Logbooks, Lows and Larry

Before, much earlier, a year or two prior to Lia’s diagnosis when all of our children still lived at home, including our now-collegian son, one of the kids would be given the task of setting the table for dinner. Then if they lingered too long afterward we would ask them to call their siblings to dinner when the time arrived. Normally that task would fall to Krista, because she was the middle child and because John, as the oldest, was pretty much head-dishwasher designee. So Krista, when directed, would turn and face the rest of the house from wherever she stood in the kitchen and lowering her voice as deep and as authoritative as she could muster would bellow, Time to eat (thus raising the ire of both of her parents — and our parents before — as with that kind of effort we could have done the job ourselves!).

But occasionally we’d feel sorry for John and his dishpan hands or, more likely, we would be thinking that soon he’d be leaving and Krista required some on the job training for when she assumed his dishwasher role, so he would be called to set the table. John is a funny fellow. He loves theatre and performance. For him, the world is truly an apron upon which life’s tragedies and comedies unfold. He takes nothing too seriously. The joy for him is in the presentation and the art of participation. On one of these role reversal occasions, instead of just calling his sisters to dinner, he walked to the bottom of the stairs and cupping his hands around his mouth as if speaking into a microphone, called out with curt, radio-announcer precision: Krista Bear to the office for a brain scan. Lia Rosa to the office for a brain scan.

It was funny and amusing, in a teenage kind of you-had-to-be-there-to-appreciate-it moment. For the sake of preserving the performance in my memory, I assigned his character-voice a name: Larry.

Larry is a solid guy, one facing life’s struggles head on, with purpose, optimism and resolve. He tells it like it is, without sugar-coating or dancing around the issue. Come to the office for a brain scan. No please. No handholding. No discretion. Just get there and get there now. I like Larry. He ma not be the kind of guy I’d want to share a beer with on a Friday night, but I respect him for that. His kind of stoic, no-nonsense way about him is admirable when it comes to addressing life’s more difficult challenges.

We all have a little bit of Larry in each of us. He’s the voice in our head who tells us what we should have said minutes, hours, or days after a particularly emotional incident. That take no crap kind of voice. That tell me you understand one more time, I’m going to lose it on you kind of voice. He’s forthright and bold and at various times we all wish he could be real.

I think of Larry whenever I sit down to decipher Lia’s diabetes logbook. The logbook is one I special ordered because we didn’t like any of the ones that came free with the meters or were given to us in the hospital. Designed like a teacher’s weekly grade book, this one has some real oomph behind it. It’s serious business. There are places to record blood sugar six times a day. Places to indicate food, exercise, carb counts. Places to record blood sugar before exercise and after. Places for daily notes and comments. Places to indicate normal and night basal rates for the pump. This logbook has everything. It is the bee’s knees of logbooks, as far as I can tell, thus justifying a $30 price tag.

Our practice has been once the week is finished, usually on a Sunday afternoon, I take the logbook off the counter and sit down at the table and highlight the blood sugar recordings in the following fashion: Low is red. Normal is green, and High is yellow. It gives us then a colorful visual image of how the week just went. The result is normally a neon-salad mixture, the week is never just green or yellow or red, though there have been days we cheered about where it’s normal all the way through. Mornings and evenings, however, seem to be the best bets for green. At night and the late afternoons are when the reds appear, and for whatever reason late morning and the middle of the day has the best chance of turning up yellow.

These are not rules, you could not set your watch to them, but they are the best information I have. So I sit at the table with this wondrous and marvelous tool at my full disposal and I try to interpret what exactly it means, something beyond just the colors. I analyze the food, the carbs consumed, I consider the dosage and times of the blood sugar reading. I compute and total and average and sum and divide and break all these figures back down again into their simplest denominator. Nevertheless, I glean very little as to why on one day the eggs and banana she had for breakfast caused her blood sugar to rise more than 150 points by lunch and on another day it dropped. Tuesday is pasta night at our house, always, for ever and ever. Last week on Tuesday her blood sugar dropped 100 points before bed. This week on Tuesday it rose by 100.

I scratch my head. I search for clues. I sift among this color-coded rubric of my daughter’s innermost recent history tormented by what it won’t tell me. I wonder what more I could do, the values we aren’t tracking, the variables not plotted, and I worry that it’s this very lack of knowledge that brings her to her mother or me several times a week saying, Mommy, Daddy, I feel shaky.

I know, there is much we still have to learn about this invisible intruder. There is much we don’t understand, and might never understand. This is indeed very serious business. It’s the kind that a made-up guy named Larry would tackle just for its incurability, because somebody has to, somebody must. We’re fortunate real people do, and in remarkably exceptional ways. But even Larry knows when it’s time to back away and let things cool a bit, and so it is with his same confidence and his same good judgment that draws me to close the logbook, forget about what was and disregard for a while the things that we don’t know and focus instead on the things that we do, such as family and sharing and life’s little funnier moments, and let these inspire our performance.

