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Essays

Being The Ideal Diabetic

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

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

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

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

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

 

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Essays

How Diabetes Made My Son Internet Famous

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

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

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

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Free hugs.

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

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

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

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

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

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

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This kid makes diabetes look cool.

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

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

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

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

For Angus c/o @theruralroost part 1!

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


Angus did it.

And then Buzzfeed wrote about it.

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

He was.

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

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

A video posted by Sara Jensen (@sarabeejensen) on

@tmareeharvey ❤️

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

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

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

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

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

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

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An internet star.

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

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

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

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

All photos by Sara Bee Jensen.

Q&As

The Blind Mountain Hiker Who Paints What He Feels

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

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

Where did your love of mountains come from?

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

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

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

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

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

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

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

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

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

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

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

Have you ever run into trouble in the mountains?

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

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

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

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Do you use any special equipment on the mountain?

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

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

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

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

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

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

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

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What’s been your biggest mountaineering achievement?

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

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

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

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

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

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

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

Essays

Playing Ball With Low Blood Sugar

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“He penalized any player who showed frailty.”

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

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

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

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

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

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

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

All illustrations by the author.

 

Histories

The Diabetic On Third Base

Chicago Cubs third baseman Ron Santo knew he was a great ballplayer, but when it came to his diabetes, he didn't think he was extraordinary.

On a hot August afternoon in 1967, Chicago Cubs player Ron Santo walked up to the plate at Wrigley Field and saw three Bill Singers, a pitcher with a fierce fastball, staring back at him. Santo had Type 1 diabetes, and his blood-glucose level had dropped suddenly. Now the world was in triplicate.

It was the bottom of the ninth, and the bases were loaded. The Cubs trailed the Los Angeles Dodgers, 2-0, and 20,000 fans were cheering for a hit. Santo looked at the trio of Singers and focused on the middle one. The first pitch blazed toward him “looking like it was attached to a Slinky,” Santo recalled in a 2003 essay in Guideposts.

He swung.

The ball soared out of the park, becoming one of his six career grand slams.

The stadium erupted over the dramatic win. Billy Williams, one of the players on base, began to jog toward home at a celebratory pace. Desperate to reach the dugout, Santo began shouting at Williams to “get goin’!”

Once off the field, he downed orange juice and ate three candy bars. “Then I went into the clubhouse, and my teammates and the reporters were waiting for me and I could barely talk — your brain quits working,” Santo said in a profile in the Chicago Reader in 2000.

Remarkably, this was one of the only times Santo had a diabetic reaction on the field.

In his rookie year, Santo kept his diabetes secret from his teammates.

In his rookie year, Santo kept his diabetes secret from his teammates.

When Santo’s doctor diagnosed him with diabetes in 1959, he was 18 and had just signed a pro contract. His one concern: Can I still play baseball? His doctor wasn’t convinced he’d make it through his first season in the minor leagues, let alone the majors.

After receiving this prognosis, Santo walked to the library for the first time since grade school and read up on the disease. What he discovered was far from reassuring. In Type 1 diabetes, known then as juvenile diabetes, the body’s immune system mistakenly attacks and destroys insulin-producing cells in the pancreas. Insulin is a hormone that signals cells to absorb glucose from the bloodstream for energy. Without it, excess amounts of sugar accumulate and cause vascular abnormalities and nerve damage, which can lead to blindness, kidney failure, hardening of the arteries, gangrene, and limb amputations.

He also read that the average life expectancy at the time was 25 years after onset, and he couldn’t find any reports of other diabetic athletes. “At that point, I said to myself, ‘I’m going to fight this thing and beat it.’ That’s how badly I wanted to live and be a big league ballplayer,” he told The Chicago Sun-Times in 1990. He headed to training, determined to keep his sugars down through diet and exercise — and his diabetes a secret.

Santo was a tough player and an eternal optimist — a combo that made him a perfect Cub, a team who hadn’t won the World Series since 1908. In the middle of his second season in the minors, Santo got the call up to the majors and walked out onto Wrigley Field as the Cub’s new third baseman. “I felt like I was walking on air,” said Santo. “There was an electricity and an atmosphere that I’d never experienced in my life.”

