A New Utopia

Of changes we have seen plenty. My writing here documents most of them, those both good and bad, welcomed and unwelcomed, short-lived and long. But the one change I haven’t written much about is the one I hope is most evident and feel most strongly affected by and that’s empathy and effort. Okay, that’s two, but bear with me here, because really what more is the first when not shared with the latter but a singular, self-contained feeling. Empathy alone is only fulfilling half its potential. The capacity to put yourself in someone else’s shoes works best when it results in some meaning action.

It used to be my idea of utopia was forty acres of land and a house smack dab in the middle of it. Cordoned off in such way from what I perceived was a complacent, self-interested society poles apart from where I stood, I could live with my family in relative peace and quiet, pursing that one thing I felt above all would bring us me the most joy: my privacy. Living, in other words, in complacency and with my self-interest.

How could this be? I was no different than those I was wanting to shield myself from. In fact I was worse because I had the gall to deny it. I had a job. I had money. I had things. I had a voice, and when things didn’t go my way, I got mad as hell and retreated to my corner. I also was very unhappy, though unhappiness in and of itself is easy to conceal. It’s hidden all the time through the food we eat, shopping, big houses. Maybe content is the better word.

I am not suggesting that diabetes changed all that. It certainly helped (when I was done being angry about it). But I believe it began sometime sooner, a slow chipping away, if you will, of my very un-empathic exterior by the loving, steady, compassionate and utterly amazing life force that is my wife. She has always had, from the moment I’ve known her, a champion’s perspective for those less fortunate. What Lia’s diagnosis added to her efforts was a new level of urgency. This was not some nameless, faceless person I had to put myself in the shoes of, this was my daughter.

Looking through her eyes, imaging her future, her relationships, her connectivity to the world, I see a world in much need of help, and I’m not speaking of a cure, of better treatment, or awareness. I’m speaking of the struggles people face everyday, some like her, who must evaluate the many aspects of daily life that the rest of us may take for granted and then filter them through an alien, unpreventable, unwarranted, and often invisible condition. And yet. And yet as she gets older and settles into the real Her, I see a young person who is ready, willing and able to put her own self in another’s shoes and share in the emotion of their experience. To better understand them and when possible offer help. Empathy in action, that’s the biggest and brightest change diabetes has delivered upon us me.

Cruddy American Lesson #One

And so it begins, Z’s American High School experience.

First lesson: Winning is Everything. And if you’re not good enough to win, you can always fetch water.

Captain_America_ShieldSo, she tried and failed to make the volleyball team. No big deal. She’d only arrived from Germany roughly 48 hours before the tryouts. I’m sure that had nothing to do with the time change of flying halfway around the world, her first trip of that kind, ever. But I’m being too soft, too liberal, or maybe it’s too progressive. I don’t really know. Either way, this is high school sports, after all. No one said she was ugly or stupid. She just didn’t exhibit the whatever-it-takes to make the team (as a consolation, she was offered the role of manager, delivered via email, second only to texting as the most insensitive and cowardly way to deliver bad news).

Furthermore, if you were to read the school’s athletic handbook you would see that the program’s focus is to complement the academic development of well-rounded students by helping to develop character, discipline, team work, and other life skills that are benefit to the student/athlete. Complement. Not build. This is not Habitat for Humanity. Our high schools are not constructing gyms and stadiums for the poor, the homeless, the un-gifted.

Athletics is not about charity, it’s about winning. Or if not winning, by God, it’s about fielding the best possible chance to win. An objective shaped by someone’s opinion. Over the course of a two-day, four-hour evaluation. With little regard for character, discipline, team work, and any other life skill they might achieve playing against their peers. No, sir, it comes down to this one characteristic: Can you crush them?

