Redefining Normalcy

When I was diagnosed, I knew as little as an 11-year-old girl can possibly know about diabetes. My mom obviously knew more, as she'd at least recognized the symptoms before it got to the "throwing up on your death bed" stage. Needless to say, the three days I was in the hospital were a huge learning curve. Needles (oh so many needles). Science (anatomy and physiology before I'd taken Biology or Chemistry. woo). Technology (so I just put the blood into this bit of plastic and the machine tells me how much sugar is in it? ....wat?). Emotions (they seriously need to cover this better).

My parents decided to kind of split up the duties, make everything easier. I use the term easy loosely, obviously. Dad took over the numbers in a very engineering fashion. He figured out how much insulin I needed, recorded my blood sugars, dealt with the doctors. My mom took over nutrition, counting carbs and planning meals.

The one thing that was most important to my parents, however, was to maintain normalcy. They believed whole-heartedly that the best way to handle this was to bulldoze over it and laugh in its face. This was great for me, because I hardly felt like I'd really been diagnosed with a disease. In fact, the extra attention was kind of cool.

And then that Christmas I got a pity laptop. All was well.

Looking back, though, I kind of wish we hadn't pretended that everything was still normal, that nothing had really changed. While emotionally it was certainly a lot easier, I think I still try to convince myself that I'm normal.

"No, I can definitely have three bagels in the morning. That's fine."

"You're having a CUPCAKE PARTY? Yes, please."

"You guys are going to go play soccer for 6 hours? Sure, let me just leave my juice and tester in my room, far away from the field."

I know us diabetics say we can do everything anyone else can do. And that's true. But I always forget the asterisk: I can do everything, but it's sure as hell going to be harder. We say we can have cake at the birthday party, that we can play in all these varsity sports, that we can go abroad and travel. We can. But not without giving ourselves a lot of insulin and hoping it will be enough, or profusely testing out blood sugars with a gallon of juice on hand, or packing an entirely separate suit case for all of our supplies.

I think my main struggles with diabetes are tied to my inherent belief that I can do all these things. I really think I can eat whatever I want.

I've come to the decision that yes, in theory, I can. But practically I know the bagel is going to make my blood sugar 300 later in the day no matter if I give myself 3 units or 30. My parents tried so hard to let me believe that nothing can hold me back, and they were right. But it's taken me a long time to learn the responsibility that comes along with wanting to do everything.

I'm not "normal." I'm just not. Fact is, when I eat food, unlike everyone else, I give myself insulin. When I run, I carry a juice with me. Every three days, I do an infusion set change. Ignoring these things and pretending they don't change anything has been hurtful to my health. I'm different. I'm diabetic. And so help me god, I just can't eat bagels, no matter what my stomach thinks.

Wish-List Wednesday!

Things I've found on the internet that I need in my life.

This shirt:

Because there are very few things more awesome than making fun of my defunct Pancreas. (Thanks, Mrs. Krones!)

This sweatshirt:

If you don't absolutely LOVE Dinosaur Comics, then we can't be friends.

This candy:

Yes, it's candy. Yes, it's awesome. I haven't had breakfast yet so it makes me super hungry. And have a strong desire to be fashionable.

Dia-BEAT-this (lol)

When I tell someone for the first time I have diabetes, I try to be understanding. There's the initial shock, the processing as the person tries to recall everything they know about diabetes, and the momentary panic when they realize all of their information comes from nightly news stories about obesity and Wilford Brimley commercials. I'd like to inform everybody that that's OKAY. The fact that you don't know anything means you're life has not been afflicted in any way, and that's a good thing.

I don't mind when you ask stupid questions. I don't care if you mix up type 1 and type 2. And I won't get mad if you confuse my insulin pump with a beeper.

I don't care because I find myself in the same situation all the time. A friend may mention that a sibling has autism, or that their parent suffers from epilepsy, or that they had cancer when they were younger. I mean, really, if you can't relate, what can you possibly say?

What I find interesting is that I get two very different reactions.

I get the understandable, "Oh, that sucks." Naturally. This is a DISEASE we're talking about.

But interestingly, people will also say "Oh, that's cool." And not in a dismissive "I have nothing else to say," kind of way, but in an "I actually find this interesting and it's cool that your pancreas doesn't work" sort of way.

You'd think this is offensive, but it's not! It's weird people say this, and kind of funny in an awkward sort of way, but honestly it IS a little cool. And I find I want to say the same thing to others when in this position. Don't get me wrong, it also sucks, but I totally get the sentiment behind what they're saying. Especially at an engineering school, where I get this a lot.

Every day, I get to play around with thousands of dollars worth of technology. I keep up with the research and the advancements going on in the field. I'm experimenting on myself to perfect my treatment. I've basically been a scientist since I was 11-years-old. And yes, that's cool.

Do I suggest you tell diabetics it's cool they have diabetes? No. You will definitely get smacked. And maybe make somebody cry. Not every diabetic has a similar outlook as I do. But I get where you're coming from. Even though they suck, diseases are interesting. My diabetes makes me knowledgeable on a personal, in-depth level of a couple sciences. My diabetes gives me an interesting perspective on different areas of life, like stem cell research and health care. I assume that most diseases have a similar affect on other people, and I want to know how! I'm dying to understand what it's like to be you, and I'm dying to explain what it's like to be me. The world will surely benefit from our exchange of information.

And THAT is definitely cool.

I understand people's desire for privacy, and that it's really nobody else's business what their disease is like. But I would much rather have someone ask me questions and learn more than to either 1. pretend I didn't just drop this on you, because that's awkward or 2. pretend you DO know everything about diabetes.

Oh my god. Please don't get me started on the second one.

When you are ignorant, that's fine. Just be aware of it. Things to watch out for:

1. Seeing it on Oprah does NOT make you educated.

2. The news was almost certainly talking about type 2.

3. Your science class did not even sort of give you the big picture. Fantastic, you know what insulin is. You're still ignorant to the huge web of information that is diabetes.

4. Being a medical professional, or the relative of a medical professional, does not make you knowledgeable of diabetes. I assure you that myself and anyone I've ever met don't fit the textbook definition. Not even close.

There's really no good way to have that initial conversation, because everybody will respond differently. All I can tell you is, when you see me, always know you can feel free to ask me anything. Less ignorance is never a bad thing.