A Moth to the Flame

Today's prompt: I write about my health because...

When this prompt came up last year, I wrote about the Diabetes Delorean - my time machine I would take back to myself at diagnosis (age 10) so that I could share wisdom about my life with this condition.

And how, barring the development of said time machine, the best I could do was to write about what I've learned and share it with you now. Especially if you need to hear it.

Today though, I want to talk about why I continue to write about diabetes. Surely, with all of these people's blogs and blog carnivals and health social media outlets...surely, we've said it all, right?

How much more can there be to say about diabetes after all? Signs, symptoms, stigma. Diets, doctors, drugs. Blah blah blah.

Here's the thing though.

It's still HERE.

It's still invading our every single meal. Every single intimate encounter with a loved one. Every time I take my kids to the park. Every time I plan a vacation. Every time it claims another life.

Whether its presence farks up my plans or whether I brilliantly managed a day where it didn't, it's still my constant companion. My abusive other spouse. My annoying coworker. My unruly third kid.

*whines because you don't understand*

It's HEEEERE.

And when I (and others) write about it, we remind one another that we are not alone. We remind you that we work really hard to be this healthy. We remind ourselves how strong we are.

When diabetes snuffs out a young light too soon, we light virtual blue candles on our Facebook profiles.

We stand together and stare down this unfair, inevitably unfriendly beast...before tucking it back into bed with our kids, zipping it back into our testing kits, slipping it back in our pockets.

Whether we light a candle in memory, in honor, in hopefulness, or in unity, each contribution is another voice in the chorus. And I'd like to think each voice matters. Even when my own voice seems small.

Matthew Arnold once said of Percy Shelley, one of my favorite poets,

"In poetry, no less than in life, he is 'a beautiful and ineffectual angel, beating in the void his luminous wings in vain'."

That quote has stuck with me since the day I scribbled it into a lecture notebook when I was 21.

I saw in myself some kind of ineffectual bright angel.

Self-important. Loudly sharing my delicious-sounding words in the hopes that they mattered. Hoping for incandescence, in need of reflection.

To each of you, I say share your perspective. Flap your wings. Shine on.

Kryptonite

Today's Prompt: Superpower Day. If you had a superpower – what would it be? How would you use it?

I already have superpowers. I don't know what you're talking about with this 'what if' stuff.

For over 21 years now, on a daily basis, I function without a vital organ, requiring me to do its job externally 24hrs a day.

I grew two people in my uterus. And one of them requires superhuman vigilance due to her thrill-seeking love of danger. And jumping.

I can get two babies down for a nap, well-fed, in clean diapers, and type this blog post in my iPhone Notes app with my thumb. My THUMB, I say.

I can rattle off every song title that each of my students ever sang on a recital for me for the last decade.

So what if I can't remember that I have diabetes sometimes?

Huh?

Yeah, okay, so there are distinct points of failure. Cracks in the dam. You know...balls unjuggled.

I can't tell you how often in the last two weeks I've forgotten to eat or take my insulin when I do eat.

Disclaimer: Yes, I may eat anything I like as a person with type 1, if I account for it.

But I'm thinking of firing my accountant.

On Friday, I hosted a gathering of mommy friends at my house. Someone brought cake. I had some. Okay, I had at least 3 pieces. At least.

My supply kit with my pump PDM/meter and strips was in the other room. At no point did any neurons fire and say, 'hey, idiot, bolus some insulin for that carbfest.'

When the last friend left and I had two sleeping babies melted across my lap, it hit me what I had overlooked. I tested.

432.

Seriously?

I've been doing this for over two thirds of my life. I rarely see 200s and 300s these days. And then this?

Dexcom had been too far out of range to call me out and needed to be calibrated. I cringed as I dialed all the way up to 432. It took forever. A walk of shame with arrow keys.

So why does this happen? Am I a bad diabetic? Was I trying to get away from my diabetes for a day? Is cake my kryptonite and I'm just weak?

No. And don't you dare judge me - or any of us.

I'm human. I was distracted. I had babies and houseguests and diapers to change. Interesting conversations going on with interesting people.

It happens. To all of us.

It happens because this disease is f-ing hard and f-ing relentless. You can't let it slide out of the forefront of your mind or something like a 432 happens. You don't get a reprieve because you're sleep-deprived with your colicky newborn. You can't just BE for a day.

I wonder if that's how superheroes feel.

Some days I bet it'd be nice to just be Clark Kent. To not have to search the sky for chaos. To look up and just enjoy the stars. Maybe with a slice of cake.

Survival

Today's Prompt: Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

I re-discovered this gem of an image on my iPad photo reel the other day and, like many great quotes, it stopped me in my tracks.

