Wednesday, April 25, 2012

Just a Social Diabetic (DSMA topic)

Today's DSMA topic was about diabetes in social situations - how it helps, how it hinders. The help part seems obvious to me, though probably not to others: I've met some truly awesome people, both online and in person, who I never would have met had it not been for this community and this condition. It's also a good conversation starter, if the other person is interested in learning rather than mentioning my pump with judgment and preconceived notions. The hindrance to being social with diabetes is more obvious. (That phrase makes me want to say, "Oh, but I'm just a social diabetic!") Having low or high blood sugar at an event can lead to a lack of fun, mood swings, being grumpy (though it's a great "forgive my grumpiness" card), or having a hard time getting there at all. Like I said on the chat, I have managed to have some truly Dadaist conversation when I'm low, but that's not necessarily a terrible thing when you hang out with artsy types.

I think I first learned that diabetes can be a social drag the day I was diagnosed. It was my best friend's 13th birthday, and I had gotten the call that morning. They still didn't know what to do with my astronomically high-testing but asymptomatic self, so I went to the party under a haze of misinformation, guilt, and the knowledge that my life had irrevocably changed but I wasn't sure how yet. I don't think I was the best of company that day, though I tried to suck it up - I almost cried when I was offered birthday cake and I had to say, "I don't think I can have that." In many ways, as I've become more informed and taken more control, my diabetes has less control over what I can do. In fact, it barely has any control over me at all, socially, but that's not for lack of trying.

The funny thing is that, paradoxically, the pump has made my life easier, but socially it makes things a bit more difficult. It's a small but annoying presence in the way supplies that aren't attached to you all the time can ever be. It definitely makes water-events difficult - finding some place to stash it can be tricky. If there's a hot tub, it has to be removed entirely or the insulin inside will spoil (yes, I know there are diabetes warnings on hot tubs, but once in a while you don't want to pass up the hot tub party). Going clothes shopping with friends can be a hassle as sometimes it takes longer to try things on. And trying to find the one spot to put it so that you can't see a bump on a hot, clingy dress is definitely a balancing act. Sometimes, it just doesn't want to stay on.

This weekend, I performed in the Music of the Stars concert at the Ontario Science Centre for the Roberta Bondar Foundation, with Dr. Bondar participating. For all my non-Canadian readers, Dr. Bondar was the first Canadian woman in space; "kind of a big deal." The concert was terrific, just a magical evening of world premieres, ethereal and gorgeous harmonies, and even a choral number with a space shuttle launch simulation in the middle of it that shook the entire hall, and practically convinced me I was low. I always think I'm low when I'm performing; turns out I'm usually just nervous, spiking high due to nerves, and occasionally I really am, which screws up how well I'm able to hold myself together. Now that I have the pump, I'm terrified that an alarm is going to go off while I'm onstage and it's tucked into my underwear under a dress. For a person who spends a lot of her time in hushed theatres, the pump alarm constantly weighs on my mind. I constantly have disagreements with my care team over whether I can set it to vibrate or not. I know it's important that I perceive it when there's an issue, but it's less wonderful when everyone in the theatre or concert hall can!

My pump sometimes creates awkward situations, it's true. I was halfway through the concert (standing front row, centre) when it went rogue and tried to flip over and drag off the majority of my undergarments. It's not quite Six Until Me's "Disco Boobs" story, but it certainly gave a (personal, quietly, generally unnoticed) frantic air to a serene piece as I unobtrusively saved myself and thanked the powers that be that our performance outfits are long dresses. Body tape may be purchased soon. One of the ideas that has always been in the back of my mind is to start a line of formal pumpwear - awesome, kicky dresses with an internal, hidden pocket, the back of which opens and then closes around the pump tubing, perhaps with velcro or a zipper. We could do swimsuits, too. If I had the design and creation acumen, I think the market might be there.