In the winter of 1961, Santo lost 22 pounds in three weeks, had to urinate constantly, and felt terrible pain in his right leg. A doctor told him that if he didn’t start taking insulin, he could lose the leg. Within three weeks of starting insulin injections, his strength began to return and he regained 15 pounds.

Later in his career, Santo was open about his Type 1 Diabetes, raising awareness for the condition.

Later in his career, Santo was open about his Type 1 Diabetes, raising awareness for the condition.

The injections made his secret increasingly difficult to keep. When he reported to spring training in 1962, Santo told the team physician about his diabetes and asked him to keep it to himself. He also eventually confided in his roommate, catcher Cuno Barragan, who became another set of eyes, watching out for when Santo turned pale. But he still feared that management would attribute any performance slump to the disease, and he wanted to prove that he could play baseball in the big leagues before telling them.

These were the days before glucometers and Santo had to monitor his blood sugar level by feel. According to the Chicago Reader, “Trying to juggle insulin injections with time zones, cold April nights, hot August days, extra innings, and late meals made that first year terribly difficult.” He batted .227, and he led National League third basemen in errors.

“You don’t know how tough it was,” Santo said. “It took me four years to adjust to the two-hour time difference in California, one hour in the east. Day ball was perfect for me. I could regulate things — get up in the morning, have my insulin at eight o’clock, eat a big breakfast, come to the ballpark, work out, have a candy bar or a Coke before the game, and then after the game get a Coke in me.”

The following year, he hit .297, made the National League All-Star team, and was named team captain. He also opened up to his teammates about his diabetes. For twenty-some minutes, he described his illness in a pregame meeting — the urine samples, blood tests, diet restrictions, and the dizziness that sometimes struck him on the field. When he finished, the locker room fell silent, and then someone shouted, “That’s okay, Captain. Let’s play ball.”

That’s okay, Captain. Let’s play ball.

His fellow players were unfazed, but Santo continued to keep the disease secret from the public until 1971. That year, he also started his decades long work to help raise awareness for Type 1 diabetes. A few years later, he joined the board of the Juvenile Diabetes Research Foundation, and together they began the annual Ron Santo Walk to Cure Diabetes, which raised more than $40 million during his life.

“It’s funny. I always thought I’d make my biggest mark as a ballplayer, but it was after I started speaking up about diabetes that I really made a difference,” said Santo in his Guideposts’ essay.

After 15 major league seasons, a 34-year-old Santo retired as one of baseball’s greatest third basemen, finishing with a .277 career batting average, 342 home runs, 1,331 runs batted in, and five Gold Glove Awards. He also set a record among third basemen for most games played in a season and most consecutive games played.

In 1990, Santo returned to Wrigley Field as a color commentator for the Cubs alongside play-by-play announcer Pat Hughes. After decades of hiding a big part of his life, he became known for his inability to hold anything back. He was the fans’ emotional id, groaning “Oh, nooo!” into the microphone when a play went awry and shouting “Yes! Yes!” with equal vigor when things went well.

“I always tell people that no former professional athlete ever loved his team the way Santo loved the Cubs,” said Hughes in a recent phone conversation. “You can think of any example that you want, Jerry Rice with the 49ers, or Wayne Gretzky with the Edmonton Oilers, or Larry Bird with the Boston Celtics. No star player ever loved his team the way Santo loved the Cubs.”

I always thought I’d make my biggest mark as a ballplayer, but it was after I started speaking up about diabetes that I really made a difference

And the fans loved him for it. “Every year that we’re a contender, like right now, the fans think this is the year,” said Hughes. “Ron embodied that spirit. He would never give up. Look at the way he handled his medical issues. He never gave up there, he never gave up as a player, and he always thought it’s about maintaining your optimism in light of horrendous circumstances.”

During these years, Santo’s diabetes began to catch up with him. He had heart attacks and underwent a quadruple-bypass surgery. In 2001, his right leg was amputated below the knee, and he lost his left leg the following year.

Santo is immortalized with his own statue in Chicago.

Santo is immortalized with his own statue in Chicago.

After each surgery, he returned to the commentator booth.

