When I switched on my OpenAPS ‘artificial pancreas’ in May 2018, it was the end of a long wait. A 38 year dream come true. I bounced around like a maniac for months on a high, and my gratitude to the smart, kind people who developed the system knew no bounds.
What I wasn’t prepared for, was that within an hour of ‘closing the loop’ I’d be hit by a wave of emotion so powerful that it would pretty much render me incapable of moving. I was lying on my bed, gleefully texting some old diabetes pals with screenshots of my Nightscout site, to show them the algorithm controlling my diabetes, when the true impact of the technology hit me.
The impact of the burden, finally being lifted. The impact of the burden, finally being shared.
My mind wandered to the generations of people with type 1 diabetes that had gone before me. Born at the wrong time to benefit from closed loop technology. I thought about a friend, diagnosed in the ’70s, who’d had a very difficult experience with diabetes and was on dialysis after the kidney part of her kidney-pancreas transplant failed. I thought about Mary Tyler Moore (!) and pioneers like Deb Butterfield, born too soon. I thought about friends who did not have the resources, tools or finances to benefit. Yet.
And then, as the tears started to stream down my face, I realised that I was crying for myself.
We don’t like to feel sorry for ourselves with diabetes. We are great stoics. We just get on with it because we have no choice.
We don’t all get a diabetes hug. We don’t all get a whole lot of compassion. And it can be hard to dredge it up for yourself, especially given the prevailing medico-social context of diabetes with its unintended insults.
So I just lay there, for about an hour, feeling things I hadn’t felt (or allowed myself to feel) for 38 years. And thus began, not just the process of reclaiming decent blood sugar levels, but the process of recovering, re-integrating and healing from type 1 diabetes itself.
2 thoughts on “The wave of sadness – unexpected”
Love this and I know where you’re coming from.
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Thanks so much for leaving that feedback. It’s hard to write about this stuff, so I really appreciate hearing from you. I’m thrilled that commercial closed loop systems are finally hitting the market and so pleased for the next generations. I’d love to see a future where everyone has the option to access this tech.