In Good Time

One of the first things I did after Lia’s diagnosis for T1 was go out and buy dress clothes. It sounds crazy, I know, especially all of these twenty-five months later. What an impulsive, irrational thing to do, right, as if $100 slacks, a couple of nice shirts, and a pair of new shoes would serve in some sensible fashion as a means of returning control to me a little something of what had been lost. It didn’t of course, but who can blame me. History is full of many a father’s reaction to disheartening news met with haste, impulse and abandon.

Let me explain to those of you who might not have all the details. In April 2007, with Franca’s support, I left a fifteen year long career in operations and supply chain management to pursue a dream of writing a novel. Though it was a new direction for me it had not come out of the blue. For every one of those years leading up to that moment I had treated my writing like a second job, a thing I did everyday, at the same time of day and with the same determination and dedication given my corporate job. From four a.m. until six, I wrote. Five, often six, days a week. Over that time, I wrote one book, then another. I made every effort to get them published but gave up after a few promising but disappointing starts. Looking back at those manuscripts now passing on them was very much the right thing to do. I still had much work to do. If I only had more time.

With that in mind, I decided in 2007 to give up my “first” job and give writing a full time try.

I loved it. Living as a writer. Working in the house. Wearing what clothes I wanted and not those which were required. I entered and won an Emerging Artist Grant for a novel I was reworking and I honestly felt at that time that it wouldn’t be long before I’d be earning an income from all those many years of effort.

Then, two years after quitting my job, everything suddenly changed, and in ways most of you know very well. With Lia’s diagnosis and a little education I came to shortly understand that it would challenge our lives and in this case in particular, our family’s finances. Almost at once, I believed that the resources we’d set aside to allow me time to write would be grossly inadequate to cover the looming (and unavoidable) medical costs, much less my “starving artist” endeavor. But beyond even that was the feeling I had that writing fiction was simply unthinkable, spending my day making things up just seemed wrong what with everything else that was at risk.

So, I suspended my writing and prepared myself for the notion of returning to a salaried position. One year passed, though and another and somehow we endured. We focused on Lia’s health, on learning all we could about diabetes, and fundraising for the JDRF. I never had to put those new dress clothes to test and return to the job market, but I never fully divorced myself from the notion.

Eventually, I returned to my imagination and writing, but this time I approached it with the added advantage that I wanted–needed–to show Lia that you could pursue anything you wanted in life, even with the worry and cost of diabetes. And so we have. With just one income. With sacrifice. With a passion for pursuing a dream.

Like many things in life, things gradually worked themselves out, and so it is with great pleasure that I am pleased to announce my debut novel, A Lovely, Indecent Departure, a phrase that hardly describes our last two years, but captures nonetheless the heart and hopefulness of family.

A Lovely, Indecent Departure

A novel by Steven Lee Gilbert

To read more about the novel, my life as a writer and find ways to buy the book, please visit:

 Steven Lee Gilbert.


 

No Strangers Here Today

Like many families, the talk this time of year in our house centers around the holidays. School is out and the kids and Franca are home and there is much ado about gifts, food and sharing in each other’s company. It’s a special time, if we can keep it in our hearts (and that means keeping it out of our wallets), that allows us the opportunity to step away from the regular routines of life and simply enjoy the time and attention of the people we love and admire.

Talk also turns to diabetes, or more specifically, those difficult three days right after Lia’s diagnosis. We remember all too easily the rush to the emergency room, listening in shock and disbelief as the nurse explained the procedure for administering an IV, then the anger, and eventually all those emotions giving way to the worry and grief and reality of a threat that will never, ever go away and leave our daughter.

There are a plethora of adjectives I could use to describe the last two years. To list them would show a settling acceptance of diabetes, a path that has taken us from those early disheartening hours to a dutiful tolerance. Questions of how and why rarely come to mind. Only if someone asks do we even revisit the early symptoms or recount those first terrifying moments that greeted us in the ER. Diabetes has become, much like a new family member, a collective part of who we are.

Of course, there is still plenty to aggravate and worry us: the shots, the glucose testing, the danger that in any one moment we might make a mistake in its treatment. But diabetes is no longer the obstinate stranger it once was, and for all of us that’s a good thing.

Amongst the friends and family visits, we are planning, as we did last year, to drop by the children’s ward again today to hand out journals to children in the same situation as Lia found herself: sadly and dreadfully admitted to the hospital over the holidays. A year ago, it was a good experience for us, especially for Lia. This year the mood has changed, however. There is a bit less excitement for it. I’m not sure why that is, except to say that marking this day began as a way to commemorate both her sufferance and Lia’s (and everyone else’s) resilience in overcoming this adversity.

Those things are still important to us, as is spreading goodwill and the charitable news that journaling can help with healing. But like any new acquaintance, with time the newness wears off. You have watched them and learned and discovered the good with the bad and if they are to be important to you, you have grasped what it is about them that allows you to consider them to be relevant, if not a friend.

Perhaps it is that way, too, with diabetes. A familiar thing that cannot be ignored. But is it a reason to celebrate?  I don’t know. I am taking my cues from Lia, and this year it seems it is not. She appears just as content and happy to have all her family together in one place for the first time in a long time. And that’s something we all understand.

 

The Story That Keeps On Giving

It has been a busy past couple of months for us with teaching, writing and a little travel to New England for the Thanksgiving holiday. But I took some time over the summer to recap for a local magazine just what our first year with diabetes was like and I’d like to share it with you here. For many of you, this will be nothing new, both in terms of what you read as well as what you and your special little loved ones have endured. To be certain, it’s a story I love to share and with nearly another year having passed since Lia was diagnosed, the fear, the hope, and the love with which we greet every day has not changed. We’re still learning to live without envy.

