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Health & Fitness

Fighting Type 1 With Curiosity and a Pug

Amanda Oberski's insatiable curiosity about the limits of diabetes is what propelled her on a 4,200 mile bike ride across the U.S.

Amanda Oberski has a really cute pug named Apollo. He’s the kind of calm dog that reflects well on his owner, cuddling up to everyone who needs it. Amanda holds Apollo in her arms a lot, where he calmly sits observing the world from the comfort of her bosom. She lets him off the leash but he doesn’t stray far. He walks around, sniffing trees, bigger dogs, and dark spots on the sidewalk. He’s easy going and curious, just like his owner.

Apollo hasn’t seen Amanda for ten weeks. The 4,200 mile bike ride that Amanda just completed isn’t exactly the sort of thing you can take a pug on. But Apollo was waiting for her at the finish line.

When Amanda saw Beyond Type 1’s open call for cyclists with Type 1 diabetes to bike across the country, her immediate reaction was anger.  “I really thought there was no way someone with Type 1, let alone a team of people, could bike across the country.” She thought it was crazy and dangerous.

Then she had a change of heart. “I sat on those thoughts for a few days and let them swirl around inside of me,” she says. “If my initial reactions were fear and anger, and I think I’m a very adventurous and bold person, that was a big flag for me..  And I realized some were my own limiting thoughts and that if this was going to happen, if a team was going to do it, I needed to be part of that team.”

 

Amanda and her pug, Apollo. Photo: Whitney Freedman

There are a fair few mountains in between New York and San Francisco, the path that the Bike Beyond team took on their mission to raise awareness for Type 1 diabetes. With no cycling experience, Amanda was nervous about those mountains; she imagined accidentally losing control of her bike and plummeting off the side of one. So she started training, using San Francisco’s hills as proxy. (In the end, “biking up mountains is not that fun,” she says. “But biking down them is great–and yes, a little scary.”)

Amanda grew up far from any mountains in Sterling Heights, a suburb of Detroit. She was diagnosed with Type 1 when she was 15. Before she was diagnosed, she’d been sick for months, but being an active teenager–she danced three to four hours a day as a member of her high school dance team–had mostly hidden her telltale symptoms.

What finally gave it away was the peeing. Amanda got up one too many times in the middle of the night, and her mother got worried. They went to the doctor, but both Oberskis thought it was just a bladder infection. “I was there for like thirty seconds. I peed in a cup, they looked at it, and sent me to the hospital,” she remembers. Her blood sugar levels were dangerously high.

The diagnosis was a relief. “I’ve always been very realistic and very positive. I was just happy that we knew what it was, and that there were next steps to take care of it.” She was sick of the extreme sleepiness, hunger, and thirst that untreated Type 1 diabetes can cause… not to mention the constant calling of nature.

Amanda Oberski’s positivity and curiosity about Type 1 is what propelled her across the country.

Amanda embraced her diagnosis. Some things were difficult, like going out to eat when she wasn’t sure where the carbs were hiding in any given dish. Also, as a high school girl, she liked cute little bags, which is right out with Type 1, given the number of supplies you need to carry with you. For the most part though, Amanda dodged the Type 1 burnout which is common after diagnosis, once the relentless attention required to manage the diseases starts waring people out.

Her positivity has been an asset in managing her diabetes. “When you have Type 1,” she says, “You have to roll with the punches because you can plan your day a certain way and then it will totally go up in flames and you have to be able to say ‘Well, ok!’ and restrategize. Because it’s literally your life on the line.” She says that being curious about diabetes helps her with her adaptability. “I love to figure stuff out. My diabetes was actually interesting to me.”

These days, Amanda tries to instill her curiosity in others. After finishing a Teach for America program in Washington DC, she stayed with the organization working with schools in the district on bettering their science curricula. Four years ago, Amanda and Apollo moved to San Francisco together where Amanda began working to help build a K-12 Engineering and Design school called Bright Works.

“A lot of the way that K-12 is run suppresses curiosity,” she says. “We just give kids facts instead of them exploring on their own volition. But learning is not black and white. I think curiosity is the strongest and best ability that we have as humans and that is what we should be developing and propelling forward.”

