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Diabetes

Everday Carry: Type 1 Diabetes

In the first of a series, we asked four people with type 1 diabetes to open their bags and show us the gear they can't go anywhere without.

Medication is only part of the picture when it comes to dealing with chronic illnesses. In many cases, self-care involves a host of other items that you’ll need to have on you at all times.

So inspired by the Everyday Carry movement, we asked four people with type 1 diabetes what’s always in their bags—the essentials that they bring with them everywhere, no matter what, whether it has to do with diabetes or not.

Henry Jensen, student

Henry Jensen’s Everyday Carry

I decided to start close to home. My son Henry was diagnosed with type 1 diabetes at the age of five, and he’s now 11. He’s a very active kid, doing folkstyle wrestling and Tae Kwon Do after school, singing in the choir and rampaging through the woods with his friends in endless NERF wars, so he needs an everyday carry that’s durable and portable.

Henry Jensen.

Henry has two electronic devices, his Dexcom continuous glucose monitor and his Omnipod insulin pump. The Omnipod is controlled by a special-purpose device about the size of a beeper, while the Dex just talks to his iPhone 8 via Bluetooth. Both have cases on them to protect them from drops and smashes.

When Henry is low, he treats with glucose tablets, which he keeps in a plastic tube. We order them by the jar from Amazon.

He also carries a lancet, in his case the Accu-Check FastClix, to draw blood, and test strips – his Omnipod device also doubles as a blood glucose tester.

In case of emergencies, he has a Glucagon – this is a single-use shot that basically pumps a life-saving dose of sugar into his bloodstream. He’s only had to use this once, at school, and it was pretty traumatic.

Also in the bag is ten dollars of emergency cash and a lucky bullet casing he found on a hike in the woods with his cousins.

He carries everything in the Henry Hero fannypack he designed for Myabetic, a company that specializes in cases and containers for diabetes supplies. He likes it because it’s spacious but has a fairly low bulge profile.

Rob Howe, podcast host

Rob Howe’s Everyday Carry

Rob lives in Dallas, Texas and hosts the Diabetics Doing Things podcast. He was diagnosed at 16 and has been managing his Type 1 for 13 years. After graduating high school as valedictorian, he went on to the University of Colorado on a basketball scholarship and spent a season playing with the Washington Generals against the Harlem Globetrotters. He started the podcast to share inspiring stories of people with diabetes doing amazing things in the world.

Rob Howe of the Diabetics Doing Things podcast.

Most of the time, Rob keeps a pretty light bag – just a glucometer and test strips in the front pouch of his backpack. He uses the Medtronic 670g insulin pump with CGM so typically doesn’t need to pack any additional supplies.

Living in the city, it’s easy to find a 24 hour store for juice or candy to treat lows.

When he travels, though, Rob carries a more extensive loadout.

He uses a cross-body fanny pack (“2019 is a great time for people with diabetes because the fanny pack is back baby!”) – to carry extra insulin pump sites, reservoirs, CGM sensors, insulin vials, syringes, Skin-Tac adhesive wipes, and tape for CGM sites. For weekend trips, he brings one extra of each, but if he’s gone longer than a week he brings one and a half times the normal supplies he’d use at home, just in case.

2019 is a great time for people with diabetes because the fanny pack is back baby!

“Being a person with Diabetes is a lot like being in the scouts,” he tells me. “‘Be Prepared'” should always be the motto.”

Carter Clark, photographer

Carter Clark’s Everyday Carry

Rock climber and photographer Carter Clark spends a great deal of time off the beaten path. From helping grow Panama’s Kalu Yala Institute, a sustainable village being built in a river valley to shooting for firms like Hipcamp and Patagonia, she’s always on the go.

As such, her everyday carry is a bit leaner and less dependent on technology than many other diabetics. Her climbing bag typically contains a tube of glucose tablets, a bottle of insulin and a syringe for emergency injections, a blood glucose meter, test strips and a lancet.

“Thats what I’m usually carrying around and what gets thrown in my climbing bag on a normal day out.”

