A New Utopia

Of changes we have seen plenty. My writing here documents most of them, those both good and bad, welcomed and unwelcomed, short-lived and long. But the one change I haven’t written much about is the one I hope is most evident and feel most strongly affected by and that’s empathy and effort. Okay, that’s two, but bear with me here, because really what more is the first when not shared with the latter but a singular, self-contained feeling. Empathy alone is only fulfilling half its potential. The capacity to put yourself in someone else’s shoes works best when it results in some meaning action.

It used to be my idea of utopia was forty acres of land and a house smack dab in the middle of it. Cordoned off in such way from what I perceived was a complacent, self-interested society poles apart from where I stood, I could live with my family in relative peace and quiet, pursing that one thing I felt above all would bring us me the most joy: my privacy. Living, in other words, in complacency and with my self-interest.

How could this be? I was no different than those I was wanting to shield myself from. In fact I was worse because I had the gall to deny it. I had a job. I had money. I had things. I had a voice, and when things didn’t go my way, I got mad as hell and retreated to my corner. I also was very unhappy, though unhappiness in and of itself is easy to conceal. It’s hidden all the time through the food we eat, shopping, big houses. Maybe content is the better word.

I am not suggesting that diabetes changed all that. It certainly helped (when I was done being angry about it). But I believe it began sometime sooner, a slow chipping away, if you will, of my very un-empathic exterior by the loving, steady, compassionate and utterly amazing life force that is my wife. She has always had, from the moment I’ve known her, a champion’s perspective for those less fortunate. What Lia’s diagnosis added to her efforts was a new level of urgency. This was not some nameless, faceless person I had to put myself in the shoes of, this was my daughter.

Looking through her eyes, imaging her future, her relationships, her connectivity to the world, I see a world in much need of help, and I’m not speaking of a cure, of better treatment, or awareness. I’m speaking of the struggles people face everyday, some like her, who must evaluate the many aspects of daily life that the rest of us may take for granted and then filter them through an alien, unpreventable, unwarranted, and often invisible condition. And yet. And yet as she gets older and settles into the real Her, I see a young person who is ready, willing and able to put her own self in another’s shoes and share in the emotion of their experience. To better understand them and when possible offer help. Empathy in action, that’s the biggest and brightest change diabetes has delivered upon us me.

And My Hero Is…

The overdue final chapter of Diabetes Blog Week. This from the champ herself:

 

My heroes are my mom and my dad. They’re my heroes because they help me through type one diabetes. Also, because they make me feel special. They do that just by talking to me. Just a few people do that at school and anywhere else. I’m glad that they are my parents because then I wouldn’t be able to tell them how big a difference they are in my life. I don’t know where I would be at the moment if I didn’t know them. They’re my hero because they care about me and they love me. And I love them, too.

 

 

You Should Know

Day 5 of Diabetes Blog Week. The topic: What is one thing you would tell someone who doesn’t have diabetes about living with diabetes?

 

This is a hard one for me. But it shouldn’t be. If you’ve followed my writing at all, you know with what vigor, emotion and honesty I’ve sought to unearth and define for myself—and for others—so many of the deep, troubling aspects of living with diabetes. I’m talking beyond the mechanics of blood sugar checks and carb counting, beyond IVs and Christmases spent in the hospital. Beyond shots and bruises and tender, hurt feelings.

These are things I never understood about myself or about life or creed or my family and the people I love. Tiny outlooks. Perceptions. Conclusions. Sentiments both large and small that arrived not at the end of some long and incredible journey as perhaps I once eluded, but which sank in slowly, over time, in the face of a mountain of resistance and struggles against them, turning them away, begging them leave us—leave her—alone. At some point there is nothing left to do but embrace them because they are all there is in this world and all there ever will be until such time as things change. And they will, one day.

Life is a revolving door. Attitudes come, attitudes go. We, too, change. We learn. We grow. We rise to the call. And I suppose if there is but one thing I would say to someone about what it is like to life with diabetes it would be that. It is a vocation, a duty, an occupation that knows no end, no weekend, no holidays, no worry-free golden years. From others it beseeches consideration, understanding, and for some: devotion, loyalty and a faithfulness that anything in life is possible with love.

Say No More

Today’s topic on Diabetes Blog Week is to write about our Fantasy Diabetes Device. The one item we’d love to see developed to make the care and treatment of diabetes better, easier, simpler, less painful. You name it. The sky’s the limit. Here is my fanciful wish:

 

Say no more

 

Say no more,
Say no more.

These are pretty neat things,
I would say if I’m asked,
And the things that they do
Well…they seem up to the task.

But if I had my way,
I would tell you this much,
I would toss out those names
In one alphabet bunch.

I’d start over from scratch, with every last one.
I’d make it my job… dare I say, my mission
That every last one of those needful devices,
Would get a new name…a kinder edition.

