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The Cat Hotelier

Taking care of up to 80 cats isn't easy, especially when you're managing type 2 diabetes.

Becoming the proprietor of a luxury cat hotel wasn’t quite what UK-born Kevin Prince had in mind when he emigrated halfway across the world to New Zealand, but that’s exactly what he ended up doing.

Kevin, a self-proclaimed animal lover, bought the hotel and the house that went with it when he moved to “the land of Middle Earth” in 2007. For nine years, his home was a hop away from the hectic environment of a booming cat hotel.

“In a busy week, we could have 80 cats staying, all with their own unique needs and personalities,” says Kevin. “And dealing with pet owners–who have their unique needs and personalities–is an art form in itself!”

In the wake of the devastating Canterbury earthquakes in 2011, Kevin and his partner expected some traumatized pets to arrive, while owners left town for respite from ongoing aftershocks, or looked to relocate. But Kevin says most of the animals were far calmer than anticipated.

“The owners would tell us how stressed out the cats were, but they soon settled in. Cats are extremely resilient, probably more than we give them credit for.”

Kevin Prince.

Kevin says dealing with the human side of things is far more challenging. He describes the rituals of “drop-off” with amusement, with some owners spending up to half an hour explaining in close detail their cat’s every need… and providing handwritten sheets of instructions too.

“People are extremely particular when it comes to their animals, which isn’t surprising. Sometimes it gets amazingly detailed. We had someone describe exactly how their cat needed its meals: A small pile of meat in the middle of the bowl, biscuits around the bowl and four–four, not five, not three, four–treats placed on top of the meat. Anything else was unacceptable.”

Living literally “on the job” made work/life balance a little difficult, providing some unique challenges for Kevin, who has Type 2 Diabetes.

“Because you live onsite, you never really get a break. People would turn up at the house at all hours, because they figure you’re there, so you’re available.”

Diet is a major key to managing this sort of diabetes, and with long, busy days at the cattery, Kevin found himself missing meals, eating late, or being too tired to cook proper, nutritious dinners.

Kevin’s diabetes was discovered by accident. He also suffers from a condition known as Non Alcoholic Steatohepatitis, or Fatty Liver Syndrome. During a routine blood test, doctors discovered he had a reading of 22 on the diabetic blood sugar scale. That reading should usually be between four and six.

“’You’ve got the liver of a sixty-year-old alcoholic, with none of the fun,’” my doctor told me,” Kevin says. That meant he had to make some radical changes in his diet in order to manage his blood sugar and mitigate some of the risks that come with Type Two.

Kevin Prince’s own cat, Guido, with her beautiful eyes.

He says it’s much easier to spot the lows in blood sugar than the highs, though both can be equally dangerous.

“When I’m low, my hands start to shake, and I know I have to eat something quick. But the highs… well, you just feel good, so you don’t necessarily see it.”

He says it’s really important to have realistic support when you’re trying to make health and lifestyle changes.

“My last doctor was like; you’re diabetic, you’re bad, if you don’t do these things, you’ll die tomorrow. Whereas now I have someone who says; “Ok, here is where we’re at. How did we get here, and where do we want to get to next?”

Kevin’s biggest concern is losing his eyesight, something that is a risk for many people with both types of diabetes.

“I know that it’s my liver that’s probably going to kill me,” he says matter-of-factly, “…but I’m hyper conscious of changes in my eyesight. That’s what scares me.”

“If you’re having a lot of sugar at once, every time you hit that peak, you can end up with another burst blood vessel in your eye. And that doesn’t really recover, especially if you just keep pushing it with your diet.”

At home, Kevin has two dogs and three cats keeping a close eye on him, and his dinner. He says none of the animals had a problem living onsite at the cattery, and some of them even helped out.

“Zoe’s the boss, she’s a ten-year-old tortoiseshell. Then there’s Pumba, a black moggie, and Guido, a Manx cat – they’re both five. The dogs are Ollie, a seven-year-old Affenpinscher, he’s the father to Vera, she’s three. The dogs spend their times avoiding the cats. They know their place in the pecking order!”

Guido in particular played an active role in meeting and greeting the cattery clientele.

“Guido used to wait in the dark for people coming to the cattery, then leap out at them,” says Kevin. “They’d try to get past but it’d be like that dance in the street, when you meet someone coming the other way and you both go left, then both go right. You just couldn’t get past him.”

Pumba has the same demanding personality. “If you don’t give him enough attention, he’ll sit on the back of the chair and bite your hair – it really hurts, he’s a right bastard!”

Unfortunately, Kevin sold the hotel in February this year, but has pursued a career in accessibility, which he’s very passionate about. He’s currently working for the local City Council, helping ensure that government resources and services are accessible to everyone who needs them, and is a trustee on the board for Deafblind New Zealand.

These days, Kevin Prince no longer works as a cat hotelier, but he’s a trustee on the board of DeafBlind New Zealand.

“Technically I work in IT, but I’ve always been more interested in the people side of things. And accessibility: I have a very holistic view of that.”

“A while ago, I was helping a woman with low vision. She was studying, but she could only do about twenty minutes at a time before she was in pain. I observed how she was using her computer, hunched up, sitting on a dining chair. The problem wasn’t her eyes–it was her back and the way she was sitting. Once that got sorted, she could study for two hours straight.”

Working nine-to-five means Kevin now has more time, and energy, available to exercise and eat well.

“I loved the cattery work, but this gives me the opportunity to both help others, and to look after myself–to actually make and eat good meals, to get out for a walk. I lost my father when he was only 66. I don’t want to go down the same road.”

Plus, he gets to spend more time at home with his own menagerie.

“Having three cats and two dogs always provides occupation and entertainment!”

Profiles

Keeper Of His Own Animal Kingdom

John Hiltunen, who has diabetes and dyslexia, never made art at all until he was 54. Now his weird and wild collages are the toast of the art world.

Wearing starred-and-striped suspenders over a white t-shirt, artist John Hiltunen points to a small chest of drawers next to his workspace, housed in a cavernous former auto-repair shop in downtown Oakland, California: “Bodies go in this drawer; heads go in this one,” he says. Piled on his desk are glossy magazines—Vogue, GQ, Glamour, National Geographic—plus animal-themed wall calendars and patterned wallpapers.

Working out of Creative Growth Art Center—a nonprofit that serves more than 160 artists with developmental, mental, and physical disabilities—John spends hours decapitating images of fashion models with scissors, then affixing their bodies to cut-outs of animal heads. Placed against scenic backdrops, these stylish chimeras fuse self-serious, airbrushed fashion photography with animal kingdom oddities: A guinea pig struts in a sequined tunic; a snowy owl carries a leather handbag through the woods; a ginger cat models a silk ball gown; a Yorkshire terrier strikes a pose in a frilly white pantsuit.

