A QUICK STORY
I (along with the rest of the family) have been down with the flu for the last couple of days, and we're still a bit weak from it...but getting better...so today I'll just tell a quick story, in two parts:
First: teaching in the spring semester began again for me recently; we always begin again right after the Martin Luther King holiday. Once again, I did what I always do on day 1 of class---tell them about my Moebius Syndrome. It's always received well, and this time was no different for all 3 of my classes. I think one thing that helps it go so smoothly is that I try to use humor in describing Moebius. I try not to make it so serious and heavy. It helps to have a little fun with it. So for example, I always mention that we with Moebius often don't have full lip closure. There are certain sounds we're going to have difficulty making, especially the "m" and the "b" sound. But...naturally...our condition is called "Moebius" Syndrome..."Moebius" being a very difficult word for us to say. Thanks a lot, syndrome-namers!!
That always gets a laugh. We with Moebius have great senses of humor. It's good for people to know that.
And then this weekend, because I could tell I was coming down with something, and we thought it would be good to see a doctor and see if I could get some meds to attack it early, I went to an urgent care facility. They checked me out very well; in giving my medical history, naturally I described my Moebius Syndrome to the doctor and to the nurse practitioner. Unsurprisingly, they had never heard of Moebius. No shame there. Many have not. But what pleased me is that they were very interested in it and wanted to know more. And then the next day, when my wife had to go to the same facility and see if SHE had the flu too, obviously they had discussed it among themselves and knew more about it. That's the thing--many people, when you take the time to describe Moebius to them, are interested in it, want to know more, and react positively to it. I guess you would expect that when dealing with medical professionals...but I think ordinary people can have a good reaction, too.
So anyway, that's my Moebius Syndrome story for today. :+)
Monday, January 31, 2011
Friday, January 28, 2011
MOEBIUS SYNDROME IN THE NEWS
Our friend Elisa Schumacher Relyea--another Moebius hero:
"A MOTHER-of-two has never smiled because a rare condition means she cannot move her face.
Elisa Schumacher Relyea, 42, has Moebius Syndrome – congenital facial paralysis.
She has never been able to smile at her children, or even at her husband Tim, 44, on her wedding day.
Elisa, a public relations consultant from New York, had surgery at 16 to alter her face – including putting gold in her eyelids to help them shut. She joked: “I feel my face looks more positive now.
“I can win in any staring competition and I really wish I played poker because my poker face is incontestable!”
By the way, recently the New York Times in its science section ran a long article about scientific analyses of a smile--physically how it happens, what it means, etc etc etc.
Of course, what the piece did NOT do is consider the possibility of people who cannot smile---but who find other ways to do so, from within. Something to think about, NY Times!
Our friend Elisa Schumacher Relyea--another Moebius hero:
"A MOTHER-of-two has never smiled because a rare condition means she cannot move her face.
Elisa Schumacher Relyea, 42, has Moebius Syndrome – congenital facial paralysis.
She has never been able to smile at her children, or even at her husband Tim, 44, on her wedding day.
Elisa, a public relations consultant from New York, had surgery at 16 to alter her face – including putting gold in her eyelids to help them shut. She joked: “I feel my face looks more positive now.
“I can win in any staring competition and I really wish I played poker because my poker face is incontestable!”
By the way, recently the New York Times in its science section ran a long article about scientific analyses of a smile--physically how it happens, what it means, etc etc etc.
Of course, what the piece did NOT do is consider the possibility of people who cannot smile---but who find other ways to do so, from within. Something to think about, NY Times!
Thursday, January 27, 2011
THOSE AWKWARD SILENCES
So if you have Moebius Syndrome and you're conversing with people who maybe don't know you so well, one thing you can do is: hold up your end of the conversation. Why? Read on:
"Well, this is awkward. A Dutch psychologist may have uncovered exactly what it is that makes those disruptions in conversation so horribly uncomfortable: They elicit deep-seated, primal fears of social acceptance and belonging. "You could compare the dynamics of an interaction with dancing: Partners smoothly follow each others steps and know when to take over, in such a way that, in the end, one flowing dance appears," says Namkje Koudenburg, of the psychology department at the University of Groningen. "In our research we found that this conversational flow is very pleasant; it informs us that things are all right: We belong to the group and agree with one another,” she continues. “As such, conversational flow serves social needs. That is, the need to belong, the need for self-esteem and the need for social validation."....
"...People who experienced the awkward silence reported feeling “distressed, afraid, hurt, and rejected,” according to the paper published in the Journal of Experimental Social Psychology. "Even when people are not consciously aware that there is a silence, they immediately sense that there is something wrong," Koudenburg says. "Experiencing conversational flow is probably more than just detecting a silence. There may also be other ways in which a conversation is not as smooth as you would want it to be.” Koudenburg doesn’t recommend rushing to fill the awkward silences when they occur. Instead, she suggests trying to identify what brought it about – a disagreement? A controversial statement? – and remembering that everyone experiencing the disruption in conversation is feeling just as uncomfortable as you are."
So if you have Moebius Syndrome and you're conversing with people who maybe don't know you so well, one thing you can do is: hold up your end of the conversation. Why? Read on:
"Well, this is awkward. A Dutch psychologist may have uncovered exactly what it is that makes those disruptions in conversation so horribly uncomfortable: They elicit deep-seated, primal fears of social acceptance and belonging. "You could compare the dynamics of an interaction with dancing: Partners smoothly follow each others steps and know when to take over, in such a way that, in the end, one flowing dance appears," says Namkje Koudenburg, of the psychology department at the University of Groningen. "In our research we found that this conversational flow is very pleasant; it informs us that things are all right: We belong to the group and agree with one another,” she continues. “As such, conversational flow serves social needs. That is, the need to belong, the need for self-esteem and the need for social validation."....
"...People who experienced the awkward silence reported feeling “distressed, afraid, hurt, and rejected,” according to the paper published in the Journal of Experimental Social Psychology. "Even when people are not consciously aware that there is a silence, they immediately sense that there is something wrong," Koudenburg says. "Experiencing conversational flow is probably more than just detecting a silence. There may also be other ways in which a conversation is not as smooth as you would want it to be.” Koudenburg doesn’t recommend rushing to fill the awkward silences when they occur. Instead, she suggests trying to identify what brought it about – a disagreement? A controversial statement? – and remembering that everyone experiencing the disruption in conversation is feeling just as uncomfortable as you are."
Wednesday, January 26, 2011
BIG QUESTIONS
Asking yourself the right questions can change your life, argues this piece---and it makes sense. I include a couple of excellent queries:
"Is this what I want to be doing?
This very moment is, always, the only moment in which you can make changes. Knowing which changes are best for you comes, always, from assessing what you feel. Ask yourself many times every day if you like what you're doing. If the answer is no, start noticing what you'd prefer. Thus begins the revolution.
Why worry?
These two words, considered sincerely, can radically reconfigure the landscape of your mind. Worry rarely leads to positive action; it's just painful, useless fear about hypothetical events, which scuttles happiness rather than ensuring it. Some psychologists say that by focusing on gratitude, we can shut down the part of the brain that worries. It actually works!"
There's actually 20 different questions in the article, all of them thought-provoking; so read the whole thing.
One principle those of us with Moebius Syndrome will agree on in answering any question: life IS worth living, and can be glorious, no matter what kind of physical and facial difference we have.
"Everyone chases after happiness, not noticing that happiness is
right at their heels." -Bertolt Brecht
Asking yourself the right questions can change your life, argues this piece---and it makes sense. I include a couple of excellent queries:
"Is this what I want to be doing?
This very moment is, always, the only moment in which you can make changes. Knowing which changes are best for you comes, always, from assessing what you feel. Ask yourself many times every day if you like what you're doing. If the answer is no, start noticing what you'd prefer. Thus begins the revolution.
Why worry?
These two words, considered sincerely, can radically reconfigure the landscape of your mind. Worry rarely leads to positive action; it's just painful, useless fear about hypothetical events, which scuttles happiness rather than ensuring it. Some psychologists say that by focusing on gratitude, we can shut down the part of the brain that worries. It actually works!"
There's actually 20 different questions in the article, all of them thought-provoking; so read the whole thing.
One principle those of us with Moebius Syndrome will agree on in answering any question: life IS worth living, and can be glorious, no matter what kind of physical and facial difference we have.
