Play is Important for Adults Too!

(CNN)When’s the last time you did something that was so engaging, so much fun, you lost track of time?

For some, it’s belting out a karaoke tune. For others, it’s exploring a new city or playing kickball.

That’s what mortgage banker Sue Hamilton does for fun.  “It brings you back to a little bit of your childhood,” the 41-year-old said.Hamilton plays every week with a team at Atlanta’s Piedmont Park.

“We all remember playing kickball from PE when we were in grade school. You can get hit by the ball without getting hurt, which I think is probably a good thing for most of us,” said Hamilton, whose husband is also on a kickball team.

“I think most people go to work, and maybe there’s not as much silliness or playfulness in their day … and you do that with others, which is a plus for me — that social component,” she said.

So, what exactly is play?

In addition to being the “action of a game,” play is defined as “recreational activity; especially: the spontaneous activity of children,” as well as “the absence of serious or harmful intent” and “a move or series of moves calculated to arouse friendly feelings.”

“It’s such a big thing that people want to hold it down to make it something small. It’s not small. It’s so important,” said Dr. Bowen White, physician and founding member of the National Institute for Play, a nonprofit that supports research into the power of play.

“Play is so deeply ingrained in terms of our own evolutionary drive to survive, he said. “Play helps us connect with other people because we are open in a way that allows them to feel, maybe, this is a safe person to be with and maybe even fun to be around.”

It’s much more than a game, White said. And for adults, it’s not necessarily just intimate-partner time.

It’s a way of life, he said, that allows you to let your guard down, not be so serious and, as a result, connect better with others.

“We all come into the world knowing how to play,” White said, adding that as adults, we shouldn’t feel like we have to grow out of it. “Play is essential to our health,” he said. “If you want to have a fun life, you can’t have a fun life without play.”

Play should feel good, he said, adding that it has the opposite effect on the body as stress. Play often leads to laughter, which has been linked to decreased stress and inflammation and may improve vascular health.

“Your blood pressure goes down,” he said. “You release dopamine.”  People who play at work solve problems creatively .  Play also makes you more productive, White said.  “What you get from the culture is ‘work’s important,’ ‘more is better,’ ” said White, who consults with companies on creating healthy work environments. Adults, instead, should “figure out how to have more fun doing your work,” he said.

People tend to perform better professionally when they’re in a state of play, White said, noting that “playing” with problems at work sparks creativity.

Many companies are well aware of the power of fun to foster innovation. Google helped blaze the trail years ago when it set up play stations with ping pong, billiards and foosball tables all over its main campus. The company offered free snacks and exercise classes, and it let hundreds of software engineers design their own desks or work stations.

Google encouraged employees to play and collaborate, which it said helped with team-building and cooperation. Working with professional sports teams, White has taught athletes to “play easy,” rather than “playing hard,” by easing up on a grip or holding their bodies more loosely. “The best performances occur when they’re playing easy,” White said.

It’s a metaphor, he said, for anyone trying to accomplish a goal: Loosen up a little, have fun, and you’ll see progress. “If you can figure out how to do that, you’re going to be a lot happier and be more fun to work with,” White said. “You’ll be happier parents, a better spouse, a better partner.”

The evolutionary importance of play can be demonstrated in the brains and behaviors of rats and primates, said Dr. Sergio Pellis, neuroscientist at the University of Lethbridge in Alberta, Canada.

In his experiments, he denied rats the opportunity to engage in play by fighting and wrestling.  Those rats developed deficiencies in their brains’ pre-frontal cortex. This is the area responsible for executive functions, such as making judgment calls and emotional regulation.

“If you’re an adult male rat put in another cage of a rat you don’t know, the resident rat will see you as an intruder and beat you up,” Pellis said. If you’re a normal rat, you’ll find any place to hide — a platform, perhaps — and stay there, he said.

“If you’re a play-deficient rat, you’ll get beaten up and shortly thereafter move again and attract even more attention,” he said. “You’re not figuring out the appropriate thing to do in this situation.”

Similar research with monkeys led to the same results, said Pellis, co-author of “The Playful Brain: Venturing to the Limits of Neuroscience.”

While this type of experiment cannot be replicated in juvenile humans for ethical reasons, social science studies have shown kids who engage in more play end up with higher social skills a few years down the line, Pellis said, predicting more research in the next decade on adult human brains at play.

For 30-year-old kickball player Wesley Brown, an urban planner in Atlanta, the opportunity to take the field is truly a “social lubricant,” a phrase White uses to describe play.  “I’ve made friends through kickball,” Brown said. “There’s no way that I would’ve ever met any of these folks before: very, very different backgrounds, very different professions.

“Through playing and having fun together, we organize different activities during the week,” he said. “We have a baby shower that we planned. We have a wedding shower. We’re a very close-knit team.”

Hamilton, the banker, feels the same way.

“It’s an easier way to create conversation because there is a definitive topic, whereas, maybe, meeting somebody somewhere else at a bar or something, it’s not always easy to have a shared conversation,” she said.

“I feel like I’m a kid most days, so, for me, this is just another aspect of that,” Hamilton said. “I like to laugh a lot. I like to run around and be silly.”

