“Wait, what’s diabetes again?”: Perspective from a 9-year-old

“Wait, what’s diabetes again?” my 9-year-old cousin (we’ll call him Daniel), inquired, eyes widening.

The wind suddenly knocked out of me, I deflated like a balloon in my chair at the dinner table.

He doesn’t know?

Thank God he doesn’t know!

How can my response enlighten him while maintaining his innocence, leaving him just the way he is- unscathed by diabetes?

How do I explain a disease that rocked my world by the time I was his age, while simultaneously praying that he never truly has to understand?

My grandmother had been describing a friend who was exhibiting the telltale symptoms of diabetes onset- extreme thirst and sudden weight loss.  Despite being familiar with the disease, my grandmother had not jumped to the diabetes conclusion.  Her friend was older and type 1 diabetes was not on the radar.  Thankfully, her friend was diagnosed and received proper treatment.  One drop of blood was tested in time.

As we lamented the lack of awareness of the warning signs of diabetes, I noticed Daniel’s focus shifting to us.  He fidgeted in his chair, the wheels spinning in his head.

Do I drink a lot?  Do I pee a lot?, he wondered.

Then: “Wait, what’s diabetes again?”

I took a deep breath and blinked back tears, buying some time to regain my composure.

“See this roll on my plate?  When you eat this roll, something called insulin helps you to process the food and receive energy from it.  I have diabetes.  So my body does not make insulin to cover the food that I eat.  I take shots of insulin to stay healthy,” I replied, except there were many more “umms” and much less eloquence in that moment.

Daniel looked directly at me and nodded.

“Oh, okay,” he said, satisfied with my explanation.

And with that he took off, dancing around the living room with the other cousins, back to more pleasant daydreams of race cars and Legos in place of insulin syringes and frequent urination.

Back to the way it should be.

We need a cure.

 

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The Liars’ Club, Catholic Grammar School Vignette Edition.

“You write like a chicken!  The nuns didn’t teach you any better than that?”  one of my many “Work Moms” asked.

In my defense, I should’ve been a lefty.  But I did get off easy with the nuns of Catholic “grammar” school compared to my Work Moms’ tales of the ruler cracking their knuckles for poor penmanship.

In “grammar” school, they taught us grammar.  My math, science, and arts skills are lacking to this day.

Reflecting on our Catholic grade school lessons recently, I confessed to one Work Mom that I was, in fact, a member of the first grade Liars’ Club.  Granted, I’m no Mary Karr, although that would be pretty darn cool.

It was Christmastime, and we celebrated with the appropriate holiday page in our first grade coloring books.  The scene was that of a Christmas tree decorated with big, shiny ornaments and a gold star on top.

“Are you done?” Sister Catherine* asked.

*Name changed because I still fear her wrath to this day.

The body of the tree had yet to be filled in with the evergreen colored pencil.  But I’m done coloring the ornaments, I thought.

“Yes!” I replied.

Sister Catherine’s eyes widened in fury.

“Liar!” she screamed.

You didn’t let me finish, I thought.

“God doesn’t like liars!  Shame on you!” she continued.

I blinked back tears and repeated my internal mantra, Do. not. cry.  I had simply misunderstood her.  In hindsight, I suspect that my blood sugar was low.  The fuzzy feeling where it all makes sense in your own head, but makes-no-sense-in-anyone-else’s-head-and-you-know-it, was definitely present.

This week, decades removed from the grammar school incident, I found myself in a similar predicament.  Words made sense in my head, but I needed to get them out into the air in order to breathe easier.

I took a sip of my iced coffee, exhaled, and looked my endocrinologist in the eye.  Do. not. lie.  And Do. not. cry. while you’re at it, I reminded myself.

“I don’t eat enough carbs.  I’m way better than I used to be, but I need more.  That’s part of the ketones problem,” I admitted.

Endo didn’t call me a liar.  She didn’t bristle at the words that made sense in my head, and now made sense out in the open, too.  Instead, she nodded and we immediately jumped into troubleshooting mode, discussing target carb-consumption goals and more.