"Everyone chases after happiness, not noticing that happiness is
right at their heels." -Bertolt Brecht
Tuesday, January 25, 2011
A TRIP INTO HISTORY
On this day-after-Moebius Syndrome Awareness Day, it's good to remember that many famous folks throughout history have had physical differences. Take the great pianist Chopin, for example:
"Frédéric François Chopin may have died in 1849, but he's still picking up credits for music in movies, such as the rebooted "Karate Kid" and "The Curious Case of Benjamin Button." And, even more surprising, doctors are still trying to diagnose his condition. Chopin, who had bad health throughout his life, had some kind of pulmonary illness that led to his death at age 39, and whatever that was is still up for debate. Was it cystic fibrosis? Tuberculosis? The world may never know, but doctors and music enthusiasts are still guessing. Now, two Spanish researchers are tackling a different side of Chopin's health: The strange behavior and visions he reportedly saw on several occasions. They report in the journal Medical Humanities that Chopin may have had temporal lobe epilepsy, a condition that hadn't yet been described in medical literature during the composer's lifetime. Dr. John Hughlings Jackson is credited with advancing the understanding of epilepsy and epileptic seizures in the 1870s.
It's therefore practically impossible for Chopin's doctors to have suspected epilepsy, but the hallucinations seem to fit that diagnosis, said Dr. Manuel Vazquez Caruncho, radiologist at the Complexo Hospitalario Xeral-Calde in Lugo, Spain, and lead author of the study."
MOEBIUS SYNDROME IN THE NEWS
More heroes---this time from Colorado:
"Toddler Chloe DeLisa first heard hurtful words about her partially paralyzed face this winter at the Burger King play area in Firestone. “One little boy said, ‘Don’t play with her. She looks funny,’” said her mother, Shaundelle DeLisa, 39. She and her husband, James, also 39, dread these inevitable exchanges and decided to schedule “smile surgery” for Chloe when she turns 5. Chloe, 2, suffers from a rare neurological subcondition of Moebius syndrome that makes the left side of the little girl’s face expressionless.....besides the blindness in her left eye, Chloe is deaf in her left ear and suffers moderate hearing loss in her right ear. She also struggles with weakness in her left leg and arm.
“I remember the day we got the letter from the state certifying her as deaf and blind, and all I could think of was a Helen Keller situation,” Shaundelle DeLisa said. “She was quite young. I was scared to death.”
With hearing aids, Chloe hears within the normal range. And she learned to crawl and walk, even though doctors doubted she would. Her condition still makes communicating tough, though.
She can’t use her left hand very well to communicate with American Sign Language. Without lip control, she cannot form letters such as “P,” “B” or “M.” “So, she calls me ‘Nanny’ instead of ‘Mommy,’” Shaundelle DeLisa said.
But the DeLisas’ biggest concern relates to the psychosocial impacts of showing the world a flat face — at least on the left side. Online, they read about others with the condition who experience poor self-esteem and even self-hatred. James DeLisa said he and his wife blamed themselves in the early days. Then they blamed each other for not keeping Chloe from scratching at her blind eye, a habit that could cause the kind of infection that would lead to removing it. Now, they just promise their daughter — the third of their four daughters, ages 17 years to 4 months — and themselves that they will do everything possible to do right by her.
That includes scheduling the smile surgery while at the same time loving her “as is.”
“If I could take it all away from her, I absolutely would,” Shaundelle DeLisa said. “But I can’t. So, for her, it has to be OK. To let her think for even a second that it’s not OK would be devastating to her.”
You guys are all heroes. Best of luck to the DeLisas!!
"Contentment is a pearl of great price, and whoever procures it at
the expense of ten thousand desires makes a wise and a happy
purchase." -John Balguy
On this day-after-Moebius Syndrome Awareness Day, it's good to remember that many famous folks throughout history have had physical differences. Take the great pianist Chopin, for example:
"Frédéric François Chopin may have died in 1849, but he's still picking up credits for music in movies, such as the rebooted "Karate Kid" and "The Curious Case of Benjamin Button." And, even more surprising, doctors are still trying to diagnose his condition. Chopin, who had bad health throughout his life, had some kind of pulmonary illness that led to his death at age 39, and whatever that was is still up for debate. Was it cystic fibrosis? Tuberculosis? The world may never know, but doctors and music enthusiasts are still guessing. Now, two Spanish researchers are tackling a different side of Chopin's health: The strange behavior and visions he reportedly saw on several occasions. They report in the journal Medical Humanities that Chopin may have had temporal lobe epilepsy, a condition that hadn't yet been described in medical literature during the composer's lifetime. Dr. John Hughlings Jackson is credited with advancing the understanding of epilepsy and epileptic seizures in the 1870s.
It's therefore practically impossible for Chopin's doctors to have suspected epilepsy, but the hallucinations seem to fit that diagnosis, said Dr. Manuel Vazquez Caruncho, radiologist at the Complexo Hospitalario Xeral-Calde in Lugo, Spain, and lead author of the study."
MOEBIUS SYNDROME IN THE NEWS
More heroes---this time from Colorado:
"Toddler Chloe DeLisa first heard hurtful words about her partially paralyzed face this winter at the Burger King play area in Firestone. “One little boy said, ‘Don’t play with her. She looks funny,’” said her mother, Shaundelle DeLisa, 39. She and her husband, James, also 39, dread these inevitable exchanges and decided to schedule “smile surgery” for Chloe when she turns 5. Chloe, 2, suffers from a rare neurological subcondition of Moebius syndrome that makes the left side of the little girl’s face expressionless.....besides the blindness in her left eye, Chloe is deaf in her left ear and suffers moderate hearing loss in her right ear. She also struggles with weakness in her left leg and arm.
“I remember the day we got the letter from the state certifying her as deaf and blind, and all I could think of was a Helen Keller situation,” Shaundelle DeLisa said. “She was quite young. I was scared to death.”
With hearing aids, Chloe hears within the normal range. And she learned to crawl and walk, even though doctors doubted she would. Her condition still makes communicating tough, though.
She can’t use her left hand very well to communicate with American Sign Language. Without lip control, she cannot form letters such as “P,” “B” or “M.” “So, she calls me ‘Nanny’ instead of ‘Mommy,’” Shaundelle DeLisa said.
But the DeLisas’ biggest concern relates to the psychosocial impacts of showing the world a flat face — at least on the left side. Online, they read about others with the condition who experience poor self-esteem and even self-hatred. James DeLisa said he and his wife blamed themselves in the early days. Then they blamed each other for not keeping Chloe from scratching at her blind eye, a habit that could cause the kind of infection that would lead to removing it. Now, they just promise their daughter — the third of their four daughters, ages 17 years to 4 months — and themselves that they will do everything possible to do right by her.
That includes scheduling the smile surgery while at the same time loving her “as is.”
“If I could take it all away from her, I absolutely would,” Shaundelle DeLisa said. “But I can’t. So, for her, it has to be OK. To let her think for even a second that it’s not OK would be devastating to her.”
You guys are all heroes. Best of luck to the DeLisas!!
"Contentment is a pearl of great price, and whoever procures it at
the expense of ten thousand desires makes a wise and a happy
purchase." -John Balguy
Monday, January 24, 2011
MOEBIUS SYNDROME IN THE NEWS
Because after all...today is Moebius Syndrome Awareness Day!
A young lady named Breanna will undergo smile surgery down under:
"BREANNA Hinchcliffe is a happy little girl, but you wouldn't know it. The 10-year-old was born with a rare condition that permanently paralyses her face. She cannot smile, frown or blink her eyes.
But today she will undergo special surgery to give her the chance to smile for the first time.
"We've waited 10 years for her first smile, it will just be beautiful," her mother Heidi said yesterday. "I think I'll cry."
Best of luck to the Hinchcliffe family!
And here's another article on our friend Kelsey Ferrill, from Canada:
"As a baby, Kelsey Ferrill didn’t cry. She had to be force fed with a bottle and doctors believed she was blind because her eyes were unable to follow light. “You knew something was wrong,” recalls her father Chris. “You just didn’t know what.” Finally, after a month or two of dedicated research by her pediatrician, Ferrill was diagnosed with Moebius syndrome, a rare neurological disorder that affects a person’s eye movement and ability to produce facial expressions among other things. Now 20, Ferrill looks back at her struggles to date, which include about 10 corrective surgeries and a general stigma attached to her disorder. “People think that because you look differently, you’re not all there. I think that’s a real misconception,” Ferrill said. Chris said research into Moebius syndrome is still in its “infancy,” but the disorder has done little to hinder his daughter’s hopes and dreams. “You tell her that, yes, you may have physical attributes that are a little bit different but so does everybody,” he said."
Great stuff...
And here's a story on another heroic young lady, also from Canada, named Cassie Curtis:
"By the time she was one, Cassie had undergone five operations. Since she couldn't swallow, she required a feeding tube and tracheostomy. A cleft palate at the back of her mouth was repaired and she had surgery on both hands. Except for a few day passes, she spent 18 months at the General hospital rotating between the neonatal unit, medical pediatric intensive care unit and pediatric unit. "She kept getting pneumonia, so I finally said to the doctor, 'We're going to lose her. Let me take her home with the ventilator. I know how to use it. I do it every day.' " Robbie said. After much advocating, she was able to take Cassie home to Bethune, 60 kilometres north of Regina, in July 2000. She believes Cassie was the second child to be home-ventilated in the Regina Qu'Appelle Health Region. Since then, the region has created a pediatric team to oversee homecare for home-ventilated children. "They have staff going into homes at night now," Robbie said. "Cassie has a home health aide who takes care of her in our home from 11 p.m. to 7 a.m." After surgery on her feet, Cassie learned to walk and no longer needs a wheelchair. She continues to be tube fed and is on a ventilator at night and for an hour during the day to expand her lungs. Despite her health issues, she excels at many activities including Wii games. "She recently started playing the drums even though she has one very small hand and only two normal digits between both hands," Robbie said. "She plays baseball and participates in most activities at school."
