The Diabetes Cyborg Hacking Her Own Pancreas

Dana Lewis invented the Open Artificial Pancreas System to make things easier for herself, and millions of others type 1 diabetics around the world.

In one specific way, Dana Lewis is a cyborg. To cope with her Type 1 diabetes, the health researcher wears what she calls an Artificial Pancreas System, or APS, a sort of DIY external organ. Clipped to her hip, it consists of an insulin pump reverse-engineered so as to be able to communicate wirelessly with a small computer and radio stick. Every five minutes, the computer monitors her glucose levels then adjusts the pump accordingly, automating what has always been a human labor. Blood sugar levels can be affected by everything from stress to diet to jet-lag but the APS takes all of this into account with the sober calculating of, well, a computer. For diabetes sufferers, the device is a godsend. Lewis is its inventor.

Today, Lewis is the leader of what she calls the open source APS movement. Hundreds of people, she says, build and use an APS across the globe. Every year she counts more and much of the growth can be attributed to her evangelizing. Extremely active on social media–“a prolific Tweeter”–Lewis is constantly singing the praises of her APS experience. Her Twitter account is chock full of pictures and anecdotes; Lewis meeting up with other APS users; Lewis getting through airport security scot-free with her APS attached (“#havepancreaswilltravel”).

Lewis is, undoubtedly, totally committed to the DIY cause. With a grant from the Robert Wood Johnson Foundation, she works from her home in Seattle communicating with other APS users, all of them trying to figure out how to perfect and proliferate the device. There are around 1.25 million Americans affected by Type 1 diabetes but Lewis has nothing less than the world’s whole population of sufferers in her sights. With such a bold vision, we reached out to hear more about her plans.

Dana Lewis standing in a field of tulips.

First off, why is the APS such a game changer?

In type 1 diabetes, what a person has to do is constantly be aware of not only their blood sugar but a lot of other factors about what they’re eating and the timing of their insulin [intake]. It’s a lot to keep track of. You have to do it 24/7, 365 days a year for the rest of your life after you’re diagnosed. What’s great about the artificial pancreas system is instead of having a human be burdened with staying on top of every single number and projection–that’s what a computer is perfect for. It can do the math every five minutes. It doesn’t get tired or emotional or worn out. It’s able to crunch the numbers and do the decision making automatically, no matter what the human is doing. It removes a lot of the cognitive burden and often achieves better outcomes than what people can do by themselves.

What is looping?

Looping is what we use to describe the act of using the system. It’s technically known as a hybrid closed loop but we call it an artificial pancreas. Looping is the act of closing the loop between the pump and the CGM.

How did your own experience with diabetes lead to this innovation?

I’ve had type 1 diabetes since my freshman year of high school, almost 15 years now. The APS actually started with one particular problem that I wanted to solve around making my continuous glucose monitor (CGM) louder. That’s the device that measures your blood sugar every five minutes. It’s supposed to alarm you when your blood sugar is too high or too low. But I would sleep through the alarm. It’s actually very dangerous. My frustration was around wanting to get the data off of that particular alarm in order to make a louder alarm using my phone. Once we were able to achieve that, we were able to build algorithms that led us into building the artificial pancreas. It’s funny because that wasn’t the original goal of the project. The goal was to wake me up. But now I have a device that lets me sleep and automatically takes care of everything for me.

A look at an artificial pancreas system.

Who is ‘we’?

This is an open source community project with a lot of people. Primarily it was myself and my now husband, Scott, who was my co-design and development partner throughout this entire project. When we first met in 2013 his first question about my insulin pump was, ‘Why doesn’t it talk to your CGM?’ I said, ‘They’re different manufacturers–of course they won’t talk to each other.’ But it wasn’t until six months later that we found somebody through Twitter who had solved the problem of getting data off of CGM that then allowed Scott and I to build all of these subsequent systems. Social media really brings people with ideas together to be able to collaborate on tools like this. This might not have happened had we not had social media to connect people. We did our first louder alarm system in 2013. A year later, December 2014, we had closed the loop and built the artificial pancreas. Today, over 500 people worldwide use an APS.

Why do you consider this a movement?

