necklace. When Granny won't talk to you, then that is when you can press that button,'" she said. When Heard stopped talking, Bailey did what she was told. Heard started feeling weak from a diabetes complication. She sat down on the bed and passed out. That's when Bailey pushed the button, alerting paramedics of an emergency."
"The miracles I believe in are mini-miracles, manageable miracles, bite-size miracles, miracles-lite, one-minute miracles. They are miracles built of dreams, built of tomatoes, built of kisses, built of choice after choice in the face of uncertainty and fear. They are miracles built of grace. As we open to grace, we are miracle makers."--David Roche, THE CHURCH OF 80% SINCERITY.
Tuesday, August 17, 2010
SOME GOOD NEWS FOR EVERYBODY, WHETHER THEY HAVE A FACIAL DIFFERENCE OR NOT:
Chocolate lovers especially will rejoice--
"We all know that many women love chocolate. But does chocolate, in effect, love them back? Well, a new study provides new evidence that eating chocolate can protect a woman's heart. Murray Middleman of Harvard Medical School and his colleagues studied 31,823 middle-aged and elderly Swedish women, examining how much chocolate the women ate compared with their risk for heart failure over a nine-year period. Women who consumed one or two servings each week of what is considered high-quality chocolate because it contains a higher density of cocoa had a 32 percent lower risk of developing heart failure, the researchers reported in the journal Circulation: Heart Failure, which is published by the American Heart Association. Those who had one to three servings per month had a 26 percent lower risk."
Mmmm, dark chocolate especially is yummy stuff.
RANDOM THOUGHTS ON FREQUENTLY-ASKED QUESTIONS:
Can persons with Moebius Sydrome drive a car?
Absolutely. And we do it all the time. I drive. My wife drives. Most of the adults with Moebius we know drive. If you have Moebius, don't drive yet, but are wondering...then yes, know that you can too. You just have to compensate for things. I have lousy peripheral vision and can only see out of one eye at a time. So I'm constantly swiveling my head from side to side, making sure I'm seeing everything I need to see. When I'm on the freeway and need to change lanes, I don't just rely on my rear-view mirror...I turn my head to check for sure that there's no car beside me. And I try to avoid difficult situations--for example, leaving a store or some place and trying to make a left turn onto a very busy street with no stoplight to help you. I try to avoid such things. Turn right, and make a U-turn later. Or go to an intersection where there is a light. So what if that takes a little longer. It's better than an accident; that REALLY makes you lose time.
"In life, you need to be alert just in case something good does happen. Those times when you realize that life is good only last about half a second. They are not as sweeping or dramatic as miracles. They can slip up on you quietly. They can be ornery. They can be disguised. They can be very scary. In your whole life you only get a total of maybe four minutes of these moments of grace. You have to learn to grab on to and extend the moment."--David Roche, THE CHURCH OF 80% SINCERITY.
Chocolate lovers especially will rejoice--
"We all know that many women love chocolate. But does chocolate, in effect, love them back? Well, a new study provides new evidence that eating chocolate can protect a woman's heart. Murray Middleman of Harvard Medical School and his colleagues studied 31,823 middle-aged and elderly Swedish women, examining how much chocolate the women ate compared with their risk for heart failure over a nine-year period. Women who consumed one or two servings each week of what is considered high-quality chocolate because it contains a higher density of cocoa had a 32 percent lower risk of developing heart failure, the researchers reported in the journal Circulation: Heart Failure, which is published by the American Heart Association. Those who had one to three servings per month had a 26 percent lower risk."
Mmmm, dark chocolate especially is yummy stuff.
RANDOM THOUGHTS ON FREQUENTLY-ASKED QUESTIONS:
Can persons with Moebius Sydrome drive a car?
Absolutely. And we do it all the time. I drive. My wife drives. Most of the adults with Moebius we know drive. If you have Moebius, don't drive yet, but are wondering...then yes, know that you can too. You just have to compensate for things. I have lousy peripheral vision and can only see out of one eye at a time. So I'm constantly swiveling my head from side to side, making sure I'm seeing everything I need to see. When I'm on the freeway and need to change lanes, I don't just rely on my rear-view mirror...I turn my head to check for sure that there's no car beside me. And I try to avoid difficult situations--for example, leaving a store or some place and trying to make a left turn onto a very busy street with no stoplight to help you. I try to avoid such things. Turn right, and make a U-turn later. Or go to an intersection where there is a light. So what if that takes a little longer. It's better than an accident; that REALLY makes you lose time.