Hamilton loves “being able to have that recess time that we did when we were younger and you can run around the field and be free of your daily responsibilities for at least an hour,” she said. “You don’t have to worry about work. You’re not thinking about whatever personal things might be going on in your life.”

For White, play is a way of being in the world — being more “playful.”

“The person at the grocery store that’s in line, can you goof with them? Or are you just in a hurry: ‘Oh, they’ve got 14 items’; you counted them, and it’s 12 or less. ‘I can’t believe that!!’ How does that feel being in that psychological space?”  Life, he said, is much easier with a playful approach.

read more
OnNovember 3, 2017, posted in: Latest News by

Iceland Has a Solution for Down Syndrome Births

With the rise of prenatal screening tests across Europe and the United States, the number of babies born with Down syndrome has significantly decreased, but few countries have come as close to eradicating Down syndrome births as Iceland.

Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women — close to 100 percent — who received a positive test for Down syndrome terminated their pregnancy.

While the tests are optional, the government states that all expectant mothers must be informed about availability of screening tests, which reveal the likelihood of a child being born with Down syndrome. Around 80 to 85 percent of pregnant women choose to take the prenatal screening test, according to Landspitali University Hospital in Reykjavik.

Using an ultrasound, blood test and the mother’s age, the test, called the Combination Test, determines whether the fetus will have a chromosome abnormality,  the most common of which results in Down syndrome. Children born with this genetic disorder have distinctive facial issues and a range of developmental issues. Many people born with Down syndrome can live full, healthy lives, with an average lifespan of around 60 years.

Other countries aren’t lagging too far behind in Down syndrome termination rates. According to the most recent data available, the United States has an estimated termination rate for Down syndrome of 67 percent (1995-2011); in France it’s 77 percent (2015); and Denmark, 98 percent (2015). The law in Iceland permits abortion after 16 weeks if the fetus has a deformity — and Down syndrome is included in this category.

With a population of around 330,000, Iceland has on average just one or two children born with Down syndrome per year, sometimes after their parents received inaccurate test results. (In the U.S., according to the National Down Syndrome Society, about 6,000 babies with Down syndrome are born each year.)

“Babies with Down syndrome are still being born in Iceland,” said Hulda Hjartardottir, head of the Prenatal Diagnosis Unit at Landspitali University Hospital, where around 70 percent of Icelandic children are born. “Some of them were low risk in our screening test, so we didn’t find them in our screening.”

When Thordis Ingadottir was pregnant with her third child at the age of 40, she took the screening test. The results showed her chances of having a child with Down syndrome were very slim, odds of 1 in 1,600. However, the screening test is only 85 percent accurate. That year, 2009, three babies were born with Down syndrome in Iceland, including Ingadottir’s daughter Agusta, who is now 7.

According to Ingadottir, three babies born with Down syndrome is “quite more than usual. Normally there are two, in the last few years.” Since the birth of her daughter, Ingadottir has become an activist for the rights of people with Down syndrome.

As Agusta grows up, “I will hope that she will be fully integrated on her own terms in this society. That’s my dream,” Ingadottir said. “Isn’t that the basic needs of life? What kind of society do you want to live in?”

Geneticist Kari Stefansson is the founder of deCODE Genetics, a company that has studied nearly the entire Icelandic population’s genomes. He has a unique perspective on the advancement of medical technology. “My understanding is that we have basically eradicated, almost, Down syndrome from our society — that there is hardly ever a child with Down syndrome in Iceland anymore,” he said.

Quijano asked Stefansson, “What does the 100 percent termination rate, you think, reflect about Icelandic society?”

“It reflects a relatively heavy-handed genetic counseling,” he said. “And I don’t think that heavy-handed genetic counseling is desirable. … You’re having impact on decisions that are not medical, in a way.”

Stefansson noted, “I don’t think there’s anything wrong with aspiring to have healthy children, but how far we should go in seeking those goals is a fairly complicated decision.”

According to Hjartardottir, “We try to do as neutral counseling as possible, but some people would say that just offering the test is pointing you towards a certain direction.” Indeed, more than 4 out of 5 pregnant women in Iceland opt for the prenatal screening test.

For expectant mother Bergthori Einarsdottir, who chose to have the test, knowing that most women did so helped steer her decision. “It was not pressure,  but they told me that most women did it,” she said. “It did affect me maybe a little bit.”

Over at Landspitali University Hospital, Helga Sol Olafsdottir counsels women who have a pregnancy with a chromosomal abnormality. They speak to her when deciding whether to continue or end their pregnancies. Olafsdottir tells women who are wrestling with the decision or feelings of guilt: “This is your life — you have the right to choose how your life will look like.”

She showed Quijano a prayer card inscribed with the date and tiny footprints of a fetus that was terminated.  Quijano noted, “In America, I think some people would be confused about people calling this ‘our child,’ saying a prayer or saying goodbye or having a priest come in — because to them abortion is murder.”

Olafsdottir responded, “We don’t look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication… preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder — that’s so black and white. Life isn’t black and white. Life is grey.”

read more
OnAugust 16, 2017, posted in: Latest News by

Inspiring Story of One Person’s Life With Cystic Fibrosis.

Venice Beach, California (CNN) As a small child, she played hide-and-seek with nurses, ripped out IVs to race around the hospital floor naked and left an explosion of glitter in her wake.

