It’s National Diabetes Awareness Month (NDMA) and people with diabetes and those who love them (that’s my category) are busy sharing special profile pics, facts of the day, and other information to get the world to understand that diabetes matters, and we need a cure. Now.
But I have a confession to make: I recently realized that as much as I want the world to be aware, I needed a little dose of awareness myself.
It’s not that I don’t get it.
Raising a child from a very young age through adulthood with diabetes on board (18 years and counting of diabetes life for us now), you see it all. You feel it all. You learn it all. But something happens over those years. Our sense of survival kicks in. And by survival, I mean our sense of finding a way to live a strong, healthy emotional life with diabetes on board.
That takes fortitude, patience, and Jedi Mind Tricks. And okay, a wee bit of denial. I’m going to be honest here: while I am a passionate advocate for the cause and while I raise a lot of money for cure research, over the years I fell into a place where I thought, “Gosh, maybe we’re okay.”
We are okay, but we also are not. Which is where NDAM comes in. Because while I work hard to make others aware, I need to be a little more aware myself.
Those of us living a long time with diabetes up close in our lives (either patient or caretaker) are a little bit like a dormant volcano. On the surface, we’re lovely and majestic and really, nothing that would ever hint of something bad. But way, way down below there’s something active and dangerous; something that could blow up any moment. The problem is, we don’t always want folks to know about that lower layer.
For me, it stemmed from wanting my child to grow up strong, brave and living a semi-carefree life, diabetes be damned. To guide her toward this goal, I had to walk the tightrope of understanding the immediacy and concern of the situation while embracing too the need to make it all seem okay. Quite an act.
And one that, over time and as my daughter aged, fooled me into a state of semi-unawareness.
That all changed over the summer because I did the 100-mile JDRF Ride to Cure Diabetes side by side with my daughter. And in those miles, through her struggles, I became newly aware –reborn if you will — in my grasp of just how much this all truly matters.
In those miles, I watched her – up close for the first time in a long while – live her life with diabetes on board. When adrenaline made her blood sugar skyrocket, it was like she was pedaling through mud. She struggled to even go, as she pushed herself to move along a flat road. And you know what? She did it with a smile on her face and while cracking jokes, and while figuring out a dose to bring herself down.
As I watched it, I was floored at just how much I had let this awareness evade me. I’d positive-thought myself into a false world where I somehow, sometimes thought: She’s okay.
But the hard truth is that smile or not – it’s not okay for a person to have to live with a disease that’s constantly assaulting her so that every minute of every day means something different. It’s not okay for a person to have to be so strong and so determined that they can smile through medical moments that would send us mere mortals home sick in a snap. It’s not okay for us to still not have treatments good enough to at least give people with diabetes all a break a few hours a day. It’s just not. Four years ago Jessica Apple, editor of ASweetLife, wrote, “If you want to educate people about diabetes this month, don’t do it by trying to prove that we are equal in all ways. We aren’t equal. Trying to prove that we are the same and putting on our brave faces may, in fact, be our fatal flaw. Wheelchair users don’t get cities to put in curb ramps by pretending they can walk.”
I’ve also become re-aware of all my child and I have done. As we rode along, I’ll admit it, I swelled with pride at how we’d molded an awesome life out of a terrible hand dealt. I teared up at how she – and I – have always responded to the horror of all this by turning it around and making it all okay on the surface. I’m proud of her and I’m proud of me.
So as NDAM nears its close, I ask each of you who is living this life well to take a moment and become newly aware. Don’t ever stop rocking life, but to remember that whether you are the person with diabetes or someone supporting that person, you deserve better.
I won’t cry about it and I’ll never change our outlook but this year, I’m newly aware and ready to take on diabetes until there is none. My volcano, in other words, is smoking again. Let my reconnection with awareness blow the roof of diabetes. For good.
PS No clue where that^ question mark came from . . . It was supposed to be a heart! <3
Isn’t it funny how twenty years in, we roll along thinking we’ve “made it” and every once in a while the reality sneaks up on us? As T1D moms, I think we’ve both done well. Our girls are beyond successful in their chosen fields.–but, oh how much harder they’ve had to work to get there. And how much more we appreciate their successes . . . because we “know”. Thank you for you candor in this piece, Moira. ?
My son was diagnosed with T1D 2 months ago and we are trying to put on a brave face and find our “new normal”. But, I want to scream “It’s not OK!”.
Moira, thank you for giving voice to what many parents must be feeling.
Sorry, for venting…