creative writing

Bingo


DBlog Week topic #4 is in regards to the healthcare experience.  Yours truly could write a novella about this, but instead I will direct you to a few relevant posts.

For my healthcare rants and proposed solutions, please see here, here, and here.

Erin Gilmer’s “To All My Providers” is a must-read.

I am well-aware of the flaws of our healthcare system, having studied healthcare in grad school, worked in it, and lived it for 25 years as a type 1 diabetic.  But for some odd reason, I just don’t feel like complaining about those flaws tonight.  Instead, I want to share a vignette about the spirit of healthcare that I wish the system embodied more often.

In 2014, I took a summer elective called “Healthcare and the Older Citizen” as part of my Master’s program.  I don’t know if I can really relate to this stuff, I thought.  But the instructor was my favorite, and we got to tour nursing homes and elder care facilities all over the state of Rhode Island.  Wins all around.

The juxtaposition of two facilities has always stuck with me.  Early in the season, we toured a fancy nursing home which cost enough to afford college tuition and then some.  The food was topnotch, organic, and prepared by the best chefs in the state.  The amenities rivaled an episode of MTV Cribs.  The picturesque sunsets were the stuff dreams were made of.  By the end of the tour, my classmates and I were ready to pack our bags and move in!

The residents at Fancy Home were not particularly memorable.  Nothing bad happened, per se, but nothing great was happening, either.  They kept to themselves and spent their days dining on lobster and not talking much to their neighbors.

Later that summer, we visited a different location, a Church-run, low income assisted living facility.  This place looked like the storage shed of Fancy Home.  The cafeteria was reminiscent of my Catholic grammar school days- overcrowded and overheated.  The food was run-of-the-mill, easy mac-n-cheese or hotdogs with green beans.

But the residents at Church Home were different.  There was a noticeable pep in their step as they gave us the grand tour.  One woman opened up her apartment to our entire class, and as we crowded into the room she showed us a black-and-white photo of a relative who- despite the diagnosis of diabetes at a time predating blood glucose meters- had jetted off to explore the world.  There were no regrets in that decision.

Other residents told us about the Friday evening luaus and Saturday Bingo tournaments, and the happiness of spending one’s days winding down on earth in the company of the best friends you could ever hope to encounter.  Life was good.  Death was with dignity, surrounded by people who cared about you.  The Afterlife was even better.

My classmates and I graduated from that course with a newfound appreciation for humanity in healthcare.  We understood that no matter how much flashy technology a hospital has, or how much money is invested, you still cannot put a price on healthcare that emphasizes the “care” part.  Love, respect, and grace go a long way, and these characteristics are relatable to any walk of life, any generation, any healthcare facility.

In order to provide good quality of life, healthcare does not always require the bells and whistles.  Perhaps we have been looking in the wrong places all along.  The secret to living well has been right in front of us, on Saturday evenings, at the Bingo tournaments.

 

The Cloak of Diabetes

Diabetes has a knack for eliciting the barter games, those if/then compromises we make with ourselves, with God, with anyone who will listen.  Parents wish to switch places with their diabetic children, to endure all of the needles in their places.  Authors like Gail Caldwell document the phenomenon: “It broke through my disbelief, my God bartering, my every other defense, and for this reason I both needed and hated to go there.”

When it comes to diabetes, I’m not sure I want another person to go there, either.

During #IWishPeopleKnewThatDiabetes day, organized by the lovely Kelly Kunik, I tweeted:

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Diabetes is not all misery and sorrow, but let’s be honest: It would be amazing to wake up each morning and not have to prick our fingers, perform Calculus to determine a breakfast dose of insulin, rein in the effects of that insulin if it is inadvertently too much or too little, push back against misinformed stereotypes of the disease, and think about this stuff frequently as we lead the rest of our busy lives.

Frankly, diabetes is not “fun” enough for me to want to pawn it off on anybody else in good conscience.  This is why #weneedacure for future generations.  It is also why I invented the cloak of diabetes which hangs in the hall closet of my mind.

The cloak of diabetes is a way to explain that I want empathy with no strings attached- no harm, no foul.  Empathy does not mean that my doctors or friends have to live 25 years of diabetes to know exactly what it feels like to me.  Ideally, empathy means that they “get it” without having “it.”  They do not need to have diabetes to understand how frustrating being awake all night checking blood sugars is; they can trust when I tell them that the level of exhaustion is off the charts when that happens.  They can realize that sometimes saying the right thing means saying nothing; sitting with me in those moments is enough.

Even if diabetes is mostly manageable in the midst of living a full life, there are still the bad days where it hurts like hell.  I do not want my family, friends, or doctors to hear the words “chronicity” or “no known cure” and to imagine that their diabetes sentences are lifelong.

Hence, the cloak of diabetes.  They could throw on the cloak and briefly experience the grumpiness associated with high blood sugar, or going to bed hungry but unable to eat.  The shakiness in their hands of a bad hypoglycemic episode would be an acute incident, resolving when the cloak of diabetes is returned to the coat check.  The anxiety of the “what ifs” would dissipate when their lab work came back normal.

They could “get it” regarding diabetes, without actually having “it.”  They could empathize while having a better picture of what diabetes physically and mentally feels like.

But then it would go away.  Diabetes is not something that I want them to know intimately.  A little bit is enough.  So, I go back to the God-bartering games.