"In life, you need to be alert just in case something good does happen. Those times when you realize that life is good only last about half a second. They are not as sweeping or dramatic as miracles. They can slip up on you quietly. They can be ornery. They can be disguised. They can be very scary. In your whole life you only get a total of maybe four minutes of these moments of grace. You have to learn to grab on to and extend the moment."--David Roche, THE CHURCH OF 80% SINCERITY.
Monday, August 16, 2010
AWAY FROM HOME? FEELING HOMESICK? YOU'RE NOT ALONE:
People with Moebius Syndrome love the familiar; they love what they know. Change, as those with Moebius and as family members of those with it know, can be hard. But know this: you're not alone. A lot of people feel homesick, as CNN reports:
"There was nothing but excitement for Keila Pena-Hernandez when she first stepped onto the grounds of the University of Missouri. New school. New city. A new phase of her life. "It's just like wow, wow, wow! I was just excited that I'm in new surroundings," she said. By the third week, the novelty of her new surroundings had worn off. The then 27-year-old health informatics doctoral student from Puerto Rico found herself lying on her bed after classes with the lights turned off and gazing out the window into the sky. All she could think of were the faces of friends and family. "I started feeling homesick," she recalled. "This is nice, but this is not really home. The gym is awesome, but I didn't know anyone here"...This month, as thousands of freshmen and graduate students flock to colleges to begin a new academic year, many will be leaving home, some for the first time. As routines are replaced with new social and academic pressures, and home by a dormitory full of strangers, homesickness -- the longing ache for the familiar, friends or grandma's cooking -- sets in. Pena-Hernandez knows all about that; she's felt it since she left home in 2004.
Even so, only lately has there emerged a clearer sense of what homesickness is -- a distinct adjustment disorder with identifiable symptoms -- and what causes it. In a paper co-written by Chris Thurber and Edward Walton published in Pediatrics, the journal of the American Academy of Pediatrics, homesickness is defined as "distress and functional impairment caused by an actual or anticipated separation from home and attachment objects such as parents".....Those who suffer from the condition feel some form of anxiety, sadness and nervousness, and most distinctly, obsessive preoccupation with thoughts of home, Thurber said.despite the way it's coined, homesickness isn't necessarily about home. And neither is it exactly an illness, experts said. Instead, it stems from our instinctive need for love, protection and security -- feelings and qualities usually associated with home, said Josh Klapow, a clinical psychologist and associate professor at the University of Alabama's School of Public Health. When these qualities aren't present in a new environment, we begin to long for them -- and hence home. "You're not literally just missing your house. You're missing what's normal, what is routine, the larger sense of social space, because those are the things that help us survive," Klapow said."
So you're not weird for feeling homesick. You're not strange for disliking change. But remember there are ways to deal with it, and to overcome it.
MORE BRAIN STUDIES:
Naturally people with Moebius are always interested to learn about what scientists are studying concerning the brain these days...and what they're learning from it. Today's news? Some scientists wonder what effect it has on the brain if we take away all our current technological toys--cell phones, e-mail, laptops, etc:
"Mr. Braver, a psychology professor at Washington University in St. Louis, was one of five neuroscientists on an unusual journey. They spent a week in late May in this remote area of southern Utah, rafting the San Juan River, camping on the soft banks and hiking the tributary canyons. It was a primitive trip with a sophisticated goal: to understand how heavy use of digital devices and other technology changes how we think and behave, and how a retreat into nature might reverse those effects. Cellphones do not work here, e-mail is inaccessible and laptops have been left behind. It is a trip into the heart of silence — increasingly rare now that people can get online even in far-flung vacation spots. As they head down the tight curves the San Juan has carved from ancient sandstone, the travelers will, not surprisingly, unwind, sleep better and lose the nagging feeling to check for a phone in the pocket. But the significance of such changes is a matter of debate for them...the trip’s organizer, David Strayer, a psychology professor at the University of Utah, says that studying what happens when we step away from our devices and rest our brains — in particular, how attention, memory and learning are affected — is important science. “Attention is the holy grail,” Mr. Strayer says. “Everything that you’re conscious of, everything you let in, everything you remember and you forget, depends on it.” Echoing other researchers, Mr. Strayer says that understanding how attention works could help in the treatment of a host of maladies, like attention deficit disorder, schizophrenia and depression. And he says that on a day-to-day basis, too much digital stimulation can “take people who would be functioning O.K. and put them in a range where they’re not psychologically healthy.”