Forget the fact that there are would-be student athletes all over the world battling various personal setbacks, hardships, and challenges to even muster the nerve or find the wherewithal to attend tryouts, much less have a chance to compete. These young heroes are having to fight poverty, chronic illness, societal and self-doubt, and a host of other formidable, never-ending obstacles the sports world would rather not think existed. To be sure, over-coming adversity doesn’t fit evenly into an athletic mission statement. It doesn’t cry out: We’re number one.

But kids facing down difficulty or, as in the case of Z, pursuing a dream despite the challenges, are, if anything, exactly the kind of competitors who belong on a team. The kind that believe that the will to go out everyday of their lives and do their very best is much more important than being crowned champion. These are kids who know the difference between winning and playing to win. I’d take a squad-full of that attitude over talent any day, hands-down.

And so here we are, with Z not even one week in this country, feeling firsthand the spirited, albeit blunt, competitive drive that has on the one hand made this country strong (and at one time, well respected), but on the other seeks to separate our young people into the haves and have-nots. That sounds to me like the exact opposite of character development.

I know, too, I don’t have the answer. Not everyone can be on a team, I get that. But then again not everyone wants to. Those who do, should. Period, end of discussion. To offer anything less is saying to our future generations and the world at large, this is the true American experience: to be better than everyone else at everything everywhere.

As we’re seeing both inside and outside these proud, imperfect borders, that kind of thinking is simply unsustainable. It is time we think of character, discipline, and team work as something more than just a feel-good phrase in a handbook. It’s time they become something we practice.

Book Review: The Thyroid Solution Diet

The Thyroid Solution DietFirst off: Don’t let the title throw you. This book is not just about the thyroid or those who suffer from thyroid related issues. Second: Anyone interested in extending their life should read it.

I have for years, since well before Lia’s diagnosis with Type 1 diabetes, been interested in the connection between food, exercise and physical health and this book, which falls along the same lines of Gary Taubes’ Why We Get Fat: And What to Do About ItDr. Bernstein’s Diabetes Solution: The Complete Guide to Achieving Normal Blood Sugars and anything by Michael Pollen, does a wonderful job explaining it using both science and a keen ability to speak in terms any layperson serious about their health should be able to understand.

Though the book does not speak directly to people with diabetes (and where it does it is doesn’t differentiate from type 2), it says volumes about insulin and maintaining healthy blood sugars. It is, in short, the hard stuff I wish our endocrinologist was either trained or knowledgeable enough to discuss with us. But Franca and I learned early on that taking care of diabetes meant TAKING CARE of diabetes. Not signing that task off to someone else.

But back to the book. I was much more interested in the first two-thirds in which Arem goes into fabulous detail about sugar, fat and how these foods breakdown and based on various factors combine with the body’s multitude of hormones (but especially insulin and leptin) to regulate/affect/and in many cases generally muck up the body’s natural metabolism (i.e. Garbage in. Garbage out, which reminded me a great deal of Alejandro Junger’s, Clean: The Revolutionary Program to Restore the Body’s Natural Ability to Heal Itself, which I also highly recommend from personal experience). The last third spells out specific recipes, which I may or may not use, but offers to those not interested in coming up with their own menus, excellent examples of not only what to eat, but when to eat it. Great information to anyone, regardless of what state their personal health is in, in terms of converting food to fuel as opposed to fat.

While I don’t agree 100% with what he says—for instance, I don’t follow the low-fat-is-better-for-you theories on health—rarely have I found a food book that speaks so clearly in terms of sugar, fat, hormones, and exercise, and also of aging, stress, sleep, and detoxification and the affect these have on not just our pant size but our mood especially. And that (the mood, not the pant size) is something we all can relate.

A Lesson on Atoms
(or Letting Go)

When it was early summer vacation and close enough to the end of the school year for Lia to still be considered an elementary student and not a rising sixth grader Franca and I weren’t sure what changes we’d make to her diabetes care plan to meet whatever new challenges arrived with middle school. Other than a few frustrating moments—a teacher withholding candy for some asinine reason, the immaturity and arrogance of young boys, chaos around the lunch bolus—school and her diabetes for the most part had gotten along. At least there were no panicked drives across town or phone calls that made us question why in hell we weren’t home schooling (not that had to do with diabetes anyway).

