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The Good Fight

From AIDS to Zika, New Books Teach Kids About Conditions

Whether Crohn's disease, lactose intolerance, or childhood depression, a growing number of children books feature diseases and ailments as their subjects.

In her picture book Even Superheroes Get Diabetes, author Sue Ganz-Schmitt tells the story of a boy named Kelvin who hates the constant fingers pricks and shots required by his diabetes. But with the help of a (medically accurate) insulin pump and a mysterious doctor, he becomes Super K, flying around the world with the doctor delivering insulin to other kids with diabetes.

Ganz-Schmitt wrote and subsequently self-published the story in 2007 after watching one of the families in her kids’ playgroup cope with type 1 diabetes. The son, Kaden Kessel, was weeks away from his third birthday when the family got the news. Suddenly his parents, who also had a newborn, had to constantly monitor his blood sugar to keep him healthy.

Sue Ganz-Schmidt, author of Even Superheroes Get Diabetes.

When Ganz-Schmitt searched for a story about childhood diabetes, she found picture books that offered comfort to families but nothing that went beyond comfort to actually inspire them. After attending events with JDRF, an organization that funds type 1 diabetes research, Ganz-Schmitt says she was struck by how empowered the kids were in speaking about diabetes, almost like real-life superheroes.

“When I first saw it, I was kind of in awe because … even though the kid becomes a superhero, he looks like me in the book and it’s based off of my story,” says Kessel, who’s now 17. The book was so inspiring to Kessel that he used it in sixth grade to become a sort of diabetic superhero himself, bringing it into school to defend a young classmate from being bullied for his diabetes in class.

While most picture books introduce kids to story and language, perhaps imparting a few feel-good lessons along the way, ones about medical conditions serve a deeper purpose.

While most picture books introduce kids to story and language, perhaps imparting a few feel-good lessons along the way, ones about medical conditions serve a deeper purpose: Helping kids with a medical diagnosis understand what’s happening to their bodies or educating young readers about medical conditions a relative, friend or classmate might have. Not to mention teaching empathy.

Cover of My Grandpa Had A Stroke.

Some of these books have such niche appeal that they’re self-published. However, the American Psychological Association has a publishing imprint called Magination Press that specifically publishes fiction and nonfiction books for kids and teens around mental health issues, including medical diagnosis and also topics like mindfulness and learning disabilities.

“With any kind of physical illness or mental health issue, there’s an emotional, social and mental component to that,” says Kristine Enderle, director of Magination Press. Its medical-themed picture books include Danny and the Blue Cloud: Coping with Childhood Depression (by James M. Foley, DEd, 2016) about a bear learning “Feel-Good Rules” for dealing with depression, and My Grandpa Had a Stroke (by Dori Hillestad Butler, 2007) about a little boy who must learn to adapt after his grandfather has a stroke.

Danny and the Blue Cloud, a book that teaches kids about depression.

“We try to empower kids,” Enderle says. “We never really want to tell them what to do or how to feel or how to fix it, but we hopefully provide them with enough information and context that’s all rooted in evidence-based psychology.” To that end, most Magination Press titles are written by child psychologists, counselors or other medical professionals and include a note to parents on how to talk to kids about these issues and organizations they can tap for additional resources.

“We feel like there’s great power in this information and understanding the psychological and emotional side of things,” Enderle adds.

Frank Sileo is a New Jersey-based psychologist who’s written several picture books for Magination Press. He got the idea for his first picture book (published by a different publisher, who’s now defunct) from doing biblio-therapy with his young patients. “[With biblio-therapy] you read a book to a child about a particular problem, talk about the problem, and it validates their thoughts and feelings,” he explains.

Toilet Paper Flowers, a book about Crohn’s Disease.

When patients asked for a book about Crohn’s disease, Sileo couldn’t find one. Instead, since Sileo suffers from Crohn’s himself, he decided to write a picture book and Toilet Paper Flowers: A Story for Children about Crohn’s Disease was born. In it, a little girl with Crohn’s disease spends so much time in the bathroom, she makes toilet paper flowers and shares them with her friend.

Sileo’s second book was inspired by a patient who was bullied for being allergic to regular daily milk, so Hold the Cheese Please! A Story for Children about Lactose Intolerance. The story teaches kids about lactose intolerance (not to be confused with an allergy, as Sileo points out) and encourages them to accept each other’s differences. “It’s hard to be a kid and not have those things [like milk],” Sileo says, peppering his speech with medical puns.

Ganz-Schmitt’s second book, The Princess and the Peanut: A Royally Allergic Tale, also tackles food allergies. When she self-published the book in 2011, some parents erroneously believed that food allergies were made up (like Santa Claus or the Easter Bunny, Ganz-Schmitt quips) and didn’t understand their severity. “I was just so astounded what those families [with serious food allergies] had to go through,” she says. “Every bite was walking into a minefield for them.”