“We travel like absolute lunatics in the baseball business,” said Hughes. “We go coast to coast; you’re gone 100 days a year; you get in at four in the morning on a fairly regular basis. Here’s a guy in prosthetic limbs climbing up the steps to the charter airplane. He would grab the railing with his left hand and he had his cane in his right hand, and just by sheer willpower, he would pull himself up the stairs.”

The word “inspiring” comes up a lot when former players and sports writers talk about how Santo dealt with his diabetes. That’s not how Santo saw things though. He knew he was a great ballplayer, and believed he should join the ranks of teammates Ernie Banks, Ferguson Jenkins, and Billy Williams in the National Baseball Hall of Fame. But when it came to his diabetes, he didn’t think he was extraordinary.

[Santo] knew he was a great ballplayer… but when it came to his diabetes, he didn’t think he was extraordinary.

In 2008, he told The New York Times, “Until adversity hits you, and I had open-heart surgery and lost both my legs, you think, I can’t get through it. But really, you do what you have to do. I say that to everybody. You have only one way to go, and that’s a positive way.”

Santo died in 2010 of complications from bladder cancer. The following year, he was inducted into the Hall of Fame, and the Cubs unveiled the Ron Santo statue outside of Wrigley Field. The bronze likeness captures him in motion, throwing a ball to first base.

His son Jeff Santo, who made the 2004 documentary, This Old Cub, about his father’s life, spoke at the unveiling. “When we were going through the footage for the film … we found some film of my dad giving instruction on how to play third base. In the film he said this, ‘When the ball is hit to you, you should always move forward on the ball. Never stay back on the ball and let the ball play you. You play the ball.’ That’s how he lived his life. He never stayed back on the ball. He was always moving forward.”

Essays

What I Learned From A Summer At Diabetes Camp

Shaving-cream balloons, towel fights, poison ivy on the toilet seat, and lots of insulin injections. Just another day at diabetes camp.

Shortly after my diagnosis with Type I Diabetes, I pretended to shoot up heroin in the bathroom for the amusement of my friends. It went like this: lean back against a stall, inject insulin into the lower triceps, and moan something about “the good stuff.” I would excuse myself from class to do this, too embarrassed to shoot up in front of everybody.

My embarrassment surprised me. Months before, it would not have occurred to me to think of diabetes as a source of shame, or even as something particularly abnormal. Now, at fifteen, I was diagnosed and my attitude changed.

I grew up surrounded by the disease. Both of my brothers were diagnosed before me, and our early lives were littered with test strips and syringes. Familiarity bled diabetes of its mystery and menace. I became used to seeing beads of blood appear on my brothers’ fingers; until I held the pricker between my own, I didn’t understand how this act could make others squeamish. Similarly, I was indifferent to the sight of needles being thrust into arms, thighs, and stomachs. But soon, I would learn that injecting insulin tends to draw attention. Pull out a syringe, and the eyes of classmates swarm to it instantly.

campdiabetes_02

llustration: Shannon Wheeler

Diabetes isolates. Teachers shot me looks of annoyance when I pricked my finger under my desk, and I got red in the face when they called me out for eating glucose in class. But when they learned I was diabetic, and offered to make an exception for me, it was somehow worse. In this situation, not only does the unwanted attention bring discomfort, but you don’t think you deserve or even want the pity. The embarrassment of the diabetic, then, becomes hermetic and unassailable. It’s embarrassing to take care of the disease, and your embarrassment is itself embarrassing, because you don’t want it to be a big deal.

The embarrassment of the diabetic becomes hermetic and unassailable.

So instead of dealing with the mild mortification of injecting insulin during class, I turned it into something to laugh at. At parties, when people asked me what those syringes in my hand were for, I would respond with a significant look and a wink. Vague embarrassment in the classroom turned into making jokes about doing smack in the bathroom. Soon it became difficult to take diabetes seriously–growing up with it had normalized the disease, and making jokes about it obscured the dire reality.

That’s the thing about diabetic life. Somehow you trick yourself into thinking it’s not a big deal.

There was one place my brothers used to go where Type I Diabetes was no big deal–but it was also the only deal: Diabetes Camp.

