Words Without Envy

The way the year ended was pretty much the way that it started with a trip to the children’s wing of the hospital. Only this time our purpose there was not to admit Lia for what would become a very long and arduous twelve months discovering and treating diabetes, but to visit the children who now, like herself one year ago, were suffering through the holidays confined to a hospital room.

For some time we’d been scratching our heads as to how we could mark the anniversary date of her diagnosis and our thinking at first to be honest — or mine anyway at least — mostly veered in the tempting and frankly much warranted direction of we-can-do-anything in making amends for last year’s depressing celebration. Diabetes could not and would not keep us down. We all having weathered it together deserved something big, something memorable. But like many things in life often the best place to mark such a passage is not carried away with intentional bliss but closing the loop in the very same place where it started. So we shelved all ideas of a personal family statement and made plans to visit the hospital bearing notebooks and pens for the children.

In Walden Thoreau writes of his wood-pile and how during the coldness of winter and the howling windy nights he endeavored to keep a bright fire in his house and also in his breast. Writing too sustained him, as it has me too over these past many mind-numbing, inescapable months. This story-journal has been my wood-pile, my writing the axe, and just as Thoreau could look out through a window and admire his work by the volume of splintered wood chips, I look back over the words that I’ve written and the words of the friends fireside and I find admiration as well. There has been sorrow, yes, and worry and much frustration, but the moments of pleasure and pure wonderment of the grace and the courage of Lia, my family, and everyone touched by disease resonates warmly and endlessly throughout my heart.

There is much to be thankful for. For John and Krista, who have suffered from the lack of attention or too much of the wrong kind of attention and in who I love and would trust wholeheartedly would something tragic ever happen. For my parents and siblings, who have appeared here only occasionally but have shaped my beliefs and actions more perhaps than anyone. For our friends, there are no better companions. You know who are, we love you. For those strangers we’ve met on the way who promised us open arms, not once did you disappoint. Thank you for your attention, your comments and your compassion.

And, of course, there is Lia. There is nothing I could write that would adequately express my love, my pain, and my hope for her. I have tried to be honest in writing about all that has happened this year, the ups and downs, the many new things we’ve learned about each other and ourselves. The truth that’s been steady throughout is this one conflicting opinion: There is no better nor no worse person in the world this could have happened to. She has truly been like an angel.

Especially, I’m thankful for Franca. This year has been trying for both of us, in ways only parents could understand. For most of the day and night we’ve had to shift our focus on where it was needed and that has been costly in terms of being a couple. It would be a lie to say there have not been moments I did not wish to return to the lustful, love or be-damned carefree days of our past. But she more than anyone else has shown me that living without envy is not only possible, but the only way to live life. They say that marriage isn’t a word it’s a sentence. We are, this journey and she have taught me, the better story.

Like everything, there is much that changes in a year. We grow, we discover, we make our own history. We learn what we are made of, and also who we are not. Every day is an opportunity.

As we left the children’s hospital and walked across the street bridge to the parking deck, Lia was feeling especially happy. For her, our visit wasn’t about marking this date of one year with diabetes. It wasn’t even about her. It was about giving back. As she skipped along in the cool sunlight, squeezing my hand, she spoke up and said, “That was nice. Can we do this again next year?”

Little princess, you betcha.

Pajama Walks

The Things We Have Now

It was a cold, beautiful night with fresh snow on the ground and because it was cold and had snowed we stayed in our day clothes after dinner and put on our boots and heavy winter jackets and slipped on our gloves and knit caps and looked like a party of arctic adventurers headed out on nighttime maneuvers as we followed the dog out the door, turned up the drive, and started down the snow-covered street. It was very cold and the girls and I held hands. The lights were on in the neighbor’s houses and we alone were outside and the street was quiet and still and the blanket of snow on the ground cast a glow on the still silent night and made our way easy to follow. There were no cars coming or going and the dog ran freely up ahead. The three of us kept to the roadside where the snowpack was softer and deeper and the feel of the whiteness beneath our boots indeed gave us the sense of something special.