Note however that other scientists are skeptical. And no one has reached, yet, any hard and fast conclusions...
"Making mistakes is how most everybody learns about relationships and the full range of human behavior. I was learning. No miracles, but grace--grace in my mistakes. You can look for the grace years after making the mistake. It is still fresh, growing from the ground nearby, waiting for you to notice."--David Roche, THE CHURCH OF 80% SINCERITY.
People with Moebius Syndrome love the familiar; they love what they know. Change, as those with Moebius and as family members of those with it know, can be hard. But know this: you're not alone. A lot of people feel homesick, as CNN reports:
"There was nothing but excitement for Keila Pena-Hernandez when she first stepped onto the grounds of the University of Missouri. New school. New city. A new phase of her life. "It's just like wow, wow, wow! I was just excited that I'm in new surroundings," she said. By the third week, the novelty of her new surroundings had worn off. The then 27-year-old health informatics doctoral student from Puerto Rico found herself lying on her bed after classes with the lights turned off and gazing out the window into the sky. All she could think of were the faces of friends and family. "I started feeling homesick," she recalled. "This is nice, but this is not really home. The gym is awesome, but I didn't know anyone here"...This month, as thousands of freshmen and graduate students flock to colleges to begin a new academic year, many will be leaving home, some for the first time. As routines are replaced with new social and academic pressures, and home by a dormitory full of strangers, homesickness -- the longing ache for the familiar, friends or grandma's cooking -- sets in. Pena-Hernandez knows all about that; she's felt it since she left home in 2004.
Even so, only lately has there emerged a clearer sense of what homesickness is -- a distinct adjustment disorder with identifiable symptoms -- and what causes it. In a paper co-written by Chris Thurber and Edward Walton published in Pediatrics, the journal of the American Academy of Pediatrics, homesickness is defined as "distress and functional impairment caused by an actual or anticipated separation from home and attachment objects such as parents".....Those who suffer from the condition feel some form of anxiety, sadness and nervousness, and most distinctly, obsessive preoccupation with thoughts of home, Thurber said.despite the way it's coined, homesickness isn't necessarily about home. And neither is it exactly an illness, experts said. Instead, it stems from our instinctive need for love, protection and security -- feelings and qualities usually associated with home, said Josh Klapow, a clinical psychologist and associate professor at the University of Alabama's School of Public Health. When these qualities aren't present in a new environment, we begin to long for them -- and hence home. "You're not literally just missing your house. You're missing what's normal, what is routine, the larger sense of social space, because those are the things that help us survive," Klapow said."
So you're not weird for feeling homesick. You're not strange for disliking change. But remember there are ways to deal with it, and to overcome it.
MORE BRAIN STUDIES:
Naturally people with Moebius are always interested to learn about what scientists are studying concerning the brain these days...and what they're learning from it. Today's news? Some scientists wonder what effect it has on the brain if we take away all our current technological toys--cell phones, e-mail, laptops, etc:
"Mr. Braver, a psychology professor at Washington University in St. Louis, was one of five neuroscientists on an unusual journey. They spent a week in late May in this remote area of southern Utah, rafting the San Juan River, camping on the soft banks and hiking the tributary canyons. It was a primitive trip with a sophisticated goal: to understand how heavy use of digital devices and other technology changes how we think and behave, and how a retreat into nature might reverse those effects. Cellphones do not work here, e-mail is inaccessible and laptops have been left behind. It is a trip into the heart of silence — increasingly rare now that people can get online even in far-flung vacation spots. As they head down the tight curves the San Juan has carved from ancient sandstone, the travelers will, not surprisingly, unwind, sleep better and lose the nagging feeling to check for a phone in the pocket. But the significance of such changes is a matter of debate for them...the trip’s organizer, David Strayer, a psychology professor at the University of Utah, says that studying what happens when we step away from our devices and rest our brains — in particular, how attention, memory and learning are affected — is important science. “Attention is the holy grail,” Mr. Strayer says. “Everything that you’re conscious of, everything you let in, everything you remember and you forget, depends on it.” Echoing other researchers, Mr. Strayer says that understanding how attention works could help in the treatment of a host of maladies, like attention deficit disorder, schizophrenia and depression. And he says that on a day-to-day basis, too much digital stimulation can “take people who would be functioning O.K. and put them in a range where they’re not psychologically healthy.”
