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

Part Two

I was introduced to Jimmy Buffett’s music on prom night of my senior year, twenty-seven years ago. The song was: Why Don’t We Get Drunk and Screw, and while the song may have been appropriate for the season (or not), it left an impression on me beyond the obvious lascivious attraction. I think it was Buffett’s happy-go-lucky outlook on life (or the fact that my date left me for another party) that made me an instant fan and wanna-be fraternizer. Whatever the reason, I’ve been listening and singing along to his songs for almost as long as he’s been playing in parks, bars and ballparks all around this naughty nutty world.

So it should come as no surprise that I look at life as any hopeless romantic would: with one eye desperately seeking to fill in whatever it was I’d left out. To be sure, over the span of any number of years there come noteworthy moments of missed opportunity to pursue what we want out of life with the same interest and fun Buffett’s songs and performance inspire. Setbacks. Detours. Undependable roadside assistance. They all contribute to the most common catch-all of all time: Shit happens. And it did. Marriage. War. Divorce. How many life stories do those three sturdy words sum up? Then comes broke, a couple of dead-end jobs, the perfect marriage to my best friend and a custody war waged in hell. With all that going on, often at the same time, it’s easy to see how the runaway train of reality could leave fun and interesting behind, like a pair of mistaken identities straddling the tracks of time.

The problem, I think, is not keeping the fun meter focused on what we want out of life, but knowing what we want out of life in the first place (clue: it’s not a big house, loving spouse, or great job). Which brings me to my second shameful admission (for the first, click here).

Franca and I have been married for over half of those years I’ve been listening to Buffett. Twice, in fact, to each other. Once in the beginning and again ten years later in a special ceremony overseas with her lovely Italian family. I was married once before her, as a young Lieutenant starting out in the Army. For varied and valid excuses, in none of those weddings did my wife and I go on a honeymoon. In only the first and the last with Franca’s family was there even any kind of after-wedding soiree to gather with friends, kick off your shoes and act silly, and getting married, I think, is all that. But the extended post-party frolic that every husband and wife should take by themselves never happened. Our fête, to put it mildly, was nothing to write a song about. Even Buffett himself would have trouble.

That hasn’t stopped us over the years though from gleefully experiencing a fair share of honeymoon-inspired activity — downhill skiing in southern Bavaria, a memorable gondola tour of Venice (remind me to tell you that story one day), a multi-day mid-summer hike on the Appalachian Trail, stolen moments of just the two of us locked away in our own house. But straight-lace-in-your face, honey bar-the-door, newlywed vacationing we have not. For that I blame myself. I used to think of our honeymoon as one of those things, like my reading of East of Eden, just a thing I always thought we would get to when we had more time, more money, more everything. There were back then, as I said, good reasons for us to postpone it, but eventually, like many events put on hold, the prospect of it too became just a joke, an obscure and unfunny footnote on our little golden nugget of history.

When a few years ago, just after I turned forty and the swift notion of Franca and I running a marathon together had come about, I was feeling what many other forty year olds feel, like I was sitting on a plateau of sorts with my job, my writing, and the humdrum routines that were involved in shaping my every day. It all just seemed so lacking a bit of the Buffett-trifecta of freedom, fun, and adventure. Where were the “good times, the riches, and son of a bitches” I’d one day sit down to recall? Was this my idea of growing older but not up?

I didn’t think so and thankfully neither did Franca. She agreed to the marathon and in January in the freezing cold rain we started the first of a rigorous four month training schedule. The experience when it had ended was truly brutal and beautiful, as anything worthwhile can be; and I guess that’s the point of all this, why our lost honeymoon has been on my mind now, at the halfway point in my life if I live to be ninety, nine short months after Lia’s diagnosis: At any moment things can change. It’s important every once in a while to take a break from the normal, remind yourself of the voyage you’re on and of the treasures that are important. Go on a long distance roadtrip. Discover some new port of call, dance a little, partake in the all night party, and if you find yourself on this journey in a race you never expected, know that it helps when you’re crossing the finish line if you’re holding on to someone else’s hand.