John Hiltunen. Photo: Hannah Hughes

Since joining Creative Growth in 2003, John has become an unlikely art world darling. His animal-human mashups are routinely featured in contemporary art fairs like NADA Miami, the Independent, and Frieze New York. Talking Heads frontman David Byrne and artist Cindy Sherman are among the high-profile collectors of his work. In 2012, John’s work was the focus of a major group exhibition at Gallery Paule Anglim, San Francisco. In New York, he’s exhibited at White Columns Gallery and Rachel Uffner Gallery.

He got a late start: Until age 54, “I had no idea that I could do art,” John says.

Until age 54, “I had no idea that I could do art,” John says.

Born in Sturgis, Kentucky in 1949 and raised in Omaha, Nebraska by his cement contractor father and homemaker mother, John has struggled with severe learning disabilities since childhood. “My mom supported me a lot, but I never had any education,” he says. “I had problems with my eyes and with dyslexia. A bad case of that. Every time I tried to learn to read, I got a bad headache.”

When John was ten, his father died. After that, “everybody was telling my mom to send me away,” he says. “Back then, they thought it was a good idea to send disabled people away.” Eventually, his mother sent him to an institution in Brownsville, Texas. “They started giving me a lot of pills, drugging me a lot,” he says. “I really didn’t care for it. I remember being all druggy. I got to a point where I just didn’t take the pills. I’d hide them in my mouth and spit them out. They didn’t know that. They weren’t treating people right. So I finally called my mom and told her about it and she got me out of there.”

John moved to the Sara Center, a residential center for people with disabilities in Fremont, California, and stopped taking medications, except to manage his diabetes. Compared to the hellish institution in Brownsville, Sara Center was idyllic. There, he met his wife, Carol. “Basically, it was love at first sight,” he says. “We were married up on a hill.” At Sara Center, the couple lived independently, “getting along real well.”

But for decades, “I didn’t have any hobbies,” John says. “[I was doing] nothin’ much, just sitting in the house, watching TV, getting bored. I never really looked at art.”

That changed in 2003, when a friend referred John and Carol to Creative Growth. There, John discovered woodworking, rug-making, and ceramics. He and Carol also found a solid group of friends, who call him “Grandpa.”

“John’s kind of the patriarch in the community,” Creative Growth studio manager Matt Dostal says. “He brings in elaborate lunches for everybody in his friend group—a big cooler full of huge amounts of fried chicken and potato salad and diet Cokes.”

At the Creative Growth Art Center, Hiltunen is something of a community patriarch. Photo: Hannah Hughes

At first, John was critical of his visual art, and didn’t feel like he had a natural knack for it. But in 2007, visiting artist Paul Butler brought his traveling “Collage Party” to Creative Growth, inviting the artists to participate in a day-long cutting-and-pasting frenzy. “Collage can be really accessible for people who have a hard time drawing or painting,” Dostal says. “It’s a good gateway practice.”

At Paul Butler’s Collage Party, John made his first animal-human mashup. It was an instant hit. Fusing fashion and animal photography became his go-to practice. Though most of his works are variations on this same theme, they’re never formulaic; each collage introduces an exotic new hybrid species. His creatures often look somehow more natural than the chiseled, Photoshopped bodies that fill the pages of glossy magazines; it’s as if John is on a mission to tear off fashion models’ suffocating human masks and free the wild animals hiding beneath.

John is on a mission to tear off fashion models’ suffocating human masks and free the wild animals hiding beneath.

“His collages are in some ways incredibly simple, but there’s a really elegant subtlety, thoughtfulness and humor to the way he cuts out the images,” Dostal says. “They look so happenstance and poetic.”

“I just like switchin’ things around,” John says when asked why he gravitates toward collage. In recent years, John has expanded his practice to include 3-D art books and animated video pieces, such as “A Call to Kill,” in which an Australian Silky Terrier driving a sports car thwarts a villain’s plot to blow up the Golden Gate Bridge. Most recently, John had a solo show at Good Luck Gallery in Los Angeles’ Chinatown, where four pieces sold within the first two hours of the opening.

Photo: Hannah Hughes

The success hasn’t gone to his head. “He doesn’t care what people think,” Dostal says. “He just wants to create his art.”

On June 14th, John and Carol celebrated their thirtieth wedding anniversary. “I’ve had a good life,” John says. He recalls how, in 2013, after being nominated by esteemed British curator Matthew Higgs, he won the Tiffany Grant—a biennial award given to American contemporary artists who demonstrate unique “talent and individual artistic strength” but haven’t yet received widespread recognition. Selected by a jury composed of artists, critics, and museum professionals, awardees receive an unrestricted check for $20,000.

John spent his prize money on a three-day trip to Disneyland with his wife and all their friends.

This is part two of four of Folks’ series of profiles of some of the amazing artists at Oakland’s Creative Growth Arts Center, which serves artists with developmental, mental and physical disabilities.

Profiles

Parenting In Public With Love And Lots Of Insulin

The Dale family is using the power of YouTube to shine the light on type 1 diabetes.

Family vlogging has changed the way the world parents, and no one better shows how than the Dale Tribe. The Dales–Amy, Jon, and kids Anna, Eli, Shae and Aspen– have enjoyed a groundswell of popularity since they started uploading little pieces of their lives to YouTube in 2013. Today, they have almost 100,000 subscribers… a platform the Dales use to try to raise awareness for type 1 diabetes.

No one in the Dale family had grand aspirations of YouTube fame when they started posting their family videos online. For Amy, in fact, the decision to upload videos of her kids to YouTube was purely practical. She laughs: “I thought ‘I suck at scrapbooking, maybe this is a way to keep my family memories.'”

Amy’s first videos are endearingly primitive: the first one’s even shot with a vertical iPhone camera. As they go on, though, she gets better and better at putting them together, showing the individual personalities of each of her kids in a charming and comforting way. Anna’s artwork, Eli’s freerunning, Shae’s love of acting: they all get equal space to express themselves.

The Dale Family.

The love between family members is obvious in these clips. The Dales aren’t doing anything special–carving pumpkins, going camping–but there’s already something compelling there. Unlike other YouTubers, the family seems really present and in the moment. They’re not performing, just living, and in an era of hyper-calculated social media, it’s refreshing.

Although Jon was supportive of what Amy was doing on YouTube, he was a little too standoffish. “My initial reaction was ‘this is fine for you to do, just so long as I don’t have to be too involved,” he remembers. Complicating matters was his career in social media strategy for big brands. “I wasn’t sure being goofy with my family was good for my personal brand,” he says. “A couple of years in I sort of saw that vlogs were having a positive influence and I decided to become more supportive and get involved.”

“It was a real difference after he got involved,” Amy says. “Before it was me on my iPhone and it was… not awesome.”

A candid moment with the kids.

Jon brought a little professionalism to the project, making the editing tighter and the narratives a little clearer. The honesty and authenticity was still there, it was just easier to digest.

The turning point for the family came with the diagnosis of their daughter Aspen with type 1 diabetes in January of 2016. She had been feeling sick and losing weight, and the family brought her in for some tests. Amy filmed the day, taking the kids to the mall and BuildABear Workshop while they waited for Aspen’s blood tests to come in.