Note however that other scientists are skeptical. And no one has reached, yet, any hard and fast conclusions...
"Making mistakes is how most everybody learns about relationships and the full range of human behavior. I was learning. No miracles, but grace--grace in my mistakes. You can look for the grace years after making the mistake. It is still fresh, growing from the ground nearby, waiting for you to notice."--David Roche, THE CHURCH OF 80% SINCERITY.
Friday, August 13, 2010
A RANDOM THOUGHT:
It occurred to me today: we with Moebius syndrome focus a lot on how we're different than others. Understandably so. We are different.
But we also are just like other people, too. After all, we all breathe in, breathe out...right?
We want good jobs. We want to get ahead in life. We want to do things we enjoy. We want to do the right thing. We want to have significant relationships with others. We want to marry and have children. We want to succeed.
I think it frustrates us, and I think it isn't good for us, to pretend that the differences we have do not exist. We must not deny them. We must be willing to talk about them. At the same time, we want what others want. And we can achieve what others can achieve. We mustn't let anyone tell us anything different.
"Whenever I have prayed for miracles, or expected miracles, or asked for miracles, I developed a frame of mind, or I should say a "frame of soul", that expected a dump truck to back up and tip a load of Lotto winnings on me. This hasn't happened yet. No miracle. Hoping for miracles always makes me lazy. And anxious. And just a tad resentful. And somewhat envious of people I consider unfairly rich or confident or content with life...We wish for miracles but the truth is that we have to choose and choose again, and the karmic redemptive changes come slowly and in ways we do not always understand. The good things happen a little bit at a time; we do not always recognize them as good. As we grow, as we accept ourselves as flawed creatures, grace is there to help us."--David Roche, THR CHURCH OF 80% SINCERITY.
It occurred to me today: we with Moebius syndrome focus a lot on how we're different than others. Understandably so. We are different.
But we also are just like other people, too. After all, we all breathe in, breathe out...right?
We want good jobs. We want to get ahead in life. We want to do things we enjoy. We want to do the right thing. We want to have significant relationships with others. We want to marry and have children. We want to succeed.
I think it frustrates us, and I think it isn't good for us, to pretend that the differences we have do not exist. We must not deny them. We must be willing to talk about them. At the same time, we want what others want. And we can achieve what others can achieve. We mustn't let anyone tell us anything different.
"Whenever I have prayed for miracles, or expected miracles, or asked for miracles, I developed a frame of mind, or I should say a "frame of soul", that expected a dump truck to back up and tip a load of Lotto winnings on me. This hasn't happened yet. No miracle. Hoping for miracles always makes me lazy. And anxious. And just a tad resentful. And somewhat envious of people I consider unfairly rich or confident or content with life...We wish for miracles but the truth is that we have to choose and choose again, and the karmic redemptive changes come slowly and in ways we do not always understand. The good things happen a little bit at a time; we do not always recognize them as good. As we grow, as we accept ourselves as flawed creatures, grace is there to help us."--David Roche, THR CHURCH OF 80% SINCERITY.
Thursday, August 12, 2010
FOODIE CORNER:
This struck me as amusing:
"I am a cereal junkie. I just can’t stop after one bowl. If I didn’t know any better, I’d mash flakes, loops, clusters and oats into my face until I blacked out. Won’t you lend me some sugar? There is something about the consistent nature of cereal – the ease and accessibility of it in a crunch. There are no Trix up its sleeve: Bowl. Spoon. Cereal. Milk. Eat. Repeat....I’ve heard the first step to recovery is denial, but I would go so far as to stake claim that cereal is indeed the perfect food - an (apple) jack of many trades. You can eat it for breakfast, for lunch, for dinner, for dessert. It's good for mid-afternoon snacking, late-night noshing and on-the-go munching. For many, our first encounter into solid food territory is even an “O” of some sort. We gum wide-eyed, curiously confused and satiated by the grainy goodness that our parents just airplane swooped into our mouths."
Both my wife and son like cereal. I like it too, though I don't always eat it...but then suddenly I'll buy a bowl of Frosted Flakes and go on a Tony-the-Tiger-ish binge. I get the sense many persons with Moebius like it, too; the right cereal can be easy to eat.