As a teen, she got boys to carry her uphill when she was tired, taught her best friend how to flirt and watched her doctor squirm as he gave her the safe-sex talk.

And as an adult, Claire Wineland has continued living out loud, even as her body fails her.

Claire, 20, has cystic fibrosis, a genetic and terminal progressive disease that’s landed her in the hospital for a quarter of her life. Ask what’s on her bucket list, and she’ll say she doesn’t have one.

Fixating on a checklist of goals before she goes “sounds exhausting,” she says, especially “when you’ve been dying your whole life.” Instead, she’d rather focus on doing all she can in each moment.

It’s a sort of wisdom that makes some describe this California free spirit as “an old soul” or “a little Buddha.”

I meet Claire in a Venice Beach café; everyone who works there seems to know her. She’s on a mission to normalize sickness, push back at those who pity her and have a meaningful life for however long it lasts. Although she certainly has her down days — “Who doesn’t?” she notes — this self-described “goofball” tackles life with humor and the sort of charisma that draws people to her.

Claire Wineland smiles broadly at a comedy roast to raise money for Claire’s Place Foundation in July 2015.  Still, she says, she must train people to feel comfortable around her.  “I can’t just expect people to know what to say,” she says, “I have to make them see me as more than my illness.”

She’s been working at it on a number of fronts: In high school, she created a series of videos that went viral and penned pieces for national audiences, including one for CNN. She’s appeared in magazines, on television shows and at teen award ceremonies. She’s heading up a foundation, writing a book — she promises it’s not “another happy sick person book” — and packing in as much as her 5-foot-2, 95-pound frame can handle.

Through it all, she gives public talks. On this day, that’s at a TEDx event in Encinitas, a beachside community 100 miles south of her apartment in LA’s Venice Beach.

We’d arranged to take the train down for the event. But she’d been fighting a fever as high as 103 the day before, the result of one of many infections her body continuously fights. When I offer to drive instead, she seems relieved. I am, too.

She’s chatty and bubbly for most of the two-plus-hour trip, until she feels the fever coming back and curls up in the passenger seat for a nap. The only sound from her now is an occasional cough and the pumping of a portable oxygen concentrator, which gives her the air she needs without the burden of a tank. When I glance over, I spot a tattoo on her left ankle: the “thumbs up” logo from “The Hitchhiker’s Guide to the Galaxy,” with the phrase “DON’T PANIC.”

But I start to do so when she wakes up and says her lungs feel “funny.” At the venue, she makes her way to the “green room,” where she sits, eyes closed, willing stomach pains to subside, trying to pull it together. She’s set to go on in 20 minutes, and I’m afraid she won’t make it.

She’s been riveting audiences since she was 14, when she first stepped on a stage in a new ruffled dress. When I picked her up at her apartment, she wore faded black jeans and a black T-shirt that read “Sexual Intellectual.”

“Life is too short to not be yourself,” she said.

Ever since she was little, she found it strange how people treated her. They’d peer down with sad eyes and say, “I’m so sorry.” It was a statement she heard so often, it was hard not to internalize. And in a society consumed with being healthy, she grew confused.

“What happens when you have an illness where you’re never going to be healthy?” she asked. “Does that mean I’m never going to have a life? Am I never going to do anything or be anything other than a sick kid?”

Claire is one of 70,000 people worldwide, 30,000 in the United States alone, who live with cystic fibrosis, the Cystic Fibrosis Foundation estimates. To have the disease, both parents must be carriers of the CF gene. If they are, there’s a one in four chance their children will be born with the disease.

Cystic fibrosis leads to an overabundance of mucus, which blocks airways and traps infections in the lungs, complicates digestion, affects the pancreas and other organs and, with time, causes respiratory failure.

At last count, Claire says, she’s had more than 30 surgeries. On a daily basis, she takes about four dozen medications, including self-administered shots for her CF-related diabetes, and might spend up to six hours on breathing treatments.

She dons a vest to shake her lungs and loosen mucus, and uses a nebulizer to blow in steam and inhale medicines. She can cough up enough mucus each day to measure in cups. She gets admitted to the hospital for regular tuneups and intensive treatments.

All the while, with her lung capacity diminished, her body works harder to breathe.

“It’s like I’m jogging 24/7,” she said. She must consume as many as 5,000 calories a day to maintain her weight — forget about gaining any.

That explains the two large pastries she ordered for lunch when we met, and the French fries she got to go. And it’s why her younger sister, Elanore Nordquist, 13, used to get miffed whenever she wasn’t allowed a second piece of cake but Claire could always have as much as she wanted.

Even with this carte blanche for consumption, Claire takes in 2,000 calories through a feeding tube as she sleeps, while a machine helps her breathe so her body can rest.

Claire can laugh at the absurdities in her life. She tells stories of strangers who’ve approached her with unsolicited prescriptions for cures. The produce section of Whole Foods is ripe for material, she says. One shopper told her she simply needed to eat more pineapple. Another said all she required was a mushroom cleanse.

And then there was the homeless guy outside a gas station who insisted that the mind can change reality and that she didn’t need to be sick. She remembered thinking, with a laugh, “If that’s true, why are you homeless?”

But it was a friend who, when Claire was 11, changed her outlook by handing her a book he insisted she see.

