Wednesday, April 22, 2015

ADVICE FOR MOEBIUS PARENTS AND OTHERS

Today, I've adapted a couple of advice columns that I thought those in our community would find helpful.

First:  do you feel overwhelmed?:

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How do I stop feeling so . . . small? I feel like I’m failing some “grown-up” test, overwhelmed with the children, aging parents, sick husband, workplace stress (I think I work with a bully), too little money, too many wants, and just fatigue.
Did our parents feel like this and I just didn’t get the memo that adulthood is this hard? Am I solely responsible for making my life different? Where do I start that?
I have this thought that I am supposed to stop bailing water long enough to find the leak, but I also think I might take the ship down if I slow down enough for that. And then I talk to other moms, wives, friends, and they have time to do things like watch TV, which sounds really blissful right now.
Well, I guess I found the time to get here, so life isn’t that draconian. But I’m finding it hard to move right now.
Feeling Small and Trapped
Caregiving on three fronts while also holding down a job is legitimately exhausting and scary.
Relief is out there: If your husband has a serious or chronic illness, chances are there’s a support group and possibly respite care. There are also services available on the “aging parents” front, via Eldercare.gov . If your kids are still young enough to need constant supervision, a mother’s helper in the form of a teenage neighbor who comes over an evening or two a week, for not much money, can be worth every scarce penny.
I know you’re looking for bigger answers here, and I have some: We’re all small, in the scheme of things. And, yes, our parents felt like this sometimes, though what overwhelmed them and how they sought relief were probably different. History and the present never want for examples of human hardship.
And joy, pushing up through the cracks.
Sometimes all any of us can do is keep taking small steps, small steps, small steps to get us through whatever (dirt) storm has parked itself over our heads, and accept relief where we can find it. We do get through, though — nothing you describe is permanent.

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Second:  what if you are overwhelmed...with grief?:

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Six months ago, a good friend died of cancer. Four months ago, my beloved dog died. One month ago, another good friend died of cancer. Four weeks ago, our beloved rescued-from-a-puppy-mill 3-year-old dog died from cancer. Two weeks ago, a much-loved close relative tried to commit suicide. One week ago, I found out I’m being laid off from a job I love and have been very good at for 16 years. I’m 60 years old, and the thought of looking for another job fills me with dread.
Yesterday, we had to have another elderly dog put down. I’m feeling overwhelmed.
I know these things happen to everyone. I tell myself that I’ve got a good life — we can live on my husband’s salary, our house is paid for, we have enough to eat, we won’t be destitute or even suffer much from the loss of my salary. My husband is wonderful and very supportive. But I can’t logic myself out of my grief.
How do you tell when grief becomes just feeling sorry for yourself? A week for a dog, a month for a friend, a couple of months for your career? How do you make it go away?
Grieving
I’m so sorry. That is a staggering number of losses in a short period of time. Of course you’re reeling.
You don’t “make” grief “go away,” though. In my experience, at least, it doesn’t work that way — and the idea of a set time to feel bad (and its companion idea, that there’s a time past which you aren’t supposed to feel bad) is anathema to grief.
It’s more like weather, where you just experience it until it eventually passes . . . and you know it’s going to come back sometimes when you least expect it. It’s perfectly normal, and healthy, to feel a wave of grief out of nowhere years after a loss. Not only will some part of you always miss a lost companion, you will also always remember the pain of a death. Not every waking minute, but when you’re reminded somehow, sure. Or just when your brain decides to go knock-knock, remember this?
It seems you’ve been going this alone, armed with logic and an inclination to be rather hard on yourself. While grief is something you do feel and deal with individually, you can work through it collectively. A grief support group might be just what you need, a place to feel that it’s normal, and not your fault, to be filled with dread. Your husband sounds understanding and patient; consider taking his cue and being more patient with yourself.


