A.N

I am Mama to a 2.5 year-old tubie named Adeline, who has been tube fed her entire life.  She’s had nearly every type of tube; OG, NG, NJ, G, and now GJ.  Addie uses her feeding tube to receive about 50% of the calories she needs to grow, to get medication, to keep her hydrated, keep her blood sugar stable, handle some of the acid in her belly, and to even decrease vomiting and gas.  Her feeding tube saves her life,  but is also a real pain in the ____.  
Since it’s Feeding Tube Awareness Week , I was inspired to spread awareness through imagery and quotes from other Tubies.  I’ve been overwhelmed with the response I’ve gotten from my hashtag #ChangingTheFaceOfFed.  Full disclosure, I didn’t completely come up with this on my own, but was inspired by the Changing the Face of Beauty campaign.  It’s a nonprofit committed to equal representation of people with disabilities in advertising and media worldwide.  That movement is working; the 2018 Gerber baby, Lucas happens to have down syndrome.  So I’m jumping on the bandwagon of #changingtheface but I am doing it for my people, my favorites, TUBIES!  

 

Being a tubie, it can often be invisible, under clothes, and is not always obvious. And if the tube is visible, the person may not LOOK sick.  My hope is to change the perception of what it looks like to have a feeding tube through imagery and quotes.  I wanted to share with the world the perspective that a tubie (or their caregiver has) about gaining nutrition.  Having a feeding tube is life changing, life giving, and life altering.  Without further ado, here are the faces and voices of those with a feeding tube. 

Dear body,

 Thank you for carrying me through decades of ill health. Thank you for enduring the pain and discomfort. Thank you for surviving the impossible. Thank you for carrying me through and waking me up every morning. It’s a struggle to love you sometimes But the good outweighs the bad. The wind in my hair, the love from my family, seeing the sunset, the ground we walk on, laughing till my belly hurts in a good way. How can I not love you? 

-Renee from Renee's Fight

Having a child with a life threatening condition changes you.  It brings out strength in you that you never knew you had,  it makes you appreciate the little things in life, it makes you fear that every memory you make together may be your last, and it teaches you that miracles do exist. 

-Author Unknown (Submitted by Ryker's Mama Shawna Ammons)

 

“Some girls wear bows and tubes and still look fabulous”

Kelsey Ohs from A Family of Ohs

"Nothing can dim the light which shines within."

Maya Angelou - Submitted by Kierra Michelle Brennan 

When I stopped focusing on the “normal” way to feed your child and started focusing on the fact that my daughter was able to receive nutrition in spite of her conditions, I started to realize the amazing gift that this tube is. It’s not something to be pitied. It is something to be forever grateful for.

-Maddie Crawford 

"The wound is the place where the light enters you"

Jalaluddin Mevlana Rumi - مولوی  Submitted by Renee from Renee's Fight

 It’s okay to be selfish • You’re your own best advocate• Rest your body when it needs it • Pain is temporary • Medical devices don’t make you less beautiful• Say a thanks for waking up every morning. Add love to everything you do• Forgive more
• Worrying about the future doesn’t help• It’s okay to cut family and friends out of your life• It’s okay to be negative and have down days • Don’t ignore symptoms of Sepsis• The fight is worth it

- Renee from Renee's Fight

Tube feeding is a way of life for us. We would love for it to be accepted just like breast feeding or bottle feeding because for many families tube feeding is our normal. As long as baby is fed that is all that matters in the end.

Angelina ( born at 25 weeks and 2 days)

"Your body is the vessel in which you experience all life. Think about it... every single experience you have is facilitated by this mind blowing creation of your body. Be generous to it. Don't curse it."

Unknown - Submitted by Isabelle from The Peace Within the Fight

I want people to know that being tube fed doesn’t limit anyone. I’m a teen, in high school, with a great group of friends, and actively involved in extra carricular activities. We are what a tube fed teens looks like!

Ansley McCormick

It’s easy to get bummed sometimes about having three tubies. But when I look back and see how far they’ve all come, I wouldn't have it any other way.

Erica H.

The ngtube saved my sons life

Chelsee

Lukey wants the world to know that having a feeding tube doesn’t mean you’re sick or that you can’t live a normal life. He wants the world to know that thanks to his tubie, he’s a happy and HEALTHY boy, growing big and strong while he figures out this whole eating by mouth thing! He loves his tubie and so do we!

Heather M.

This is my life! Some days are hard and I just wish that I could be a typical kid and not have my feeding tube and Broviac (I am also TPN dependent) but I know that they are saving my life! I wish people would understand we are all different but we are all beautiful! I wish people would embrace each other for their differences because being different does not make us less! Spread awareness! Feeding tubes=LIFE!

Preston Sheraw (age 14)

 “the tangle is real"
 

- Mama of Hugh Hadleigh

Being tube fed as a teenager is hard because there’s a stigma surrounded by not eating. People are unaware that disease takes away the ability for people to enjoy, absorb & stay alive with food. Feeding tubes save lives.

Annaliese Holland

My son aspirates and needs a tube for liquids. Sometimes he will do anything to try and get a drink, going so far as to get into the dog's water. It’s heartbreaking, but it’s getting better with time. I find this feeding journey to be very isolating at times. Finding others who understand that journey makes a world of difference.

Janelle

Fed is best. My son has exceeded every expectation and does not let his tube stop him from achieving his goals.

Weston K.

"If standard of living is your major objective, quality of life almost never improves, but if quality of life is your number one objective, your standard of living almost always improves"

-Unknown -Submitted by Isabelle from The Peace Within the Fight

keep on pushing forward, keep advocating, remember you are doing what is best for your child. You would not be here if multiple doctors didn’t deem this necessary, you aren’t crazy, even if sometimes it may feel like you are.  

Brylynn Quinn

The world should know that tube feeding is a different way of eating but not a lesser method. We take a different route to the source- but we get there- we are fed and that's what's important.

Meaghan Glover 

Our daughter, Rowen, was born with a congenital heart defect and a condition called laryngomalacia, making bottle feeding impossible. Tube feeds have allowed her to grow and develop, which wouldn't have happened otherwise. 

Nan G.

tubes are the reason I am living they are the reason I am thriving. If I couldn’t vent from my tubes I would be a lot sicker. Embrace your tube fed child because that little survivor is stronger then most people. Feeding tubes save lives.

Annaliese Holland

Tubies can be pretty picky eaters. Don't be surprised if a smash cake ends up not being smashed.

Averi

Everyone's feeding Journey is different but it all ends the same...full belly and full diaper

Amber Rojas, Mother of Amadeus Reign

Initially, finding the right formula, rate, type of feeding tube was difficult, but knowing this is what was going to keep me alive far exceeded all the difficulties we faced. “This isn't the real nutrition your body needs, it is just to keep you alive”, the doctor said. No it has far exceeded that. My feeding tube has given me the ability to follow my dreams.

Claudia Martinez

Every family wants to do what's best for their child. God has given us even more unique, yet sometimes trying, ways to show our little Arlo just how much we love him. God has given Arlo multiple hurdles along his path of eating, breathing and developing to prove his strength to the world time and time again. We feel blessed for this for this gift and know it is shaping our family for the best.

Emily Jasinowski (Arlo's Mother and Little Birch Blogger)

Photo Cred: Spottswood Photography, LLC

My feeding tube has given me life!! Although it was an adjustment getting used to  I realized how much life it has given back to me by getting enough nutrition.. The world should know that having a feeding tube isn't embarrassing its something I embrace!

Aubrey A Winkie

The hardest part about her being tube fed, is Reagan is growing more aware of having the tube in her nose. The last time we had to change it, she screamed for 30 minutes after. It used to be so easy to change her tube out, now it makes me cry.

Mandee Defee

Never let anyone make you feel bad about how you feed your child. Be proud and honored that you are able to keep them healthy and alive.

 Gavin Spraggins

Life is a composition of moments and seconds. They all compose a melody of precious memories. Each breathe taken may not be easy, but it is for a greater purpose: living. To live is to experience the miraculous highs, and painful lows. However, one things is for sure, this thing called living is the most spectacular experience to be had. Be grateful, be hopeful, and always live for joy.

-Isabelle from The Peace Within the Fight

The world needs to know that tube feeding saves lives! It requires discipline, patience, strength, interrupted  sleep, but in the end, to hug, to hold, to watch your child live, love, grow and overcome... It is worth every minute, every mess, and every struggle.

Cheryl Macomber

We were scared at first, but tube feeding saved Mia’s life so now we love it.

Tracy Wilson

Tube fed kids are amazing! They are so brave, strong, courageous, smart, beautiful and perfect in every way. I wish people noticed them for who they are instead of how they are fed.

Andrea

It has been a beautiful fight. Still is. 

Charles Bukowki

Submitted by Lauren Farmer

Feeding tubes save lives. I want to spread awareness so my daughter can feel normal walking down the street without having hairdos of people staring and pointing at her.

Aeva

When life hands you lemons, throw them in a blender, make a smoothie and feed it to your Tubie

Kendra Woodall

BOTH of my daughters have G-Tubes. At first I was scared, it was such a big commitment for them and me. Now, I couldn't imagine life without tubes. On my worst days, I remind myself that no matter what my girls are fed, who cares how they get it? They're growing, healthy, and happy; all thanks to our tubes!

Lela & Bella

God has given Arlo multiple hurdles along his path of eating, breathing and developing to prove his strength to the world time and time again.

Emily Jasinowski (Arlo's Mother and Little Birch Blogger) Photo Credit: Spottswood Photography LLC

 At first I was embarrassed, but now I am so grateful for it.I want people to know that just because some of us need these tubes to survive, it doesn’t make us weird and people shouldn’t be so quick to judge. It makes us strong and brave!

Ashley @ashleys.fight

What I want to tell a tubie parent having a bad day- you are not alone! The kindness, compassion and understanding I have received from complete strangers who know how it feels is truely something special. I now consider some of these people my closest friends.  So reach out- we are all on this crazy ride together! 

-Amy, Mama to Evelyn 

The hardest part has been letting go of what i thought ny infant would be like. The more i let go of that idea in my mind, the more i'm able to appreciate my little baby for who he is- a sweet smiley curious baby boy, who just happens to be tube fed!

Chava Bolotin

Initially I feared Jamison having a g-tube would hold him back from enjoying the full quality of life but it never stopped him from endless giggles and smiles. To the parents on their bad days, days that I had very often remembering to find normalcy was what kept me sane. It's not a matter of how they eat, but that they are eating.

Destiny Jacobs 

Reason for cheesin while doing my feedin is my C.C. Moo Onesie.

Mr. Beans

Tube feeding is Hard! 24 Hour feeds, no breaks, hooked to a backback or a pole. Telling your child they can't share your food sucks. The day to day struggles get easier and become a routine and they aren't quite as hard. It gets better.

Jennifer Porter

For our family, tube fed meant the difference between being able to graduate the nicu and come home or staying in the hospital indefinitely while they learned to master bottle feeds. Tube fed meant our family could be together. I am grateful that my sons were given the option of feeding tubes so they could start life outside of a hopsital!

Sue Morales

Gastroparesis is a life stealing disease, but I'm not going down without a fight. Being tube fed allows me to take my life back.

Stephanie Wiseley

Our g tube saved us from a 54 day NICU stay. Our tube is the only reason we could safely come home as a family of four. It is the sole reason our baby can safely eat and grow, and I am eternally grateful for it. It’s scary at first, but just seven months after getting our tube, it is just part of life!

Devin Hays

We are forever grateful for our sons Gtube, it saved his life. Tube feeding isn't something to be afraid of or feel ashamed of, it is a miracle that has positively impacted many families lives and helped their children to thrive just like our son, Gabriel.

Shekinyah Mason

Tube feeding saved my little boy who can’t swallow safely anymore

Leonie #AliLissencephely

Always trust your gut over anyone else. Never stop searching for an answer for your child.

After the fear and uncertainty subsided, I’ve learned to appreciate the beauty and strength everyday in the face of this little angel

Danielle Beck

As a mama, my body prepared to feed my baby, but he can not suck. That is the hardest part for me as a woman.

Mamá de Francisco.

Mostly that people are afraid of the feeding tube. It is the best decision we have made so far for her health. 

Jimmie Holt, Father of Raelyn Averie

Tube feeding has saved our son's lungs from chronic aspiration. It was a terrifying and so far from what we have ever known. Looking back, it was the best decision we have ever made.

Matty

The tube is a lifeline for many kiddos. Everyone has differences and we should embrace them.

A loving mom of a tubie

To be a tubie guarantees that your child will get proper nutrition. It's not always easy; sometimes your little will be too busy to sit still, sometimes your pump just will not cooperate, but the next time your baby is weighed, you'll be so grateful.

Magnolia Grace

Remember that when you’re having a bad day to look down at your miracle, look at that button that’s providing them the nutrients their bodies wouldn’t receive otherwise. That button is a beautiful device that lets our children strive and be healthy.

Milla(Tubie) & Natalie(mom)

I had a tough time with not being able to nurse my baby but I realized that if a feeding tube is what she needs to thrive and grow then I’m all for what’s best for her. I’ve had difficult days but great days too and it’s a learning process.

Guadalupe Kridler

A feeding tube is amazing. We have traveled the world, went to the theme parks, and on many airplanes with pump in hand. People ask we answer, but we don't let it stop us!

Kim CB

Something we always tell our daughter is that she has two belly buttons. And that she has to leave it in so that we can feed her!

Allie

Stay strong... It can be a long bumpy ride but it's worth it all.. Don't let other people make you feel like you should hide a feeding tube, it's a life line why should it be hidden?

Emily's mommy

Hardest part of tube feeding is definitely replacing the tube, another difficulty is keeping her little hands off of it !

Amelia Elizabeth

There is nothing easy about tube feeding. It comes with a lot of supplies and crazy diet plans made by professionals. We become more of nurses than mom's at times.

Crystal Williams

I have been tube fed since I was a baby (first G, then ND while waiting to switch to GJ). I hate when others automatically assume that it’s negative or gross. Of course, I’d rather not need it, but without out it, I wouldn’t be here today. Being alive is a pretty great thing.

Liz Randolph

Fed is best. As long as baby is full and happy it should not be looked down upon on how they get their food. We support tube feedings

Remington

“who and what you are will be determined by you, not your circumstances.”

Unknown - Submitted by Lauren Farmer

It was hard to see him have a tube in but one day I was able to watch them put a new tube in and he barely flinched. I was so worried about it but he really didn’t mind! (Except he hated that tape mustache).

Blair Schroeder

I would love people just to ask me why evie has a tube and not to stare !

Gina

"This feeding tube saved her life and is her lifeline. It’s my absolute best friend and simultaneously, my worst enemy." 

-Lauren Wilson

my feeding tube doesn’t define me! I am still the same girl, friend, adventurous teenager as I always have been. only better now because my tube gives me a way to continue to thrive and live safely and independently! It’s nothing to be afraid of, tubes may look strange to people who have never had to deal with them before, but if you have questions just ask! 

Lauren Farmer

The NG tube was a literal life-saver for our daughter, Leah. It enabled her to gain every precious pound required for her kidney transplant. 

Julie P.

It’s not an easy life but it’s what our little one needs to be happy and healthy which then gives us parents, happiness. We do what we have to, to assure our sons lives to the fullest.

Rykers mom & dad

It may be hard but god only gives his hardest battles to his strongest soldiers.

Taylor

Just because I have a feeding tube doesn’t mean I can’t try some cake!

Ellie Henebury

The feeding tube changed my son’s life. He aspirates and was sick often with respitory issues. He is a healthy 2yr old now and is able to breath easier.

Leah

Sometimes, I can tell people are staring at my tube. I try not to let it get to me. I encourage questions, so I can educate others and show them it’s okay to be different.

Jackie M.

Getting a G-tube has allowed us to live a more normal life and more importantly outside of the hospital!

Sarah Klein

This NG tube was the vessel in which our baby was lovingly fed. It was what made it possible for him to come home from the NICU to be with his family. It is what kept his body going while he learned how to feed by mouth for the first 5 months of life.

Kassy

I would people to understand unsolicited advice is unnecessary. I hear of so many caregivers who struggle with how to respond to suggestions to make their child "just eat" when it is not that simple.

C. Alley

Fed is best no matter what that may look like. These babies are miracles, whom have to work harder than anything to just survive.

Brylynn Quinn

A feeding tube saved my baby. His health is so much better now. Some days are rough, but it's what's my best for my child. Fed is best.

Stella Kelley

Tube feeding quickly becomes the new normal. We do our best not to let it slow us down. When poles/bags are forgot, we improvise!

Averi

"You will look back on therapies, appointments, sleepless nights, tears, triumphs, milestones, equipment, ignorance, struggle, strength, and you'll say with certainty... IT WAS ABSOLUTELY WORTH IT" (Special Needs Parenting)

- Special Needs Parenting submitted by Mackenzie Bailey

The world should know that getting a feeding tube isn’t by choice. You need it to live.

Kara Osmond

Having a tubie has been a blessing with many challenges. I have learned to put my shyness aside and be the voice of my baby. I have grown to realize that the only way I can protect my baby is to advocate for him regardless if I am constantly being rejected or unheard

Missie

Our little man is Growing and Living life to the fullest, because of the feeding tube.

Lisa Mounayar

It is not desirable, ideal, convenient or easy. It is a difficult and often lengthy road. But a truly good and loving parent will do whatever is necessary to ensure their child is nourished and properly fed.

Laura Valdez

Tube fed kids are superheroes! My daughter has been through so much, but you wouldnt know it by her big smile and constant laughter.

Andrea

every child is gifted , they just unwrap their packages at different times

-Erita James

The future is worth it. All the pain. All the tears. The future is worth the fight! #gratefulformytubie

Amelia 

If you ask my 4yr old what his button is he will reply his "life button" Why you ask? Its life changing and life saving for him and he is so proud of it.

Courtney

Before I became sick I never thought I would need a feeding tube, and when the doctors told me I would die without one I was still so against it. What would people think of me? Would I get made fun of? I don’t want this thing on my face... But I’ve realized that feeding tubes save lives and don’t ever be ashamed to get yourself the nutrition that you desperately need. Feeding tubes save lives.

Anna Grace

Schedules can be hard and complicated, and going somewhere now takes a level of planning I had never imagined. All I have to do is look at my daughter's smile and it makes all the effort completely worth it.

Kimberly Soper

Before Syd got a g tube I worried constantly about her weight and nutrition. Now, I know she's getting everything she needs and she's grown so much. All of the related struggles are worth it to see her healthy and happy.

...

Editor’s Note: Read more of The Atlantic’s Winter Olympics 2018 coverage.

Shortly before getting on the ice at the Pacific Coliseum in Vancouver, Canada, during the 2010 Winter Olympics, the U.S. national champion figure skater and high-school senior Rachael Flatt was writing a paper on Pride and Prejudice for her AP English Literature class. Though it was her first time competing in the Olympics, Flatt had been training vigorously for years; she knew that every spare moment had to be put toward maintaining good grades. She had a way of overthinking her skating routines anyway, and concentrating on Jane Austen before taking to the ice was a helpful distraction. When the time to perform arrived, Flatt executed her triple toe loops and double axels without error, finishing seventh overall. On her essay, she received an A.  