Full cover of Even Superheroes Get Diabetes

Ganz-Schmitt hoped by that educating children about food allergies, even those who didn’t have allergies themselves, those children will look out for siblings, friends or classmates who could suffer serious consequences from exposure to allergens. “‘Oh no, Mom, you can’t put peanuts in those cookies!’” she says. “They get it immediately and they really join the community of people who care for these children.”

As for Kessel–the original Super K–he’s now the JDRF walk ambassador for the Los Angeles Walk and is working to get the Latino community to join the walk and gain better access to medical care, similar to how his picture book counterpart helped others with diabetes.

He went through a rough period around age eight or nine where he wondered why he’d gotten a disease that doesn’t run in his family. Now he takes a more philosophical approach, pointing that the perseverance people with diabetics learn helps many of them excel in elite sports and business. “It’s hard and it sucks sometimes and none of my friends have it–all of that is true–but I feel like it’s been a blessing in disguise because the things I have learned from it,” he says.

And it all started with a book. For further reading with your kids on living with conditions, we suggest starting with these:

  •    AIDS: “The Gathering Tree” by Larry Loyie with Constance Brissenden, illustrated by Heather D. Holman, Theytus Books, 2006
  •    Alzheimer’s disease:Always My Grandpa: A Story for Children About Alzheimer’s Diseaseby Linda Scacco, PhD, illustrated by Nicole Wong, Magination Press, 2005
  •    Autism: “All My Stripes: A Story for Children with Autism,” by Shaina Rudolph and Danielle Royer, illustrated by Jennifer Zivoin, Magination Press, 2015
  •    Cancer:When Billy Went Bald” by Julie C. Morse, illustrated by Alexandra Higgins, Skyscraper Press, 2012
  •    Crohn’s disease: “Toilet Paper Flowers: A Story for Children About Crohn’s Disease” by Frank J. Sileo, PhD, illustrated by Martha Gradisher, Health Press (NA), 2005
  •    Depression: “Danny and the Blue Cloud: Coping with Childhood Depression” by James M. Foley, DEd, illustrated by Shirley Ng-Benitez, Magination Press, 2016
  •    Diabetes: “Even Superheroes Get Diabetes” by Sue Ganz-Schmitt, illustrated by Micah Chambers-Goldberg, Dog Ear Publishing, 2007
  •    Down’s syndrome:47 Strings: Tessa’s Special Code,” by Becky Carey; illustrated by Bonnie Leick, Little Creek Press, 2015
  •    Food allergies: “The Bugabees: Friends with Food Allergies” by Amy Recob, illustrated by 64 Colors, Beaver’s Pond Press, 2009
  •    Food intolerances:Woolfred Cannot Eat Dandelions: A Tale of Being True to Your Tummy” by Claudine Crangle, Magination Press, 2014
  •    Lactose intolerance: “Hold the Cheese Please! A Story for Children about Lactose Intolerance” by Frank J. Sileo, PhD, illustrated by Martha Gradisher, Health Press (NA), 2009
  •    Leukemia: “Chemo to the Rescue: A Children’s Book About Leukemia” by mother-daughter duo Mary Brent and Caitlin Knutsson, Authorhouse UK, 2008
  •    Heart defect: “Riley’s Heart Machine” by Lori M. Jones, illustrated by Julie Hammond, Guardian Angel Publishing, 2012
  •    Post-traumatic stress disorder (PTSD): “Why is Dad so Mad?” by Seth Kastle, illustrated by Karissa Gonzalez-Othon and “Why is Mom so Mad?” by Seth Kastle and Julia Kastle, illustrated by Karissa Gonzalez-Othon, both Tall Tale Press, 2015.
  •  Stroke: “My Grandpa Had a Stroke” by Dori Hillestad Butler, illustrated by Nicole Wong, Magination Press, 2007
Essays

The Kiddie Car Syndrome

Steering a loved one through illness can bring back to the surface childhood disillusionments long thought forgotten.

The summer I was three, my parents took me to Jones Beach to play in the sand and drive the kiddie cars around a small circular track.

I took driving very seriously, negotiating every twist and turn with elaborate care.  And my efforts did not go unnoticed.

“Look how well she drives!” cried my mother.

“She stays right on the track,” said my dad.

I was impressed by my own virtuosity.  In fact, I was so good that when we went back the next year, the kiddie car operator remembered me.

“There’s that little girl who never goes off the track!” he said.

Wow! I must be really good.  I tried not to let the exhilaration go to my head as I carefully turned the wheel, not once veering off the track.   And then, inexplicably (I must have suspected something) I took my hands off the wheel.  The car kept circling the track, maneuvering perfectly around the curves with no help from me.  I was crestfallen.  I was also pissed off.   The adults had given me the distinct impression that I possessed a rare talent for kiddie car driving.  And I had believed them!  Now, it turned out, I hadn’t been doing anything at all.  Nothing, nada; it was all an elaborate lie.