As for our honeymoon… well, as any of you other parents of young children with diabetes would likely agree: that will still have to wait.

But at least we can still train for it.

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….

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.

Where Are We Now

When it was through multiple daily injections instead of a pump that we delivered insulin to Lia, minus the early emotional strain, it was a fairly straightforward method of managing her diabetes. Or as straightforward as any such nearly impossible task can be. Three times a day she ate a meal, normally of food prepared in our kitchen, and for which we bolused insulin beforehand based on her blood sugar and the food’s carbohydrate count. Before bed we gave her a long-acting shot of Lantus to cover all of her non-food requirements for the next twenty-four hour period. In between these occasions we monitored blood sugar, treated lows, used exercise to bring down high numbers, snacked responsibly, and did all we could to go about our daily lives and not be slave to the next shot. In addition, we kept copious notes in her logbook of what she ate, how much we dosed, and how she reacted to certain foods; and we read and talked often of ways to better ensure her happy, healthy future.

As a result we were rewarded with the majority of her blood glucose readings in target range and a three month HbA1c two full points lower than when she was diagnosed. But besides being hurtful to Lia, the shots were time consuming, inflexible, and less precise than we wanted to be. The strongest thing they had going for them was that in theory a shot has minimal lasting impact in the course of a day. You deal with it and move on. Lia could dose and as long as that dose was marginally accurate she could within reason forget about diabetes. The key word, of course, is marginal, which when held up against the sexy appeal of technology doesn’t stand a chance. Add to it the reality of what it means to deal with diabetes and move on and we naturally leaned toward the pump.

So it has been three weeks since Lia switched over to the Animas Ping and while there have been some great improvements to her treatment, chiefly the absence of needles, the verdict — for us anyway — is still out on the MDI vs. Pumping debate. On the one hand, it is much easier to dose. Just enter a few numbers, press Go and voila, insulin delivered. The remote meter makes it even less intrusive, enabling us to not even bother Lia except for the blood test. The logbook reflects blood sugar results similar to what we were getting on shots, perhaps a bit higher as we are still trying to learn the pump’s capabilities and fine tune the many settings; and while we haven’t yet had a glycated hemoglobin test while on the pump, all indications are that it will be acceptable.

So why not stop there, with acceptable? Why muddle things up with second-guessing the reasons for abandoning what had so far proven to be an effective means of treating diabetes? Lia prefers the pump. It works well. Her numbers appear fine. Everyone is happy to be rid of the shots. Why can’t I be content with that?

Part of the reason why is the complexity of it all. Our expectations were high on the pump, either because of our lack of understanding or it being oversold to a couple of amateurs. The pump is no silver bullet. It is an intricate piece of equipment that requires extensive thought and expertise to use it to the fullest of its capabilities and achieve tighter blood glucose control. Tighter control, however, it appears at the moment, is synonymous with greater worry, and possibly even risk.

I’m not opposed to worry or work, especially if it will benefit Lia, but we are still newcomers to diabetes and there is much I’d still like to learn about it, and time I’d like to devote to research and advocacy. I wonder if the energy to calibrate the pump to Lia’s insulin requirements would be wiser spent, at least in this early diagnosis stage, better understanding the effect food and exercise has on Lia’s blood sugars. It feels at the moment like taking off in a plane without having thoroughly learned how to land it.

Complexity is one thing. It can be overcome through knowledge and experience, two things of which are both in short supply around here. But the other reason I am not quite sold on pumping over the shots has less to do with technology and Lia’s treatment than it does her way of life. It comes back to that minimal impact thing. MDI, as sad as it may sound, fit our lifestyle nicely. We eat real food, enjoy both vice and virtue in moderation, and take seriously the health of our mind, body and spirit. The shots, since she had to take them, became simply another part of the way we live our lives. Not a preferred part, mind you, but a part nonetheless. They were a few seconds of discomfort. We tried not to dwell on them, only the results.