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Tuesday, April 21, 2015

INSPIRATIONAL STORY OF THE DAY

Meet Mui Thomas.  She does not have Moebius Syndrome; but she was born with a condition which leaves her with a very obvious physical difference.  But she shares much in common with us--she does not let her condition stop her, and she has many important lessons to teach.  Read more about it:

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When she was growing up, Mui Thomas, wanted to be a fashion model -- not an unusual aspiration for a young girl.
But Mui suffers from a rare genetic condition that leaves the skin on her face and body red raw and open to infection.
"I really don't think I knew that I didn't look like everybody else," she says.
She was born with Harlequin ichthyosis, which means her skin is extremely thick, dry and flaky -- resembling fish scales. She can't sweat but she can shed tears.
On the day we speak, her appearance raises few eyebrows at her local Starbucks in Sai Kung -- she's a familiar and well-known presence in the waterfront Hong Kong town where she grew up.
Mui's struggle to come to terms with her condition and other people's reactions to it has, at times, left her on the brink of suicide.
But, now 22, she refuses to let it get in the way of her life -- she has a full-time job, plays sport and is embarking on a career as public speaker -- educating and inspiring others about the challenges of looking "visibly different."

Long to live?

After she was abandoned at birth, long-time Hong Kong expats Tina and Rog Thomas began fostering Mui, when she was just one and a half years old. They were told she didn't have long to live.
"We wanted to give her a family life in the time she had," says Tina.
However, Mui began to thrive in a loving family environment and Tina and Rog formally adopted Mui when she was three years old.
Together they gradually learned how to manage her skin condition.
Each day she bathes twice, ideally for two hours each time, and everywhere she goes she carries a backpack with three or four tubs of cream that she must apply throughout the day to stop her skin from drying out.
She's thought to be the fourth oldest person alive with harlequin ichthyosis. The oldest is 31.
But while Mui's unusual appearance made little difference during her early years, that changed when she started secondary school.
The school she attended required that she be accompanied by a educational assistant, which put up a barrier between her and the other children and made it difficult for her to make friends.
Things got worse when she became a victim of cyberbullying. She began to deny her appearance, stopped bathing, taking her medication and applying the cream. At times, she considered jumping from the balcony of her home.
"They'd say things like 'You shouldn't have been born' -- and very personal things that only people who knew me would know," she says.
"It made me very wary of everybody. Even when people tried to be nice, I didn't repay it. I didn't trust them."
The worst episode lasted for 10 months and only stopped after police became involved and found the bully -- someone whom Mui thought was her friend.
Mui left school with no qualifications.
She says the school didn't push her to study and made too many allowances for her skin disorder.
"I still wish I had got a very hard kick up the backside from the teachers when I wasn't doing work," says Mui.

Inspiration?

Since leaving school, Mui has found a full-time job working with people with special needs and at weekends can be found running around a rugby pitch with a whistle -- she's a referee for kids' matches.
Along with her parents, she's also begun speaking about her experiences of living with a "visible difference" and cyberbullying at schools around Hong Kong. Her father has also written a family memoir called "The Girl Behind the Face."
Many have found her story inspirational -- a real life version of the young adult novel "Wonder" by R.J. Palacio about a young boy with a deformed face who enters middle school.
On Saturday, she will graduate from school assemblies and speak in front of a paying audience at a TEDx talk in the city.
Her father is both protective and proud. He thinks public speaking will help Mui come to terms with her condition but he's also wary that she could be portrayed as a "modern freak show."
"It's difficult for her because she spent so long denying it. The more she confronts it, the more she is aware of it -- it will build confidence," he says.
There's even talk she might take part in a fashion show for people with visible difference, realizing a childhood dream.
In person, Mui comes across as articulate, poised and confident -- something her mom says comes out of spending so much time with adults while growing up -- and it's easy to see how she could command an audience of hundreds.
But after two hours of chatting in a coffee shop, she's a little bored and keen to get back to her job. She flings her backpack over her shoulder and dashes off into Hong Kong's crowded streets.

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Monday, April 20, 2015

AWARENESS UPDATE

There are several items in the news today that either highlight growing awareness of persons with physical and other differences...or that highlight the lack of same. 

First:  there is evidence that, sadly, doctors sometimes too-easily dismiss parents' autism concerns (autism is sometimes associated with Moebius Syndrome):

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Pediatricians often fail to take seriously parent concerns about autism, new research suggests, sometimes delaying children from receiving a diagnosis and treatment for years.

In a study looking at the experiences of children diagnosed with autism as compared to those with intellectual disability and developmental delay, researchers found that doctors were 14 percent less likely to take a proactive approach when families cited concerns about autism.