Like most times before, we walked slowly and talked about our day and the days ahead. We stopped often to play in the snow or admire the twinkling holiday decorations or stand daringly under the hunched-over shapes of the white-capped evergreens which drooped and stood sentinel like tired old men and the tenderness of the snow shaken loose of the branch brushed the skin like a mother’s soft kiss in the night.

Here on foot on the empty road the conversation comes easy. We discover ourselves suddenly free and especially absent of all other burden of occupation. There is walking and there is talk, nothing else. Time and the seasons slow so that plans can be made, arguments settled. There is singing and laughter, and always there are stories to tell. Very rarely, in over fifteen years of stepping outside after dinner, have our walks been interrupted by neighbors, which is both good and sad. It is only later in life that I find myself leaning more toward the latter. Mostly though I’m quite happy when it is just us.

At the big house with the lights synchronized to holiday music, the girls and I stopped and listened. We stood there for not a long while — it is small moments like that which are best to remember — before one of the girls threw a snowball and nearly knocked my cap off. We all laughed and turned and I called to the dog to follow and we headed back down the street toward home humming the Christmas carol.

Roughly Speaking

roughly 2,000 finger sticks

roughly 500 middle of the night blood sugar checks

roughly 700 shots

roughly 60 infusion set changes

roughly 200 episodes of hypoglycemia

roughly 1000 episodes of hyperglycemia

roughly feeling like a perfectly fine nine year old 1.5 days out of every 3

roughly counting 45,000 carbohydrates

roughly dosing 5,000 units of insulin

roughly costing $6,000 on diagnosis, treatment and supplies

roughly 100 hours in a doctor’s office, emergency room or hospital

roughly countless tears shed

roughly untold moments of uncertainty and head-scratching

roughly umpteen hours of lost sleep and oodles of life-saving worry

Thinking things could always be worse: everyday

In Each Our Own Voice,
Every Step of the Way

Since Lia’s diagnosis eleven and a half months ago one of the things we’ve been watchful of and spent many long hours safeguarding against was the effect diabetes would have, if any, on everyone’s self-esteem. We watched out especially for Lia’s, but our worry was not limited to her well-being alone. Before this disease it was really no problem as few things we did ever favored one child over the other (though it might not seem that way to them) and if it did those feeling the offense were encouraged to talk about it or let it go. Parenting is not simple; kids mostly don’t understand that. You’ve got to speak up for yourself. Then came diabetes and it was like nothing any of us had ever experienced before and the sheer volume of the time it consumed had the potential to capture our attention and hold it hostage in ways we had never known. And for the longest while it did, and still does on a regular occasion. But like any of life’s harder challenges, there are some things you do well and some you don’t. The key to thriving is not falling into the trap of denial which will lead you to nowhere good. Diabetes was put here upon us, upon Lia; it’s hers and ours to figure out.

Some of the things we did well: educating everyone on diabetes, including them all in the planning of meals, and trying to be proactive in Lia’s treatment and care so that diabetes did not hinder normal activities and interests. Some of the things we did not so well: Expecting our diabetes experience to affect everyone the same way, yielding common sense to overconfidence, moving on before we were ready. For their part, the kids handled most things pretty nicely. They pushed when they felt the need for it, and pulled back when the moment called for less. They developed a sense of emotional intuitiveness about their parents, me especially, that sometimes in hindsight just made me want to cry.

Like that one time this summer when I asked our son John to write an essay about how diabetes had changed him. He was struggling through some issues of his own and I thought filtering time through the lens of a life-threatening illness would help guide him back on course. It didn’t work out that way and his bitter diatribe in response was hurtful and accusing. So I did what any parent would do and shot back and we both now are living with the consequences. What I had failed to grasp in his paper and in his reality was the fact that life does not stop for an adolescent. There is the self and then everything else. When their world comes under attack from any direction their underdeveloped means of coping is hardly any match for the unreality that ensues. Sometimes the only appropriate voice is that which is the quietest.