THOUGHT FOR THE DAY:
People today talk a lot about "diversity." Often they mean racial or ethnic diversity. But we, those with a facial difference--we're a part of the culture of "diversity", too. We look different. We've had unique experiences. Why don't more people in America see us an examples of diversity? They should.
"My face is unique but my experiences are wholly human. My face is a gift because I have been forced to find my inner beauty. That is a universal human need."--David Roche, THE CHURCH OF 80% SINCERITY.
This struck me as amusing:
"I am a cereal junkie. I just can’t stop after one bowl. If I didn’t know any better, I’d mash flakes, loops, clusters and oats into my face until I blacked out. Won’t you lend me some sugar? There is something about the consistent nature of cereal – the ease and accessibility of it in a crunch. There are no Trix up its sleeve: Bowl. Spoon. Cereal. Milk. Eat. Repeat....I’ve heard the first step to recovery is denial, but I would go so far as to stake claim that cereal is indeed the perfect food - an (apple) jack of many trades. You can eat it for breakfast, for lunch, for dinner, for dessert. It's good for mid-afternoon snacking, late-night noshing and on-the-go munching. For many, our first encounter into solid food territory is even an “O” of some sort. We gum wide-eyed, curiously confused and satiated by the grainy goodness that our parents just airplane swooped into our mouths."
Both my wife and son like cereal. I like it too, though I don't always eat it...but then suddenly I'll buy a bowl of Frosted Flakes and go on a Tony-the-Tiger-ish binge. I get the sense many persons with Moebius like it, too; the right cereal can be easy to eat.
THOUGHT FOR THE DAY:
People today talk a lot about "diversity." Often they mean racial or ethnic diversity. But we, those with a facial difference--we're a part of the culture of "diversity", too. We look different. We've had unique experiences. Why don't more people in America see us an examples of diversity? They should.
"My face is unique but my experiences are wholly human. My face is a gift because I have been forced to find my inner beauty. That is a universal human need."--David Roche, THE CHURCH OF 80% SINCERITY.
Wednesday, August 11, 2010
REMEMBER WHEN?
Hey, Moebius persons, remember Phys Ed class back in high school or junior high? I love sports, actually; especially football, baseball, basketball...but I was never a good athlete. Were you? Having Moebius can make being physically coordinated difficult, plus sometimes we suffer from low muscle tone. But here's some good news, maybe--in the Washington DC area, educators are changing how they do PE:
"This is Hawkins's health and physical education class, but it's not the PE that these preschoolers' parents probably remember. The days of students fretting over being the last one picked during volleyball or the first one tagged in dodge ball are fading in many D.C. area schools as physical education classes, such as this one, focus more on individual fitness, personal growth and development. "The trend is to move away from competitiveness," Hawkins says. When his preschoolers' class is over, Hawkins shifts his attention to his next class, eighth-graders. Beginning with a tutorial on aerobics, Hawkins asks what muscles each activity works, and he and the kids go through a list. When the students overlook the central one, he drops a hint: "It's been beating since before you were born." The students bound into step aerobics and then begin a game of "softball," a batless version with no teams and a small, yellow rubber ball."
I certainly remember being picked last. This could be a good trend. And it highlights an important thing--yes, being a good athlete isn't the easiest thing in the world for us. But we can still exercise and build up our bodies. And we should. I do sit-ups every day, and use hand weights. They help me and my muscle tone, and speed up my metabolism. You can do it, too.
And hey, the NY Times reports today that exercise may help moderate any anger you're feeling, too.
INSPIRATION OF THE DAY:
Read the story of Aidan, from Ireland, an adult with Moebius Syndrome, who has many, many accomplishments.
Aidan writes: "One of the things that was always instilled in me as a child was not to let my disability hold me back and I've pretty much stuck to this ever since, always relentless in obtaining or achieving a goal that I set for myself." Amen!
"...I began to talk about my face. When I began to perform, I became part of a community of performers with disabilities. Slowly I stopped pretending to be normal and began to accept myself the way I was...We do not try to change people by having them conform to an ideal. We try to accept people as they are. We adjust our beliefs and practices to conform to the reality of being human."--David Roche, THE CHURCH OF 80% SINCERITY.
That's just it--we shouldn't let any part of us, what we have, who we are, hold us back. At the same time, we shouldn't be afraid to talk about it, to express ourselves, to discuss our successes, our frustrations, our difficulties. Sometimes in the past I think there have been those who worried that talking too much about Moebius Syndrome, or a facial difference, or any physical condition one might have, meant one would allow it to stop you, to woe-is-me thinking, to make it a crutch that explains why you haven't done something. But talking about it doesn't have to mean that at all. Rather, it can be part of what leads us to success.