Rather than refer children to specialists or for developmental testing, the study found that pediatricians often reassured parents worried that their child might be on the spectrum or indicated that their child “would grow out of it.”

“This study implies that the behavior of health care providers is likely a very important factor in delayed autism identification,” said Katharine Zuckerman of Oregon Health & Science University who led the study published online this week in The Journal of Pediatrics.

For the study, Zuckerman and her colleagues looked at data from a nationally-representative survey of parents of 1,420 children with autism and 2,098 kids with intellectual disability or developmental delay.

Parents of those later diagnosed with autism said they expressed concerns to their health care provider about their child’s development around age 2, a whole year earlier than moms and dads of kids with other delays. Nonetheless, among families surveyed, children with autism were not diagnosed until age 5, on average, even though kids with the developmental disorder can generally by identified by age 3.

Significantly, the study found that children whose doctors were passive about initial autism concerns waited as much as two years longer to be diagnosed as compared to those whose health care providers were immediately proactive.

“We know that early identification of ASD is beneficial to children and their families. Unfortunately, many families experience long delays between when they first have concerns and when their child gets diagnosed with ASD,” Zuckerman said.

The findings, researchers said, indicate that doctors may need more education and training to better respond to parent concerns related to autism in particular.

Currently, the American Academy of Pediatrics recommends that doctors conduct developmental screening at 9, 18 and 30 months with all children as well as autism-specific screening at 18 and 24 months.

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But there are also positive notes.  For example, ESPN and ABC will this summer air the Special Olympics:

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For eight days this summer, some of the world’s top athletes with intellectual disabilities will be featured on national television.

ESPN said this week it will air coverage of the Special Olympics World Games in Los Angeles across its networks.

The event’s opening ceremony will be broadcast live on ESPN co-hosted by Robin Roberts from ABC’s “Good Morning America” and ESPN’s Lindsey Czarniak and Kevin Negandhi.

Subsequently, ESPN, ABC or ESPN2 will air daily coverage of the weeklong event including features and key results from the competition. A “best of” special recapping the World Games will also be broadcast over two days a week later.

“The Special Olympics World Games is a truly compelling event, filled with some of the most extraordinary sports stories and people you will ever see, and we are looking forward to showcasing them,” said Russell Wolff, executive vice president of ESPN International. “Sports has the power to be unifying, uplifting and life-changing, and this event will be a remarkable and tangible example of that power.”

Previously, ESPN provided more limited online coverage of the 2011 Special Olympics World Games in Athens, Greece.

The Los Angeles games are expected to bring together some 7,000 athletes and 3,000 coaches from 177 countries in addition to 500,000 spectators for the event July 25 to August 2.

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And finally:  did you know that Masters' winner Jordan Spieth has a sister with special needs?  The newest winner of the Green Jacket was only too happy to talk about her:

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Basking in the glow after becoming the second-youngest player ever to win one of golf’s top prizes, Jordan Spieth was all too happy to talk about his sister with special needs.

Over the weekend, Spieth soared over golf’s better-known names to win the Masters with a score of 18 under par. The feat quickly put the 21-year-old in the same sentence with the sport’s longtime star, Tiger Woods, who also won the tournament at that age.

After sealing his victory at the famed Augusta National Golf Club in Augusta, Ga., Spieth looked forward to telling his sister Ellie, 14, who is on the autism spectrum, about his win. The younger Spieth didn’t make it to Augusta for the Masters, but did get to see her brother play at the Houston Open earlier in the month.

“She’s just going to be happy that I won,” Spieth said. “She was out there in Houston and after each round, she said, ‘Jordan did you win, did you win?’ I said ‘not yet, not yet’ and then ‘no.’ So I can tell her I won now.”

The comments came in between questions about everything from his performance at the Masters to the future of golf.

It’s not the first time, however, that Spieth has opened up about his relationship with his sister.

“Being Ellie’s brother humbles me every day of my life,” the golfer says on his website.

And Spieth’s mom, Chris Spieth, credits her daughter’s challenges with keeping the golf champion grounded.

“Jordan wouldn’t be where he’s at today if he didn’t grow up with Ellie,” his mom, Chris Spieth, told ESPN. “Jordan realizes this isn’t real life at the Masters. Trying to sit around and have dinner when his sister doesn’t want to eat when everybody else is eating and has a fit, that’s real life.”


