Shouting into the silence

La parole humaine est comme un chaudron fêlé où nous battons des mélodies à faire danser les ours, quand on voudrait attendrir les étoiles.

A blogger I admire, diabetes dad, wrote this week, questioning the purpose of Diabetes Awareness Month.  Those in the community know all too well about the condition, but those outside remain largely untouched by our initiatives, he suggests.

I too question it.  Will this blog extend to anyone who is not already educated? Even those willing listeners must be starting to feel I’m monotopical: at best a dripping tap, at worst, someone saturated in the diabetes deluge, desperately needing a bridge back to normal life.

In short, a little bit of a bore.

Then another kind, wonderful, educated, friend asks me gently, “won’t you prevent it in your other children through diet?”  And as I absorb those well-meaning words with their fundamental misunderstanding, I know I can’t stop talking if there is a chance someone might hear the messages:

  • Type 1 is an autoimmune condition – the body’s antibodies mistake the pancreas cells for something else (e.g. a virus) and destroy them.  Diet doesn’t come into the equation.
  • It can’t be prevented or reversed
  • It can only be controlled by constant analysis of blood levels and by trying to match insulin dose to carbohydrates in food, taking account of activity levels.  It will never be stabilised.

My son wants to shout too, but for slightly different reasons. He has a wonderful class, amazing children, “but” he worries, “they don’t understand.”

“Sweetheart” I say, full of advice this time, “of course they don’t understand.  They can’t because they don’t walk in your shoes.  It doesn’t mean they don’t care.”

I was heartened then that the short (and shoddy) film I made for his class went shockingly viral (well, 8,400 views).  It seemed to strike a chord with some in the community and I think/hope, with those figures it reached beyond our immediate circle.

You can watch it here.

I worry that Joe will be defined by his condition.  I worry that my shouting defines us both. As a professional communicator, and parent, I know that lots of shouting doesn’t mean anyone will hear.

But it’s all I can do.  I can’t make it go away, so I stamp on it, view by view, hit by hit.  Thinking that some understanding will make it better. Like an infinite game of whack-a-mole, another headline pops up, another misunderstanding emerges.  And again I swing my mallet.


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