It’s definitely a movement. We use the hashtag #WeAreNotWaiting. People say, ‘Why do you do this?’ It’s the fact that we are going to wait years for a commercial solution that may or may not fit our needs. Why wait when we have off the shelf consumer grade hardware that actually allows us to do this?

Are there commercials products available now?

I’m not satisfied with stopping just because there’s one thing available for a few people in one country. That’s not good enough.

There is one commercial solution that’s now available in the US. It’s very very expensive. But it’s important to realize that this is a global issue. So I’m not satisfied with stopping just because there’s one thing available for a few people in one country. That’s not good enough. We really need technology that’s available in every country. There’s a big role for the diabetes community to play in terms of educating people. If you can’t afford or access a commercial option because you can’t get insurance approval or it’s not available in your country that doesn’t mean that you have to suffer in the meantime. You do have a choice to go and try something DIY.

How are you spreading the word about this?

We have a website that links to the open source codenames and documentation. People also share frequently across social media. They blog, tweet, give talks, post videos, talk about it on Facebook. It’s really word of mouth that connects the community with one another. That’s important because it’s DIY. People have to build it themselves. There’s nobody to give them the thing because we’re not a company. We can’t do that legally. People often run into questions when they’re building it. But that’s the great thing of having a whole community because you have dozens if not hundreds of people who can help answer questions about what’s happened–if this happens on this type of computer or I have a question on how the algorithm works. So it’s a really 100% open-source effort in terms of not just the code but also the kind of help people give.

Just because an artificial pancreas is homemade doesn’t mean it can’t come with cute accessories.

Is an APS difficult to make?

There’s a perception that it is. But we actually have dozens of people who come in with no technical experience and they’re able to get it up and running in about an hour. It’s not impossible but the big barrier is people being willing to try. What’s surprisingly funny is there’s some people who come in with a lot of technical expertise and they start getting bogged down in the weeds and try to fine tune it after building it, without building it successfully first. So they’re slower to build the system than people with no technical background.

The big barrier is people being willing to try.

Once people get them going, how does the APS impact people’s lives?

For me it’s peace of mind. Others, like parents, who have a constant worry about their children and wake up several times a night to take care of their children talk about how great it is being able to sleep again. For other people it’s about having to do less work for diabetes. The amount of work it takes is so much less with this technology. Also the blood sugar itself. It’s easier to reach your goal of blood sugar and stay there with an APS.

What are you working on right now?

We are continuing to evolve both the algorithm and the hardware that we’re using. I’ve been looping now for over three years. The hardware has changed. Our biggest challenge is time. It’s a 100% volunteer project. When something comes up it’s based on us carving out the time to do it and being self-motivated. No one’s paying us. We do get a surprising amount done but more hands makes for lighter work. It’s always nice to have more volunteers join the community.

What are the demographics of the community?

We have people all over the world. Brazil, UK, Spain, Russia, Bulgaria, China, Australia. People on five continents looping. The language barrier might be bigger than the technical barrier. But Google Translate has made a big difference.

What are your long term goals?

One of the challenges right now in the US is there’s only one kind of pump which is loopable. These are old pumps which have technically been recalled because of a quote unquote security flaw. Somebody found the ability to remote-control it. The FDA told the company to recall it. But that same kind of flaw is what actually allowed them to remotely communicate with our computers, which is actually ideal. So those of us who are looping have decided that the benefits of looping outweigh the minimal risks of somebody trying to do something malicious.

These pumps are not brand new. You can’t buy them in warranty. You run the risk of your pump breaking and having to buy another one on a secondhand market. There are other pumps available from manufacturers elsewhere around the world that have bluetooth built in, modern pumps without security flaws. We’re working with pump manufacturers to have them bring a modern pump to market in the US and elsewhere around the world where we don’t have to rely on the security flaw and can actually use an in-warranty modern pump. We’re trying to facilitate the use of open protocols, so instead of having to hack the communication and do a lot of reverse engineering work we’d much rather have a clearly documented communication protocol that the user can safely and securely use. A big push of our community’s work is pushing those companies to bring these to market.  We shouldn’t have to reverse engineer medical devices.


Full-Time Mom, Part-Time Pancreas

Being a caregiver to two kids with Type 1 Diabetes requires a lot of love, math, and sleepless nights. But Julie Seabury says it's all worth it.