After the tests, an ambulance came to pick up Aspen and hooked her up to an IV drip for insulin to bring her elevated blood sugar down. It’s a tough watch, but the little girl takes it like a champ. They learn about all of the parts of managing diabetes – checking blood sugar, injecting insulin, learning the signs of highs and lows – and we watch them do it.

The family didn’t upload a video that week, until Aspen came home.

“(Working on the video) was almost therapeutic to me,” Jon says. “It was my birthday when she was diagnosed and we went to the ER that night. It was 4 days later that we got back home. I sat down the next day, we had this footage and I almost in a daze sat down and edited that episode. We had this whole world of people that were trying to understand what had just happened to us, and I thought if we put a vlog up, I don’t have to have this same conversation with fifty different people about what type 1 is.”

As the father of a type 1 diabetic myself, that video brings me back with whiplash speed to my son’s diagnosis: the feeling of panic and confusion as you learn that your lives will never be the same. Amy’s emotions in the moment are hard for me to watch, but the honesty with which she reacts to it is really inspiring. The Dales’ video struck a chord, and Aspen’s diagnosis became their second most popular video to date.

When your kid is first diagnosed, you’re left totally adrift. But the interesting thing about type 1 diabetes is that there’s a powerful community around the world reaching out to support each other. My son Henry didn’t start making videos to help other kids until two or three years after his diagnosis, but having Aspen’s very first moments captured on video is incredibly powerful for other kids experiencing that panic and confusion. She’s a strong kid, and her strength can help other people.

Since the diagnosis, Aspen’s diabetes has become just another part of the Tribe’s life. The family has incorporated blood sugar checks, insulin doses, pump changes and the like as just another part of their daily routine, showing the world that living with type 1 is just another sort of normalcy.

The diabetes community is a powerful one…

It’s expanded their world in multiple ways. The diabetes community is a powerful one, with families and friends supporting each other through the ups and downs of the disease. The success of Aspen’s diagnosis video bolstered their channel, massively increasing their subscriber numbers. Her diabetes is treated with the honesty and openness that they bring to all of their videos, and while it’s a major part of the family’s life it’s not the sole focus.

In a world that’s becoming increasingly concerned about the ethics of YouTube parenting, uploading your children’s most intimate moments for all the world to see can be a controversial decision. In particular, the recent drama with a Maryland family who had children removed after abusive prank videos  they’d been making came to light has painted family vlogging in a pretty bad light.

But the Dales have a strict policy of what makes their YouTube channel a safe space, both for their children and the people who visit them. “We basically have the approach that any time our kids don’t want to be included in anything they don’t have to give a reason why, they just say ‘Hey, we don’t want this filmed.’” Jon says. “For any reason they can ask at any time, or ask during post if there’s something. And we know it works, because the kids will exercise that. Whether our son feels like he has a zit or our daughter has a bad hair day, we don’t push back. It’s not a negotiation.”

Yet bad hair days aside, one thing Aspen has continued to be comfortable sharing with the world is details of her Type 1 diagnosis. Diabetes isn’t the goal of the channel–the Dales say the only real goal is to show the world how they get along, because they believe it’s “good for people to see how a healthy family operates”–but it’s not something Aspen is afraid to show the world.

The end of Aspen’s diagnosis video has her facing the camera with Jon. “We’re excited about this new journey, and Aspen has been super, super brave, haven’t you?”

She nods. The video ends, and another day begins.

Profiles

Microsoft’s Cybernetic Diabetic On How Tech Can Help End Type 1

After being diagnosed with Type 1 diabetes at age 21, Scott Hanselman became an early pioneer in using technology to hack his health.

Imagine you’re on a long-haul flight, from, say, LA to New York. It’s very important that the airplane doesn’t fly too high, or you’ll get altitude sickness, or too low and risk a crash. But you only get to check your instruments a limited number of times, and you’ve got to keep everything on an even keel for the whole flight.

That’s what having Type 1 diabetes is like, according to Scott Hanselman. He wrote The Airplane Analogy, a useful metaphor which explains how diabetics manage their blood sugar levels.

“Food raises blood sugar – altitude.  Insulin lowers it.  Non-diabetics don’t have to think about altitude, as you all have a working pancreas (autopilot) and don’t sweat altitude,” says Scott.  “Diabetics, on the other hand, have to constantly wonder if they are at a safe altitude.  Staying at a consistently high altitude – high blood sugar – will eventually make you sick; while a low altitude – low blood sugar – will kill you quickly.”

Scott Hanselman has been trying to hack his diabetes through tech since he was 21.

Scott was diagnosed with diabetes at 21, and has been using technology to “hack” his health ever since.

“That’s the first thing every techie does once they’ve been diagnosed with diabetes,” says Scott. “They try to solve the problem with software or hardware.”

Scott says that that “problem” equates to a billion-dollar industry. But no one’s solved it just yet.

In addition to his day job is as a community manager for Microsoft, Scott records three weekly podcasts, runs a blog that’s been going for thirteen years, travels to conferences around the world, spends time with his young family – and looks at ways to manage his health through tech.

“I have been trying to use tech to solve my diabetes for 20 years.”

“I have been trying to use tech to solve my diabetes for 20 years,” says Scott. “Back in 2001 I did a “poor person’s connected sugar meter” experiment that I wrote up. This is before mobile internet really went mainstream – so I’ve been thinking about this a lot and for a long time.”

GlucoPilot was an early diabetes app written by Hanselman for the Palm V.

That experiment took place after Scott developed GlucoPilot, a diabetes management system for the PalmPilot that allowed diabetics to log their blood sugar levels, insulin, and carbohydrates, and view reports based on the data.

Scott went on a cross-country trip – the “experiment” – using GlucoPilot in conjunction with an insulin pump and a blood sugar meter to keep track of his health as he traversed timezones. The technology was useful, but it still required exporting, uploading, and moving data between three devices, which Scott described as a tediously manual process.

In a more recent blog post that reflects his reasons for writing GlucoPilot, he said “Diabetes sucks deeply, the technology we are given to manage it sucks deeply, and we are pretty much tired of waiting.”

GlucoPilot gained tens of thousands of users, in four languages, and Scott sold the technology. Unfortunately, it’s now out of date, but “the ideas behind it – how to remotely and mobile manage blood sugar – live on in hundreds of apps, and open source projects like Nightscout.

“Diabetes sucks deeply, the technology we are given to manage it sucks deeply, and we are pretty much tired of waiting.”

“These are timeless problems that any diabetic engineer will try and solve,” says Scott.

For the past seven months, he’s been testing out an “artificial pancreas;” a way of using technology that he calls “body hacking.” It involves being physically tethered to three medical devices 24 hours a day.

