Snapshots of a Life Divided:

The T1D Diagnosis Divide

photo credit: pxhere

My dad texted me an old photo of my daughter yesterday. She was sitting on a picnic table at a zoo in Mexico, her hand suspended in the air as it reached for an animal-shaped chicken nugget from a paper basket piled high with fries.

“So little!” my mom commented in our group chat.

“Carefree days of no calculations for food,” was my reply.

Looking back at old photos, my mind categorizes them according to my own epoch dyad: BD/AD [Before Diagnosis/After Diagnosis] with Type 1 Diabetes.

Any of the anxieties of doing parenthood that may have surrounded the BD photos have melted away. Gone are the worries about sleep training, the random rash to bring up to the pediatrician, the sleep deprivation of baby days.

Now I can only see a carefree existence of grazing on snacks, running through fields, jumping in the pool and staying there until our skin gets wrinkly, having a spontaneous carby lunch date, singing happy birthday in front of a cake whose carb count is blissfully unknown and running our finger through the icing without thinking twice.

There are no numbers constantly running in the background. There are no alarms. There are no juice boxes. There are no scales. There’s no mental math. And the only pokes are part of routine vaccinations at the doctor’s office.

The photos that predate diagnosis by just hours or days are the hardest to look at. You can see the signs now, you brace because you know what’s about to happen and what’s already brewing under the surface, you can feel that in an instant, nothing will ever be quite so simple again.

In one really just before photo, my daughter stands in a Disney dress, holding an empty plastic Starbucks cup filled with a mix of mud and water that she’s concocted at the splash pad. She’ll soon be wearing the same gown in a hospital bed.

It took a while for me to reclaim enough confidence to do park outings after discharge from the hospital. My spontaneity was stifled. Even if it didn’t make any sense, staying home felt safer.

The first time in our AD era that I mustered the courage to return to the park where my daughter had made her mud smoothies, I was a ball of anxiety. I tried to be present in the moment without checking my phone. I tried to go down the slides and chase her to the grass without being glued to a number from her continuous glucose monitor.

Presence in the AD era feels different. Time is divided into 5-minute intervals marked by a blood glucose read. My phone, which allows me to follow these numbers, feels more like a diabetes device than a tool for communication. There can be a compulsive urge to reach for it, or to check with a tap of the finger on my smartwatch face.

My attention is somehow always at least partially divided, half running in diabetes mode (what is the number? what is the glucose trend?) and half trying to live. Life feels precious because you are charged with sustaining it night and day, running on sugar and insulin.

“I just went like 30 minutes without thinking about diabetes,” my husband announced the other day. It was a small victory, a win for presence.

And then in the night, he awoke with a start to ask the questions that live on the tip of our tongues: “What’s the number? What’s the insulin on board [i.e. active in her system]?”

I assume that if old age someday leaves us with holes in memory and confusion, we will still have the clarity of unconscious mind to ask about the number.

For now it seems I will never be able to reclaim the kind of presence of the BD era, to get totally lost in the moment, to let all of the vigilance clinging to my shoulders slip away, to sleep so deeply that some tiny corner of my mind powers off diabetes mode for the night.

But I work each day to reclaim part of it and to never let type 1 diabetes steal the belly laugh joy that preceded it. Presence may be harder to claim, but it’s also more precious than ever before.