“My parents told me that if my grades suffered, my skating would be postponed,” Flatt said. Though she missed three months of classes leading up to and during the Olympics, she graduated from high school on time and was admitted to Stanford. “I didn’t have much social life that year,” she recalled. Flatt continued to train up to eight hours a day while in college and graduated in four years.

Even with her superior education, Flatt struggled after retiring from skating in 2014. “Leaving a sport feels like a divorce: You’re cut wide open and have a gaping hole,” she said. But neither U.S. Figure Skating (the national body that governs the sport) nor the U.S. Olympic Committee (the entity that coordinates Olympic activities for U.S. athletes) had much to offer in the way of post-retirement support, Flatt said, emphasizing that the USOC’s mission is simply to win as many Olympic medals as possible. “Once they’ve retired, athletes can feel like they’re an afterthought,” Flatt explained. “If you don’t have an education or training to guide you, you’re kind of out of luck.”

Despite the razzle-dazzle and romance that surround the Olympic games, elite athletes competing on U.S. Olympic and Paralympic teams historically have had few educational and employment opportunities outside of their respective sport. Other nations with robust Olympic teams often provide their athletes with more substantial support: In Canada, for example, top athletes receive an annual income of up to $18,000 as well as a subsidized college education.* By contrast, the U.S. adopts a hands-off approach to its top athletes. “We [Americans] emphasize individualism and individual responsibility more than any other country in the world, so we leave it up to the athletes to figure things out for themselves,” said Jay Coakley, a sociologist and the author of Sports In Society.

Internal USOC surveys of former Olympic and elite athletes reveal their concerns about the future: 38 percent said they were mentally unprepared to end their athletic careers, only 16 percent of those still competing reported having done any planning for life once their athletic careers were over, and 43 percent of those who had retired from sports found entering the workforce difficult.

This might be changing. Unlike most of their predecessors, the cadre of U.S. Olympians now competing in Pyeongchang will have access to programs and tools to help them sort through their post-athletic options. The Athlete Career Education program, adopted by the USOC in 2013, aims to rectify some of the oversights that athletes like Flatt endured once their athletic careers ended.

Leslie Klein leads the ACE program. A former Olympic kayaker, Klein said that most athletes competing in the Olympic and Paralympic Games who go on to retire right afterwards are “absolutely not” prepared for what’s to come. That’s in part because their education experiences are “all over the map,” she said. Most of the athletes have at least the equivalent of a high-school diploma, and some have undergraduate and graduate degrees. Many athletes’ college options are determined by whether their sport is sanctioned by the National Collegiate Athletic Association, and whether higher education would provide the opportunity to compete at the highest levels (which is not true for all sports). With swimming, volleyball, and track and field, for example, college is the natural route because they can compete as students at the school. “Almost all [athletes in these sports] get a degree and go on to an elite athletic career,” Klein said, acknowledging that it may take them more than four years to complete their schooling. (Klein herself graduated from Middlebury College, where she also competed in cross-country skiing and swimming, in six years.)

But for athletes whose sports aren’t common on college campuses, or for those whose route to the elite level is outside the NCAA system—like skating, gymnastics, and ski jumping—obtaining an education requires improvisation and hustle. Access to a quality education also varies depending on all kinds of factors. Expense is one. According to Flatt, competitive skating—with all the travel and coaches and costumes and equipment—costs up to $100,000 per year, and athletes without sponsorships often must work part-time to cover expenditures. “The first thing to go is their education,” Flatt said. A sport’s culture matters, too: The skating world, for example, values academic achievement, Klein said, whereas that for boxing doesn’t. In some cases, “athletes have to pick education or sport,” she added. The family’s emphasis on academics and an athlete’s own drive to learn also affect how much education she’ll pursue.

Another difficulty for some retiring Olympic and Paralympic athletes is a lack of professional work experience. Given the hundreds of hours spent training, competing, and traveling to competitions, full-time work is impossible for most of the athletes who compete internationally, Klein said. An internal 2012 USOC poll found that almost half of all active Olympians worked, and half of these for 20 hours a week—with half again of these making less than $6,000 per year. A dearth of professional work experience and income, as well as unease about falling behind people their age, prompts some otherwise robust athletes to retire, Klein said. Some then “un-retire,” she added, because the sport is all they know.

But what’s toughest about retiring from competitive sports, according to Klein, is the emotional adjustment. “The biggest problem is the identity transformation that an athlete has to go through, from being on top of the world in their sport, with media attention, and turning around to face the real world without skills or relationships,” she said. The Olympic champion Michael Phelps’s tumultuous adjustment to life after elite swimming exemplifies the struggle; he told an audience at a mental-health conference this year that he had collapsed into depression after the Olympics, even considering suicide.

The USOC was pushed to create ACE after an internal working group concluded that athletes needed and deserved more assistance in acquiring an education and finding work. Though the USOC had offered ad hoc career and athletic programs for at least 20 years, the athletes themselves were largely unaware of them. USOC supports were “non-integrated,” and provided help only on an “as-available and as-requested basis,” the working group reported. Further, just three USOC staff were devoted to helping athletes with their educations and careers, and almost 60 percent of current or retired Olympians did not use even these staffers’ support. The report included seven broad recommendations that would establish the USOC as a leader in providing “holistic” support for athletes; the committee’s Board of Directors promptly adopted all the suggestions.

Under ACE, the USOC now provides a variety of centralized services to current and former Olympians and Paralympians who apply to and are accepted into the program: career counseling, mentoring, specialized training to help retiring athletes adjust to their new identities, sponsorship for online degree programs at the for-profit DeVry University, a two-week training program at Dartmouth’s Tuck School of Business, tuition grants, and “fellowships” with corporations in which athletes are eased into jobs like interns. Once accepted into ACE, athletes have access to a private online platform where they can connect with other Olympians and potential employers—“kind of [like] Facebook meets LinkedIn,” Klein explained. ACE also plans to offer workshops on tax preparation, public speaking, and brand management, and to host a three-day post-Olympic Games welcome-home ceremony in Washington for all current and former athletes.

“We are able to take each individual situation and work to provide an array of programs and opportunities based on need,” Klein said. Plus, she added, offering this support sends the signal to athletes that the USOC cares. So far, roughly 1,700 athletes have used ACE services, including more than 50 from this year’s Olympic team.

What limits ACE are its size and funding. It’s not clear how much money ACE receives from the USOC—a USOC representative said the organization does not release the budget of each department—but its staff is relatively small: Klein runs the program with three career coaches and two administrators. Though athletes applied for $1.6 million in college tuition grants, ACE could only afford to give out $237,000—“a big gap,” she said, between what athletes want and what ACE provides.

The athletes themselves question how helpful this new endeavor will be. Han Xiao, who heads the Athletes’ Advisory Council—a group made up of elite athletes whose purpose is to represent and safeguard their interests to the USOC—said that the resources devoted to ACE are significant but probably insufficient. And according to Xiao, the opacity surrounding ACE funding makes it impossible to evaluate its actual value to athletes.

Access to these services also is restricted. While all retired Olympians and Paralympians qualify, athletes who are currently competing need approval from their sport’s national governing body to use the ACE programs. There are 55 such bodies in all—each representing one or more of the sports played in the Olympic, Paralympic, or Pan American Games—and each body decides which of its athletes qualify for the educational and career programs. Depending on the sport, this can mean that just a fraction of competitive athletes qualify. And again, every athlete needs to apply to be considered at all for services.

Allysa Seely learned about the ACE programs a few months before competing in the 2016 Paralympics in Rio.  She went on to earn a gold medal in the triathlon, surging past the top woman during the last leg of the event, and winning by more than a minute. It was exhilarating, she said, but a little disorienting afterwards. “It’s something you train for every day for years, so when it’s over you think, ‘what’s next?’” she said. Seely attended some ACE workshops and consulted with a career coach there who helped set her up with a flexible part-time job. She’s decided to aim for the next Paralympic games, and devotes about 30 hours a week to running, swimming, cycling, lifting, and miscellaneous maintenance. When her athletic career ends, she’ll go back to ACE and use their services to go back to school to study medicine, she said: “I make a point to push myself.”  

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* This article initially stated that top athletes in Canada receive a monthly rather than annual income of up to $18,000. We regret the error.

A class of middle-schoolers in Charlotte, North Carolina, was asked to cite “four reasons why Africans made good slaves.” Nine third-grade teachers in suburban Atlanta assigned math word problems about slavery and beatings. A high school in the Los Angeles-area reenacted a slave ship—with students’ lying on the dark classroom floor, wrists taped, as staff play the role of slave ship captains. And for a lesson on Colonial America, fifth-graders at a school in northern New Jersey had to create posters advertising slave auctions.

School assignments on slavery routinely draw national headlines and scorn. Yet beyond the outraged parents and school-district apologies lies a complex and entrenched set of education challenges. A new report released by the Southern Poverty Law Center’s Teaching Tolerance project points to the widespread failure to accurately teach the hard, and nuanced, history of American slavery and enslaved people. Collectively, the report finds that slavery is mistaught, mischaracterized, sanitized, and sentimentalized—leaving students poorly educated, and contemporary issues of race and racism misunderstood.

In what it describes as the first analysis of its kind, Teaching Tolerance conducted online surveys of 1,000 American high-school seniors and more than 1,700 social-studies teachers across the country. The group also reviewed 10 commonly used U.S.-history textbooks, and examined 15 sets of state standards to assess what students know, what educators teach, what publishers include, and what standards require vis-à-vis slavery.

Among 12th-graders, only 8 percent could identify slavery as the cause of the Civil War. Fewer than one-third (32 percent) correctly named the 13th Amendment as the formal end of U.S. slavery, with a slightly higher share (35 percent) choosing the Emancipation Proclamation. And fewer than half (46 percent) identified the “Middle Passage” as the transport of enslaved Africans across the Atlantic Ocean to North America.

Maureen Costello, the director of Teaching Tolerance, said the research, conducted in 2017, revealed the urgent need for schools to do a better job of teaching slavery. “Students are being deprived of the truth about our history [and] the materials that teachers have are not particularly good,” she said. “I would hope that students would look at this and realize that they deserve to know better … and teachers need to know there are better ways to teach this [topic].”

The student results, which the report labels “dismal,” extend beyond factual errors to a failure to grasp key concepts underpinning the nature and legacy of slavery. Fewer than one-quarter (22 percent) of participating high-school seniors knew that “protections for slavery were embedded in [America’s] founding documents”—that rather than a “peculiar institution” of the South, slavery was a Constitutionally enshrined right. And fewer than four in 10 students surveyed (39 percent) understood how slavery “shaped the fundamental beliefs of Americans about race and whiteness.”

Examining the teachers’ survey results might help explain why students struggled to answer questions on American enslavement: Educators are struggling themselves. While teachers overwhelmingly (92 percent) claim they are “comfortable discussing slavery” in their classroom, their teaching practices reveal profound lapses. Only slightly more than half (52 percent) teach their students about slavery’s legal roots in the nation’s founding documents, while just 53 percent emphasize the extent of slavery outside of the antebellum South. And 54 percent teach the continuing legacy of slavery in today’s society.

Additionally, dozens of teachers rely on “simulations”—role-playing and games—to teach slavery, a method that Teaching Tolerance has warned against on the grounds that it can lead to stereotypes and oversimplification. Meanwhile, a large majority—73 percent—use “slaves” when talking about slavery in the classroom instead of “enslaved persons” (49 percent), the latter term of which has gained favor for emphasizing the humanity of those forced into bondage.

The overwhelming majority of teachers who participated in the survey (90 percent) are somehow affiliated with Teaching Tolerance and its learning materials. Costello said this indicates the problems revealed in the survey results could be much more pervasive than the findings suggest. “If anything, I think [this collection of survey respondents] is a group that’s more sensitive to issues of race, more likely to confront them in classrooms” compared to the broader teacher workforce, she explained, adding that the findings are “a silhouette of the problem.” Similarly, many of those surveyed were elementary-school teachers, which Costello said was noteworthy considering the ability of slavery education in the early grades to form the narrative—the “fake history”—that students carry through high school.

Ursula Wolfe-Rocca, a high-school U.S.-history teacher in Lake Oswego, Oregon, a Portland suburb, has encountered students’ common misconceptions—such as the belief that Abraham Lincoln freed the slaves, and that the Civil War was really about states’ rights. Her straightforward solution is assigning original documents: “Read Lincoln’s first inaugural address and you do not find a fiery abolitionist, but someone promising to enforce the fugitive slave clause; read the articles of secession, and you find striking declarations from slave states that their actions are rooted in a desire to protect [slavery].”

Still, Wolfe-Rocca echoed the report’s teacher respondents in stressing the inherent challenges in tackling the subject well. As a white teacher, she admittedly struggles with presenting an unsanitized version of slavery that doesn’t desensitize her students at Lake Oswego High School to the violence and black pain. “Kids walk into my class ‘knowing’ about slavery. But their recitation of this knowledge is dull, lifeless, and bored,” she said. “It has the feel of something memorized [and] rote, rather than internalized and meaningful.” She uses personal narratives of enslaved people to teach the ugliness and injustice of the past while being “careful to keep the rape and whipping to a minimum.”

Wolfe-Rocca aims to strike a delicate balance, but she wonders whether she’s whitewashing history: “How do we surface the realities of slavery without resorting to spectacle?” Like teachers cited in the report, she finds that exploring the true costs of slavery is difficult but essential.  

Further compounding teachers’ difficulties is the quality of textbooks and state content standards. Teaching Tolerance found that textbooks generally lacked comprehensive coverage of slavery and enslaved people—the best textbook earned a score of 70 on the project’s rubric of essential elements for bringing slavery into the classroom—and state standards were generally “timid,” focused more on abolitionists than on the everyday experiences of slavery.

Taken together, the study exposes a number of unsettling facts about slavery education in U.S. classrooms: Slavery is taught without context, prioritizing “feel good” stories over harsh realities; slavery is taught as an exclusively southern institution, masking the complicity of northern institutions and citizens in America’s slave-based economy; slavery is rarely connected to white supremacy—the ideology that justified its perpetuation; and slavery is seldom connected to the present, drawing the arc from enslavement to Jim Crow, the civil-rights movement, and the persistence of structural racism.

LaGarrett King, an assistant professor of social-studies education at the University of Missouri, served on the Teaching Tolerance advisory board that developed a framework for teaching American slavery—basically, the concepts that every graduating high-school senior should know—as part of the report’s recommendations. As a teacher educator, he said the study fills a significant void.

Students training to be teachers, especially those being educated to teach in elementary schools, know little about the history of slavery, he stated, noting that “much curriculum and teaching around racially and ethnically diverse [people] features a fun—foods and festival—approach to learning.” By contrast, King said, the framework provides a guide to delve into topics such as slavery and black history with a thorough and academically sound approach, versus teaching slavery in reductive and superficial ways.

“Can you teach slavery without it being psychologically violent to the children? The answer is no, violence will occur and is expected,” he said. “The key is the recognition of white supremacy and [of] the humanity of black people that helps aid in the complexity of the subject.”

Relatedly, the study also drew attention to teachers who struggle to have open and honest conversations in mixed-race classrooms about the atrocities of slavery. Antoinette Dempsey-Waters, a black social-studies educator at Wakefield High School in Arlington, Virginia, said she relies on autobiographies to give a vivid picture of enslavement that helps all students in her highly diverse school “walk away with the knowledge of the evil of slavery,” as they come to “understand and respect … the fight for freedom” waged by enslaved people.

Notably, Teaching Tolerance recommends using primary sources and original historical materials to improve instruction, and making textbooks better to reflect a more accurate and inclusive view of slavery.

“It’s clear that the United States is still struggling with how to talk about the history of slavery and its aftermath,” the report concludes. “The front lines of this struggle are in schools, as teachers do the hard work of explaining this country’s history and helping students to understand how the present relates to the past.”

As a freshman on the Michigan State University softball team, Tiffany Thomas Lopez went to Larry Nassar, the school sports therapist, for back pain. Nassar’s “special treatment”—a technique he’s used on many of his patients, including U.S. Olympic gymnasts—involved him inserting his fingers into her vagina. Thomas Lopez thought something seemed off. But when she reported the behavior to Destiny Teachnor-Hauk, an MSU athletic trainer, she said Teachnor-Hauk told her not to worry: This was “actual medical treatment.”

“She brushed me off, and made it seem like I was crazy,” Thomas Lopez told ESPN.

Last week, almost 100 women shared similar stories about Larry Nassar in a county courtroom in Lansing, Michigan. Many of them were MSU students—and, according to a recent Detroit News investigation, at least six reported the abuse to university administrators. All said they received versions of the same response: “He’s an Olympic doctor.” “No way.” You “must be misunderstanding what was going on.” A 2014 Title IX investigation reached a similar conclusion: Nassar’s conduct “was not of a sexual nature.” Kristine Moore, the university’s Title IX investigator, said the women likely did not understand the “nuanced difference” between proper medical procedure and sexual abuse.

We now know that investigation failed to uncover an extensive history of abuse. Last November, Nassar pleaded guilty to 10 counts of first-degree criminal sexual misconduct. He’s been sentenced to 60 years in prison for child pornography—with a harsher sentence likely to follow in the wake of his sentencing hearings this month. The Nassar case is now being called “the largest sexual-abuse scandal in the history of sports,” dwarfing even the Sandusky case at Pennsylvania State University and the Art Briles case at Baylor University. Students claim that at least 14 MSU officials, including University President Lou Anna K. Simon, knew about it and didn’t take action.

“The testimony of Nassar's victims this week made many of us, including me, listen to the survivors and the community in a different way,” Simon wrote in a memo to the MSU community Friday. She said the school has “taken a hard look at ourselves to learn from what happened.” In that spirit, she announced that MSU is creating a $10 million fund to help survivors. The MSU Board of Trustees has also asked Michigan Attorney General Bill Schuette to conduct his own review of the Nassar case.

In a letter to Schuette, the attorney for MSU Patrick Fitzgerald said evidence would show that, at the time, no MSU official believed Nassar committed sexual abuse. Over two decades, students say they told MSU administrators, explicitly and more than once, that Nassar was sexually abusing them during medical appointments. They listened to women describe the rubbing back and forth, the digital penetration that sometimes lasted 15 minutes, the ungloved hands. But when those women said there was a problem—that this didn’t feel right, that they were hurt—the administrators didn’t believe them.

Pain is inherently subjective—it’s impossible to see exactly how much someone is hurting. In the absence of clear physical indicators like a bleeding wound or a broken bone, the degree to which it’s taken seriously correlates with the degree to which the patient is trusted. And women are trusted less than men. With the same symptoms, men are more likely than women to be prescribed painkillers, while women are more likely to go home with sedatives. One study found that women waited an average of 65 minutes in the emergency room to receive analgesics. For men, the average wait was 16 minutes shorter.