“The Open Source Artificial Pancreas is like a “Cruise Control” for diabetes. It automatically keeps you in the lane, generally, similar to a Tesla. It won’t bolus for you or know you’ve eaten, but if you fall asleep (for example) it will quietly try to get you back to that magic 100 number.”

“I believe that now we are inside a five-year window where we will make Type 1 Diabetes much much easier to deal with,” Scott says. “I’m hearing good things about islet cell transplants, for example.”

Being a father and husband is also part of Scott’s hectic schedule.

“Humans (myself included) can be very lazy. I want them to build up their reservoirs of self-esteem and “I can do it” so they don’t accept the defaults”

Maybe because of the need to focus so carefully on his health, he’s an advocate of mindfulness, something he’s trying to teach his children.

“When I was younger I didn’t know the term ‘mindfulness’ so I said “don’t live your life by default.”

I’m doing my best to teach my kids this, hopefully by example. Yes there are things they can’t change about themselves, but the one thing they can change (or try) is how they think and how they act. I catch them saying things like “I’m not good at math.” They have tapes that are already starting to run in their little heads that feed them negativity and inaction. The defaults are just doing nothing. Humans (myself included) can be very lazy. I want them to build up their reservoirs of self-esteem and “I can do it” so they don’t accept the defaults.”

Meanwhile, Scott continues to look for ways to hack his health through tech.

“Most people give very little thought to advances in medicine beyond the never-ending search for the cure for the common cold,” he wrote. “But wireless technology promises to free people with medical conditions most of us never have to deal with…. from the ropes holding their lives back.”

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
Health & Fitness

The Tale Of The Long Island Mariner

Type 2 diabetes and weekly dialysis won't stop Peter Lamia from hauling in the bluefins whenever he can.

With his gruff voice, stocky build and full white beard, Peter Lamia could’ve have strolled out of the verses of the Rime of the Ancient Mariner. And like the salty old sailor from the epic Coleridge poem, Peter has no shortage of tales to tell about his time at sea.

If Peter looks the part of a storybook sailor, it could well be down to a lifetime spent fishing the Atlantic waters. As a child, his uncle took him fishing on open boats off the Long Island coast, where he still lives. When he was twenty two, fishing became a career.

It all began one January, when a bout of pneumonia forced him to take some time out of his political science studies at Columbia University. As he slipped further and further behind with his college assignments, he decided to find some paid work to tide him over. A friend suggested he head down to the docks at Long Island’s Captree State Park, to see if any of the charter fishing boats needed crew.

Peter Lamia acting as mate on the Fishfinder.

“I got there late, most of the boats had already gone out fishing already. But one guy was still there working on his boat. I said ‘do you need any help?’, and he said, ‘can you fillet fish?’ and I said I couldn’t, then he said, ‘if I put a knife in your hand will you cut yourself?’ and I said ‘I don’t know,’ and he said, ‘you’re hired!’

Peter didn’t go back to college. Instead, he found another education on the ocean. That first captain was Eddie B. Although he was a great teacher, showing the young man everything he needed to know, he wasn’t the best boss, Peter remembers. The boat crew earned tips from the passengers who’d hire the boat for the day, and the captain had the “inglorious habit” of putting his hand into these earnings. One summer with a tip-skimming captain was enough, and Peter soon moved on to his next job: a bluefish charter boat.

Bluefish bite after dusk, and Peter’s shift was 7pm till 4am. It was arduous work–which wasn’t all due to the fishing. “The kind of people that night fishing attracted back in the seventies were a little rowdy, and they had a tendency to have a few too many beers on their fishing trip, and it could get ugly.”

Since they run in large schools, bluefish are fairly easy to catch. However, adult fish are strong, fast and aggressive, with low-slung jaws and sharp teeth which won’t hesitate to snap at careless hands. An adult can easily weigh twenty pounds–a sizeable catch for any angler.

“You’re talking about fish that could take your finger off, fifty people on a boat with fifty lines in the water… tangles, screaming, yelling, and confusion.”

“Bluefishing can be a nightmare: you’re talking about fish that could take your finger off, fifty people on a boat with fifty lines in the water, and twenty people trying to get their fish onto the boat at once. There were tangles, screaming, yelling and confusion.”

Almost forty years later, Peter looks back fondly on those early days out on the Atlantic. While he still gets out whenever he can, his life has been different in the last ten years, since a Type 2 diabetes diagnosis sent his health downhill.

His first inkling something might be wrong was a good twenty-five years ago, when a blood sugar test came back on the high side. But he ignored the symptoms – an easy thing to do with diabetes, he says.

“That’s the horrible part about diabetes: there are no symptoms, you feel nothing. But even though you feel nothing there’s a degradation happening within your system.”

Ten years ago, in his early fifties, Peter returned to Columbia to finish the political science degree he’d begun three decades earlier. He’d always regretted not seeing it through, and at the urging of his girlfriend Abby he took the entrance exam, placing in the top two percent of students. The rest, he said, just fell into place. During those first few months of study, he went for a checkup at the campus clinic. He wasn’t feeling great, and the nurse took a blood sugar test.

“My result was off the chart, I blew past the highest number. The woman that did that test said, ‘I can’t believe you’re not in a coma.’”

Lamia shows off some flukes on the Superhawk.

These days, Peter’s retired, but he still gets out on the ocean whenever he can. Unfortunately, fishing competes with other, more pressing matters: like twelve hours of weekly dialysis, and diabetic retinopathy, a common problem for diabetes sufferers, who are at risk from a host of eye-related diseases.

“One morning I woke up and it looked like a Rorschach test in front of my eyes, I was terrified. I went to the eye doctor and they told me it was blood leaking from my eyes.”

Doctors treated Peter’s eyes with laser treatment and steroid injections, but when these didn’t work, Peter went onto an Iluvien implant, a slow-release steroid which should last up to three years. The next step is a new kidney, which his brother has offered to donate.

That’s the horrible part about diabetes: there are no symptoms, you feel nothing.

Peter’s the stoic type, though, not one to complain or dwell on hardships. It’s hard to say whether this stoicism is a product of his years at sea, or an innate quality that naturally drew him to the kind of hard work you only find on fishing boats.

And those early saltwater days were hard, he remembers.

The Fishfinder II, looking for another school of bluefish before heading into the sunset.

“On the bluefish boat, I would get sick every night. I never threw up, but I’d get green around the gills. And since I was the new guy, I was the chum boy. The chum was in a five gallon barrel, a mix of ground up fish and blood. I’d take a ladle and spray it out every fifteen seconds onto the water, to create a slick to attract the bluefish. There I am, sick in the first place and every time I ladled it out, a little bit of breeze would spray some of the chum into my face.”

Like the Ancient Mariner, Peter has tales of ocean disaster. The most devastating involved an accident with a flat-bottomed clam boat.

“The boat had been hired for a charter cruise one night. This teenager had a clam boat, he and his friends were playing chicken with our wake, jumping over the waves with the boat. They turned into us and buried the entire thing into the stern of our boat.