This experience left me with a lingering suspicion of adults.  What other fictions were they perpetrating?   I stopped leaving cookies out for Santa at Christmastime; the kiddie car outrage had turned me into an agnostic.  And the kiddie car syndrome – the illusion of control – was a thing of the past.

Or so I believed.

“I stopped leaving cookies out for Santa at Christmastime; the kiddie car outrage had turned me into an agnostic.”

For over ten years now I’ve been guiding my husband through various health crises including several strokes, two valve surgeries, and a series of life-threatening leg bleeds caused by his medication.  John, who was a college professor for fifty years before he retired, is more interested in the geneses of totalitarianism and the paradoxes in Gulliver’s Travels than the irregular beatings of his heart.  So I became his health advocate.

And I am a fierce advocate.  I foresee danger and circumvent it at every turn.  Once I ran into a hospital procedure room where John was about to have an angiogram.

“Don’t put the catheter up his left leg!” I cried.

John had been in the hospital for several days and I suspected, from something he’d said just before the procedure, that he’d had a bleed in his left leg during the night.

My dramatic announcement stopped the doctor cold, which was a good thing because I was right about the left leg.  John had sustained a bleed during the night, and putting a catheter up his newly-injured leg might well have resulted in a more serious bleed. Once again, with skill and foresight, I had narrowly averted disaster.

For the next five years, John’s health was relatively stable, which, in the language of medicine, is a beautiful word.  Then, two weeks ago, he had a seizure in the middle of the night.   I was completely unprepared for this and didn’t recognize it for what it was (a post-stroke seizure).   I fully believed I was witnessing my husband’s death.  After calling 911, I shouted to our twenty-year old daughter.  Together we managed to turn him over so he could breathe freely until the ambulance arrived.

John is home again now, and doing well.  But his seizure reanimated the painful disillusionment on that long-ago day in Jones Beach.  During the past ten years, I believed (or talked myself into believing) that I was single-handedly responsible for my husband’s health and well-being, vigilantly steering him around sharp curves and avoiding dangerous cliffs with diet, exercise, and close monitoring.  Now, once again, I’m reminded that I may be in the driver’s seat, but I’m not steering the car – at least not one controlled by a kiddie car operator who keeps me on track.  The car I’m driving now (metaphorically) is more like a bumper car.  I still manage to circumvent some collisions, even some dangerous ones.  Those I don’t avoid I interrogate myself about endlessly.  What if I’d stayed to the outside track?  Could I have avoided that last bump?  What about the red car racing straight towards us?  Can I make a sharp turn and speed away?

In spite of my vigilance and John’s cooperation, there are bumps and jolts I have not been able to avoid.  Some have been more sharp than others.

People often say to me, “You’re doing so well with John!” or “I’m really impressed with how well you take care of John.”

To me, it doesn’t feel like I’m doing a spectacular job caring for John, because the outcome is not spectacular.  After all, inevitably, the ride will come to an end.  But for right now, I’m keeping hands securely on the wheel.

Illustrations by Shannon Wheeler.

Profiles

Building His Plane In Flight

After a spinal stroke partially paralyzed him, Chicago actor Michael Patrick Thornton doubled down on giving back.

Staring into the shadowed abyss of his audience, Michael Patrick Thornton, sweating under the spotlights, remembers the first time he had a spinal stroke… an event which partially paralyzed him, and helped make his theater what it is today.

“When I got sick, my parents would have lost their house if not for my actors’ union insurance. My father, who was a policeman couldn’t believe it.” Michael breaks into an imitation of his father’s thick Northwest-side Chicago accent. “Oh, they’re picking up the bills? Wow, my son really is an actor.” The audience laughs.

Michael, co-founder of The Gift theater, is an acclaimed actor and artistic director, but running a successful, profitable theater lauded for the quality of its acting and productions is far from his end game. He sees theater as humanitarian missionary work, promoting the guiding principle that keeps him on the stage: if not of the religious sort, certainly of the humanitarian. His main guiding principle in his work is simply: love. And that love is something Michael isn’t entirely sure he would be able to express in the same way if he’d never gotten sick.

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“The double dimples and the heavy-brow-big-blue-eyes combo of a rom-com protagonist…”

With the double dimples and the heavy-brow-big-blue-eyes combo of a rom-com protagonist, Michael exudes confidence, even as he sits in his wheelchair at the end of a panel of fellow theater owners. Tonight, Michael is speaking on a panel for directors of small “equity” theaters, or theaters that hire unionized actors. “Going equity” is hard for small theaters because it means paying actors more. His audience tonight is actors and directors who are interested in potentially going equity, but even among his fellow actors, Michael keeps his audience laughing, even when discussing boring details like health insurance. 