Claire has always welcomed chances to escape Los Angeles and breathe cleaner air. Here, she visits Vancouver, British Columbia, several years ago.

It was Stephen Hawking’s “A Brief History of Time.” The cosmology book blew her young and curious mind, and she rushed to the library to learn more about its author. Only then did she find out that Hawking had ALS, or Lou Gehrig’s disease, and was terminally ill, too.

Until that moment, Claire — an avid reader — had yet to find any role models, examples of sick people doing remarkable things.

“His body was completely failing, but he was contributing something incredible to society,” she said. Hawking’s diagnosis did not define him. “He transcended it.”

In him, she found inspiration, though it would take a steep downturn for her to see her way up.

The sicker a person with cystic fibrosis gets, the more work they need to do to stay relatively well — and the harder it is to do that work. It’s enough to make some “CFers,” as Claire calls them, stop trying.

She gets it because she was once there.

“It’s not that I wanted to die,” she said. “But I didn’t know how to live.”

At 12, she feared that she was surviving just to survive.

During a hospital stay, she had become close friends with Vanessa, another girl with cystic fibrosis. CFers aren’t supposed to be together, as they carry bacteria that can be deadly if shared. But these two girls connected at a safe distance, doing art projects across the room while wearing protective masks. They made disco balls for the nursing station out of crushed CDs and glue, shared an understanding and a sense of humor and, over the course of a year and a half, a deep friendship. And then, Vanessa died.

Bereft and facing a lifetime of treatments, Claire asked herself, “Why am I doing this?”

 

Claire and her sister, Elanore Nordquist, cuddle the night before Claire moves out of the house. One of the things Claire appreciates most about Elanore is that she’s never treated Claire like a sick person.

So she began to lie, saying she took her medications and treatments when she didn’t. For a year, her health slipped, and she said no one could figure out why. Claire, who’d always peppered her doctors and nurses with questions, knew the language and how to trick everyone.

The day after her 13th birthday, a straightforward surgery to deal with acid reflux spiraled into chaos. She contracted a blood infection that attacked her lungs. She could feel them failing.

As her oxygen levels plummeted, she began hallucinating. In a moment of clarity, she thought, “I don’t want to actually die. I want to see what happens in life. I want to see where it goes.”

She was placed in a medically induced coma, intubated and hooked up to an oscillator, a machine that gently puffed air into her fragile lungs. No child with CF had successfully come off an oscillator, doctors told her parents. Claire says she was given a 1% chance of survival. She flatlined twice.

Her little sister was 6 at the time. Elanore remembers a social worker talking to her before she went in — “all sanitized and in a gown” — to see Claire.  “They told me to say goodbye,” Elanore said. “They told me ‘she’s probably not going to wake up.’ ”

There was no white light. Instead, Claire transported herself to a place she’d never been: Alaska.

Her subconscious journey began beneath ice water, she says. When she surfaced, she peered up at a mountain of snow. She sat amid ice-crystal-covered pine trees, floated on ice sheets while looking up at stars and hung out in a woodland house where animals streamed in to visit her.

 

After her coma, Claire traveled to Sitka, Alaska, the place she believes she subconciously visited.

Claire remained in a coma for more than two weeks. When she woke up, she learned that her dream world had unfolded while she had been submerged in an ice bath to bring down her fever.

Though conscious again, she couldn’t walk, sit up or hold silverware. She had to wear diapers. Her mom called her “Grandpa,” a memory that still makes her laugh.

“My body had no reserves left,” she said. “It was kaput.”

In the many months she worked to get stronger, she found renewed purpose.

“I feel like she had a spiritual experience,” said her mom, Melissa Nordquist Yeager. “She came out inspired to help others.”

Claire entered the world the way she lives: boldly.  Yeager was overdue to give birth to her firstborn when a routine ultrasound morphed into a scene of terror.

She watched the doctor’s face as he studied the screen. He ducked out and returned with another doctor. They told her that something was wrong with the baby and that Yeager had to be induced immediately.

Claire was born with meconium ileus, a bowel obstruction that is a telltale sign of CF. Her bowel had ruptured, leaving her belly protruded, and she was whisked off for the first of many surgeries.

“The prognosis was five years,” Yeager said, “and that was a maybe.”

Claire spent the next seven weeks in neonatal intensive care. Her father, John Wineland, recalls peering down at his daughter as she screamed amid the medical equipment and tubes. Their eyes locked.

“It’s going to be OK,” he remembers telling her. “We’re in this together.”

Just like that, Claire’s parents, who then lived in Austin, Texas, were jolted from naiveté.

 

Claire has spent a quarter of her life in the hospital, mostly at Long Beach Memorial Medical Center in California, where her medical team is just like family.

Raising a daughter with CF “has consumed most of my attention, most of my life,” said Yeager, who now lives in Seal Beach, California. She and Wineland, of Santa Monica, never married and decided to split when Claire was 3, but they remained close friends and have continued to tackle Claire’s care together.

With Claire in the hospital two or three months a year, Yeager never felt that she could build a career. She lost a handful of jobs and quit others as hospital stays dictated. She’d take the day shifts with Claire while Wineland took nights. He’d hunker down next to Claire in the hospital, watch movies with her at 3 a.m. when she couldn’t sleep, and head to work in the morning.