And an excellent column on Moebius by Michael Stalla, of the Tallahassee Democrat, is being distributed around the country:
"Many people with Moebius lead full lives — both personally and professionally. But facial expressions are important in social interaction, and other "normal" people may have difficulty recognizing the emotions of people with Moebius. A person with Moebius Syndrome who can't smile may appear unfriendly or disinterested in conversation. Because I have this disorder, today means a lot to me. A lot of what you have read above describes me — I have half a smile. I have one toe on my left foot and wear a leg brace to support my bone on that leg. I've had my eyes stabilized so they don't go cross-eyed. I've had a lot of corrective surgeries. These physical issues may scare people away. But the purpose of this day is to let people know we are just like you. I don't think of myself as being different. I think of myself as who I am — my normal self. So what would I ask of other people? Please, look beyond my different-looking smile and see what's on the inside."
Because after all...today is Moebius Syndrome Awareness Day!
A young lady named Breanna will undergo smile surgery down under:
"BREANNA Hinchcliffe is a happy little girl, but you wouldn't know it. The 10-year-old was born with a rare condition that permanently paralyses her face. She cannot smile, frown or blink her eyes.
But today she will undergo special surgery to give her the chance to smile for the first time.
"We've waited 10 years for her first smile, it will just be beautiful," her mother Heidi said yesterday. "I think I'll cry."
Best of luck to the Hinchcliffe family!
And here's another article on our friend Kelsey Ferrill, from Canada:
"As a baby, Kelsey Ferrill didn’t cry. She had to be force fed with a bottle and doctors believed she was blind because her eyes were unable to follow light. “You knew something was wrong,” recalls her father Chris. “You just didn’t know what.” Finally, after a month or two of dedicated research by her pediatrician, Ferrill was diagnosed with Moebius syndrome, a rare neurological disorder that affects a person’s eye movement and ability to produce facial expressions among other things. Now 20, Ferrill looks back at her struggles to date, which include about 10 corrective surgeries and a general stigma attached to her disorder. “People think that because you look differently, you’re not all there. I think that’s a real misconception,” Ferrill said. Chris said research into Moebius syndrome is still in its “infancy,” but the disorder has done little to hinder his daughter’s hopes and dreams. “You tell her that, yes, you may have physical attributes that are a little bit different but so does everybody,” he said."
Great stuff...
And here's a story on another heroic young lady, also from Canada, named Cassie Curtis:
"By the time she was one, Cassie had undergone five operations. Since she couldn't swallow, she required a feeding tube and tracheostomy. A cleft palate at the back of her mouth was repaired and she had surgery on both hands. Except for a few day passes, she spent 18 months at the General hospital rotating between the neonatal unit, medical pediatric intensive care unit and pediatric unit. "She kept getting pneumonia, so I finally said to the doctor, 'We're going to lose her. Let me take her home with the ventilator. I know how to use it. I do it every day.' " Robbie said. After much advocating, she was able to take Cassie home to Bethune, 60 kilometres north of Regina, in July 2000. She believes Cassie was the second child to be home-ventilated in the Regina Qu'Appelle Health Region. Since then, the region has created a pediatric team to oversee homecare for home-ventilated children. "They have staff going into homes at night now," Robbie said. "Cassie has a home health aide who takes care of her in our home from 11 p.m. to 7 a.m." After surgery on her feet, Cassie learned to walk and no longer needs a wheelchair. She continues to be tube fed and is on a ventilator at night and for an hour during the day to expand her lungs. Despite her health issues, she excels at many activities including Wii games. "She recently started playing the drums even though she has one very small hand and only two normal digits between both hands," Robbie said. "She plays baseball and participates in most activities at school."
And an excellent column on Moebius by Michael Stalla, of the Tallahassee Democrat, is being distributed around the country:
"Many people with Moebius lead full lives — both personally and professionally. But facial expressions are important in social interaction, and other "normal" people may have difficulty recognizing the emotions of people with Moebius. A person with Moebius Syndrome who can't smile may appear unfriendly or disinterested in conversation. Because I have this disorder, today means a lot to me. A lot of what you have read above describes me — I have half a smile. I have one toe on my left foot and wear a leg brace to support my bone on that leg. I've had my eyes stabilized so they don't go cross-eyed. I've had a lot of corrective surgeries. These physical issues may scare people away. But the purpose of this day is to let people know we are just like you. I don't think of myself as being different. I think of myself as who I am — my normal self. So what would I ask of other people? Please, look beyond my different-looking smile and see what's on the inside."
Friday, January 21, 2011
DON'T JUST STUDY, TAKE A TEST
I just thought this was interesting:
"Taking a test is not just a passive mechanism for assessing how much people know, according to new research. It actually helps people learn, and it works better than a number of other studying techniques. The research, published online Thursday in the journal Science, found that students who read a passage, then took a test asking them to recall what they had read, retained about 50 percent more of the information a week later than students who used two other methods"
It probably has to do with the need, on a test, to work harder and retrieving the material you've learned, thus making it more likely to stick with you...
BEWARE OF THE BIG BREAKFAST
Eating one won't necessarily help you lose weight, though for a time many believed it would:
"For years, dieters have been told that the way to lose weight was to start the day with a hearty breakfast. Eat more in the morning and you’ll burn more calories and consume less food later in the day, nutritionists have told us. But now a new study suggests that the only thing a big breakfast does is lard on more pounds. No matter how many calories are consumed in the morning, people eat the same size lunch and dinner — and that adds up to more total calories when the breakfast is big, according to the study, which was published in theNutrition Journal>'
MOEBIUS SYNDROME IN THE NEWS
There's good stuff going on across the pond in the UK--just look at what businesswoman Olivia Stefanino is up to:
"CHESTER businesswoman Olivia Stefanino is inviting companies and self-employed people across the country to join the Feel Great Friday! campaign – which she has launched in a bid to raise money for charity and improve the nation’s self-esteem. Olivia says the campaign is all about encouraging people to nominate a Friday on which they’ll waive their usual fees and charges – and instead ask clients and customers to donate to the participating organisation’s nominated charity. “Feel Great Friday is an idea I had to raise money for charity and help us all feel better about ourselves at the same time,” she said. “I’m dreaming big – but ultimately, I want to get professionals and organisations all around the world to take part. And encouragingly, even before the official launch, we’ve already been receiving messages of support, offers of help and people wanting to sign up to the idea. “Of course, it’s up to participants to decide how many Feel Great Fridays! they want to organise – whether it’s one a year or more often than that. Personally, I've decided to make the final Friday of each month into a Feel Great Friday! Every client who books a session with me at Olivia Confidential on the last Friday of each month will not be charged my usual fee – but instead I’ll be asking them to make a donation to my chosen charity, The Moebius Research Trust, which is a little known charity that’s working hard to find the cause of Moebius Syndrome, a condition that causes facial paralysis from birth – which means that those with the syndrome will never be able to smile.”
"If at first you don't succeed; you are running about average."
-M. H. Alderson
I just thought this was interesting:
"Taking a test is not just a passive mechanism for assessing how much people know, according to new research. It actually helps people learn, and it works better than a number of other studying techniques. The research, published online Thursday in the journal Science, found that students who read a passage, then took a test asking them to recall what they had read, retained about 50 percent more of the information a week later than students who used two other methods"
It probably has to do with the need, on a test, to work harder and retrieving the material you've learned, thus making it more likely to stick with you...