It’s Caregiver Week on Folks! This week, we’ll be telling stories about the people who provide physical and emotional care for the people they love most. Learn what PillPack can do to help caregivers here.

“Learning how to care for a diabetic is like a part time job,” says Julie Seabury. Except it’s one that starts at dawn.

Everyday, Julie starts the day on alert. As soon as they wake up, her daughter Maddy, 10, and son Jake, 14, check their blood levels and tell her the results. “I want to know what we’re starting at,” Julie explains, equating it with a quick glance at the fuel gauge before you rev up the car.

Julie Seabury

Then comes the math. The kids make their own lunches, writing the estimated carb count for every item they pack. Their breakfast depends on their blood count, but never includes carbohydrates, which might cause their levels to spike. But eggs and bacon are usually on the menu, as well as carefully measured glasses of juice, if their morning blood sugar levels are low.

Next, the drive to school. Maddy and Jake’s teachers are prepped on what to do ‘in case of an emergency’, but Julie still needs to double check that the administration knows the signs of high and low blood sugar, and that the nurses have backup meds on hand in case of emergency. Once she’s confident the kids can get through the day, she drives off to her full-time job, also as a teacher at a nearby school, but even then, she’s always got one eye on an app that connects to Maddy and Jake’s blood monitoring systems so she can check on them throughout the day.

Night is the scariest time.

When you have type 1 diabetes, there’s a phenomenon called “Dead in Bed” syndrome, in which low-blood sugar can result in a person with diabetes slipping into a coma and dying. Julie’s nights are filled with surges of fear that, if she doesn’t check on them regularly, either Maddy or Jake will succumb to the syndrome.

So every night, Julie sets two alarms: one at 1am, then another at 4am. When they go off, she slips into her children’s rooms as quietly as she can, to check their blood levels. Sometimes, when she checks, her kids’ glucose levels will be off the charts, seemingly for no reason. Then, she and her husband are up six or more times per night, bringing her children juice and making sure they’re okay.

The Seabury Kids. Maddy, front, and Jake, right, both have Type 1 Diabetes.

Before June 2014, Julie couldn’t even imagine having to worry about such things. That was the month that Julie’s youngest daughter was diagnosed with Type 1 Diabetes.

“There really is a learning curve [to managing Type 1]…      It’s not a simple math.”

Maddy, then 7 years old, had recently begun losing weight. Normally bright and energetic, she became lethargic and sickly. Already managing celiac, Maddy was more susceptible to other autoimmune diseases, so Julie and her husband took their youngest daughter to the hospital. What followed was a whirlwind 24 hours in intensive care, followed by a three-day crash course in which Julie–a total stranger to the world of diabetes–had to learn all of the (seeming) calculus needed to keep her T1D daughter healthy.

“There really is a learning curve,” Julie remembers. “It’s not a simple math.” Luckily, Maddy was diagnosed in summer, months Julie has off from work. During this time, she perfected her technique: checking blood glucose levels with a finger prick, injecting insulin, and counting carbs to keep Maddy stable.

It was good she had the practice. Six months later, her oldest child, Jake, was also diagnosed. This time, she knew just what to do, but while it was easier in some ways, “it was also harder, because I knew what [type 1] meant,” says Julie. “I knew what it meant for our family.”

A glimpse inside Maddy’s bag reveals lots of diabetes supplies.

Three years later, Julie and her family have adjusted to the drastic lifestyle change that comes with having two of their three children diagnosed with T1D. Now, Maddy and Jake are “pretty darn independent. “ They test their own blood, count their own carbs, change their infusion sets for their insulin pumps and know their bodies well enough to be aware of their needs when they are exercising, eating lunch, or having highs and lows in their blood glucose levels.

With all these struggles, parents that have children with T1D need support. That’s why a significant portion of Julie’s spare time is devoted to reading messages from other Type 1 parents online, through blogs or Facebook groups. Julie doesn’t often post herself, but “just seeing other people putting themselves out there” helps her, she says. “I can read that and know that I’m not alone – other people are out there crying their eyes out too.”

One day, Julie posted on her own Facebook page: “Today, being a pancreas is kicking my butt.” Both Maddy and Jake’s CGM devices broke, expensive pieces of equipment which provide Julie with important mobile alerts about their blood sugar levels. The bad luck highlighted another underemphasized fact about being a caregiver for someone with Type 1 Diabetes: the constant expense. All of this equipment costs money, and even with insurance, it puts sizable financial stress on the family.

