At A Glance

Back now to the daily opus of attention paid Lia’s diabetes. Her wellness of course is always on our minds and as such our strategy in treating the disease is simple: be open to anything that will multiply our opportunities to know it, treat it, and deal with it better emotionally, mentally, and physically.

So last week we took full advantage of a four day test run on the iPro Continuous Glucose reader from Medtronic. This is a small device, shaped like a horseshoe crab but much smaller, about two inches in length, that attaches to the skin and continually captures blood sugar readings, while the person with diabetes goes about their normal routine. At the end of the test period, the CGM is removed and the data downloaded to a computer, where it is analyzed and compared against other collected information such as exercise, food and insulin intake, so that patterns of glucose fluctuations can be marked and adjustments made to the diabetes care plan.

Though we don’t have the data yet and cannot attest to its usefulness, the alternative testing to CGMS involves skipping meals and/or testing each hour for four to five hours, making bolus or basal adjustments, and retesting. Not something Lia or anyone else in the house was too excited to undertake. So at our last quarterly checkup we asked about the CGMS. The staff supported it and a month later she was outfitted (the tape was the worse part of it; see a few poorly shot photos here).

Outside of the obvious interest in learning more about how Lia’s blood sugars behave throughout the day, is how we all sleep at night, or don’t as the case may be. That last comment will ring very familiar with some, but to others I should explain. To do that I’ll need to backtrack.

I mentioned before our eagerness to learn all that we can about Lia’s diabetes. That’s true in every aspect of her care but one: Nighttime lows, which makes little sense when you consider that during the waking part of the day someone is always with her. Should we not be more concerned of those times when someone is not?

But other than arming ourselves with an understanding of the likely causes, nighttime hypoglycemia remains a weak link in our armor against diabetes. I don’t know why that is. It may have to do with fear (here’s an excellent  post about fear); or it could be that ignorance is truly bliss and to be any wiser is folly. After all, isn’t our world affected enough with the knowledge that lows can and do happen, anytime day or night, and the consequences can be fatal? Is that not all the call that is needed to get one of us up once or twice after dark to check Lia’s blood sugar levels? Would any more general knowledge — frequencies of occurrence, tales of courage or loss, the likelihood that Lia would wake on her own if she happens to go low, or even a computer-generated chart of her nighttime averages — give us the prudence to sleep straight through?

It is probably not information that would be wasted. It would be rare if that were the case. The treatment of diabetes is a lot like fighting a war: to avert disaster, know your enemy and know yourself. But is a four day clinical test substantial enough to put to rest any worry?

At a data-collected glance, the most challenge we have with her blood glucose levels are just before she goes to bed. Most of her meter readings — seventy-five percent last week, including those taken at two a.m. — are in range. There was only one case of hypoglycemia and it was minor and could be easily explained (incorrect bolus at breakfast time). She wakes most mornings within a few points of her target.

So maybe our worry is unwarranted. Maybe we’re losing sleep over nothing. Our bodies and sometimes our minds scream out: Yes, yes, you are. But our hearts cry something other.

The security of knowing first-hand, of really knowing that she is safe and sound is a thing no parent can truly relinquish, not to stories or knowledge or detailed computerized data.

Fear sometimes is impossible to let go, regardless how much you know.

In Any Kind of Weather

Simplicity, simplicity, simplicity!  I say, let your affairs be as two or three, and not a hundred or a thousand … Simplify, simplify

— Henry David Thoreau

But where do you begin? What does more, not less, community look like? Who do you turn to in shaping alliances that will make for a simpler, more coherent, reliable and fulfilling future for ourselves and our children? How does our health, our financial well-being and our values add or take away from the sum of those remedies.

Getting to those answers may require a new way of thinking, at least for me it might, but even then when I break the concept of community down to its most trouble-free form the task sounds almost too easy, Food Rules easy: Make friends. Keep them close. Do good things for one another.

Of course, you don’t have to be a recluse (or a troglodytic writer) to make more of it than that.

Take Thoreau for instance. In his own words: “I lived alone, in the woods, a mile from any neighbor, in a house which I had built myself.” Later he tells why. “I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover I had not lived.” And yet… “I had three chairs in my house; one for solitude, two for friendship, three for society.”

That is a form of community I can grasp. Personal, precise, and practical.

When I think back forty years to when I was a child living first in the mid-west, then the southeast, community at that time, for a young boy anyway, was the street you lived on, the school you attended, maybe a turn at the city rec league or cub scouts, with friends of the family get togethers every once in a while across town, where you would be introduced to kids on other streets, students at other schools, and discover other opportunities to connect. It wasn’t big, it didn’t cost anyone a cabin-load of cash, and it wasn’t very complicated. It was simple, ideal and hands-on.