She doesn’t use a CGM, preferring to trust her body’s awareness of her highs and lows to cue finger testing. She also uses a Medtronic insulin pump.

Kyle Banks, actor

Kyle Banks’ Everyday Carry

While performing in Disney’s traveling musical version of The Lion King, Kyle Banks started experiencing odd vocal issues and lost his voice. After a visit to an urgent care clinic and a blood test, he was diagnosed with type 2 diabetes and prescribed prednisone.

Kyle Banks.

When he returned home to New Orleans, though, his mother felt something was wrong and urged him to see a specialist, who determined that he actually had type 1.

After learning how to manage his condition, he’s returned to the stage and started a nonprofit, Kyler Cares, to provide supplies to young T1D children in need.

“Fanny packs are all the rage these days, so I usually alternate between three of my favorites.”

In his pack, Kyle carries the Omnipod remote, as well as test strips and a lancet for manual blood sugar checks. “That reminds me that I need to change my lancet.”

He carries candy for lows, either mints or fruit snacks. He also packs a juice box for “extra stubborn hypos.”

Finally, a USB cord is vital for charging his phone, which is paired to his Dexcom CGM.

Chronic Illness Diabetes Disability Features

When Diagnosis Leads To Entrepreneurship

Spina bifida, Parkinson's Disease, and Type-1 Diabetes. For these three entrepreneurs, their conditions were what launched them on the path of business success.

Some give into fear and uncertainty after a medical diagnosis. Others treat it as a call to action, reveling in the resilience, empathy, and creative problem-solving skills they’ll need to develop as they navigate life with a chronic medical condition.

It’s not too different, when you think about it, from the traits entrepreneurs need to develop to survive.

The CEO Who Wanted To Gamify Rehab

Just ask Scott Kim, who’s now CEO and cofounder of NEOFECT USA, a company that creates smart rehab products. Unlike most kids growing up in South Korea, Kim wasn’t allowed to learn Taekwondo. Kim was born with spina bifida, a condition where the spinal cord does not develop or close while in the womb. While other kids took Taekwondo, he spent countless hours in rehab from about the age of six to ten.

Scott Kim’s experience with spina bifida inspired him to create the RAPAEL Smart Glove.

“The biggest problem to me, besides the outdated facilities and tools [available to kids with spina bifida in South Korea], was I found it very boring and I wasn’t sure if I was progressing or not,” he says.

Fortunately, Kim did progress to the point where he was able to start playing sports with his friends at around 12 and 13. He even eventually started playing soccer competitively. But he never forgot the experience of having to sit on the sidelines, and when he went to the University of Virginia, where he earned an MBA, he focused on ways to improve the rehab experience for sports-loving kids like him.

What if they could gamify rehab to quantify progress and actually make it fun? He visited rehab clinics to hone his idea. “To my surprise, the rehab facilities that I saw in the United States in 2010 was not too different from the clinics I used in the early ’80s in South Korea,” Kim says. “A lot of things still look very analog. It doesn’t look very exciting. Doesn’t look like it measures the progress.”

To my surprise, the rehab facilities that I saw in the United States in 2010 was not too different from the clinics I used in the early ’80s in South Korea.

That’s why, in 2015, Kim’s company launched the RAPAEL Smart Glove for hand rehab. “Once you put it on your hand, it becomes a controller, so you can play games with the glove on at the same time you’re going through the rehab process,” Kim explains. Games include tasks like squeezing an orange, catching a baseball, throwing darts, or pouring wine.

Eighty percent of NEOFECT USA’s customers are stroke victims, according to Kim. “Others are traumatic brain injury or spinal cord injury patients,” he adds. NEOFECT sells its products to clinics including Stanford Healthcare and the Department of Veteran Affairs, as well as direct to consumer. “Our hope is that we can help people get access to the rehab tools at home so that they can get better,” Kim says.

The Woman Who Wanted To Make Type 1 More Fashionable

Carolyn Jager, founder of Sugar Medical

Carolyn Jager, founder of Sugar Medical, a line of fashionable and functional bags for diabetes supplies, also drew business inspiration from her youth. As a style-conscious teen who was diagnosed with type-1 diabetes at age 13, Jager didn’t like carrying around the ugly black medical bags that came with her glucose meter, so she’d make her own bags or have her mom make some for her.