“One of the kids was never found. Another kid was thrown onto our boat. His head hit the rail coming in, he split his skull open. The charter we had that night happened to be doctors and lawyers, and the doctors used the boat’s garden hose to do an emergency tracheotomy to try and save him but the kid died.”

After a lifetime spent on the ocean, Peter still says he’d go fishing every day, if he could.

“The season has started and I’m dying to go out. Lovely, crappy, it doesn’t matter–I got rain gear. It’s not just the fishing, you’re out in an expanse of water and it’s just absolutely gorgeous. No place I’d rather be.”

Essays

Being The Ideal Diabetic

When you have Type 1 Diabetes, every day presents you with a choice: would I rather feel healthy or feel human?

It seems wrong, of course, to set “healthy” and “human” in opposition to each other, but chronic illness makes you look at the world in weird ways.

With diabetes, you might expect to find a positive relationship between good care and happiness–and to some extent there is–but at the same time, it isn’t so simple. Sometimes, taking care of yourself is mentally taxing, and comes with certain costs.

To tell you what I mean, I’ll have to tell you about having Type 1. The disease is a sinister thing that creeps in to alter every move you make, no matter how mundane. You wake up…

Actually, halt right there: it matters when you wake up, because the cocktail of hormones that your body releases in the morning messes with your blood sugar considerably. Sleep does crazy stuff to the endocrine system, so this becomes the first of many daily choices in which diabetes leans over your shoulder and breathes heavily in your ear. “When should I wake up?”

 

If your sleep schedule becomes irregular, your blood sugar can behave like a crazed dolphin, diving and leaping, diving and leaping. You must acknowledge this every time you want go out at night with your friends, watch a late sports game, or stay up with the brother that you don’t get to see enough.

In many cases, what the Ideal Diabetic wants to do clashes with what your human self would like to do.

Each time you consider your options, you’re excruciatingly aware of what an ideal diabetic would do. They would create a strict sleep schedule and stick to it. You’re so aware of that lurking persona that it becomes a full-on character: The Ideal Diabetic, or TID. In many cases, what this character wants to do clashes with what your human self would like to do.

Keeping this tension in mind, let’s continue our tour of a diabetic’s day. When it’s time for breakfast, stay vigilant: too many carbs will make your blood sugar scrape the sky, and you’ll feel sick. It can take hours and hours to pull yourself back down. This will damage your focus and productivity. (The Ideal Diabetic probably wouldn’t eat carbs in the morning.) You must push through it.

Say your job on this particular day consists of writing an article. This task (before, during, and after completion) will affect your biochemistry–perhaps dramatically. (My blood sugar is rising as I write this, probably as a response to the mild anxiety and excitement of writing.) You can never fully enter “the zone” and concentrate 100% on writing, because you must pay attention to your illness.

If you want a beer when you come home, have it, but keep a close eye on your sugar level. The diabetic body reacts strangely to alcohol: your blood glucose rises, crests (this can be nauseating); and crashes (this can be dangerous: The Ideal Diabetic wouldn’t drink).

 

Quotidian choices provoke a flurry of mental activity. Say you want to take a spontaneous weekend hiking trip. This is difficult, and your brain scrambles, “Can I do this? Do I have sugar handy? Will my companions know what to do if something goes wrong? How far will we stray from the nearest hospital?” The Ideal Diabetic would have planned the trip ahead of time.

Carry all of this knowledge with you. Stay up late to chat with a friend, but you’ll relinquish control of your blood sugar. Have a beer, but you’ll suffer doubly. Go on a spontaneous hike, but you could be chugging sprite and heading back towards the car after half an hour.

Above all, decide. Weigh these things in your mind: minor pleasure, minor suffering, your future death. Decide. Decide.

You see where I’m going with this. Diabetes–and I assume it has this in common with other chronic illnesses–makes you live inside a mandatory pleasure-pain calculus.

Here’s the problem: being the Ideal Diabetic becomes dehumanizing after a while. Vigilantly policing your disease allows it, in some small sense, to rule you. Each decision you make in favor of TID, even if you hardly notice it after a while, takes a small toll. Eventually those decisions conglomerate into something fairly heavy that you carry around with you.

Spontaneity, flexibility, and indulgence in small daily pleasures: all of these things contribute to feeling human. The Ideal Diabetic would have to curtail these elements of his behavior, and so, I’d contend, he wouldn’t be, in the fullest sense, human.

Spontaneity, flexibility, and indulgence in small daily pleasures: all of these things contribute to feeling human.

So again, the problem might be stated this way: do you want to feel healthy, or feel human?

It might be frivolous to try extracting a lesson from all this, but any order, even artificial order, stretched over experience, makes it easier to wake up each day and do the same stuff. With this in mind, what I’ve decided to believe is that self-care ought to privilege the self, and not the disease.

It seems obvious that becoming The Ideal Diabetic wouldn’t be worth it. Planning your days rigorously and keeping a hawkish eye on your bloods sugar might allow you to stash away a few more years of life (who knows?), but wouldn’t that life be a little more sterile, a little more defined by illness?

Perhaps it’s good to remain a little anxious–I’m not trying to argue for any kind of lax posture toward the disease–but that anxiety should remain a tool, a whetstone for your medical vigilance, not something that motivates you. Staying up late shouldn’t provoke undue anxiety, and having a beer with friends shouldn’t scramble your brains with guilt.

I try to tell myself that it’s okay to compromise. It’s okay to take a hike, eat a big bowl of spaghetti, or play basketball for three hours, as long as you don’t forget your diabetes completely.

Maybe I’m wrong. Maybe it’s better to make everything secondary to one’s self-care, and haggle for those extra years. I’m not sure.

What I’m sure about is this: there’s a psychological element in one’s struggle with a chronic illness, and sometimes the brain needs to rest. It’s better to avoid injecting every decision–about what you eat, when you wake up, where you go–with a sense of moral crisis. You can never pretend you don’t live inside the pleasure-pain calculus, but you can put down the calculator and try to enjoy yourself.

 

Essays

How Diabetes Made My Son Internet Famous

When Henry Jensen was diagnosed with type 1 diabetes, it opened up a whole new world of friendship.

Jensens have a hard time connecting to people. I talk to my dad maybe twice a year, and it’s not because I don’t love him. We just don’t talk. We’re taciturn Norwegians who float on our own lonely river until the ice swallows us.

My son Henry’s like that. He has a hard time looking people in the eye. Conversations with him are either clipped and abrupt or derail into animal facts or Batman trivia. My wife and I joke that he’s probably about 1% autistic. It’s like a party garnish.

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Free hugs.

Henry was diagnosed with type 1 diabetes at the age of five. After three nights of constant pissing and a first-time-ever request to stay home from school, we took him to a nurse practitioner who was also a family friend.

It didn’t take long before we were off to the hospital where our new world was mapped out for us, one insulin shot at a time.

