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.

Almost.

-Ilana

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