Curiosity about the limits of her diabetes is what propelled her across the country on a 4,200 bike ride. So maybe Amanda’s got a point. Apollo certainly thinks so.

Health & Fitness

The Overachieving Teenage Pancreas

18-year-old Abby Pepper might be an overachiever, but thanks to Type 1 diabetes, she knows better than most how important it can be to ask for help.

Abigail Pepper, 18, is still working out what she wants to do with her life. But whatever she choses, it’s clear she’ll do a lot. In fact, she already has.

She just started college at Appalachian State University as a junior, having already put two years of community college under her belt. There, she’s pursuing a master’s in political science. “With all of today’s political insanity, I’d like to be able to contribute instead of just saying ‘oh this is terrible!’ For example, there’s a lot of horrible healthcare legislation for people that depend on insulin. I don’t know exactly what I will do, but I think there’s space for me to help there.”

Having Type 1 diabetes herself, having access to insulin is an issue close to Abby’s heart. A volunteer with the Juvenile Diabetes Research Fund in her hometown of Charlotte, North Carolina, Abby helped organize a gala that raised over a million dollars.

But her greatest personal achievement might just be successfully completing Bike Beyond, a 4,200-mile bike ride from New York to San Francisco. She was so proud of the accomplishment, Abby and her mom Cheryl, who homeschooled her while working night shifts as a critical care nurse, got matching tattoos after the ride. It’s a design of a mountain above crossing arrows with stars in the sky that map all of the stops they took along along the way. They were raising money and awareness for Type 1 Diabetes with nineteen teammates, through an organization called Beyond Type 1.

Photo: Whitney Freedman

At 17, when the ride started, Abby was the youngest rider, so her mom accompanied her. A cycling enthusiast herself, Cheryl has been Abby’s companion on her journey with diabetes since the beginning.

It started with the Turkey Trot, a five mile Thanksgiving morning run that Abby’s family participates in every year. When she was 13, quite suddenly, Abby threw up in the middle of the run. She remembers thinking, “Oh my gosh, I’m so cool! I ran so hard I threw up! I’m a real athlete!” But in reality, she was dying; at her blood sugar level, she could have gone into a coma from exercising.

Abby had been displaying symptoms of Type 1 diabetes for years, but as is all too common, doctors kept misdiagnosing it as a flu. After the Turkey Trot incident, Cheryl who had correctly suspected Type 1, refused to leave the doctor’s office until they tested Abby’s blood sugar. When they tested it, “the nurse’s eyes popped out of her head and she went running out the door.”

Abby was rushed to the hospital, but the reality of her diagnosis didn’t hit her immediately. “I just didn’t realize how insane diabetes is at first,” she says. But after six months, the full time job of keeping track of her blood sugar and insulin levels, the permanence of her condition started to sink in: “It was exhausting,” she remembers.  “I was trying to be a pancreas, while I was still learning how to be a human.” She sank into a depression: “My mom says I changed. She says my face stopped lighting up.”

“I was trying to be a pancreas, while I was still learning how to be a human.”

Cheryl finally decided to take Abby to a conference for women with Type 1. “I thought it sounded terrible!” Abby remembers laughing, “A diabetes conference? Who wants to go to that?” But the experience ended up cheering her up substantially. She made friends there who she still sees and talks to regularly. Making friends that knew first-hand what she was going through was “life-changing.”

Photo: Whitney Freedman

But it wasn’t quite enough. Abby still struggled with depression. She took up running which  helped but “there’s no break from diabetes,” she says. “I can go on vacation, but I’m still going to be watching my blood sugars go up and down all the time and trying to keep them at a certain level which is a lot of pressure and can sometimes be impossible.” So competitive that she sweats during board games, Abby didn’t like she couldn’t always win with diabetes.

Last year, unable to beat her depression herself, she finally asked her mom to take her to a therapist. Now, Abby’s an ask-for-help crusader: “I’m so passionate about how OK it is to be sad and have weaknesses and about how important it is to ask for help!”