In a 2015 Atlantic essay, Joe Fassler describes how his wife waited in the ER in excruciating pain for almost two hours before someone gave her a medical exam. When asked to respond, female readers shared similar stories. “I’ve had (male) doctors suggest that my pain is just stress,” wrote one reader who eventually learned she had chronic pancreatitis. “He said all I needed was a bubble bath and a good rubdown.” “The Girl Who Cried Pain,” a commonly cited 2001 study, concludes that women are “more likely to have their pain reports discounted as ‘emotional’ or ‘psychogenic’ and, therefore, ‘not real.’”

“Because women are more likely to share more of their emotions when communicating their experience of pain, doctors may view their pain reports as more psychologically based. They view them a little suspiciously,” said Diane Hoffmann, a professor of health-care law at the University of Maryland and a coauthor of the study.

Women have long been viewed as excessively emotional. Take, for example, the origins of “hysteria”—a word we now associate with emotional excess and coming unhinged. In the fifth century BC, Hippocrates, the Greek physician often called the Father of Medicine, coined the term to refer to a disease contracted exclusively by women in which, disoriented from a lack of sex, the uterus would detach and move freely around the body. This common malady would bring on anxiety, convulsions, and the illusion of being suffocated: intense physical distress that mostly manifested itself inside a woman’s head. While the definition of hysteria evolved over time—hysterical neurosis was removed from the DSM-III in 1980—the word “hysterical” is still often associated with women. As is the word “hypochondriac.” Nineteenth- and early 20th-century literature is rife with swooning women, suffering from dramatic fainting spells for no apparent reason.

Women, more so than men, have to prove there is something wrong with their bodies. Without tangible evidence, women fear proving the stereotypes right—of appearing weak, excessively dramatic. When she was abused by Nassar, Jennifer Rood-Bedford, a former MSU volleyball player, remembers thinking that she didn’t want to seem childish. She said she’d lay there on his table, wondering, “Is this okay? This doesn’t seem right.” She told herself, “Don’t be a baby.”

It’s not just that female patients aren’t trusted enough—but also that doctors play a special, godlike role in society, and are trusted too much. “From the time we are little, we are taught to trust doctors,” Aly Raisman, a gold medalist on the U.S. Olympic gymnastics team, wrote in a recent statement directed to Nassar. Professional and Division I athletes, in particular, depend on doctors for their livelihoods. Raisman said she felt guilty for thinking badly of someone in his position. “I wouldn’t allow myself to believe the problem was you.”

As MSU students reported the Nassar abuse, their pain was questioned at multiple levels: first, by the administrators they confided in, and second, by the Title IX investigators deployed to ensure the situation had been handled correctly. It wasn’t until the first allegations against Nassar became public in the summer of 2016 that the university fired him. While a few administrators who knew about the abuse have been suspended or asked to resign, many, including Simon, have yet to face any official repercussions from Michigan State.

When the 98 victims gathered at the sentencing hearing last week, they created a powerful antidote to the gaslighting so many of them have experienced. Both in the courtroom and on social media, the women recognized the depth of each other’s pain. After decades of being made to feel like they were crazy, together, they made it clear they’d known exactly what they were talking about all along.

Alright, we’ve all been on our New Year’s diets for two weeks now, so it’s time for a little splurge, right? I mean, it’s all about balance. If you’re going to give yourself one splurge, you need it to be this Tomato Basil No Knead Bread! I’m serious. It’s divine.

This bread has a wonderfully subtle tangy flavor thanks to a handful of sun dried tomatoes and a little tomato past dissolved into the water. It’s the perfect easy bread for serving with your hearty winter soups and stews. This recipe does make a rather large loaf, but if you don’t think you can eat it all up within a few days, I suggest slicing it in half (after it has completely cooled), popping half of it into a freezer bag, and storing it in your freezer until you need more bread. This bread freezes beautifully and thaws quickly at room temperature.

I decided to do a “quick” no knead bread this time, meaning it only rises for about 2 hours instead of 12-18. I did this because A) I was hungry and B) I added shredded mozzarella to my tomato basil no knead bread and I didn’t like the idea of that cheese sitting out at room temperature for that long. In the end the cheese just kind of melted into the dough and disappeared, so I’m marking the cheese as entirely optional. So, if you prefer to do a long dough ferment to get that really deep flavor, you can, just make sure that you reduce the amount of yeast in the bread to 1/4 tsp instead of 2 tsp. The reason the long ferment doughs use such little yeast is because as the dough sits out for 12-18 hours the yeast has time to reproduce and ends up with the same yeast power as if you had done a short rise with 2 tsp yeast.

Using a Dutch oven produces the BEST results with this bread because it holds in steam as it bakes, which is what gives that crust it’s amazing crispy, crackle-y qualities. If you don’t have a Dutch oven it can be baked on a baking sheet, but it may expand more in an outward direction rather than up and the crust will have a slightly different texture.

Tomato Basil No Knead Bread

Step by Step Photos

Chop about 1/3 cup sun dried tomatoes into smaller pieces, so you’ll get little bits all throughout the bread. I suggest the dry pack sun dried tomatoes rather than oil pack for this bread.

Add 3 cups all-purpose flour to a large bowl along with 2 tsp instant or bread machine yeast, 1/2 Tbsp salt, 1/2 Tbsp dried basil, and the chopped sun dried tomatoes. Stir until everything is evenly mixed.

Stir in 4oz. mozzarella (shredded). The mozzarella is optional, and honestly it just kind of melted into the bread and I didn’t notice it much in the final product. 

Stir one tablespoon tomato paste into 1.5 cups warm water. Since I rarely use an entire 6oz. can of tomato paste at one time, I freeze it in one tablespoon portions just for occasions like this. :) Read more about how I freeze tomato paste here.

Pour the tomato water into the flour mixture. Because of slight differences in moisture content of flour or variations in measuring, you may need to use slightly more or less water each time, so I suggest going by the texture of the dough and not an exact measurement here. See the next photo for details on what you want the dough to look/feel like.

You want the dough to be fairly wet, sticky, and shaggy. It shouldn’t be so wet that it is glossy or slimy, but definitely too wet to handle with your hands. Also, it shouldn’t be so dry that there is dry flour left on the bottom of the bowl or on the surface of the dough. Cover the bowl loosely and let it rise for one hour, or until it’s double in size.

After it has risen for about an hour the flour will have soaked up some of that water so it won’t be quite as sticky (although still more sticky than a traditional kneaded bread dough). Sprinkle some flour on top of the dough and scrape it away from the sides of the bowl with your hand. 

Turn the dough out onto a well floured surface and fold it over on itself 5-6 times, or just until it feels smooth. It should still be a very loose dough. Place the ball of dough on a piece of parchment paper and let it rise for another 30 minutes. Because the dough is so loose, it will rise more out than up, and that’s okay.

While the dough is rising, place your Dutch oven in the oven and begin to preheat it to 425ºF. Using a Dutch oven for this bread really makes a big difference in the texture of the crust and helps the dough be more of a dome shape, but if you don’t have one you can still cook the bread on a baking sheet.

When the dough has risen for 30 minutes and the oven and Dutch oven are fully preheated, CAREFULLY remove the Dutch oven from the oven, take off its lid, and then lift the entire bread dough and parchment paper into the Dutch oven. Put the lid back on the Dutch oven, put it all back into the hot oven, and bake for 30 minutes.

After 30 minutes of baking with the lid, it will look like this. Now remove the lid, return it to the oven, and bake for another 15-20 minutes to let the crust fully brown…

And at that point it should be absolutely GORGEOUS. I mean seriously. Look at that. 😍 Lift the whole thing out of the Dutch oven and allow it to cool before slicing.

There really is “no knead” for any other type of bread. Har-har-har. 🙈

The post Tomato Basil No Knead Bread appeared first on Budget Bytes.

Above are some of the signs that stood out to me during the Women’s March here in NYC yesterday. I marched with the remarkable Vicki Saunders, wearing my big red heart from last year.

It felt powerful and so poignant to me that I marched with Vicki, founder of SheEO, as she is single handedly changing the landscape for women entrepreneurs, but much more than that, creating a global support and mentor eco-system built on radical generosity. I am hopeful for the future my daughter is growing into. A world where women support women and where women will eventually get equal rights and respect. We will get there!

Interested in Vicki’s work? Watch her CreativeMornings talk.

Having an infant and now toddler with TPN presents many challenges.  One of the most stressful can be keeping her line from pulling.  Ask any mom with a toddler who moves and gets TPN and they will tell you its rough! After 7 line breaks in 13 months we knew something needed to change.  We started using Gus Gear Central Line Wrap and it made a  positive difference in our life.  Not only has it reduced stress, it has increased Addie's safety and make sure she is better protected.  I wanted to share why we love Gus and Gear and why every child with a central line should have one...or a few! 

1. Decreases the Possibility of Line Breakage

 Prior to getting Gus Gear, we averaged a tear in her line about every other month.  In one year, she had 7 line repairs so we knew we needed to do something differently.  Most people would think she got the tears from pulling at the line, but only one tear happened because of that.  Toddlers are busy and kids move.  They are not meant to be connected to a spaghetti sized cord coming out from a vein that goes into their heart.  Most of her tears came from just general life and pulling on the line.  Gus Gear can help prevent these types of tears and the snaps keep the line in place.  When it pulls, it pulls on the clips, which holds it in place.  In the 4 months since we've had Gus Gear, she has not had a single repair! 

2. Safer When Handling Line

When you access your child's central line, it feels a little bit like Russian roulette.  Can you do all you need to do while keeping everything sterile, clean, keep her safe, and keep her hands away from pulling??!?  Having the line clipped into the wrap while accessing the line makes it so much safer.  I never realized how stressed and worried I was about it until we got the Gus Gear.   While you are connecting, disconnecting, changing a cap, etc. the line is clipped in, which can prevent it from tugging.  

3. Use When Infusing and Disconnected

One of things I like about it is you can keep it on when infusing and when you are not.  You do not need to take it on and off and add another step to your connection/disconnection process.  It also protects the line when its connected AND when it is not.  

4.Decreases Dressing Changes

Before Gus Gear, Addie would need reinforcement on her dressing mid week and sometimes a new dressing.  With Gus Gear, an awesome side effect is that it protects the dressing, and keeps the wear down to a minimum.  Most weeks, her dressing looks perfect even when it is time for a dressing change.  

5. Prevented Line from Pulling Out 

Recently, Adeline took a tumble out of her crib.  More like a dive.  She claims she "faw offuh cwib", but really she climbed.  I was at my parents and while my mom was worried about her breaking her neck, I was worried about her line.  I ran upstairs, ignoring the bump on her head, and got her undressed as quick as I could already planning my visit to the emergency room in my head.  The wrap did it's job, her line stayed secure.  

6. Keeps Line Out of Her Hands

Instead of her line hanging directly in front of her, right near her heart, the central line wrap puts it it off to the side.  It helps keep it away from those wild yummy hands.  The Gus Gear literally covers the line, which keeps it out of sight and out of hands.  

7. Easy Access to Line While Wearing

While she is wearing, her line is easily accessed by a flap on the front of her wrap.  The velcro is some crazy kind, and nothing sticks to it besides the other velcro.  There are not fuzzies or hairs, its kind of amazing.  

8, Protects from Small Spills

The wrap is not meant to keep the line from getting wet or protecting it from spills, but it does.  If she throws up or has a poop explosion, the wrap is an extra layer of coverage that keeps the actual dressing from getting wet or soiled.  Because our protocol is, if it gets wet or soiled, you change the dressing.  And we all know what a pain in the butt that is!   That being said, I would recommend getting at least two wraps, for this exact reason.  

9. Love the Material on Her Skin

It is made with soft supplex material, which I love.  I had to google what supplex fabric meant, but its water repellent, it has the feel of cotton, with a soft smooth touch, and Nylon's high strength and durability. It reminds me of a really high quality work out fabric and is breathable, lightweight, and water repellant. 

10, Made with Room to Grow

The wrap allows for 2-3 inches of growth around the back and has adjustable shoulder straps, so this will grow with your child.  Addie will fit in her Gus Gear Wraps for a few years.  I love products like this that will last over time and I do not need to purchase every year.  

We have a discount code!

We are so excited to be able to provide you guys a discount code to use on your purchase of Gus Gear and use code ADDIE10 for 10% off your purchase.  You can get your first Gus Gear here! 

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Message from Sarah Palya, Founder & CEO

 

I am Sarah, mother of 2 and founder of Gus Gear. When my son, began his medical journey in 2007, I had no idea what was in store for us! The addition of a GJ tube, cecostomy, ostomy, and central line all happened over time. I had to find a way to keep Gus safe and so Gus Gear was born.

The biggest challenge I faced was his central line because that is a life and death issue. I created the central line wrap to keep his line locked down and safe not only from accidental pulls, but from his fingers as well! So much more than simply a cover, this wrap is quite literally a life saver – and has been for my son for many years. I’ve seen first-hand how it saves his central line from breaks and have heard from hundreds of customers that it has done the same for them.  We currently have 9 hospitals buying directly from us for their patients to save their precious central lines both in and out of the hospital. I encourage all our customers to mention it to their treatment team so that together, we can save more lines!

Gus Gear’s product line includes central line wraps, ostomy pouch covers, line covers, and covers for other items like Farrell bags and urine bags. Everything Gus Gear makes has been used by us daily at one time or another. In this way, I have been able to personally critique and improve each cover to make it not only attractive, but functional. Each item is hand crafted with attention to detail. Gus Gear is constructed with quality fabrics that, when properly cared for, will hold up over time.

Gus Gear’s mission is to increase patient’s quality of life, allowing them to live their best life!

What Else is Addie Wearing? 

Her headband is made by our favorite KRZA and her blanket is from Hello Snuggles which is the softest. 

Lets get cozy

 

 

Dear Polly,

Why am I so lazy? As long as I can remember, I’ve always done as little as possible to still get the job done, to still get the A, to get the extra credit and be the teacher’s pet. I have always procrastinated everything from homework, cleaning, and...More »

The fish market at the Wharf is the last remnant of a rapidly changing neighborhood undergoing a $3 billion redevelopment. Around 20 restaurants and shops are opening, with more grand openings and celebrations planned for other businesses well into next year. Opened in 1805, Maine Avenue Fish Market is the oldest continuously operating open-air fish market in the U.S.

I understand that most people, normal people, can outline phases of their lives through jobs or photo albums or even where they lived; I apparently can do it through endive salads I was obsessed with at the time. In 2005, there was one from Nigella Lawson in the New York Times with toasted hazelnuts, grain mustard, lime and orange and sesame oil. My husband and I were a relatively new thing at the time and he wasn’t terribly into endive but he ate it politely for weeks and weeks, and eventually came around, or caved. Same thing, right?

Read more »

An essay about raising a teen that was then also annotated by the teen who the essay is about: Raising a Teenage Daughter.

I love the idea of this format and would love to see more of this, about other topics.

30-year-old Seattle native, Lauren Ko, is a whiz at creating beautifully sculpted pies.

We’re all pros already.
1) We show up every day
2) We show up no matter what
3) We stay on the job all day
4) We are committed over the long haul
5) The stakes for us are high and real
6) We accept remuneration for our labor
7) We do not overidentify with our jobs
8) We master the technique of our jobs
9) We have a sense of humor about our jobs
10) We receive praise or blame in the real world
― Steven Pressfield

From the book: The War of Art

Thank you Alexandra Franzen for these 100+ questions to ask your friends, family and dinner companions. She shared these because the U.S. is having Thanksgiving family gatherings coming up this week. These conversation starters come in handy anytime:

Are there any household chores you secretly enjoy? Which ones — and why?
Are there any laws or social rules that completely baffle you?
Are you a starter or a finisher?
Are you afraid of flying in airplanes? (How come?)
Are you living your life purpose — or still searching?
Are you useful in a crisis?
Can you tell when someone is lying?
Can you tell when someone is telling the truth?
Do you believe in magic? When have you felt it?
Do you believe that everyone deserves forgiveness?
Do you believe that people deserve to be happy?
Do you ever hunt for answers or omens in dreams?
Do you ever yearn for your life, before Facebook?
Do you have a morning ritual?
Do you have any habits you wish you could erase?
Do you have any irrational fears?
Do you have any personal rituals for the end of the year?
Do you have any physical features that you try to cloak or hide? How come?
Do you like to be saved — or do the saving?
Do you secretly miss Polaroid cameras?
Do you think everyone has the capacity to be a leader?
Do you think we should live like we’re dying?
Do you think we’re designed for monogamy? (Why or why not?)
Do you think you’re currently operating at 100% capacity?
Ever fantasize about being in a rock band? What would your group be called?
Has a teacher ever changed your life? How so?
Have you ever (actually) kept a New Year’s Resolution?
Have you ever been genuinely afraid for your physical safety?
Have you ever dreamed about starting a business? (Or if you’ve already got one — a new business?)
Have you ever fantasized about changing your first name? To what?
Have you ever fantasized about writing an advice column? What’s the first question you’d like to answer?
Have you ever had a psychic reading? Did you believe it? Was it accurate?
Have you ever had to make a public apology? (How come?)
Have you ever met one of your heroes?
Have you ever met someone who was genuinely evil?
Have you ever pushed your body further than you dreamed possible?
Have you ever screamed at someone? (How come?)
Have you ever set two friends up on a date? (How did it go?)
Have you ever stolen anything? (Money, candy, hearts, time?)
Have you ever unplugged from the Internet for more than a week?
Have you ever won an award? What was it for?
How do you engage with panhandlers on the street?
How do you reign in self-critical voices?
How long can you go without checking your emails or texts?
How would you fix the economy?
If a mysterious benefactor wrote you a check for $5,000 and said, “Help me solve a problem — any problem!” … what would you do with him or her?
If social media didn’t exist, how would your life be different?
If you could choose your own life obstacles, would you keep the ones you have?
If you could custom blend a perfume or cologne, what would it include?
If you could enroll in a PhD program, with your tuition paid in full by a mysterious benefactor, what would you study — and why?
If you could have tea with one fictional character, who would it be?
If you could master any instrument on earth, what would it be?
If you could save one endangered species from extinction, which would you choose?
If you could sit down with your 15-year old self, what would you tell him or her?
If you had an extra $100 to spend on yourself every week, what would you do?
If you were heading out on a road trip right this minute, what would you pack?
If you were searching through an online dating website, what’s the #1 quality / trait that would attract you to someone’s profile?
If you were to die three hours from now, what would you regret most?
If you wrote romance novels or erotic fiction, what would your “pen name” be?
Is there something that people consistently ask you for help with? What is it?
Is war a necessary evil?
What are you an expert on? Is it because of training, lived experience, or both?
What are you bored of?
What are you devoted to creating, in the New Year?
What are you freakishly good at?
What are you starving for?
What do you value most: free time, recognition, or money?
What is your spirit animal?
What was the best kiss of your entire life?
What was the best part of your day, so far?
What was the most agonizing hour of your life?
What was your proudest moment from the past twelve months?
What was your very first job?
What was your worst haircut / hairstyle of all time?
What’s going to be carved on your (hypothetical) tombstone?
What’s in your fridge, right this moment?
What’s in your pocket (or purse, or man-purse) right now?
What’s one dream that you’ve tucked away for the moment? How come?
What’s one mistake you keep repeating (and repeating)?
What’s one thing you’re deeply proud of — but would never put on your résumé?
What’s something you’ve tried, that you’ll never, ever try again?
What’s the best birthday cake you ever ate?
What’s the best compliment you’ve ever received?
What’s the hardest thing you ever had to write — and why?
What’s the last book that you couldn’t put down?
What’s the most out-of-character choice you’ve ever made?
What’s the strangest date you’ve ever been on?
What’s the title of your future memoir?
What’s the worst piece of advice you’ve ever been given?
What’s your definition of an ideal houseguest?
What’s your guiltiest of guilty pleasures?
What’s your most urgent priority for the rest of the year?
What’s your personal anthem or theme song?
What’s your recipe for recuperating from extreme heartbreak?
When was the last time you astonished yourself?
When was the last time you got stuck in a rut? How did you get out of it?
When was the last time you saw an animal in the wild?
When you see peers / competitors getting things you want, how do you react?
Where & when do you get your best ideas?
Who is the last person that deeply disappointed you? (What happened?)
Would you consider yourself an introvert, extrovert, or ambivert?
Would you like to write a book? (About what?)
Would you rather be a lonely genius, or a sociable idiot?
Would you rather have a live-in massage therapist, or a live-in chef?
Would you rather have an extra $200 a day, or an extra 2 hours a day?
And of course…
What are you most grateful for, right now, in this moment?

