Friday, August 31, 2012

Buffy the Diabetes Slayer

For comedy's sake, dressed as Vampire Willow
In my apparent quest to compare diabetes to pop culture, I suppose I always knew I would reach Buffy the Vampire Slayer eventually. My sentimental favourite show of all time, it aired at the perfect time in my life (middle through high school) to become a part of my growing-up process. I could go on and on about the show, but I won't. Suffice it to say that Buffy is the Slayer, sworn to do battle with the vampires (with some notable exceptions) and the occasional demon; knowing that one day she will lose and be replaced.  (This is, by the way, the only instance where I will compare myself to Buffy; everyone who knows me will tell you I'm pretty much a [pre-Tara] Willow, right down to the identical SAT scores.)

In the Broadway musical Title of Show, a vampire is defined as something that saps your creative ability, such as self-doubt, or negative people ("Die, Vampire, Die!")  In Buffy, vampires are a metaphor for a host of issues we all face as we grow up. In my life, diabetes is the vampire. I'm not just saying that because it sucks.  Or because it sucks a lot of blood out of me on a daily basis, but that is a fair comparison; because blood is a daily thing for me and for Buffy, it has a tendency to remind us of our bodies, being alive, and the importance of blood to both of those things. As Spike the vampire said in "The Gift," "Blood is life, lack-brain. Why do you think we eat it? It's what keeps you going. Makes you warm. Makes you hard. Makes you other than dead." It's a bizarre phenomenon when your own blood becomes the enemy, with too much or too little glucose spelling disaster.

I've been thinking about this because, in the process of introducing the fiance to the series, we recently watched the episode "Fool For Love." (Warning: spoilers for a couple of things in that episode lie ahead.) One of my favourites, its genesis lies in Buffy confronting her own mortality. She's doing better than ever in the fight, gets a bit cocky, and then gets staked with her own stake, by "just" a vampire: 

So tell me about the bad guy- or guys. What do you think they were?


How many?


Riley is surprised.

So... what? He was like a super-vampire or something?

No, he was the regular kind. He just beat me.

That ever happen before?

I'm in the best physical shape of my life. I mean, if you're asking how it happened, I don't-

 Buffy desperately wants to find out what went wrong and how she can avoid this mistake from ever happening again. She obsessively scours the Watcher Diaries for answers that she can use, but finds nothing:

You didn't lose last night, Buffy. You just-

Got really close. I slipped up, Giles. I've been training harder than ever and still I... (beat) And there's nothing in any of these books to help me understand why. I mean... look, I realize that every Slayer comes with an expiration mark on the package. But I want mine to be a long time from now. Like a Cheeto. If there were just a few good descriptions of what took out the other Slayers, maybe it would help me to understand my mistake, to keep it from happening again.

Eventually, Buffy turns to Spike for answers. Though we find out how he's killed other Slayers (and a great deal of his origin story), we find out that it boils down to a couple of things. One, that every Slayer has a bit of a death wish, and without ties to the world, it might take over. And the other?

[...]we just keep coming. But you can kill a hundred, a thousand, a thousand thousand and the enemies of Hell besides and all we need is for one of us- just one- sooner or later to have the thing we're all hoping for.

And that would be what?

Spike leans in close and whispers in her ear.

One... good... day.

And that's the thing about being a Type 1 diabetic. You fight little battles every day that keep coming up, over and over again.  You may be in the best shape of your life, a line of Buffy's that resonated with me because my latest A1c was better than ever. But there are complications, and things unaccounted for. There are reactions, and, most terrifying, there are lows.

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.

Whenever I have a frightening day with diabetes, particularly with a bad low, my thought process becomes like Buffy's. What specific thing did I do wrong? How could I have countered that move? How can I stop it from happening again, and become the Cheeto with the long-off expiration date?  It's even worse when I see news stories about Type 1s my age, slightly older, or younger than me, dying in their sleep. These tend to get circulated around the Diabetes Online Community in solidarity, because we're all upset. These become my Watcher Diaries, where I scan them trying to figure out how I'm different somehow. What mistake did this poor kid make? Was this guy a really hard partier? Were there drugs involved? Another condition? Did she stop taking insulin? To understand my impulse, there's no blame involved, just a psychological reaction. Most of the time, there is no specific "mistake" - I'm just like them. Even if there was a "mistake," I've made them all over the years, and I'm still here. And that's not because I'm a special Slayer. There is no "why." All of those people should be here still. And they're not.

Because diabetes slipped in and had One...Good...Day.

That's all diabetes needs to be the last vampire. One good day. The element of chance is a heartbreaker. What Buffy, and what I have to learn, is to see being the Slayer as both a quest with a long haul (the mission, the season-long arc) and with small, individual battles and episodes.

