Got a lot a livin’ to do

 

As an A1c Champion, I am often asked to deliver educational/motivational programs to fellow people with diabetes.

Recently I gave a presentation in Buffalo, N.Y., where I was double-billed with a diabetes educator.  Her speech preceded mine, so I leaned back and listened. And what I heard was a solid forty-five minutes of A1cs, blood pressures, weight control, exercise, portion control, and carb-counting…in short, numbers, zones, and target ranges up the wazoo. Where is the humanity in this, I thought? Where is the patient in this? Where is the acknowledgement of the energy required to slog through each and every day? I saw my purpose–to talk about how we hold diabetes in our lives.

Taking the stage, I shared my own shock and fear upon diagnosis, my subsequent denial, and my early complications. The room quieted. I was, they saw, like them: a soldier in the trenches. I saw the landscape they saw; I tramp through the same dark forest; I look for cover when diabetes rains down upon me or drains me out.

“When you’re so busy testing every day,” I said, “reading labels, counting carbs, and calculating, do you stop to think why you’re doing all this work? Isn’t it to see the grandkids grow up, start that second career, create the best vegetable garden in town, contribute something to the world, or have another million days with your spouse?” Heads nodded and people leaned forward, turning from silent witnesses into curious, involved participants. Someone had understood and acknowledged this piece of living with diabetes where their heart resides, along with their anguish and struggle.

My predecessor, warm and personable though she was, didn’t have diabetes. That put her not just on the other side of the projector, but also on the other side of our experience, where unfortunately many healthcare providers sit. People are dying–literally–to hear their healthcare providers address the emotional issues of living with diabetes and while it’s not providers’ fault, if you don’t live with a chronic illness that greets you every morning unrelenting, on a fundamental level in the messy arena of some messy emotions, many physicians and even educators lack the training to empower us to deal with the psychosocial aspects. 

We, however, are in the business of chronic illness. We have life adjustments to make, and we have precious little help to make them. So here are my recommendations: Learn all you can. Appreciate what you hold dear. Pace your efforts and forgive your mistakes. Keep the vision of your ‘best life’ ever-present. And spend more time doing what you love. While we’re living with diabetes, let’s not short-change the “living” part.

Here is another thought: How about the idea that we are “more than,” rather than “less than”?  After all, we do this whole other job called “managing diabetes.” I think we should be living with our heads held high, showing others the invisible “superhero” cape we wear. Call me crazy, and I’m sure some of you will, but I see a gift in diabetes:  that of a longer, healthier life than I probably would have had without diabetes, if I manage it responsibly.

After the program, people crowded around to thank me, and they were smiling. How often do you imagine someone leaves a diabetes talk with a smile? That’s where I want this blog to take you–to a place where you connect to your heart and spirit, a place where you may see that diabetes can bring greater meaning and purpose into your life. And, yes, there’ll still be room for ranting on the tough days.