It’s been forty years since I was diagnosed with diabetes.
I can’t believe that’s a sentence I get to write.
I remember a blogger event I went to over twenty years ago, one of the first events where diabetes bloggers were gathered together to meet one another in real life. People were shaking hands, hugging, introducing themselves first by social media handles — Hi, I’m SixUntilMe! — but then real names, where they lived, and years since diagnosis.
One of the men (one of the Scotts), I think it was Scott Strumello, said that he’d been living with diabetes for over thirty years. And it hit me right in that spot below your heart but above your stomach, the part that clenches when you see a squirrel run across the street in front of your car and you’re afraid to look but can’t slow down in time and you have to hope you see him safely across the street, waving his bushy little tail, when you dare to look in the rearview mirror.
Thirty years. I remember being floored. I hadn’t met someone who’d be living with diabetes that long. That’s a lifetime. At the time, it was my whole lifetime.
Let’s be honest: I’m alive because I’m lucky. I exist because I’m able to reliably access insulin. I could go on about the fact that I have an endocrinologist and a continuous glucose monitor and medical insurance but it’s the insulin. I’d be dead without the exogenous insulin. Nothing is more humbling than realizing the little vials of hormone camped out in the butter compartment of my fridge keep me alive. Not well, not healthy — that’s an extra copay — but actually alive.
Sometimes I wonder why I have anxiety.
Sometimes I wonder why I don’t have more anxiety.
Over the course of my years as a storyteller in the diabetes space, I’ve seen people come into this community. That’s the lovely part, people stumbling into support and being embraced by a network of people who not only bring their own lived experience, but support you while you experience your own iteration of diabetes. It’s wholesome as fuck. To call it magic doesn’t do it enough service.
I saw that magic play out a few weeks ago, at a conference where a newly-diagnosed man was hanging out with another guy who had been diagnosed 30 years earlier. I thought they’d been friends for years.
They met that day.
I’ve also seen people leave the community. Whispers of “what happened” and speculation about what they did do or didn’t do live alongside the grief. And that’s the cruelty of diabetes. We talk about the blame and shame of living with this condition but when it all comes crashing down, scared people whisper behind their hands about what could have been done. Stigma is real, and it’s pervasive because diabetes is relentless and unforgiving.
This is why we need to keep talking, bringing our stories to live where they belong alongside the research data that informs funding, research, and sentiment.
Weird thing is, sharing our stories doesn’t make us better at this disease. Diabetes is still tangled and complicated. Giving voice to it doesn’t mean we’re “good at it.” I was on stage at TCOYD’s ONE conference last month sharing CGM graphs with peaks and valleys just after world-renowned endocrinologists shared their graphs with peaks and valleys. Education means information but not a flawless execution. We’re just talking, as one of my favorite podcasters from back in the day would say.
There’s no perfect. But talking about it helps alleviate the emotional muddle of chronic illness. Puts a little scaffolding around the tender parts.
And that stands to be remembered. As the health issues in my own meat sack body pile up, I’m reminded that it’s very Good Will Hunting style not my fault. This Grave’s disease? This frozen shoulder? This generalized anxiety? This is the party pack of health conditions I’ve accumulated because I’ve been lucky enough to live this long with diabetes.
Forty fucking years. What a shit show.
But it’s my beloved shit show! All of it. All my complicated relationships with people and food and the way I’ll break eye contact when family members talk about what it’ll be like when we’re in our 70s because I’m never sure I’ll ever make it to where they’re aiming for. But I’m absolutely determined to do my best on the approach. Even while scared. And I will bring a mighty carry-on backpack stashed with fruit snacks and an infusion set in case mine gets ripped out and an insulin pen with a fresh pen needle in case my pump goes sideways entirely, and my emotional support chapstick (h/t Austin) and a phone to call for help but also to take pretty pictures of wherever I am because it’s all going by so very quickly and all I can do is be prepared for whatever comes in all forms and let loose my screams of delight and fear as I arc through it all.
Forty years. Juice boxes have saved my life. If the fridge loses power, I’m fucked. This is so dumb. I can be on the edge of losing consciousness only to have a Welch’s fruit snack bring me back from the edge. This disease can be so unserious sometimes.
“No, you can’t have those! Those Twizzlers are my medicine.”
The audacity of diabetes to still crack me up after all this time.
I can’t believe I made it this far. I keep looking in the rearview to see if I’ve squished the squirrel. I am the squirrel! I keep dodging the tires. I look at my beautiful children, at my husband, at my parents and siblings, my aunts and uncles and cousins and nieces and nephew and my God, how lucky am I to live this squirrely life, to have this endless pile of nuts to love.
(Did I write that paragraph simply for the pun about my family being nuts? You bet your furry little butt I did.)
I’m so lucky to be here, to share my story, to try my best, to continue to have the chance to keep going.
And you — you keep going, too. Don’t give up. You’re not alone. Love you.
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