The Imperfect Miracle of Insulin

After all the years of living with my husband, I know him well.  So I know that when I hear him say the word, “shit,” I don’t need to pay any attention to it.  It’s a sign of a minor annoyance.  If I hear more than one shit, however, I know something is up.  And the night, about two years ago, when I heard a chain of at least 10 shits, I panicked before I even knew what was wrong.

I’d been right to panic.  It was close to midnight, and instead of injecting himself with Lantus (nighttime insulin), Mike had picked up the wrong pen and injected himself with Apidra, fast-acting insulin.  He’d taken twenty units, his Lantus dose.  It was enough to cover at least 200 grams of carbohydrate.

“You have to go to the E.R.,” I said.

“What for?” Mike answered.

Not really sure what the protocol would be in such a situation, I guessed.  “A glucose drip!”

“No,” Mike said.  “I’ll just stay up and eat.”  He wasn’t hungry at all, but there was no other choice.

We both stayed up that night.  All night.  We set a few alarms in case we fell asleep.  We had a plate of fruit on the table, a bottle of test strips, a couple of glucometers, and I was looking for the glucagon kit, just in case.  I was sure we had one.  But we didn’t.

To anyone who doesn’t know first-hand what it’s like to be insulin dependent, this might not sound like such a big deal.  Just eat something, right?  Have a few bowls of ice cream, some candy.  But diabetes and insulin dosing are anything but simple.  As my friend Elizabeth Snouffer of Diabetes24-7 wrote, “The toughest aspect of having insulin dependent diabetes is managing the side effects of insulin therapy.”

Even when you think you know what your insulin requirements are, they can vary depending on what you ate in your previous meal, how much of it was fat, and how much protein, and how fast it breaks down in your body, and how much you’ve moved, how much you’ve slept, how much stress you are under, what altitude you’re in, if you’ve lost a few pounds, and so on…  And here’s the thing about insulin, while it saves us and we can’t live without it, it can also kill us.

There’s a general misconception that the problem with insulin therapy is that it requires an injection.   It’s true, shots aren’t fun, but they’re the least of the problems with insulin.  The biggest problem with insulin is that  it’s one of the most dangerous drugs around.   There aren’t very many drugs in patients’ hands  (are there any others?) that are self-dosed, and that if you take a little too much of, can lead you to have a seizure, fall unconscious, or even die.  Insulin therapy is crude.  Even in the most responsible hands, mistakes happen.  Mike’s case was nothing more than human error. He was exhausted, distracted, and stressed.  Those aren’t good excuses, I know.  He knows.  We feel lucky he realized his mistake immediately. (And by the way – why, Sanofi aventis, why, why, why are your insulin pens identical?  Why can’t the Lantus pen have a different texture, say, little raised bumps like a piece of Lego?  People use it at night.  People who can’t see well take insulin.  Why don’t you think of these things?)   Sometimes there are mechanical errors with insulin pens, pumps, and infusion sets.  And sometimes, things go wrong for no reason at all. Sometimes blood sugar levels don’t behave the way you expect them to because diabetes is a wild beast that, even when you think you’ve got it tamed and trained, can lash out at you in full force.  And that lashing can bring tragic surprises.

Just a few days ago a child lost her life to something known as dead-in-bed syndrome.  Though the exact cause of this syndrome is not known, according to the Children With Diabetes website “nighttime hypoglycemia is a likely prerequisite of the event, but that the death is sudden and probably caused by cardiac arrhythmia.”

I did not know the child who passed away, and I don’t know her family.  I don’t know anything about them, other than the fact that their daughter had type 1 diabetes, and that she was very well cared for, and despite the excellent care, she died in her sleep.  Without knowing  more than that about this family, I still feel a bond with them, as I know many others living with diabetes do.  Someone fell victim to the fear we all live with – the fear of not waking up in the morning.  And it was a child.

The children who live with diabetes and the people who take of them are heroes.  Strong, brave, and resilient.  They never get a minute off.  Any my heart goes out to the family who did everything right, and still, it wasn’t enough.

As our featured story today tells you, the New York Historical Society is celebrating the miracle of insulin.  So is a new book, Breakthrough.  I join them in this celebration, but with a touch of  bitterness.  I’ll really celebrate when there is a safe therapy for type 1 diabetes.  Not to mention a cure, or at least a real means of prevention.

To avoid ending on a depressing note, I’m embedding this Sesame Street video, What I Am, which I first saw a link to on dblogger Bernard Farrell’s Facebook page.  It may be a chain of cliches, but they are happy, uplifting ones, and I’ll take that any day over a chain of shits.  To all of us living with diabetes, and especially the children, what you are is strong!

[youtube]http://www.youtube.com/watch?v=cyVzjoj96vs&NR=1[/youtube]

Jessica Apple

Jessica Apple grew up in Houston. She studied Bible and Ancient Near Eastern Studies at the University of Michigan, and completed an MA in the same field at the Hebrew University. She began to write and publish short stories while a student, and has continued to write essays and fiction while raising her three sons (and many pets).

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Jessica Apple

Jessica Apple grew up in Houston. She studied Bible and Ancient Near Eastern Studies at the University of Michigan, and completed an MA in the same field at the Hebrew University. She began to write and publish short stories while a student, and continues to write essays and fiction while raising her three sons (and many pets). Jessica’s work has appeared in The New York Times Magazine, The Financial Times Magazine, The Southern Review, The Bellevue Literary Review, Tablet Magazine, and elsewhere. She is the diabetes correspondent for The Faster Times. In 2009 she and her husband, both type 1 diabetics, founded A Sweet Life, where she serves as editor-in-chief. Jessica loves spending time with her sons, cooking with her husband, playing with her cats, reading, biking, drinking coffee, and whenever possible, taking a nap. Follow Jessica on Twitter (@jessapple)