a favorite

It’s Day 6 of Diabetes Blog Week and we’re asked to share a favorite sentence or blog post from our writing. Though there are a number I could select—specifically any of those tagged, The First Year—I settled on one from a post titled External Genetistry, published eleven months after Lia’s diagnosis. In it, you can see I am still wrestling with the demons of her diagnosis but I am also beginning to scrap together the sentiments of acceptance, optimism, and action that continue to grow and take shape:

You could look into your own heart and listen to what it was saying to you only after her blood sugar had been taken and the insulin administered because it was then you felt the safest; you’d done what you needed to take care of her and so this was the best time to surrender to it with little worry of there arising any immediate problems. But you put yourself in jeopardy if you allowed yourself to stay in that one place too long. We were new to the whole operation and things could go wrong, sometimes quickly, so it was important not to forget that the requirement of any situation, good or bad, is not what you find in your hearts but how what is there turns to action.

 

 

Eating, the Best Part of Our Day

I am going to cheat today, day 5 of Diabetes Blog Week, but not because I don’t find this topic engaging. If anything, in our house, food is the only subject worth discussing everyday. And we do, starting on Saturday or Sunday when we plan out our next week’s menu, which is almost always home cooked and almost always has a Mediterranean flair to it (lately the centerpiece has been chick peas, but if I had to choose a favorite dish, I’d pick a pan-roasted Harissa chicken cooked in a cast iron skil—See what I mean, I promised myself I wouldn’t talk about food and here I am talking about it. Some things can’t, and shouldn’t, be helped, I guess. Email me if you have time today or any day to talk about food. Franca and are I always willing!

Instead what I’d like to do is share a post from the past, the one in which Franca shared her recipe for baking bread. Bread is one of those items that will dress up any meal. Toasted and then rubbed with garlic, a shot of olive oil and some salt, and presto, Bruschetta. Makes it feel like you’re dining in Sicily, especially if you add a glass of Chianti (which may or may not also be homemade. Ahem).Stanca Wine

The recipe Franca shares here has changed a bit since then (as has the kitchen and mixer), but to be sure whatever ingredients you use at home will be better than the periodic table list of crap found on a store-bought bag of bread. The biggest item that has changed is we no longer use gluten to beef up the whole wheat flour and the flour we use (called Montana Prairie Gold) we source locally. If you can’t find that in your neighbor then King Arthur is an excellent alternative. The point here is that whenever you make at home, it tastes better and is usually better for you.

Here’s the link to the original post— homemade bread and the video, which is always brings a laugh at our house, except out of Franca, who only stands and with a disapproving purse of her lips, shakes her head.

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.

D-stuff

We have too much stuff, we know that. It exposes itself slow and daring, like a neighborhood pervert, every time we open the garage door, and when cornered, let’s say in a closet, it cowers behind nicer things, using camouflage, guilt and association to spare it from being tossed it out. We find it lurking in cupboards, in drawers, every time we sit down at the desk. It looms over us from walls, from bindings on bookshelves, and always from under the bed, tormenting us like a steely eyed monster. Go ahead, it says, I fucking dare you.

And we pull back our paw and we pause and we say to our tormented self: Under the bed isn’t really the problem, the damn problem lives up in the attic.

But the attic has stairs and a door and we really can’t give it the time it will take to sit down and wrestle with that, so we go on about our day and the stuff. just. lingers.

So it is with our supply cabinet, too. In there you’d find every blood glucose meter ever offered to us, every insulin pen, every pricker. You’d find adhesive wipes, alcohol wipes and some other wipe that utterly seems to have no purpose. There are boxes of test strips, of cartridges and infusion sets…and speaking of infusion sets we own a growing collection of leftover tubing, though why it’s leftover I haven’t a clue, it’s not like it isn’t required.

And of the One Thing we require over all, our level of hoarding is much worse, because imagine the ensuing calamity if suddenly our insulin maker experienced a Blue Bell moment and production were suddenly ceased. That’s no problem with a seven month supply of it tucked neatly away in the fridge (note: I know that, too, can be a problem, but I won’t let myself think of that, just as I wouldn’t consider what could happen during a world-wide doomsday event. Sorry, Doomsday, but fuck off).