Krista, too, our other freshly-minted adolescent, the year-long D-challenge has raised the awareness in her that life can deliver hard, knock-down punches. Her reaction has been appropriate for a kid her age, like a shifting sand dune with a ridge line of which you are unable to pinpoint: What if I’m sick too? Why can’t we just have pasta? Shouldn’t I learn to do that? Though she doesn’t always exhibit it, of late her attitude seems to be more of the latter as she’s shown a wont for looking out for her sometimes-annoying little sister. Such that when I see her come around during a blood test or infusion set change, I notice the look on her face as she watches is that of a resigned but clearheaded, true survivor: This is just what must be done.

For her part, Lia has been at the center of this and she has in her acceptance of it made us proud. Not a day goes by that I don’t wish it were all just a dream and we’d wake from it and our life would return as it once was, but never have I, not in eleven months, heard Lia wish the same thing. Not once. She more than any of us has taken the gospel truth of this disease and made it a part of herself, complete with the grief, the anger, the frustration and dismay, but also with appreciation and humor and beauty. She has through every minute inspired us all with her courage. Her own words say it better. In a recent form she filled out for a Christmas piano recital, she listed as her proudest achievement: Giving myself my first shot. Doing that was the biggest thing I could ever do for myself.

Like Lia, Franca is a person of facts. She is also a lover of language and as a foreign language teacher believes that it is the individual parts of the message that matter, not just the sum; so finding the perfect balance to work, the house, the kids, me, and diabetes has not been easy. It has taken much time and the exhaustion she feels at the end of day as she climbs in the bed is apparent. But stronger yet still is her will as a mother and wife and caregiver that she rises again just a couple of hours later to check Lia’s blood at two a.m. Her beloved voice, if you’ve listened, rings loud and clear on every page of this blog.

Several months ago when I started writing Without Envy, not long after Lia’s diagnosis I compared the journey that lay ahead to that which a pilgrim might embark on, where with our goods strapped to our backs we’d encounter others along the road and swap stories and learn about all the demanding peculiars of this disease, so that one day we might control it. We have come a long way since then and though each of us, every step of the way has grown smarter at putting a leash on our obnoxious traveling companion, controlling this beast wholly is out of the question and will be for months, maybe years to come. It may be that we never will. There is always a gloomier predicament to take joy in having avoided or averted. Maybe just not setting it free will be enough to keep it from wreaking more havoc. I don’t know, but maybe.

As the one year anniversary approaches and I think of all that has happened, all that we’ve learned and accomplished, the friends who have been with us since the beginning and the new ones we’ve met along the way and all of the stories we’ve shared together, I wonder about the new year and what it has in store. Mostly though I am just grateful that there is still so much more to discover.

External Genetistry

It was a common yet unproductive habit in the days, weeks and months following Lia’s diagnosis to do as any worried parent might do and question every external encounter or genetic mutation in our family history in pursuit of where had this come from. Often it wasn’t a very long thought, really more of a bothersome prelude to something more bothersome still than it was anything else, like waiting in line for a flu shot or the feeling you might get when inspecting a food’s nutritional label for what turns out to be no better understanding. Sometimes it appeared irately, a frantic obligation to safeguard everyone in the house, as it did last Winter when I almost convinced myself the diseased scoundrel was hiding amongst our flock of backyard chickens. If you let it you could spend countless, unfavorable hours glued to data of the electronic sort looking into plausible theories. In the end, finding an answer was as elusive (and contrary) as the century-old debate on emotion: do we run because we are afraid of bears or are we afraid of bears because we run.