Hey, Moebius persons, remember Phys Ed class back in high school or junior high? I love sports, actually; especially football, baseball, basketball...but I was never a good athlete. Were you? Having Moebius can make being physically coordinated difficult, plus sometimes we suffer from low muscle tone. But here's some good news, maybe--in the Washington DC area, educators are changing how they do PE:
"This is Hawkins's health and physical education class, but it's not the PE that these preschoolers' parents probably remember. The days of students fretting over being the last one picked during volleyball or the first one tagged in dodge ball are fading in many D.C. area schools as physical education classes, such as this one, focus more on individual fitness, personal growth and development. "The trend is to move away from competitiveness," Hawkins says. When his preschoolers' class is over, Hawkins shifts his attention to his next class, eighth-graders. Beginning with a tutorial on aerobics, Hawkins asks what muscles each activity works, and he and the kids go through a list. When the students overlook the central one, he drops a hint: "It's been beating since before you were born." The students bound into step aerobics and then begin a game of "softball," a batless version with no teams and a small, yellow rubber ball."
I certainly remember being picked last. This could be a good trend. And it highlights an important thing--yes, being a good athlete isn't the easiest thing in the world for us. But we can still exercise and build up our bodies. And we should. I do sit-ups every day, and use hand weights. They help me and my muscle tone, and speed up my metabolism. You can do it, too.
And hey, the NY Times reports today that exercise may help moderate any anger you're feeling, too.
INSPIRATION OF THE DAY:
Read the story of Aidan, from Ireland, an adult with Moebius Syndrome, who has many, many accomplishments.
Aidan writes: "One of the things that was always instilled in me as a child was not to let my disability hold me back and I've pretty much stuck to this ever since, always relentless in obtaining or achieving a goal that I set for myself." Amen!
"...I began to talk about my face. When I began to perform, I became part of a community of performers with disabilities. Slowly I stopped pretending to be normal and began to accept myself the way I was...We do not try to change people by having them conform to an ideal. We try to accept people as they are. We adjust our beliefs and practices to conform to the reality of being human."--David Roche, THE CHURCH OF 80% SINCERITY.
That's just it--we shouldn't let any part of us, what we have, who we are, hold us back. At the same time, we shouldn't be afraid to talk about it, to express ourselves, to discuss our successes, our frustrations, our difficulties. Sometimes in the past I think there have been those who worried that talking too much about Moebius Syndrome, or a facial difference, or any physical condition one might have, meant one would allow it to stop you, to woe-is-me thinking, to make it a crutch that explains why you haven't done something. But talking about it doesn't have to mean that at all. Rather, it can be part of what leads us to success.
Tuesday, August 10, 2010
Beginnings
So this is something that grew out of the recent Moebius Syndrome Conference, held just outside of Denver, Colorado July 30th to August 1st (if you didn't know there was such a thing, you can read more about it here). (And if you wonder what kind of people attend such a conference, go here.)
Anyway, there I attended a session on Moebius Syndrome and the Internet. And one thing stuck out to me: we really don't have a continuing blog, written by someone with Moebius Syndrome, which discusses the daily tasks of living with it, thinking about it, dealing with it, etc etc. So I thought--maybe this is something I could do.
Am I the absolute best person for the job? Maybe not. But I'm willing. I hope I'm able. I'm 48 years old. My wife Lisa has Moebius Syndrome, too. We both have jobs. We deal with the world. We deal with what we have. We have a beautiful son, who interestingly enough doesn't have Moebius Syndrome at all. He's happy, he's smart, and he smiles all the time...even though we can't. Here's more on what we're all about...
It's an interesting life, dealing with Moebius Syndrome, or any facial difference or facial paralysis. In my case, I can't smile. I was born with club feet. I can see out of both eyes, but only out of one at a time. I don't have full mouth or lip closure; it can be hard control one's saliva. One's speech is affected, one's sight is affected. So yes, it'a an interesting, sometimes difficult, sometimes frustrating, life...but also one full of wonder, and achievements, and success, and it's never boring. And there are more of us out there than many people think. People talk about diversity. You want diversity? We're an excellent example of it. But few know it. Well, here we are...and so for those with Moebius Syndrome or with facial difference, for parents of children with it, for family members connected to it, for anyone interested in it or interested in life, because this is life...dealing with things...here we go!