“It’s just constant. If I really think about the fact that we will never get a break from this, it becomes disheartening. It’s always there.” The challenge of the Type 1 parent is achieving balance between the constant worries and responsibilities of keeping a child healthy, and not letting Type 1 get in the way of a life well-lived, for everyone affected by it.

The challenge of the Type 1 parent is achieving balance… and not letting Type 1 get in the way of a life well-lived.

Through all this, Julie takes strength from her children.

Last year, for a project interpreting Martin Luther King Jr’s ‘I Have A Dream’ speech, Maddy focused on her dream for a cure of diabetes. “She researched how many people are affected by diabetes, and taught her class about it” Julie remembers. “She explained how finding a cure would change things for her when she is playing sports, or having a sleepover at a friend’s house.”

That’s a dream Julie, too, shares. She can only imagine how her life would change if a cure to Type 1 Diabetes is found: the money it would save, the gray hairs it would prevent, the nightmares it would stave away. But that’s not to say Julie Seabury resents being a human pancreas. Far from it: there’s just nothing she wouldn’t do for her kids.

Health & Fitness

Fighting Cystic Fibrosis With A Rumble And A Roar

When his condition was at its worst, Paul Underhill designed his own nourishment drink to prevent himself from starving. Now, he sells his drink across Canada to help others.

It’s Good Friday 2011, and Paul Underhill, 41, is being wheeled into surgery at Toronto General Hospital. Instead of being fearful—a typical response to a double lung transplant—Underhill is cheerful. He’s singing.

“I’m on my way, I don’t know where I’m going, I’m on my way!”

Smiling from behind his rectangular, black-rimmed glasses, he sings me the Paul Simon refrain he performed for his nurses six years ago. Sandra Underhill, his wife of 19 years, joins in the singing, but she wasn’t sure what to make of her husband’s playfulness pre-transplant. She was still in shock from it all—numb from months of cleaning blood her husband coughed up, sometimes a cup at a time, and traumatized by all the ambulance rides, not knowing whether he would survive the wait for new lungs.

Born in Victoria, British Columbia, Canada, Paul Underhill was diagnosed at six months of age with cystic fibrosis (CF), a genetic disease that affects the digestive system and the lungs. In the 1960s, a CF patient was lucky to survive to age 10. Today, many still succumb before their 30th birthdays—fluid fills the lungs and hardens, gradually shrinking lung capacity until there is none at all.

Most people with Underhill’s type of CF don’t live to adulthood. The lungs that saved him arrived in the nick of time, the blessed news delivered by a nurse named Grace while Sandra’s father prayed for a miracle at the church across the road from the hospital.

It takes a special kind of person to face a seven-hour transplant surgery with a smile and a song. That’s Underhill—fearless, and a fighter.

It takes a special kind of person to face a seven-hour transplant surgery with a smile and a song.

“The question that is inside of me is ‘why not?’” he says. “What I’ve learned about myself is that I’m powered by possibility and passion for things that I love… I don’t let fear interfere with what could be.”

Growing up, Underhill performed his lung-clearing exercises twice a day, then participated in his favorite activities—running, soccer, and cycling. At age 15, he competed in the British Columbia Summer Games for cycling. At the University of Victoria, he met his wife and graduated with a bachelor of arts and a bachelor of laws.

“Paul always had a cough, ever since I’ve known him,” Sandra says, referring to the characteristic feature of a person with CF. “When you find a partner and you fall in love, you don’t think about things getting worse. I never thought about [cystic fibrosis being fatal].”

By his early 30s, Underhill’s health was deteriorating rapidly. He was forced to leave a job he loved with the provincial government, but he stayed active, even kite surfing as long as he could. (He maintains it’s the best lung-clearing exercise around.)

Paul Underhill designed his own drink, Rumble, to gain weight back after cystic fibrosis began shutting down his lungs.

To fill the void, he devoted himself to a new passion: keeping himself well nourished, which would aid his recovery come transplant day.

“I realized I couldn’t rely on my doctors, no matter how great they were, to keep apprised of the latest research,” he says. “You have to look at what the science is right now.”