Sometimes social situations turn into diabetes magic. My undergraduate institution holds a blowout event for all alumni every year called "Reunions." It is rumoured to have the second largest beer order of a single weekend event after the Indy 500, and it may be the best weekend of my year. Last year, with my new constant basal, I discovered something amazing - drinking beer and running around all day with my friends meant awesome numbers. I was eating decent size hoagies (from Wawa, or The Wa, if anyone is from that area of New Jersey) and not bolusing, and I was still going low. It was like my diabetes was telling me that partying was good exercise. (Party - and exercise - responsibly, kids.)

And then, sometimes, diabetes causes awkward social situations for other people. My favourite story occurred when I was in undergrad, and my parents had come to help me move out at the end of the 2004-2005 school year. We went to a Mexican restaurant called On The Border (I think that was the only time I've ever been there) to celebrate a job well done. I ordered a Diet Coke (many a diabetic's addiction). The drinks came, and mine tasted funny. I think all diabetics have had the shared social experience of asking a friend or family member, "taste this - does this taste like diet, or regular?" Dan and my parents agreed that it was probably the latter. The waiter came back, all friendly and smiles, asking if we need anything.

I said: "Oh, I'm sorry, but I think this Coke is regular and I ordered diet.
Waiter (grinning): "Oh, yeah, sorry, that happens sometimes. Well, haha, at least you're not diabetic, right? Ha!
Me (evenly): "Well, actually..."
Waiter (all colour draining from his face): OH SHIT!

He grabbed my glass and sprinted away. My entire table cracked up. For a moment, it was almost all worth it.



Monday, April 23, 2012

The Shakesbetes Rep Company

Shakespeare is famous for astutely writing about the human condition, but I think it would be even more awesome had he written about the diabetic condition. One Wednesday's DSMA introduced the idea of Shakesbetes (the writer, not the hypoglycemic reaction). Since then, I've been thinking about various plays for the Shakesbetes Rep Company, exploring what a comedy or tragedy this condition can be. So in honour (or in dishonour) of Shakespeare's birthday today, here's a partial list:

‘Betes Andronicus: Tamora, upon hearing that the pie she has consumed was made from his own children, freaks out because she now has no idea of the pie’s carb count.

A Midsummer Night’s Low: four young people in love bitchily stumble around making poor choices as if drunk, for no apparent reason.

Hancet: Suspicious of the circumstances surrounding his father’s death, a young man bluntly needles everyone around him, running several of them through.

As You Spike It: Rosalind is a pizza, but she dresses up as salad to get closer to Orlando. He can’t figure out why she makes him feel so funny inside.

Twelfth Night Correction: A mother tests the BGs of her twin T1 children, Viola and Sebastian, twelve times over the course of the time she should be sleeping. After mistaking their readings for one another’s, she gives up and throws herself into the sea.

The Winter’s Fail: Furious at his meter’s inability to work in cold weather, Leontes orders it to be destroyed, but comes to repent his jealous decision. Features the famous stage direction: Exit, pursued by a carb.

Oh Hell No: Jealousy over who has the lower A1c grows toxic, and results in strangulation.

King Liver: When a ruling organ goes to divide his inheritance, he asks each hormone how much she loves him. Insulin says, “I love you according to my bond, which makes you more permeable to glucose and activates enzyme systems, helping you uptake and properly use sugar.” He disinherits her.

The Error Fives of Windsor: A madcap blood glucose sex comedy, wherein Falstaff fails to get either the girl or a correct reading.

The Merchant of Medicine: A pharmaceutical company demands its pound of flesh when Antonio cannot produce his insurance policy. (The Merchant of Menace?)

Much Ado About Nothing: Is Beatrice having complications, is she Real People Sick, or is she just tired? Whatever it is, Benedick is going to get an earful.

The Comedy of Errors: When a pair of twins, one a T1 and one a T2 diabetic, are mistaken for each other, “hilarious” misconceptions and judgments ensue.

Love’s Labour’s Lost in Measure for Measure: An A1c just won’t come down, no matter how much work our protagonist puts in to a regimen.

Something tells me funding for the Shakesbetes Rep Company may be limited. But that’s okay. All’s well that ends well.