YES, MOEBIUS FOLKS HAVE NOTICED THIS:
From a report in today's msnbc.com health section:
"Rudeness, even if it’s not aimed at us, can derail a day. It can spoil a meal and ruin a good mood. It can hamstring creativity and hamper job performance. It makes us feel uncomfortable and conflicted: We don’t want to be involved, but we feel like we should be."
You should see how it feels when it IS aimed at you...
JOB HUNTING:
Are you looking for a job? As all of us with Moebius know, being one of us and getting hired isn't always the easiest thing; you never know how others will perceive a facial difference (although we all can and do find jobs, and good ones). In any case, a new study suggests you not drink any booze during your interview process--it makes things even tougher:
""Job applicants who drink alcohol are perceived as less intelligent and less hireable by American bosses, a bias dubbed the "imbibing idiot bias" in a study published on Monday. In a series of six related experiments, researchers from the University of Michigan and the University of Pennsylvania found that an association with alcohol caused observers to "expect cognitive impairment" in a job seeker. "Merely holding an alcoholic beverage may reduce the perceived intelligence of the person," Scott Rick and Maurice Schweitzer wrote."
FOR MOEBIUS MOMS AND DADS:
Whether you have a child with a facial difference or not, I'm sure you saw this news yesterday--and here's some good explanation of it:
"Puberty starting in the first and second grades? Yes — that’s the deeply concerning trend that pediatricians like me have seen over the past 20 years, and Pediatrics has just released a study confirming our worries. From 1997 to 2010, the percent of 7-year-old white girls in the U.S. with early breast development (the first sign of puberty) jumped from 5 percent to 10 percent; for black girls, the jump was from 15 percent to 23 percent; for Hispanic girls, the number now stands at 15 percent....So why is this news such a big deal? For one thing, early puberty is terribly hard on girls socially, emotionally, and even physically. Research shows that girls who start puberty early experience higher rates of troubled relationships. They get bullied and sexually harassed. And when third-grade girls look like sixth-grade girls, adults expect them to act older, which makes the girls feel crazy....The science community tells us that this phenomenon is probably related to “increased” nutrition — and, in fact, most of these young girls are overweight. Scientists also speculate that added hormones and other chemicals in foods may contribute. So what do we do? No parent wants his daughter menstruating in third grade. Since we believe that early puberty is probably related to being overweight, let’s take the bull by the horns and get serious about helping our kids keep their weight down."
Read the whole thing...
TODAY'S MOEBIUS MOMENT:
Actually it comes from yesterday. What's it like to deal with Moebius on a daily basis? Well--so I'm teaching my history courses right now, second summer session, it's hot, it's approaching the end of the session...and one of my classes begins at 7 a.m.
I dunno about you. But I'm not a great morning person anyway. And that early in the morning, having to deliver about a two-hour lecture? Ugh. In the morning my mouth is kind of dry. When I then have to talk a lot, my mouth creates for me extra saliva (I guess, anyway; sometimes I wish it didn't try to "help" me this way) to aid with the dryness. But when you don't have full lip closure, it's easy to lose control of that saliva...especially when, like me, I use Ice Breakers to protect against any gagging reflex. So it can all make for some challenges.
Know what I do? I try to surreptitiously wipe my mouth when nobody's looking closely...and push on. It gets better as the morning goes on. By the end of class I feel better and sound better. Keep going. Sometimes it seems like my mantra.
"I now talk about my face. I express my feelings about being disfigured. I share my voice...[this book] is the story of accepting yourself, in spite of all your flaws."--David Roche, THE CHURCH OF 80% SINCERITY. (find out more about this excellent book here.)
Anyway, there I attended a session on Moebius Syndrome and the Internet. And one thing stuck out to me: we really don't have a continuing blog, written by someone with Moebius Syndrome, which discusses the daily tasks of living with it, thinking about it, dealing with it, etc etc. So I thought--maybe this is something I could do.
Am I the absolute best person for the job? Maybe not. But I'm willing. I hope I'm able. I'm 48 years old. My wife Lisa has Moebius Syndrome, too. We both have jobs. We deal with the world. We deal with what we have. We have a beautiful son, who interestingly enough doesn't have Moebius Syndrome at all. He's happy, he's smart, and he smiles all the time...even though we can't. Here's more on what we're all about...