Underhill poured through medical journals, researching new treatments for CF and lung health. Sandra helped, too, studying nutrition and the link between diet and disease.

“It’s not in Paul’s personality to sit back and wait for things to unfold,” Sandra says. “When he wants something, he goes full steam ahead—and he wanted to stay as healthy as possible.”

Combining their research, husband and wife noted a high correlation between inflammation and many degenerative conditions. Add to that evidence that CF patients with good nutrition have better lung function, and Underhill set out to concoct a nutritious super shake that his body could thrive on.

“I was looking for a beverage of the highest quality that was easy to digest. I looked everywhere and couldn’t find (what I needed),” says Underhill, who is diabetic in addition to having difficulty absorbing nutrients, because of his CF.

The recipe for what would eventually become the drink Rumble took six months to develop in the Underhills’ kitchen. The shake had to be gluten-, lactose-, and soy-free, low in sugar, and free of genetically modified organisms.

“Most important of all, it had to taste great. That’s what took so long in the kitchen, perfecting the taste,” says Underhill.

Rumble—named for the sound the body makes to declare its need for nourishment—comes in three flavours, Dutch cocoa, vanilla maple, and coffee bean, all naturally sweetened with organic maple syrup, organic agave nectar, and vanilla bean. Using organic oils as its base, the drink is light and fluid, not chalky, and has no aftertaste.

Once Underhill was satisfied with the shake, he realized he had a product he could bring to market. In 2008, he launched Rumble with three partners.

Throughout the process of creating the business, Underhill’s CF worsened. At one point, he needed two oxygen tanks to breathe. He couldn’t even brush his teeth without help. As he waited for a life-saving double-lung transplant, he relied on his shake for nutrients to keep his body as healthy as possible.

“The biggest risk pre-transplant is that you get so skinny you’re not going to do well afterward,” he says, noting that three years post-transplant, he was “two pounds heavier than the day I got transplanted, because Sandra made my shake, the essence of Rumble, every day.”

Underhill was living proof the drink lived up to its promise to be a nutritious, protein-rich super shake.

Rumble’s biggest challenge was finding a production partner who could work with its delicate ingredients like organic flax oil, which is rich in omega-3s and believed to reduce inflammation. The team persevered, determined the oil would remain an ingredient alongside pomegranate, red beet juice, organic spinach, kale, and Rumble’s signature protein blend.

“We searched for months until we found a partner who could work with organic flax seed oil,” says Underhill, noting the beverage is made in a secret facility in the Unites States.

Today, Underhill sells Rumble in Canada as a nourishing drink at over 3,000 grocery stores.

Rumble is also the first drink in Canada to be labeled a “nourishing drink” by the Canadian Food Inspection Agency. The category was created in 2012 just for Rumble, which didn’t qualify as a meal replacement because its ratio of omega-6s to omega-3s didn’t match CFIA guidelines. To be a meal replacement, a drink needs to contain a 4:1 ratio, but the Rumble team follows new research that shows the quantity of omega-3s should be double that of omega-6s for ultimate health benefits—hence the importance of the flax seed oil.

Branded aluminum bottles highlight the protein content – 20 grams – and the drink’s promise to “feed the good,” with its more than 3000 mgs of omega-3s, eight grams of fibre, 400 mgs of calcium, and natural fruits and vegetables.

In Canada, Rumble is available in more than 3,000 grocery stores and online on The company did a test launch of Rumble in the U.S. in 2015 and 2016 to great success; now, the Rumble team is working with a new production partner to prepare to re-launch online sales in the U.S. in 2018.

“Rumble didn’t exist when I was waiting for transplant, but what did exist was Sandra,” Underhill says. “She made my shake—the essence of Rumble—daily to keep me alive.”

“A lung transplant isn’t a cure. I’ve exchanged one set of difficulties for another.”

With new lungs and a new lease on life, Underhill forged ahead after his surgery. A year post-transplant, he won five gold medals in the Canadian Transplant Games. Two years post-transplant, he biked 750 miles for a fundraiser for Cystic Fibrosis Canada and helped raise hundreds of thousands of dollars for CF research.

Rumble has brought Underhill full circle: he developed the drink to keep himself alive, and now, the success of the business has become the perfect platform for him to advocate for both CF and organ donation to help prolong the lives of others.