Today is #worldprematurityday and just typing that hashtag made me start to cry.  It's so emotional to reflect back on Adeline's birth, the struggle, the triumphs, and her journey that didn't end when we left the NICU.  

“Premature birth is the leading cause of death in children under the age of five worldwide. Babies born too early may have more health issues than babies born on time, and may face long-term health problems that affect the brain, the lungs, hearing or vision. ”

World Prematurity Day, on November 17, raises awareness of this serious health crisis. Throughout this month we have tried to draw attention to this crisis by sharing our story, other family's stories, information about preemie babies, and through our Grateful Guts project.  Now, we are so excited to be partnering with Pampers who is giving back to this community and to the March of Dimes with through their Pampers #LittlestFighters Campaign.  Just in time for Prematurity Awareness Month, Pampers has introduced the first-ever flat diaper, specifically designed for premature babies. Sometimes a traditional diaper doesn't work for the tiny babies in the NICU so Pampers created a diaper with no elastic or tape which could help babies with jaundice, skin breakdown, abdominal defects, surgeries, and extremely low birth weight.  

“Preterm birth is a national health crisis. 1 in 10 babies are born premature and this statistic has continued to increase for the second year in a row.”

What is pamper's Doing for Preemies? 

In honor of World Prematurity month, they're donating a box of diapers to every NICU across the country and up to $300,000 to the March of Dimes.

What can you do? 

1. Share Your Story Share your story about the first time you were inspired by your baby’s fighting spirit on Facebook, Twitter, or Instagram on November 17th. Each time the #LittlestFighters hashtag is used, Pampers will donate $5 to the March of Dimes.  Also make sure to tag @PampersUS in your post. 
2. Social Media Awareness is another way to get involved. You can change your profile pictures to a special World Prematurity Day themed version on Facebook and Twitter to help raise awareness.  Be sure to post photos to social media with the hashtag #worldprematurityday.
3. Wear Purple.  That includes wearing purple to represent the March of Dimes and prematurity awareness, lighting your home or office purple and getting creative to inspire others to raise awareness by going purple.
4. Donate to the March of Dimes.

“The U.S. preterm birth rate rose from 2 percent to 9.8 percent in 2016 — equating to approximately 8,000 additional babies being born premature. ”

I am sharing one of my stories on Instagram and Facebook about the first time I was inspired by my #LittlestFighter and I hope you do the same so we can raise some monies!!! 

These images below can also be used to for your social media and tag us if you can!!

I LOVE Jourdan and her family.  We met via social media over two years ago when our kids were born prematurely about one month apart.  We connected immediately, text each other, email, DM, and are so supportive of each other's journey.  She is one of my dearest preemie Mama friends, understands how I feel more than most,  and I only wish we lived closer.   Jourdan's story to motherhood is quite complex as she had her babies via embryo adoption and then the gift of surrogacy from a good friend.  As if their journey to pregnancy was not complex enough, they had twins, and at 23 weeks!! The odds were stacked against this family to have children and against these babies to survive.  But just like their parents, Cadence Grace and Jackson Brave defied all the odds and continue to do so.  You need to be following this family on Instagram and Facebook as they openly chronicle their unconventional journey to parenthood and their life after the NICU. Something that is often reported throughout the preemie community and even media is that the premature baby "overcame" their early birth and are "completely fine" and you "would never know they were born prematurely" !  But for my family and Jourdan's family. that is not the case.  Life after the NICU has been a struggle, with setbacks, successes, and a lot of hard work.  She felt this was a topic worth talking about and although awkward and tough, it needs to be said. Before writing, Jourdan interviewed up to 50 other preemie mamas to learn more about the biggest struggles they had and how they would have liked to have been supported.  Some of the quotes from these preemie Mama's are scattered throughout the article below. Thank your Jourdan for the time and effort you put in this piece and we are honored you wrote for us.  - Stephanie

What?! Doesn't preemie life end the day the baby graduates from the NICU and goes home?  Doesn't preemie life end once the baby outgrows "preemie" size clothes and grows into the "newborn" size? For those parenting preemies, especially micro-preemies (those born under 1 lb 12 ounces or younger than 26 weeks gestation), the event of premature birth has lingering effects which may last months, years, or a lifetime.

The purpose of this article is not to gain pity, sympathy, or vent about my personal obstacles. My hope is to educate our non-preemie community about what support is useful and to provide preemie families with the comfort of hearing, “You are not alone.” NICU (neonatal intensive care unit) parents have a deep appreciation for the life of their child, so we are hesitant to complain about our obstacles. During my children’s 98 day NICU stay, I witnessed three babies near me pass away one by one. Those vivid memories haunt me every day and make me realize just how blessed and lucky we were to bring our babies home.

“Life after a long NICU stay can be isolating and lonely.”

However, it is important to share that life after a long NICU stay can be isolating and lonely. Parents are busy and exhausted tending to the special needs of the preemie at home. We typically reduce public exposure to prevent sickness or complications and we often are struggling from PTSD (Post-Traumatic Stress Disorder), anxiety, and depression, which create isolation and loneliness. An unexpected lingering effect is an unwanted distance and separation from some of our most cherished relationships. Why? Because parents, (myself included), struggling with these mental health symptoms, are not the best at nurturing the relationships outside of the constant demands of their high needs child(ren). Additionally, the relationships around them are often unable to relate to or understand what they are going through. This distance is tragic and my biggest regret looking back on my own journey.

But how do you overcome these struggles when forecasting them is practically impossible for all parties involved? No one plans in advance to have a preemie or micro-preemie child. No one is prepared for pre-term labor and NICU life. My hope is that by bringing awareness to these obstacles, I can help others navigate the unplanned journey of raising preemies at home after the NICU. Here are 7 challenges we (preemies) face every day. A disclaimer is that these experiences may not be true for all preemie parents, however, I have interviewed over 50 preemie parents before writing this article and most all of them, especially micro-preemie parents, related to 6 or 7 of the challenges below.

7 Lingering Obstacles Preemie Face After the NICU

1. Our immune systems and lungs are still weak

Most of us have been diagnosed with Chronic Lung Disease among other diagnoses. When we pick up a simple cold (rhinovirus) or flu (influenza) it often leads to RSV (Respiratory Syncytial Virus) or other serious infections. These can drag on for weeks or even months, leading to hospitalizations and set-backs to our progress. This can cause delays with weight gain, developmental milestones, and our parents’ ability to work, sleep, care for other children, etc. When these hospitalizations occur it can often split up our families, literally causing couples to sleep in different locations and parents to be away from other children in the household. 

“Due to their weak immune systems and breathing challenges while in the NICU, we kept a very low profile until flu season was over (which was several months). We didn’t go to stores, places with crowds, or large family gatherings. Several people close to us said that we were overreacting by keeping them so protected (especially during the holidays). That is probably one of the worst things you can say to a preemie parent. As parents, our main goal is to protect our children.

”

2. We are still small for our age

For the first two years of preemie life, doctors assess our growth on a chart adjusted for our corrected gestational age. (For example: my twins were due January 14th 2016, but born September 23rd 2015 (four months early) so when they were 12 months old, we assessed their growth compared to children at eight months of age, adjusting for the four months of prematurity). Growth in the early months directly correlates with brain development so this is a major stress point for preemie families. Not all preemies catch up by the age of two. My children are 25 months old, wearing 12 month clothing. One of the mothers that was interviewed mentioned that her nine-year-old was wearing a size 6. Our parents work very hard to keep us nurtured, yet stunted growth can be a lingering obstacle.

“(One of my biggest challenges after the NICU was) trying to get my daughter to gain weight while also encouraging learning to eat by mouth, stimulating hunger, and trying to get a lot of calories without the bulk since she can’t handle to much volume with out projectile puking everything back up.””

3. We are developmentally delayed

The adjusted gestational age mentioned in obstacle two also affects our social and developmental milestones. Additional hospitalizations after the NICU and time spent combating serious medical conditions (rather than exploring and playing the way babies should) causes further set-backs. (For example: when my twins turned one they still were not able to sit up unassisted. Now they are two and my daughter doesn’t walk and my son has only found 5 words.) Countless hours of dedicated speech therapy, physical therapy and occupational therapy are often involved which makes these delays disheartening to parents who work so hard towards basic goals.

“Certain beeps still can send me into a blind panic. They remind me of the alarms for when my daughter flatlined on all monitors. Or when they stopped breathing.”

4.)    We have lots of appointments.

A few months after our homecoming from the NICU I counted 21 appointments on our calendar in a one month period. This is time away from work, rest, self-care, play dates, normal family life, socialization with friends, etc. Some of the specialists we visited after the NICU included: pediatrician, dietician, optometrist, pulmonologist, gastroenterologist, craniofacial, developmental specialist, speech therapist, early intervention, feeding therapist, orthotics, occupational therapist, physical therapist, endocrinologist, audiology, dermatologist and cardiologist. 

“And because she isn’t small anymore people seem confused when I tell them she was a preemie and needs some extra time to do things.”

5.)    We have lots of equipment.

Parents of preemies, especially micro-preemies, must learn nursing skills as they leave the 24/7 support of a full NICU medical team and come home. Some of this equipment may include: oxygen generators, feeding pumps and tubes, heart monitors, oxygen saturation monitors, nebulizers, suction machines, tracheas, ankle braces, helmets, medical walkers, wheelchairs and more. Simple pleasures like walking around with the baby in a carrier become difficult when you have to drag oxygen cords and feeding pumps around with you. For months my spouse and I couldn’t cross paths when holding and feeding babies without getting all the wires and cords tangled. At one point I had to request a handicap permit because I could not carry all the equipment in and out of doctor’s offices on my own without major difficulties. The equipment makes leaving the house or sometimes even one room in the house a challenging hurdle.

“To this day I never really consider her to have been born, only to have been delivered. The overwhelming feeling of her being taken from my body, from her nourishing life force, to battle alone against the odds still rattles me.”

6.)    Our parents have PTSD.

       Post-Traumatic Stress Disorder from the NICU days when parents watched their baby fight for their life is a common and lasting effect. Anxiety and depression are common, leading to seclusion and loneliness. Certain sounds like beeping alarms and specific smells still trigger awful internal reactions for many. Parents are mourning the loss of a normal full-term pregnancy, the loss of a normal delivery, and the loss of a healthy baby and all the hopes and dreams they had of that process.

“I have really struggled the past few months with flashbacks, visions of the boys dying and depression over how nothing was how I wanted it.”

7.) We have special diets  & feeding needs

In most cases special diets (such as: high calorie, reflux-sensitive, thickened liquids) and special feeding needs are a daily obstacle. My children are a result of the selfless gift of surrogacy and embryo adoption, so I obviously never produced breast milk. However, many interviewed mothers mentioned that breast feeding may not be possible and pumping is challenging under extreme stress. Many preemies struggle with gastrointestinal issues, aspiration, reflux, and/or oral aversion, making feeding particularly challenging. Struggles with weight gain in addition to feeding issues are a stressful combination.

“To those preemie parents facing these obstacles, please know you are not alone. ”

It is likely that none of the parents in your immediate circle are able to relate to most of these challenges, but the preemie community is out there and I encourage you to find, reach out, and connect with them. It’s important not to walk this journey alone. Although it can be uncomfortable, please take the time to educate your friends, family and immediate support system about the unique challenges you face. Most likely, they want to support you but they just don’t know how. Use this article as a resource!

“To those non-preemie parents, thank you for taking the time to read this article! ”

Thank you for making an effort to become aware and educated about the challenges of those around you. Your friendship and sensitivity towards the preemie families around you is priceless and cherished. What can you do to help?

 

An often undiscovered treasure is that we have an astonishing story to tell. Most that are willing to listen will come out believing in miracles and feel changed by our story. I sincerely view my abrupt intro to motherhood as an honor. I have witnessed a miracle take place in slow motion right before my eyes. I began bonding with my adopted children months before their due date. I would not wish pre-term birth on anyone. Yet, I have concluded that this journey has been a true honor. I am blessed to have been chosen to parent these two micro-preemie kiddos and I wouldn’t trade them in for the world!

 

 

 

 

 

 

 

 

Nineteen fifty-nine was a year of soft amusements for children. Dr. Seuss’s zany Happy Birthday to You! arrived in bookstores and Mattel introduced Americans to the Barbie doll and her frozen plastic gaze. On TV, suburban comedies like Father Knows Best and Dennis the Menace administered doses of mild humor laced with bland moral guidance.

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But the Caldecott Medal, the premier American award for picture books, registered a note of dissent. It recognized Chanticleer and the Fox, the first picture book written by a young illustrator named Barbara Cooney. Adapted from the salty Middle English of The Canterbury Tales, the book tells the story of a proud rooster, Chanticleer, who falls prey to a fox’s flattery. Just as the fox is about to devour him, the rooster turns the tables, tricks the fox into opening his mouth, and escapes. The book ends with the rooster and the fox conversing, each ruing his own foolishness and impulsiveness.

In her acceptance speech for the award, the small blond author, gesturing with her long hands, conceded the anomaly of her book. “Much of what I put into my pictures,” she admitted, “will not be understood.” But she had chosen to write it because she thought that the “children in this country need a more robust literary diet than they are getting.” “It does not hurt them,” Cooney insisted before her audience of senior librarians and educators, to hear about the real stuff of life, about “good and evil, love and hate, life and death.” (She did not say so that evening, but she had already experienced a good bit of each.) She vowed that she would never “talk down to—or draw down to—children.”

Children’s books are more than just entertainment. They reflect how a society sees its young and itself. By shaping the attitudes and aspirations of children, they help shape the world those children will grow up to inherit. Barbara Cooney went on to have a long and celebrated career in American picture books. She illustrated or wrote some 100, including modern classics such as Miss Rumphius and Ox-Cart Man (which garnered her another Caldecott Medal, in 1980). Her books are still beloved, nearly two decades after her death, by readers who admire their visual charm and rich historical storytelling. But Cooney’s greatest gifts, manifest in her work from the start, are more profound. Her singular vision of young Americans and her unique ideas about how to write for them make her books more relevant to Americans today—and perhaps more necessary—than ever before.

I first discovered Cooney when a friend gave my 3-year-old daughter a copy of Miss Rumphius (1982). As happens with some children and some books, Suzanne demanded to hear it over and over. The deceptively simple story follows Alice Rumphius through the arc of her life. The book begins with the young girl listening to her immigrant grandfather’s “stories of faraway places.” She declares that she, too, will travel and then return to live in a home by the sea. Her grandfather likes her idea, but adds that she must also “make the world more beautiful.” “All right,” Alice says, and for the rest of the book she strives toward her three goals. On the next-to-last page, we see the circle of her life completed as Alice’s niece—also named Alice—has the same conversation with her now-aged namesake in her home by the sea.

As the readings multiplied, instead of becoming tired of the book I found myself more and more immersed. There is much to like in Miss Rumphius. Cooney’s pictures, in rich colors with a spare, faux-naïf flatness that evokes American folk painting, are filled with fine details that catch the eye. Alice’s journey to “make the world more beautiful” is touching. The cyclical, generational architecture of the story, in which the young girl of the first pages is an old woman by the end, is very satisfying.

Still, the story pulled at something more in me, something deeper. Cooney draws the portrait of a rare kind of person: someone with an inner compass who allows herself to be guided by it even when the course it charts is not so easy. Miss Rumphius never marries and has no family of her own. (Cooney leaves unstated that this decision would have made her highly unusual in the book’s early-20th-century setting.) Alice encounters obstacles and setbacks on her path, as we all do, but she remains absolutely steady, absorbing the judgments of others and her physical failings with equanimity. Without the slightest hint of preaching, Cooney models for her young readers how they can live an intentional life, one in which they imagine a future for themselves and go toward it without fear.

What impressed me most about this portrait was Cooney’s refusal to sugarcoat it. Following her own course, Alice lives a solitary life. Cooney explores with unsparing frankness the loneliness enlaced with her protagonist’s self-possession. Though Alice makes “friends she would never forget” everywhere along her journey, Cooney dwells visually on her moments of solitude. There she stands alone beside her house by the sea; there she goes, accompanied only by a cat, scattering lupine seeds to make the world more beautiful. After she starts her sowing, the people of her town dismiss her as “That Crazy Old Lady.” Don’t think it’s easy, Cooney seems to whisper to her readers, to live such a self-directed life.

Barbara Cooney knew what it meant to be lonely. She was born 100 years ago, in 1917 in Brooklyn, to a prosperous German Irish family. Both sides of her family had risen from immigrant roots to wealth and social prominence by the turn of the 20th century. Cooney’s father went to Yale, her mother attended the elite Packer Collegiate Institute in Brooklyn, and Cooney herself matriculated at Smith College.

Cooney was the odd one out in her family. Her father, Russell, playing the conservative patriarch, favored her three male siblings. The slight, unconventional girl found her greatest happiness during summers at the family’s compound in Waldoboro, Maine. The little New England town settled by Germans in the 18th century had a comfortable feeling for Cooney and her mother.

After finishing college, in 1938, she returned to New York hoping to write for children. She had little formal artistic training, and her career got off to a spluttering start. The small but prestigious publisher Farrar & Rinehart issued three charming chapter books, all set on the Maine coast, which she wrote and illustrated in plain black and white. None of them had great success.

Soon after her first book appeared, Cooney met and quickly married Guy Murchie, a tall and worldly writer, and a son of one of Theodore Roosevelt’s Rough Riders. Within the space of three years they had two children, whom Cooney named Gretel and Barnaby, after characters in classic fables. But the marriage did not last. Cooney discovered that Murchie was a “cad” and a “womanizer,” as her children later put it. Having suffered through several painful years, she decided to move out.

At a time when divorced single parenthood was exceedingly rare, striking out on her own cannot have been simple. Cooney’s father and twin brother had disapproved of her marriage and disowned her. She supported her family by setting aside her own writing and turning full-time to illustration. She took on seemingly every project she was offered, including a collection of folk songs for children and several progressive educational tracts, with titles like Teacher Listen, the Children Speak. She integrated her small family into her work, setting up an antique drafting table in the living room and using her children as models.