Nestled in the hills of south Tennessee, Diabetes Camp distinguished itself to parents with its emphasis on encouraging kids to take care of their own condition. Rather than trying to give kids a break from diabetes, this camp wanted their campers to embrace the responsibility of their own treatment.

My older brother Mason was diagnosed when he was five, and my little brother William was diagnosed when he was nine. I wasn’t diagnosed until fifteen, so I never went as a camper. They went every summer to wield needles boldly, prick fingers in public, and generally escape the ambient low-level embarrassment of diabetic life. I stayed home.

The camp held semi-mythic status for my brothers, mainly due to the prank wars. My brothers tried other diabetes summer camps, but this particular camp was the coolest. To hear them tell it, other camps resembled prisons, with hawkish overbearing adults, and this one resembled nothing so much as a two-week Anglo-Saxon blood feud. In a good way.

Campers pitched battles with shaving-cream balloons… their opponents awoke on air mattresses drifting on the lake.

Campers pitched battles with shaving-cream balloons, and the losers retaliated with nocturnal raids, achieving varying degrees of ruthlessness. Their opponents awoke on air mattresses drifting on the lake, and the feud would continue. Kids brought rags from home, carefully selected and rolled into rat-tails. They returned to their parents at the end of camp with oozing wounds covering their legs, barely scabbed over.

William crossed a line in the prank wars one year by rubbing poison ivy leaves on toilet seats. Lax as diabetes camp was, it was this prank that finally earned him temporary exile: his sentence for the crime was being forced to return home early. For him, the exit was vaguely triumphant, and he was able to return the next summer.

Needless to say, diabetes camp sounded Valhallic. But until I was twenty, I never went, and so the concept of diabetic community remained abstract. Before my diagnosis I envied my brothers the two weeks during which they disappeared to Tennessee. They participated in a mythos I could not touch.

When, as a counselor, I finally had a chance to go, I didn’t know what to expect from a community of diabetics. The chaos surprised me. Here was a village of screaming unscrupulous children with tubes in their bellies and needles in their pockets. During dodge ball kids wolfed glucose tablets and leapt back into the game, sugar flying from their mouths. Others sat by, enduring the unsublime suffering of hyperglycemia, while their friends ribbed them for their testiness. Campers sweated test strips, and the fields and floors bespoke the messiness of diabetic life.

But this mess didn’t feel shameful. The diabetic detritus wasn’t all mine, and it served as a constant reminder of the community roiling around me. At any moment I might see somebody chugging juice with frantic low-blood sugar eyes, or irritably wringing blood out of a finger. It became difficult to see my disease as a unique experience, or something to be borne alone. At camp, diabetes didn’t isolate anyone. It was what everyone had in common.

campdiabetes_01

Illustrarion: Shannon Wheeler

Over time, checking my blood sugar stopped feeling like drudgery. The campers would have competitions, trying to see who could keep their blood sugars in the target range the longest. In this context, it was fun to be mocked by strangers for low blood sugar, or to provoke laughter for a grumpy high blood sugar. It wasn’t like when I pretended to my friends that my insulin was heroin. There was levity, but it did not spring from a desire to hide my own embarrassment.

In my experience, there is a tension between the dire and the blasé when you have Type I Diabetes. This tension makes it difficult to think about. It’s a serious disease, but not one that feels conducive to fear or self-pity. It can kill you quickly if you make a mistake, or slowly if you are negligent, but largely it’s a disease that bores rather than frightens. Checking blood sugar five-to-seven times per day, administering insulin for meals: these actions are fraught with mortal consequences, but it’s difficult to feel their weight. Instead, it’s all too easy to become numb to the cold stream of data that comprises the day-to-day mundanity of diabetic life. Taking care of your diabetes feels like having to remember to breathe–it’s tedious and perhaps slightly degrading, but you don’t expect anyone to feel sorry for you.

Taking care of your diabetes feels like having to remember to breathe–it’s tedious and perhaps slightly degrading, but you don’t expect anyone to feel sorry for you.