In fact, Lia’s school does a pretty good job of making us both feel like we’re not wasting our time sharing with them—sometimes more than once—facts about highs and lows, helpful tips for teachers of students with diabetes, unique details of Lia’s own treatment and management of her disease. They appear interested, concerned. They ask questions for clarification, offer personal testimony and eye witness to Lia’s strong character, her stoicism, her quietude and composure. By their words, or mostly with just their silence, they acknowledge this one true thing: In terms of diabetes, Lia is in charge.

It’s a question of independence and one that her mother and I were, and still are and will be for many years to come, struggling with as we sat down and talked about the upcoming school year. To understand why you must first have a child and then that child must get sick and be diagnosed with an illness for which is there no cure. Only then will you understand a parent’s worry of letting go. There is no other training for this, no software simulation that will help you understand. And, as I’ve alluded, children with diabetes make taking care of it look like a breeze. Poke. Test. And Bolus. Move on. Next lesson, please.

I’d like that to (but it won’t) help you appreciate our routine for the past couple of years which has been for Lia to call from a phone in the classroom, or the office, if necessary, and talk with one of us about her blood sugar before she does any bolusing. Same with lows. Call, then correct, or correct if you have to but give us a call right after. Because there is no school nurse, it’s just what we had to do. It’s what made us feel safe, because we were in charge, not Lia.

With age comes change however. Like atoms, of which humans are made up of many (about 7,000,000,000,000,000,000,000,000,000), diabetes is not something that can be divided. We cannot take some, say just the parts of it that keep her safe and sound, and leave the rest for Lia (those parts that let her cut in line if she has to pee, or drink juice during English class). As she gets older she’ll gradually assume more and more of the whole until there is nothing but worry and hope that is left for her mother and father. I don’t like it and would do anything to change it, but it is what it is. I can’t fight it. But what we give up we give up in the smallest of increments.

Already Lia is showing signs of her readiness—wrong word. Surrender, perhaps is more fitting—to take on more. So for middle school we’re giving her a new tool to help her succeed, but at the same time still keep us informed. With a cellphone, she’ll no longer have to endure phone calls standing in the doorway next to the hall, where kids are pushing and shoving past, jockeying in the way kids do, while trying to share with with me her blood sugar number. She’ll no longer have to take time out of her measly lunch period fielding questions from me that usually start with: So, how’s it going? As if I forgot she’s at school, and not a sleepover at Grandma’s.

Now—she’s been back to school for four weeks—she texts us from her seat. Before or after she eats, sometimes not at all, but those rare occasions we remind her of our expectations. She texts us, too, if she goes low and has to correct. She texts us other things as well—”Can BB (her friend) come over.”—but mostly she keeps her messages on topic, so she can get back to the things that a middle schooler finds important, like how in the world did anyone ever arrive at a number with twenty-seven zeroes. Okay, maybe that’s not exactly important, but it is, at least momentarily, a bit mind-boggling. Which will likely for her and most others pretty much sum up middle school.

Fix. It.

Not quite related to diabetes care, management, complaints of, progress in, fed up with, tears over, yada yada yada….but I think this relates to my recent post Hulk Smash, in which I reflected on my inability to fix things.

Annie Leonard’s project The Story of Stuff has always counted Franca and I as two of their biggest fans—we love the idea of Reduce, Reuse, Recycle and now this, her latest venture in responsible consumerism: Repair. Give a listen as she talk to the folks at Ifixit.org and instructables.com and maybe it will invigorate you, too, to think about how you fix something when it breaks BEFORE you buy it, or going when step further, how to make it yourself.

The Good Stuff — Episode 4: Fix it, don’t nix it!

 

You Should Know

Day 5 of Diabetes Blog Week. The topic: What is one thing you would tell someone who doesn’t have diabetes about living with diabetes?