In 1949, Cooney remarried and settled in Pepperell, Massachusetts. She and her new husband, the town physician, Charles Talbot Porter, had two more children. In spite of their newfound stability, though, Cooney and her family stood out. In a town where almost no women of her class had a career, she regularly put in six-hour days at her desk, illustrating as many as half a dozen books a year. Just as unusual, Cooney interacted with her children as though they were not simply her charges but her friends. She eagerly encouraged their creative impulses. They built canoes, tried to mine for coal in the yard, and put on a circus complete with a lion tamer and a high-wire act. And every night, the whole family came together for long discussions over a late, candlelit dinner.

Barnaby, the main character of The Little Juggler (1961), the second picture book Cooney wrote, might have been at home in the Porter household of the 1950s. He is an orphaned tumbler living in medieval France. In Cooney’s version of the often retold French legend, the penniless boy is chagrined that he has no Christmas gift to offer the Virgin Mary. Even without possessions, though, he realizes that he still has his tricks. On Christmas Eve, he sneaks into a chapel and performs before a statue of the Virgin until he collapses. Two monks are scandalized by what they take to be his levity. But when the Virgin appears and revives the little tumbler, they realize their error and allow him to stay with them.

Cooney’s Barnaby is unlike the Barnaby that one finds in most other versions of the tale. In her hands, the story is not about the naive wisdom of a child or a simpleton. Cooney reimagines Barnaby as the equal of any adult. He suffers real penury and makes deliberate decisions that lead to his offering in dance. The Virgin’s rebuke of the monks and her embrace of the child serve as supernatural confirmation of the child’s natural parity with his elders.

Barnaby, wittingly or not, is part of a very old argument about the nature of children, which Americans have been having both in and out of books since long before there was a United States. Are children basically like adults, or are they essentially different from us? In premodern times, the French scholar Philippe Ariès famously argued, there was no childhood in the sense that we understand it. Children were imagined as little adults, just the way that they were depicted in many paintings. Books for them were made to match. When New England children studied the alphabet in The New England Primer, for instance, they learned that they had to choose whether they would be sinners or saints, whether they wanted to live or die.

In the early 19th century, a “Romantic vision of childhood” (as the historian Steven Mintz calls it) supplanted these earlier ideas. Middle-class Victorians reconceived of childhood as an idyll, free from worry and fears of all kinds. They thought that it had to be so, because they imagined their children as fragile and incapable beings. To enjoy this period of life, children had to be shielded from the discomfiting realities of grown-up existence. It is no surprise that Victorian books for children skewed toward sanitized fairy tales, tame fantasies, and anachronistic histories. More than a century later, these notions continue to echo in the vast number of children’s books that paint a rosy, untroubled picture of the world, as though that were all young minds were able to bear.

For Cooney, the Victorian vision of children made no sense. Influenced by her experiences as a child and as a parent, she thought that children were moral and intellectual agents—and should be taught to see themselves as such. (Her encounters with progressive education may have also encouraged this belief.) Like Alice Rumphius, Barnaby the tumbler has a kind of moral seriousness and resourcefulness about him, which makes him more reminiscent of the hardy offspring of Puritans than the innocent babes of Victorian fantasy.

The moral gravity of her child characters lends Cooney’s stories an old-fashioned air. But the view of children’s capacities that she embraced has come to seem rather prescient. Experiments in child psychology over the past 30 years have revealed that children are far more morally and intellectually sophisticated than many people once believed. Toddlers engage in inductive reasoning. From a very young age, children can distinguish right from wrong. Indeed, in some ways, children draw more readily on their abilities than we do on ours. They are quicker than adults, for instance, to learn and generalize from their experiences. Cooney didn’t know about this research. But she came to similar conclusions on her own and wove her respect for children’s minds into all her books.

The success of Chanticleer and the Fox gave Cooney a wider berth than she had had before to pursue her vision. She had always been deeply interested in folktales and fables from around the world. Publishers now associated her with that genre and offered her a regular stream of them to illustrate. During the 1960s and early ’70s, she made pictures for more than a dozen books based on folktales. As she had with Chanticleer, she aimed to meticulously reconstruct each story’s historical setting. She began to do research abroad. Cooney traveled extensively over several decades, including to France, Spain, Greece, North Africa, Mexico, and Oceania. She returned from each trip with notebooks full of interlaced text and images, as well as hundreds of photographs and boxes of reference books.

The ’60s engrossed Cooney. She had never been overtly political, and she remained more of an observer than an active participant. What really interested her about politics was its human drama: how it revealed the “struggles” of individuals, as her daughter-in-law put it, to make their way in life. There was now a great deal of such drama to watch, even in Pepperell. Cooney eagerly followed the progress of the civil-rights movement, supported John F. Kennedy and George McGovern, and swam along with the feminist movement. She read Simone de Beauvoir, perhaps in the original French, and became more vocal about her long-held belief in women’s rights.

Cooney started experimenting with new visual forms. Until the early ’60s, she had worked largely in scratchboard (a technique that involves using a stylus on a specially prepared board). Now freed from the obligation to work in cheap-to-print media, she began using colored pencils and acrylic and oil paints. Even as she shifted to different ways of illustrating, though, she retained the flatness and sharp contours that had become a hallmark of her pictures during the decades of work in scratchboard.

Her new style had fully matured by the time she illustrated Ox-Cart Man, the 1979 book that won Cooney a second Caldecott Medal. The rhythmic, nearly hypnotic text by the poet Donald Hall depicts the cycle of a premodern New England family’s life. It starts with the family loading a cart in the fall with goods to take to market. By the end, we are in late spring, watching the family accumulate the exact same set of goods for another year. This is a book in which, by a certain measure, nothing really happens at all.

Cooney’s pictures, though period-appropriate to a tee, transform the story into a meditation on love and loss. At the center of the book, she devotes a full page to a single line of Hall’s text: The farmer “sold his ox, and kissed him good-bye on his nose.” Cooney shows the farmer, his hands gently embracing the ox’s head and his face serious, about to put his lips to his companion’s pink muzzle. The only other presences in the picture are a skeletal tree and a carpet of fallen leaves. Half a dozen pages later, though, the sprightly tail and hindquarters of an ox calf in the barn assure us that the cycle is recommencing.

Like Miss Rumphius, which appeared in print three years later, Ox-Cart Man is about change and stability, the two poles of a small child’s life (and of any life). The genius of both of these books is how they use the stability of cycles to steady the destabilizing reality of change. A cycle, whether of seasons or generations, is after all just a form of change that promises continuity and return. The loneliness of Alice Rumphius and the passing of the years on the farm are subsumed, each in turn, by the reassuring thrum of the larger rhythms of life.

Miss Rumphius and Ox-Cart Man both appeared as the conservative movement’s triumph brought a close to liberalism’s long postwar reign. Ronald Reagan and the movement’s other storytellers fueled their assault on the liberal consensus with a vivid and nostalgic retelling of the national past, celebrating cultural homogeneity, hierarchy, and an up-by-the-bootstraps ethos of success. It is surely no coincidence that just as this narrative spread, Cooney, an avowed liberal, began for the first time in her long career to create her own American myth. In a string of books that are among her finest, including three that she wrote and illustrated—Island Boy (1988), Hattie and the Wild Waves (1990), and Eleanor (1996)—she sketched an alternative vision of the American past.

Cooney’s books from these years set one of her habitual outsider figures—immigrants, loners, people guided by an inner light—at the center of an unmistakably American story. Island Boy, which echoes Miss Rumphius at several points, tells the story of Matthais Tibbetts, a boy living off the Maine coast in the 19th century. Hattie is a lightly fictionalized biography of Cooney’s mother and her upbringing in turn-of-the-century immigrant Brooklyn. Eleanor is the story of Eleanor Roosevelt’s childhood. Each protagonist’s life offers a counterpoint to the Reaganite fantasy: an American history built on moral precocity, empathy, and an abiding concern for others.

Matthais and Hattie share the self-awareness of Alice Rumphius. Like her, both declare their intentions for the future at a young age. Little Matthais longs to be useful around the farm, in spite of his older brothers’ scornful dismissal. Hattie announces to her skeptical family her plan to become a painter. They share Alice’s occasional lonesomeness, too. On the second page of Island Boy, baby Matthais is already alone, sleeping apart from his many brothers and sisters. And when his brothers give him the brush-off, he goes to sit by himself “under the red astrakhan apple tree” beneath which, many pages later, he will be buried. An “island boy” indeed.

The child protagonists of these three books have an extraordinary empathy for other outcasts and strangers. Eleanor always thinks about “people less fortunate—about the newsboys and the people of Hell’s Kitchen.” The boy Matthais, in perhaps the most affecting passage of a moving book, adopts a baby seagull he finds orphaned on the “Egg Rock.” He cares for it, feeding it seafood and “pie and doughnuts,” and the little bird follows him everywhere. Eventually he teaches it to fly and sends it “home.” Matthais’s empathy helps make him into something of a feminist avant la lettre. When he and his wife, Hannah, return to the island and have three girls, his brothers again scoff—“A farmer needs sons for the heavy work”—but Matthais ignores them. “Women and girls can work mighty hard too,” says Hannah, and her husband seems to agree.

In Eleanor, completed just a few years before her death in 2000, Cooney made her most insistent statement about the attributes that make a great American. The book took shape while Cooney was working on a never-completed project that was to be the story of a male artist’s childhood. Like most of Cooney’s protagonists, Eleanor is lonely. Unlike most of them, she has her isolation thrust on her by others. “From the beginning,” the book opens with a punch, “the baby was a disappointment to her mother.” (Who but Cooney would dare begin a book for children with such dark words?) Things immediately go from bad to worse. Little Eleanor is spurned by much of her family and orphaned at the age of 9. But though she is shy and awkward, she shows glints of that steely Cooney steadiness; she always tries to be brave.

Eleanor’s luck finally starts to turn when she goes away at 15 to boarding school in England. With the help of the school’s headmistress, the “sad young girl” soon finds her footing. She discovers her strengths, learns to “think for herself,” and in short order becomes a mentor to other “lonely girls.” She returns home to America “poised and confident, brave, loyal, and true.” The book’s epilogue, which telegraphically recaps her later life, concludes with Adlai Stevenson’s eulogy to the United Nations General Assembly: “She would rather light candles than curse the darkness.” The line never fails to leave me with tears starting in my eyes.

Like so much of Cooney’s work, these late books have an oddly timely quality. What it means to be an American is in question now as much as it was several decades ago, when they first appeared in print. The civic virtues that they model are no less under threat. To read Island Boy or Eleanor, or even Miss Rumphius, today is to encounter a vision of America as a nation shaped by those who are on the outside, the oddballs and the introverts. These are the people, Cooney suggests, who know themselves and their minds and who have the steady self-knowledge to build a society. These books, these characters, offer an idealized reflection of an America that could be, a country whose culture values empathy and patience—two qualities that seem now to be in short supply.

Children born today will face no small amount of uncertainty as the future unfolds. Cooney’s characters, by exhibiting the virtues of foresight and moral courage, might be able to help. I can well imagine a child today sitting on a grandparent’s knee, just as Alice Rumphius did, and declaring an intention to make the world better. Cooney would certainly have wanted that. For her, as she said in her 1980 Caldecott Medal acceptance speech, the point was not to make “picture books for children.” The point was to make them “for people.”

My daughter, I have to admit, is getting a bit too old for Barbara Cooney’s books. The excitement Suzanne used to feel in hearing them over and over has dimmed. When she sees them on my desk now, she jokes that they are my books. I feel a little sad about that. But in a funny way, Cooney predicted that this would happen and so robbed the moment of its sting. Life and time, in her world, always move in circles. And so in Suzanne’s loss of interest, I can already begin to see the turning of the wheel: the first increment in the long rotation by which she will go from the child, listening with rapt attention, to the adult who will read them to a daughter or son of her own.

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*Opening illustration credits: Ox-Cart Man (1979), Miss Rumphius (1982), Island Boy (1988), Hattie and the Wild Waves (1990), Eleanor (1996). Illustrations © Barbara Cooney Porter. Used with the permission of Viking Children’s Books.

Late Sunday night, the comedian Billy Eichner wrote on Twitter, “Kevin Spacey has just invented something that has never existed before: a bad time to come out.”

After years of declining to talk about his sexual orientation, Spacey hurled it out in no uncertain terms as part of a public statement: “I choose now to live as a gay man.”

Eyebrows may have been raised by the contentious phrasing—the history of the idea of choice in sexual orientation being loaded. But many eyebrows were already fully raised by the fact that this sentence came after a half-apology for an alleged 1986 child molestation.

The incident involved actor Anthony Rapp, then 14 years old. BuzzFeed published the allegation Sunday night, and Spacey’s statement followed less than three hours later. He claimed no recollection of the evening in question, but wrote, “I owe [Rapp] the sincerest apology for what would have been deeply inappropriate drunken behavior.”

Spacey there again dropped a treacherous implication—that drunkenness might excuse climbing on top of a child in bed and “making a sexual advance,” as BuzzFeed reported the allegation. Still the primary issue with the statement was the recurrence of a trope: A powerful person who is charged with abuse claims a marginalized status.

The recent parallel is Harvey Weinstein’s reported claims of “sex addiction.”

Adopting a marginalized identity in a moment like this does more than bleed the meaning out of an apology. It sucker-punches the entire marginalized group. It sets back fights for civil rights—in these cases, respectively, non-heterosexual people and mentally ill people, burdened for generations by baseless stereotypes pertaining to pedophilia and violence. As writer Shanelle Little saw it, “Kevin Spacey willfully harmed a child and then turned and painted a target on the gay community’s back.”

Writer Dan Savage went further, suggesting opportunism in Spacey’s plea: “I’m sorry, Mr. Spacey, but your application to join the gay community at this time has been denied.”

Given the timing of the news story and the actor’s subsequent statement, some readers offered that Spacey may have simply spoken recklessly in a moment of fear. But as The Daily Beast writer Ira Madison III reasoned, “Y’all, Kevin Spacey didn’t just whip up that statement. He knew it was coming. You don't report this without reaching out for a response.” Indeed, BuzzFeed editor Shani Hilton confirmed that Spacey had been contacted repeatedly, and that reporter Adam Vary “sent over a detailed letter with allegation prior to publication.”

It is unlikely that after decades of refusing to identify as gay, Spacey would do so in a dashed-off statement. It is more likely a move to redirect the focus of the attention, as is often the tactic of powerful people.

In this case it worked. Multiple news outlets reported the story not as one of alleged child molestation, but as one of a famous actor being gay. At Reuters, the headline was “Actor Kevin Spacey Declares He Lives Life as a Gay Man.” The New York Daily News went with “Kevin Spacey Comes Out as Gay.” ABC News ran “Kevin Spacey Comes Out in Emotional Tweet.”

When a person hints at admitting to allegations of child molestation, the subject of sexual orientation is not the headline. In this case, it is not the first, second, or third most important part of this story. (Reuters has since updated the headline to “Kevin Spacey Apologizes After Actor Describes Sexual Advance at 14.”)

Even without litigating the alleged events of 1986, at least two transgressions here are significant. First is the conflation of child molestation and homosexuality, which are not related. This is a narrative that has been cultivated—and continues to be—to paint gay people as deviant. It stretches from religion to medicine, from Biblical scripture to the American Psychiatric Association’s Diagnostic and Statistical Manual, which included homosexuality as a disease until 1973.

Second is the recurring act of appropriating marginalized status at a time when Spacey stands accused of abusing power. The alleged abuse feeds the delegitimizing narrative used to keep the group marginalized. He closed his note with, “I want to deal with this honestly and openly and that starts with examining my own behavior,” but this appears to be honesty of convenience, the rare bad time to come out.

Instead his statement put himself ahead of that community, with which he chose not to identify—not to support and empower from his high vantage—until it served him, and he risks dragging it backward.

This article contains spoilers through the entirety of Stranger Things 2.

One of the most horrifying moments in Stranger Things 2 comes toward the end of the third episode. Will (Noah Schnapp) is at school, helping his friends look for D’Artagnan, a sentient blob Dustin (Gaten Matarazzo) found in his trashcan. Will peeks inside a bathroom stall. The word EVIL is scrawled on the wall, as if to foreshadow what’s about to happen. D’Artagnan, hiding behind the toilet, hisses, and the sound triggers Will, shifting his reality back into the Upside Down. Seeing a dark shape manifest in the hallway, Will runs outside, but then turns to face it. The gargantuan black form invades his body, entering his eyes, ears, nose, and mouth, enveloping him whole.

The scene is visually and aurally jarring. The sound effects—a combination of thunder, growling, and robotic beeping—crescendo, as Will is overpowered by the Shadow Monster, the major antagonist of Stranger Things 2. It’s terrifying, but also disturbing simply because it’s so obvious that Will is being violated. And in the following episode, as Will returns to reality and tells Joyce (Winona Ryder) what happened, his language echoes words used by survivors of assault. At first, he pretends he can’t remember. Then, pressed, he tries to explain. “I don’t know, it came for me,” he says, crying. “And I tried. I tried to make it go away, but it got me, Mom. I felt it everywhere. Everywhere. And I still feel it.”

This isn’t the first time that Stranger Things has explored the effects of trauma. The first eight episodes, released in the summer of 2016, were praised by some writers and psychotherapists for their depiction of Eleven (Millie Bobby Brown), and how her behavior seemed to stem from her having grown up in a particularly tortured environment. The show, set in the fictional town of Hawkins, Indiana, during the early ’80s, was an homage to the cultural hallmarks of that era—The Goonies, Close Encounters of the Third Kind, E.T., John Hughes. But it was also rooted in horror, notably the stories of Stephen King. Eleven, like the young protagonist of Firestarter, was given strange powers by a government experiment involving hallucinogens, and gets nosebleeds when she wields them.

Few horror authors are as informed by trauma as King, or as attuned to the ways in which it affects children. Throughout King’s books, the academic Roger Luckhurst has written, childhood trauma is associated with supernatural capacities, but it also tends to reverberate into adulthood and manifest in other ways. Stranger Things 2, which is much darker than the first season, leans fully into King’s exploration of emotional damage and the unknown. Virtually every character in Hawkins is wounded in some way. And the thoughtfulness with which the show’s creators, the Duffer Brothers, portray their experiences is what most distinguishes Stranger Things from its source material.

One of the most maddening tropes within disaster movies is how characters who’ve endured extreme trauma tend to instantly recover as soon as they’re rescued (picture the survivors of Jurassic Park smiling serenely in the helicopter at the end). Stranger Things was guilty of this to some extent in its first season, as my colleague Lenika Cruz pointed out—when Will first wakes up in the hospital, his friends babble excitedly about how rad Eleven was, and what crazy powers she had, without any real acknowledgment that she’s also very much, to their knowledge, gone. Stranger Things 2, though, is inflected from the start with the sense that, even a year later, its characters are still deeply altered by what happened to them.