Take Test Strip for instance…just for example,
After a spin through the Name Fixer-Upper,
The word it spits out so cheerfully better.
Now call it a Bodiddly Beandip Whopper?

Or look at this meter and alcohol swab,
Down the word chute they go… now up on the lever
The names that pop up on this dandy Name Namer
Could be Bartle or Bob and a Cootie-free Cleaner.

And who ever heard of an infusion set,
Who didn’t think first and foremost about it,
That an object of such animosity
Would serve us much better if we just called it Mit.

Finally there’s a thing called an Animas Ping—
Wait a minute just now… that’s not really so bad.
But pairing it up with the surname One Touch?
How about we lighten it up with Do-dad.

I hope you see now, it all makes perfect sense,
A machine that names names without any offense.
There is one more item I feel is amiss
Instead of a painfully sharp pointy prick,
I wish lancets would render a butterfly kiss.

Hulk Smash

Yesterday I wrote about Franca and Lia and their strength and indomitable spirit to stare down the maw of diabetes no matter what, any day of the week, standing firm behind the motto: You want a fight? Bring it. For day 3 of Diabetes D-Blog Week the focus shifts to development, a topic for which I will turn the attention to me.

I am by no means a tinkerer. I have no patience for the preciseness it usually requires and would rather do just about anything than spend my time fine-tuning, adjusting, or otherwise engaged in the activity of repair. For me, playing the guitar (if that’s even what I should call it) is about as much experimentation as I care to do. Life, I believe, is to be lived, not calibrated. Besides, my Dad didn’t know how to fix shit and never taught me and so despite my collection of sockets, screwdrivers and power tools, I’d just as soon leave them in the packaging they came in. As it is for the most part, they’re just cluttering up the garage. If something is broken or out of tune, my preference, or should I say, my skills would lend to smash it and start over.

But if anything taking control of diabetes requires a good bit of routine and extra fine-tuning, let’s call it D-regulation (don’t say I never reach across the aisle). The things that can and should be governed are as confusing as they must sound to someone unfamiliar with diabetes. Total Daily Dose. Insulin to Carb Ratio. Correction Factor. Twenty-four hour basals. Insulin on Board. And so on and so forth. Each of these  elements weighs heavily on just how effective we are at managing Lia’s blood sugars. Changing the settings of just one of them could mean the difference between this (thereabouts):

______________________________

or this:

Engineering all those factors to obtain level blood sugars depends upon the precise application of tiny little tweaks, not smashing. You make one little change to just one of those elements (not six), wait a few days and see what happens. Didn’t get the results you wanted or expected? Make another little tweak, wait some more. It should feel like you’ve gone back in time and are trying to tune in a television station by ever so slightly adjusting the antennae rabbit years, not banging the crap out of the side of the box.

With diabetes I’ve got to change my attitude and techniques. Lia is ten now. Next year she wants to do cross country. Then her teen years are fast approaching. Smashing won’t work. Smashing will work against us. It’s time the Hulk in me developed a little more patience.

Delightful Survivors

The rigid person is a disciple of death;
The soft, supple and delicate are lovers of life.
                                –Tao Te Ching

 

For Diabetes D-Blog Week Day 2 the topic is to tell about one diabetes thing that we do especially well. So rather than go this one alone, I enlisted some help over dinner last night and what we came up with were a number of things we felt pretty safe bragging about—making good food choices, checking blood sugars regularly, working to understand her diabetes better—but all of us agreed at the tip-pity top of the totem pole is Lia’s own self control.

She has her mother to thank for that. I am much better at keeping my cool in a dire emergency, but Franca—and by pedigree, Lia—have true survivor mentalities. They are humble, gracious and love to laugh. They believe in themselves and live in the present. The decisions they make are simultaneously bold and cautious.

Diabetes is hard on a little kid. No, that’s not quite right. Hard is something you do, like sprinting or moving a piano. Putting up tobacco, now that’s hard. Living with diabetes is galaxies beyond hard. The word hasn’t been invented yet to describe this disease for a little person. Arduous. Demanding. Complicated. These simply don’t stand up to the job.

In fact, hard is the word I’d use to describe Lia, not diabetes. Hard as in: firm in her convictions, whose spirit is not easily broken. Someone who meets each day head on with humor, diligence and earnest. That’s Lia. The one who is able to come home from school not in tears, but smiling incredulously with a story to tell of her teacher who in passing out bars of chocolate to the students came to her and said, “I know you can’t have this, but maybe your sister can enjoy it.” Or who during a critical moment of a pump site change on her derriere says to her mom, who is kneeled down behind her about to release the needle, “Wait, can you move your face away a minute” because she has to fart.

Managing diabetes is an enormous, endless task, like cutting tobacco every day of your life, but it is really no match for a will and personality that are as strong and delightful as that of my lovely daughter and her stoic mother.