MY OWN KIND OF DEATH SENTANCE

My definition of a good day: Wake up, put on bathing suit, shorts. If you can make it through the day w/o having to put on shoes or a shirt, it has been a good day.  So when I first saw my endo in his white orthopedic shoes I wondered how long it had been since he has had a good day.

He talked w/ my mom and gave me the Intro to Diabetes lecture, had me practice on an orange and then he handed me my own kind of death sentence.  He told me that now that I was a diabetic I could never walk barefoot, and flip-flops were definitely out of the question.  He said the moment I got out of bed in the morning my bare feet were never to touch the ground.  Gone was the slightly gritty feeling of the deck of a sailboat beneath my feet and the feeling of sand sifting through my toes. No more hopping from white line to white line in the parking lot in the middle of summer to avoid burning my feet.  My happy-go-lucky future was now strapped down and buried beneath my summertime nemesis, the dreaded shoe.  And I couldn’t even get away with going to my old standby when society demanded some sort of footwear, the go-ahead as Captain Jack calls them.

Luckily for me, I have a streak, strong and wide, of rebellion.  And so that 1 piece of advice I ignore.  I ignore it just about every morning when I get up in the morning to feel the cold, always somewhat sandy, hardwood floor beneath my bed.  I ignore it before every surf as I walk across the parking lot and then the sand with all its hidden glass-shard landmines and I ignore it every time I throw on a pair of heels when I go out with Tony (Heels were outlawed by Doc Killjoy because they might hurt? How a man could outlaw heels is beyond me, weren’t they invented and propagated my man after man after man?)

In this fight against diabetes you have to pick your advice carefully.  You do your best and forget the rest.  For me that was refusing to condemn my feet to the sensationless dark holes that we all call shoes.

 

Fish Tacos

 So, as I sit to write over my fish taco lunch, I start to calculate. Just how many fish tacos have I had in the last 13 years? 5000 maybe?  10,000?  I was introduced to this culinary masterpiece in February of my freshman year at UCSD.   My friend Aaron was already hooked.  I would tease him for eating this monstrosity, until the day he challenged me with the magic words that were, and still are, my achilles heel, "You can't knock it until you try it."  It always played against my pride.  I needed to be right about the fact that fried fish just shouldn't be wrapped in a tortilla and called a taco.  It's just plain wrong. So to prove my superior intellect, I needed to try it so I could knock it legitimately.  I did.  Unfortunately for my pride, I was hooked, too. And I sucked at admitting it, especially to Aaron.
     For a while the only fish I would eat was a Rubio's fish taco and the halibut Aaron would catch out of some stream somewhere.  We'd bar-b-que it up and eat it right out of the pan. Every other version of fish was, and still is, just plain wrong.  And so it was... long run on Tuesday, get cleaned up, 2 fish tacos and a coke for me, a Corona for Aaron and off to Bible study (and, yes, I see the irony of a Corona before Bible study, but that's a story for another time.)
    The fish taco soon became my rock.  It was the only meal where I knew what it would do to my blood sugars.  Always 5.0 units for 2 tacos, side of beans, side of chips.  And like clockwork my b.s. would flatline.  Whenever food became my nemesis and all else was crazy, I could depend on a #1 combo and 5.0 units of insulin. Always.  Rubio's soon became my place.  I would study there, write there, hang with friends there.  I suppose it was fitting, then, that when I started to date Tony, he was working there.  I'm sure the 50% off tacos helped his case.  It was in the parking lot after a plate of fish tacos that I told him I wanted to date and soon marry after he long pursued me.
      It was, also, over a plate of fish tacos that I had my first meal with another diabetic.  For 12 long years my only conversations with other diabetics were the 10 second kind when you see a pump hanging off someone's belt in the grocery store.  Excuse me, I saw your pump.  Are you a diabetic, too?  Yep.  Cool.  And you?  Yep.  Cool.
     And so it was that I picked Rubio's to mark this momentous occasion.  It started out like most meals--order, sit, small talk.  You study theology (note my John Piper book on the table)? Yep. Cool.--until the guy across the table asked me how many carbs I thought were in his taco.  At first, I had no idea what he was talking about.  Maybe because a fish taco equals 2.0 units.  Like it was written somewhere in the heavens, fish taco equals 2.0 units. How could he not know.  And then the question was so foreign because the only time I heard that voice was inside my head.  How much insulin is that, is that carb laden with hidden fat, exactly how many pretzels did I eat, how big is a medium apple? It was like being in a Sci-Fi movie where they could project your thoughts on a big movie screen for everyone to see.  The conversation I had been having with myself for 12 years was suddenly out in the open, out for all to see and grade.
      I think I must have looked like an idiot because I stumbled over my words for so long while I processed the novelty of this all.  When I had finally reached an answer of fish taco equals 2.0 units, I realized that that was only true in my body. Maybe not in his.  And that's the truly tricky thing about diabetes, what works for me probably doesn't work for the diabetic next to me.  Wouldn't it be great to have a book ( or maybe an iPhone widget) that had all the dosing for every food made.  Fish taco 2.0 units, turkey sandwich 2.0 units, triple scoop of ice cream with two tablespoons hot fudge 7.0 units.  But since it would never work for everyone, I think most of us have to come up with our own dosing book.  Problem is, it only seems to work on days whose dates are prime numbers or are perfect squares.  All other days, all bets are off.  Whether stress, exercise, lack of sleep, or finding a new love, it all screws up everything.  Its like trying to take a math test without all the problems written out.