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Thursday, April 16, 2015

I-JUST-THOUGHT-THIS-WAS-INTERESTING DEPT: 10 TRUTHS FOR SUCCESS AND SATISFACTION

Because who doesn't want that?  Read more about it:

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The two things most people search for in life are simple. People desire happiness and to feel satisfied with their lives. There are simple truths which can be applied to everyday life which guarantee greater success and that deep sense of personal satisfaction you yearn to experience in your life and career.

1. Just Do You: Be yourself. Let the results of your life be a reflection of your boldness to express your freely. Take care to exercise your own ideas, your free will and independence. Live from your individual uniqueness and the willingness to be different than others.
Your authenticity is that place within you that is true and secure enough to withstand the external destructive pressures that come from life.
When you are true to yourself and passionate about your life and career, you see choice rather challenge. Your genuine qualities are not set up on false pretenses because whatever path you choose in life is completely congruent with who you are.
2. Be Candid: There is nothing of greater significance to offer your life or business than honesty. To understand why being truthful is important examine how anyone, including yourself, benefit from dishonesty.

The one thing you cannot afford to lose in life is your reputation. Once your reputation is lost, based upon dishonesty, it is nearly impossible to recover it.
Living from the truth allows you to build relationships based in trust with loved ones, colleagues, competitors, staff, and customers. Those around you become energized by your candor inspiring them to want to progress their business and personal relationships with you forward.
3. Push yourself: In order to make the most of your life and career, challenge yourself. You cannot fulfill even a fraction of your dreams by sticking to the comfortable and secure. Where there is security there is nothing forcing you to rise to the occasion of maximizing the potential of who you are.
Challenge yourself to always be in pursuit of something which will stretch you. You have to have that "thing" that will make you wonder if you can actually achieve it. That elusive "thing" provides you the opportunity to engage in life, and in yourself, in ways that being secure and comfortable do not.
The more you push yourself and flourish, the greater your confidence becomes to push yourself again and again. Challenge not only helps you grow your skills and knowledge, it helps you develop belief in your capacity.
4. Put love first: The significant people in your life are those who genuinely feel for and worry about you. These are the individuals who will always be there, to fall back upon, when you have been disappointed by life.
The people who love and accept you, with your mistakes and weaknesses, and do not need you to be different are those who bring the most value to your life. They help refuel your belief in yourself when you cannot.
There is no amount of financial gain that could ever substitute for the love these individuals offer you. They bring a sense of connectedness and belonging which serve to make your life happier and more fulfilling. Those who do not value their loved ones are less well-rounded, less happy and less motivated and successful in life. Do not let this be you.
When you die you are not likely to wish you had worked more, you are likely to wish you had had more time with those you loved deeply.
5. Show Kindness: Treat all of those you interact with, with a sense of dignity and value. When you can make another person feel significant they will be motivated to stay in that perception in your mind.
Being thoughtful of others doesn't make you a push over. Thoughtfulness is that indistinguishable quality of being emotionally intelligent in all your exchanges. When you treat others with openness, kindness and respect you retain a calm power to stay rational and present in your communications.
Keep in mind that anger is never useful in relationships, personal or professional, as it is nearly impossible to respect an angry person. Anger doesn't wear intelligently on anyone.
6. Practice tolerance: Be mindful of others in the ways you expect others to be mindful of you. Practice tolerance and acceptance to bring a sense of peace to your life and world at large. Let go of small-mindedness, bigotry, belittling others, and being self-righteous.
Tolerance is an essential quality to possess. Think about who you are in the global world, or in the wholeness of life, and what you want your impact to be. Strive to be that bigger person.
Be open-minded to learning from all types of people and their differing beliefs, as you never know what type of person holds your next biggest opportunity in their hands.
7. Exercise Patience: Knowing the difference between patience and waiting is key to a successful life and career. Patience does not entail waiting. Waiting is action-less. When you practice patience you never stop working towards your dreams, even when you do not yet see results.
If you are waiting without working, you have stopped. When you are passionate there is no amount of work that you will cease doing if you see it as bringing you closer to your goals.
Patience means believing enough in what you have set out to achieve to keep going.
8. Fulfill your dreams: Do not just follow your dreams, you must fulfill them. Make each wish into a manifested destiny. Work towards your passions with consistency, precision and commitment.
Living your dreams is the stuff a well-live life is made of. What you pursue passionately will bring you a life of vitality, excitement and the joy that you deserve.
Your dreams and passions bring deeper meaning into your life and into the lives of others. When you live your dreams you become inspiring. You instill in others the belief that if it is possible for you then it can also be possible for them.
9. Practice gratitude: When you have a grateful heart your positive emotions become stronger, decreasing your negative emotional experiences of envy, victimology and jealousy. Gratitude makes your memories more positive and is a great catalyst in helping you to bounce back quickly from stress.
An attitude of gratitude helps you achieve life and career goals making your personal and professional lives more loving, productive and enjoyable places to be for you and everyone you touch.
10. Remain humble: Work quietly and allowing your success to do the talking. Humility is based in internal reflection, yet, when it comes to where you choose to focus your time and energy, it is all about other people for you.
In being humble you are not self-focused or worried about your image, which gives you more courage to risk and try new things. You are not compelled to try and be perfect because you are not stuck on expectations. This frees you from the paralysis of fearing failure because it is not your main concern.
When you are humble you approach life with openness and flexibility. You are not oppressed by the search for happiness or success, for yourself alone, because your main focus is not about trying to be either successful or happy. Instead you are caught up in projects, passions, people and things you consider bigger and more important than yourself and from this you end up with more happiness and success, as a simple byproduct.
The surest path to becoming happy and successful in life is in the helping of others to achieve the happiness and success they desire.
To experience happiness and that deep sense of well-being and satisfaction with who you are, what you are doing, and who you still desire to become you must contemplate daily on what it means to be authentic. You must be committed and deliberate in your search to challenge yourself, to face fears, to be good to others and to be the conscious creator of the wholeness of your overall life experience.
Sherapy Advice: Live these 10 truths as a daily meditation to practice and master.