Wednesday, April 18, 2012

Coming to a Bestseller List Near You

Coming soon from Random Fasting Glucose House Publishers: A new noir crime drama

Find thrills, chills, highs and lows with: The Insulin Thief

John’s pancreas might be firing blanks, but the gun he carried shot the real kind. Other men have their hearts stolen, he mused. Why couldn’t I have been so lucky? There was nothing more to say – his insulin was gone, and nobody had seen it go; or if they had, they weren’t talking. To make matters worse, he was getting low on cash – he seemed to be bleeding it out even faster than the stuff that caused his meter to beep.

Joe was dealing with an insulin thief, and he wanted answers, sooner rather than later; the thief had worked fast, and for all he knew, was long gone. Half the time he couldn’t tell if he was shaking with rage or hypoglycemia.

Joe’s finger tensed on the trigger of Lancet, his beloved .45. Big Pharma knew something, he was sure of it. He could never quite figure out Big, or what he was up to. The man certainly loved his excess, and never passed up an opportunity to shake Joe dry. Of course, he had dirt on Joe – who didn’t? But to Joe, the brazen blackmail meant Big was scared; as usual, he was slowing down an investigation. He had pressed this notion the last time, and it had not gone over well. “Blackmail is such an ugly word,” Big crooned, almost lovingly. “I prefer to call it…insurance.” And to show he wasn’t bluffing, he raised Joe’s “premiums.” Hans Langer, Big’s cartoonishly German assistant, had escorted Joe out. Joe saw the briefest flash of pity in the man’s Teutonic visage, and as he was shoved through the golden door, he thought he heard the briefest, accented whisper…”you’ll find what you seek…on the islet.”

What that meant, Joe had no idea. But he couldn’t pass up even the barest hint of a lead. He was running out of glucose tabs, and he was running out of time.

He was going to find that insulin thief, and he was going to make him pay.


Monday, April 16, 2012

Diabetes and the Narrative Impulse (Harry Potter vs. Owen Wilson)

When a person is diagnosed with diabetes, one of the (unhelpful) responses we often get is “well, at least it’s not cancer.” Why do people focus on this particular comparison, minimizing the impact of diabetes? In the theatre, one of the things I’m fascinated by is the concept of the illness narrative – whether it be AIDS (The Normal Heart, Angels in America), Cancer (Wit is probably the most famous) or mental illness (Proof, King Lear, 4.48 Psychosis, too many to count), among others. These narratives show us how people and society deal with the concept and reality of illness.

The comparison between cancer and diabetes intrigues me, because cancer is far more traditional from a narrative standpoint, and perhaps that’s why it gets so much attention and sympathy (and is popular in theatre, novels, etc.) – there’s a bad guy, your life is on the line, you fight him and either lose bravely as a martyr or emerge victorious as a hero. The plot is traditional and as potentially satisfying as a narrative can be.

Diabetes is a non-traditional and frustrating illness narrative because it is chronic. At least, with cancer, you can WIN. There is no winning in diabetes. There is doing better, and doing worse. And it’s a fatalistic narrative that you have to fight against mentally, because there is an almost 100% chance that, no matter how long you live, the “bad guy” will quietly win – diabetes will at least be partially if not fully responsible for your death. People with chronic conditions have to adapt to the nontraditional illness narrative, the one where illness becomes static and isn’t filtered through a satisfying narrative goal. People thrive on creating stories for and about themselves. That’s why stories are there; they shape our lives, and how we understand ourselves. And that’s why there is so much diabetes burnout- the “goal” isn’t victory, it’s daily survival. It's also why it's harder to fundraise for chronic conditions, unless you show pictures of adorable children. A vital community is necessary when it comes to diabetes – it must be continuous, always there, flowing like the condition itself. It’s why people blog – they are creating and sharing their stories.

So with diabetes, there is no large, exciting battle, only many everyday ones. It’s not Harry Potter. It’s not Spider-Man, Transformers, or The A-Team.

It’s Office Space, and your diabetes is that annoying boss, Bill Lumbergh, and man, do you ever have some TPS reports to file. And just like you can do the same thing with diabetes day after day and totally different things happen, today you need a cover for your TPS reports and you didn’t realize it. Didn’t you get the memo?

Yes, diabetes isn’t Frodo vs. Sauron. It’s more like a terrible buddy-cop-romantic comedy movie starring a bumbling Owen Wilson.