#1  4  x 2 =                     Oh, that's easy, it's 2.

#2  14 x    =                    How could I possibly know the answer to that with out knowing what to multiply by.  I can make an educated guess (well, the prof. hasn't used 7 yet, maybe that's it.  Or then again maybe the prof.'s superstitious and won't use the number 7 for fear of being hit by a falling piano.) 
     Now, I do have some pretty cool tools, but until I get a Stress-O-Meter and a Just-How-Hard-Was-That-Last-Workout-O-Meter, I'm at best guesstimating.  Which is why I'm so often off.  It makes me sit in amazement at the splendor of the human body and all it does.  That's some good computer programming it got at birth to be able to solve that equation in 10 variables correctly every minute of every day.
     So with all the complexity and unknown variables I have to deal with, I guess I am doing a pretty good job.  Even when I'm not doing "as well as I used to do." I should probably cut myself some slack.0  It is, after all, a pretty gnarly equation.

Low Again...

Even as I sit to write, I am struck yet again with a low (just overzealous to correct a high, fueled by my general frustration with this whole diabetes thing) so my brain just cannot get into that writing place.

The Middle

     ENTER INSULIN PUMP:  For the first time in over a year, I actually got hungry.  And it was such a foreign feeling.  How odd is that, that such a basic human feeling, one that a baby can feel immediately after birth, was so foreign to me.  I actually would go without eating for a few hours just to feel it again.  And I somehow felt a little more human, more while, more "fixed".   
     Of course, that was short lived because for the next 10 or so years it became all I felt.  Eat 8 a.m., 8:30 high b.s., feel munchy, be thinking about when the next time was that I could eat.  Even a Thanksgiving feast couldn't turn on the full signal.  I could eat 3 plates of food and I just couldn't get that over-full feeling.  I became jealous of my relatives, lying on the sofa, moaning in pain because they ate too much. 
  But life did become a little more normal.  No longer was I sneaking off to the bathroom to shoot up during a dinner at a restaurant with friends.  I didn't have to plan my life around that first shot in the morning.  I could eat when I wanted and exercise on a moments notice.  I got one step closer to that carefree life of my youth.  Except for the fact that I was now attached to something, and every 3 days I had to refuel it, and bring extra supplies, and...