That doesn’t mean, however, that there’s nothing to be sorry about. That’s another thing I learned in Tennessee. Camp showed that diabetic life could be fun, but it was still deadly serious. One day, William was teaching archery when he noticed a little girl sitting in the weeds, refusing to participate. She was sulking. He went to comfort her, expecting to hear a story about fighting or bullying, friends being mean. If only it was that easy to fix. The girl had just gotten off the phone with her parents—she’d just heard for the first time that she had kidney disease.

Writing about diabetes, like talking about it, is difficult. You can’t find meaning or coherence in it, at least not easily. It is too serious to be dismissed, but its sufferers don’t need the rhetoric of strength or survival. It feels normal, but it isn’t. Too easily, I slip into a kind of fraught armistice with the disease, forgetting its dangers and resenting only its dreariness.

But that village of screaming diabetic kids kicked me out of my uneasy indifference. Their bleeding fingers, those snapping rat-tails, and the reek of bottled insulin everywhere eroded my embarrassment, while the mess of needles and strips chastened my sense of isolation. Nobody had to explain when they produced a syringe, and nobody had to hide their glucose tablets under a desk. For a few weeks, diabetes camp became a panacea for a condition too mild to complain about but too persistent to defeat.

More importantly, it reminded me that I don’t have to do pretend smack in the bathroom to give myself insulin. Unless I want to.

 

Profiles

Footloose And Sugar-Free

With a hip-shake and some hustle, cabaret performer Amanda Lynne powers through Type 1 diabetes to keep dance center stage.

With a hip-shake and some hustle, cabaret performer Amanda Lynne powers through Type 1 diabetes to keep dance center stage.

When professional burlesque dancer and cabaret performer Amanda Lynne was a teenager, she postponed being admitted to the hospital to attend a dance class.

Lynne, then age 14, had been diagnosed with diabetes at her pediatrician’s office on a Friday. The following Monday, Lynne met with an endocrinologist who shared the results of her pediatrician’s blood test: when measured, her blood sugar was nine times higher than what it should have been.

Alarming as the number was, it was already three days old. By the time Lynne met with the endocrinologist that Monday, her blood sugar had risen to such an extreme that doctors couldn’t even get a reading.

Amanda Lynne stands in of her Samba costumes in the Calabasas Village Club House. Photo: Marcia Garcia

“I was given a shot of insulin,” Lynne says, “to keep me from going into a diabetic coma. I was told that my blood sugar was so high I could possibly be dead in a few hours without insulin.”

The endocrinologist urged Lynne to check into the hospital for care and observation, fearing insulin shots alone might not be enough to avert coma — or worse. Lynne asked him if she could go home first and take a shower.

“And instead I put on my ballroom dance attire and went to a ballroom dance class,” she says. “I basically had told them, If I was going to die, I was going to die on the dance floor.”

It’s tempting to chalk Lynne’s priorities up to the youthful indiscretion of a fourteen-year-old. But two decades later, Lynne admits with a laugh, “I still feel the same way.”

A resident of Los Angeles and lifelong Californian, Lynne had wanted to be a dancer since she was a toddler. Initially inspired by a televised performance of The Nutcracker starring Mikhail Baryshnikov and Gelsey Kirkland, Lynne started watching classic movie musicals, including the work of Ginger Rogers and Fred Astaire. At age 2, her fate was instantly sealed. “I was like, I want to do that,” she says. “That was it for me.”

Lynne made her professional debut at age 12, performing at a Bar Mitzvah with an entertainment company that thought she “would be a great party entertainer.” Paid dancing gigs at small venues soon followed, including a can-can performance at a birthday party for former child star and Juvenile Oscar Award-winner Margaret O’Brien. By 15, Lynne had become a professional dance instructor and California’s youngest professional competitive ballroom dancer.

Photo: Cesar Vazquez

Photo: Cesar Vazquez

Now in her early 30s, Lynne continues to perform a wide variety of dance styles, including a style of cabaret that brings her love for old Hollywood, vaudeville, and the Ziegfeld Follies together under the name “cabaretro.” (Cabaretro is also her burlesque name.) Lynne also models and runs the cheekily named Sugar-Free Entertainment, her performance company providing dancers of all kinds — burlesque, ballroom, swing, samba, go-go — and related entertainers like jugglers and magicians to public and private events.