Most obviously, there’s Will, who’s returned physically from the Upside Down, but who still flickers intermittently back into that dimension. His doctor at the Hawkins government lab (Paul Reiser) assures Joyce that these after-effects are a kind of post-traumatic stress disorder, and that the upcoming one-year anniversary of Will’s disappearance is exacerbating them. This gives little comfort to Joyce, who’s suffering through her own delayed responses to losing her son—fighting extreme panic any time he’s out of her sight.

The loss of Barb is also profoundly felt in the first episode. Nancy (Natalia Dyer) weeps in the bathroom when she visits Barb’s parents, who are dealing with their own loss by denying it, selling their house to give money to a “journalist” who assures them he can find Barb. In the library, Nancy freezes when she sees a girl with red hair, and then lashes out at Steve (Joe Keery), her boyfriend. “It’s like everybody forgot,” she tells him. “It’s like nobody cares.”

In the same way that Will’s friends use Dungeons & Dragons as a framework to understand what’s happening in Hawkins, Stranger Things 2 employs its supernatural storylines to explore trauma in the real world. Some events, like losing a friend or a child, need little translation. Others, like what happens to Will in Season 2, stand as analogies. The treatment of his “episodes” mirrors real manifestations of PTSD: They’re not “nightmares,” Chief Hopper (David Harbour) tells Joyce, they’re flashbacks, which is why they feel so real to him in the moment. And Joyce experiences them too to a degree, freezing when the phone rings. Meanwhile Will, unable to efficiently verbalize what he’s feeling, finds some solace in art therapy, using his crayons to draw countless dark, jagged pictures of the feelings he can’t explain.

Eleven, absent from her friends for almost all of the second season, has her own painful progress, and her relationship with Chief Hopper is one of the most intriguing elements of her storyline. Hopper, who was revealed in the first Stranger Things to have lost his daughter to a fatal illness, begins to see Eleven as a replacement. Like Joyce with her son, his instincts are to keep her confined in order to keep her safe from the government operatives who are searching for her. But this chafes with Eleven’s own psychological trauma from being imprisoned for so long by the man she called Papa (Matthew Modine). Inevitably, she erupts with frustration at being kept apart from her friends, and with Hopper gone all day. “Nothing happens!” she shrieks. “Nothing happens and you stay safe,” he counters. “You’re just like Papa,” she tells him, before shattering the windows in a psychic outburst of rage.

In the final episode of the second season, Hopper acknowledges his own mistakes, and compares his grief to a black hole. “She left us,” he tells Eleven of his daughter. “The black hole. It got her. And somehow, I’ve just been scared, you know? I’ve just been scared that it would take you too.” It’s a moment that heals some of the discord between them, and addresses the conflict between each of their needs. Other families in the series aren’t so lucky.

Like King does in It and Gerald’s Game, Stranger Things 2 explores the heritage of trauma, and how it can be passed from one person to another. This is most clearly embodied by Billy (Dacre Montgomery), an archetypal bully and the older stepbrother to Max (Sadie Sink). For most of the second season, Billy is purely a jerk, screaming at Max, pushing around Steve on the basketball court, and warning Max to stay away from Lucas (Caleb McLaughlin). But in the eighth episode, the show reveals that Billy is tyrannized by his own father, physically beaten, emotionally abused, and forced to repeat what his father wants him to say. It’s behavior that he in turn inflicts on Max.

The canon of ’80 movies Stranger Things draws on isn’t always so textured with its treatment of bullies, who are usually one-dimensionally cruel. King goes deeper with Henry Bowers, one of the antagonists in It, who’s abused by his father, a mentally ill former Marine. Violence, King emphasizes, is generally a learned behavior rather than an instinctual one. Stranger Things 2 echoes this insight by emphasizing that Billy uses his aggression to relieve the trauma he experiences at home, but also that it reverberates through Max. “My stepbrother’s always been a dick, but now he’s just angry all the time,” she tells Lucas. “And well, he can’t take it out on my mom. … I guess I’m angry, too.”

The use of anger as a tool for traumatized kids is similarly depicted in the breakaway seventh episode, when Eleven travels to Chicago to find Kali (Linnea Berthelsen), her “sister.” Kali, who was also imprisoned in the Hawkins lab by Modine’s Dr. Brenner, has recovered as a teenager by adopting a group of misfits who’ve also been damaged by society, and seeking revenge against everyone who’s harmed her. Her anger, she tells Eleven, “festered. It spread. Until finally I confronted my pain, and I began to heal.” But the show argues that Kali’s empowerment through action harms others, particularly the children of the people she pursues, perpetuating a cycle of violence that even Eleven can see isn’t as positive as Kali attests.

Horror stories, King has written in Danse Macabre, are appealing because they offer a way of communicating what can’t always be said out loud. They provide a chance to experiment with “emotions which society demands we keep closely in hand.” But they’re also intangible fears made literal—indistinct kinds of anxiety channeled into vanquishable enemies. King writes that monsters are often metaphors (or analogies, as Lucas points out) for real suffering, and real trauma. And Stranger Things 2, for all its comedic moments and ’80s-movie tropes, understands this better than any of its predecessors. The darkness, it explains, is always there, in this dimension and in others. But it also presents a more honest path to surviving it—not an instant fix, but a slow, difficult path toward recovery.

Having a child with complex medical needs is never the plan, but rather something into which you’re thrown, head first.  When you have a child like Addie, it’s important that you advocate for her ferociously. My role as an advocate for her started in the NICU - when Adeline was constantly getting sick, with regularity, every 10 days.  She’d start to have feeding intolerance, her belly would blow up, and she’d start excessively vomiting.  The doctors would say that she had a C-Papp belly, or that she was just a "happy spitter". I heard their words, but I knew something wasn’t right.  Each time it occurred, the treatment was the same.  NPO and gut rest until she baselined. But when we reintroduced feeds, the cycle would repeat.  It was the first time I really thought that I needed to question the plan. These professionals weren’t seeing what I was seeing.  I needed to voice my concerns.  I was with her all day long and there was nothing "happy" about her spitting.  It was at that moment I stepped into the role as mother AND advocate, and I haven’t stepped out since!

Image Credit

“She was on a journey that required her to be FIERCE.
She was up for the task”

Learn Everything

You need to learn everything about your child’s diagnosis, their strengths, their specific needs, and the challenges they currently face or that they will face.  Make sure to read reputable sources and not trust every available source. It’s also important to keep learning; the medical world is constantly changing and evolving and you must be prepared to move at its pace.

Research

Research treatment options, procedures, doctors, and hospitals.  Figure out the best people and places for your child’s specific needs.  A doctor who may have been a perfect fit for another child may not be a perfect fit for yours. Don’t rest on your laurels, either. While you may find a team or an institution that seems to fit at first, don’t take for granted that they’re the only or best available.

Listen

It’s important to gain other perspectives on the issue, diagnosis, and treatment plan.  I often have the same conversation with many providers so I can get varying opinions from the different team members; surgery, GI, nutrition, NP, etc. Don’t be afraid to break down the ego barriers that exist in many medical establishments – and recognize that no single person has all the answers.

Ask the “What’s Next?” Questions

“If this test is negative, then what does it mean? What will we do next?” or “If this test is positive, what is the treatment?”  I’ve had experiences with providers saying not to get ahead of myself and to wait, but it can help you to better prepare yourself if you know what could possibly be next.

Don’t Assume and Don’t Wait

Don’t assume everyone will make the best decision for your child’s rare disease and don’t wait for someone to recognize what you need or expect others to advocate for you.  Doctors and medical providers are human, they make mistakes, they don’t know everything, and you are the only constant in your child’s life.  You need to take control of your child’s medical treatment and be their voice.

Be Prepared

Your time with doctors during an appointment and rounds in the hospital is limited, so always be ready and prepared.  Have questions prepared, and if possible send them in advance.  While in-patient, no matter how tired I am, I make sure I’m awake and have had my coffee before the doctors come around in the morning, usually before rounds. This gives me some extra one-on-one time with them. And if you can, always participate in rounds. It’s one of the only times in a hospital stay that you’ll get the entire team together at once.

Ask Questions, Voice Concerns

 I try to ask questions during every conversation I have with a member with Adeline’s medical team.  I ask the same questions to multiple people.  I also always voice my concerns about every step of the process and share with the team my priorities for her.  Sometimes, the questions may be to check my own comprehension, “What I am hearing you say is that this is the current plan and these are the reasons we decided on this plan, did I miss anything?”

Prioritize Quality of Life

One thing your team may not always be thinking about is your child’s quality of life.  Have they gotten enough sleep? How can you normalize their day as much as possible? How can you make sure they’re as comfortable as possible? Doctors and medical professionals have a tendency to focus on the specific, acute problem at-hand, sometimes losing sight of the bigger picture that is your child’s life.  During our most recent in-patient stay, they weighed Adeline at 7pm, did vitals at 8pm, medications at 8:30 pm, and hung her PN at 10pm.  This was not convenient for a toddler and interfered with her bedtime, so I spoke to the team about clustering her cares and doing as much as possible all at the same time.  It was a small thing, but when she’s dealing with other things, interrupted sleep doesn’t need to be an add-on.

Maintain Your Own Records

It’s essential to maintain your own records (to a point). Make sure to have a list of all your child’s medications (not just the dosage, the strength), recipes for formula or in our case, her TPN.  If your child has a medical device, know the size, brand, and carry a repair kit or any specific, hard-to-get supplies as every hospital may not carry what you need.  In my diaper bag, I carry an emergency medical kit with all the items she might need.  For example, during our last in-patient stay the floor did not have the right GJ tube connectors she needed, so my extra set came in handy!

Understand Benefits

It’s important that you fully understand your current health insurance plan.  It can help you make decisions about which doctors to use, and what therapies your child needs.  For example, we had a cap on how many OT, SLP, and PT sessions we could have in a year.  I knew we couldn’t have every therapy every week or it would cost us 1000’s per month so we had to prioritize what she needed most, and how much of each type of therapy she would need. It’s also you important you review medical bills, as up to 8/10 medical bills can have errors. Sometimes, these errors can lead to denial of care and if caught, you can often appeal their decision.

Collaborate

Having partners goes a long way, so making the extra effort to befriend nurses, secretaries, and your medical team will only benefit you and your child in the long-run.  Be willing to compromise, but only when it doesn’t impact your child’s safety, health, and overall well-being.  When teams disagree, ask for a parent meeting with everyone present. Whenever possible, take advantage of any patient liaison/advocate services offered by your providers’ institution(s).

Handle Disagreements, Like a Boss

Say what’s on your mind, but try to do it in a way that doesn’t place blame or hurt anyone else.  Try to control your emotions and avoid getting angry or defensive.  Be brave enough to say, I don’t agree with you.  Don’t give up because of red tape, typical protocols, or recent defeats.  The journey of a complex medical kiddo is often uphill, and the only way to succeed is to push on.

Know When It's Time

You need to know when it’s time for a second opinion, even if it’s just to give you peace of mind.  Also know when it’s time to move on to a new doctor or hospital. As I said before, medicine is ever-changing and constantly evolving. Find a place that evolves at or above the going rate. If you feel them dragging their feet or heading in the wrong direction, course correction doesn’t always work. Sometimes, you’ve got to find a new team that’s willing to try something new, something better, something that will move your child forward.

Forgive Yourself

You’re going to lose your sh@t sometimes, let your temper get the best of you, make mistakes, feel guilty, and have regret.  Accept responsibility, learn from it, and forgive yourself quickly, because there is someone who needs the best version of you. That best version isn’t the person feeling sorry for themselves or wallowing in their own self-pity.

 

Do you have more ideas on how to be a fierce medical advocate??

Comment below and i will update the post!

This post made me laugh but also think about what I’d would want to put on my tombstone one day. Kay’s fudge must have been something else.

Just before 7 p.m. on Halloween, Donald Trump Jr. posted a tweet of his daughter tilting her orange bucket of candy toward the camera, and staring up forlornly at the photographer. Appended to the darling photo was a lesson, or an attempt at a lesson, by the father:

I’m going to take half of Chloe’s candy tonight & give it to some kid who sat at home. It’s never to early to teach her about socialism. pic.twitter.com/3ie9C0jv2G

— Donald Trump Jr. (@DonaldJTrumpJr) October 31, 2017

The tweet immediately garnered fierce blowback, with replies informing Trump Jr. that, for example, Chloe Trump might not want to be a lifelong poster child for the lesson that sharing is bad. The tweet was both a ham-fisted attempt to politicize Halloween and a wrongheaded civics lesson.

First, on the point of Halloween, it’s bizarre to build a case for free-market orthodoxy on Halloween, since the holiday’s main activity is the antithesis of a market: It’s all handouts. Halloween is a hilariously bad object lesson on the merits of the free market and the moral dangers of freebies. Even if one insists that dressing up as a werewolf is a form of “labor,” there is a lot of daylight between redistribution—which is what Trump Jr. is actually criticizing in this tweet—and full-blown socialism, which would imply something far stranger, like federal ownership of Twizzler factories and government mandates on M&M distribution. (As it turns out Halloween is a far better metaphor for inheritance—with which Trump Jr. has some familiarity. Dressing up in clothes purchased by one’s parents, following them around on business, smiling hopefully as they make introductions to wealthy friends, and reaping the considerable bounty of their affluence and social networks is pretty much exactly what inheritance is all about.)

Second, who are these kids who just “sat at home” that Trump Jr. finds mockable? A great deal of them are sick children who rely on candy donations to children’s hospitals. Some programs, like Ronald McDonald House Charities, drop off candy for severely ill kids receiving treatment at home. Other children with curtailed trick-or-treating opportunities might include those living in higher-crime neighborhoods. The simple fact is that most kids want to walk outside with their friends in a funny costume and get free candy: Halloween is extremely fun, and not remotely hard labor. But Trump Jr., thinking of how charity or taxes feel to the well-off, seems to have little thought for the less fortunate humans on the other side of the taxation equation. A donation or a tax, to him, feels like a pure loss that might accidentally reward indolence. Of course, this isn’t merely a joke: The idea that the country would be better off if rich families contributed less of their income to the public support of sick and poor is the basis for the GOP tax and health-care plans.

Finally, Trump Jr.’s snark is a crystal clear example of the wealth gospel, the belief (which has arguably been enshrined as a secular American myth) that prosperity is automatic evidence of virtue and righteousness—and poverty is evidence of the opposite. The idea that the rich and poor inherently deserve their outcomes is a powerful assumption behind the conservative aversion to redistributive taxation—the sharing of winnings among rich and poor. Trump Jr. is arguing that the sharing of wealth is inherently wrong, since young Chloe worked hard for her Reese’s Cups. I have no doubt that she did. But even hard work cannot be infinite justification for selfishness.  

High on the list of awkward social interactions is the moment when a dentist or a coworker shows off her young child’s nonsensical art. A bystander might think the art—or at least the fact of its existence—is cute. Or she might think it’s ridiculous or downright terrifying. In either case, a common reaction is to smile and ask, “What’s it supposed to be?”

After all, these creations rarely look like anything fully recognizable or “real.” I uncovered a host of idiosyncrasies after asking parents about their kids’ art. There was a sideways house (or was it a knife?); a giant tooth resembling candy corn; a supposed self-portrait consisting of an oval with some jagged lines in the middle. Observers tend to laugh these sorts of things off as a kid’s erratic artistic process. If the drawing seems angry or dark, they might worry about what it means.

But experts say these responses rely on an outdated understanding of children’s drawing. Starting in the 20th century, psychologists tended to assume that a kid had reached a high level of drawing development if she could depict something realistically. They argued that when a child drew something simple-looking, like a human figure in the “tadpole” style—a sort of circle-head with arms and legs jutting out of it (and, usually, no torso) that’s common in kids’ drawing—it was because of the child’s misconception of how, say, the human body is organized. A drawing with abstractions or quirks? That meant a child  didn’t quite understand the object she was trying to depict. Or, according to later theories, it simply meant she didn’t know how to represent things realistically (even if she did understand how the thing looked in the real world). But today, a growing number of psychologists suggest that it’s a mistake to see any drawing that doesn’t look “real” as inferior or wrong.

While observers tend to agree that there’s a stage at which most children strive for realistic depiction in their drawing, many psychologists argue that at their earlier stages of drawing, children aren’t thinking about realism. Take, for example, the way kids tend to scatter objects in awkward places in their drawings; they might draw a house on the left corner of the page and then a road that somehow stands above it. But that doesn’t mean they don’t understand how these scenes look in the real world, some experts say; instead, the child is more concerned about achieving a kind of visual balance between the objects. Their goal, ultimately, is to create something that’ll make sense to the person they show it to.

“They are trying to draw a visual equivalent, something that is readable, something that somebody else will understand,” said Ellen Winner, a psychology professor at Boston College who also works with Harvard Graduate School of Education’s Project Zero, a research group that focuses on arts education.

In fact, sometimes children prefer to draw something a certain way even when they know it “should” look different, or even when they’re well able to draw the object more realistically. Winner once heard about a preschool-aged girl who was drawing a “tadpole” human figure; when her father asked her about it, she said something along the lines of “I know they don’t look like this, but this is the way I like to draw them.” David Pariser, a professor of art education at Concordia University in Montreal, added that sometimes children may draw tadpoles simply “because they’re in a hurry and want to do a bunch of them.”

In recent decades, scholars have found that children’s drawing development can lead toward myriad destinations—including forms of “non-realistic” depiction like maps, charts, and symbols. And these destinations can vary across cultures.

Pariser points to a 1930s account by the Australian anthropologist Charles P. Mountford of an Australian Aboriginal child who was raised by European settlers and grew up drawing culturally familiar objects like houses and trains; once he reunited with his Aboriginal community, though, he began drawing using symbols such as circles and squares, which were common cultural forms of expression in his community. If Mountford’s account is accurate, Pariser argues, then what might look to an observer like a move from more-sophisticated to less-sophisticated drawing is actually just a case of the child taking inspiration from a different set of cultural symbols, and perhaps also a different set of expectations from the adults in his life on what counted as good art. “There is nothing inevitable about either style as an endpoint to drawing development,” Pariser told me. In one culture, realistic depiction is the goal; in the other, it’s abstraction.

Theories as to just how culturally constructed kids’ drawing habits really are vary extensively, but experts agree that subtle cultural differences have been found in kids’ art across the world. Japanese children, for example, have been found to draw human figures with heart-shaped faces and big eyes in recent years, which some say is thanks to the influence of manga comics.

A parent might place his daughter’s tadpole drawing on the fridge out of a love for his child rather than for the funky-looking image, but for many people, that tadpole art is actually quite exquisite. In fact, adult abstract artists such as Robert Motherwell and Paul Klee were inspired by children’s drawing. Observers have found similar patterns in modern abstract art and kids’ drawing; one example is the “X-ray” drawing, or a drawing in which the “inside” of a person is made visible (like a baby shown inside a woman’s stomach). For the museum-goers out there who tend to point to a piece of modern art and say, “My kid could have made that!” it’s worth remembering that often, that’s actually just what the artist had in mind.

