What We Must Not Say

Today I read about Sanofi's Diabetes Advocacy Summit.  The blogger I read was frustrated at the lack of progress.  The commenters voiced their frustrations, as well.  Yet, between the lines are the reasons for the lack of progress.  Sniff, and you can smell the bullshit we all accept.

Maybe it's like the smell of the manure wafting from the farms north of me.  Living amidst it, the farmer doesn't notice the smell.

There are things we don't question.  Things it is heresy to question.

The blogger is tired of hearing that we need to be more unified.  Yet the unification I too often see is an Us vs Them mentality, Type 1 vs Type 2.  An educated white woman worries about limited resources without questioning the idea behind it: that some are more deserving than others.  That if one group gets what they need, another group must do without.  Yet, I wonder how often she has been denied access to insulin.  Despite whatever connection she may have to a prestigious university, she seems ignorant that many with Type 2 also make no insulin while requiring even larger amounts to keep their blood sugar in range.  Shouldn't we be working toward enough insulin for all those who no longer make enough?

If we want the public to be better educated about diabetes, those who speak out need to be more knowledgeable.  Too many assume that diabetes, especially Type 2, is a lifestyle disease, easily preventable.  It's not.  Diabetes is an endocrine disorder, the result of a malfunctioning pancreas, that results in high blood sugar. 

I am tired of the stylish spokeswomen for the ADA knowing nothing about diabetes beyond what they heard on Dr. Oz.  Interim CEO Suzanne Berry may have a "strong background in disease-related non-profits" but for her salary she needs to know something beyond how to raise money.  She needs to know how diabetes works.  If she were working for General Motors, wouldn't she need to know something about cars beyond where to insert the key?

The national diabetes data registry sounds promising, especially as it will supposedly include LADA, MODY and GDM as well as Types 1 and 2.  I wonder if they will include the number of patients misdiagnosed each year.  And for those initially misdiagnosed, will the correct diagnosis be entered and counted?  Will fewer doctors assume that the patient must be another non-compliant Type 2 and will more doctors be encouraged to look beyond a patient's age and weight?

Will having more data lead to a shift in how we view diabetes?  Or will those in a position to change things pick and choose what they see?  Will they be able to change or will they keep doing what they do?

In with the New, Out with the Old

It's been months since I blogged.  I watch students blog.  I read others' postings and get sucked into Facebook discussions.

Was it three years ago when I started working on The Sweet Lowdown, hoping to change the world?  The world was bigger and more ferocious than I had imagined.  It didn't want to be changed.  The wounds from Sweet Lowdown are slowly healing, but each foray into social media reminds me how hard the rest of the world will fight to maintain the myths and stereotypes.  It's brutal out there.

Linking obesity with diabetes is so much a part of the culture.  It's in every news report.  Every research study must contain the phrase, whether it has anything to do with what was studied or proven or whether the evidence even refutes it.  We could jettison the Holy Trinity from Mass sooner than omit this phrase.

I hate the phrase every time I hear or see it.  It's a malicious and dangerous phrase, leading to misdiagnoses, denial of access to insulin, test strips and education.  It sucks money away from researching areas we prefer to keep hidden:  PCOS, famine-induced diabetes.  It blames and shames and makes everything harder.  If you just ate right.... If you just got more exercise....(You would cease to be a problem).  If you were just like me: Perfect.  Lucky.

It's driven by fear.  Augusto Boal said that the Oppressed become the Oppressors in order to escape (temporarily) their terror and agony.  One does not need to outrun the tiger, only the person closest to the tiger. 

I thought maybe we had done some good.  My first visit to my endocrinologist after she saw the play we talked about how my beta cells were functioning.  But six months later, she had reverted to her mantra.  (This is what she knows, whether it is true or false; this makes her feel powerful and safe.)  And once again the wheels of the bus grind me under.  I am a series of boxes on a screen.  When they are ticked off correctly, she gets a Gold $tar.