But seriously, it’s easy to see how we can let it grow out of control. Our minds start to think: what if that, what if this. Maybe so, maybe not. And so we hold on tight to it, just in case. I’m starting to think there’s a better way. Might someone else not benefit by taking that monster of stuff and find for it a new home? Well maybe not for that garage-locked pervert, but for most things that are, you bet. That’s especially true of all those extra diabetes supplies, because who knows, somewhere out there might be a like-minded, minimalist hoarder wondering what on earth they’re going to do with all their mysteriously tubeless infusion sets.

Mums the Word

In the beginning when it was 90% us and 10% Lia in charge of managing her diabetes, we would tell everyone we knew about it. Tell her teachers, of course, and her coaches and the school administrators, the people she carpooled with. Tell her friends, tell their parents. Tell the neighbors to either side of us. We’d tell family and friends near and far, then remind them again and again and again and when we made new friends we’d tell them too. We’d tell strangers. Servers. Folks working behind counters. We’d corner parents at birthday parties, unsuspecting adults who were not brought up to think that swinging around from a trapeze bar could be anything else but fun. We knew differently though, or were starting to know differently, but because we were just starting out and it was just the two of us, we felt so completely inadequate. So we’d share: Lia has diabetes.

That’s usually how we began, or some slight variation of that. Lia has diabetes. And they’d look at you and frown or apologize and we’d go on because we weren’t seeking their pity but their watchfulness. We’d tell them what exactly that meant, to have diabetes, about blood sugar and insulin and carbs. Maybe some mention of her pancreas. We’d tell them of highs and lows, and perhaps, depending on the role they played in Lia’s life, a few dangers to be on the lookout for. No one ever had to use any of the information we shared, at least not on the level of why we were sharing it, to prevent an emergency. Nonetheless, we felt better.

Then one day not long ago we were out backpacking and ran into a gentleman on the trail who worked for a company we recognize locally as being a strong supporter of diabetes. Franca mentioned that Lia has diabetes and immediately regretted it. I did, too, though it was something we’d shared a hundred times before. What we had both realized, then and there, this five years later, was that we are not new to diabetes and the division is not 90/10, but more like 20/80 and Lia is in charge and if she is in charge, it only seems natural that she should determine who knows about her diabetes.

But it is a big deal for a parent to let go, and though the world is kind in that it happens in small increments, there is still that feeling that no one, not even Lia herself, will be as vigilant as her Mom and I. Our hearts though say it’s time we start believing.

Heroes and Heroines

I must admit, this caught me by surprise today. I wasn’t prepared when I learned that it was Blog Week and considered sharing on Without Envy. To be honest, I’m not even sure why I keep the site out there, other than perhaps as a written reminder of what life was like back then in those beclouded, long days in the weeks and months right after Lia’s diagnosis. Sure, maybe it still serves some purpose for others and maybe it will one day, too, for Lia. I don’t know. I know though that whenever it crosses my mind, which is often, I am filled with a bit of regret, just as I would over having lost touch with a good friend who had helped me through a difficult time. If enough time between visits has passsed you’re left to wonder: where even to begin?

And so you don’t.

And I haven’t.

But maybe this week, that will change. Maybe this week, I’ll pop on over and sit down for a bit and visit. Catch up for old time’s sake, you know.

For sure there’s not much new to say. We are older, smarter, and for the most part hardened by it all. In that way, Without Envy has served its purpose. After all, how often can you, or should you, seek to illuminate what appears to have become normal? As often as you like, by God, you might say, and that would be true, you can and you should because what is normal to one may be unusual to another. But damn if there’s not a peacefulness to acceptance. Something softens around the edges, there’s a quiet that needs no words. That is where we are and where we have been. Enduring diabetes with grit and composure, and with tolerance, yes, always with tolerance for it won’t ever just go away and so we stand as we must and we greet every day with a stick in one hand and a bouquet of flowers in the other because you never know which one you will need.

What I was reminded of today when I read about Diabetes Blogweek is that we are not and have never been alone in our undertaking. There has always been someone to stand alongside us and calm our fears, reassure us and help us understand that there is nothing that Lia can’t do. Other readers, writers, heroes and heroines, moms and dads, sons and daughters. Considerate, caring people who have proven again and again that case to be true. So thank you. It’s so good to see you again.