BEWARE OF THE BIG BREAKFAST
Eating one won't necessarily help you lose weight, though for a time many believed it would:
"For years, dieters have been told that the way to lose weight was to start the day with a hearty breakfast. Eat more in the morning and you’ll burn more calories and consume less food later in the day, nutritionists have told us. But now a new study suggests that the only thing a big breakfast does is lard on more pounds. No matter how many calories are consumed in the morning, people eat the same size lunch and dinner — and that adds up to more total calories when the breakfast is big, according to the study, which was published in the
MOEBIUS SYNDROME IN THE NEWS
There's good stuff going on across the pond in the UK--just look at what businesswoman Olivia Stefanino is up to:
"CHESTER businesswoman Olivia Stefanino is inviting companies and self-employed people across the country to join the Feel Great Friday! campaign – which she has launched in a bid to raise money for charity and improve the nation’s self-esteem. Olivia says the campaign is all about encouraging people to nominate a Friday on which they’ll waive their usual fees and charges – and instead ask clients and customers to donate to the participating organisation’s nominated charity. “Feel Great Friday is an idea I had to raise money for charity and help us all feel better about ourselves at the same time,” she said. “I’m dreaming big – but ultimately, I want to get professionals and organisations all around the world to take part. And encouragingly, even before the official launch, we’ve already been receiving messages of support, offers of help and people wanting to sign up to the idea. “Of course, it’s up to participants to decide how many Feel Great Fridays! they want to organise – whether it’s one a year or more often than that. Personally, I've decided to make the final Friday of each month into a Feel Great Friday! Every client who books a session with me at Olivia Confidential on the last Friday of each month will not be charged my usual fee – but instead I’ll be asking them to make a donation to my chosen charity, The Moebius Research Trust, which is a little known charity that’s working hard to find the cause of Moebius Syndrome, a condition that causes facial paralysis from birth – which means that those with the syndrome will never be able to smile.”
"If at first you don't succeed; you are running about average."
-M. H. Alderson
Thursday, January 20, 2011
MOTHERHOOD AND APPLE PIE
So there's been sort of a debate going on via the internet/blogosphere concerning parenting, and especially motherhood. It was inspired by a Wall Street Journal article in which its author praised Chinese "tiger moms" who "screams at her children if they do not get all A's, makes them learn musical instruments even if they have no interest or talent, will not let them go on playdates or sleepovers, and makes them do immense amounts of housework."
Obviously one has to set boundaries for his or her children, and at times you have to be strict. Maybe at times parents in America have been too lenient and have been focused too much on promoting self-esteem. Still....on this issue, I think I have to agree with this:
"Screaming at children over their grades, especially to the point of the child's tears, is child abuse, pure and simple. It's not funny and it's not good parenting. It is a crushing, scarring, disastrous experience for the child. It isn't the least bit funny. People who do it belong in prison, not lauded as supermoms.
Nor does it work. I never saw a child who could be tortured into doing better work in school. If such children exist, and maybe they do, they are far more to be pitied for the lifelong scars their confused mothers have inflicted than envied. Interestingly enough, I will add another caveat: I have never seen a wildly successful adult who got there because his mother made him cry over his grades. Men and women succeed because they find a field of endeavor that matches their interests and abilities. It's that simple. They then motivate themselves and achieve."
Can one imagine tiger-mom tactics working on a child who has Moebius Syndrome???? I can't.
BRAIN EXERCISES
Did you know that you can do brain workouts? For example:
"Attention is necessary in nearly all daily tasks. Good attention enables you to maintain concentration despite noise and distractions and to focus on several activities at once. We can improve our attention by simply changing our routines. Change your route to work or reorganize your desk -- both will force your brain to wake up from habits and pay attention again. As we age, our attention span can decrease, making us more susceptible to distraction and less efficient at multitasking. By combining activities like listening to an audio book with jogging or doing math in your head while you drive forces your brain to work at doing more in the same amount of time."
Read the whole thing...
The secret to success is constancy to purpose." -Benjamin Disraeli
So there's been sort of a debate going on via the internet/blogosphere concerning parenting, and especially motherhood. It was inspired by a Wall Street Journal article in which its author praised Chinese "tiger moms" who "screams at her children if they do not get all A's, makes them learn musical instruments even if they have no interest or talent, will not let them go on playdates or sleepovers, and makes them do immense amounts of housework."
Obviously one has to set boundaries for his or her children, and at times you have to be strict. Maybe at times parents in America have been too lenient and have been focused too much on promoting self-esteem. Still....on this issue, I think I have to agree with this:
"Screaming at children over their grades, especially to the point of the child's tears, is child abuse, pure and simple. It's not funny and it's not good parenting. It is a crushing, scarring, disastrous experience for the child. It isn't the least bit funny. People who do it belong in prison, not lauded as supermoms.
Nor does it work. I never saw a child who could be tortured into doing better work in school. If such children exist, and maybe they do, they are far more to be pitied for the lifelong scars their confused mothers have inflicted than envied. Interestingly enough, I will add another caveat: I have never seen a wildly successful adult who got there because his mother made him cry over his grades. Men and women succeed because they find a field of endeavor that matches their interests and abilities. It's that simple. They then motivate themselves and achieve."
Can one imagine tiger-mom tactics working on a child who has Moebius Syndrome???? I can't.
BRAIN EXERCISES
Did you know that you can do brain workouts? For example:
"Attention is necessary in nearly all daily tasks. Good attention enables you to maintain concentration despite noise and distractions and to focus on several activities at once. We can improve our attention by simply changing our routines. Change your route to work or reorganize your desk -- both will force your brain to wake up from habits and pay attention again. As we age, our attention span can decrease, making us more susceptible to distraction and less efficient at multitasking. By combining activities like listening to an audio book with jogging or doing math in your head while you drive forces your brain to work at doing more in the same amount of time."
Read the whole thing...
The secret to success is constancy to purpose." -Benjamin Disraeli
Wednesday, January 19, 2011
MOEBIUS SYNDROME AWARENESS DAY IS COMING UP
...on January 24th. And it's good to see that it is gaining some notice in the wider world. For example, here's some notice of it from a blog on the Indianapolis Examiner page:
"January 24th, I'm told by a parent, is the first-ever Moebius Syndrome Awareness Day. January 24 is a significant date in the history of Moebius Syndrome as it is the birth date of Professor Paul Julius Mobius, the neurologist who first diagnosed the disorder in 1888, and who was born on January 24th, 1853 .
The concept of the Moebius Syndrome Awareness Day was conceived by Donnie Downs, a board member of The Many Faces Of Moebius Syndrome website, whose son Caleb was born with the syndrome.
During the course of 2010 a cause page was started at www.causes.com/causes/453553 in support of a Moebius Syndrome Awareness day – to date it has attracted 4343 members, all in support of Moebius Syndrome awareness. The first ever Moebius Syndrome Awareness Day in 2011 will be supported by all three of the Moebius Syndrome organizations; The Moebius Syndrome Foundation www.moebiussyndrome.com; The Many Faces Of Moebius Syndrome www.manyfacesofmoebiussyndrome.com; and The Moebius Syndrome Research Trust www.moebiusresearchtrust.org."
WEIGHT-TRAINING AND THE BRAIN
It appears lifting weights can be helpful in stimulating and nourishing brain function:
"...older women who lifted weights performed significantly better on various tests of cognitive functioning than women who completed toning classes. Ms. Liu-Ambrose has also done brain scans of people who lifted weights to determine whether neurogenesis is occurring in their brains, and the results, still unpublished, are encouraging, she said. Just how resistance training initiates changes in cognition remains somewhat mysterious. Ms. Liu-Ambrose said that “we now know that resistance training has significant benefits on cardiovascular health” and reduces “cardiovascular risk factors,” which otherwise would raise “one’s risk of cognitive impairment.” She speculates that resistance training, by strengthening the heart, improves blood flow to the brain generally, which is associated with better cognitive function. Perhaps almost as important, she added, resistance training at first requires an upsurge in brain usage. You have to think about “proper form and learning the technique,” she said, “while there generally is less learning involved in aerobic training,” like running. The brain benefits from being used, so that, in a neat circle, resistance training may both demand and create additional brain circuitry. Imagine what someone like Einstein might have accomplished if he had occasionally gone to the gym."
GINGERLY REDUCING THAT MUSCLE PAIN
I know some of us in the Moebius community deal daily with muscle pain. You know what might be able to help a bit? Ginger:
"Scientists recruited 74 adults and had them do exercises meant to induce muscle pain and inflammation. Over 11 days, the subjects ate either two grams of ginger a day or a placebo. Ultimately, the ginger groups experienced roughly 25 percent reductions in exercise-induced muscle pain 24 hours after a workout. In a similar double-blind study, scientists compared what happened when subjects consumed either two grams of ginger or a placebo one day and then two days after exercise. The ginger appeared to have no effect shortly after ingestion. But it was associated with less soreness the following day, leading the researchers to conclude that ginger may help “attenuate the day-to-day progression of muscle pain.”
Now where did I put that phone number for the Chinese take-out place...
"Singleness of purpose is one of the chief essentials for success in
life, no matter what may be one's aim." -John D. Rockefeller
...on January 24th. And it's good to see that it is gaining some notice in the wider world. For example, here's some notice of it from a blog on the Indianapolis Examiner page:
"January 24th, I'm told by a parent, is the first-ever Moebius Syndrome Awareness Day. January 24 is a significant date in the history of Moebius Syndrome as it is the birth date of Professor Paul Julius Mobius, the neurologist who first diagnosed the disorder in 1888, and who was born on January 24th, 1853 .
The concept of the Moebius Syndrome Awareness Day was conceived by Donnie Downs, a board member of The Many Faces Of Moebius Syndrome website, whose son Caleb was born with the syndrome.