It was wrong to be driven by emotion though; even when it was your own child and your own family at risk. There was nothing to guide us then other than what we knew and what had been made perfectly clear before we had even left the hospital to come home was that controlling the risks of type 1 diabetes rested soundly on the shoulders of the patient and their caregivers. There were some people who thought that because we’d been made aware of Lia’s diabetes and the symptoms of it had been treated the danger for her was over. Others mistook what she had for type 2 and their attitude leaned casually more toward pity. The most well-meaning but less informed of them all would question aloud were things getting better, and they were of course getting better, imminently speaking in terms of health and emotion. But better and cured are no more related than a book is to ignorance. What it really took, other than knowledge, was self-control and a willingness to reshape our reality to fit the new routines on which Lia’s livelihood now depended.

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.

And so it has been with brevity (and more than a little unrest) that I have over the past eleven months listened to my heart and considered the origin of Lia’s diabetes with no real hope of learning what it is and certainly without having any expectation of doing anything about it. What I uncovered was not a surprise: a family history (myself included) of an auto-immune disorder that has been linked to type 1 diabetes. This along with irrefutable proof that one other genetic mis-coding of mine — congenital anosmia, or the inability since birth to perceive smell — found its way into one of my other children suggests that nothing good would come of digging into this any further.

Or would it? Is there not danger too in following the path to discovery only to turn away in shame? Can anyone tell which grain of sand will cause the sand pile to collapse and which will not? Even rescuers learn something from a mudslide, if only to confirm firsthand that shit does in fact roll down hill.

To relate it in terms of our fear and the bear and the question so often posed, even by ourselves: The worry hasn’t diminished because things have gotten better, things have gotten better because of the worry.

That is the trouble with looking into the heart. Sometimes it works in your favor, sometimes it doesn’t. On some days it felt like nothing else mattered, but mostly there was so much more to think about.

I am, She is, We are

We submitted our application to the JDRF Children’s Congress early last week and in so doing took one more potential step from the shadows of obscurity into the spotlight that is the ardent voice of advocacy and awareness. Our story. Our faces. Our family.

There are two things that stand out about this. One, it is very difficult when you are trying to lead a normal (or, I don’t know, maybe it’s abnormal) life without envy to put yourself in a position of public exposure. Happiness, the great philosopher Socrates suggested, was contingent upon, among other things, living with a tolerance of being overlooked. I believe that is true and were it me, not Lia, with diabetes, I could, I think, strive for that kind of low profile life, however right or wrong it might be, if only to spare those closest to me my fear and frustration. But it is not me, it is my daughter, and her keeping that or any other source of anguish to herself is not anything I would ever wish for Lia or any of my children.

And there, as they say, is the rub. Where do you draw the line between nurturing and preparing your child for the realities of adulthood by setting a good example? Is life without envy even possible if every week you sit down and describe, vent, seek, share or make permanent all the many ways diabetes is a part of it? There is value to that, of course. I would not have done it this long were there not. But it’s important too, perhaps more than anything else, that we accept those things out of our control (diabetes) and replace the thing we most desire (a cure) with only things we are certain of obtaining (our dignity). Is that not the true measure of without envy?

The answer is obvious, we are after all human and the human condition is one of enduring acceptance: some things are up to us and some things are not up to us. It does not take advocacy or writing or championing a cause to appreciate that, but it might sometimes make it harder.

Over the last couple of weeks, through no conscious effort on my own, the kids and Franca were on vacation and time just got away from me, I welcomed a break from writing for Without Envy. I have not taken that long of a hiatus since Lia was diagnosed last December and while I don’t write or post every day, the purpose — raising a child with type 1 diabetes to live life to the fullest — is something I think about every day. During this time though I tried living as Socrates might, quietly, stoically, without metaphors, stories, or mindful stretches for deeper meaning. Those things I reserved for my fiction.

Mostly, I thought, it went well. We worked some, played some and spent time with friends and family. The only mention of Without Envy was when Lia suggested it to someone else, which surprised me as I hadn’t been aware that she was so tuned in to it, but she was, more than I even then gave her credit. Of her diabetes, we were dealing with it straightforwardly through science, smarts and intuition, not wordy contemplation.

