Without Envy for What?

I started this blog just over a year and a half ago by writing about Lia’s diagnosis and the challenges, fears and finally acceptance (or not) of living with the perplexity that is type 1 diabetes. I named the blog collectively as I did because that best describes the manner in which her mother and I want Lia to grow: without envy for those who don’t have this disease (a candid reader once pointed out that it could be read the other way: [my paraphrasing] “Without envy, indeed. After hearing about diabetes, who on earth would want it!”).

So, from the very first post to the entry marking our one year anniversary, I wrote — and we lived and breathed — in a way that allowed us to fold diabetes into the framework of our lives, not the other way around. But it has not been easy. Even now, it sometimes feels as if the struggle is all we talk about, with family, with friends, with one another. As if without envy were a premise and nothing more, a lofty achievement abandoned to a dimmer reality. That’s really not how we think about it, but the fact of the matter remains: Diabetes is worrisome, time consuming and often all-encompassing of our attention. It’s only natural that we talk about it, with anyone who will listen.

To be fair, we also talk about diet and food, about health and fitness, about achieving your dreams and living on less, about consumption versus sustainability. In fact, when I took time to think it through, it became apparent to me that the struggles and frustrations we’ve experienced with diabetes could be applied to just about anything. Money. Nurtition. Politics. Social issues. To be sure, the same care management tools for treating a health problem, individually and globally, involves each of these elements and many more, any of which could be, in the right circumstance, disabling.

That’s a roundabout way of saying there is so much more I could write about on Without Envy that I haven’t because of one reason or another, but mostly because writing about diabetes is hard. Way back when I wrote on Six Until Me that I felt “like a pilgrim setting out from our home… hoping to uncover proof that you can take charge of this beast and manage well”, I really had no idea what I was talking about. The word “pilgrim” alone implies someone on a journey toward some end. There is no end to diabetes. It is here and will be here for a very long while.

Which is why, beginning in September, I’ll write posts that seek to redefine the message and tagline of Without Envy: Raising a child with type 1 diabetes to live life to the fullest to include, and other things that make us happy.

More content. More frequency. More… (or is it, less) envy.

I hope you will join me.

Joyeux Anniversaire!

 

L’amour fait songer, vivre et croire.
Il a pour rechauffer le coeur,
Un rayon de plus que la gloire,
Et ce rayon c’est le bonheur !

                      –by Victor Hugo

Je t’aime, Franca

                         Love,  Steve

 

 

Too Little, Too Soon

In spite of her diabetes, for Lia, life is pretty simple. She loves to take walks up the road, fish off a dock, and she’ll still will occasionally host in her room a miniature tea party for two. If a person is kind to her, she’s kind to them back. She never says, “but it’s complicated”.

Riva Greenberg wrote an interesting piece earlier this summer (and which appeared last week at A Sweet Life) on a disappointing experience she had using a continuous glucose monitor, and it reminded me of our own brief and unhappy history with one of these hi-tech devices.

About eight months after Lia was diagnosed with T1 and only six weeks after going on the Animas Ping, our CDE suggested we give a “blind” CGMS a go. Franca and I agreed, after all, what in the world did we know about diabetes management. We were still wrestling with its very presence, and on top of that (disqualifier), we thought it’d be good information to have in helping us configure the settings and maximize the power of the pump. Unfortunately, it appears, heightened emotion and naivete are two sure signs that other than the experience of trying something new, very little good will come of the extra effort. Now we know.

For starters, the device was just too big. Lia hated it and its presence, in her mind, was inescapable. She could not forget it was there and so she scratched and scratched at the area, clawing her nails over and around the little contraption until she had managed to unplug, as it were, the business end of the monitor, rendering lost the last day or two of information, a fact anyone had failed to realize until the nurse at the endocrinologist’s office saw the missing days in the data, or rather failed to see the data. In our mind, even one second spent in discomfort or otherwise hampered by diabetes is one second too much. Strike One.

Though our endo’s office had assisted us in initially programming the pump’s settings — one carb ratio, one insulin sensitivity factor, three basal rates for a 24 hr. period — it became pretty much up to us to figure out how to fine tune them. Ignoring (for now) the gross dereliction of duty I now believe that was, setting up a pump is no simple small task, no matter how long you’ve had diabetes. Six weeks later we were still chasing numbers all over the place, correcting blood sugars day and night. The fact of the matter was, it was just too soon for us to be test driving the newest technology. Going to a pump from shots is not the same as say, switching from a stick to an automatic. We were still trying to figure out the complexities we already had. Were we ready to try a CGM? No way. Strike two.

And finally was the data itself. As this was a blind CGMS, the readings were not provided to us in real time. It wasn’t until two weeks later at our endo’s office we were finally able to see them. Without going back and comparing our logbook to the data the CGM spat out, there was no way to know if the thing was even calibrated correctly. For sixty bucks, I honestly expected more than that. End of story. Strike three.