During the course of 2010 a cause page was started at www.causes.com/causes/453553 in support of a Moebius Syndrome Awareness day – to date it has attracted 4343 members, all in support of Moebius Syndrome awareness. The first ever Moebius Syndrome Awareness Day in 2011 will be supported by all three of the Moebius Syndrome organizations; The Moebius Syndrome Foundation www.moebiussyndrome.com; The Many Faces Of Moebius Syndrome www.manyfacesofmoebiussyndrome.com; and The Moebius Syndrome Research Trust www.moebiusresearchtrust.org."
WEIGHT-TRAINING AND THE BRAIN
It appears lifting weights can be helpful in stimulating and nourishing brain function:
"...older women who lifted weights performed significantly better on various tests of cognitive functioning than women who completed toning classes. Ms. Liu-Ambrose has also done brain scans of people who lifted weights to determine whether neurogenesis is occurring in their brains, and the results, still unpublished, are encouraging, she said. Just how resistance training initiates changes in cognition remains somewhat mysterious. Ms. Liu-Ambrose said that “we now know that resistance training has significant benefits on cardiovascular health” and reduces “cardiovascular risk factors,” which otherwise would raise “one’s risk of cognitive impairment.” She speculates that resistance training, by strengthening the heart, improves blood flow to the brain generally, which is associated with better cognitive function. Perhaps almost as important, she added, resistance training at first requires an upsurge in brain usage. You have to think about “proper form and learning the technique,” she said, “while there generally is less learning involved in aerobic training,” like running. The brain benefits from being used, so that, in a neat circle, resistance training may both demand and create additional brain circuitry. Imagine what someone like Einstein might have accomplished if he had occasionally gone to the gym."
GINGERLY REDUCING THAT MUSCLE PAIN
I know some of us in the Moebius community deal daily with muscle pain. You know what might be able to help a bit? Ginger:
"Scientists recruited 74 adults and had them do exercises meant to induce muscle pain and inflammation. Over 11 days, the subjects ate either two grams of ginger a day or a placebo. Ultimately, the ginger groups experienced roughly 25 percent reductions in exercise-induced muscle pain 24 hours after a workout. In a similar double-blind study, scientists compared what happened when subjects consumed either two grams of ginger or a placebo one day and then two days after exercise. The ginger appeared to have no effect shortly after ingestion. But it was associated with less soreness the following day, leading the researchers to conclude that ginger may help “attenuate the day-to-day progression of muscle pain.”
Now where did I put that phone number for the Chinese take-out place...
"Singleness of purpose is one of the chief essentials for success in
life, no matter what may be one's aim." -John D. Rockefeller
Tuesday, January 18, 2011
A GOOD MOVIE?
You know, the movie "The King's Speech" might just be a good movie for many of us to see; you parents of children with Moebius might want to take your child to see it, if they're old enough for a few adult situations (some profanity, mainly) appearing in the film. The film is about Britain's King George, who in a very complicated situation eventually becomes king of England during World War II. There's only one problem---ever since he was very young, this man (known as "Bertie" to his family) has had a very bad stutter. How will he be able to give speeches? How will he be able to inspire a nation in time of crisis? The film deals with this, as well as the king's long, difficult efforts to cope with his problem:
"For all his fear and anguish over his shortcomings, Bertie has tremendous inner strength — more strength than he realizes — because he values the right things. He knows that the British people need a strong leader to unite and inspire them, and when it becomes clear that there’s no one else to do it, he is determined to face up to his responsibilities and make himself into that leader. “You have such perseverance, Bertie,” says Logue (who has little use for his royal title), and he’s not just talking about speech therapy. When his brother finally abdicates and Bertie takes the throne as King George VI, he’s already come a long way. But after Britain declares war on Germany, he faces another hurdle, one that might look small to others but is huge for him: He has to give a live radio address to the nation.
It’s in this brilliantly filmed climactic sequence, when the king of England faces the microphone, that we truly grasp the real issue. Bertie’s need to find his voice wasn’t about himself. With Logue there to guide and encourage him, with his wife and children listening from a nearby room, with an anxious nation awaiting his words, we understand what Bertie has always understood: that a great man is one who lives his life for and with others. Sustained by family and friends, he can fight against his own weaknesses and give freely of himself to those who need him."
"It is not because things are difficult that we do not dare; it is
because we do not dare that they are difficult." -Seneca
You know, the movie "The King's Speech" might just be a good movie for many of us to see; you parents of children with Moebius might want to take your child to see it, if they're old enough for a few adult situations (some profanity, mainly) appearing in the film. The film is about Britain's King George, who in a very complicated situation eventually becomes king of England during World War II. There's only one problem---ever since he was very young, this man (known as "Bertie" to his family) has had a very bad stutter. How will he be able to give speeches? How will he be able to inspire a nation in time of crisis? The film deals with this, as well as the king's long, difficult efforts to cope with his problem:
"For all his fear and anguish over his shortcomings, Bertie has tremendous inner strength — more strength than he realizes — because he values the right things. He knows that the British people need a strong leader to unite and inspire them, and when it becomes clear that there’s no one else to do it, he is determined to face up to his responsibilities and make himself into that leader. “You have such perseverance, Bertie,” says Logue (who has little use for his royal title), and he’s not just talking about speech therapy. When his brother finally abdicates and Bertie takes the throne as King George VI, he’s already come a long way. But after Britain declares war on Germany, he faces another hurdle, one that might look small to others but is huge for him: He has to give a live radio address to the nation.
It’s in this brilliantly filmed climactic sequence, when the king of England faces the microphone, that we truly grasp the real issue. Bertie’s need to find his voice wasn’t about himself. With Logue there to guide and encourage him, with his wife and children listening from a nearby room, with an anxious nation awaiting his words, we understand what Bertie has always understood: that a great man is one who lives his life for and with others. Sustained by family and friends, he can fight against his own weaknesses and give freely of himself to those who need him."
"It is not because things are difficult that we do not dare; it is
because we do not dare that they are difficult." -Seneca
Friday, January 14, 2011
BRAIN TALK: THE LINK BETWEEN PHYSICAL AND MENTAL HURT
A very interesting piece today on cnn.com from Dr. Charles Raison. It all makes sense to me--see if it makes sense to you:
"...let's start with this example. Have you ever noticed that when you are in physical pain you are more likely to be down and irritable than at other times? Ever noticed that when you are stressed, down or anxious you are more likely to feel pains in your body than at other times? If not, count yourself either young, lucky or both. For the rest of us, our experiences go along with lots of data showing that physical pain increases the chances of feeling emotional pain, and vice versa. Said more formally, depression is a risk factor for aches and pains in the body, and aches and pains in the body are a risk factor for depression. Why should this be? Most of us think of the body and brain as very mysterious and complicated, which they are. But in other ways they do things in a very literal and clunky fashion, and the connection between physical and emotional pain is a great example of this. These seemingly very different types of pain overlap because they share the same brain areas. Studies show that exactly the same brain areas light up in the scanner when people are exposed to emotional pain as when they are exposed to physical pain. In particular there is a brain region called the anterior cingulated cortex, or ACC for short, which fires up whether you are snubbed by by other people or subjected to a physical pain....
So all this suggested a very ingenious experiment to researchers at UCLA. If physical pain and emotional pain share the same brain areas, maybe giving a painkiller would make people less sensitive to being rejected by other people. So the researchers randomized a group of people to receive either acetaminophen (brand name Tylenol) or a placebo pill. Neither the researchers nor the subjects knew who got what, but the people who got Tylenol began to report that they were less hurt by the way people treated them in their daily lives. And after 3 weeks of either Tylenol or placebo all the subjects played the “cyberball” game in the brain scanner, and lo and behold the people who had received Tylenol showed much less activation of the ACC in their brains. I’m not sure that the take-home message from all this is that we should be taking Tylenol to keep from getting our feelings hurt, but rather that science is beginning to show logical explanations for many features of our lives that have been previously mysterious, such as why my stomach hurts when I get stressed out."
Fascinating stuff. Read the whole thing...
"When every physical and mental resources is focused, one's power to
solve a problem multiplies tremendously." -Norman Vincent Peale
A very interesting piece today on cnn.com from Dr. Charles Raison. It all makes sense to me--see if it makes sense to you:
"...let's start with this example. Have you ever noticed that when you are in physical pain you are more likely to be down and irritable than at other times? Ever noticed that when you are stressed, down or anxious you are more likely to feel pains in your body than at other times? If not, count yourself either young, lucky or both. For the rest of us, our experiences go along with lots of data showing that physical pain increases the chances of feeling emotional pain, and vice versa. Said more formally, depression is a risk factor for aches and pains in the body, and aches and pains in the body are a risk factor for depression. Why should this be? Most of us think of the body and brain as very mysterious and complicated, which they are. But in other ways they do things in a very literal and clunky fashion, and the connection between physical and emotional pain is a great example of this. These seemingly very different types of pain overlap because they share the same brain areas. Studies show that exactly the same brain areas light up in the scanner when people are exposed to emotional pain as when they are exposed to physical pain. In particular there is a brain region called the anterior cingulated cortex, or ACC for short, which fires up whether you are snubbed by by other people or subjected to a physical pain....