When the panel ends, audience members approach Michael to talk. He tells one man to open a theater, but to be “extremely intentional” about where he was going to place it. “We spend a lot of time thinking about what art we’re going to make as opposed to why we’re making it in the first place,” he said later. “I’m most proud that The Gift has honored and reawoken the imaginations of a lot of people in a neighborhood that a lot of people gave up on.”

Actually, The Gift’s contributions to Jefferson Park—the neighborhood Michael grew up in, and eventually decided to locate his theater in despite it being what he calls a “there be monsters” neighborhood— go beyond imagination, ranging from intensive apprenticeships for high schoolers to sponsorship of the local little league team. Michael believes the arts have been “playing for far too long to the affluent”, and that society disservices itself by failing to provide poor neighborhoods with spaces for art and expression. The “anxiety and perverse anger from the lower-middle class against the arts” he believe boil out of a “vague sense of being abandoned.” Indeed, excellence is only the means; Michael sees theater as a “tool to democratize the consumption of art.”

During his panel, Michael explained that while going equity required endless financial planning and fundraising, he learned to treat it as a form of creative expression.  The Gift’s main operating principle is love, and going equity, after having his and his parents’ lives saved by his own unionized actor’s insurance, seemed like the only way to enact this principle.  

The principle of love goes back to an experience Michael had while getting sick, which he likened to the Buddhist idea of “satori” in which the false world opens up to expose the real world. Just before slipping out of consciousness and into a coma he muttered, “there’s only love.” He says he still doesn’t understand what it means entirely, but it was what lead to the founding idea of The Gift: “What if we, as actors, chose to love and never give up on each other?”

Michael standing in front of The Gift.

Michael in front of The Gift.

Although The Gift’s first production was way back in 2001, the theater still operates true to its original model. Michael’s ensemble regularly trains together in disciplines they’re unfamiliar with; recent visiting teachers have been a clown and movement expert. The practice cultivates vulnerability and trust–necessary ingredients cultivate what Michael describes a “willingness to look foolish.” Off-stage ensemble building, he says, is what allows his actors to go to emotionally demanding places together. 

To choose The Gift’s current program, Michael asks his ensemble if there’s an existing play that can serve as a “Trojan horse” for “what we are feeling right now as humans on the planet.” By staging plays that address what might be considered America’s psychic wounds, Michael believes that theater can help heal them.

The actor would know. Theater was what helped him pull through when he had his first spinal stroke in 2003, two years after starting The Gift at 23-years-old. Michael came out of this initial stroke damaged, but still with use of his limbs. That didn’t last. Ten days later, he would have a second stroke, which left him unable to walk; it also took most of the dexterity in his left arm and hand.

After leaving the ICU, Michael spent about 5 months in an inpatient care ward for children, since the adult ward was full. He says the kids saved his life, because while the adults were acting like their lives were over, the kids could still play. It inspired him. It was no time at all before Michael had returned to work, holding auditions inside the inpatient facility itself, while consuming play after play, looking for his next production. 

But while Michael tried not to let his new reality get him down, there were still psychic wounds to deal with. One of the most difficult aspects of dealing with his strokes  was that while doctors could assure him that he hadn’t caused them, they couldn’t tell him what had.“ We are creatures that need narratives, contextualization,” Michael says. “Especially when traumatic, black-swan events happen.” 

Consequently, Michael began to have regular panic attacks… attacks which exhibited the same symptoms as his strokes. This created a feedback loop of terror. Any small pain would make Michael think he was having another stroke, which would set off a stroke-mimicking panic attack.  “It was only until I stopped caring about the narrative that it went away,” he says.

It was theater’s Trojan-horse outlet to heal psychic wounds that finally allowed Michael to move on. At his “most fragile” point, Michael was playing Judas in the play Last Days of Judas Iscariot by Stephen Guirgis. In the play, there’s a scenew here Judas is frozen in a catatonic state, believing he’s in hell. He asks Jesus, “why didn’t you make me good enough so that you can love me?” It gave Michael the chance to ask the question he had never allowed himself to ask in life: “Why?”

The safe outlet to ask that question in the context of the play “was huge.” He stopped having panic attacks. Michael hadn’t allowed himself to ask why because he knew “it was just a hamster wheel; there’s no answer.” He states, slowly, deliberately: “And if you have one, it’s bullshit, because you’re choosing one story over another, and I can think of nothing more arrogant than to presume you know why something happened.”

Instead, he says, “there’s a tremendous value in choosing to live in a state of unknowing.” The deepest creative capacities, he insists, can only be reached during improvisation. Ultimately, Michael’s life philosophy is just what he told the theaters considering going equity. “Take the leap, then build the plane in flight.”