Diabetes Blog Week 2015 Day Six: Favourites and Motivations

If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written?  Is it diabetes related or just life related?  If you are a new blogger and don't have a favorite yet, tell us what motivated you to start sharing your story by writing a blog?  (Thank you Laddie of Test Guess and Go for suggesting this topic.)
 

Writing is very important to me. It’s a passion of mine. When I was younger, everyone thought I was going to write the Great Canadian Play. That may never happen, but I love getting to “write what I know” on this blog, and in the process, connect with other people in some way. Here are a few favourite moments, for me, in three categories.

 “Popular”

 My second-most read post of all time was one I almost deleted, because I wrote it in a very emotional space, and I was worried it would be controversial. “Liar” is about all the things, people, and institutions that lie to people with diabetes throughout our lives. It sparked a lot of discussion, was shared by many people and organizations, and even made it to a conference slide (which I found out about after it was posted on the Internet; it would have been nice to be informed or asked, thanks).

 “So when I hear that test strips can be +/- 20% in accuracy (a 10 could be 12, or 8) and are often worse, it makes me sad. Because it's a lie, and we're already dealing with so much misinformation, so many lies, that we'd like something to be true. Something that, instead, takes the best of us, the life from us–blood is life–and turns it into another lie. Something that comes from the heart, which is supposed to (but often fails to) be the truest thing of all.” "Cards Against Diabetes" is my most popular post because I think it’s a ton of fun, and it touches a nerve. Some people are turning against the game as becoming tiresome, offense for the sake of offense, but I think it works well in the context of diabetes – what’s more offensive than that? It’s nice to share our experiences, and make mocking matchups. One day it would be nice to play with a full deck (that’s how diabetes makes me feel, too).

 Pop-Culture

 I do a lot of pop culture referencing in relation to diabetes (see my Star Trek rant from Thursday). One of my favourite pop-culture posts is my comparison of the diabetes life to the life and mission of Buffy the Vampire Slayer (my favourite show of all time). It’s a constant, valiant, thankless and unpaid fight, and all diabetes has to do is have one good day.

“As diabetics, we walk the fine line between secretly believing we're immortal and knowing that we've got this expiration date. In a way, we have more conscious control over what our bodies are doing than anyone else; in another way, we have much less, our bodies being essentially out of control with so many factors to deal with.  Buffy's super strong and quick, but she has to deal with all sorts of violently unpredictable outside forces that most people don't.” 

Another, “Latitude and Longitude,” takes an episode of the West Wing, where Sam has his worldview destroyed, and explores how things you thought were solid, like latitude and longitude, can turn into constantly moving goalposts.

 “Now, we place great trust in our devices. We try to believe that they will never fail us. We place our lives in the hands of plastic and metal and batteries and medical research, sure that they will work; sure that they will always deliver some sort of base measure of performance. Like latitude and longitude. We know this isn't true. Plastic fails. Metal fails. Batteries are spent. People get sick. People die. We take a lot on faith. Like latitude and longitude, which are invisible.” 

Finally, my favourite kids’ book, The Phantom Tollbooth, lends itself perfectly to the emotional journey of diabetes.

 D-Blog Week

We all need a little impetus to get writing, and D-Blog Week is so amazing for providing that every year. Some of my favourite D-Blog Week posts, to round out the list:
 “Diabetes Hero”: All about the people who mean a lot to me. It was nice to thank everyone, and to hope for the future.

 "Everybody who has touched my diabetic life is my diabetes hero. It's trite but it's true. Everybody with diabetes is my diabetes hero. If you asked someone to say or draw the first thing that comes to mind when you say "hero," it would probably be a fighter of some kind. A war hero; a soldier. A firefighter. And that's what we all are. We fight every day against odds that sometimes seem insurmountable; in a way, they are. The odds are literally insurmountable. We can't win. The best we can do is try, and see another day the best we can. Bravery is not the absence of fear; it's having the courage to fight in spite of that fear. The definition of hero seems to be a person who fights even when he or she knows he or she can't win, because it's right. That's what we do."

 “Mantras and More” won a couple of D-blog awards, and I’m so happy it resonated with people.


 Each drop of blood is a drop in the ocean
Each high and low is a wave in the sea
Each day you live represents forward motion
Each day you make it the best it can be. 