The Beginnings

I remember a time before Diabetes when I ate because I was hungry and the only crashing I did was from playing too hard and having too much fun.  I had 19 great years of ignorance of the complicated life and incredible intelligence of my hard-working pancreas. And then it was over...
      ENTER DIABETES: I now eat because "it is time."  The insulin that I gave myself at 8a.m. has peaked and I must match its somewhat unpredictable peak with the appropriate balance of carbs and protein or my numbers will be off and I have gotten back another F on my most recent "pop quiz."  I was never one who wanted a schedule.  I don't want to know by 6 a.m. what I'll be doing at 3 that afternoon.  You know, a "never know where life's going to take you" kind of person.  Be able to leave on a moments notice to go do anything- not even pack a bag.  When I was 14 I tried to wear contact lenses because I hated glasses.  I just couldn't get used to it because you have to bring a case and solution with you everywhere in case something gets in your contact lens.  There was no way I was going to have to bring something with me everywhere I went.  
     Fast forward 5 years- Pump, kit (i.e. wallet with built in meter, strips, lancing device, Sympen, extra needles, 2 extra batteries for the meter, 1 for the pump), and diabetes I.D. to explain to whoever finds me passed out why I'm lying face down on aisle 2 of Vons in front of the Gatorade not able to get sugar because I can't, in my 32 induced stupor, figure out which flavor to rip off the shelf and down in 2 seconds.  And That's just the daily stuff I carry with me, not the stashes I have everywhere -- 2 kits at work (1 in the emergency ditch bag, 1 in the desk) in both cars, almost every backpack I own, and a virtual pharmacy at my parents house for when we visit.  Oh and my back-stock of pump/meter supplies that takes up more space in my closet than my paltry wardrobe.  So much for the simple, carefree, spontaneous life of my PreD youth.
     The worst was sitting down to a prescribed meal at a prescribed "meal time", not being hungry, and having to force down a whole meal so I wouldn't get low.  Or after a bunch of highs, trying to force down food between tears because I knew the very thing that was saving my life when I was low was also the thing that was slowly and methodically killing me, or at least working hard at building up some gangrene to steal my left leg and right pinkie finger and throwing in some blindness for fun.  Or having to choose between choking down bite after bite of poison or waiting until I got low and then having to drink my poisonous lifesaver.  And me, being the lunatic I am, couldn't wrap my brain around this concept, so I waded in it up to my chest and splashed around, all the while, making slow progress to finish my 3-day leftover lasagna that had been shoved in the freezer 2 weeks earlier (hey, I was a poor, culinarily challenged college student trying to stretch a buck, what can I say.)

DISCLAIMER

This is not an upbeat, encouraging page of how great I am managing my diabetes.  I think I've gotten to the place in my life where I am either too tired, too lazy, or too cynical to put on the brave face, or the happy face, or the "what are you talking about, I have no problems?" face.  I think so often we try so hard to be good that we forget to show other people our faults.  We sit in a group of people who all have on their 'good face' and we think we must be so weird, so jacked up, to be struggling, because everyone else has it so together.  And everyone else is sitting, thinking the very same thing.  But, I would never know it because we're all trying so hard.  So I've resolved not to try so hard.  I've accepted that I suck at diabetes and that's okay.  It is a disease and IT SUCKS!!  It complicates everything.  And yes, it has added so much to my life and we can control it and it probably won't be the thing to kill us and I'm sure I'll get to all that good stuff too, but certainly not to the exclusion of its suckiness (and, believe me, there is a ton of suckiness.)  
    But, I've always said I want to have a good life.  Not an easy life, but a good one.  It's the pain and hardship that deepen and enrich our ability to experience the love and joy more thoroughly.  I guess that includes diabetes.  So, look, if it's real and I see it, it's here.   (But, I'm not beyond fictionalizing when it seems necessary)

The Start

I don't feign myself a writer.  Although I suppose I might have turned out to be one, the daughter of an author and a Literature teacher.  I suppose maybe science and math were my own little rebellion.  But of late I have been inspired by an author and a couple of good songwriters, whose writings seem so simple and understated, that I was at once reminded of the pure joy of childhood and first loves.  It is that which I want to do here.    To find the joy and simplicity of a life lived in the midst of diabetes.