Saturday, May 17, 2014

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

Friday, May 16, 2014

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.

Thursday, May 15, 2014

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.

Wednesday, May 14, 2014

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.


Tuesday, May 13, 2014

Blood Tango

Blood Tango
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
And with memories
Of iron lace balconies
Pulsating jazz
Throbbing tango
I drink
Sweetness running down my throat
To live once more

Monday, May 12, 2014

Changing the World

Changing the World
by Mary Fairweather Dexter

In scene 18 of The Sweet Lowdown, Howie Mouse says, "I'm all for progress, as long as nothing changes."  When I began writing the show, I naively wished it would change the world.  I was unprepared for how fiercely people would fight to maintain the myths and stereotypes.  Sometimes I felt  Howie wasn't the only one getting sucker-punched. 

The 100 Campaign calls for insulin for all: all Type 1s that is.  Other campaigns call for awareness, a  new name, so the innocent aren't lumped into that other category.  You know the one.  Those diabetics.  The ones who ignored the warning signs.  The ones who asked for it.  In the documentaries, news stories, media blitzes, they are faceless.  A huge slouching belly slinking toward self-made hell. 

During the year and a half I spent doing the research behind The Sweet Lowdown, I met a lot of people, heard a lot of stories, but I never met anyone who awoke one morning and said, "What I really want in life is to have diabetes."  Fame, fortune, a white convertible, maybe.  Not a malfunctioning endocrine system.

Frederick Banting intended insulin to be available to all who need it.  His most famous patients were the children of the wealthy and powerful, Elizabeth Hughes and Leonard Thompson, but we don't hear about Banting's friend Dr. Joe Gilchrist, who developed diabetes while Banting was doing his experiments, or of all the men at Christie Street Hospital for Returning Soldiers.  Were these unnamed men T1 or T2?  No one knows.  Banting didn't care.  They needed insulin.  He made sure they got it.

Yet, almost 100 years later, many of us still fight for our insulin prescription, fight to prove that we deserve this life-saving fluid.  Cute little kids in far-off lands, everyone agrees they should be saved.  But not-so-cute adults in not-so-well-off parts of this country?  It makes some feel better to believe those people got what they deserved.  It was that Coke they drank, that donut they ate, not beta cells and mitochondria. 

How can we fight so hard and find ourselves slipping back through the centuries?  Can anyone change the world?

During one performance, I walked out onstage to find myself flanked.  CDE's and endocrinologists from one local HMO seated on one side of the stage.  CDE's and endocrinologists from their rival HMO seated on the opposite side.  After the show closed, a few months later, I nervously visited my endocrinologist, wondering what the price would be for my daring.

For the first time, I wasn't asked what I was doing wrong.  I wasn't asked what I'd eaten that I shouldn't have dared to eat.  I wasn't told if I just ate less, exercised more and figured out the perfect timing and insulin and behavior.... Instead, for the first time, we talked about what my pancreas is doing now as opposed to what it did ten years ago and how complicated and contrary this disease can be.

Change comes slowly, often imperceptibly.  Someone's eyes are opened.  Slowly one person, then another begins to move a few degrees off course.  And another follows.