Then, near the end of it, we sat down one evening at the kitchen table and realized we hadn’t changed Lia’s infusion set as we’d planned. Because she was out of school, her blood sugar numbers had been running high and this particular hour of the day was no different. It was pasta night and the water was already boiling. We wanted to get her levels down sooner than later, so we talked about giving her a shot instead of waiting the five or ten minutes it would take one of us to change her site and dose her. It had been since June she’d had an injection, but she’d taken hundreds of shots. It was nothing new. She’d been giving them to herself for months without flinching. But at that moment the thought for her was just too much to bear and Lia broke into tears.

What is it? we asked and when she didn’t answer right away, we backed off: All right, we said, we’re sorry. We’ll go ahead and change out the pump.

It’s not that, Lia answered through sobs.

What then?

It’s everything, she cried. It’s all of it.

******

So we aren’t, it turns out, any of us, quite ready to accept that this is just simply the way things are now. We have an obligation to Lia and to all children with or without chronic illness to be their voices for them. To raise the call for help, to bring attention, to raise money, to demand that someone listen. Through our example, Lia may one day discover her own voice and will say on her own to the world: I hear you. I am here. I want to help.

Which brings me to the second point of all this and it comes from another philosopher, Marcus Aurelius, who said that nothing is worth doing pointlessly.

I’ll say that again, nothing is worth doing pointlessly.

Advocacy. Fundraising. Research.

Whatever it is, make it count.

What Would Jimmy Buffett Do (or If I Live to be Ninety)

This journal has been my place over these past eight months to reflect, vent, discover and in some cases even procrastinate, all in the worthwhile interest of coming to terms with Lia’s juvenile diabetes. I like to think we are all better because of it, and we are, all of us, better for just keeping our health and the wellbeing of others at the forefront of our attentions. Today though, what I’d like to use this space for is simply a place to pose the title’s stirring question…. with maybe just a tad bit of brooding thrown in for what I hope will be good measure.

We’ll get the brood out of the way to begin with.

There is plenty in my adult life I’m ashamed to admit: little talent for fixing broken things, not flossing daily, deer hunting from my back porch. Two in particular however have been on my mind lately. The first concerns John Steinbeck’s epic novel, East of Eden, and it’s sweeping portrayal of the human struggle between good and evil. The second is of a much more dutiful, personal nature.

One day many years ago, my wife and I were talking and agreed to read each others favorite novels. Hers was East of Eden, and mine, All the Pretty Horses. She, of course, followed through and we shared many wonderful evenings talking about the book and reading passages together of McCarthy’s rich and beautifully rendered prose. His is a stripped-down, vigorous version of storytelling that I greatly respect and strive for in my own fiction writing. My wife knows this. She encourages it, she wants me to be successful.

As for my reading of East of Eden, all I could say was I tried, and I did. But each time I started I failed to get past the novel’s memorable opening descriptions of the Salinas Valley long enough to become involved in the Cane/Abel story, which clearly was penned by an enormously gifted writer, someone with whom my own work could never compete. At that time, reading Steinbeck’s work (or McCarthy’s), reading almost anyone’s work, in fact, while laboring over my own was a recipe for self-rejection. Every word I wrote smelled of garbage or worse, it smelled of someone else’s garbage.

Then I got older and managed a few lucky breaks that enabled me to work harder at my writing until one day I started to think that this whole East of Eden thing might make for an interesting novel. So I tossed it around in my head, made a few notes, some character sketches, and cooked up the plot of this self-absorbed man whose chronically-distraught, novelist wife commits suicide without him having ever read any of her books. I then filed my notes away. When, several months later Lia was diagnosed with diabetes, I came across Franca’s book sitting on my bookshelf and I thought to myself: how pathetic. How goddamn sorry of me.