A Lattice Work Community

When I first worked with Les B. we were both Lieutenants serving under the same Brigade Commander in Operation Desert Shield on the Saudi Arabian peninsula of the Persian Gulf. It was a strange and difficult time for both of us and though our paths in the war never crossed, despite our close proximity, I was the beneficiary of his talent and leadership on the many days and nights spent waiting, planning and preparing for combat under the sound and protective construction provided by him and his fellow engineers. When the war ended one of my final acts before redeploying was to see to the thorough and expedient return to the US of several million dollars worth of war-fighting equipment. It was a frustrating, wearying and arduous task, but one fueled by the anticipation that at the end of it I’d be returning home after nine long months in country. When many years later I had the fortune of meeting Les in person, we had both changed from the young, passionate officers we once were to become dedicated, optimistic middle aged family men, each with a unique and pragmatic perspective of the world, but sharing a bond that went far beyond the brotherhood of war. He as the Executive Director of our local chapter of the Juvenile Diabetes Research Foundation and I as the father of a newly diagnosed child with type 1 diabetes.

I happened to be introduced to Les because after we came home from the hospital Franca and I, working fervently toward better understanding and caring for our daughter, tried to absorb every piece of information we could about diabetes. We had been told of the JDRF while still in the hospital and within a day or two of coming home had received our Bag of Hope. I then contacted our local chapter about volunteering. One of Les’ staff recognized our shared military history and forwarded my name to him. Then Les reached out to me. We met, we told stories and bragged in the way veterans will do. We talked about friends and challenges, old and new, and we talked about my writing and how I might be of some help in their pursuit of funding and finding a cure. Afterwards I went home, feeling strong, feeling invigorated, feeling part of a unit again, and feeling also the spirited burden of responsibility that carried back to those days of war, because this was a kind of war too and all wars are hell no matter the opponent and for my daughter’s sake, by God, I wanted a part of it.

Les warned me though. Ours is a volunteer army, he suggested, which I took to mean that help is there one day, gone the next. Life gets in the way. It happens with everyone. It will happen with me. But Les took it one step further: Imagine everyone touched by diabetes who is wanting to be involved, but think of them each as a single cell trying to fulfill a role, all for the greater good of the organism. If the cells communicate, everything works smoothly, it is their connectivity and combined energy and effort that makes the organism’s existence and achievements even possible. If that connection fails, disorder follows. Out of disorder comes disenchantment, and eventually disengagement. Those who wanted so badly to make a difference disappear. The energy they brought goes too and though the organism may still achieve great things, an important function of it is lost.

Diabetes is an awful, invisible enemy. We can write about it. We can think about it. We can quietly carry on with our lives and deal with it. What we can’t do, what no one can do alone, is defeat it. It will take work and money and when we think we have done enough work and spent enough money it will probably take even more. It will take sacrifice and building communities of individuals driven by this one compelling goal to form a lattice work of support, encouragement, and energy. Good things will come of it, Les assures me of that. It may not be a cure, it may not even have to do with improved technologically advanced treatments, but sometimes a community, like a couple of old soldiers found out, is about just a little bit more than its achievements.

There are others out there who need you. You, need you to be out there too, sharing in the support, becoming actively involved in the mission, raising awareness, holding hands, crying together, knowing you are not alone. A computer, a blog, other online communities are a great way to get started and spread hope and discover the many wonderful voices going through the same thing you are, but the true strength of a community is not in what they read, or what they say, or even in what they do, it is that they stand together, hand in hand, arm in arm, toe to toe, ready, willing and able.

Contact your local JDRF chapter today. Speak to their Outreach Coordinator, please talk to them about volunteering.

To make a donation toward finding a cure, please go to JDRF Donations.

A Simple Question

Things are getting better now, aren’t they?

I was standing outside my daughter’s school preparing to go in for a Valentine’s Day party when my sister asked me this question over the phone. I paused only briefly, my hand on the door. It had been seven weeks since Lia’s diagnosis and my sister and I had been talking about the management of her diabetes, but for some reason her question had caught me off guard. My very first impulse was to say, yes, yes, of course, things are going much better. To say otherwise would make me sound weak and incapable, a whiny victim to the situation. But because her question, when she asked it, had come at the end of our conversation, I was able to let it go until later in the day when I forced myself to revisit it.

Things are getting better, aren’t they?

It doesn’t sound like a difficult question and though my sister had the best intentions in asking it, it is not, I think, the kind of question that people affected by diabetes like to consider. Because without a cure, no is the only correct answer: No, things are definitely not getting better.

But on the one hand they are. We are better for having the knowledge of what we are up against, much like the early-yet-shocking discovery of a water leak is to a soon-to-be-shipwrecked sailor. Knowing is better than not knowing. You can react to such information. We are better for having a greater understanding of what diabetes is, for knowing how Lia’s body is unable to convert food into energy, how when this chronic condition raises her blood sugar, she turns thirsty and tired and irritable and how if it’s left untreated will cause her serious health problems. We are better because we discovered her illness sooner than later, so she is not part of the millions of people with undiagnosed diabetes getting sicker and sicker by the day. We are better because we have all, especially Lia, moved past the shock and fright and pain of the diagnosis and are taking very seriously every single daily aspect of her life-saving therapy. In these terms, yes, things are better.