Meanwhile, he continues to face health challenges. The anti-rejection medication he takes is harsh on his kidneys, which have been causing him problems. “A lung transplant isn’t a cure. I’ve exchanged one set of difficulties for another,” he says good-naturedly.

But like every other challenge Underhill has encountered in his 47 years, he faces those to come with a positive mindset. “When I meet a challenge, when I hear I can’t do something, I think ‘Yes, I can.’ If you want to see me do something, just tell me I can’t.”


What Rap Taught Me About Diabetes

Living with Type 1 Diabetes isn't glamorous, but its made an indelible impression on my music.

No seizures, No cottonmouth. When the beat begins and the stage feels unsteady beneath my feet, this is my mantra. Though it is not an inspiring mantra, it keeps me vigilant. I have Type 1 Diabetes, and I don’t need inspiration. What I need is focus.

Writing, recording, and performing songs under the moniker Q Curius (named after a very unpleasant Roman senator) with my friend and producer Joel Calvert, I have entered a new ecosystem of diabetic fear. Recently we had our first show. I learned that performing original material becomes much scarier than covering other people’s songs.

Singing or playing an instrument in front of other people cultivates a unique terror. That is true for almost everybody. This fear, however, is usually disproportionate to the actual danger involved. You could fall off the stage, I guess, or muck up your songs and become an object of pity or scorn for an evening, but generally speaking there isn’t very much to rationally fear when you perform music.

Type 1 Diabetes gives you real reasons to be afraid. When you perform, stress surges, and this surge can tamper with blood-glucose levels in dramatic ways. Depending on your personal physiology, adrenaline can cause your sugar levels to skyrocket (causing dehydration, cottonmouth, nausea, and general ickiness), or to plummet (causing, in extreme cases, hypoglycemic seizures).

These extreme results are unlikely, but they do add another layer of tension to my mind, which already has a lot to handle. The thought of unstable bloodsugars damages the performance more than the actual dangers threatening it. It’s a strange place to be, this ecosystem of fears, and a difficult place in which to find sense or meaning.

Diabetes is not a visible disability. Unless you tell the audience you’re performing with Type 1, nobody will know or care.

Diabetes is not a visible disability. Unless you tell the audience you’re performing with Type 1, nobody will know or care. Compare this to the artist Gaelynn Lea (whose song, “Someday We’ll Linger in the Sun,” is lovely), who suffers from brittle bone disease (Osteogenesis imperfecta) and must visibly grapple with her violin to play it. Her music is good enough to make this struggle an afterthought, but still, watching her prevail over her disability adds poignancy to each performance.

Compared to Gaelynn Lea, diabetic performers have little to complain about. Our disease will not prevent us from holding a guitar or dancing around a stage. The barriers that diabetes erects between the performer and the performance are subtle, psychological, nagging. There’s nothing poignant about that, nothing to inspire a viewer. So what does it mean to be a musician with Type 1 Diabetes, if anything?

Q Curius, getting over his stage fright in front of some friends.

When setting out to write this essay, I wondered if other diabetic musicians could offer some insight. A handful of famous musicians are Type I Diabetics, but when their disease comes up in interviews, they fail to reach the surface of the issue, much less scratch it. Their speech is dominated by platitudes about “staying positive,” “not letting the disease control your life,” and “not letting diabetes get you down.” All of which is vaguely helpful, in the sense that tissue paper can be helpful when bandaging a wound.

It’s not their fault. The problems of diabetic life tend to be bland and tedious, so it follows that one’s responses to the disease would be bland and tedious.

In any event, my quest to garner insight from famous diabetics failed. I turned instead to my experience as a performer, limited as it is, in my search for meaning. It occurred to me that thinking about diabetes as a performance might become helpful.

It occurred to me that thinking about diabetes as a performance might become helpful.

I recalled that during performances, there sometimes comes a moment when the fear (of forgetting lyrics, stepping on the mic cord, and so on) recedes, and the performer can mentally step outside himself and begin to observe: Look over there; a guy is doing a dance move that I want to try later when nobody is watching. That girl seems to know the lyrics better than I do; why isn’t she performing? That child is very small. Who brought him? Should I avoid saying “Fuck” and all of its permutations? Too late.