But any loss of the privilege to live life unattended is the same no matter the treatment. Whether it is a shot taken before a meal or the programming of a highly specialized device, ultimately it will be Lia’s overall health that will direct us. I just hope that as these and more and more options open up to her they don’t come at some greater cost.

To find out more about the research being done for the treatment and cure of Type 1 Diabetes, click here. To get started as an JDRF diabetes Advocate, click here.

Our Little House

As long as I am talking about parenting, it would be shoddy of me not to cast a little more light on the tenets of what fatherhood means to me, especially at this time of year. Of course tenets is too strong a word for any manner of parenting, which should be flexible and give with the priorities of the moment and the needs of the whole and not center on one individual, but just imagine if every father funneled each decision they’d ever made with a mind toward the sustainability of their children’s future how much kinder and gentler the world would be. And precisely because of this and because any attempt on my part to break practice down into theory rings of both lecture and boredom, I do this at the risk of highlighting my own shortcomings, of which there are many, especially related to parenting and family. But with diabetes in the family picture now our understanding of how actions today affect what happens tomorrow takes even greater meaning. This is not drilling for dinosaur bones we’re talking about, but life and death.

Some of what I learned about being a father came from my own father, an often cantankerous yet warm-hearted man who over his life taught me little in terms of parenting but whose example of hard work and resilience I carry with me always. Because he had few close male friends, or none anyway that he brought around the house, I seldom had other real life men to watch and learn from and one day imitate in my own decision-making as a father. There were coaches and father’s of friends of mine, but not any I ever really watched with an eye toward their principles on parenting; and the most influential teachers I had were women not men, which contributed to my parental make up in very substantial ways.

But this is about being a father, not a parent. So as a boy my patriarchal design and aspirations were influenced by other, less-actual factors. I would love to say that more came from books, than from television or the movies, but I grew with the onset of televised drama and sitcom, so there is probably more Charles Ingalls in me than Atticus Finch; more Cliff Huxtable than King Lear. Fortunately, fatherhood evolves (or we might all still be stuck driving horse-drawn buggies to work, the demise of which is about dinosaur bones, incidentally), and through periods of soul-searching, I find myself occasionally reinforcing or reinventing what being a dad means to me. With Lia’s diagnosis late last year came one of those rising-within-you moments.

With diabetes, there has been fear, worry and frustration. There have been obstacles to overcome, difficult new things to learn, aggravating changes to our day to day lives. But also there has been opportunity. The chance to become closer, kinder, to appreciate more one another; to become stronger, more confident, more determined; to live in each moment. It’s not easy. There are myriad times where it seems endlessly impossible. Where the risk and the cost challenge the theory that all hardship can be overcome with attitude, that less is more, that newer is not better, that to be happy and healthy you don’t have to become a millionaire. That the best things in life are not bought, but given freely.

Diabetes opposes simplicity. There is not just food to consider. You do not just exercise. There is no such thing as just another cookie, or lap around the park, or physical exam. Life is more difficult. It requires harder work, greater attention to things that might normally go unnoticed. The reward of course is worth it. As Geppetto once said to his little once-wooden boy: You’re alive!

But to quote another famous father when his daughter became ill and he was told by a minister that this was chosen by God for some special purpose. Charles said: Tomorrow, I have to tell my daughter that she’s going blind. What shall I tell her is that special purpose?

Being a father is wonderful. It would be wonderful too if raising children was only about teaching them right from wrong, how to be a good citizen, set a good example and point them in the right direction and then step back and cheer them on. It is not that and has never been that for all of time. Being a good father, like being a good mother, evades definition. It is more than words. It is the action of adapting and changing to fit the situation, for himself, but always with the greater good of the family in mind. It is about safety and security and providing and about making this life as hospitable as possible for all. Though it was probably a mother life form in search of a better existence that led her brood out of the first gloopy seas, it was a dad that tamed the jungle and helped make the land a home. It wasn’t easy then and is made only easier now because of their and our other ancestors’ enterprise and ingenuity. And that is what fatherhood means to me.