Like Riva, Franca and I would really love to have a CGM in our corner. It’s something that should be in every parent’s corner. Taking care our children is hard enough without using all available resources. Unfortunately, we’re not looking to sign one up anytime soon, and it wouldn’t matter if we were, Lia’s experience turned her off the idea anyway. In her mind the rules just aren’t that complicated. Three strikes, you’re out is plenty enough.

The Garden Collapse

I mentioned the garden, or rather the garden’s collapse. It’s too bad. We had great plans for a marvelous harvest this year, as this photo clearly shows.

The Grand Arbor

That woodwork you see, other than the lattice, was hand cut, yes hand cut, from a recently felled Poplar tree and then crafted by Lia and me. Same with the trellises, which along with the planting areas were meticulously chosen and laid out to achieve the best possible plant growth. The way we garden, in fact, is quite a bit like the way we manage Lia’s diabetes. Planning down to the minutest of details. Keeping record. Envisioning a positive outcome.

For their safety and our sanity, we’d even made special arrangements during the most fragile stages of the growing season to quarantine one of the most formidable double agents a garden can know.

Quarantined!

Unfortunately, like diabetes, things don’t always turn out as planned and an eleven day absence on our end left the garden exposed to the herd of four legged creatures better known in our house as Venison and the garden suffered a fatal blow. (Side note: that marker is for Digger, the beloved dog I wrote about last week)

The culprit

The apocalypse?

As you can see, other than the arbor, there’s not a lot of green going on inside that fencerow. With the damage done, we unleashed the secondary echelon of crop destroyers and they saw the collapse to the bitter end.

And the Destroyers

There is a moral, I’m sure to this, some lesson I could take away connecting the dots in some logical fashion to the value of time and my attention. But I think I would rather view this year’s garden as not some agricultural failure but instead as a place of natural beauty and sustenance to those creatures with which we share our slice of the world.

After all, Fall and the hunting season are just around the corner.

Man vs. The Empire Brain Building

epiphany / iᴵpif ǝ ni/ n. pl – nies 1. a usually sudden manifestation or perception of the essential nature or meaning of something 2. an intuitive grasp of reality through something (as an event) usually simple and striking.
A shining forth
Aha!

In the summer writing classes I teach at a local university, I talk to the students of there being two epiphanies in storytelling. There is the one most people think of when you ask, which comes at the climax of the story when the characters must decide how to deal with whatever force is working against them. This is the point where we, the audience, are most riveted, as the suspense surrounding the character’s fate is at its most intense.

The second epiphany, which the author James Joyce pointed out and actually comes much earlier in the story, is the moment in which, through sensual detail, the deepest yearning of the main character becomes apparent. It is, to relate it in non-storybook terms, that moment when we suddenly realize that things aren’t exactly as they appeared and we’re brought to a change of heart.

It comes not without some effort, though. You mull and turn it over, you allude to it, catch a glimpse of it at the edge of your mind’s eye. Then you see it and the object falls into focus, and with it comes a deeper understanding. Of work, of one another. Of happiness. How we live and who we are. A catalogue, were it written, according to Joyce, of our most delicate and evanescent moments.

Diabetes can be like that, I think. The outlines are a little bit fuzzy, the colors washed-out, too many of the puzzle pieces are missing to form a wholly complete, perfect picture. The aha! moments, when they arrive, help us mostly to be better caregivers, but sometimes they come and you realize just how alone you are; but even those times are good, too, as you know beyond a shadow of doubt that doing better is up to you.

Because writers are meant to record, I offer here just a short list of D-epiphanies I’ve experienced in terms of treating Lia’s diabetes in this first year and a half. Some you may recognize from previous posts. Feel free to add your own in the comments.

  • Doctors are there to keep patients alive. Anything more than that’s up to you.
  • Passion is great. But don’t confuse passion with need. Before turning your attention to curing the disease, spend time learning to treat it.
  • Shots hurt. That’s why they’re called shots, dummy. It’s stupid to think that anyone can ever get used to them.
  • Most adults, no matter how many times you tell them a thing, hear what they want to hear.
  • Food can be our enemy.
  • Sometimes the road less envied produces the more spectacular journey.
  • Community. Community. Community.
  • How you do everything is how you do anything.
  • It is the experience of our hands that we learn from.
  • There is no bad mood that putting on your pajamas and taking a walk can’t fix.

Dog Days of Summer

A few years ago I wrote a story about a dog we owned named, Digger. The piece was for a local publication which every August ran a special “Dog Days of Summer” edition printing favorite pet stories submitted by their readers (you can read it here, if you’re interested). The story was, originally-enough, titled “Digger”, and centered around an account of a transatlantic flight the two of us took to Italy. But the story wasn’t about him. It was about me.