All this suggests that kids’ shapes and figures aren’t all that simplistic after all—what’s dismissed as simplicity may instead be a degree of mental freedom that many abstract artists long to recreate. Children might be more open to playing with representation of invisible things like sound and emotion, Concordia’s Pariser has argued, because they aren’t yet limited by the constraint of depicting only visible subjects that’s characteristic of traditional Western art.

Of course, young children’s artistic absurdities often come down to the fact that they are kids, that their technical abilities aren’t well-advanced. Many scholars warn against overestimating kids’ artistic sophistication; any similarities to the work of brilliant abstract artists are just lucky accidents, they say.

Lucky accident or artistic prodigy, acknowledging that young kids aren’t as intent on producing a realistic rendering  helps demonstrate what the drawing experience means to them. For many kids, drawing is exhilarating not because of the final product it leads to, but because they can live completely in the world of their drawing for a few minutes (and then promptly forget about it a few minutes later). Adults may find it hard to relate to this sort of full-body, fleeting experience. But the opportunities for self-expression that drawing provide have important, even therapeutic, value for kids.

Even simple scribbles are meaningful. While it was once thought that kids only scribbled to experience the physical sensation of moving their arm along the page, “now it’s been shown that when children are scribbling … they’re representing through action, not through pictures,” said Boston College’s Winner. “For example, a child might draw a truck by making a line fast across the page and going ‘zoom, zoom,’ and so it doesn’t look like a truck when the child is done, but if you watch the process, what the child says and the noises and motion he makes when he’s drawing, you can see that he is trying to represent a truck through action,” she said. “And in a way you have drawing fused with symbolic play.”

Liane Alves, a prekindergarten teacher at Inspired Teaching Demonstration Public Charter School in D.C., told me about a student who presented her with a drawing featuring a single straight line across the page. Alves assumed the child hadn’t given too much thought to the drawing until he proceeded to explain that the line was one of the mattresses from The Princess and the Pea, one of the fairy tales they read in class. The student, however, may have offered a different explanation at another point in time. Maureen Ingram, who’s a preschool teacher at the same school, said her students often tell different stories about a given piece of art depending on the day, perhaps because they weren’t sure what they intended to draw when they started the picture. “We as adults will often say, ‘I’m going to draw a horse,’ and we set out ... and get frustrated when we can’t do it,” Ingram said. “They seem to take a much more sane approach, where they just draw, and then they realize, ‘it is a horse.’”

Ultimately, what may be most revealing about kids’ art isn’t the art itself but what they say during the drawing process. They’re often telling stories that offer a much clearer window into their world than does the final product. Asking them what their drawing is “supposed to be” wouldn’t yield as many answers, either; some have even argued that kids might be naming their work because they’re used to the ritual of their teachers asking them to describe their drawing and then writing a short title on the piece of paper. Studies suggest that kids will create an elaborate narrative while drawing, but when telling adults about their work they’ll simply name the items or characters in the image.

And what about those odd or scary-looking drawings? Does that mean kids are telling themselves stories that are odd or scary?

It’s hard to say, but it’s rarely a good idea to over-interpret it. Winner pointed to parents who worry when their kid draws a child the same size as the adults, wondering whether she’s suffering from, say, a feeling of impotence—a desire to feel as powerful as older people. But the likely reason is that the child hasn’t yet learned how to differentiate size in his or her representation; the easiest solution is to just make all the figures the same size. As another example, Winner noted that psychologists used to try to match the use of particular colors to children’s personalities—until a study showed that kids were often using colors in the order in which they were laid out along the easel (from left to right or vice versa).

What’s most important to remember is that “children’s art has its own logic,” Winner said. “Children are not being crazy.”

“You know, when I was a kid growing up, a lot of things were sacred in our country,” White House Chief of Staff John Kelly said Thursday. Among those were Gold Star families: “I just thought—the selfless devotion that brings a man or woman to die on the battlefield, I just thought that that might be sacred.”

But Kelly acknowledged that might no longer be true: “Gold Star families, I think that left in the convention over the summer.”

Then on Monday morning, Kelly’s boss decided to prolong a feud with the widow of a fallen American soldier:

I had a very respectful conversation with the widow of Sgt. La David Johnson, and spoke his name from beginning, without hesitation!

— Donald J. Trump (@realDonaldTrump) October 23, 2017

Trump’s peculiarly self-contradictory tweet—I was totally respectful, he said as he called the widow a liar—came in response to a brief interview Myeshia Johnson gave to Good Morning America Monday morning. Trump called Johnson Tuesday night, after being questioned about his reticence on the deaths of four Special Forces soldiers in Niger in early October, and boasting that he offered better condolences than his predecessors. (As my colleagues Lena Felton and Taylor Hosking report, the White House then mounted a hasty effort to make Trump’s statements true.)

The call didn’t go well. According to Representative Frederica Wilson, a Democrat, Trump said that Sergeant Johnson knew what he was signing up for when enlisting in the Army; she also said Trump didn’t use Johnson’s name, seeming to forget it, and had left the Johnson family crying. La David Johnson’s mother Cowanda Jones-Johnson confirmed the story, but Myeshia Johnson had not spoken to the press. It was Wilson’s public comments that aroused Kelly’s fury, including an attack on the congresswoman that turned out to be factually wrong.

Kelly, in addition to attacking Wilson, offered a plausible account of what had happened: Kelly, a retired four-star general, told Trump about how General Joe Dunford, now the chairman of the Joint Chiefs of Staff, had consoled Kelly after his son Robert Kelly was killed in Afghanistan. Dunford told Kelly that his son had died doing what he wanted to do, alongside his friends. Trump seems to have delivered that message with less finesse (never mind that such a conversation between two generals is different than a conversation between a grieving widow and a draft-avoiding president), but offering condolences is hard. Kelly presented a version that made Trump seem well-intentioned if clumsy.

On Good Morning America, Myeshia Johnson gave George Stephanopoulos her account of the call:

The president said that he knew what he signed up for, but it hurts anyway. And it made me cry ’cause I was very angry at the tone of his voice and how he said he couldn’t remember my husband’s name. The only way he remembered my husband's name is because he told me he had my husband’s report in front of him and that’s when he actually said La David. I heard him stumbling on trying to remember my husband’s name and that’s what hurt me the most, because if my husband is out here fighting for our country and he risked his life for our country why can’t you remember his name. And that’s what made me upset and cry even more because my husband was an awesome soldier.

Shortly after that interview, Trump tweeted his claim that she was not telling the truth.

This is not, as John Kelly implied with his remarks about the convention, the first time that Trump has feuded with a Gold Star family. After a dramatic appearance by Khizr and Ghazala Khan, whose son Army Captain Humayun Khan was killed in Iraq in 2004, at the Democratic National Convention, Trump traded blows with the Khans for days. The sight of a presidential candidate going after a Gold Star family shocked the nation, and many analysts believed it would hurt Trump’s campaign.

To see President Trump, now the commander in chief, wage a rhetorical fight with a Gold Star widow today falls into the ever-growing category of Trump actions that are shocking but not surprising. (Notably, both cases involve soldiers and families of color.) This is another case of Trump refusing to let anything go. With Kelly’s justification in hand, the president could have apologized for any misunderstanding, insisted he meant well, and moved on. Time and again—from his falling out with FBI Director James Comey to his claims that Barack Obama “wiretapped” him to his exaggerated claims about condolences—Trump’s insistence on never letting go has gotten him into trouble. Because he refuses to back down, making the debate about his bruised ego, he has forfeited the benefit of the doubt about his intentions in the call with the Johnson family.

Did Myeshia Johnson make herself a legitimate target for Trump’s political attacks when she granted the interview to Good Morning America? There will be Trump defenders who argue she did, much as Khizr Khan did by appearing at the DNC. Yet such a pat statement ignores complications. For one thing, Johnson had watched as the president, his chief of staff, and press secretary fiercely attacked Frederica Wilson, a family friend, for dishonesty; it’s understandable that Myeshia Johnson wanted to set the record straight. “Whatever Ms. Wilson said was not fabricated. What she said was 100 percent correct,” she told Stephanopoulos.

Besides, Johnson had already been thrust into the political spotlight through no choice of her own besides marrying a brave man. Moreover, she is a pregnant mother who has just lost her husband in service of his country, and has been told she cannot even see his body. Grieving family members are often angry, and common politeness holds that they be granted some leeway to express that anger, even when that involves contradicting the president publicly (and, yes, perhaps even when they appear at the opposing party’s convention). That’s especially true when her husband died serving as a United States soldier, the sacred act that John Kelly invoked last week.

Trump evidently has little interest in the norm Kelly sought to defend, which is little surprise, since he is the one who turned a question about a botched military operation into a referendum on consoling Gold Star families. If the administration’s accusations of politicization were somewhat hypocritical before, the president’s tweet has shown how utterly empty they are.

Last month, the NBC sitcom The Good Place returned for its second year after a first season that was widely praised as “surreal and high-concept” and “ambitious and uniquely satisfying.” In the two-part pilot, the show introduced a woman named Eleanor (Kristen Bell) who dies and finds herself in a non-denominational heaven by mistake—and who decides to learn how to become a better person in order to earn her spot in the afterlife. With that premise, The Good Place revealed what would eventually become the show’s most important theme: ethics. To avoid being sent to The Bad Place, Eleanor enlists her assigned “soul mate,” a former professor of moral philosophy named Chidi (William Jackson Harper), to teach her how to change her selfish ways.

Many TV critics have acknowledged the show’s unconventional embrace of ethics. But few have delved into what makes The Good Place’s depiction of the discipline so refreshing, yet effective, as both comedy and an informal educational tool. As a bioethicist who teaches a class on ethics and pop culture at Fordham University, I’ve integrated clips from the series into my lectures for a few reasons. While other shows have discussed moral principles, The Good Place stands out for dramatizing actual ethics classes onscreen, without watering down the concepts being described, and while still managing to be entertaining. By spending multiple episodes building on the subject, the sitcom offers a thoughtful and humorous survey of a wide range of concepts that rarely get explored before a mainstream audience.

Most episodes in Season 1 feature, at some point, Chidi rolling out a chalkboard. He breaks down complex ethical frameworks for Eleanor, gives her reading assignments about Immanuel Kant’s categorical imperative and Thomas Scanlon’s book on contractualism, What We Owe to Each Other, and encourages her to take the needs of others, instead of just her own, into account. Fortunately, the show has only grown more confident in Season 2. After the twist in the Season 1 finale—where Eleanor and Chidi find out they’re actually in a version of The Bad Place cleverly designed by the celestial architect, Michael (Ted Danson)—it seemed like the ethics lessons might wane, if not stop altogether.

In fact, the opposite happened, and Chidi finds himself with a new student: Michael, the immortal demon whose goal is to find creative ways to torture “bad” souls, but who claims he now wants to help his victims get into the real Good Place. The newest episode, which aired Thursday, may be the most revealing example yet of how The Good Place keeps deepening the way ethics gets portrayed in pop culture. Despite its emphasis on morality, The Good Place waited until its second year to even address the most famous, and perhaps overused, thought experiment in the field: the trolley problem.

* * *

You don’t have to be an ethicist to have heard of the following hypothetical conundrum: You’re riding a trolley that’s barreling toward five people on the tracks. Doing nothing will result in their deaths. Alternatively, you could pull a lever, diverting the vehicle to another set of tracks, killing one person instead of five. What do you do? As Lauren Cassani Davis wrote for The Atlantic in 2015, “Puzzling, ridiculous, and oddly irresistible, this imaginary scenario has profoundly shaped our understanding of right and wrong” over the last 40 years.

It’s no surprise the trolley problem has become a fixture in ethics intro classes. The experiment helps newcomers to the field examine two important ethical theories: utilitarianism (taking the action that results in the greatest amount of good for the largest number of people) and deontology (trying to do as much good as possible, though the actions you take to get there matter more than the actual results). But the trolley problem and its spinoffs work on a more intuitive level; they don’t require you to dig into more abstract concepts like what it actually means to do the “most good” or weighing “intrinsic versus instrumental” value.

Netflix is particularly fond of the trolley experiment, which was featured in the most recent seasons of two of its original shows this past summer. In the penultimate episode of Unbreakable Kimmy Schmidt’s third season, the protagonist Kimmy takes a college philosophy class, learns about the trolley problem, and becomes obsessed with utilitarianism. Similarly, in a Season 5 episode of Orange Is the New Black—not so subtly titled “Tied to the Tracks”—a character uses the trolley problem to explain the “classic deontological dilemma” of whether to sacrifice one woman for the greater good.

Where other shows’ direct discussion of ethics might begin and end with the trolley problem, The Good Place notably refrained from using this pedagogical crutch for the entire first season. After the finale aired, Maureen Ryan at Variety suggested that the show’s first 13 episodes comprise an extended exploration of the thought experiment. This may be an oversimplification of the series, but Ryan’s observation demonstrates how the dilemma has become virtually synonymous with ethics as a whole.

In Thursday’s episode, “The Trolley Problem,” The Good Place finally did tackle the famous scenario. As usual, Chidi is at a blackboard explaining the experiment to his students, citing the work of the philosopher Philippa Foot, along with a few variations. Less predictably, Michael later transports Eleanor and Chidi onto an actual trolley careening toward humans on the tracks to see how Chidi would react in real time. At another point, Michael takes the duo on a trip to an operating theater, where Chidi lives out the so-called “transplant thought experiment” (in which a doctor has to determine whether to kill one person—in this case, Eleanor—in order to use her organs to save the lives of five other people). Michael insists the aim of these simulations is to help him relate to humans’ ethical decision-making, but Eleanor realizes he’s just manipulating Chidi, finding new ways to torture him.

“The Trolley Problem” allows the experiment to surface in multiple forms, helpfully reinforcing the notion that there is, in fact, no single correct answer, and many ways of thinking through the question. The episode starts with the classroom scene, complete with a model trolley, before literalizing the experiment and making Chidi steer an actual trolley to hilariously bloody effect. But the episode references the problem in more subtle ways, too. In true Good Place fashion, a split-second visual gag during a real-trolley scene involves a movie marquee that reads “Strangers Under a Train” and “Bend It Like Bentham.” Eventually, Chidi is faced with another conflict: After learning Michael might not really care about ethics, Chidi realizes he’ll be tortured whatever decision he makes. He can continue to teach Michael and keep participating in distressing scenarios, or refuse and be sent to the real Bad Place. Chidi ultimately chooses to suffer at Michael’s hand rather than select that outcome himself—essentially deciding not to take action and pull the metaphorical trolley lever.

While the trolley experiment isn’t novel or inherently funny, it would be unthinkable for a show like The Good Place to ignore it completely. So the episode opts to squeeze the basics of the dilemma into a two-minute cold open padded with some jokes about Michael’s total lack of humanity (by way of a solution, he proposes an elaborate method to kill everyone on the tracks). In fact, “The Trolley Problem” gets plenty of comedic mileage out of Michael’s obtuseness. In an assigned essay about the ethics of Les Misérables, Michael rambles about how everyone in the novel is terrible, and that he knows Victor Hugo ends up in The Bad Place, like most French people do. With Michael playing the role of a more depraved Eleanor from Season 1, Chidi doubles down on his beleaguered, nerdy professor persona, forcing Michael to repeatedly scrawl “People=Good,” Bart Simpson-style, on the chalkboard. Early on, Eleanor mocks Chidi for writing a Hamilton-esque rap musical about the Danish philosopher Søren Kierkegaard to teach in class (“My name is Kierkegaard, and my writing is impeccable / check out my teleological suspension of the ethical”).

Much of what makes The Good Place’s lessons so realistic is the interplay between a completely inexperienced student and a teacher who has devoted his life to the discipline. Chidi attempts to break down difficult concepts into morsels Eleanor and her classmates can wrap their heads around, prompting responses the audience may find relatable. The show’s creator, Michael Schur, told me he envisioned Eleanor as a stand-in for viewers, who can process these new ideas alongside her. Schur even drew on his own experience when crafting Eleanor’s initial reaction to learning about utilitarianism in Season 1. She’s immediately satisfied by the approach, questioning why anyone would bother with the other theories—something my students tend to think as well.

A sitcom may seem like an unlikely vehicle for serious discussions about moral philosophy, which viewers might expect to find in medical and legal dramas (albeit in less literal, didactic forms). But the subject and medium are surprisingly compatible. A comedy can broach otherwise tedious-sounding ideas with levity and self-awareness, and has more leeway to use contrived or exaggerated scenarios to bring concepts to life (like showing Chidi’s terror at repeatedly allowing the trolley to kill someone on the tracks, spraying their blood in his face and mouth). In The Good Place, the classroom scenes are not there to be preachy; they’re plot devices, sandwiched between jokes. When Chidi is discussing Aristotle in Season 1, Eleanor asks facetiously, “Who died and left Aristotle in charge of ethics?” “Plato!” a frustrated Chidi yells, pointing to the philosophy family tree on the board behind him.

There are practical upsides to a well-crafted, ethically curious show like The Good Place being on network TV. As The Atlantic’s Julie Beck pointed out last December, morality has become a justification fueling seemingly intractable divides between groups—a dynamic that’s especially visible in today’s polarized American political climate. Part of the appeal of “ethics classroom” episodes may be that people are interested in getting back to basics, to try and figure out how others think and reach decisions that may be very different from their own.

In this light, bringing digestible ethics lessons to the masses can be seen as a moral act, ensuring that those who don’t spend hours poring over Kant and Judith Jarvis Thomson are also privy to what’s gained from understanding how people think. If consuming the works of moral philosophers were the key to living a good life, “then the only nice, thoughtful people would be these hermitic, obsessive readers,” The Good Place’s Kristen Bell told me. “We can’t have that—we have to make it accessible. If you’re making people laugh while you’re teaching them, it’s the best way to do it.”

Indeed, The Good Place’s focus on ethics wouldn’t mean as much if it weren’t also remarkable in other ways—the performances, the top-notch writing, the wordplay and pun-laden jokes, the willingness to formally experiment with the sitcom genre. “I don’t expect or necessarily even believe that the average person is as interested in [ethics] as I am,” Schur told me. “While we’re discussing the issues that I want to discuss, I also know that I have a responsibility to the audience to tell a story. The goal is not to change the world; the goal of this is to make a high-quality, entertaining show that has good-quality acting.” On that front, Season 2 has certainly succeeded—but Schur still promised I’ll have plenty of new clips to show my students this semester.

Thirteen days after Sergeant La David Johnson was killed in Niger, and a day after Donald Trump boasted about his actions to console grieving families in contrast to his predecessors, the president called Johnson’s family Tuesday night.

It didn’t go well.

Representative Frederica Wilson, a Florida Democrat, was with widow Myeshia Johnson when Trump called. “She was crying the whole time, and when she hung up the phone, she looked at me and said, ‘He didn’t even remember his name.’ That’s the hurting part,” Wilson told MSNBC.

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“He said, ‘Well, I guess you knew’—something to the effect that ‘he knew what he was getting into when he signed up, but I guess it hurts anyway.’ You know, just matter-of-factly, that this is what happens, anyone who is signing up for military duty is signing up to die. That’s the way we interpreted it. It was horrible. It was insensitive. It was absolutely crazy, unnecessary. I was livid.”