In other words, acknowledging your human weaknesses makes you stronger than denying them. That’s a message Abby and the 20 other Bike Beyond riders exemplify in the flesh. “Type 1s are pretty strong-willed and self-confident because we always have to advocate for ourselves,” she says. “Type 1s have a don’t-give-up attitude because we already live with something that you can’t give up on.”

Health & Fitness

Half a Beard, a Fake Moustache, and 4,200 Miles Biking with Type 1

Jesse Lavine always wanted to forget his diabetes. Now, for a good cause, he does everything possible to draw attention to it.

When he crosses the finish line after a two-month, 4,200-mile bike ride across America, Jesse Lavine collapses into the arms of his family and friends. Sobbing and laughing, it’s hard to tell where the one begins and the other ends.

As part of Beyond Type 1’s Bike Beyond, a cross-country ride from New York to San Francisco to raise awareness about Type 1 Diabetes, Jesse and his teammates have just completed a ride some never thought they could make.

Jesse’s got the personality of everyone’s favorite camp counselor. He’s sweet, appropriate, and warm, but there’s something mischievous about his smile, like he’s about to play a prank on you. A goofball, he was literally donning a fake felt moustache when I caught up with him in San Francisco.

Jesse Lavine has biked from New York to San Francisco to raise awareness of type 1 diabetes. Photo: Whitney Freedman

Even with such a silly accessory, it was hard not to be impressed by Jesse: the 22-year-old has no nothing to hide, no shame, not a trace of social anxiety or reservation. He knows it’s a power he can use to help keep others buoyant, and he does: at one part during the ride, when his teammates’ spirits were at the lowest, he shaved off half his beard and kept it that way for days, just to keep his friends laughing.

It took a while, though, for Jesse to be emotionally ready to take this trip. For years, he wanted to have as little with diabetes and Type 1 diabetes community as possible… let alone raise awareness of the condition.

The Reluctant Diabetic

Diagnosed with type 1 at age 11, Jesse says he’s always wanted to have as normal a life as [he] could.” He went to a diabetes summer camp the year he was diagnosed, but immediately hated it. Part of that was because of his expectations on what summer camp should be like. At his particular diabetes camp, there were no pine cabins and no outdoor showers. It was “kind of resort-y,” Jesse says. “I had been to other camps before that and knew what it was like and I wanted to rough it.”

His experience at diabetes camp made Jesse not one to be involved with other Type 1s. “I wanted to feel normal by doing the things that my friends without diabetes were doing.” So Jesse did as much as possible to push his diabetes to the background of his life. That’s how Jesse lived for the next nine years. “ I just wanted my diabetes to play as small a role in my life as possible.”

I just wanted my diabetes to play as small a role in my life as possible.”

As he would learn, ignoring your diabetes is easier said than done. During an 11 mile hike through the Big Sur mountains his first year of college, he fell into a toxic state of ketoacidosis. In other words, his body had too much glucose, but since his cells have no way to access it as fuel, they start feeding off fat. He made it out alive, but it shook him up.

Still, Jesse continued shunning other Type 1s, and pushing his condition to the background of his life, until his sophomore year at college. Attending Los Angeles’ Pitzer College, Jesse was unhappy. “My body didn’t feel good. I was scared to eat a lot of food because I didn’t know what it would do to my blood sugar,” he remembers. Depressed and socially isolated, he walked into the registrar one day and withdrew himself mid-semester for a medical leave of absence.

When he got home, he got a new endocrinologist who got him on a continuous glucose monitoring system so that he could track his blood sugar all of the time and understand what the instant effect insulin had on his body. He enrolled in a class at Boston University and stayed with family friends he refers to as “two awesome rabbis with five kids in a giant pink house.”

Jesse at the finish line of Bike Beyond. Photo: Whitney Freedman

Embracing Type 1

It was during this period that he also met Steve Richert, the director of Project 365, in which Richert climbed rocks every day for a year to prove that you can do anything with Type 1 diabetes. Meeting Richert was revelatory to Jesse. Before, he’d viewed his diabetes as weakness, but Richert made Jesse realize that he could, instead, “optimize diabetes” to live life to its fullest.