Stick with me on this one.

So Owen Wilson, force rookie, and his older, beleaguered partner, let’s say Tom Hanks, or maybe Denzel Washington, are patrolling your insides. The autoimmune team. And Owen Wilson is your best friend, but he’s a hothead and HE’S A COP WHO DOESN’T PLAY BY THE RULES! Yeah, one of those. He’s going straight for the top, but then he takes too many chances and accidentally shoots your innocent pancreas, who is probably played by Ben Stiller or something. And there’s a total mess and DenzelTom says, “This is what happens when you don’t PLAY BY THE RULES.”

Anyway Owen gets kicked off the force and he feels really guilty about it, so he decides to move in with you to make things right. He’s always hanging around. It’s like You, Me and Dupree, or something (disclaimer: I have never seen You, Me, and Dupree). And you just can’t make him move out because you feel guilt for some reason; maybe it’s that Wilson charm, maybe you feel partially responsible, maybe he just keeps on coming up with more and more convoluted reasons to stay. So you have to deal with him clogging your sink and never cleaning his stuff and breaking your lamps from time to time. And that’s the narrative. Owen Wilson screwed up on the job, he’s moved in with you, and one day his comical antics will inevitably burn down your house. Cancer is Lord Voldemort. But Harry (spoilers) beats him. You’re stuck with Bill Lumbergh, and you’re stuck with Owen Wilson.


Friday, April 13, 2012

A Breakup Song

Once in a while, I ask myself, “Self, how do I launch you into international music fame?” Successful musicians capture the attention of their audience by singing about relatable and universal themes. Adele, I’m told, did spectacularly well with a heart-wrenching album full of break-up songs. I was thinking about this. Now, my audience here is primarily diabetics and those who love them. So what better album to drop than a bunch of old-fashioned pancreas break-up songs?

My first single off the album is “The Pancreas I Used To Know,” with very sincere apologies to Gotye’s “Somebody That I Used To Know” (original song here, if you’re one of the two people who haven’t heard it- see what I mean, breakup songs = international fame!)

Now and then I think of when we were together

You self-corrected for each piece of cake or pie

Told myself I’d always be this free

And you’d be a functioning part of me

Now high blood glucose causes aches that might dismember

You can get addicted to a functioning endocrine system

It was a thing I didn’t think I had to attend

But with a random fasting test

I knew you had been laid to rest

And I’ll admit that I freaked out when we were over

But you didn’t have to cut me off

Crap out like I just malfunctioned and then you were nothing

I didn’t ask for constant love

But right now you’re trying to kill me and that’s kind of tough

You didn’t have to stoop so low

Now my glucose is so high you really changed my numbers

I really don’t need that, oh

Swearing at that pancreas I used to know

Think about that time when my immune system screwed me over

Other people thinking it could only be what I had done (that poor Type 1)

No, I don’t want to live this way

Poking at my body every day

Why did you have to up and go?

I can’t help but feel betrayal from this pancreas I used to know

But you didn’t have to cut me off

Crap out like I just malfunctioned and then you were nothing

I didn’t ask for constant love

But right now you’re trying to kill me and that’s kind of tough

You didn’t have to stoop so low

Now my glucose is so high you really changed my numbers

I really don’t need that, oh

Swearing at that pancreas I used to know

Swearing at that pancreas I used to know

…I think I’m going to have to work a bit harder for international fame. Maybe BlΓΌnt Lancet will sign me?


Wednesday, April 11, 2012

Welcome to Diaturgy!

Dear World,

I have this dream. Well, I mean, nightmare. I’m standing at the gates to the afterlife and the God of Diabetes is judging me. The God of Diabetes is always portrayed by Wilfred Brimley. Come on, you know who I mean, you’ve seen the commercials. Guy with a walrus mustache, “If you have…diabeetus.” Wilfred is judging my final fate. In front of him is a scale, with a blood glucose meter on it. It’s a clear callback, my dramaturg brain notes, to the Ancient Egyptian myth of judgment, where your heart is weighed against a feather. If it’s lighter or as light, you go to heaven. If it’s heavier, your heart gets eaten by crocodiles. This is either lodged in my brain through history classes or through Sesame Street’s seminal treatise, “Don’t Eat the Pictures,” I’m not sure which. In this test, if my BG is 4-6 (mmol/l; it's a metric scale), I get into heaven. 6-8 and I get into heaven but I have to pass the written. I test and there’s a strip error. I give Wilfred a buck to buy another strip and test again. The result is in. It’s 8.5. Fuck.

