Voices Carry.
There’s no generation assigned glibly to me – not a millenial, not a Gen X’er, but I seem to be an “xenial,” according to this new write-up. I identify completely with “experienced an analogue childhood and a digital adulthood.”
My journaling has gone from paper journals to blog posts, too. I used to keep volumes of chaotic ramblings as a kid, before switching over to blogging. I’ve written over 2,760 entries on Six Until Me, chronicling my diabetes since May of 2005. And recently, I’ve wondered what keeps this pen to paper (or, more accurately, these hands to keyboard). What’s the point in sharing my story?
Even my diabetes has made a transition from analogue to digital. When I first came home from the hospital after my type 1 diagnosis, my mom used a urinalysis kit for a month before gaining access to a glucose meter. (Note: Glucose meters were available, but we didn’t have one for four weeks) My glucose meter was an Accu-Chek Brick (not the real name but could very well have been) and my lancing device was this wretched thing.
Glucose results were not stored in my meter but instead were logged by hand. I didn’t count carbs; I followed the ADA’s exchange system. Two starches, a protein, a fat, a fruit … and a headache with each meal. My insulins were NPH and Regular and yes, the bottles had little cows and piggies on the side.
Thirty years later, the touchscreen insulin pump on my hip delivers fast-acting insulin without uncapping a syringe. A continuous glucose monitor offers up glucose results every five minutes. My meters download and upload to the cloud consistently and even my prescriptions can be refilled using an automated service. My diabetes has gone entirely digital.
… except.
That it remains diabetes. All of the technology is truly amazing and life-changing, but this body still doesn’t make any insulin. Still experiences blood sugars above 200 mg/dL and under 60 mg/dL. Exercise is still an exercise in planning and perseverance. Still doesn’t process food physically the way that people without diabetes do. Mentally doesn’t process food the normal way, either. Or the concept of longevity.
Diabetes is a raging back burner that is on all the time, despite going digital, because it is still NOT CURED.
And that’s what keeps me sharing my story, and sharing stories from other PWD: it’s still not over. We’re surviving and thriving and kicking a tremendous amount of ass but we’re still doing this with diabetes dragged behind us, a weight that is light as a feather some days and heavy as an A380 on others.
Our voices carry. Sharing your personal diabetes experience helps it reach the ears and eyes of someone who needs that affirmation that they aren’t alone. Stories change over time, too; and diabetes has been a part of all of those experiences. When I first started writing, it was about college and dating and finding a job. Then it became planning a wedding and cultivating a career. Now, twelve years later, it’s a lot about traveling, expanding my writing, and raising my children. My life has changed, is changing, and sharing these experiences shows one small version of what life with diabetes might look like.
That yeah, it’s diabetes and it’s not over. But my life is also not over.
So cheers to you, all of you who are sharing all the triumph and chaos that comes with chronic illness. Our collective cadre of storytellers – the ones who write about incredible feats of strength and conditioning their bodies. The ones who write about creating life. The ones who share the mental health perspectives. The ones who influence policy. The ones who talk offer a moment of “me, too.”
The ones who change minds.
The ones who change hearts.
We keep going because we don’t have a choice to leave diabetes behind. But we do have a choice to bring hope forward.
I’ve gotten lazy in my diabetes management. And I’m not proud of it. My recent A1C result was still in my goal range but not where it was a few months ago, and I’d love to return to that level of control. Thing is, I’ve gone soft when it comes to following through on my daily diabetes duties.
Since the age of 4 I have lived with chronic health conditions. It started with an ear infection at the age of four, which developed into a chronic heart condition called a complete heart block resulting in the need for a pacemaker at the age of 25. At the age of 15, I had corrective surgery for my spine, which had developed serious scoliosis. Five weeks after this surgery, I was in the hospital again being diagnosed with type 1 diabetes.