"The thing about the dance is, you never get to stop," says Spike. Diabetes is that dance. It's the Big Bad. In a way, it's a similar calling; not something you'd ever choose, but something that you have a duty to deal with, and can become all the stronger for. And you get certain "superpowers," like being bionic. You perform "spells" like Willow, except the magic is insulin, exercise, or sugar. (And sometimes, like Willow's spells, your combinations go awry.) The only difference is that, unlike the Slayer (for the most part, without including any more series spoilers), there doesn't have to be the sense of being totally alone, "one girl in all the world," even if it does feel like that sometimes.  In our community, everyone's a Watcher and a Slayer, providing some much-needed ties to the world. Plus, I've got my own Scoobies to keep me company. I wonder if I should start calling my lancing device Mr. Pointy?

In any case, it's a worthwhile fight.

Grr, Argh....

(All "Buffy" quotations from Fool For Love credited to Douglas Petrie; quotation from The Gift credited to Joss Whedon

Wednesday, August 29, 2012

Science Reporting: BE AFRAID. Be very afraid.

People with diabetes have a tendency to live a life tinged with anxiety. Why shouldn't we? We are at higher risk for pretty much every awful thing that can happen to the human body. Problems can accrue over many years, or one big mistake can kill us. Anxiety also occurs from the day-to-day stress of managing a complicated and unpredictable condition. But the third type of anxiety comes from other people. First, there's the subset of people who think we brought this condition on ourselves. It's not even as simple as the Type 1 vs. Type 2 debate (and heaven help you if you're a T2; it's so much worse). Even as a T1, more and more news articles come out all the time that come with the underlying message that I had an autoimmune reaction because I was doing things I wasn't supposed to (drinking milk...handling plastics...fooling around with certain brands of cosmetics as a child).

So, there's that. But there's also the subset of people who, now that we have diabetes, is convinced that UR DOIN IT RONG. (Or, in regular English, "you're doing it wrong.") This can involve, but is not confined to, what we eat, what supplements we might or might not take, what medications we may or may not be on, how many times we test, what range we feel comfortable being in, whether we do multiple daily injections or the pump, how much we do or do not exercise, and more. We make so many decisions every day that are implicitly or explicitly questioned by others. Anxiety.

And now we're being told that we're doing anxiety wrong - that is, we're not worrying enough, and we're not worrying about the right things.

"Diabetics worry about the wrong risks, Hamilton health researcher finds," says a new study.

"Canadians with diabetes tend to underestimate the life-threatening impact of the disease, a national study has found. They worry about the wrong health risks. Diabetics’ biggest concerns should be kidney and heart complications. Instead, they wrongly fear blindness, amputation or erectile dysfunction, the survey found."  (The study is, of course, sponsored by the Kidney Foundation of Canada and two pharmaceutical companies that I'd wager make drugs that support kidney health.)

First, in the picture, it looks like that insulin pen doesn't have a cartridge in it, which is actually vaguely disturbing to me. But that's beside the point.

On one hand, I appreciate the intent of the study - that health care providers should be working with people with diabetes to find strategies that will best support kidney and heart health. That is very important, and if patients don't know what appointments to make or precautions to take, it makes sense to do the study and apply it to the conversation between HCP and patient. But the framing of this article bothers me. It's not framed, "how can doctors better communicate what patients can do to help their heart and kidney health?" It's "look at those stupid diabetics, all scared about superficial things? Why aren't they more scared? About the things that REALLY matter?" Frame it as an education issue rather than an ignorance issue.

Apparently, worrying about silly little things like blindness, amputation, and inability to function sexually is just so uninformed. It's not what the cool kids are worrying about:

"This misunderstanding is 'quite concerning,' said Dr. Richard Tytus, a family physician in Hamilton and professor at McMaster University. 'The reality is that you won't need to worry about being blind if your heart stops beating or your kidneys shut down.'"

Har, har! That's a good one! I mean, really. This is the tone the article is taking.

If there's one thing that I know about diabetes, it's that people with diabetes are quite adept at worrying about many things at the same time. We have to. But sometimes telling us to worry about everything at the same time causes burnout.  If there's one thing I think WE HAVE EARNED, it is the privilege to worry about whatever complications we darn well want to worry about, even if they are "insignificant" things like losing our sight or feet. (There are certainly enough people without diabetes who, similarly "misinformed," love to tell us horror stories about how these things happened to Great Aunt Martha.)

Worrying about heart health is important insofar as it impacts some of the precautions, and potentially medications, that you take. The heart and kidneys should absolutely be part of the regular conversation with a health care practitioner. But, in reality, when it comes to the general process of taking care of oneself as a person with diabetes, it doesn't matter what complication we fear, as long as we are motivated to take care of ourselves. In fact, fear is kind of an awful motivator, even if it is effective.