Flash forward a few decades. After leaving a job as a buyer for Macy’s, Jager was looking for a new project. A family friend needed a pancreas transplant due to complications related to diabetes, an incident that served as a wake-up call for Jager. “It scared me quite a bit,” she says.

Jager launched her business in 2009. “I’m not a scientist or anybody who can cure diabetes,” Jager says. “But I could make improvements in how [people with diabetes] carry their glucose supplies and avoid complications that arise from poor glucose control.”

We’re offering the public a better way to carry supplies without people asking ‘what is that?’ This is a line of bags that no one would think are a medical bag.

Sugar Medical bags aren’t just pretty; they’re also practical. Jager points out that a bag with a bright teal stripe or a big purple butterfly is easier to spot in the bottom of your gym bag or across the room.

Plus, the bags include a built-in receptacle for glucose test strips that otherwise wind up everywhere. “There’s a vinyl-lined compartment which you can wipe out and clean,” Jager says. “It can hold up to 200 test strips. It’s not necessarily the diabetic who finds in the best feature; it’s the family members who don’t have to pick up strips all over the house.”

A look at Sugar Medical’s line of fashionable diabetes kits.

In addition to selling to consumers online, the 5-person company now has a licensing agreement with an insulin pump manufacturer, and the bags are included in a care kit provided to people who are recently diagnosed with type-1 diabetes. “We’re offering the public a better way to carry supplies without people asking ‘what is that?’” Jager says. “In the Type 1 and Type 2 diabetes community, there are a lot of individuals who are sensitive to being labeled as “diabetic” and are embarrassed to carry their supplies. This is a line of bags that no one would think are a medical bag.”

The Shoe Maven Facing Parkinson’s In Heels

Meanwhile, Tonya Walker received her diagnosis in adulthood, but like Jager and Kim, she used the experience as an impetus to make an impact on other patients and their families.

Starting around 2006, Tonya Walker noticed that her left arm didn’t swing when she walked, and had also lost dexterity. Two years later, the Florida mother, then 34, was diagnosed with Parkinson’s disease. “My husband and I went to the doctor together, and we didn’t talk about it the whole way home,” she recalls. “Really, we didn’t talk about it for five years. We basically chose to ignore it. I think I was living in denial. I didn’t tell anybody except for my immediate family.”

Walker loved high heels but Parkinson’s messed up her balance, so she could no longer wear them. Then in August 2013, Walker had her first brain surgery and her balance improved to the point that she could dust off her high heels. “We decided to start a fashion and shoe blog and use it as a platform to raise Parkinson’s awareness,” Walker says. “When society thinks of a person living with Parkinson’s, they don’t envision someone in their thirties.”

Tonya Walker, who has Parkinson’s, started the Show Maven to prove that fashion transcends illness.

The Shoe Maven launched in 2014, and has two main audiences, according to Walker. For people who don’t have first-hand experience with Parkinson’s, she says “they see fashion and may not even realize I have Parkinson’s.” Then as they read her bio or dig deeper in the archives, they might learn about her diagnosis and about the disease.

The other audience is people with Parkinson’s, especially with young onset Parkinson’s like Walker. “They can go to my blog see that I’m living a joyful, happy life with the disease,” Walker says.

The blog is mostly a passion project, but it has helped Walker raise money and open doors to other opportunities. For instance, she sold T-shirts called TSM Originals and donated $5 from the sale of each shirt to the Michael J. Fox Foundation for Parkinson’s Research. She also organizes an annual fundraising event called Art of Fashion in collaboration with local fashion boutiques, museums and galleries.

Walker’s online presence as a blogger has led to speaking engagements with pharmaceutical companies and community organizations. She also shared her story during the World Parkinson Congress in 2016 in Portland, Oregon. As Walker works towards higher-profile gigs as a motivational speaker, she says, “I don’t want other people to feel like they have to live in denial or secrecy.”

Diabetes Profiles

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.

Essays

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.

Diabetes 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.