"Change The World (Sweat The Small Stuff)” was about the things that seem small, but really mean a lot. The post meant a lot to me.

 “The refrain is constantly there. The small stuff is the heartbeat pumping the lifeblood of diabetes: the fear inherent in every move we make. The small stuff is the big stuff. The big stuff is the small stuff. We are made of atoms, and capillaries, and the tiniest prickles on the skin. When we complain about the small stuff, we are saying: we are here. We are saying: we are scared. We are saying: listen.” 

Hope this wasn’t too self-indulgent! It’s fun to walk down memory lane.

Diabetes Blog Week 2015 Day One: I Can.

Welcome to Diabetes Blog Week 2015! Today's topic: I Can.

In the UK, there was a diabetes blog theme of "I can...”  that participants found wonderfully empowering.  So lets kick things off this year by looking at the positive side of our lives with diabetes.  What have you or your loved one accomplished, despite having diabetes, that you weren't sure you could?  Or what have you done that you've been particularly proud of?  Or what good thing has diabetes brought into your life?  (Thank you to the anonymous person who submitted this topic suggestion.)

"You don't think I can love you/But I can, and I will, and I do" -Barenaked Ladies

These lyrics are the first thing that popped into my head when I read this prompt. I thought they were off-topic, honestly. I parody songs often (it's a sickness, really), so I'm no stranger to songs stuck in my head, ready for a twist. Taken out of context as they are, the lyrics whirled insistently through my brain.

Diabetes, you don't think I can love you/But I can, and I will, and I do.

Do I love diabetes?

Do I love it for the right reasons?

Anybody who has known me for more than two seconds knows that I am fiercely proud of my academic achievements. I roar as a Princeton Tiger and as a Columbia Lion. I've always graduated with high or highest honours from wherever I was enrolled. I've done it while often feeling unimaginably terrible.

Diabetes, you don't think I can…But I can, and I will, and I do.

I've only rescheduled one test due to diabetes. I very, very rarely called in sick to work while I was in school. The one time I remember doing so, I was supposed to go into scene shop, lift heavy wooden sets and possibly use power tools, and because my blood sugar was so low I could barely walk under my own steam, I figured it wasn't safe for anyone. The only time I took a paper extension, I was real people sick with walking pneumonia, and I didn't ask for it - I looked so bad that my professor unilaterally declared that I was taking one.

Diabetes, you don't think I can love you/But I can, and I will, and I do.

In a way, I think diabetes made me tough. Sometimes, I actually enjoyed it. One perverse thing about university culture (and I think it's pervasive in our culture in general, with the higher-powered professions and schools most heavily invested) is that we like to brag about our hardship. You got four hours of sleep? Child's play. I'm running on three. You wrote fifty pages this week? I wrote a hundred. You did it with a cold? I did it with bronchitis…and with diabetes. Hard to trump. Diabetes can make you "special" in identity, or in hardship; sometimes for the right reasons, sometimes for the wrong ones. Shakespeare, in his play Antony and Cleopatra, differentiated between Roman and Egyptian cultures. He billed the Egyptians as being in touch with both nature and their own senses, ready with passion, love, and a sense of enjoyment, from which they drew their power. Romans were in love, instead, not with themselves and their world, but with a sense of order and duty. How loyal could you be? How much could you work? How much could you sacrifice? Shakespeare's Romans were in love with hardship.

One of the things about "I can" is that many of us, as people with diabetes, feel we have something to prove. We want to show that we can do just as much as anyone else. This can be a great motivator, driving us toward success. It can also turn a person into a hardship-loving, hard-driving, Shakespearian Roman.

I'm doing this without an insulin pump.

I'm doing this without checking my blood sugar regularly.

I'm doing this without letting anyone in.

I'm doing this without a support network.

I am the best Roman. I am a CENTURION.

I can, and I will, and I do.

When I achieve something, or strive to do so, I am slowly learning to ask myself whether it is something I want to do, or something I feel I have to do, because it's so difficult. Do I have to play the game on the most difficult setting? Do I have to fight this thing at all turns?

Paradoxically, asking myself this question is one of the hardest things I've ever had to do.