It is both strange and good how you start thinking about time and how you spend it when faced with life-threatening challenges. Some time ago, after surviving a seaplane crash in the waters off Nantucket, MA, singer-songwriter Jimmy Buffett wrote in his autobiographical, A Pirate Looks at Fifty, that within days of the crash he sat down with his pain and mortality and composed a list of wishful thinking, which began and/or possibly ended with the wish that the crash had never happened. But it had, and when he stoically accepted the fact that reality “had reared its ugly head, and shit had happened that was not just going to go away,” he was able then to “deal with it” and not stay pinned down with fear, frustration and guilt. For him, that meant hydrotherapy,  getting back on the water and, in this case, coastal bay fly-fishing.

I am an unlearned, land-locked sailor myself, and fly-fisherman un-extraordinaire, so I understand the attraction. I understand too that when your loving wife, who is also your number one fan and proven remedy for whatever ails you, tells you what her favorite book is you had better buck up and read it, not use it as a prop in a novel. What a shame though, it took me so long to get there. By the time early this past spring, when I finally took it down from the shelf once more, the book, or rather my reading of it, had become the butt of a sad little joke shared between the two of us.

We had known of Lia’s diabetes just a couple of short months and were still getting used to the daily multiple injections, counting carbs, combating highs and lows, and the loss of sleep that comes with the constant, ever-present worry of what if something went wrong. I was in much need of therapy and had found some even on water of my own. But a visit to Mother Nature can carry you only so far and reality set in again and I was back defending my daughter’s young life against an invisible enemy.

How would reading a book that did not deal directly with how to fight back help with that? Did I not have enough guilt already? Was this just my shame playing mental squash with me, or was losing myself in someone else’s fantasy just the universe’s way of offering me a sliver of peace in what had otherwise become our new and extreme reality? I tend to think in more down-to-earth terms and if treating diabetes was akin to a war then Franca and I were the generals and though it felt like we were winning, the shock and intensity of those early days was tiring and unshakable — we were tugged in so many directions (and still are on occasion). I was feeling a detachment from Franca and the lives we knew before. What I needed was a fresh healthy dose of something special, of what Buffett might say comes from the bottom of the heart.

So I started East of Eden for the umpteenth time and as I read I felt myself becoming part of a thing that Franca loved and had loved for many, many years before we’d met. The shared experience, not the story, was renewing my strength and reminding me of the joy to our simple togetherness. When this past week I finished the book I knew then why she loved it. It was beautiful, brutal and rousing, all of the things she had promised.

But more important than the work and the harmony it inspired in me is what I hope my reading it says back to her. You’re important to me. You matter.

To be continued….

on being lia

Loves to sing * Tells long stories * Was born in an ambulance * Likes to make people laugh * Plays dress up * Has a beautiful voice * swims like the Man from Atlantis * Favorite color is blue * Favorite poem: Stopping by Woods on a Snowy Evening * Loves to camp and hike * Being outdoors * Knows every word of The Phantom of the Opera * Keeps a messy room * Sweet * Once cried over Abraham Lincoln’s passing * Wants to grow up to be a scientist * Likes to listen to Johnny Cash * Wishes she lived on a farm * Likes playing soccer * Obsessed with Harry Potter * Straight A student * Is a great artist * Loves acting in plays * Laughs at her Dad’s silliness * Plays the piano * Loves to wrestle * Afraid of thunderstorms * Rarely a picky eater * Used to chew on a diaper rag to go to sleep * Wants to learn how to sew * Likes riding shotgun in the big white pick-up * Eating carrots * Making soup * Going out for ice cream * Combs her mother’s hair * Loves animals * Has lived in only one house * Had three different bedrooms * Been to Rome, Paris and all over Belgium and some of France * Wants to go to Disney World * Likes to exercise * Friendly and outgoing * Knows everyone at her school * Enjoys learning French * Digs holes in the dirt * Makes funny faces * Doesn’t put things away * Works in the garden * Loves her stuffed animals * Never enough shoes * Summers at Nana camp * Is a good hand in the kitchen * Would eat cold pizza for breakfast  * Nighttime Pajama Walks * Dry Erase Boards * Prefers vanilla over chocolate * Likes to listen to country music * Very Kind and Considerate * Loves board games * Being with others * Wants to look up to her big sister * Misses playing with her brother * Favorite pet would be a dinosaur * beautiful handwriting * Wishes she were taller * A good friend * Beloved daughter * Brave * Courageous * Full of life

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.