If I have to have diabetes, please don’t let them have to have it, too.  Allow me to be accepting of their support. 

Can I hang up Your cloak?  The weather looks nice today.

Naked and Not-That-Afraid

Admit it. You clicked. But I pinky-promise Very Light, No Sugar is not about clickbait. Instead, let’s have a good time with this one.

The Discovery Channel hit a homerun with its series Naked and Afraid, which drops made-for-TV couples in the middle of nowhere and challenges them to survive together with few resources. Heavy emphasis on few resources. Because oh yeah, the individuals are naked while doing all of this, their not-so-PG-features blurred out with video editing and then broadcasted all over cable television.

I’d argue living with chronic illness presents similar trials. At diagnosis time, your entire world was rocked. You were thrown into unchartered waters with a leaky inflatable raft and asked to somehow make it all work. And you did. Some days are better than others, but even on the worst of days, you’re still floating.

Picture the tabula rasa of #doc Adam and Eve in the Garden of Endocrinology. They have no shame. They have not experienced the “diabetes police,” the misinformed stereotypes, the media onslaught. They are simply there, together. And naked. Except for those button-looking health technology thingamajigs attached to their skin.

Eve may have come from Adam’s rib, but the missing aspect of the story is that she came wielding prehistoric weapons of mass destruction: CGM inserters. Hence, Adam’s rib pain. From there, they took turns replacing insulin pump infusion sets for one another, the very first example of putting the “care” in healthcare. There were no deductibles or tense waiting rooms. This was solely Adam and Eve, charting the course together.

When they found the apple, they wondered how much to bolus for the carbs.

“This looks like a McIntosh. What do you think? 15 grams?” Diabetic Eve asked, squinting at the red and green hues.

“I don’t know. That’s kind of big. Won’t Endo yell at us if we don’t get this right?” Diabetic Adam fretted.

“Don’t be a wuss, bae,” Diabetic Eve retorted.

And so they each took a bite, tossing the apple back and forth. A few minutes later, the CGM beeped, its graph entering the yellow “high” territory just in time for the dreaded Endo appointment.

*****

As I previously wrote, I received my Dexcom supplies last week after fighting for far too long to obtain them from various avenues.

The new Dexcom transmitter has been great, from what the box still holding it tells me. After all of the drama in reordering the Dexcom, I would have bet money that I’d insert a sensor and begin the 2-hour warm-up within minutes of the package delivery.

But that did not happen. I do not exactly know why, but I have some educated guesses:

I got so burnt out by the process that I wanted nothing to do with health tech once the battle was won.

This is not for lack of being thankful; I am eternally appreciative of the positive impact of diabetes technology. Instead, this is about needing a break, to not think about something that consumed my thoughts for weeks as I awaited its arrival. Considering I use insulin pens instead of an insulin pump, my body is momentarily device-free. Now I’m working on such a literal and figurative diabetes reprieve for my psyche, too.

Perhaps the tech hiatus is also a “screw you” to our ridiculous, convoluted system. The healthcare loop-de-loop may have briefly stripped me of my dignity, but this tech vacation affords me some “control” again. I have the ability to make my own decisions about my body, mind, and soul.  This is the first step in putting my anger aside to do so.

Years ago, the conversation would have played out like this:

“You’re so stupid! How can you be so ungrateful? After going through all of that to get a new Dexcom, and spending all of that money, you’re just going to let it collect dust in the corner?!! Just so, so, stupid. So selfish.”

Many conversations with compassionate friends and healthcare providers later, I know now that the people who said those harsh things to me could never handle the constant nature of diabetes if they had to live it. I can. It is not always graceful, but I do it. I’m not stupid. Or ungrateful. Or selfish.

Tired? Yes. But every new morning is a “reset button.” This time I will not be pressing the button on a tech device; this reset button is an emotional one that cannot be objectively quantified. Its name is Freedom.

Diabetes is a catch-22, a continual give-and-take, a balancing act on a tightrope that is jostled every few minutes. Sometimes we have to weigh the risks and benefits, the pressing concerns and the long-term impacts. In doing that, I recently realized that my emotional needs trump the physical safety ones provided by Dexcom, in this immediate moment.

Although I miss Dexcom alarms alerting me to problems overnight, I have to trust my own intuition again. Strip it down, back to the basics, Diabetes 101. Simplify.

I set nighttime alarm clocks and hope that now is not my time to go via an unshakeable low blood sugar in my sleep. And if it is my time to go, well, that’s mostly in God’s hands, anyway. My gut tells me that a Dexcom break for a few weeks will do more good than bad, so I’m running with that idea. I am trusting in Him, and trusting in me.

When I am ready, I will definitively return to CGM. Without Dexcom, I find myself looking back at my apartment whenever I climb into my car, sensing that I left something behind, like I am reaching for a familiar hand that suddenly is not there. I miss slipping into Dexcom’s added diabetes security blanket like it is a favorite pair of boots, the perfect fit.

For now, though, I am going to enjoy the little things again: the long, hot showers; the consumption of McIntosh apples with old-fashioned carb-counting and blood sugar checking a few hours later; the silence of a room devoid of vibrating tech devices; what it feels like to be Ally in her own skin- skin that is entirely her own real estate right now.

Like Diabetic Adam and Eve, I am naked and trying my best to remain strong, and good.

I am naked and not-that-afraid.