So all this suggested a very ingenious experiment to researchers at UCLA. If physical pain and emotional pain share the same brain areas, maybe giving a painkiller would make people less sensitive to being rejected by other people. So the researchers randomized a group of people to receive either acetaminophen (brand name Tylenol) or a placebo pill. Neither the researchers nor the subjects knew who got what, but the people who got Tylenol began to report that they were less hurt by the way people treated them in their daily lives. And after 3 weeks of either Tylenol or placebo all the subjects played the “cyberball” game in the brain scanner, and lo and behold the people who had received Tylenol showed much less activation of the ACC in their brains. I’m not sure that the take-home message from all this is that we should be taking Tylenol to keep from getting our feelings hurt, but rather that science is beginning to show logical explanations for many features of our lives that have been previously mysterious, such as why my stomach hurts when I get stressed out."
Fascinating stuff. Read the whole thing...
"When every physical and mental resources is focused, one's power to
solve a problem multiplies tremendously." -Norman Vincent Peale
Thursday, January 13, 2011
THE IMPORTANCE OF GOOD MANNERS
I think this is really true:
"Perhaps the easiest thing we can do to improve the quality of our interactions with one another in 2011 is resolve to be more polite. Many small acts -- from not taking the last cup of coffee without starting a fresh pot to putting the toilet seat down -- can add up to a level of increased civility in our lives that, when recognized and mirrored by others, exponentially improves the quality of our days.
The underlying principle is quite simple, according to Diane Gottsman, nationally recognized etiquette professional and owner of The Protocol School of Texas: Being polite involves recognizing and acknowledging the needs of others. Sue Jacques, a Canadian etiquette consultant and blogger known as The Civility CEO, agrees. Both agree that being polite is about respect -- for ourselves and others. Jacques says, "It is a choice to exhibit our best selves in all circumstances." "The key," says Gottsman, "is to put others at ease while presenting oneself in a perfectly polished manner."
So what are some ways to accomplish this? The article goes on to say:
"We should listen 60 percent of the time and speak 40 percent," Gottsman says. To be a better listener: Make eye contact and pause to think before you respond. As Jacques says, "Communication is more than hitting the SEND button." Focus on the other person, nod your head, lean forward. Avoid looking at your watch, phone or the TV over the person's shoulder. "There is nothing wrong with making people think they're wonderful; listening sincerely to what others have to say is the single best way to do that," Gottsman says. Farley reminds us that conversation is not performance art. "We all have friends who love the spotlight so much that every conversation ultimately winds up being about them. You could be chatting about your trip down the Amazon and she'd interrupt with: 'Speaking of Amazon, I just ordered this new book yesterday ...' If that sounds like you, remember this: No matter how entertaining you think you are, if your stories run over five minutes, chances are your friends are not that entertained.... They're just being polite. Take a breath and don't hog the floor."
I think we with Moebius Syndrome and facial differences are good at this. We're good listeners. Maybe partly this is because some of us still tend to be shy, and listening is a way not to draw too much attention to ourselves (I sometimes see this in myself). But I think this also comes from the fact that we are good observers of people and of society; and that we know what it's like to be ignored...and we don't want to act that way to others.
"The hardest thing about being an outcast isn't the love you don't receive. It's the love you long to give that nobody wants. After a while, it backs up into your system like stagnant water and turns toxic, poisoning your spirit. When this happens, you don't have many choices available. You can become a bitter loner who goes through life being pissed off at the world; you can fester with rage until one day you murder your classmates. Or, you can find another outlet for your love, where it will be appreciated and maybe even returned."--Jodee Blanco, PLEASE STOP LAUGHING AT ME (Ms Blanco's school experiences led her to volunteer to work with special ed kids at that school).
I think this is really true:
"Perhaps the easiest thing we can do to improve the quality of our interactions with one another in 2011 is resolve to be more polite. Many small acts -- from not taking the last cup of coffee without starting a fresh pot to putting the toilet seat down -- can add up to a level of increased civility in our lives that, when recognized and mirrored by others, exponentially improves the quality of our days.
The underlying principle is quite simple, according to Diane Gottsman, nationally recognized etiquette professional and owner of The Protocol School of Texas: Being polite involves recognizing and acknowledging the needs of others. Sue Jacques, a Canadian etiquette consultant and blogger known as The Civility CEO, agrees. Both agree that being polite is about respect -- for ourselves and others. Jacques says, "It is a choice to exhibit our best selves in all circumstances." "The key," says Gottsman, "is to put others at ease while presenting oneself in a perfectly polished manner."
So what are some ways to accomplish this? The article goes on to say:
"We should listen 60 percent of the time and speak 40 percent," Gottsman says. To be a better listener: Make eye contact and pause to think before you respond. As Jacques says, "Communication is more than hitting the SEND button." Focus on the other person, nod your head, lean forward. Avoid looking at your watch, phone or the TV over the person's shoulder. "There is nothing wrong with making people think they're wonderful; listening sincerely to what others have to say is the single best way to do that," Gottsman says. Farley reminds us that conversation is not performance art. "We all have friends who love the spotlight so much that every conversation ultimately winds up being about them. You could be chatting about your trip down the Amazon and she'd interrupt with: 'Speaking of Amazon, I just ordered this new book yesterday ...' If that sounds like you, remember this: No matter how entertaining you think you are, if your stories run over five minutes, chances are your friends are not that entertained.... They're just being polite. Take a breath and don't hog the floor."
I think we with Moebius Syndrome and facial differences are good at this. We're good listeners. Maybe partly this is because some of us still tend to be shy, and listening is a way not to draw too much attention to ourselves (I sometimes see this in myself). But I think this also comes from the fact that we are good observers of people and of society; and that we know what it's like to be ignored...and we don't want to act that way to others.
"The hardest thing about being an outcast isn't the love you don't receive. It's the love you long to give that nobody wants. After a while, it backs up into your system like stagnant water and turns toxic, poisoning your spirit. When this happens, you don't have many choices available. You can become a bitter loner who goes through life being pissed off at the world; you can fester with rage until one day you murder your classmates. Or, you can find another outlet for your love, where it will be appreciated and maybe even returned."--Jodee Blanco, PLEASE STOP LAUGHING AT ME (Ms Blanco's school experiences led her to volunteer to work with special ed kids at that school).
Wednesday, January 12, 2011
A QUOTE ON BEAUTY
This comes from a very interesting book I'm reading these days, by Anne LaMott, titled "Grace (Eventually): Thoughts on Faith." She writes:
"This culture's pursuit of beauty is a crazy, sick, losing game, for women, men, teenagers, and with the need to increase advertising revenues, now for pre-adolescents, too. We're starting to see more and more anorexic eight- and nine-year-olds. It's a game we cannot win. Every time we agree to play another round, and step on to the court to try again, we've already lost. The only way to win is to stay off the court. No matter how much of our time is spent in pursuit of physical beauty, even to great success, the Mirror on the Wall will always say, "Snow White lives," and this is in fact a lie--Snow White is in fact a fairy tale. Lies cannot nourish or protect you. Only freedom from fear, freedom from lies, can make us beautiful, and keep us safe...Of course, some days go better than others. Let's start with something easy: To step into beauty, does one have to give up on losing a little weight? No, of course not. Only if you're sick of suffering. Because if you cannot see that you're okay now, you won't be able to see it if you lose twenty pounds. It's an inside job."
And, for your amusement:
"Syzygy, inexorable, pancreatic, phantasmagoria --- anyone who can
use those four words in one sentence will never have to do manual
labor." -W.P. Kinsella
This comes from a very interesting book I'm reading these days, by Anne LaMott, titled "Grace (Eventually): Thoughts on Faith." She writes:
"This culture's pursuit of beauty is a crazy, sick, losing game, for women, men, teenagers, and with the need to increase advertising revenues, now for pre-adolescents, too. We're starting to see more and more anorexic eight- and nine-year-olds. It's a game we cannot win. Every time we agree to play another round, and step on to the court to try again, we've already lost. The only way to win is to stay off the court. No matter how much of our time is spent in pursuit of physical beauty, even to great success, the Mirror on the Wall will always say, "Snow White lives," and this is in fact a lie--Snow White is in fact a fairy tale. Lies cannot nourish or protect you. Only freedom from fear, freedom from lies, can make us beautiful, and keep us safe...Of course, some days go better than others. Let's start with something easy: To step into beauty, does one have to give up on losing a little weight? No, of course not. Only if you're sick of suffering. Because if you cannot see that you're okay now, you won't be able to see it if you lose twenty pounds. It's an inside job."