Soon, Jesse was interning at  T1D Exchange, which runs an online community for people with Type 1 called Glu. It was while there that Jesse finally made his peace with having Type 1. “It was the first time since that camp that I worked with other people with type 1,” he says. “They get what you’re going through and also you get to see that people have a lot of different ways of going about it.”

Living with type 1 diabetes for nine years, Jesse realized he had the expertise to help people. Although he’d struggled embracing his own experience, Jesse started outreach work at some diabetes summer camps. Except now, he saw the situation more clearly than he had as an 11-year-old.

“It’s going to be ok! Look at me, I’m ok!”

“Other families were going through what my family went through,” Jesse says. “The fear and the worry that the kids wouldn’t amount to anything. It was so gratifying to get to say, ‘hey! It’s going to be ok! Look at me, I’m ok!’”

Returning to Pitzer, Jesse came out of his summer with a new passion to learn. He changed his major to human biology. He wanted to learn the science of the condition that he’d had for the last 10 years. “I already knew the feelings of it,” he says. “But to sit at the table with scientists and people that can actually change these things… it was awesome!”

Actually, he said “it was awesome!” three times. You know someone is excited about something when they pull a verbal hat trick.

It took ten years for Jesse to accept his diabetes, but now, he inspires everyone around him that you can do anything with type 1. Photo: Whitney Freedman

Jesse The Catalyst

“Jesse is a catalyst,” says his friend Will Deheeger. “Wherever he goes he’s always getting things started and connecting people in the right ways to make productive things happen.”

That’s just what he did back at school. Through connections he made while in Boston, Jesse brought the College Diabetes Network to the Claremont Colleges, a consortium made up of 5 undergraduate colleges and 2 graduate schools. He also started writing content for Beyond Type 1, where he learned for the first time about their cross-country ride to raise awareness for diabetes, Bike Beyond.

Initially, Jesse didn’t know if he could complete the ride: unrelated to diabetes, sciatica pains had kept him in agony through much of his first semester of senior year. After an operation for a herniated disc, though, Jesse knew he had to try.

“I healed for two months then I worked my ass off to train and get ready for this ride.” He was also simultaneously working on his senior thesis, and performing research for Dexcom, the company that makes the meter he wears to track his blood sugar.

“Yeah,” he laughs. “That last semester was really hard.”

It’s true. You can do anything with type 1.

That’s an understatement. Not many people can bike 4,200 miles. Let alone with diabetes. Let alone just months after recovering from surgery. And that’s not even to mention his half-beard. But like his role model, Steve Richert, Jesse’s trying to prove a point.

With the Bike Beyond ride behind him, Jesse shows no signs of slowing down. Case in point: he’s currently putting together a diabetes app for kids. Similar to a Tamagotchi, Jesse’s app treats diabetes like a pet, which you have to feed and take care of, lest its blood sugar get too high or low. Jesse hopes the app will teach kids to get a grip on the mental math involved in constantly considering food, exercise, and insulin.

How does he have time to do all this? Jesse coyly admits he spent a lot of time working on his pitch deck for the app during his bike ride.

It’s true. You can do anything with type 1.

Health & Fitness

Fighting Diabetes, One Water Bottle At A Time

When Rufus Dorsey found out he had diabetes, he didn't hide from it. He made it his life's work.

It’s a beautiful sunny day in Los Angeles, and a group of ten men and women are gathered in a park learning how to work fitness into their lives to better manage their diabetes.

Standing in front of the group is Rufus Dorsey, an actor and personal trainer who knows all too well the challenges of keeping blood sugar levels under control. When Dorsey was diagnosed with diabetes at the age 17, he thought his life was over. He remembers wishing that he had a role model, someone who could help him understand what it meant to have diabetes and still be active. Today, he’s become that role model.

A top athlete from Philadelphia who excelled in football, baseball and basketball, Dorsey was preparing to leave for college on scholarship when he began feeling ill. Plagued by excessive thirst, a voracious appetite, and extreme fatigue, Dorsey ignored his symptoms, until it became impossible to do so.