Trump disputed that account in a morning tweet, claiming he had proof that Wilson was not telling the truth:

Democrat Congresswoman totally fabricated what I said to the wife of a soldier who died in action (and I have proof). Sad!

— Donald J. Trump (@realDonaldTrump) October 18, 2017

Trump did not say what his proof was; on several occasions, he has promised to produce recordings of conversations, only to fail to do so or admit he had none.

But Johnson’s mother Cowanda Jones-Johnson, who was also in the car, told The Washington Post, “President Trump did disrespect my son and my daughter and also me and my husband.” She declined to elaborate but told the Post that Wilson’s account was accurate.

In Trump’s defense, comforting people who have just lost a family member is difficult. They are, reasonably, upset and angry. (Dana Perino tells a story of George W. Bush being moved to tears by an angry mother.) Perhaps the president intended to say something about the sense of duty soldiers feel, and it was simply taken the wrong way.

But it’s difficult to give Trump too much benefit of the doubt, or to take seriously the White House’s statement that “the president’s conversations with the families of American heroes who have made the ultimate sacrifice are private.” By taking a question on Monday about his response to the Niger attacks as an invitation to brag about his outreach to military families, the president chose a fight about his methods of consolation, and chose to make it a public one.

On Monday, Trump told reporters he had written letters to the families of the four men who were killed in Niger, and that he intended to call them. He explained the delay, saying, “I'm going to be calling them. I want a little time to pass.”

Trump also claimed that his predecessors hadn’t done anything like that. “If you look at President Obama and other presidents, most of them didn't make calls, a lot of them didn't make calls,” he said. Later in the press conference, he backed off a little. “President Obama I think probably did sometimes, and maybe sometimes he didn't. I don't know. That's what I was told. All I can do—all I can do is ask my generals. Other presidents did not call. They’d write letters. And some presidents didn't do anything,” he said.

On Tuesday, Trump returned to the fight, saying Obama had not called John Kelly, then a Marine general and now White House chief of staff, after Kelly’s son Robert was killed in Afghanistan. “I think I’ve called every family of someone who’s died,” Trump said.

It is not just that Trump claimed, falsely, that his predecessors had insufficiently consoled grieving families of servicemembers. He also spent most of the last month wrapping himself in the flag while waging a fight with NFL players and other athletes who have kneeled or undertaken other protests during the National Anthem. The athletes say these protests are a way of bringing attention to police violence and racism. But Trump has insisted that the kneeling “has nothing to do with race. It is about respect for our Country, Flag and National Anthem.” The president has used his powerful Twitter account to pass along the idea that players who kneel are slighting the American military.

Even as he insists that NFL players are disrespecting the military, Trump did not make any public comment about the deaths in Niger until he was asked about it at a public press conference. Only after this prodding, and his bragging that he called every family he could, did Trump make a call to La David Johnson’s family. And when he did, he botched the call badly enough that he left Johnson’s widow in tears and his mother feeling disrespected. The president cannot be both the foremost patriot and the utmost consoler while at the same time dragging his feet on calls and angering military families.

What’s more, the Associated Press reports that despite Trump’s claims, he has not actually called the family of every fallen servicemember. In some cases, he has been very attentive. During a speech to a joint session of Congress in February, Trump celebrated Carryn Owens, widow of slain Navy SEAL Williams Owens, in a widely praised moment. Aldene Lee told the AP she had a touching call with Trump after her son Weston Lee was killed in Iraq.

But not everyone had that experience, the AP found:

After her Army son died in an armored vehicle rollover in Syria in May, Sheila Murphy says, she got no call or letter from President Donald Trump, even as she waited months for his condolences and wrote him that “some days I don’t want to live.”… The Associated Press found relatives of two soldiers who died overseas during Trump’s presidency who said they never received a call or a letter from him, as well as relatives of a third who did not get a call.

In summary, Trump spent weeks portraying himself as the defender of the flag and the military, then dragged his feet on responding to the deaths of soldiers, then lied about how he handles deaths, and then offended the family of a slain soldier. Meanwhile, intentionally or not, Trump has entirely derailed any conversation about the mission the soldiers were conducting in Niger.

Having decided to push his line on Tuesday and then attacked Wilson on Wednesday, the president now has a choice on whether to escalate or to try to calm matters. Trump has picked a fight with Gold Star families before, after Khizr Khan’s dramatic speech at the Democratic National Convention. (Notably, one common thread between the Khan and Johnson cases is that both cases involve families of color.) At the time, that seemed like political suicide, and Trump was the target of widespread bipartisan condemnation. Yet a few months later, he was elected president. And now, serving as commander in chief, the AP revelations and the Johnson family’s anger suggest he may soon again be feuding with the families of servicemembers killed in action.

During last year’s election—back before Washington Republicans awoke to the dangers of an erratic and impulsive commander-in-chief tweeting his way into “World War III”—there was a common argument deployed by party loyalists in defense of Donald Trump: He’ll behave himself once he’s in office.

GOP leaders generally acknowledged (on and off the record) that their nominee’s reckless campaign-trail persona was not suitable for the leader of the free world—but they insisted there would be a difference between Candidate Trump and President Trump. He would surround himself with competent advisers; lean on the good judgment of his running-mate Mike Pence; and mellow out as he confronted the full burdens of the office.

Pay no attention to the nervous nellies fretting about Trump’s temperament, said Senate Majority Leader Mitch McConnell at the time: “I think Donald Trump will understand when he’s sworn in the limits of his authority. He’ll have a White House counsel. There will be others who point out there’s certain things you can do and you can’t do. And it’s not quite like, you know, making a speech before a big audience and entertaining people. And I think he’s a smart guy, and I think he’s going to figure that out. So I’m not worried about it.”

Don’t get hung up on the frivolous personality issues, said House Speaker Paul Ryan: “It’s not just a choice of two people, but two visions for America”—and Republicans needed a president who would sign their conservative legislation.

Ironically, this sentiment was perhaps best articulated by Tennessee Senator Bob Corker—the Republican chairman of the Senate foreign relations committee who has emerged in recent days as the leading Republican voice sounding the alarm about the president’s volatility and incompetence.  In a 2016 interview with the Tennessean newspaper, Corker dismissed what he called the “caricature” of Trump as an impetuous man who should be allowed nowhere near the nuclear football.

“Once you come into the Oval Office, and you understand the tremendous decisions that you have to make and the magnitude of those and the effect that it’s going to have on the world,” Corker said, “I think that there’s a tremendous soberness and typically when you go in, you can end with lots of very highly qualified people around you.”   

Only now, nine months into the Trump presidency, are Republicans like Corker admitting how badly they misread the situation—and just how catastrophic the consequences to their wrongness could be.

“For many within the party, there was still a belief that once Trump became president, the weight of the job would cause some changes,” said Doug Heye, a Capitol Hill veteran who worked for House Majority Leader Eric Cantor. “This is not necessarily misguided—the presidency has, in one way or another, changed every previous inhabitant.”

Like many of his Republican friends in Washington, Heye said he was “swept up in Inaugural enthusiasm” at the outset of Trump’s term—convinced that the conservative administration the president was assembling would work with the GOP-controlled Congress to push through major policy victories. Instead, the Republican legislative agenda has all but ground to a halt, and the White House has remained in a near-constant state of chaos as a rotating cast of beleaguered aides tries and fails to rein in the mercurial commander-in-chief.   

These days, Heye told me, he’s feeling less sanguine: “I’ve never forgotten what one House member privately told me on the day before the Inauguration: ‘This won’t end well.’”

One of the main reasons so many Capitol Hill Republicans were confident that Trump would settle down and conform to the conventions of the office was that they had followed similar trajectories themselves. In the years since the Tea Party wave of 2010, scores of conservative lawmakers have arrived in Washington fresh off campaigns in which they gave provocative (and sometimes racially charged) stump speeches, made outlandish promises to their grassroots constituents, and generally pledged to act as anti-establishment insurgents hell-bent on disrupting the D.C. status quo.

They attempted to make good on those promises, at least for a while, with dramatic filibusters, government shutdowns, and fiscal-cliff brinksmanship. But over time, many of those same lawmakers have found themselves conforming to the conventions of Washington. They’ve realized that the responsibilities of their office—like constituent services, and dull committee hearings—do not lend themselves to the kind of constant drain-the-swamp revolution that they had campaigned on. And so, they’ve adapted.

“The Tea Partiers came to Congress and assimilated into the customs and norms of the body,” a senior Senate GOP aide told me. “They aren’t ‘go along, get along’ by any stretch of the imagination, but they generally act within the norms of the office. President Trump hasn’t assimilated from reality-show TV to the norms and traditions of the presidency.”

“You can argue that’s good; you can argue it’s bad,” the aide added, but “it puts a lot of people on edge … and that can be said for friend and foe alike.”  

Not everyone in the party is buying this, of course. Nick Everhart, a Republican consultant who has advised many Tea Party candidates over the years, told me anyone who watched the 2016 election unfold and thought Trump could emerge as a paragon of presidential restraint once in office was fooling themselves all along.  

“Very few people ever really change,” Everhart said. “And if they do, it takes an enormous amount of self-awareness and an acceptance of fault or responsibility. I mean, come on … there was no way anyone could believe they were going to get a different version of Donald Trump. There is only one version.”

This Feelings banner would look good in my living room.

You kids don’t understand. You could never understand.

You walk around in habitats of text, pop-up cathedrals of social language whose cornerstone is the rectangle in your pocket. The words and the alert sounds swirl around you and you know how to read them and hear them because our culture—that we made—taught you how. We were the first generation to spend two hours typing at our closest friends instead of finishing our homework, parsing and analyzing and worrying over “u were so funny in class today” or “nah lol youre pretty cool.”

That thing you know how to do, that cerebellum-wracking attentiveness to every character of the text message and what it might mean—we invented that. But when we invented it, we didn’t have text messages, we didn’t have Snapchat, we didn’t have group chats or Instagram DMs or school-provided Gmail accounts. We had AIM. We had AOL Instant Messenger.

“How did AIM work?” you ask. It was like Gchat or iMessage, but you could only do it from a desktop computer. (Since we didn’t have smartphones back then, its desktop-delimited-ness was self-explanatory.) You could set lengthy status messages with animated icons in them. And iconic alert noises played at certain actions: the door-opening squeak when someone logged on, the door-closing click when they logged off, the boodleoop for every new message.

“Those status messages,” you say. “What were they like?” As thunderous piano-accompanied art songs were to the sad young men of Romantic Germany, so were status messages to us. They might have a succinct description of our emotional state. Often they consisted of the quotation of vitally important song lyrics: from The Postal Service, from Dashboard Confessional, from blink-182, from Green Day, from The Beatles (only after Across the Universe came out), from RENT and Spring Awakening and The Last Five Years. (We didn’t have Hamilton back then—I shudder to imagine what 2008 would’ve been like if we had.) From Brand New or Taking Back Sunday if you were pissed at your crush.

And then there were, sometimes concurrently with the song lyrics, the pained, cryptic, and egocentric recountings of the emotional trials of the day. Our parents wronged us. Our best friend wronged us. Our chemistry teacher wronged us. But we never actually said that outright; instead, we hinted at their sins and petty slights through suggestion and understatement. That’s right: AIM was so fertile and life-giving that we invented subtweeting to use it. (Gen X-ers: Don’t @ me about how you all proto-subtweeted on CompuServe or Usenet or ENIAC or whatever.)

But status messages were just the golden filigree of the gorgeous AIM tapestry. AIM was everything to us. I really mean that: As 9/11-jittered American parents were restricting access to the places where we could meet in public—the sociologist danah boyd writes about this in her book, It’s Complicated—we had to turn to AIM. So AIM became the original public-private space. AIM was the mall. AIM was the study carrel. AIM was our best friend’s finished basement. AIM was the side of the library where everyone smoked. AIM was the club (see, Hobbes, Calvin and) and da club (see Cent, Fifty). AIM was the original dark social.

We didn’t ask for someone’s number, at least not then—an errant month of texting in 2005 could still cost $45, an exorbitant figure to the teenage mind—so we asked for their AIM. Or we got their AIM from someone else. (We usually had to tread carefully around the ask.) And over a couple months, we assembled buddy lists of our friends and teammates and crushes and classmates. Their away lights twinkled in a constellation of teenage social possibility.

“What did you even talk about?” All the same stuff you text about now. We asked if they had copied down the math problem sets. We asked how far you were supposed to read tonight in Gatsby. (Then we didn’t do the reading.) We complained about how Mr. O’Brien was mean to freshmen. We talked about the high-school musical, about the ending of Donnie Darko, about God and religion. We used lol to stand in not only for laughter or humor, but for any inarticulable mass of any emotion at all. We talked about who had sex with who. We talked a lot about love. We felt the world shiver and transform when our crush logged on and—boodleoop—started messaging us.

We made our first attempts, on AIM, of transfiguring our mysterious and unpredictable thoughts into lively and personable textual performances. We were witty and dramatic. We invented our online selves—we invented ourselves.

We got bored. Myspace and Xanga helped us set up temporary and ramshackle museums of our tastes. Then Facebook came along, with all the frisson of “only college students use it,” and we drifted there. Its pseudo-maturity and time-delayed interactions allured us. Our AIM status messages went to Facebook instead: It was where we mourned the end of the field-hockey season or the final showing of the winter musical. We posted photos of each other on Facebook and liked them and commented on them—but sometimes still chatted about them on AIM. We asked homework questions via each other’s walls. We wrote subtweety openings as our Facebook status, hoping our crush would comment there instead. Eventually Facebook had its own chat product too, and it made more sense to use that, or Gchat, or to just text.

And then we graduated from high school, and some of us moved far away, and as mobile semi-adults spread across campus, AIM didn’t make logistical sense anymore. Our usernames, laden with Harry Potter and Hot Topic references, were kind of embarrassing anyway. We got bored with the sweet and secret internet of our youth, and we began the hard adult work of building our personal brands, watching prestige television, and purchasing different forms of financial insurance (renter’s, medical, dental, life).

But for years AIM was still there—simply, silently, warmly beckoning for anyone to return. You didn’t hear it. You texted instead, or made Instagram stories. We texted instead, too. It’s how we navigate our lives now.

So now, on December 15, AIM will leave us forever. “AIM is signing off for the last time,” said the product team in a tweet on Friday. “Thanks to our buddies for making chat history with us!”

AIM showed us how to live online, for good and for ill. We all live our whole lives in text chains and group threads now. We plan every hangout, we send every news article, we proclaim every relationship in the river of text it taught us to sail. Honestly, that river has been a little scary lately. Instant messaging, once a special thrill, now sets the texture of our common life. But AIM taught us how to live online first. So AIM, my old buddy, don’t feel bad if you see us shedding a tear. We know what you have to do. For we’ll see you waving from such great heights—

“Come down now,” we’ll say.

But everything looks perfect from far away.

“Come down now,” but you’ll stay.

It’s tempting to talk of writing—the art of it, the craft of it, the lifestyle of it—as a kind of romance. Writers of serious literature (according to, at least, many writers of serious literature) do not simply type stark words onto blank pages; instead, they stare into an abyss and reach into their souls and find, if they are fortunate, the swirling fires of Prometheus. “We write to taste life twice, in the moment and in retrospect,” Anaïs Nin said, which is beautiful and true and also objectively incorrect: Writing is delicious work, but it is for the most part simply work. It’s often lonely. It’s rarely romantic. (I am not a writer of serious literature, but I am a writer, and I am writing this while sipping stale coffee from a mug that’s in bad need of a wash.) Writing is a craft in the way that carpentry is a craft: There’s art to it, sure, and a certain inspiration required of it, definitely, but for the most part you’re just sawing and sanding and getting dust in your eyes.

Because of all that, it’s refreshing—and it is also a profound public service— when writers of literature use their public platforms not just to celebrate literature, but also to put the creation of literature in its place. And it’s especially refreshing when writers at the highest levels of the field do that. One of them has been Kazuo Ishiguro, the British novelist and the latest winner of the Nobel Prize.

On Thursday, the Nobel Committee announced that Ishiguro is its 2017 laureate for literature—a decision, the Committee noted in its citation, that came in part because the author, “in novels of great emotional force, has uncovered the abyss beneath our illusory sense of connection with the world.” Almost immediately after the announcement was made, a story from The Guardian, written by Ishiguro himself and published in December of 2014, began circulating on social media. The piece is headlined, “Kazuo Ishiguro: How I Wrote The Remains of the Day in Four Weeks.” And it outlines, in great detail, how, indeed, the author overcame writer’s block—made worse by the banal demands of life itself—to summon the words that would become the novel that remains Ishiguro’s most famous contribution to the literary world.

A little bit Draft No. 4 and a little bit The 4-Hour Workweek, Ishiguro’s essay is, just as his fiction, at once spare and revealing. It outlines the period after Ishiguro’s second novel was published—a time that found the 32-year-old flailing professionally and having trouble being productive. So Ishiguro and his wife, Lorna, hatched a plan to jump-start his creativity:

I would, for a four-week period, ruthlessly clear my diary and go on what we somewhat mysteriously called a “Crash.” During the Crash, I would do nothing but write from 9 a.m. to 10:30 p.m., Monday through Saturday. I’d get one hour off for lunch and two for dinner. I’d not see, let alone answer, any mail, and would not go near the phone. No one would come to the house. Lorna, despite her own busy schedule, would for this period do my share of the cooking and housework. In this way, so we hoped, I’d not only complete more work quantitively, but reach a mental state in which my fictional world was more real to me than the actual one.

The goal was method writing, essentially: to create an environment, through force of will, in which the author and his story might be merged into one. It was a plan that demanded intentionally de-romanticizing the act of writing: “Throughout the Crash,” Ishiguro notes, “I wrote free-hand, not caring about the style or if something I wrote in the afternoon contradicted something I’d established in the story that morning. The priority was simply to get the ideas surfacing and growing. Awful sentences, hideous dialogue, scenes that went nowhere—I let them remain and ploughed on.”

It worked. Four weeks later, Ishiguro had a draft of The Remains of the Day. He tinkered with it still, yes. He added and trimmed and honed. For the most part, though, he had, in a concentrated month, completed a masterpiece. He’d spent his year of unproductivity, he notes, doing the background work of the writing—he’d read books by and about British servants, and histories, and “The Danger of Being a Gentleman”—and the Crash came at a time when Ishiguro knew what he needed to know to write what he wanted to write. All that was required was to sit down and do the work. (There’s a German word for that, and that word is Sitzfleisch.)

It’s a helpful reminder to writers of literature both serious and less so—and to anyone who might be intimidated by talk of writing’s metaphysical properties. “If you mix Jane Austen and Franz Kafka then you have Kazuo Ishiguro in a nutshell, but you have to add a little bit of Marcel Proust into the mix,” said Sara Danius, the permanent secretary of The Swedish Academy, explaining the Committee’s choice of Ishiguro. “Then you stir, but not too much, then you have his writings.”

It’s high, and accurate, praise—but it came only after Ishiguro was dedicated enough to sit down, put pen to page, and create those awful sentences, hideous dialogue, and scenes that went nowhere. The author, for four weeks, gave himself the freedom to be terrible—and now he has a Nobel Prize to show for it.