And, for your amusement:
"Syzygy, inexorable, pancreatic, phantasmagoria --- anyone who can
use those four words in one sentence will never have to do manual
labor." -W.P. Kinsella
Tuesday, January 11, 2011
A DISCUSSION OF INNER BEAUTY
It occurred in Pittsburgh last night, arising from that important series in the Pittsburgh Post-Gazette of a few months ago on facial difference, prominently discussing Moebius Syndrome, and involving of course our own Kathleen Bogart and David Roche:
"I believe in the dignity of labor, whether with head or hand; that
the world owes no man a living but that it owes every man an
opportunity to make a living." -John D. Rockefeller
It occurred in Pittsburgh last night, arising from that important series in the Pittsburgh Post-Gazette of a few months ago on facial difference, prominently discussing Moebius Syndrome, and involving of course our own Kathleen Bogart and David Roche:
One of the people attending Monday night's forum at the Heinz History Center asked the panelists how they learned to live with faces that were disfigured or so different from what most people would consider normal. Kathleen Bogart's answer was simple: "By talking about it." More than 200 people gathered to engage in the discussion, sponsored by the Pittsburgh Post-Gazette and spurred by staff writer Mark Roth's special series "About Faces."
Ms. Bogart, a graduate student in psychology at Tufts University, was born with Moebius syndrome, which has paralyzed most of her facial muscles.
"As a child, I didn't really want to think about it or talk, even to myself, about my condition," she said. "Then I learned more about it and studied it. I think that's a good way to start your acceptance process. And then talking to other people about it. Someone close to you. It can be refreshing to talk about how other people perceive you." Other members of the panel included Peter Townsend, who was born with neurofibromatosis, which produces bumps all over his face and body; David Roche, who was born with a disfigurement on one side of his face; Connie Culp, who was shot in the face by her husband and became the recipient of the nation's first face transplant; and Joseph Losee, a plastic surgeon who specialized in facial reconstruction and leads UPMC's newly approved face transplant program.
The 90-minute program, with Post-Gazette executive editor David Shribman serving as moderator, proved to be thought-provoking and upbeat. The panelists stressed how important having a sense of humor was and used laughter to make a number of their points.
"I've learned my face is an incredible gift," said Mr. Roche, who has made his experiences work for him as an author and public speaker. "Not the kind of gift I was excited about, but it's a gift because I've been forced to find my inner beauty. "And I've learned that my experiences are universal experiences. Everybody feels disfigured, whether it's on the inside or the outside. When you step out of the shower in the morning and look at yourself in the mirror, you know what I'm talking about."
Read the whole thing. I especially liked what one of the audience members had to say:
"They're courageous people," said Ms. Cupini, an occupational therapist. "They prove that whatever problems you think you have, you really don't.""I believe in the dignity of labor, whether with head or hand; that
the world owes no man a living but that it owes every man an
opportunity to make a living." -John D. Rockefeller
Monday, January 10, 2011
TUNES AND YOUR BRAIN
So why is music so enjoyable for us? Again--your brain knows:
So why is music so enjoyable for us? Again--your brain knows:
"Whether it's the Beatles or Beethoven, people like music for the same reason they like eating or having sex: It makes the brain release a chemical that gives pleasure, a new study says. The brain substance is involved both in anticipating a particularly thrilling musical moment and in feeling the rush from it, researchers found. Previous work had already suggested a role for dopamine, a substance brain cells release to communicate with each other. But the new work, which scanned people's brains as they listened to music, shows it happening directly."
As I always say, we with Moebius Syndrome aren't surprised at anything we find out about the brain...
HOW TO NAIL THAT BIG JOB INTERVIEW
Many of us with Moebius Syndrome and facial difference worry about this and have to think about this, whenever we seek employment or want to seek a new (and better!) job. (And don't be afraid to seek something new and better!) So how can we be a hit at the big job interview? There are lots of good tips here---and here is one of them:
Present yourself as the solution to a problem, says Charles Purdy, senior editor of Monster+Hot Jobs. "Employers create jobs and fill jobs because they have problems to solve. It's up to you to analyze what those problems are by analyzing the job ad or by just using what you know about the company or the industry and present yourself as someone who is ready and equipped to solve the problems that the open job indicates."
Say and do something positive that will help the situation; it
doesn't take any brains to complain." -Robert A. Cook
doesn't take any brains to complain." -Robert A. Cook
Friday, January 7, 2011
ANGEL FACES
This is awesome:
"Recently, twenty one carefully selected girls arrived from the United States, Canada and Mexico with challenges even greater than we had anticipated. At least half of the girls had burn injuries of over 60%, a few with 90% of their body surface, arrived with significant lack of mobility and trauma that brought those injuries (nearly too heartbreaking to share). I’ve learned over the last decade of working with these courageous young women, the exterior injuries are only the tip of the iceberg. Social, familial and grief/loss issues are usually floating near the surface — hungry for solid education and tender loving care. This particular retreat was the most powerful in the connection we see with the girls. The compassion, love and support each girl showed toward each other (90% of girls did not know each other when they arrived) is something we usually don't see until the third day. It was clear to me on the morning after their arrival — they were bonded together."
Read the whole thing...
"I turned to my safest companion, my journal. It was the only place where I could honestly express how I felt without the fear of being judged by people whom I no longer trusted. Writing saved me from being swallowed by sorrow. I discovered solace in composing poems. The language of poetry gave me a way to transform my hurt and wrath into symbols and images that I could control. When my classmates snickered at me or whispered unkind names behind my back in study hall, I closed myself off from them by writing a poem and immersing myself in the soothing sound of the pen darting across the page."--Jodee Blanco, PLEASE STOP LAUGHING AT ME.
This is awesome:
"Recently, twenty one carefully selected girls arrived from the United States, Canada and Mexico with challenges even greater than we had anticipated. At least half of the girls had burn injuries of over 60%, a few with 90% of their body surface, arrived with significant lack of mobility and trauma that brought those injuries (nearly too heartbreaking to share). I’ve learned over the last decade of working with these courageous young women, the exterior injuries are only the tip of the iceberg. Social, familial and grief/loss issues are usually floating near the surface — hungry for solid education and tender loving care. This particular retreat was the most powerful in the connection we see with the girls. The compassion, love and support each girl showed toward each other (90% of girls did not know each other when they arrived) is something we usually don't see until the third day. It was clear to me on the morning after their arrival — they were bonded together."
Read the whole thing...
"I turned to my safest companion, my journal. It was the only place where I could honestly express how I felt without the fear of being judged by people whom I no longer trusted. Writing saved me from being swallowed by sorrow. I discovered solace in composing poems. The language of poetry gave me a way to transform my hurt and wrath into symbols and images that I could control. When my classmates snickered at me or whispered unkind names behind my back in study hall, I closed myself off from them by writing a poem and immersing myself in the soothing sound of the pen darting across the page."--Jodee Blanco, PLEASE STOP LAUGHING AT ME.
Thursday, January 6, 2011
WATCH YOUR BODY LANGUAGE
It can tell a lot about you--and send others clues as to what you're really thinking:
"Every last gesture -- whether it's a tilt of the head or plain fidgeting -- tells a story. Do you look down when you speak? Play with your hair? Lean to one side? Learn what you're telling others with your body language -- and what others are telling you with theirs....
• Nodding your headIf you nod in clusters of three, the speaker will sense your interest, and this can lengthen her response threefold, says Goman. Word to the wise: Nod only once when trying to escape Chatty Cathy.
• Closing your eyesBy rubbing, covering, or closing your eyes for longer than a blink, you're trying to keep out certain auditory or visual cues. It's a survival mechanism to prevent the brain from processing anything undesirable or threatening.
• Lowering your gazeThis meek gesture is an unconscious bid for public support -- a favorite tactic of small children, not to mention the late Princess Diana. It often elicits a parental response. If someone does it to you, she may be searching for your empathy. Be gentle."
Read the whole thing...
"Unless commitment is made, there are only promises and hopes; but
no plans." -Peter F. Drucker
It can tell a lot about you--and send others clues as to what you're really thinking:
"Every last gesture -- whether it's a tilt of the head or plain fidgeting -- tells a story. Do you look down when you speak? Play with your hair? Lean to one side? Learn what you're telling others with your body language -- and what others are telling you with theirs....
• Nodding your headIf you nod in clusters of three, the speaker will sense your interest, and this can lengthen her response threefold, says Goman. Word to the wise: Nod only once when trying to escape Chatty Cathy.
• Closing your eyesBy rubbing, covering, or closing your eyes for longer than a blink, you're trying to keep out certain auditory or visual cues. It's a survival mechanism to prevent the brain from processing anything undesirable or threatening.
• Lowering your gazeThis meek gesture is an unconscious bid for public support -- a favorite tactic of small children, not to mention the late Princess Diana. It often elicits a parental response. If someone does it to you, she may be searching for your empathy. Be gentle."