All the while, Claire’s parents — and, by extension, Claire — were surrounded by friends. They’d come to the hospital with meals, stick around when her parents couldn’t, help rally the family and manage their lives. They also helped make Claire more outgoing and sociable, her dad says.

Claire grew up knowing that she and her parents were fortunate, that too many families lacked the support they had. After waking from her 16-day coma, Claire proposed starting an organization to offer financial and emotional help to others navigating life with CF.

Whether it’s covering rents, mortgages, insurance premiums or car payments, Claire’s Place Foundation aims to relieve pressure when CFers are hospitalized so families can focus on what matters most. Not long ago, it even helped find an apartment for a homeless CFer who was floating between shelters.

What started as “a side project to celebrate (Claire’s) life and survival became a passion of all of ours,” said Yeager, who serves as the executive director.

And for Claire, the foundation changed everything.

“All throughout my teenage years, I was able to hold on to the foundation as a means to remind me that I had value,” she said. “It’s important for people who are sick to feel empowered. It gives them reason to take care of themselves.”

Don’t touch her sushi

In high school, Claire launched The Clairity Project, a website offering insight into her life, including videos that became popular on YouTube.

She offered honest talk with a smile about dying, life expectancy, even the perks of being sick. She gave tips on how to interact with sick people, answered questions she’s often asked and introduced her family. She and her father, on guitar, performed together, singing Bob Dylan’s “Knockin’ on Heaven’s Door.”

She stepped away from making videos after no longer seeing eye-to-eye with a production company that got involved. Instead, she decided to focus on what she could control and feel good about: the foundation and her speaking engagements.

She also embarked on a new phase: Since graduating high school, she’s lived on her own with a roommate in Venice Beach.

A 2015 trip to Europe with childhood friend Alicia Schomer, who says Claire has changed her: “I’m not as terrifed of the thought of death anymore, but I am terrified of not living life to the fullest.”

It can be hard for any parent when a child leaves the nest, but for Claire’s mom, the transition has been even more fraught.

Yeager knows how much work goes into Claire’s care and worries that her daughter won’t ask for help.

“I’m happy for her, and I know she’s capable,” her mother said. “But I just see how sick she’s getting.”

A year ago, Claire was at 50% lung capacity, Yeager says. Today, she’s at 30%. She must take antibiotics to beat back recurring infections, which have become resistant to most of the drugs.

And when she turned 18 and could decide for herself, Claire announced that she wasn’t interested in being on the list for a double lung transplant.

“I had to be honest,” she said. “It’s not for me and never has been.”

Though transplants can extend a life, they’re no cure. She’d have to live on steroids, which she hates taking. She’d run the risk of developing new issues when she’s used to the ones she has. Plus, her body could reject the new lungs.

“And you can’t eat sushi afterwards. That’s a no,” quipped Claire, who says she’d spend hundreds of dollars a month on sushi alone, if she could.

She insists that she’s not giving up, though. Instead of opting for a transplant, she’s holding out hope for a cure. If she got new lungs, she says, she wouldn’t qualify for drugs in development. Therapies developed in trials are now helping many CFers, according to the Cystic Fibrosis Foundation, and eventually, with other clinical trials now underway, as many as 95% of CFers could benefit.

Her decision was a blow to her parents. They’ve had to accept that she won’t pursue an option that could give her another 10 years.

“Just think of it as insurance, even if you don’t want to do it,” her mom pleaded at first. “Get on the list so you can change your mind.”

But Yeager, no matter how uncomfortable it makes her, knows to trust her daughter’s intuition.

“She has a relationship with her body that is sacred,” explains her dad, who, like Claire, is a practicing Buddhist. Claire’s thinking, he said: “This is the body I came in with. This is the body I’m going out with.”

And as her father, “I have to live with it.”

Claire is Wineland’s only child. He says she’s helped him become a better person.

He’s learned “to not be afraid of what hasn’t happened yet” and believes that Claire is exactly how she’s supposed to be. He’s learned to “love what is.”  At 51, he finds comfort in meditation and yoga, which Claire practiced for years, before her coma.

Wineland is a life and relationship coach. Together, he and Claire have explored ways to grow spiritually. When Claire was 10, he says, she walked on fire at a retreat run by motivational speaker Tony Robbins. He’s had to figure out healthy ways to deal with pain, even to see the beauty in it.

“When you don’t know what’s going to happen to your only child,” he says, “it can be pretty debilitating.”

Claire’s parents, Melissa Nordquist Yeager and John Wineland, split when Claire was 3 but remain close friends and partners when it comes to her care.

Humor has also helped him cope. When there’s a long line at a restaurant, he says, he’ll sometimes send her to the front of the line coughing to play “the sick-kid card.”

Yeager too marvels at what Claire’s done for her. She says her daughter’s aura and energy lift those around her, making Claire “a force of nature.”

During a recent hospital stay, mother and daughter were talking about death, a subject they don’t shy away from.

“After you die, you’re closer to everyone you love, because you’re part of everything,” Yeager remembers Claire saying. The words were a gift, a reminder that her daughter’s essence will remain always, even after she’s gone.

“If and when it does happen,” Yeager said, “I’m never going to forget her saying that.”

Elanore, Claire’s only sibling, is more no-nonsense. She never treated Claire differently, a fact Claire has always treasured.