Rufus Dorsey.

“I was invited to a party with friends and as soon as I got there I fell asleep on the couch,” Dorsey says. “When I mentioned this to my mom, she insisted on taking me to the doctor that same day.”

Dorsey was shocked when he was diagnosed with type 1, or insulin-dependent, diabetes, a chronic condition in which the pancreas produces little or no insulin. Although being a teenager and preparing to leave home was hard enough, Dorsey suddenly found himself tasked with learning how to keep his blood sugar under control, and wondering how it would impact his future.

“I went from being the happiest person in the world to being extremely depressed,” Dorsey says. “My mom, Elsie, refused to let me give up. She was a single parent, who had battled drug addiction, and with her love and encouragement, I slowly began to realize that having diabetes wasn’t a death sentence.”

“My mom, Elsie, refused to let me give up… with her love and encouragement, I slowly began to realize that having diabetes wasn’t a death sentence.”

Still, Dorsey wondered if he would be able to balance his blood sugar while participating in sports. He knew of no other professional or college athletes at the time who had diabetes, and he wondered if continuing was even a realistic goal.

“There was a day when my blood sugar levels dropped and I passed out at football practice,” Dorsey remembers. But he perssisted. “My mom told me I should become the role model I wished I could have. I started reading everything I could about diabetes, because I wanted to have a plan and learn how to keep my blood sugar under control, rather than have it control my life.”

Dorsey took his mom’s advice to heart and learned how to live well with diabetes. With his mom’s encouragement, Dorsey went on to play college football and graduate from Sonoma State University with a bachelor’s degree in Criminal Justice. After graduation, he moved to Los Angeles to pursue an acting career, eventually landing roles in Pearl Harbor, Rise of the Planet of the Apes, Dukes of Hazard II, the L Word, and more.

When he wasn’t acting, Dorsey began working as a personal trainer and group fitness instructor. Through his work, he met many others who had been diagnosed with diabetes or pre-diabetes and were struggling to keep their blood sugar levels in check.

“I became motivated to help other diabetics and to show them having a chronic disease doesn’t mean you can’t live a full life,” says Dorsey who invented the D-FORCE for Life program and water bottle workout as a plan to help people with diabetes thrive. The program emphasizes healthy diet and exercise with the one type of weights everyone is guaranteed to have on hand: a bottle of water.

“I wanted to get people to deal head-on with this disease and not just assume that health complications from diabetes are inevitable,” Dorsey says. “We all hear scary things about the consequences of this illness, but it’s poorly-controlled diabetes that can lead to serious health problems such as nerve and kidney damage and heart problems.”

Dorsey says the five components of his D-FORCE program include:

  • Facing your diabetes. You can live a long healthy life with diabetes.
  • Own your health. Don’t let diabetes own you.
  • Remember to check your blood sugar daily.
  • Change the way you eat – choose five or six small healthy meals throughout the day.
  • Exercise at least 30 minutes a day, three times a week.

Dorsey also reaches out to kids to teach them about fighting type 2 diabetes.

In addition to helping adults, Dorsey is also trying to fight the rise of type 2 diabetes among kids, where the once rare condition now accounts for as much as 45% of all newly diagnosed diabetes cases.To address what he calls the “diabetes epidemic,” Dorsey visits schools and community groups, and advocates for a balanced diet and regular exercise. “You wouldn’t put cheap gas into an expensive car, so why eat junk food?” he asks.

Not that Dorsey himself is a perfect role model. Like the rest of us, he craves the occasional slice of pizza, or scoop of ice cream, and when he does, he doesn’t deprive himself. But the trick is getting back on the horse: everything in moderation.“When I get off track, I get back on the next day,” Dorsey says.

As Dorsey finishes demonstrating the D-Force workout to the group gathered in the park, he admits that at 45, he’s in the best shape of his life.

“I encourage people who have diabetes or at risk of diabetes to just take that first step,” he says. “Maybe that’s going for a walk integrating healthy foods into their diet or losing weight. If I can change my life and achieve optimal health, I know that others can too.”

Profiles

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.”