Less paradoxically, it's been one of the most rewarding ones.

It may be a mistake to talk about loving diabetes, because, if I think about it a little more, that's just a slipcover for the heart of this thing. The lyrics don't even refer to diabetes. They really refer to me. How I learned to stop worrying and love diabetes is really how I'm learning to stop loving hardship and to love me.

Five years ago (in fact, I finished graduate school five years, less one week, ago), I found myself out of school for the first time, and I was unemployed. I felt rudderless; I had my achievements, but right now, I had no work to be doing. It was a perfect time to discover a support network in the Diabetes Social Media Advocacy network. Talking to dozens of other people from around the world, I found the hardship lessened, and that it wasn't a weakness; it was a strength. The Roman in me was always primed for war. The other side realized that making peace with the enemy takes more cunning than going in, guns a-blazing. Not only that, it's actually harder, but in a good way. June Callwood, in her wonderful article "Forgiveness" that she wrote at the end of a brilliant life, quotes a source as saying, "anyone who thinks forgiveness is for wimps hasn't tried it." Callwood then writes, as hard as forgiveness is, "it is worth the candle." Letting myself feel better and have the space to heal was a way of forgiving diabetes, and loving myself. Giving myself more tools to do better (an insulin pump, regular testing) is a way of loving myself. Going to the gym now, running up to 10K at a time, something I would have laughed at the concept of me doing - yes, another gift to myself.

I am still guilty of "being tough." When I smashed my dominant arm's elbow into two pieces a couple of years ago, I only took one day off work after the surgery to put the pieces back together, and the only reason I took that day off was because I woke up and I physically could not move. When I brag about that - as I have done - I realize I'm being a Roman again.

But I'm getting in touch with Egypt.

Can I promise I'll never fall back into those ways? Probably not. I still need some of my drive. I'm still overcommitted, but I'm mostly overcommitted to the things I love, and in which I can take real pride, not just hardship-pride. I love being a professor. I love having written a course that is now required for every student taking a BA program at my school. I'm trying, however, to achieve all of this with myself, rather than against myself. To make the hard choices to make things a little easier.

I can, and I will, and I do.

At Seventeen (Mice, Mice, Baby)

Today marks a couple of milestones. One of my very dearest friends turns 30 (Hi, Chris! I love you!) and my diabetes diagnosis turns 17 (two inexorably linked events in my head; as I've said before, the first day of diabetes + birthday cake is really effing confusing for a twelve-year-old).

I was going to say hi, diabetes diagnosis, I hate you. In some ways (many ways) I do hate diabetes as much or even more than I always have. It's pretty awful. The roller coaster ride, the wheel of fortune, the tower of terror...I could just keep naming rides and metaphors, but you get the picture. Diabetes is unpredictable and wild. It's just like a seventeen-year-old (or, as I imagine a wild seventeen-year-old to be; diabetes rebellion aside, my teenage wildness looked a lot like mildness).

My D is seventeen
I've had some very bad years
I've had some much better years
They happened very recently
I found the D-O-C
Much lower A1c's
My D is seventeen

On the other hand, my D has been the biggest learning experience of my life, and I've always said that I love learning! My D has made me a ton of friends, and I love friends! My D has given me so much to write about, and I love writing! It's funny; if a genie materialized before me right now and told me he could cure me, I would say yes in an instant, but if he said "I can make it so you never had diabetes in the first place," I don't know what I would say. It's made me a better, more controlled, more compassionate person. In some ways, it's made me special. I still think it had a hand in getting me into my first-choice university, which was an incredible experience and has affected my life in immeasurably positive ways.

I learned the truth at seventeen
That while D sucks, you have the means
To only suffer, or to smile
We're only on this Earth a while

In any case, today I choose to smile. Here is a cupcake my sweetheart gave me for my Diaversary (Bailey's frosting and chocolate cake). He's a guy who's in it in sickness, in health, and in cupcakes! I love him very much.