Type 1 diabetes is isolating. It makes the simplest things hard. When Henry eats lunch at school, he can’t just sit down with his friends. He needs to go wash his hands, prick his finger, test his blood, and give himself the appropriate amount of insulin. By the time he’s done, most of his friends–the ravenous, peanut-butter crusted wolves that they are –have choked down their lunch and are off to the playground.

When it’s somebody’s birthday, he can’t just eat the Funfetti cupcake. He needs to know how many carbs it is. A second slice of pizza? Hold on, more insulin. Blood sugar drops during phys ed? He needs to sit out for a bit and eat some Smarties. Sorry, team.

So for a child –a Jensen–already somewhat at odds with the world to have an additional thing pushing them away is hard.

I’m not saying that his friends ostracize him for having diabetes. They don’t. They’re universally supportive and think he’s a pretty cool guy who draws a mighty fine Batman. It’s more that he’s constantly being silently reminded by his disease that he’s not like them, that he can’t live in the same unencumbered way.

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This kid makes diabetes look cool.

That sucks for anyone, but it sucks worse for a nine year old boy.

He was diagnosed in 2013. We slowly acclimated to the new reality of blood and math, of taking a day off school and a ferry and a two hour drive to see his endocrinologist every few months. Always knowing that because of where we live – a tiny island in a big ocean – that any mistakes, any emergencies, would mean Henry in a helicopter, airlifted to the big city hospital. But we didn’t make any mistakes. We didn’t have any emergencies. We learned, and we did our best. Time went by.

A friend of my wife’s called her in a panic. She knew a woman whose son Angus had just been diagnosed with type 1. They too were in a rural area, with no family history of the disease and no idea what to do. Their son was panicking every time a lancet or a needle came close to him.

Henry made him a little Instagram video. “Hi, Angus. My name is Henry.” He showed him how he tests his blood sugar, calmly and patiently. A drop of crimson blood welled up on his finger. “Now you do it.”

For Angus c/o @theruralroost part 1!

A video posted by Sara Jensen ❤️ (@sarabeejensen) on


Angus did it.

And then Buzzfeed wrote about it.

This was unexpected. We’d been using my wife’s Instagram as a way to share the videos, but we weren’t shooting for YouTube viral monetization of his childhood. We asked Henry if he was OK with other people seeing his videos.

He was.

They did. Other people started getting in touch, with newly diagnosed kids of their own. Henry made them videos. He demonstrated blood sugar checks. He told jokes. He did dances. And he told them that everything was going to be OK.

@tcorreira @best.k8 Hey Margot! #beyondtype1 #t1d

A video posted by Sara Jensen (@sarabeejensen) on

@tmareeharvey ❤️

A video posted by Sara Jensen ❤️ (@sarabeejensen) on

Henry made videos for kids in New York, in Canada, in California. And eventually we started working with a nonprofit (beyondtype1.org) that let him make videos for everyone in the world. Nick Jonas (formerly of the Jonas Brothers) is on the board. He has type 1 diabetes, one of the most high-profile diabetics in the world. Nick played a charity basketball game at the Barclays Center in New York earlier in the year.

Sweaty, exhausted, the only person Nick wanted to see after the game was Henry.

Henry’s video played on the Jumbotron during the game. It’s played on the NASDAQ billboard in Times Square. Kids all over the world know who Henry is (and want to know where he gets his clothes).

Last year Carter Clark came to visit. She’s a young type 1 diabetic who travels the world–she was fresh back to the states from Panama. She regaled Henry with stories of hacking through jungles, surmounting peaks surrounded by monkeys. He gets a postcard from her every few months, from Iceland or New Orleans or somewhere else far-flung.

He’s visited people in the wild Canadian mountains and on the shores of Montauk. Eaten at high-end restaurants where the chefs come out and talk about his meal. Been backstage at concerts and filmed, running in the sand, for television commercials.

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An internet star.

None of this would have happened without Henry’s type 1 diagnosis.

As I write this, Henry is on his way back from Vancouver. He just filmed a batch of little videos with Victor Garber from the CW’s Legends of Tomorrow, another type 1 diabetic. He plays the DC hero Firestorm (or at least half of him. It’s complicated. Wikipedia it). How cool is that for my boy to stand next to an actor who he’s seen as one of his superheroes on TV?

I’d do anything to take the burden of diabetes from my son. I pass out typing the word “needle” and close my eyes when I watch The Walking Dead but I’d gladly take his disease on myself. But seeing him like this, seeing him forming these connections with unlikely people all over the world, makes me think that maybe there’s something growing deeper inside him, pushing him outwards on his own terms.

I can’t wait to see where it takes him.

All photos by Sara Bee Jensen.

Q&As

The Blind Mountain Hiker Who Paints What He Feels

British landscape artist Keith Salmon didn't let the loss of sight disrupt his love of painting the outdoors.

Keith Salmon is a British landscape artist. A family move to Wales at the age of ten fostered a love of hill walking, which endured after diabetic retinopathy robbed him of his sight in his thirties. Since moving to Scotland in 1998, 56-year-old Keith has climbed more than one hundred Scottish mountains–known as Munros– and features the rugged vistas of his adopted home in his abstract landscapes.

Where did your love of mountains come from?

I was born in Essex, southeast England, but in 1969, when I was ten, my father got a job in Wales and we moved there as a family. My father had always been an outdoors man. We arrived in April and by the middle of the summer he’d started taking us out onto the beautiful low mid-Wales hills. My mum and sister quickly got fed up with spending their Saturday afternoons trudging across damp fly-ridden hills, but I caught the bug and it’s been with me ever since. We didn’t always get on too well, my dad and I, but he gave me a love of hills and wild places.

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You originally studied and worked in sculpture. How did your work change after your sight started to fail?

My sight failed very, very quickly in 1990. For about three months I did nothing, I couldn’t get my head around how I’d work as an artist if my sight was failing. Then I realized I needed to keep doing as much as possible. I decided to put the sculpture aside and concentrate on the visual side, drawing and painting, thinking that if I lost all my sight I could perhaps go back to sculpture, and work in a purely tactile way.

I spent the next eight years just trying different things out. During these years my sight was failing rapidly, so it was very much taking one step forward and one step back. I’d figure how to work with the sight I had and then it would get worse again so it was a phase of constant readapting.

By 1996 I had only a little sight in one eye but my condition had stabilized. When I moved to Scotland I was starting to get a bit more confident, I began painting with broad brushes and creating these small paintings based on man made structures: buildings, street scenes, very abstract. I was almost bludgeoning the painting, there was no finesse in it but the paintings were quite nice.

How did you adapt to walking the hills without your sight?

When my sight started to go I stopped walking, I thought it would be too dangerous. But then a few months later I thought no, I’ve got to go back to it. I bought a traditional walking stick and asked my partner if she’d guide me. We tried and found it was possible: slow, but I could get back into the hills relatively safely.

In 2001, I went on a summer mountain skills course for blind and visually impaired people at Glenmore Lodge, the UK’s leading outdoor centre. There were six other visually impaired people and each person had a sighted volunteer guide. The great bit for me was that this wasn’t an adventure holiday for blind people: this was a proper mountain skills course, adapted for the needs of people who are visually impaired.