Wednesday, April 15, 2015

AWARENESS UPDATE: ANGELINA JOLIE SAYS--DIFFERENT IS GOOD

And that's something that we with Moebius Syndrome can get behind.  Let's face it:  out in the world, that's how many people are going to see us.  And that's okay.  We can embrace it!  Because being "different" is good.  You're just as valuable as anyone else.  That's the message that we and others need to keep putting out there.  Had you heard that Ms. Jolie had said this?  She did so in a speech last month.  Good for her; and below you can read more about it:

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Angelina Jolie took the stage Saturday at Nickelodeon's 28th Annual Kids' Choice Awards and delivered a message of hope to anyone who's ever felt out of place.
In her first public appearance since revealing that she underwent a second preventive surgery to lower her risk of cancer, Jolie attended the show with her children, Shiloh and Zahara.
She hugged them before she went to the stage to accept the favorite villain award for her role as Maleficent in the live-action reimagining of "Sleeping Beauty."
"When I was little, like Maleficent, I was told that I was different. And I felt out of place -- too loud, too full of fire, never good at sitting still, never good at fitting in," the 39-year-old actor and humanitarian said.
"And, then one day I realized something, something that I hope you all realize: Different is good," she said, prompting enthusiastic screams from the young crowd.
"And, as your villain, I would also say cause a little trouble -- it's good for you."
    Jolie's career has been full of unconventional twists and turns, from her breakthrough role in the biopic "Gia" to her current role as an actor, filmmaker and special envoy of the U.N.'s High Commissioner for Refugees.
    Her personal life also has made front page headlines over the years, including her adoption of children from developing countries and her candor in discussing her health.
    Jolie, 39, wrote Tuesday in a New York Times essay that she had opted for the surgery after blood tests revealed markers that might have been an indication of early cancer.
    Two years ago, she underwent a double mastectomy for similar reasons. Jolie's mother died of ovarian cancer, and the actress has a gene mutation that makes her chances of developing breast cancer and ovarian cancer much higher than the overall population.
    Jolie's revelation provoked an outpouring of support as the news spread across social media.
    "It is not easy to make these decisions. But it is possible to take control and tackle head-on any health issue. You can seek advice, learn about the options and make choices that are right for you. Knowledge is power," she wrote.
     