Her company name started out as a joke. When she was first launching the company, Lynne, who is a Type 1 diabetic, was working with a director and a producer who each happened to be Type 2 diabetics. “We were ready to open our show,” she says, “and we needed a name for the company. We were all putting stevia in our iced tea at the time, and I was like, ‘Oh, sugar-free entertainment!’” She laughs. “And they loved it.”

As her business name suggests, diabetes is as much a part of Lynne’s identity as dance is. Her email handle, in fact, is “thediabeticdancer.” But while dance is a calling, diabetes to her is simply a matter of fact. Not something to be celebrated necessarily, but not to be stigmatized either.

From the start, Lynne was cautioned that there might be times she would be afraid to talk about her condition or be embarrassed by it — warnings she never quite understood. “Why would I be embarrassed?” she asks. “This is something you just deal with. Other than a few things, it really doesn’t make anybody that much different than anybody else.”

“Why would I be embarrassed? This is something you just deal with.”

As a Type 1 diabetic, Lynne’s body doesn’t produce a sufficient amount of insulin, a hormone needed to regulate blood sugar. To keep her blood sugar levels in check, a Type 1 diabetic must either take regular insulin injections or use an insulin pump, a device about the size of an old-school pager that delivers insulin automatically through a needle in the stomach. Lynne opted for the former for numerous reasons, both medical and professional. Two practical reasons to avoid the pump: it doesn’t fit well with her body-hugging costumes, and it’s easy to bump.

“Any time that you are doing any kind of active dancing and are working with a partner,” she says, “you are risking hitting the site that’s going to have that pump.” Plus, she says, someone has yet to invent an insulin pump that’s “fashion-proof,” at least not as far as her revealing costumes are concerned. “Even with the modeling, that’s just not possible.”

Decades of insulin injections, however, have led to scarring, bruising, and lumps on Lynne’s stomach and legs, issues she addresses with body makeup and costuming whenever possible.

Lynne actually designs and creates her own costumes, both for herself and for her dancers, incorporating vintage beads, sequins, and broken jewelry from original costumes of classic Hollywood royalty like Mae West and Marlene Dietrich that, she says, can’t be archived anymore due to age or damage. By mixing these vintage bits and pieces with modern-day glitz and feathers, Lynne carries her nostalgia for old Hollywood onto the stage with her. Which is a far more fabulous accessory than an insulin pump.

No one has yet invented an insulin pump that’s “fashion-proof” as far as revealing costumes are concerned, says Lynne. Photo: Pete Ibarra

Keeping blood sugar on an even keel — not too high, not too low — requires balancing diet, physical activity, and even the stage of one’s menstrual cycle with insulin intake. It’s a delicate dance for anyone without adding strenuous exercise, late-night performances, and costume strategies to the mix. You’d think it must be difficult to rely on your body for your livelihood when your body is such a challenge to deal with.

But funny enough, Lynne is able to keep such a tight rein on her diabetes because she relies on her body for her livelihood. And vice versa. Much of what she needs to do to keep her diabetes in check — regular exercise, a “very, very, very strict” diet, routine — are also the things she needs to do to maintain her career. Just like any other professional performing athlete.

“It’s really nothing unusual as long as you are in control of what you’re doing, and you have a pattern,” Lynne says, “Just like every dancer is conditioned or every athlete, it’s the same thing with the diabetes. It’s just really that discipline. I don’t feel like my life is any different than any other dancer, other than the fact that I take an insulin shot.

She’s not unrealistic: Lynne recognizes that her condition can create extra complication at times, and there have been a handful of jobs she’s had to turn down because their circumstances would make eating or medicating difficult. But a change in occupation has certainly never been on the table. In addition to fulfilling her lifelong dream, dance is what Lynne credits for keeping her alive, healthy, and strong.

As far back as her diagnosis, in fact, she’d discovered that dancing, as a form of cardio exercise, helped improve her condition. Having left the endocrinologist that Monday for that illicit ballroom class, Lynne discovered when she returned to check herself in that night that “my blood sugar had lowered by the time I got back.”

Because their relationship is so symbiotic, she says, “both the dancing and the diabetes, I think, have been more a blessing to me than a curse.”