It's nice to focus on positive motivators; several psychological studies have shown they tend to work better. When I exercise, weight loss is my motivator, whether I need to lose weight or not. I exercise, and get the blood glucose, mood, and energy benefits, whether or not they are my main motivators. I'm not sure anyone says, "oh, I'm only worried that I'm going to go blind, so I'm not going to take care of myself because that's not a big deal. If I were worried about my kidneys, I would do a lot better." (After all, the article doesn't say that these other complications aren't problems, just that we won't have to worry about them if we're dead.) The only thing we have to fear is fear itself. And a whole bunch of complications.

Complete apathy is a problem, but it's also nothing we can solve by blaming the patient. Most of the things we do every day impact every part of us. If there's one thing that might help, it might be ceasing to think of ourselves as a collection of unrelated parts, eye, leg, kidney, heart. Instead, why not think of the whole? One of the problems many people with diabetes find in their health care is being treated as a series of problematic parts, rather than a complete person where everything affects everything else. This often leads to the mental part of diabetes being ignored, which is a shame, as I'm pretty sure it's the biggest predictor of success with all the other parts. This study, or at least the reporting of it, focuses on the "should" - what we should be thinking - and not the "why:" why does this mental disconnect occur, and is it a symptom of a larger problem?

And, after all, isn't too much worrying bad for the heart?


EDIT: Here, for comparison's sake, is a MUCH better way of reporting the same study, with quotations from the same doctor that are much more complete and less dismissive. What a difference!

Sunday, August 19, 2012

The Insulin Pump Cutie Mark

I probably shouldn't admit this, but I've seen every episode of "My Little Pony: Friendship Is Magic." (I blame a certain bell-ringing friend of mine for this development.) It's actually a lovely little show, full of strong female characters and gentle humour. For amusement's sake, have a couple of pictures of me dressed as one of the lead characters, Twilight Sparkle (who, like me, is a crazed perfectionist who loves school and books), ringing handbells at a My Little Pony-themed burlesque show (don't ask).

My hair doesn't normally look like this. Maybe it should.
Twilight Sparkle, or Sprinkles the DOC Unicorn?

In My Little Pony, one of the major themes is that of the Cutie Mark. A play on "beauty mark," it's found on the flank where a brand would normally be. In the world of the show, it symbolizes some great truth about who you are; something about your personality or talent, what you were "born to do." Having a cutie mark magically appear means you've come of age, a sort of unpredictable pony Bat Mitzvah where your vocation is revealed.

Where am I going with this? Good question.

Last night I went out with family for a birthday dinner for my mother. As is often the case, I decided to wear a dress. If any of you are pump-wearing ladies, you know the dilemma. Dress. No pockets. You want a slim, unbroken line. Where do you put it? One of the reasons I chose the Animas Ping pump was because it had a remote bolusing feature, so I could give myself insulin while keeping the pump craftily hidden in the back of my dresses. It generally finds itself safely under layers of undergarments. The last thing you want people to see when you're trying to look pretty is a glaring reminder of your physical defects.

After we got home, I was in the process of putting on my PJs when I noticed the result of the day's pump-stashery: a perfect impression of my insulin pump. (No pictures; I'd like to keep this blog relatively PG.) An insulin pump cutie mark, if you will.

If I were going to pick a cutie mark for myself, it probably wouldn't be an insulin pump. It would be comedy and tragedy masks, for my love of theatre. A pen, for my love of writing. Maybe a book, or something to do with teaching. But, as that silly little cartoon shows us, you don't always pick the things that define you. Sometimes they pick themselves.

There's a trio of small ponies in the show that are always trying to get their cutie marks, and finding that there's no way to force it. You may think you're good at something, but you may not have realized your hidden talent.

Somewhat coincidentally, I was diagnosed with diabetes the same year I had by Bat Mitzvah, or became an adult according to my heritage. It was a nasty welcome to "adulthood." But, of course, as mature as I was at the time, I wasn't really ready to be an adult. For years and years thereafter, I certainly wasn't ready to be an adult about my diabetes, and the numbers reflect this. After I finished grad school, I'd like to think I symbolically moved into the "Adult" world. In conjunction with this, I finally accepted that this condition was going to be a part of me forever, shaped up, and got my first insulin pump. What a dramatic difference in my life! The pump symbolizes my acceptance of diabetes, and my willingness to keep working at it, every day of my life. I may not be doing theatre, reading books, writing, teaching every day of my life (though I certainly hope to be). But I will be dealing with D, no matter what. Maybe it's not my talent, but it is my life.

I looked at my insulin pump cutie mark and smiled at how appropriate it really was. Maybe it's time to pitch a new kid's show: My Little Diabetic: Insulin Is Magic.