Without Envy

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.

We recently had the pleasure of having my mother in for a long weekend. She is an interesting case, one you will read more about one day soon as the story she is writing for herself of her golden years is one every adult, young and old, should hear and if, possible, embrace. My only wish is that she hadn’t taken so long to get to it, but as I said, that’s for later. This post is about food, or, I should say, it’s about love, happiness and taking care, and mostly it’s about pleasure.

My mother starts it off because she was the one visiting and sitting at our kitchen table and asked, “So, what’s for dinner?”

From America's Test Kitchen Healthy Family Cookbook

It was a simple enough question, one posed every day of the week, I dare say, in most traditional households. In fact the answer, my mother most probably knew and had already read for herself, was written on the whiteboard menu we keep on the door of the fridge (in this case, Asian Chicken Lettuce Wraps from one of our favorite cookbooks, America’s Test Kitchen).

But dinner at our house is not just about sustenance, you can get that anywhere, especially if you’re willing to push health, taste and sustainability aside. At our house food is a centerpiece, as much as any artsy heirloom or family artifact passed down through generations. It is the meal, or the experience of eating real food, that has become our handiwork and our pleasure to create — thanks entirely to Franca, who embodies the ancestral spirit of cooking that can transform a kitchen into a blank canvas and beg of a visitor to ask, What’s for dinner?

Next week on Food Envy: Baking bread. It’s easier than you think..

I love science, I always have. I can remember as a little kid sitting glued to the television watching episodes of Nova or Carl Sagan’s, Cosmos, or reading works by Asimov, Bradbury, Clarke, and being enthralled with the notion of exploration, discovery, and observation. Then, anything was possible.

Like so many others though, as I got older I drifted away from science, or rather, what the playwright George Bernard Shaw once fondly wrote is the venture that “never solves a problem without creating ten more.” Sadly, perhaps that’s the commentary of adulthood, the limits of time, space and attention subjecting the study of science to the status of just one more mind-boggling, homework-laden course the kids were taking in school. And the years went by.

Strangely enough, in the months leading up to Lia’s diagnosis for type 1 diabetes I was enjoying a resurgence of interest in science, brought on perhaps by my reading of the book by Bill Bryson, A Short History of Nearly Everything, or more likely a result of my writing and a literary desire to be accurate and precise with details (it sounds better anyway, than just saying I wanted to know the answer the next time one of my kids asked me a question about the relationship between particle movement and temperature. Still not sure I could explain that one).

Either way, as a writer and now as a father of a child with a chronic illness, I spend a good bit of time reading books and browsing journals with a dedicated science flavor to them. Some I come across go over my head and it’s those presenters and authors who, like Sagan, have a talent for bringing the topic alive and in terms I can understand that bring me the most benefit and also the most pleasure.

But the wheres and whys and how-comes and this-and-thats of diabetes take my interest in a science to a new, intriguing level, where it’s not just for enjoyment or enlightenment that I read and follow the research surrounding the treatment, prevention and cure. It has in our home a real and hopeful application.

Science and a real world connection. Envy, indeed. Granted, there’s more that a father might wish, but what more could a little boy ask for?

“Don’t worry,” she said, “I’ve done this before.”

I looked skeptically at her–this superhero, who had in her life done many brave things–where she stood very pregnant near the bottom of the stairs of our house, the keys and the phone in my hand, ready as the faithful sidekick.

“Really,” she went on, one arm cupping her rotund belly, “they just started.”

I followed her into the kitchen, where she poured herself a glass of water. “How long then?”

“A couple of hours at least.” Her answer did little to relax me, deep down or on the surface. “Listen,” she went on, “if it’ll make you happy, I’ll call my sister and let her know what’s happening so she can be prepared to come get Krista. Later, we’ll call the doctor.”

I nodded okay, after all she had done this before.

And honestly, I had too. But Krista’s birth was different. For starters, she had come in the middle of the night, where middle of the night was for sleeping, which meant driving to the hospital then, but especially all these years later in my memory, was like being in a dream. Ethereal. Illusive. Following that, the labor had lasted only four hours, which meant if my math was correct now, we were wasting precious time.

So we waited.

An hour later, Franca came outside where Krista and I were playing and sat down on the steps of the porch. I came over. “Everything okay?”

She looked at me. “I think we need to go.”

“But you said we had hours.”

She flashed a look at me: Don’t.

“All right,” I said. I nodded up the drive where Krista was merrily pedaling her tricycle around. “What about her?”