It's an interesting life, dealing with Moebius Syndrome, or any facial difference or facial paralysis. In my case, I can't smile. I was born with club feet. I can see out of both eyes, but only out of one at a time. I don't have full mouth or lip closure; it can be hard control one's saliva. One's speech is affected, one's sight is affected. So yes, it'a an interesting, sometimes difficult, sometimes frustrating, life...but also one full of wonder, and achievements, and success, and it's never boring. And there are more of us out there than many people think. People talk about diversity. You want diversity? We're an excellent example of it. But few know it. Well, here we are...and so for those with Moebius Syndrome or with facial difference, for parents of children with it, for family members connected to it, for anyone interested in it or interested in life, because this is life...dealing with things...here we go!
YES, MOEBIUS FOLKS HAVE NOTICED THIS:
From a report in today's msnbc.com health section:
"Rudeness, even if it’s not aimed at us, can derail a day. It can spoil a meal and ruin a good mood. It can hamstring creativity and hamper job performance. It makes us feel uncomfortable and conflicted: We don’t want to be involved, but we feel like we should be."
You should see how it feels when it IS aimed at you...
JOB HUNTING:
Are you looking for a job? As all of us with Moebius know, being one of us and getting hired isn't always the easiest thing; you never know how others will perceive a facial difference (although we all can and do find jobs, and good ones). In any case, a new study suggests you not drink any booze during your interview process--it makes things even tougher:
""Job applicants who drink alcohol are perceived as less intelligent and less hireable by American bosses, a bias dubbed the "imbibing idiot bias" in a study published on Monday. In a series of six related experiments, researchers from the University of Michigan and the University of Pennsylvania found that an association with alcohol caused observers to "expect cognitive impairment" in a job seeker. "Merely holding an alcoholic beverage may reduce the perceived intelligence of the person," Scott Rick and Maurice Schweitzer wrote."
FOR MOEBIUS MOMS AND DADS:
Whether you have a child with a facial difference or not, I'm sure you saw this news yesterday--and here's some good explanation of it:
"Puberty starting in the first and second grades? Yes — that’s the deeply concerning trend that pediatricians like me have seen over the past 20 years, and Pediatrics has just released a study confirming our worries. From 1997 to 2010, the percent of 7-year-old white girls in the U.S. with early breast development (the first sign of puberty) jumped from 5 percent to 10 percent; for black girls, the jump was from 15 percent to 23 percent; for Hispanic girls, the number now stands at 15 percent....So why is this news such a big deal? For one thing, early puberty is terribly hard on girls socially, emotionally, and even physically. Research shows that girls who start puberty early experience higher rates of troubled relationships. They get bullied and sexually harassed. And when third-grade girls look like sixth-grade girls, adults expect them to act older, which makes the girls feel crazy....The science community tells us that this phenomenon is probably related to “increased” nutrition — and, in fact, most of these young girls are overweight. Scientists also speculate that added hormones and other chemicals in foods may contribute. So what do we do? No parent wants his daughter menstruating in third grade. Since we believe that early puberty is probably related to being overweight, let’s take the bull by the horns and get serious about helping our kids keep their weight down."
Read the whole thing...
TODAY'S MOEBIUS MOMENT:
Actually it comes from yesterday. What's it like to deal with Moebius on a daily basis? Well--so I'm teaching my history courses right now, second summer session, it's hot, it's approaching the end of the session...and one of my classes begins at 7 a.m.
I dunno about you. But I'm not a great morning person anyway. And that early in the morning, having to deliver about a two-hour lecture? Ugh. In the morning my mouth is kind of dry. When I then have to talk a lot, my mouth creates for me extra saliva (I guess, anyway; sometimes I wish it didn't try to "help" me this way) to aid with the dryness. But when you don't have full lip closure, it's easy to lose control of that saliva...especially when, like me, I use Ice Breakers to protect against any gagging reflex. So it can all make for some challenges.
Know what I do? I try to surreptitiously wipe my mouth when nobody's looking closely...and push on. It gets better as the morning goes on. By the end of class I feel better and sound better. Keep going. Sometimes it seems like my mantra.
"I now talk about my face. I express my feelings about being disfigured. I share my voice...[this book] is the story of accepting yourself, in spite of all your flaws."--David Roche, THE CHURCH OF 80% SINCERITY. (find out more about this excellent book here.)
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