These moments of detachment come and go very quickly, and I would not call them “a zone.” When you float into them, your consciousness splits between performing and being aware of performing, which can become distracting. Part of your brain performs, and the other part runs commentary on the performance.

In the mind of a diabetic, there is nothing but commentary. Doubt, counter-doubt, boredom, detachment, anxiety; all of these things get in the way of the “performance” of taking care of one’s disease.

Doubt, counter-doubt, boredom, detachment, anxiety… these things get in the way of the “performance” of taking care of one’s disease.

In both music and diabetes, part of me wishes for a Big Moment; a moment of reckoning that brings my life clarity, meaning, or some species of catharsis. In music, the Big Moment never comes because the constant practice and anxiety leading up to a performance makes the actual performance feel like a small moment. You practice, you feel afraid, and then, very soon, it’s over.

With diabetes, the Big Moment can only be dangerous (barring a cure), and there is nothing but practice. The rehearsals–pricking fingers, injecting insulin, fiddling with one’s insulin pump–never end because you’re practicing for your survival. Your cells become trillions of stages on which you perform. If you perform poorly, your biological audience will throw sugar molecules on stage in disgust.

It’s useless to wish for a Big Moment. In order to be good at something, you must love the work of it. To be good at basketball, you must practice free throws and unglamorous footwork, and like it. To be a good writer, you must love the work of bloodying your hands on recalcitrant sentences. This axiom is much easier to recite than to practice. But if it’s true, then in order to be a good diabetic, you must love the work of taking care of yourself. But how can this be so?

In the case of music or basketball or writing, the unpleasantness of the work chisels something good out of the raw material of your experience. This external good–a song, a performance, a pretty jump shot, a poem, whatever–rewards work in proportion to the care and vigor of the worker. In the case of diabetes, all that chiseling serves only to keep something very bad at bay. That Very Bad Something is the threat of accelerated bodily rot, which never stops coming at you.

You enter this fight with the knowledge that you are going to eventually lose.

You enter this fight with the knowledge that you are going to eventually lose. You know you’re going to die. This foreknowledge of defeat can make the difference between vigorous and lazy self-care seem trivial. Why bother practicing well when the game has been rigged against you?

But health isn’t trivial. The famous musicians and their cliche army are right: you can’t let the disease rule you. You won’t win the war, but that doesn’t mean you shouldn’t fight. Fear and anxiety do not absolve you of the responsibility of taking good care of yourself, just as fear and anxiety do not necessarily prevent you from playing your songs with enthusiasm.

It may not be possible to “love” the performance of being diabetic, but it’s possible to stay motivated, pay attention, and convince yourself that health matters. With diabetes, your rehearsal is also your performance, and the quality of your performance depends on you caring about your health and continuing to care.

During a recent Q Curius show, a little kid kept darting through the thicket of knees at the front of the crowd to join me onstage. He wanted high-fives. I was afraid of forgetting the lyrics, botching the high-fives and throwing myself off rhythm, or worse, stepping on the kid. I got paranoid about everything, and began to think the words seizure and cottonmouth again.

The kid waved his hand around while I sang; I paced around and avoided him. He followed me. I finally relented and high-fived him. After that, I was having fun.

It may not be possible to “love” the performance of being diabetic, but it’s possible to stay motivated, pay attention, and convince yourself that health matters.

Type 1 Diabetes is a little kid who always wants a high five. I’m sure many chronic illnesses are similar. Such a kid can be annoying, distracting, or even fear-provoking, but no matter what you think of him, he will keep demanding a high five, and go on demanding it as long as you live.

You won’t shake him, but you can control the way you think about his presence.

I do not think of myself as a diabetic “patient,” or one who “suffers” from diabetes. The disease is a scientific label given to a fact about my body, a defect that will go on being defective whether or not I wrap around it the cloying language of suffering or the numbing language of empirical science.

In both cases, the description has very little to do with the experience of being diabetic. Neither self-pity nor scientific detachment will make the body get better. Still, one’s posture towards the disease matters, just as one’s posture onstage matters. The crowd–whether comprised of cells or human beings–will be able to tell if you give a shit about your performance.

Music has taught me to take health seriously, but also to relax instead of counting my fears. The kid shadows me with his hand out, and he isn’t going anywhere. I’ve learned to dap him up.

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.”


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!”


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.