Franca groaned.

“How far apart are they?”

“Three minutes.”

“What happened to four through nine? Never mind. How long before your brother-in-law gets here?”

“I don’t know.”

I looked up the drive. It was Sunday and a pretty Labor Day weekend. “Should we just take her with us?” With a comment reminiscent of her earlier false assurance, Franca said to give him a few more minutes.

The few minutes passed with no sign of Krista’s caretaker for the next several hours so I helped Franca to her feet and got her to the van and was on my way to reign the little one in when my brother-in-law showed up. I handed him Krista before he’d fully stepped out of the car. “We’ll call.“

We left the house and I called the doctor. “I’m not sure we’re going to make it,” I said. The hospital was across the county, a thirty minute drive in good traffic. On a Sunday afternoon in which every mall between here and there was hosting A Sale to End All Sales, it could take twice that long (naive me was still trying to do historical math). The doctor was very calm and nonchalant, like we were just friends lost on the way to their house for the holiday bar-b-que. “Just buzz me if you stop at one of the other hospitals and let me know which one.”

In the passenger seat, Franca was groaning, saying Oh, Oh, over and over again. I kept my eyes on the road. A minute later, hardly two miles from the house, I dialed 911. The 911 operator patched me through to a State Trooper. “Where are you now?” he asked after I explained the situation.

I told him.

“Which hospital?”I gave him the name and he said to me: “Well, sir, I don’t know what to tell you. I can’t give you permission to speed.”

I glanced at the speedometer. It read somewhere between 90 and a gazillion. “Listen,” I said as I pulled up to an intersection and using the turning lane inched up to the red light far enough to see in both directions, then pulled on through, “unless you know something about delivering a baby, I need somebody who does.”

The Trooper replied, “Hold on.”

The next voice I heard identified himself only by name, which I found out is not very reassuring in the midst of a looming crisis. “Is this a paramedic?”

“You’ve reached the rescue squad.”

“Where, which one?”

He gave me the location. Only another five or six miles further down the highway. “What do you want to do?” he asked. “Pullover on the side of the road?”

“No, I’ll meet you.” I thought about where. I wanted to get as close to them as possible without having to deliver the baby myself, or worse, Franca delivering while I was navigating holiday traffic in a miserable old mini-van traveling a hundred miles an hour. “Do you know the new Ruby Tuesdays?” I asked.

“The one just up the road?”

“I’ll meet you in the parking lot.” I hung up the phone and looked over at Franca. All the while I’d been keeping my eyes off her, afraid of what I might see. “Just a bit further,” I said.

A mile from the restaurant her water broke. I didn’t know what to say. What could I say? Hold on. Lay back. Be steady. All of these things sounded appropriate for a normal delivery, but for this, I don’t know. They sounded just beyond that. So I said what I learned in Lamaze class when she was carrying Krista. “Breathe. Okay. Breathe.”

We pulled into the Ruby Tuesdays and parked in an empty lot beneath a tree along the adjacent strip mall. I got out of the van. There was no ambulance in sight. I came around and opened Franca’s door. She looked at me and I looked at her.

It is moments like these, just two people struggling against odds they can’t even begin to imagine that make life so interesting.

“I think I should take off my shorts,” Franca said.

I looked down at the only thing of any substance between that baby and the rest of the world. “Do you think that’s a good idea?”

“It’s the only idea.”

I looked across the lot and down the road for the ambulance. Still nothing. I opened the sliding door, wondering even as I did how I’d move her from the front seat to the back without introducing gravity to the situation. Then I heard the siren. Franca had heard it too and fallen quiet either from relief that help was arriving or her acceptance of the fact that she was about to deliver a child right there, in the next few minutes, in a parking lot.

The ambulance pulled up and two men stepped out. One of them checked her out. “Okay,” he said. “We better hurry.” The other brought over a gurney and they lifted her out of the van and rolled her into the back of the ambulance. She looked up as they shut the door. Neither of us spoke.

Inside the ambulance was a scene like you hear others only joke about. For everyone’s sake I’ll spare the details but to say: when it was over, and it was over very quickly, I got to cut the umbilical cord. And afterwards there was Franca, fully reclined in the back of the ambulance, clutching our daughter to her chest, looking exhausted but at the same time calm and composed, like any veteran superhero.

Happy Birthday, Lia Rosa!

9.2.01, 6:51 pm, in the back of an ambulance

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

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

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

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

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

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

I hope you will join me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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