We talk about survival mode a lot, whether it's...

My girlfriends who are overwhelmed, like me, by the needs and idiosyncrasies of their newborn babies...

My friends who, like me, are juggling a challenging health condition like diabetes...

My friends who struggle with depression...

My friends who are struggling financially...

There are times in each of our lives that require being okay with Just. Getting. By.

The TV may be the babysitter, the food may be take-out, the blood sugars may be out of range, the paycheck may be paper thin, but it's enough right now that you're here. It may not be pretty or graceful, but it's adequate.

Where diabetes is concerned, worrying about our ability to control this erratic hailstorm of a disease sends many into a spiral of self-loathing.

I'm not strong enough to do this. I'm not smart enough to figure this out.

Darwin's quote reminds us that change is the only constant. And that we don't have to be strong enough or smart enough. We just have to be able to accept that things change.

I didn't expect to have a newborn who was miserable for the first few weeks of his life. The sleep deprivation at 5am when I just can't stand and bounce anymore - it makes me feel weak. The quizzing from doctors about just how much spitting up there is and do I want to proceed with this treatment strategy or that one - it makes me feel ill-prepared.

But I don't have to have Herculean strength and I don't have to have any coherent answers. I just have to love him and cuddle him, try different treatment routes, and accept that, whatever it is, it will get better as he navigates through the tricky newborn "fourth trimester." I have never doubted that this stage will pass. Even with, and in spite of, everything I may try to do for him to make him more comfortable now.

I didn't expect to be diagnosed with a chronic illness at age 10. Diabetes has always seemed like a challenge to my resolve and my intelligence. It laughs in the face of my problem solving. It bangs on my door when I'm most in need of a break. I've had phases where I've given up because it's just too exhausting to pretend I can control it.

Life's hurdles like these strike indiscriminately. Regardless of how strong you are. How smart you are. And you absolutely HAVE to be willing to accept that you can do the same thing two days in a row and achieve different results. You HAVE to be able to see the number on the screen and roll with it. Realize you left your insulin at home and roll with it. Have your doctor change all of your treatment strategies and roll with it.

Your survival depends on it.

Message in a Bottle

Today's Prompt: Health Time Capsule. Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?

I've never participated in putting together a time capsule. I remember, as a kid, hanging out at the city fire station where my dad worked and staring quizzically at the plaque on the city's time capsule that was there. I don't remember what date it was set to be opened. Just that I promised my x-year-old self that I would make a point to put it on my calendar so I could see what went in it. I'm pretty sure I missed its unveiling and I'm pretty sure I am okay with that.

That being said, I do wonder what a person with type 1 diabetes will be like in 2112, a hundred years from now. I know there is a large contingent of my community who believe that we will have eradicated the disease by then. The cure has been "five years out" for at least half a century already. I hope they're right. I hope that Diabetes is a story that people tell in a healthier future - a cautionary tale about immune systems gone haywire before the development of miraclefuntimeshappycure.

Either way, I'd want them to be able to touch and feel the implements of management from 2012. The bulky meters, the sharp lancets, the fragile syringe needles, the glass insulin bottles, the ARCHAIC pager-like insulin pumps that are 20 years behind other high tech personal devices. I'd want to give them a good laugh and a sharp poke.

I'd include my blog posts somehow. (Will they still be able to access our version of the web? Or a flash drive?) I'd share my diagnosis story - at once so personal and yet so typical - of symptoms, DKA, coma, education. I'd throw in some pictures of my kids (because they're hella cute).

If I could, I'd find a way to capture and encapsulate the stigma of diabetes in the early 21st century. The sneers, the judgments. I'd want them to know what the media did to hype and blame. Tell how health care practitioners did not educate themselves for the sake of their patients even under the threat of epidemic.

I'd share a sample of my blood sugars, my diet, my day-to-day life. And I'd tell them that I hope they live well. Better than us. That they know more than we did.

Maybe by then someone will have figured out how to accurately bolus for pizza.

Seussing the Savage Breast

I'm under stress,
I must confess,
Our new addition's in distress.

He screams and howls,
Whimpers, scowls,
Throughout all his waking hours.

Not in a swing,

Not in a sling,

He'll not be soothed by anything!

The only balm
To keep him calm
Is nursing, snuggling in my arms.

Day and night,
It's been a fight.
But hopefully now we'll make it right.

Probiotics first,
Reflux meds if worse,
Nursing for his unquenchable thirst.

A full night's rest?
Lots of breast!
We will, we will, we'll pass this test!

My chubby prince
Will no longer wince
And maybe the rest of us will be a little less tense.