Chillingly Familiar Graphs

November 10, 2010 the FDA and NIH held a public workshop to discuss progress towards a semi-automated insulin delivery/ glucose monitoring system.  This workshop was “webcast” meaning anyone with internet access could watch and listen from their computer.

Screenshot from the FDA - NIH Public Workshop This workshop lasted all day, and I was only able to watch a few hours of it.  It was well worth the time to me, and I thought it was pretty cool to be able to get a glimpse of some of the dialogue from all sides.

There are many emotional hot spots around this project, and I’m ignoring all of them for the purpose of this particular post.  What I’d like to talk about is something that hit me hard while watching, and has stuck with me ever since.  It is also closely tied to my last post about those we’ve lost to diabetes.

I think I’d like to talk about this briefly, then stick the fear and sadness back in a box until something else cracks open the seal again.

During the presentation there was a section showing CGM graphs from those who died in their sleep.  It took only a second for my heart to stop and for a cold chill to run through me.  I couldn’t hear what the man was saying, I couldn’t read anything on the screen.

I was stuck looking at a graph I’ve seen a thousand times on my own CGM.

Picture of my Dexcom graph going dangerously low at night.

Of course it didn’t look exactly like mine, but it was close enough to register with me that any of these “cases” they were talking about could so easily be me or you or any of us.  What made me wake up, but these others not?  We were looking at CGM graphs, so they had the same tools I do.

That low I had was long, and at just after Midnight, and it looks like it took me a while to wake up and test.  Just like them.  Except they didn’t wake up.

I was talking to a friend of mine from the YMCA yesterday.  He’s a pastor at a local church here, and we were talking about prayer.  He asked me about my prayer life, and I shared that every single day I thank God for waking me up again.  I talked about the deaths that have been on my heart and mind lately, and how diabetes can sneak up and take us so quickly and quietly in our sleep.

He thought a bit, and to his credit was really trying to understand the layer of terror that diabetes wraps us in as we go to bed.  He tried to liken it to walking outside and being killed by a bus, or getting in a car accident due to someone else’s bad driving.

In the moment I thought that yes, that sort of fits, but it’s not quite the same.  It doesn’t carry the same weight for some reason.  But why?  A freak car accident is just as terrible as a nighttime low, maybe worse.  I don’t know.  I just can’t put my finger on why that analogy doesn’t sit well with me.

I think I should feel safe if I’ve made it through the day into my bed.  I’ve managed to avoid all of the hazards out there and am safe now.

But sometimes it’s the scariest thing in the world.

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Scott K. Johnson

Patient voice, speaker, writer, advocate. Living life with diabetes and telling my story. Patient Success Manager, USA for mySugr (All opinions expressed are my own and do not necessarily represent the position of my employer).

Diagnosed in April of 1980, I recognize the incredible mental struggle of living with diabetes. Read more…