I don’t eat enough carbs because my blood sugars do better on a low-carb regimen.  But perhaps I have veered too low-carb at times, so my body burns fat for fuel.  Hence, ketones.  Hence, dangerous.  Hence, this problem must be solved so I can live a full, enjoyable, healthy life. 

I also don’t eat enough carbs because I just plain couldn’t trust my defective insulin pump products to deliver the insulin to cover those carbs in the past.  Anxiety.  Mentally, it was easier to go low-carb than to deal with the sky-high values when the pump failed as often as it did.  This snowballed into a sticky situation, the residuals of which I am still trying to shake free from my mind.  Just because I am injecting insulin now does not necessarily mean that my brain feels any differently about carbs or insulin.  Only time, prayer, and hard work will tell.

^ All of this was understood and accepted, a starting point of honesty from which to move forward.

“Do you still talk to Dr. X?” Endo asked.

“Yes,” I replied.

A few days later, I went to see Dr. X.   I wasn’t happy with what I had to tell her about carbs- that this was a bigger issue than I had perhaps thought that it was.

But I didn’t lie.

***

“The truth will set you free.” -John 8:32

The Dunkin’ Donuts Vignette

“I’ll take a small hot coffee, very light, no sugar,” my father said to the bored high school aged employee.

“And a lemon donut, too,” he almost whispered, hoping my four-year-old, newly-diagnosed-with-type-one-diabetes self would not notice the snack he was sneaking home.

“You want a plain donut?” he squatted down to ask.

With wide eyes, I scanned the row of baked goods in front of us.  Jelly, strawberry frosted, sprinkles- all of the things that even my young mind comprehended as off-limits.

“I want a chocolate one,” I said.  No harm in trying.

“No chocolate.  You can have a plain donut, okay?” Dad offered in a tone that feigned the appeal of a donut whose very name was inherently boring.

“I don’t care,” I replied calmly, the first of many times this phrase would be uttered mostly to convince myself that diabetes did not hurt me, but also to protect those who loved me from seeing that it did.

“Ha!  You can have a plain one!” laughed a stocky truck driver in line behind us.

Dad hadn’t heard him.  I buried my face into his leg while he paid for our order.

My lip quivered on the car ride home.

“What’s wrong?” Dad asked.

“A man in there teased me about the plain donut!” I screeched.

“What?!!  Who does he think he is?  You just remember- your Dad is the strongest man in the world.  Nobody will ever mess with you!” my father advised.

I chose to believe Dad over the late-1980s version of what we now call a “diabully.”

And the plain donut wasn’t that bad, either.

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Your Grandma’s Diabetes Vignette

“My grandmother died of diabetes,” my ‘boyfriend,’ Jake, mentioned offhandedly as we climbed rocks in the woods behind his home.

We were in fifth grade, and the act of dating consisted of parentally-supervised playdates a few times each month and the added privilege of swapping prince and princess Disney-themed Valentine’s Day cards in February.

“No she didn’t,” I retorted.

“Yes she did.  She got really sick.  I don’t think she had to take shots like you.  But the doctors said she died of diabetes.”

“People don’t die from diabetes.  It must have been something else,” I replied, shaking my head as if to dispel the prospect.

The thought had never really crossed my mind before.  I knew low blood sugar left me pale and shaking on the floor.  But did people actually die from this stuff?  I pushed the notion to the anxiety cupboard of my mind, a place from which I often plucked a topic to pester my mother about on the car rides home from school.

“Do people die of diabetes, Mom?”

“I don’t think that’s something you have to worry about,” was along the lines of her response- a well-played verse which straddled the line of truth just enough to shield me from the painful reality of the answer.

I packed the concept of death via diabetes back into the anxiety cupboard of my mind and closed the door tightly.  Why had he said it if it wasn’t true, though? 

Today I realize that Jake simply wanted his grandmother’s story to be heard, especially by someone who understood firsthand the turmoil of the disease that took his grandma away from Christmas mornings with her grandchildren far too soon.

If I ever walked into a bar now and happened to find Jake swigging from a frosty mug, I’d tap him on the shoulder and tell him that his grandma’s diabetes is different from my diabetes, which is different from your diabetes, which is different from Ryan Reed’s diabetes.

Then I would buy him a beer, apologize for his loss, and sit down and listen to his story.