“She couldn’t care less that I was sick, which I loved,” Claire says. “It was refreshing.”

When she was younger, Elanore cared so little that sometimes she’d even unplug Claire’s oxygen without telling anyone.

“We wrestled a lot,” Claire remembers with a laugh. “She’d unplug it to make me tired so she could win.”

She gets how sick Claire is today. Still, she doesn’t see Claire as a sick person.

“She’s just a person,” Elanore says. “She’s not all-knowing. She’s still figuring it out, like a lot of people. … She needs the freedom to be a 20-year-old.”

Though Claire had been attending Santa Monica College, part of her freedom meant putting school on hold.

“Truth be told, I probably wouldn’t make it to graduation,” she said. “I feel my body changing, and I had to make an executive decision.”

Instead, she’s focusing on what she can accomplish now — including a new partnership with Zappos for Good to make hospitals more, well, hospitable. She’s designing the renovation and decoration of a playroom and intensive care rooms at the Children’s Hospital of Nevada at UMC in Las Vegas, which Zappos will pay for. The partnership began after Claire addressed about 2,000 people at the company in November.

Calling her “super inspiring,” Zappos CEO Tony Hsieh said, “I’m pretty sure she brought tears to most of the people in the room.”

What her Zappos audience didn’t know that day was how awful Claire felt.

Over the past couple years, she’s had more bad days than good. And in Claire’s world, that can’t stop her. If she bowed out whenever she felt under the weather, she says, she’d never accomplish a thing.

It’s like that again today as she sits in the green room in Encinitas, the TEDx audience awaiting her talk.

The venue is a large meeting space behind a vegan restaurant. Attendees sip kombucha on tap and exchange hugs that last extra beats. When someone asks whether there’s a yoga instructor in the room, they raise their hands en masse. Outside in the hallway are pieces of self-help literature, an announcement for a festival “dedicated to the Divine Goddess” and business cards for a spiritual medium.

When I peek in on Claire, I grow worried. The room is dark, and her eyes are closed, her arms folded across her belly. I fight every protective instinct to whisk her off and take her home.

Instead, she rallies.

As the emcee introduces her, Claire stands tall, showing no sign of pain or discomfort. She strides toward the stage amid applause, her smile wide. If not for the pumping oxygen concentrator slung over her shoulder, strangers might not suspect that anything’s wrong.

She jumps in and talks about the fear she had when she first spoke publicly, the guilt she felt whenever she landed in the hospital, the isolation CFers often feel. She also speaks of what inspires her and her understanding that illness shouldn’t stop anyone from living proudly.

“It’s OK to feel pain and experience it,” she says. “I’m not trying to fix myself. My suffering has given me so much.”

For about 18 minutes, she sets out to change how people think.

When she’s done, the crowd stands and applauds. Some audience members hoot and holler. As she weaves through the crowd toward the exit, I chase after her, overhearing whispers like, “What a gem.”

It’s clear people would like to talk to her, hug her, corner her for conversation. She shoots me a glance, though, that says, “Let’s get out of here.”

Claire has given all she can, and she knows she’ll pay a price.

In the weeks that follow, Claire can’t shake that infection. Then, in mid-June, an ambulance rushes her to the ER: Her fever is back at 103, her heart rate is at 185, and her white blood cell count is 30,000. Claire’s oxygen saturation levels are falling, a sign of lung failure.

Not since the scare that landed her in a coma six years earlier has the situation felt so dire, her mother says.

For a few days, Claire only gets worse. She’s transported to Long Beach Memorial Medical Center, where the staff feels like family. She has sepsis and a severe case of pneumonia and spends a week in intensive care. Doctors come close to putting her on a ventilator when one of the only two antibiotics that still work for her kick in.

“I thought this was it,” Yeager says. “It was an eye-opener for all of us.”

It’s too early to know how much of a toll this setback will take on Claire, who is expected to head home from the hospital Wednesday.

“We think of Claire as invincible,” her mother says, “and this was a reminder.”

A reminder of how important it is to live each moment fully. A reminder of the lessons Claire still hopes to teach before it’s too late.

read more
OnJuly 5, 2017, posted in: Latest News by

Trampoline Injuries Soar

Injuries at trampoline parks have soared in recent years, according to a study published Monday in the journal Pediatrics.

Trampoline injuries lead to nearly 100,000 emergency room visits a year, according to estimates from the National Electronic Injury Surveillance System. The majority of the injuries occur at home, and that number didn’t increase year to year from 2010 to 2014, researchers found.

But injuries rose significantly at trampoline parks during that time, from 581 in 2010 to 6,932 in 2014.

Patients injured at trampoline parks, which often feature wall-to-wall trampolines, are more likely to be admitted than those injured at home, possibly due to increased liability issues at trampoline parks, researchers said. Lawsuits led to the closure of one park, the study noted.

“The greater the number of parks, the more children are exposed to injuries related to trampolines,” said Dr. Katherine Leaming-Van Zandt, an emergency medicine physician at Texas Children’s Hospital who was not involved with the study.

The American Academy of Pediatrics cautions against recreational use of trampolines. Still, trampoline parks’ popularity continues to surge, with an average of five or six parks opening per month, the study said.