I've made some resolutions:  I stopped following the diabetes sites on Facebook.  Any comments I want to make, I'll make here.  I don't think anyone reads this, so I'm safe here.  Last November, I stopped taking the Simvastatin and the Levothyroxine and I've opted not to undergo colonoscopies or mammograms.  They have labeled me noncompliant, but then what I do is never good enough.  I still get the warnings of dying a horrible death.  But if I do everything they say, can they make me immortal?  Can they at least fix what is wrong?  I didn't think so.  Let's fix what's wrong, or at least not make things worse.

I want my life to be more than numbers on a medical chart.  I want to be the one who decides which numbers to ignore.  I live with those numbers every moment of every day.  They glance at them every six months and move on.  Why do they ignore the Cobb angles of my scoliosis tripling?  Why do they tell me to "eat less, exercise more, lose weight" but never look at what I eat or how many dance classes I take or the fact that my weight and insulin resistance both rose on the two pills?  Only I am looking after me.

So no more advocacy.  No more blindly doing as I'm told.  No more explaining to those who refuse to hear.

Last year's resolution was to sparkle more.  That's one worth renewing, intensifying.  I need to sparkle.  To shine.  To dance and sing.  To write crazy things and ignore the crazies who critique them.  To embrace and believe in good things.

Hello, Goodbye!

Pictures of Diabetes
Healthy food

The beginning of my day

What to do when you go low on vacation

No carb snacking on the road

Bouncy bouncy

I rejoin the Madison Theater community on my own terms.

The Sweet Lowdown, my play about diabetes

A Healthy Dose of Hedonism

First of all,  I'm not talking about self-destruction: Short-term pleasure paid for by a lifetime of pain.  This is hedonism as an antidote for nihilist Nietzscheism. Instead of "what doesn't kill you makes you stronger ( I always envision the speaker stepping over bodies)," this brand of hedonism preaches that pleasure makes life better while pain makes it worse.  Makes sense. The following are my rules for a more hedonistic lifestyle:

Eat only tasty food.  Don't eat the yucky stuff.

If I'm reducing how many grams of carbohydrate I eat because I hate the rollercoaster, I don't want any wasted on yucky food.  No boring food either.  White rice is boring.  Forget cheap candy.  Give me one really good bonbon.  Food should be a sensual pleasure, a delight for the eye as well as the palate. Red, yellow and orange peppers.   Purple potatoes. Exotic grains. Berries.  Fillets of salmon and beef. Experiment. Explore.

Life isn't a treadmill.  Dance through life.

I won't waste time doing things I hate, surrounded by unhappy people punishing their bodies for imagined sins.  The reason I am still in beginning ballet after half a century isn't so I can burn more calories or reduce my insulin resistance.  It's because I need to be a dancer.  I need to feel my body move through space.  I need to believe I am who I imagine myself to be, if just for a moment. I  dance in my kitchen, my living room, in taverns and clubs.  Baryshnikov isn't calling.

Don't be afraid to be ridiculous.  Life itself is absurd.

Don't put up with pain.

I use 33 gauge lancets and change them each time.  My pen needles are 31 gauge, 3/16".  Hated the giant needle of a pump's insertion set.  Even if it was every 3 days, I dreaded putting it in. And when I get my blood drawn, the phlebotomist gets one try.  No digging allowed.   If they can't do it the first time, I'll come back another day and they can explain why the lab is late. 

Diabetes is a chronic, exasperating disease.  The media paints it, and any ensuing complications, as the result of the sins Gluttony and Sloth.  Some diabetics buy into this and believe if they strive for righteousness and perfection, if they just don't eat, if they punish their bodies enough, if., if, if...  In trying to escape hell, they construct it around themselves and thrust it on others.

My blood sugar is 72 at nearly midnight.  A slice of Brie, some red pomegranate seeds should get me through the night.  The uncertainty of waking tomorrow requires each day to be filled with  pleasure. Sensual, delightful pleasure.

Mantras and More

Caring for our mental health is now on the list of other care we diabetics receive.  At each visit, I am asked how I'm coping.  Most of the time I give the prescribed answer: "Just fine."  I made the mistake of telling the truth once and was sent to a group meeting of other struggling diabetics.  Perched on an easel near the large conference table was one of those giant tablets on which were written two columns of coping strategies: what we should use and what to avoid.  Sort of like the "Do be a Do Bee. Don't be a Don't Bee" from Romper Room.