Before the course I had felt very guilty about being in the mountains. I wondered what people would say if they found out the guy who used a white cane around town was throwing it aside every few weeks, donning walking boots and trudging across the mountains. I figured I’d get quite a slagging off. But here was the top mountain authority in the land saying “yeah it’s fine for you to walk in the mountains”. So I thought: I can do this, and no one’s going to mind, and the guilt disappeared.

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Have you encountered any resistance to the guy with the white cane walking in the hills?

There was one trip I organized with a couple of friends to do the South Glen Shiel ridge. It’s a twenty-four kilometer ridge walk taking in seven Munros. One of my mates invited his friend to join us, and when this guy found out I couldn’t see he was really put out about it. In the end he and two other mates climbed the ridge from one end, and Nita and I and another chap climbed it from another end. The chap who was concerned about me wouldn’t walk with us, because I think he was fairly certain that we would come a cropper. Which we didn’t.

Have you ever run into trouble in the mountains?

We’ve had a few interesting times. The Scottish mountains are dangerous. They’re not that big compared to other countries’ mountains, but they’re very wild and rugged. Scotland’s a northern country right on the side of the Atlantic so the weather changes so quickly. Changes in weather conditions is what catches most people out.

One December Nita and I walked out to a Munro, and we were returning along the same route. The weather caught us out and the cloud had come down; you couldn’t see that much, and we thought we’d just follow our footprints back.

We hadn’t realized but another walker had been on the hill and taken a different route, and we were following their footprints. We suddenly came to this big drop in thick cloud and realized what we’d done and how stupid we’d been. We had to stop and work out where we were and set a compass course back to where we needed to be. In December the light is very short and we knew we only had an hour of daylight left. For me that is dangerous as the little sight I have goes to almost total blindness in the dark.  Fortunately we had the skills and experience to work out where we were and got off the hill just as it was getting dark.

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Do you use any special equipment on the mountain?

For anyone who can’t see too well, walking poles are fabulous. Most people use them to steady themselves and to take the pressure off their knees. But to someone who’s visually impaired, these poles are like white canes with attitude. Not only are they doing everything most walkers use them for, but the pole can tell you the depth and condition of the ground in front of you. You get so much information from the feel and the sound of the poles touching the ground.

Your partner of 29 years, Nita, is also your guide. How has your guiding relationship grown?

Over the years Nita and I have walked together so much she knows what she needs to tell me. As soon as we get onto something difficult, I get right behind her so that when I’m looking down I can just see the heels of her boots with the little bit of sight I have. That way I know whether she’s moving to the right or the left, and I can hear her footsteps, so even before she tells me about a big step ahead I’ll have heard it.

If I go walking with someone else, that’s always more dangerous. However careful they think they are, it’s very difficult to understand how people see. One of the big questions I’m always asked is “what can you see”? When you speak to other visually impaired people most realise that everyone sees differently, so learning to work with a guide is a unique relationship.

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Your walking expeditions function as fieldwork for your paintings. How do you gather material?

I hold a binocular in my left hand and hold it up to my right eye, the eye that has a little sight. I balance my sketchbook and peer through the binocular and scribble almost blind, occasionally looking down to see what’s on the page. The purpose of this isn’t so much to end up with a beautiful drawing, it’s to force me to stop walking and try and take in the scene in front of me. I still take photos, but I use photos as a memory jogger, a starting point. The biggest amount that goes into the amount of my paintings is just the memories, the hours and hours we spend in these places.

My paintings are titled with a specific place in mind, they’re not that accurate, they’re not meant to be. I’m just trying to convey something of the spirit of the place and my experience of being there.

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What’s been your biggest mountaineering achievement?

In Scotland there are two hundred and eighty two Munros; peaks over three thousand feet. It´s become popular to try and walk all of them, and people who do this are known as Munro baggers.

When we started walking regularly after we moved to Scotland I suddenly realized I’d walked ten Munros. I knew I’d never climb all two hundred and eighty two, but I thought, maybe I could do twenty. After that I thought, let’s climb fifty. Then the logical thing was to reach one hundred. For about three years every walk was aimed at climbing another Munro, sometimes two or even three a day.

Eventually, in 2008 Nita and I stood on what was my hundredth Munro. It was a winter day, and we were on a mountain called Avaconich(?). It’s a big, high plateau of snow and ice with very steep sides and we stood there and looked. I remember I had a couple of tears in my eyes. It was a big day for me.

Since then I’ve become more sensible. We explore the smaller, less frequented mountains and hills and it’s great. Sometimes you can be out all day and not see a soul, yet you know that just two miles away there’s a big Munro and there’s going to be fifty climbers on it.

What are your thoughts on being known as a visually impaired painter?

I’m a professional artist who happens to be visually impaired as opposed to a visually impaired artist. For me that’s an important distinction. Being tagged with the label of a blind artist makes a difference in how people perceive my work and lot of people don’t see me as a professional painter, which I am. I don’t often blow my own trumpet but my work is pretty good these days. I’m certainly up there with the better landscape painters in Scotland. But when people see the label “blind artist” they often think, he can’t be a serious artist, and they don’t buy my work. In these so-called enlightened days you’d think that wouldn’t be the case, but sadly it is.

You can see more of Keith’s work at http://www.keithsalmon.org/.

Essays

Playing Ball With Low Blood Sugar

Balancing the passion of an athlete with the reality of Type 1 diabetes requires admitting a certain amount of weakness.

I was an athlete, and then diabetes made me weak.

I was diagnosed at 15, and though I continued to play sports for years afterwards, I never acknowledged this weakness. My coaches saw it, my family saw it, and eventually I saw it: for me, diabetes was bleeding sports of their joy. I didn’t admit it to myself at first—that I was weaker—and that was my mistake. If you admit the weakness you can deal with it. If you don’t, you declare a cold war on your own body.

There are some professional athletes with Type I Diabetes, people who drag the added weight of their disease behind them. NFL quarterback Jay Cutler and NBA draft bust Adam Morrison are among the most famous. Their success tells us that diabetes doesn’t erect an insurmountable barrier against the dream of becoming a pro athlete. Which is encouraging. You can still be almost anything as a diabetic (excluding pilot and truck driver). But that doesn’t mean it’s easy. Cutler and Morrison had to stare at their disadvantages without blinking, and then work harder than everyone else.

When I was 15, in my sophomore year of high school, I played three sports: football, basketball, and baseball, and I took great joy in them. Then I was diagnosed with Type 1 diabetes. After my diagnosis in the fall of that year, everything got harder. I had to guard against low bloodsugars, carrying ungainly bottles of glucose tablets with me everywhere: a slight dip in bloodsugar could knock me out of a game for half an hour. I had to defend myself from high bloodsugars, which sap energy and morale.