The majority of injuries at trampoline parks were in the lower extremities, the researchers said; 59% of emergency room admissions were leg fractures.

Injuries at home tended to be to the upper extremities, such as elbow fractures, which made up 34% of admissions, and forearm fractures, which made up 18%.

“Trampoline parks’ ability to reach higher heights is certainly a contributor to more lower extremity injuries because the impact as they’re landing can be much greater,” Leaming-Van Zandt said.

There are some ways to increase safety for children using trampolines, such as using protective padding, using trampolines without exposed springs, avoiding somersaults and flips, and ensuring that children don’t jump all at once. Parent supervision is key, too.

“Don’t be lulled into a sense of complacency or a feeling of safety because there are extra people around watching the children,” Leaming-Van Zandt said. “It’s important that parents keep a close eye on their children.”

In a statement responding to the study, the International Association of Trampoline Parks said that more than 50 million people visited trampoline parks in North America in the past year, and “there would naturally be an increase” in the number of injuries reported as the parks gained popularity.

“We believe that the positives of youth recreational sports far outweigh the negatives and we are actively engaged in programs aimed at promoting the safety and well-being of jumpers who visit our member parks,” the statement said.

read more
OnAugust 2, 2016, posted in: Latest News by

The AMA Takes a Stand on LED Street Lights

The American Medical Association (AMA) has just adopted an official policy statement about street lighting: cool it and dim it.

The statement, adopted unanimously at the AMA’s annual meeting in Chicago on June 14, comes in response to the rise of new LED street lighting sweeping the country. An AMA committee issued guidelines on how communities can choose LED streetlights to “minimize potential harmful human health and environmental effects.”

Municipalities are replacing existing streetlights with efficient and long-lasting LEDs to save money on energy and maintenance. Although the streetlights are delivering these benefits, the AMA’s stance reflects how important proper design of new technologies is and the close connection between light and human health.

The AMA’s statement recommends that outdoor lighting at night, particularly street lighting, should have a color temperature of no greater than 3000 Kelvin (K). Color temperature (CT) is a measure of the spectral content of light from a source; how much blue, green, yellow and red there is in it. A higher CT rating generally means greater blue content, and the whiter the light appears.

A white LED at CT 4000K or 5000K contains a high level of short-wavelength blue light; this has been the choice for a number of cities that have recently retrofitted their street lighting such as Seattle and New York.

But in the wake of these installations have been complaints about the harshness of these lights. An extreme example is the city of Davis, California, where the residents demanded a complete replacement of these high color temperature LED street lights.

Two problems with LED street lighting

An incandescent bulb has a color temperature of 2400K, which means it contains far less blue and far more yellow and red wavelengths. Before electric light, we burned wood and candles at night; this artificial light has a CT of about 1800K, quite yellow/red and almost no blue. What we have now is very different.

The new “white” LED street lighting which is rapidly being retrofitted in cities throughout the country has two problems, according to the AMA. The first is discomfort and glare. Because LED light is so concentrated and has high blue content, it can cause severe glare, resulting in pupillary constriction in the eyes. Blue light scatters more in the human eye than the longer wavelengths of yellow and red, and sufficient levels can damage the retina. This can cause problems seeing clearly for safe driving or walking at night.

You can sense this easily if you look directly into one of the control lights on your new washing machine or other appliance: it is very difficult to do because it hurts. Street lighting can have this same effect, especially if its blue content is high and there is not appropriate shielding.

The other issue addressed by the AMA statement is the impact on human circadian rhythmicity.

Color temperature reliably predicts spectral content of light — that is, how much of each wavelength is present. It’s designed specifically for light that comes off the tungsten filament of an incandescent bulb.

New atlas shows extent of light pollution; what does it mean for our health?

However, the CT rating does not reliably measure color from fluorescent and LED lights.

Another system for measuring light color for these sources is called correlated color temperature (CCT). It adjusts the spectral content of the light source to the color sensitivity of human vision. Using this rating, two different 3000K light sources could have fairly large differences in blue light content.

Therefore, the AMA’s recommendation for CCT below 3000K is not quite enough to be sure that blue light is minimized. The actual spectral irradiance of the LED — the relative amounts of each of the colors produced — should be considered, as well.

The reason lighting matters

The AMA policy statement is particularly timely because the new World Atlas of Artificial Night Sky Brightness just appeared last week, and street lighting is an important component of light pollution. According to the AMA statement, one of the considerations of lighting the night is its impact on human health.

In previous articles for The Conversation, I have described how lighting affects our normal circadian physiology, how this could lead to some serious health consequences and most recently how lighting the night affects sleep.

In the case of white LED light, it is estimated to be five times more effective at suppressing melatonin at night than the high pressure sodium lamps (given the same light output) which have been the mainstay of street lighting for decades. Melatonin suppression is a marker of circadian disruption, which includes disrupted sleep.

Bright electric lighting can also adversely affect wildlife by, for example, disturbing migratory patterns of birds and some aquatic animals which nest on shore.

The AMA has made three recommendations in its new policy statement:

First, the AMA supports a “proper conversion to community based Light Emitting Diode (LED) lighting, which reduces energy consumption and decreases the use of fossil fuels.”

Second, the AMA “encourage[s] minimizing and controlling blue-rich environmental lighting by using the lowest emission of blue light possible to reduce glare.”