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    Tuesday, April 14, 2015

    A REMINDER ABOUT THE VALUE OF SERVICE DOGS AND THERAPY DOGS

    Did you know that anyone with a disability or with physical special needs can qualify to acquire a service dog?  That includes some persons with Moebius Syndrome.  It's true, and I have blogged about that in the past---for example, check this out.

    And it is always helpful then to be reminded of how valuable service dogs and therapy dogs can be.  Here's a good recent story that lays this out--read on:

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    A 6-year-old Portuguese water dog named Moxie has shed light on the furrier side of medicine - providing a dog's-eye view of her job as a therapy dog as she cuddled with patients and staff.
    On a recent visit, Moxie's owner set her up with a GoPro as she took her weekly Thursday tour at the Hospital for Sick Children in Toronto.
    Owner Carolyn Robinson said Moxie always knows who needs the most help when she enters the hospital room going from patient to caretaker to medical staff.
    "[She is] touching the lives of so many patients and children, "said Robinson. "Being able to alleviate [stress]…animal therapy is all the benefits of chocolate minus the calories." 
    Moxie may not technically be part of the medical treatment, but Robinson said the dog can help increase endorphin levels and even help children on the road to recovery after surgery. In certain cases, Robinson and staff can get children on their feet to go for a "walk" with Moxie.
    "I’ve had nurses say to me, 'We tried absolutely everything to get this child out of bed and then Moxie came along and the child got out of bed and walked [the dog],'" Robinson said.
    Moxie had to go through extensive training so that she remains calm in all situations and is groomed before every visit to the hospital. Robinson said Moxie seems to take her duties as a therapy dog very seriously.
    "When that uniform is on her, she is right by my side," Robinson said. "She is on duty. She knows she is there to give her love." 
    After a long day's work, Robinson said she can tell Moxie is tired out.
    "After her day is done, she’s quiet," said Robinson. "She’s content…she loves what she does."
    Moxie was able to start visiting the hospital thanks to the PetSmart Paws for Hope Program at the Hospital for Sick Children.

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    Be sure and go to the original link to this story above; there are some great pictures and videos.


    Thursday, April 9, 2015

    BRAIN TALK DEPT AND I-JUST-THOUGHT-THIS-WAS-INTERESTING DEPT

    You know, Moebius Syndrome has a lot to do with the brain.  The reason we have at least partial facial paralysis, after all, is because two of our nerves from the brain to the face don't work as we'd like them to.  So we're always interested in this space about how the brain works, and the article below gets into that question.  Plus--I just thought it was interesting (of course!).  So read on--are our brains really as good at multi-tasking as we think they are???  The answer might surprise you:


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    Our brains on multitasking aren't nearly as good as we think they are. Let's say you're working on an activity over here, on the right side of the brain, and suddenly you're trying to multitask another activity, like talking on the phone.
    You're not actually doing both activities at the same time, in fact, you're now diverting your attention from one part of your brain to another part of your brain. That takes time, that takes resources, that takes brain cells.
    What happens on the other side of the brain is that you're starting a brand new activity, so in fact you're probably slower and not nearly as good at doing both activities at the same time.
    We can shift our focus really fast, sometimes it takes just a 10th of a second. But the time doesn't matter as much as the bandwidth the brain requires to move back and forth. Now that might affect your performance, and might also affect the quality of the work that you finally produce.
    Take an everyday activity like driving. When you look at the MRI of someone who is in driving mode, see how much of their brain is activating there? Now if you just layer in one more thing—if person is listening while they are driving—and all of a sudden the amount of attention, the amount of brain bandwidth going toward driving decreases by about 37%. So you're not multi-tasking, you've in fact reduced the amount of attention you're now paying to your driving.
    There's about 2% of the population that are super multitaskers. It's sort of a genetic gift. Most of us don't have this gift. But these are people who are truly able to do several different activities at the same time without losing efficiency or losing quality as they do all that work.
    This may or may not surprise you, depending on your perspective, but there have been studies that show women are generally better at multitasking than men. Also, people who thought they were the best at multitasking are almost always in fact the worst. Perhaps they were multitasking too much when they thought they were good at multitasking.

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