In the Do Bee column were listed Mindful Breathing and Yoga.  Both I've tried.  Neither work for me.  If I try Mindful Breathing, I can't breathe. My timing gets thrown off.  Inhale. Exhale. No, we're still on inhale.  Or are we?  I'm either hyperventilating or not breathing at all. In. In.  In. Was that supposed to be out? Now in? Now? No, out, no, in, no, what am I doing? I should not interfere with what my brain stem does so well on its own.

Yoga brings on another set of problems because I am literally a warped individual.  Remember when they dug up Richard III from that parking lot.  My husband said, " Look, his spine looks nothing like yours."  I'd just had a new set of xrays done, so I agreed.  I've got 2 curves, both of which are worse than the one he had.  Stress twists me into a corkscrew. Yoga positions warp my scoliosis even more.

On the Don't Bee side:  Alcohol. Drugs. Mind-numbing activities.  Alcohol tends to make my CGM bleat at 3am, which is stressful.  They won't give me a prescription for drugs.  Some months, I have a hard enough time getting a prescription for insulin.  So that leaves Mind-Numbing Activities. My most difficult times involve waiting for my blood sugar to crawl out of the basement or come down from the sky, all the while refraining from doing something that will make matters worse.  Mind-Numbing Activities come in handy for those times.  Here are my favorites:

• Playing mahjong and solitaire on my laptop
• Knitting (which results in something fuzzy to wear)
• Watching Vampire Diaries/ The Originals (at least I'm not worrying about hybrid vampire/werewolves)
• Crocheting snowflakes
• Tuning my harp
• Making up ridiculous stories in my head.

Acting the Part: Emotions and Diabetes

Emotions and Diabetes.  Not my favorite topic.  Even before being diagnosed with diabetes, I was accused of being overly sensitive, overly emotional, chewing the scenery, being over the top.

Actors are a strange breed.  We train ourselves to be hypersensitive to every nuance.  What did you mean by that?  What is really going on?  We observe others, noticing slight variations in vocal inflection, stance, gesture.  We observe ourselves.  Where is my wrist, my foot, my shoulder?  On this word, what is the pitch, the pronunciation of this vowel, this consonant?  By opening night, it's become part of who we are under the lights, along with the costume, the makeup, the blocking and all those words.  The audience rarely notices, not consciously.  They aren't supposed to notice.  The art, the craft of theater is to construct an illusion so seamless that for the moment it seems real. 

We have another tradition, as well.  Outside problems are left outside: the fight we just had, worries and insecurities, illness and death are left behind once we cross that invisible line. 

I've been an actor longer than I've been a diabetic.  In fact, it was during a production of Mary Gallagher's Chocolate Cake (finally thin enough to believably play someone with an eating disorder) that I was diagnosed with LADA. Being an actor has helped me adapt to being diabetic.  Every performance is different. A line gets blown; the scenery falls down; the problem is solved and the show goes on. Each night we start again.  Act I, scene 1.  On this line, I stand here; on this I sit; here I give you my hand.  Striving for perfection, yet knowing I'll never attain it.   When the stage manager calls, "Ten minutes," I test my blood sugar, double-check my CGM and silence it.  After certain exits, I'll test again.  I know where my glucose tablets are stashed backstage.  It's all part of the discipline that creates the illusion.

Diabetics also live an illusion.  Everything is fine.  Everything's under control.  All I need to do is yada yada yada.  That and the double pirouette, the jump onto the table and, oh, yes, the sword fight at the end of scene 6.  Easy.  Effortless.  Hamlet performed on a high wire.  It's what the public demands.  It's what we deliver night after night after night, as long as this show runs.

Fin

Blood Tango

Blood Tango
by
Mary Fairweather Dexter

A daring dance we do
A dance of blood and death
Sharp steel piercing flesh
Red blossoms from fingertips
The hollow of my arm
The curve of my thigh

"You're not so sweet tonight."
Death beckons
Whispers
And with memories
Of iron lace balconies
Pulsating jazz
Throbbing tango
I drink
Sweetness running down my throat
To live once more