Third, the AMA “encourage[s] the use of 3000K or lower lighting for outdoor installations such as roadways. All LED lighting should be properly shielded to minimize glare and detrimental human and environmental effects, and consideration should be given to utilize the ability of LED lighting to be dimmed for off-peak time periods.”

There is almost never a completely satisfactory solution to a complex problem. We must have lighting at night, not only in our homes and businesses, but also outdoors on our streets. The need for energy efficiency is serious, but so too is minimizing human risk from bad lighting, both due to glare and to circadian disruption. LED technology can optimize both when properly designed.

read more
OnJune 21, 2016, posted in: Latest News by

Mom of Baby with Down Syndrome Sends Letter to Doctor Who Suggested Abortion

(CNN)  Florida mom Courtney Baker expected no bumps on the road when she learned a third child was on her way.

“My first two pregnancies were so easy. I was expecting this one to be easy too,” she told CNN.  But a couple weeks later, her baby was prenatally diagnosed with Down syndrome.

The doctor suggested an abortion. He told her how tough life would be tending to a child with the condition. He made her feel unsupported.

Their daughter Emersyn is now 15 months old and the light of her life. And Baker felt she couldn’t hold in her feelings about that day any longer.  So she sat down and wrote the doctor a letter.

“I’m not angry. I’m not bitter. I’m really just sad,” Baker wrote in the letter, which she posted on her Facebook page. “Instead of support and encouragement, you suggested we abort our child. I told you her name and you asked us again if we understood how low our quality of life would be with a child with Down syndrome.”

But that’s not been the case, she said.  “Emersyn has not only added to our quality of life, she’s touched the hearts of thousands. She’s opened our eyes to true beauty and pure love.”

In the letter, Baker said she and her husband dreaded their appointments from their very first visit to the doctor.   “The most difficult time in my life was made nearly unbearable because you never told me the truth. My child was perfect.”  She told CNN she lacked support and information. “We didn’t know what to do next.”

The doctor wanted to talk to her and her husband, Matt, about options.  “There are no options,” she recalled telling him. “We’re going to keep her.”

She summed up her feelings in closing the letter:

“My prayer is that no other mommy will ever have to go through what I did. My prayer is that you, too, will now see true beauty and pure love with every life displayed on every sonogram. And my prayer is when you see that next baby with Down syndrome lovingly tucked in her mother’s womb, you will look at that mommy and see me, then tell her the truth…”Your child is absolutely perfect.”

Baker says she doesn’t know if the doctor has received the letter.  But the note has struck a nerve with other parents.  And that was her intention. In sharing her story, she hopes that nobody else has the same experience.  “I can’t imagine anybody else going through what I went through,” she said.

read more
OnJune 8, 2016, posted in: Latest News by

The End of Free Range Childhoods?

A few years ago, Tytia Habing moved back to the stretch of land where she grew up in rural Illinois, just a half-mile from her parents.  “I’m right back where I started,” she said, among the same fields of beans and corn, among the same people.  Except one, in particular.

Now there’s Tharin, her son. He was born overseas, and he was 4 when they moved to Illinois. He’s 8 now, and he has bruised knees, dirty nails and an endless well of energy. His parents wanted him to be outside in a safe, wide-open place where he has freedom to roam, and that meant coming home.

Habing, a photographer, began to shoot images of Tharin as he first explored this land that was so familiar to her. Only once she looked more closely did she realize she had more than family snapshots. It was black-and-white memories of childhoods past.

“He was getting to do the things that I got to do when I grew up,” Habing said.

Of course, she and her son are different. She was a quiet and content girl, she said. She spent hours playing with her siblings.  Tharin is an only child, and he is nonstop motion. He will get up the morning and head outside to check on the plants or hunt the bugs around the farm. Cats love him, and new ones seem to emerge all the time, seeking affection from him.

He’s obsessed with his four-wheeler and will venture all over the farm, exploring new territory and getting stuck in mud puddles.  “His grandpa has one, his uncle has one, he thinks he needs a bigger and better one,” Habing said. “He will literally ride that four-wheeler all day long, till he runs out of gas.”

Habing shoots in black and white just because it’s how she feels most comfortable. Still, to capture an image is a pleasant coincidence. There’s no hovering over Tharin.  “You still can’t plan it,” Habing said. “I just let him do his own thing.”

She gets a lot of email from older people, she said — people who happen upon her photos and see a childhood that looks like their own, one that seems almost impossible for a kid to have now.

“You can’t just let your kid run anymore. You get arrested, basically,” she said. “I want him outside and to learn things on (his) own.”

Not all the photos inspire warm nostalgia. Habing often captures Tharin with toy guns, and she’s noticed that the images raise eyebrows. To Tharin, anything can be a weapon, whether is a water gun, a stick or a piece of cardboard.

They are not “gun people,” she said, but there are actual guns around the farm. More likely, he learned it from TV or video games, she said — he certainly plays more of those than she did.

Or maybe it’s just Tharin. Or just age 8. Or just boyhood.

Children, Habing believes, need to connect with nature, make mistakes and get themselves out of jams.

“I hope people will look at them,” she said of her photos, “and remember that kids need to be outside.”

 

read more
OnMay 16, 2016, posted in: Latest News by