Noodling

In some parts they call it catting. In others, it’s hogging or stumping or dogging. If it is trout, not catfish, you are after, it is considered art, not a sport, and known to practitioners as tickling. However, those of, shall we say, a bit more extreme-minded personality, prefer something a bit ornerier as their prey. Plus, if you are of the necessary mindset and in the mood for entertainment, there is even a DVD series called Girls Gone Grabblin’ for your catfistin’ viewing pleasure. Universally though the term for it is noodling. It involves wading into shallow water and shoving your hand beneath the surface and plunging it into a dark underwater hole where if you’re lucky and all goes well it will be swallowed by some giant catfish. Irregardless, the name you give it, it is by the very unambiguous definition of the act, hands on, and as such a fitting analogy to other such menacing matters.

We returned to the lake over the Fourth of July weekend to share in a longer visit with our friends from Connecticut and though none of us noodled or grabbled or otherwise did anything risk-worthy of a video, we did come across two young men hand-fishing for catfish along the shoreline. My good friend, Mike, and I were standing on his dock fishing when they asked did we mind if they noodled past.

At the time I had no idea what they were even talking about and went on fishing, but watched after the two boys with interest as they went about probing beneath the surface with their hands and a stick searching for probable nests. The way they felt unseen before them reminded me of searching the nightstand for my glasses in the dark, minus of course the caution (read: fear) of being latched on to by something fierce and toothy. I found also a poetic semblance in their ambitious blind hunt to the treatment of Lia’s diabetes.

Such cause for waxing lyrically may have been due to my state of mind, which after the unceremonious case of forgetting the dog, was convinced that the rest of the summer would be going much in the way of her blood sugars: A plethora of mind-numbing highs, mixed with a few startling lows, some brief, unpredictable moments of rest and contentment. For both Franca and I it had begun to feel as if much of our days and nights would be spent on the periphery of living, bound down by the sole occupation of chasing phantoms. It was a sentiment we felt sure would be backed up with scientific proof during Lia’s next endocrinologist visit, which occurred the week following our lake trip.

Fortunately our fears, like the worry of those catfish hunters who sometimes poke something they wished they had not, were not realized. The two boys got their fish, a thirty-five pound channel cat, lurking beneath a boat ramp a few houses down from our friend’s. And despite the struggles we’ve had with adapting to pump therapy, Lia’s A1c came down to 7.8.

Our relief, of course, was immense, as was that of those two fishermen when the great water cat came clean of its guarded obscurity with no injury to either of them. And after the elation settled and those wonders we’d brought to the surface and spoke of and then turned loose and after the doorway in which we’d come to know them had gently closed and we were left standing alone untroubled by the effort of our accomplishment, at peace even perhaps, we thanked ourselves for the warriors in all of us who never stop searching, probing, and reaching into the next hole.

It is the experience of our hands that we learn from, which fingers to prick, which dark holes to avoid. We are being taught to take it one day at a time, one shoreline after another, celebrating the rewards of everyone’s hard work and  mulling over the things that went wrong. But such discovery has a hard-edged strangeness about it, an awareness that leaves us weary. Yes, with it comes empowerment, but there is always the troubling forethought of what might linger in the unknown. For tomorrow is another day and fear too can be motivating. Parents of children with chronic sickness know this maybe better than most. As Franca put it to me as we were driving away from the doctor’s office with our good news: Every time I leave there, I can’t help but feel like crying.