Times have changed of course, some for the better, especially in terms of advancements in science and technologies that make it easier to find and stay connected to the people and matters that are important to us. But too there has come an unwanted casualty of this essentially novel new world. For many, two of the three chairs sit empty, or are only occasionally occupied.

The answer why is complicated, but the better question is how to change it. We all know how to make friends (Rule 1), but if what we want is a simpler, more reliable community, we need to consider what it means to form friendships that are built to last.

Take this recent conversation I had with my brother as example. He lives in another state, a two day drive to get there, and works in the coal mining business. We were talking about the over-dependence on the planet’s natural resources and I wondered aloud how, if the peak oil theorists are correct, would I want where I live to be different.

Well, for starters, I said, it would cost more to travel so I’d want us to live closer.

But what if they’re wrong?

I guess then there’s no foul, no harm. We get to enjoy each other’s company more often, and without all headaches that will accompany the end of the modern world.

Big deal, you might say, he’s my brother. Family looks out for itself. But a few years ago when gas went to four bucks a gallon and the economy started it’s landslide that hasn’t stopped yet, did we all run home to family and circle the wagons? No. We drove less. Rule 2: Keep them close.

The third rule — which are not rules at all, but something I just made up (to admit to anything other would sound like preaching, which this already feels too much like it is) — suggests that doing good things for one another is the cornerstone of friendship, and it is. Unfortunately, I think, it’s also the most difficult to maintain and probably the number one reason those other two chairs might sit empty.

But if Lia’s diabetes has taught me anything it is that one of the most essential facts of life is that we cannot be all things to ourselves. We need others and we need to not feel alone, and if one day the world does overheat or the oil wells run dry, the good that will come from making friends, keeping them close and doing good things for one another might prove a worthy ally, in any kind of weather.

Revelation

From the day I had launched Without Envy I had read and written enough of my own to find appealing the degree of anonymity other authors had chosen to pursue in terms of their privacy. They were writers of great masterpieces — To Kill a Mockingbird, The Catcher in the Rye, The Road — and as such, unlike me, prone to unwanted incursions into their personal lives. But it was not their work or success that inspired me. It was their belief that their writing could speak for itself.

Then Lia — I have struggled for months how to say this in active voice: had she contracted, developed, or simply come down with diabetes? — was nonetheless diagnosed with Type 1 and I created this web log as a place to write about our experience. Why I chose the internet and not a private, paper cardboard notebook to do this, I don’t really know. It wasn’t to share with an audience. Though the support and acknowledgement is irreplaceable, having it read is not really that important to me. Perhaps it would be were what I wrote for Without Envy fiction, but when you are writing about real life you have in your mind this true perfect image of what should be said and you can never quite achieve it. Words like sadness, joy and frustration fall short, so the feeling just goes nameless, truly understood only by others who share in the circumstances. In matters so close to the heart any degree of obscurity is a difficult thing to accept. Maybe it is that way with fiction too. But with fiction, liberties from the truth are to be expected, it’s permissible to look the other way.

What is important, of course, if for no other reason than to make peace within myself, is to write about this experience in detail and how I feel about it. The worry then and the namelessness of my worry might evolve into something else less ethereal, less tiresome. Eventually, it might turn into practice and as such become just one more detail in the story of our lives, so that the emotion will lose some of its power to arouse fear and cause paralysis. Or as Shakespeare so beautifully put it: Give Sorrow Words. The grief that does not speak/ Whispers the o’er-fraught heart, and bids it break.

To this end, I have lately been thumbing through a book by Louise DeSalvo, Writing as a Way of Healing: How Telling Our Stories Transforms Our Lives. In it she mentions a zen proverb that I found especially inspiring. It goes: how you do anything is how you do everything. That got me thinking about the restrictions I had imposed on this public journal in regards to our anonymity. From the outset I had been careful to not use last names or the names of places or anything else that might needlessly give away more about ourselves than I wanted revealed. I knew how unkind the world could be and preserving some level of privacy was important to me, and to us as a family. It still is, but the direction behind it has changed.

It used to be I thought paradise was forty acres of wooded land in the middle of nowhere. No neighbors. No passing cars. No unwanted external intrusions. All the garden and wild meat we could eat. It isn’t any more, though there are days I still long for that. But Lia’s diabetes, among other things (peak oil, climate change, a growth-oriented economy), has triggered in me a practical awareness of our undeniably inescapable vulnerability. It (they) requires a shift in perspective, a rejiggering of priorities, and perhaps a bit more willingness for more community not less; more trust, more sharing, more appreciation and reliance for the companionship found in our fellow humankind.

Trust though is a difficult thing to surrender and there will always be the need for mindfulness and discretion. But the threats we face are not nameless, and nor should our selves be to one another. Isolation can only serve you so much, because how you do anything is how you do everything, whether you are sharing some small piece of yourself with a stranger or opening the door wide to let enter a friendly new neighbor.

Maybe that is why a little bound notebook wouldn’t do.