Thursday, February 28, 2019

An Introduction

After 50 years of starting every morning with an injection of insulin, I’m now qualified to receive a medal. This year of blog posts are a commemoration. My stories are of ups and downs, both emotionally and physically, of danger and complacency, of adaptation and resilience. I’ve had networks that have saved me and of loneliness that has challenged me. This is my tale.
I hadn't seen this when I named the blog in 2012.
From Leetrussel's Pinterest Board

I’ve had friends who I haven’t seen for a while ask me, “How is your diabetes?” to which I remain hesitant in how I respond. For me, the question reflects an interpretation of diabetes is something outside of myself, a temporary affliction of baggage that I need to carry around until I check in. In fact, diabetes is the secret, invisible ball and chain held within my skin. It’s bourne in life, every day, and never leaves the hidden pocket of my mind. Some days are better than others, but it is always there.

My routine attention to physical being never ends. Like doing the dishes. Every morning with a blood sugar check and an immediate sense of elation (I’m 114, normal!) or resignation (woops, 269, you’re at fault). The high readings sound like the voice of the doctor chiding me a bit for not adhering to the regime and begins the familiar refrain of needing to be better, do better and perform. The day unfolds: injections, coffee, breakfast, and projects.

The routine is impacted by external forces. There are times when you are running hard and things pile up. Perhaps you get sick or there’s stress that sends the sugars rocketing. There are times when you’re distracted and lose sight of the simple stuff, like going for a walk, that should be done every day. When the blood sugars won’t come down after bolusing, my body is the heavy weight of a cast iron skillet that has to wait on the stove until it cools down enough to clean. Then, when it’s ready, I can gently massage with the scrubby, gently season and put back in the cabinet for next time. In general, my dishes are routine but they never end.


In moments of transition, when I am traveling, preparing for a long day away from home or simply embarking on a new activity (and especially with people I don’t know), I am hyper-prepared. I button up, prepare for contingencies and leave the dishrack cleaned out and the bag packed. There are accidents, of course. One day in the Alaskan backcountry on a daylong ski trip with a group of casual friends, in a quick twisty moment and under multiple layers of clothes, the cannula at the end of the tubing for the insulin pump tubing tore away from my flesh.

Grumbling, I dismissed an offer of assistance and I headed off to a private area to bare my bruised stomach in the crisp spring sunshine. Fumbling for the supplies while on my skis, I prepped the site, and jabbed the needle in to get a clean route for the insulin, reconnected the tubing, pumped up to prime, fastened the tape and added some new duct tape for good measure. I took a moment to stretch, pack up and rejoin the group.

For me, living with Type 1 diabetes since 1969 is a constant thread in my life. It can’t be separated from my identity. It’s an obligation to myself and those who love me to stay the course of self-maintenance. I try to aim to the healthy choices, to stay on the path to light even through those moments where I feel a snuffer over the candle of optimism.

I can’t compare myself to other’s experience, but I remember a moment where I felt crystallized in my understanding of living with a chronic, life-long condition. At a political fundraising event for a progressive candidate running for office for the first time, Tim introduced himself and his motivation to run. “I survived cancer.”, he said, “and those of us who have been through that know that it rearranges your priorities”. He nodded to another colleague who also survived. They shared a bond then, an acknowledgment that they hadn’t died despite a horrible disease and a traumatic treatment regime. An experience that I wouldn’t wish on anyone.

At that moment, I realized that there may never be a day when I could be called “Diabetes-free” and see a stage of my life become a fading image in the rearview mirror. My dishes are along for the entire ride. This is mine forever.

What a nice ride I had! I unearthed this photo from the boxes
in my parent's basement and laughed about
the state of my right leg. To this day, still one of
the more scarred parts of my body.