“Diabeetus,” intones God Brimley, sadly. It’s all he says. Crocodile time.

Then I wake up.


It has come to my attention that introductions are hard, particularly trying to introduce something you've been thinking about for fifteen years, when Blogger was but a twinkle in a developer's eye. My name is Ilana Lucas. I am a Type 1 Diabetic, and I have been mulling this idea over and over in my head since I was diagnosed hours before my best friend's 13th birthday party (I was 12) in 1997. My diagnosis story is atypical. My mother had insisted that I get tested because my first cousin had recently been diagnosed with classic symptoms at the tender age of four, and, well, who's the comedian who, on the subject of a disease, says "it doesn't run in my family; it gallops"? That's the case for my family and various types of diabetes (it's nowhere near as prevalent in my family as many, but it still seems to happen often enough). The doctor initially refused but humoured my mother. My fasting test came back at 27 (486 for the non-metric; whatever scale, it was bad).

When I was diagnosed, I wasn't put on insulin immediately. I have no idea why. The doctors seemed to think diet would help. It didn't. They thought metformin would help. It didn't, though it helped nauseate me constantly. It didn't help to the point where I didn't know whether it helped or not, since I hated my numbers that I could never get right, I stopped testing.

At 15, my pancreas finally gave up the ghost and I was mercifully put on insulin. My endocrinologist tells me I'm a Type 1. I'm beginning to wonder if I had a case of LADA, even though I was young. The consensus seems to be that I was a Type 1 caught very early thanks to my mother, but I've never been able to shake the worry/guilt that the (100% undeserved by anyone) stigma of Type 2 applies to me. I don't know how to define myself. It bugs me.

I didn't take care of myself for a long time. I had a fatalistic attitude toward my condition. I'm a perfectionist with an obnoxious resume: top of high school class, Princeton grad cum laude, Columbia grad school grad cum laude. I tried to be the perfect child and I never rebelled. Except for this. Diabetes was my rebellion. It was the only test I couldn't be perfect at so I ignored it. Unfortunately, it was the test my life depended on.

It's only been in the past couple of years that I've shaped up and accepted myself and what I have to do, though I'm still not perfect. I attribute this to a combination of a wise voice from grad school, and my introduction to DSMA, Diabetes Social Media Advocacy. It's not an exaggeration, though it sounds silly, to say that the other diabetics I have met through social media have changed my life. I went from MDI to a pump (Animas Ping) in November 2010, and brought my A1c's into the best shape they've ever been by a long shot, though I recognize I have a long way to go.

Other things about me: I'm currently a contract professor of English; I'm engaged to a wonderful guy I met in undergrad, and I sing in a choir and play rock handbells with five other rockin' chicks in our group, Pavlov's Dogs. I blog about theatre and music here.

Why Diaturgy? My great love, and educational background, is in a field called dramaturgy. A dramaturg is the equivalent of a theatrical consultant; she or he, through a combination of research, teaching, writing, mediation, conversation, and working with playwrights, directors, and actors, is responsible for ensuring the most powerful and accurate communication of the theatrical event possible. A dramaturg bonds everything together, functioning as a bridge between audience and production, and as a bridge between various parts of the production. The key word for a dramaturg is communication. In this blog, I hope to communicate; to dramaturg my diabetes. I hope to be a bridge between myself and other diabetics, myself and non-diabetics, and, I hope, between others who might want to enter into the conversation. I hope to do this with thought and passion.

But first, I intend to tell you why diabetes is like a bad buddy cop movie starring Owen Wilson, and I intend to share some of the silliest song parodies imaginable. Because I'm like that.

Thanks for reading!