Monday, November 2, 2015

Nothing at All

Recently two young people died due to anaphylactic reactions to peanuts.  They ate food they didn’t prepare and did not have EpiPens on them at the time of death.

D and I discussed this wondering after years of knowing there are certain things you have to do to stay safe, why you would shrug them off.  What happens to make someone with a food allergy try a food they don’t know the origin of or leave their EpiPen in the car?

Nothing.  Nothing happens.  Nothing is responsible for a lot.

Over time living with a food allergy that can kill you instantly or over time makes you search for ways to normalize in a world of food.  No one wants to be defined by anaphylaxis or Celiac disease, so you start out following all the rules and that works, but you also look for ways to integrate as much as possible for convenience, physical and emotional.  Over time, you keep following the rules and that keeps you safe, but you might get lenient here or there.  You feel normal.  Following the rules most of the time starts to become second nature which means you don’t think about it that much.  You feel protected.  Nothing bad happens.

Because of that, not following the rules one time doesn’t seem like that big of a deal.  You always follow them.  Maybe you really did read that ingredient list with a somewhat discerning eye and little concern; you’ve felt good for a while.  There’s no immediate memory of horrific symptoms that you’ll suffer if you don’t do diligence perfectly.  Nothing bad has happened for so long.  What are the chances it will now?

The late Marina Keegan wrote an essay about this in her book The Opposite of Loneliness.  She was diagnosed with Celiac at 18 months old, and her mom helped ensure she was safe.  When Marina got to college, she writes of not being mindful of cross-contamination, not taking all the precautions she’d been taught were necessary.  Why?  Because the vague threat of an increased cancer risk seemed distant.  Her body had healed enough that nothing acute had really happened recently enough for the concern to seem real or tangible. It wasn’t until she ran across a research study on what the littlest bit of cross-contamination could do to any child she became pregnant with that the gravity of the situation hit her anew.  (Ms. Keegan did not die from Celiac-related issues.  She was killed in a car wreck five days after she graduated from Yale.)

We haven’t stopped following the rules; I still consider gluten a devil spawn.  But things were so somewhat normal, so nothing for a while that we forgot something:  Celiac is a horrible house guest.  Even when you stop feeding it, it doesn’t leave or it leaves behind horrible “gifts” to be found later.  You follow all the rules and Celiac doesn’t give you a gold star; it shoots you the finger.

That’s why I spent Wednesday night at Children’s watching my six-year-old get an enema.  Why would her colon back up?  Because Celiac.  Why even though she’s not eating gluten?  Well, Celiac.  The ER doctor wasn’t surprised at all, though I was confused because poop not coming out is usually not one of our problems. 

Anyway, it’s was a hard few days.  When I was at wits end trying to open the medicine Wren had been prescribed, I was huffing under my breath, “freaking lid, come off freaking lid.”  I looked up to find Wren standing right next to me and she asked, “Is my medicine called freaking lid?”  Oops.

We have to start the crazy stuff again, the writing down every bite that goes in her mouth, looking at everything she drops in the toilet.  This wasn’t necessary for so long, and it gave her some much needed space.  It also allowed for gluten-free treat items to move in and out of our house without constant monitoring of sugar content.  No more.  Nothing at all, then everything all at once.

And I think that’s how almost all deaths happen.  The death of a season of life.  Spiritual deaths and martial deaths.  The death of unrealized dreams. 

Nothing at all, then everything all at once.

The precautions are worth it.  The diligence and the little things that seem so little, in the end those are usually the big just viewed from a different perspective.  It’s worth guarding the small habits and practices to protect what matters, and we will.  We’ll do whatever it takes.

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