At the time, long ago, when it took place, I was twenty-nine years old, a jobless, war veteran and recently divorced, and the only thing certain of my immediate future was the fact that I was in store for a much needed change, starting with my address. As with any such endeavor there were challenges — as you can see if you followed the link — from the very moment the plane touched down, and what I learned about life in the months and years that followed this particular decision was that, unlike the reunion that takes place at the end of the “Digger” story, things never do quite go back to the way they were. There are histories to contend with, attitudes, beliefs, memories. Even were we able to successfully contend with those, also mudding the progress — or regress, as it were — is the fresh, undeniable reality of today, right now, this one very moment.

This summer brought a reminder of this, in many differing ways.

To begin, there was Diabetes Camp, a first for our family. The weeklong, must-do-ritual was for us all terrifying, exhilarating, liberating, nerve-wracking and totally life-changing. In a moment, I will tell you what it meant to Franca and me, but putting it into words for Lia is not only difficult but likely impossible for me, so I’ll just have to rely on a photo.

 

With Krista (and the dog, too!) visiting her grandmother that same week, the time Franca and I spent to ourselves was not only all of those things I mentioned above, but it was rejuvenating, too, to be alone, just the two of us, without kids, without errands, without TV and toys, without arranging play dates, sleepovers and otherwise attending to the rewarding, endless chores of parenting. And, yes, it was, for us at least, a break from diabetes.

I feel okay in saying that … taking a break from diabetes, though I know that Lia did not and will not ever, without a cure, enjoy the same freedom. I think were she to hear me say that, she might misconstrue my comment as, thankful for the break from her. But I trust when she is older, she will understand. Raising a child is demanding. Nothing in nature can duplicate the absolute pleasure or worry that being a parent employs. It is often what comes to define us, day in and day out, which is why our time alone together was so special to Franca and me. It helped us remember and relive who it was we both were before, before kids and before diabetes.

The week ended and we all came back together and picked up where we’d left off. Only we didn’t. Something had changed. Not everything, but some things. Lia, of course, was more independent, reaching new, unthinkable depths in terms of strength and confidence from living and breathing the camp battle cry, Positive Mental Attitude, with so many others just like her. Her spirit and courage are truly inspiring. Krista, too, had returned from grandma’s showing an air of young adulthood that wasn’t so much surprising as it was just delightful to see. With freshman year upon her, she is, I believe, exactly the person her mother and I always raised her to be. Happy. Smart. Trustworthy.

I, too, had changed, in a way I could not have predicted. For eighteen months, I had worked, wrote and read to learn all I could about diabetes and how best to take care of our daughter. With her gone to camp and the daily necessity temporarily lifted, I — and Franca, too — reveled in the way things used to be. So much so that when the vacation ended, I was left for a moment with a wishful longing that was both pointless and questionable.

How much had I let diabetes consume my time? Was I practicing what I was preaching: life without envy despite diabetes? Had I become a victim caretaker to this disease? After all, I had read about it, blogged about it, started a memoir about our first year living with it. I had researched the origins, the treatment, the science in search of a cure; constructed elaborate spreadsheets to help track Lia’s blood sugars; grown meticulous, alongside my wife, in keeping a log. We had volunteered our time, given money, advocated to Congress for change.

In doing all of this had I so fallen out of touch with who I was that five days alone with my wife felt like a once-in-a-lifetime, dream come true?

And what of my own writing, of the novels I had envisioned having published by now? And just as important, what message was my putting that promise on hold sending Lia and Krista? That pursuit of your passion is good until some reason to not comes along?

It shouldn’t be that way, but unfortunately that is, many would agree, the challenge to parenting, holding on to our individuality. It is harder still when the reality is that as parents of children with diabetes we are in a place we never for a moment imagined we’d be. Regardless the age of our children when  diagnosed, we do remember what life was like before diabetes. That is in all honesty a difficult thing to forget. But just as true is the fact that it’s here and setting one’s heart otherwise is a fool’s whimsical errand.

I don’t know what the right mix is, but it can’t be all or nothing. There is out there some happy middle ground, and it’s important to me that I find it. Maybe the key, now that I think about it, is what Digger so innocently demonstrated: There are some things we can control in this world and there are some things we can’t. In the end it’s not the who, what, where or why that defines us, but our actions and the love we have for one another, no matter the situation. Those are the same, or they should be. Perhaps it is our human nature to forget that. Thankfully, there are dogs, who remind us sometimes that all it takes is shrugging it off and climbing into a kind lap.

There is more I could say about our summer… the collapse of the garden and other pursuits of simple living, our consideration for finding a new endocrinologist, but I will save those for another day as I look to broaden the scope of discovering what exactly Life Without Envy means to me. For sure, it will be an interesting story.