 

This is a hard one for me. But it shouldn’t be. If you’ve followed my writing at all, you know with what vigor, emotion and honesty I’ve sought to unearth and define for myself—and for others—so many of the deep, troubling aspects of living with diabetes. I’m talking beyond the mechanics of blood sugar checks and carb counting, beyond IVs and Christmases spent in the hospital. Beyond shots and bruises and tender, hurt feelings.

These are things I never understood about myself or about life or creed or my family and the people I love. Tiny outlooks. Perceptions. Conclusions. Sentiments both large and small that arrived not at the end of some long and incredible journey as perhaps I once eluded, but which sank in slowly, over time, in the face of a mountain of resistance and struggles against them, turning them away, begging them leave us—leave her—alone. At some point there is nothing left to do but embrace them because they are all there is in this world and all there ever will be until such time as things change. And they will, one day.

Life is a revolving door. Attitudes come, attitudes go. We, too, change. We learn. We grow. We rise to the call. And I suppose if there is but one thing I would say to someone about what it is like to life with diabetes it would be that. It is a vocation, a duty, an occupation that knows no end, no weekend, no holidays, no worry-free golden years. From others it beseeches consideration, understanding, and for some: devotion, loyalty and a faithfulness that anything in life is possible with love.

A Tribute, of sorts

Franca and I work very hard and with much thought to not let Lia’s diabetes bring her down. There are good days and there are bad days and sometimes we have to work much harder and be much more creative than others. But the human spirit is resilient and we’ve found that sometimes all we have to do is let parenting get out of the way. It’s never easy to see this from just Lia’s perspective, but in most cases, Lia’s perspective is truly all that matters.

For instance:

One morning not long ago, my work was interrupted by a visit from Krista, our teenage daughter. Though I was very busy, I stopped what I was doing and gave her my attention.

Can you believe it? she said with excitement. It’s here, it’s here. It’s finally here.

What’s here? I asked.

The Hunger Games! she exclaimed.

Oh, right. I turned back to my work.

Aren’t you excited? she asked.

Very, I said. Maybe now you’ll stop obsessing so much over it.

Never, she answered and she smiled broadly and then skipped happily out of the office.

It’s true. She had been planning for the movie’s opening day for some time, had bought her ticket a month in advance and gotten her hands on every article of licensed clothing she could, every magazine, every photo. Now that the hour was almost upon her, her joy was simply too much to contain. For certain, it seemed to have the will and energy to last forever.

A couple of hours later, I was still in my office going over my notes for a research presentation I was providing to my local chapter of the JDRF later that night. The subject was the Artificial Pancreas Project and I was looking over the slide deck, when Lia came strolling in. What’s that? she asked, pointing to a picture of a small, handheld device.

That, I said, enables a continuous glucose monitor to talk to a pump to help manage blood sugars better. I scrolled back a couple of slides, to show her how the three things worked.

You mean they talk?

It’s like talking, I said. The CGM sends blood sugars to that smart phone-looking thing and it tells the pump how much insulin to give, or not give, as may be the case.

Lia’s face lit up. How cool is that!

Right, I know.

Can I see that first picture again?

I clicked back to it and I watched her face and she was smiling still and I could see her mind working through what that might possibly mean for her and I was surprised by her excitement and at thoughts that might be at that moment soaring through her head as she imagined the difference such a small, complicated thing would have on her every day life. And then I remembered back to earlier in the day and compared her joy to that of my oldest and the premiere of The Hunger Games.

Two children. Both thrilled. Each by something different.

Was it sad? Yes, to me it was sad as it highlighted something we struggle with everyday, keeping diabetes in its place, not letting it have free rein over everything else in life.

But after I thought about it, it proved something else to me, too, about diabetes, and especially about Lia. It proved that inspiration flows both ways. After all, even The Hunger Games can’t compete with a smooth-talking artificial pancreas.

 

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.

Food Envy

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..