Read the whole thing...
"Unless commitment is made, there are only promises and hopes; but
no plans." -Peter F. Drucker
Wednesday, January 5, 2011
EXERCISE NEWS
Get out there and walk...and make it a good one, which is appropriate for you and a good workout:
which you must see the world." -George Bernard Shaw
Get out there and walk...and make it a good one, which is appropriate for you and a good workout:
Doctors who are interested in measuring life expectancy may now have a simple way to do it — researchers have discovered that walking speed can be a useful predictor of how long older adults live. Those who walked 1 meter per second (about 2.25 mph) or faster consistently lived longer than others of their age and sex who walked more slowly, the study showed. "We're able to show that a person's capacity to move strongly reflects vitality and health," said study researcher Dr. Stephanie Studenski, a professor of medicine at the University of Pittsburgh. However, the researchers also emphasized that the purpose of this study wasn't to get people to walk faster in hopes of living longer."Your body chooses the walking speed that is best for you, and that is your speed, your health indicator," Studenski said. "And that's what it really is: an indicator. Going out and walking faster does not necessarily mean you will suddenly live longer. You still need to address the underlying health issues."
Whether it's a squeeze of the hand, a big bear hug, a kneading massage, even a bedroom romp, touch is shaping up to be the ultimate mind-body medicine. From lowering blood pressure and heart rate to increasing immune function and relieving pain, getting touched or doing some touching makes you healthier -- not to mention happier and less anxious."
Read the whole thing.
"Cinnamon is one of the signature spices of winter, warming the senses and marking the season's festivities with its familiar aroma. One of the oldest spices known to us, cinnamon has been coveted as a medicine, flavoring, embalming agent and preservative. So common to households today, it was once quite rare, much sought-after and almost worth its weight in gold. Cinnamon comes from the brown inner bark of several trees from the genus Cinnamomum in the laurel family. Several species are sold as cinnamon, but Ceylon, or "true cinnamon," and Cassia (also called Chinese and Saigon cinnamon) are the most common. They are available as dried tubular sticks (quills) or ground powder. The oils in the bark contain cinnamaldehyde, among other substances that give cinnamon its antimicrobial and anti-inflammatory properties. Just 2 teaspoons of cinnamon provide 44 percent Daily Value (based on a 2,000-calorie diet) for manganese, which helps the body maintain normal blood sugar levels and strong bones, and almost 10 percent DV of dietary fiber."
"Better keep yourself clean and bright; you are the window through
which you must see the world." -George Bernard Shaw
Tuesday, January 4, 2011
BRAIN TALK
People with Moebius are always interested in new brain research. So...are you finding it difficult to keep those healthy New Year's resolutions? Is it hard to break those old habits? Your brain has something to do with that...but there are ways to do better:
People with Moebius are always interested in new brain research. So...are you finding it difficult to keep those healthy New Year's resolutions? Is it hard to break those old habits? Your brain has something to do with that...but there are ways to do better:
The new year's just begun, and already you're finding it hard to keep those resolutions to junk the junk food, get off the couch or kick smoking. There's a biological reason a lot of our bad habits are so hard to break -- they get wired into our brains.
That's not an excuse to give up. Understanding how unhealthy behaviors become ingrained has scientists learning some tricks that may help good habits replace the bad. "Why are bad habits stronger? You're fighting against the power of an immediate reward," said Dr. Nora Volkow, director of the National Institute on Drug Abuse and an authority on the brain's pleasure pathway.
It's the fudge vs. broccoli choice: Chocolate's yum factor tends to beat out the knowledge that sticking with veggies can bring an eventual reward of lost pounds. Just how that bit of happiness turns into a habit involves dopamine, a pleasure-sensing chemical. It conditions the brain to want that reward again and again, especially when it gets the right cue from your environment. Always snack in front of your favorite TV show? The striatum, a dopamine-rich part of the brain, memorizes rituals and routines that are linked to getting a particular reward, Volkow said. Eventually, those environmental cues trigger the striatum to make some behaviors almost automatic.
Researchers suggest steps that may help counter your brain's hold on bad habits: Repeat the new behavior -- the same routine at the same time of day. Resolved to exercise? Doing it at the same time of the morning, rather than fitting it in haphazardly, makes the striatum recognize the habit, so eventually, "if you don't do it, you feel awful," Volkow said."
"The object of a new year is not that we should have a new year. It
is that we should have a new soul." -G.K. Chesterton
is that we should have a new soul." -G.K. Chesterton
Monday, January 3, 2011
WORDS TO BANISH IN 2011
Some say certain trendy words have become over-used. I'd have to agree:
"Viral" leads this year's list of "banished words" from a Michigan university seeking an antidote to over-used expressions. The word -- often used to describe popular one-hit wonders on YouTube -- garnered numerous nominations for the annual list, released byLake Superior State University on Friday.
"This linguistic disease of a term must be quarantined," wrote Kuahmel Allah of Los Angeles wrote in nominating "viral" on the university's website. The university says it receives more than 1,000 submissions each year on its website for the playful list, which a public relations official created in 1976 to draw more attention to the school. "Viral" wasn't the only digital-age term in the cross-hairs of linguistic sticklers this year. "Fail" and "BFF" made the 2011 list, which also included a proposal to ban using Facebook and Google as verbs."
Now, here's more from Jodee Blanco, and her book PLEASE STOP LAUGHING AT ME:
"...I'm going to share with you a story about an underdog--someone who everyone made fun of, someone who never got invited to parties, and who was so lonely, she felt lost. This girl had wild, wiry hair that never looked as if it was combed. She wasn't like the other kids at school. She would rather write poems and make up songs than hang out and talk about boys. She ached to have friends, but wasn't interested in the same things as her peers. They thought she was weird. They disliked the way she dressed. They didn't understand why she was different, and they chose not to try. Rather than opening their hearts to this strange, beautiful bird, she was cast out from the flock. She didn't fit in. As the years passed and the rejection she endured in school became buried in a secret place in her memory, she discovered she had a gift for turning those songs she used to hear inside her head into music that reached people's souls. Millions of people...That misfit who everyone picked on, who was the butt of every joke and the target of so much cruelty, was Janis Joplin. You all know her music. It helped define a generation. Your children will listen to Janis Joplin, just as your parents did, and as I bet many of you do, too. Janis Joplin died in her twenties from a drug overdose. She was so full of pain and hurt that she tried to numb it with drugs. Eventually, they killed her. I'll always wonder: if the kids in her school had tried to get to know her, and instead of ridiculing and shunning her for being different, had embraced her for being special, would she still be alive today? We'll never know. But one thing we do know for sure. There are people just like Janis Joplin among us now."
So true!
Some say certain trendy words have become over-used. I'd have to agree:
"Viral" leads this year's list of "banished words" from a Michigan university seeking an antidote to over-used expressions. The word -- often used to describe popular one-hit wonders on YouTube -- garnered numerous nominations for the annual list, released byLake Superior State University on Friday.
"This linguistic disease of a term must be quarantined," wrote Kuahmel Allah of Los Angeles wrote in nominating "viral" on the university's website. The university says it receives more than 1,000 submissions each year on its website for the playful list, which a public relations official created in 1976 to draw more attention to the school. "Viral" wasn't the only digital-age term in the cross-hairs of linguistic sticklers this year. "Fail" and "BFF" made the 2011 list, which also included a proposal to ban using Facebook and Google as verbs."
Now, here's more from Jodee Blanco, and her book PLEASE STOP LAUGHING AT ME:
"...I'm going to share with you a story about an underdog--someone who everyone made fun of, someone who never got invited to parties, and who was so lonely, she felt lost. This girl had wild, wiry hair that never looked as if it was combed. She wasn't like the other kids at school. She would rather write poems and make up songs than hang out and talk about boys. She ached to have friends, but wasn't interested in the same things as her peers. They thought she was weird. They disliked the way she dressed. They didn't understand why she was different, and they chose not to try. Rather than opening their hearts to this strange, beautiful bird, she was cast out from the flock. She didn't fit in. As the years passed and the rejection she endured in school became buried in a secret place in her memory, she discovered she had a gift for turning those songs she used to hear inside her head into music that reached people's souls. Millions of people...That misfit who everyone picked on, who was the butt of every joke and the target of so much cruelty, was Janis Joplin. You all know her music. It helped define a generation. Your children will listen to Janis Joplin, just as your parents did, and as I bet many of you do, too. Janis Joplin died in her twenties from a drug overdose. She was so full of pain and hurt that she tried to numb it with drugs. Eventually, they killed her. I'll always wonder: if the kids in her school had tried to get to know her, and instead of ridiculing and shunning her for being different, had embraced her for being special, would she still be alive today? We'll never know. But one thing we do know for sure. There are people just like Janis Joplin among us now."
So true!
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