Back Where I Belong

I tried it. I gave it a shot. It just wasn’t working.

The thing I liked about blogging about diabetes and our family, and of which I found most helpful, was the sense that whatever I was writing about was mostly for my benefit, or to share with others close to me and my family, either directly or through this amazing community of moms and dads and people with diabetes who live with the very same struggles with resilience, optimism and love.

Writing was and still is a way for me as a parent to process the hurt, the frustration, and the endless worry that comes along with this outrageous, childhood-stealing disease. It has never been about the simple sharing of information. I tried recently to change that on Without Envy. It didn’t work for me, for whatever reason. Maybe some day it will, but not now. For the now I am back where I belong. A bare bones theme, writing simply without envy.

Already it feels better.

 

Note: there are and will continue to be some opportunity for me to just share outside of the blog with readers. Here are two recent articles I wrote for Diabetes Health.

 

 

Mirror, Mirror on the Wall

Envy is often the fountainhead of unhappiness. We’ve all experienced it. A neighbor’s shiny new car. Their figure, the clothes they wear. What they get paid for the wonderful work they do. It starts on the playground as children and continues, I suppose, until dementia or death. It’s so prevalent and part of who we are it is the steam that propels even many fairy tales.

Mirror, Mirror upon the wall, Who’s the fairest of them all

Soon I’ll have that little mermaid, and the ocean will be mine

And someday, I’m gonna be a real boy!

While not all bad–think positive motivation: envy can encourage us to reach for the sky–overcoming a desire for a thing we don’t have (or in the case of malicious envy, wishing that someone else simply didn’t have it) is not easy. It is part of the human condition and ingrained in our nature to feel this way, as much as is self-preservation or procreation, or as Charles Darwin famously put it: our struggle for existence.

Coping with the green-eyed monster involves altering our perception of what happiness is. It helps if every now and then a thought or antidote comes along that makes reshaping our attitude easier to do, some reminder perhaps that acceptance of who we are is more important than our possessions or appearance or achievements. Unfortunately, such outside influences don’t come along very often. We usually have to find them for ourselves.

But not always.

This personally works for me. To fully appreciate the clip you could use some background if you haven’t seen it, but I’ll spare you. Watch the movie. It is one of the best ones ever.

Embrace. Kiss. Love.

How Can I Tell What I Think Till I See What I Say

I have mentioned before a particular fondness for a quote by the British writer E.M. Forster (and of which assumes the title of this post). It comes from his book on writing, Aspects of the Novel, which he penned in 1927. In this particular chapter, Forster is concerned with the subject of plotting and begins the section with a quote from a well-known Greek philosopher:

Character, says Aristotle, gives us qualities, but it is in actions–what we do–that we are happy or the reverse.

Forster then goes on to argue against Aristotle’s position, at least in terms of how it relates to what a novelist is charged with doing: illuminating the subconscious. Instead, he contends, happiness and misery exist inside the individual, a sort of a secret life of which there is no “external evidence”. He suggests that for a novelist to do this well, he must have command over all emotion and know in what direction the story is heading, what to leave in and what to take out.

I believe that, but to get to the point of why I think this is worth sharing on a blog that deals mostly with diabetes and raising a family, I should explain the context from which Forster drew his now famous line. In the chapter, he highlights the plot found in Les Faux Monneyuers, by André Gide, in which one of the characters, Edouard, a novelist, expresses his intent to write a character story about the struggle between reality and what we make of it, or as he puts it, a “slice of life” that leaves nothing out. A story about everything.

“My poor man, you will bore your readers to death,” a friend responds. “And what is the subject?”

“There is none,” Edourdo retorts.

“Have you planned out this book?’

“Of course not…I am waiting for reality to dictate to me.”

If this scene sounds similar you might recall the Seinfeld episode where George proposes to pitch a show about nothing. In Aspects of the Novel, Forster — and to some extent George — uses the moment as a means of suggesting that artists should become mixed up in their work, let it move them along, subdue them and tote them away, as it should the observer. The problem that Jerry points out, as does Edouard’s companion, is that truth in life and truth in art are not identical. All that is prearranged, Forster suggests, is false.

It’s a fact that he finally illustrates with the anecdote of an old lady who stood accused of being illogical. “Logic? Good gracious! What rubbish!” the lady exclaimed. “How can I tell what I think till I see what I say?”

This is, of course, at the center of what many of us who write about living with diabetes are after. To cut open, peel back and lay bare the truth of what life is like for us, to make sense of it and embrace it. To not let it hold us back. After all, to quote E.M. Forster once more, We must be willing to let go of the life we have planned, so as to have the life that is waiting for us.

I Didn’t Just Do That, Did I?

Being so new to this, there are probably a great number of things we do wrong when it comes to treating diabetes. But everyday brings us new levels of confidence and also, strangely, periods of disbelief and elementary head-scratching that make us wonder have we been paying any attention at all. It ‘s much like a daydreaming child must feel who, upon waking from their mid-morning trance, suddenly realizes the teacher has asked them a question. But they say success comes in cans, not can’ts, so fortunately we keep trying again and again, and just like that poor little schoolboy, begging forgiveness and hoping our mistakes don’t lead to something worse.

As opposed to writing about two of our bloopers, I’ll choose a more subtler way to illustrate. Can you spot the difference?

 

Always read the label

 

Double vision or over-confidence?