12 September 2012

Why We Walk

In the lead up to walk season this year, Miss N and I have had countless discussions about which walk to support this year: JDRF Walk for a Cure featuring Team Notorious for a second year, or the ADA Step Out Walk to Stop Diabetes. Initially, the thought was that we'd walk for both and support one with fundraising efforts, but D had other ideas, and suffice it to say, I'm glad she chose to support the ADA since we completely missed the JDRF walk. That's just the way life is sometimes.

Personally, I like the message of the ADA title. I don't want to walk for some obscure, might be here in five, might be here in fifty years cure. I want to do whatever is necessary to stop diabetes in its tracks here and now - whether that's through a cure or better treatment strategies until a cure can be found. And frankly, that's why we walk. No matter how hard we try to manage her numbers, maintain tight control, and not allow diabetes to interrupt daily life it simply does just that.

This week marks Invisible Illness Awareness Week, and I've seen numerous posts talking about diabetes, particularly type 1 and similar variations (type 1.5, LADA, monogenic, etc.) Fact of the matter is, no matter what type of D you struggle with, it's still invisible until you have to do something about it, like prime unwelcome bubbles out of your tubing, give a quick injection of insulin, test your glucose level, or perform mental gymnastics math before consuming a meal. Miss N pointed out that most illnesses are invisible when you really think about it; Autism, cancer, learning difficulties, lupus, heart disease, traumatic brain injuries, and the list goes on. She's not so sure we need an Invisible Illness Awareness week so much as Be a Basic Human and Practice Acceptance Week. I really can't disagree with that statement.

She doesn't mind the times D is invisible, and honestly has times when she wishes they'd hurry up and invent an invisible meter and  test strips already. The way some kids stare! It's unbelievable, and really it isnt just the kids either. Funny thing is, she's not that private about D. If you just ask she'll tell you what she's doing, why, and be incredibly brief about it. I've watched her talk to toddlers on up to elders in the grocery store. Man, in two minutes flat that girl has the basics out and people asking polite questions. No, it isn't the invisibleness, or even visibleness of D that she minds, it's the stares, the unspoken questions, the misconceptions that lead to negative judgements about her character that bother her. So, yeah, I get it.

Diabetes takes more work than anyone not coping with the illness can ever begin to understand. As a parent of a PWD I sometimes lapse into thinking I've got a good understanding, but I get my reprieves, and people don't judge me... well, at least not as often. Diabetets interferes at the most unbelievable and unexpected moments, and contrary to the lay person's belief - no, we can't control that. We certainly try, but it's about as successful as someone claiming they can control the weather. Okay, maybe it's a bit better than that - somedays. Others? D likes to remind us both that it can cause swings and dips in glucose level without warning, rhyme, or reason.

Miss N takes her work managing D very seriously. She plans ahead for school days, gym, volleyball, basketball or swim practice. She adjusts carb consumption, carb ratios, basal rates, and checks in with me when it gets overwhelming, which at 12 can be fairly often. She texts me everyday at lunch with her BG, insulin dose and how she's delivering it, any time she has a low, and when she wants snacks. Both her friends and family get irritated with her for the lack of spontaneity, the time it takes to plan, count carbs, wait out a low - and they don't even see all the behind the scenes stuff we try to take care of ahead of time. She's a sporty kid who'd never, ever carry a purse unless forced to. Oh, wait - D kinda forces that, too. Her school won't allow kids to carry around any sort of pack, not even a mini one - and she has to carry her meter, strips, juice or fast acting glucose, and a couple snacks. She keeps an extra set of tubing and reservoir handy at school, but out on the town she adds those, extra insulin and glucagon to her purse. Her bag is heavy and barely has room for anything else.

So, when people either fail to see and acknowledge D, see but refuse to ask about it with their voices, or assume it's just not that big a deal... When they assume it's something she brought on herself with diet, or dismiss all the work and interrupted sleep... When they get irritated because D's making them have to hang on a quick sec, that's when she sees the need for a week like this one. It has little to do with invisibility, and everything to do with practicing some understanding, some acceptance, some basic human kindness.

And this is why we walk - because the work never, ever stops. Because people look at her and have no idea how hard and constantly she works to be just like everyone else, to enjoy the same quality of life, or at least strive for that. Because, without your knowing or understanding it, the interrupted hours of sleep to treat a low, manage a high; the missed days and time it takes to play catch up in the face of roller coaster glucose levels, all add up and take their toll. And neither she nor any of the countelss diabetics that we know will stop and feel sorry for themselves or complain. (Sure, they have bad days, but they don't take it out on others and are ever wary of using it as an excuse) No, they pick themselves back up and carry on, hoping ferverntly but ever so quietly for a cure, and between now and then, just a little something to make the work easier, better, safer.

This is why we walk,  and we'd love to have you join our team.

Just click on the image to join our team #@%! Diabetes on October 20th.

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