"Each time I trotted to the sidelines to monitor my diabetes, I severed another thread of connective tissue between me and the team."

“Each time I trotted to the sidelines to monitor my diabetes, I severed another thread of connective tissue between me and the team.”

Soon I quit football. The squalor and toil of practices made it difficult to find time to check my bloodsugar, and it was tough to keep my syringes out of the mud. If I became too low or too high to practice, I’d stand on the sidelines while my teammates whipped past. If this happened while the team was running suicides, my popularity on the team would understandably diminish. Each time I trotted to the sidelines to monitor my diabetes, I severed another thread of connective tissue between me and the team. I had no great love for football, however, and it was easy to quit.

I was unwilling to give up on basketball so easily. I loved it. But basketball is a tricky sport to play with diabetes. Its intense cardiovascular demands can torpedo a diabetic’s bloodsugar in a few minutes. This recovery time can cost the diabetic a great deal of playing time, especially with the game’s frenetic pace. So playing ball with diabetes was going to be tough.

[Basketball’s] intense cardiovascular demands can torpedo a diabetic’s bloodsugar in a few minutes.

My coaches knew this. Sort of. Before tryouts I told them about my diabetes, and they seemed to understand. But they were preparing to accommodate an athlete with a medical asterisk, and I could imagine how uncomfortable this made them. Soon it became clear that they didn’t know how to handle a diabetic on the court.

During a practice, we were running three-man-weave drills, and as I trotted back up the court to rejoin the line, I noticed my hands were shaking. I didn’t feel low, but sometimes the symptoms of hypoglycemia precede the feeling of dread. I held my hand up to my face to see how badly it was shaking, and the coaches saw this; immediately they were yelling.

“No, not good! Not what we want to see!”

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I held my hand up to my face to see how badly it was shaking… Immediately [the coaches] were yelling. “No, not good! Not what we want to see!”

The awkwardness and imprecision of their words suggested to me, as I left the drill, that they didn’t really know what they were mad at. They didn’t know what diabetes was, really. They just knew that whatever it was, it was bad.

They seemed a little scared, too. Diabetes must have seemed like a big liability. Maybe they knew about Adam Morrison, who had a diabetic seizure during a basketball game in 8th grade. They kept glaring at me with an inscrutable mixture of protectiveness and resentment.

Sitting against the wall, I checked my bloodsugar. My teammates stole glances at me and turned away with polite faux-neglect. I looked at my meter. I was not low. Angry with myself, I tried to rejoin the drill, but the coaches wouldn’t let me.

This episode suggested to me the breadth of the sacrifices diabetic athletes must make. Athletes like Jay Cutler and Adam Morrison don’t just leave the game when they feel ill, they have to leave the game when they feel any kind of weirdness. And even if there’s no weirdness, they still have to leave the game periodically just to make sure everything’s okay. That’s not something any other athlete has to deal with.

Changes in bloodsugar, much like the vicissitudes of a football or basketball game, can never be adequately predicted.

When you play sports with this disease, you must discover a balance between caution and recklessness: when to stay in the game, when to leave, when to trust yourself. The problem is that that balance doesn’t really exist. Changes in bloodsugar, much like the vicissitudes of a football or basketball game, can never be adequately predicted. Playing sports with diabetes isn’t an equation to solve; it’s an evil to be endured. Back when I still played sports, I didn’t know this.

The last time I played sports with Type I Diabetes, I was with a traveling baseball team, playing in a summer league as a pitcher.

When the season began, I was firmly in the starting rotation, usually pitching two or three innings every other game, and acquitting myself reasonably well. I garnered a few wins. The coach seemed to like me. At some point, which I don’t remember, I must have been checking my bloodsugar in the dugout with a meter on my lap. He asked me what I was doing, and I told him about being diabetic. He nodded, stared at the meter some, and walked away. I thought little of it.

After that revelation, though, I didn’t pitch another inning. He would promise me a start days in advance, but when the day came, he’d renege as I walked to the bullpen to warm up. For the rest of the summer, my jersey stayed innocent of dust. When he ran out of pitchers, he’d look right past me and put a shortstop on the mound. I never played competitive baseball again.

I was angry, but part of me understood the coach’s decision. Many of his players would only attend college via baseball scholarship, and the reputation of his program would depend on the quality of those college programs to which he sent his players. Each time he sent someone onto the field bearing his team’s jersey, he was investing his reputation in them. Any sign of weakness would signal to him that this player wouldn’t reward that investment.

So, he penalized any player who showed frailty. A first-baseman suffered heatstroke in practice and, after that, rode pine for the rest of the summer. Another kid cried after his pitching cost us a game, and the coach benched and berated him until he quit the team. The coach was running a business; he wouldn’t accept weakness in his workers. In his eyes, diabetes was unforgivable.

"Each time I trotted to the sidelines to monitor my diabetes, I severed another thread of connective tissue between me and the team."

“He penalized any player who showed frailty.”

And while my benching was disappointing, it drove home the idea that I was weaker through diabetes, and could not pretend otherwise. Diabetes was a liability to the team, and it was my job to deal with that, not the coach’s.

My brother Mason (also diabetic) runs marathons, and he also studies the biological consequences of living and exercising with diabetes. As a runner and a scientist, he knows very well that the disease puts him at several disadvantages. Not only does he have to carry a pack for his gear, adding extra weight, and check his bloodsugar regularly while running, his diabetic body is also inherently worse at handling the stresses of cardiovascular activity. His blood vessels (and mine) are too tense, and distribute blood to the necessary muscles poorly. Put another way, diabetics typically won’t achieve the same level of fitness as a non-diabetic, even with equivalent training.

Mason challenges these weaknesses head on, and sometimes it looks as though he stomps diabetes’ throat into the dust: he places highly in races and earns medals. But prior to any triumph, he must plan everything meticulously in order to merely participate: calculating precise meals, scanning his sugars with a continuous glucose monitor, and never giving himself an off-day.

Mason’s example, coupled with my own experience, has taught me that diabetic athletes must do two things. First, they must admit to themselves that they’re at a disadvantage. Second, once diabetic athletes accustom themselves to the idea of their own frailty, they must plan accordingly.

Sometimes it looks as though he stomps diabetes’ throat in the dust.

Both things are tricky, and I never mastered either of them. Diabetes deflates the illusions of endless youth and youthful invincibility, which happen to be the illusions of the confident athlete. It’s tough to preserve your on-field swagger when you know the body of your opponent functions more adequately than yours in measurable ways.

When I played sports in high school I possessed the garden-variety teenage arrogance that believed my talent would transcend limitations. Diabetes couldn’t stop me, I thought, but its indifferent poison crept through my limbs anyway. Now I know what I have to endure, and my admiration for diabetic athletes who didn’t quit has deepened. My own stubborn ignorance back in high school throws their gritty humility into sharp relief, and now when I watch them, I can enjoy the little triumphs nobody else knows about, and savor the astonishment of their damaged bodies chasing grace.

All illustrations by the author.