When I was newly diagnosed, I was told that there would likely be a cure in five years. I know most of us in the same boat could finish that sentence. I really held on to that idea. In a way, my first five years (until I actually turned seventeen) of diabetes were me in denial, trying to mark time until the cure was found before I went off to university. In a way, the healthiest (though most depressing) thing I've ever done is to basically "Let It Go" - let go of a hope for a cure in my lifetime. I'm not going to say I wouldn't welcome it, but I want it to be a nice surprise, not a "what took you so long?" To that end, I know we're all sick of seeing studies that report "A CURE!" - in mice only. As a Diaversary present to myself and you, I present my most elaborate parody ever. Please put on Vanilla Ice's seminal tune, "Ice, Ice, Baby," and rap: "Mice, Mice, Baby." I love you guys! I don't love fake cures.

Yo, D-O-C, let’s kick it!

Mice, mice, baby, mice, mice, baby
All right, stop. Commiserate and listen
I know these scientists are full of ambition
Ideas grab a hold of them tightly
One experiment and they’re on the nightly
News – it’s a cure? Yo, we don’t know
Though I know we want to think so
It seems so extreme, a dream too true to handle,
But please, remember to breathe, it’s a scandal

Calm down. Don’t rush the lab rat room
It’s hard to think when some hope pierces the gloom
But deadly, to wish instead of taking care of me
Less than five years, who cares about A1c?
Hate D or leave D, you still better play
Don’t put off to tomorrow the tests of today
Diabetes is a problem and maybe they’ll solve it
But this cure won’t do much unless they can evolve it

MICE, MICE, baby
They cured some MICE, MICE, baby
They cured some MICE, MICE, baby
Not humans, mice, mice, baby

Now that conclusions are jumping
With the hype kicked in, the media are pumping
Make a quick point, they anoint, but they’re fakin’
It’s as much of a cure as a diet of bacon
And we’re equally burned, ‘cause they show us a symbol
Of progress when evidence isn’t so nimble
And a high horse is ridden by those in the know
Breaking the news to the newbs caught in the show
It’s just “cure” v. 5.0
How much smoke can a headline blow?
If I gave this cure a try, then my meter would say HI
Not a chance, I just have to keep getting by
Diabetes will pursue me and I can’t stop
A mouse won’t live five years, me neither, I’ll drop
Then I’ll be dead.

Yo – so you know what, buddy? I appreciate the studies.
I’m glad the tiny beasties no longer have the ‘betes
No more sad squeaky sugar-filled mousy entreaties
But my body’s not a mouse’s, a mouse’s isn’t mine
And when is the day when they tell me I’M fine?
I feel like a chump with my ear to the wall
Running after a cure like a mouse stuck in a ball
Platitudes ring out like a bell
It’s hell, just a shell, well, don’t fall under the spell
Falling hopes are dashed real fast
Optimistic’s just sadistic and I’m running out of gas
My bumper needs a jumper ‘cause the deck seems stacked
I’m just trying to survive with a pancreas that’s cracked
D-Police on the scene, you know what I mean
They pass judgment, act like I’m a mean sugar fiend
Diabetes is a problem, but that doesn’t solve it
And this cure won’t do much unless they evolve it

MICE, MICE, baby
They cured some MICE, MICE, baby
They cured some MICE, MICE, baby
Not humans, mice, mice, baby

Take heed, because I’m a high glucose poet
If this applies to me, well, then why don’t you show it?
It’s the D-O-C’s town, and we’re going to make a sound
Enough to shake and kick holes in the ground
‘Cause there’s fast, safe and cheap, or there’s slow, drag, and kill
My BG is always changing but advances seem so still
Strip safety reform, that’s a hell of a concept
Not sexy, but fixing “the D got her as she slept”
The closed loop system, with low suspend will aid
This ninja-like feeling of life lived on a razor blade
So sharp, other people say “damn,
How you measure out a life in shots and milligrams?”
I keep my composure with goals, some strict, some loose
If I’m high, then I’ll cry, if I’m low, I’ll drink juice
Diabetes is MY problem, and I’m going to solve it
With my friends worldwide, we’re going to evolve it

NOT mice, mice, baby
They cured some mice, mice, baby
That must be nice, nice, baby
But we’re not mice, mice, baby
No more advice, vice baby
‘Cause there’s a price, price, baby
We’re STILL not mice, mice, baby!
Not quiet mice, mice baby

Yo, man, let’s get out of here! Word to your support network!

-Ilana

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!

-Ilana