Things are better too in that Lia’s classmates understand and care about her diabetes, as do her teachers and the school staff. We’ve become better mathematicians, better nutritionists, better fitness trainers and food scientists, better planners and packers and time managers, better family crisis counselors. What with all our focus on diabetes, we’ve even become better attention-getters.

What hasn’t gotten better, and what I believe is at the heart of the issue, is that the question hinges on the now, not the future. Where every day, according to the American Diabetes Association, up to 65 adults go blind from diabetic retinopathy. Where every day 128 adults with diabetes enter treatment for end-stage kidney disease. Where every day 195 lower-limb amputations are performed due to complications resulting from diabetes. Where every day insurance and the cost of care too often dictates the treatment. Where every day children become adults facing a life expectancy 10 to 15 years shorter than their peers.

Yes, we are optimistic. Yes, we are managing. Honestly, there is no other choice, and while I can say that today things are getting better — right now, right here, at this very moment, having just spoken to Lia myself, things are just fine — in an hour or two, or a day or a month or a year or twenty, who’s to say?

What, other than our own diligence, will keep her safe?

What, other than our own initiative and self-discipline, will prevent her from suffering as one of the tens of thousands who fall to those grim, terrifying statistics?

We are getting better because to dwell on these things is to dwell to no avail, like that sailor now clinging to the outside of his raft while adrift in a raging sea. At some point you simply must pull yourself over the side and pray that rescue is imminent. For that, we need a cure.

Compromise

How the dispute ended with us and sugar was not so much a compromise as it was a surrender on our part. But since surrender conjures in the mind images of winners and losers, making it a hard word for at least one of the two to swallow, especially if you’re an ex-soldier, I’ll settle with compromise. We agreed to let sugar back into the house provided there was less than a handful of grams per serving, and by handful, my oldest daughter would argue, means in the neighborhood of nothing that tastes like kid food — but in reality means usually not more than ten. No more sugar monopolies. Also High Fructose Corn Syrup was banned. Period. No discussion. In return for these conditions, we ate less, ate better, and were happier, healthier people because of it.

This compromise was “signed” two years ago, so when Lia’s diabetes was diagnosed you can imagine first, our shock. How could she have a disorder so connected to sugar? We’d already, healthfully — and inadequately so — addressed its role in our lives. Second, after the immediate worry of her recovery had passed, came examination. What did this mean to how we ate? What did it mean to the learnings from two years ago, all that time spent in the grocery destroying our eyes reading tiny ingredient labels, hours spent lecturing the kids the nutritional value of food, what of all our efforts and struggles and costs of eating healthily and responsibly.

To come to our house and eat is not to be met with extravagant dishes. They are good dishes to be sure, delicious in fact, but there’s nothing fancy or even of much variety from week to week. We found what worked for us and our family and lifestyle and stuck with it. Our menu, which we write on a white board each Sunday for the following week, reads pretty much the same:

Monday is meatless. We have laying hens, so you can guess what it entails.

Tuesday is pasta. Always has, always will. (We somehow have to make this work. This family is mostly Italian, we do well to limit it to once a week).

Wednesday, fish, venison or pork, and veggies such as kale, roasted carrots, and rice or potatoes.

Thursday tends to be somewhat of a repeat of Wednesday, though we try to work in beans, lentils, or some other legume. Kale with white beans is a favorite. During garden season, the fresh vegetable choices are phenomenal. Sautéed cucumbers, grilled tomatoes, baked zucchini, roasted bell peppers, Jalapeno poppers, boiled beets, green bean salads… I could go on and on, but it is still blustery winter outside and for my sanity I won’t.

Friday is wings, or fajitas, maybe tacos. Usually wings though.

Saturday is pizza. Homemade. Best ever. Hands down. Add a glass of homemade Chianti and there’s never any reason to go out for a pie.

Sunday is “linner”, lunch and dinner combined, and may consist of a roast or something grilled, more veggies, baked bread. When there’s time, my wife, who is the cook in our house, no question, tries recipes that are a bit more adventurous and they always turn out superb (Boeuf Bourguignon most recently. It was, in the memory of Julia Child, good enough to make you cry. Bon appetit!). But in most case we are a simple-is-better food family. So with our treaty with sugar in place and our dinner menu simple, homemade and fresh, what had to change with diabetes?

Not a whole lot, to be honest. In fact, eating for us has been the easiest adaptation we’ve had to make since her diagnosis in December. The hard part is dosing correctly, which is another story all together, one that keeps us up late at night and wakes us early in the morning and generally occupies our thoughts throughout most of the other parts of a day.

But as for the food itself, we think we’ve been doing pretty well with it. So well, in fact, I had intended, in honor of the many lists I’ve found on the web touting the top diabetic snacks, to offer up Lia’s Top Favorite Foods list (in fairness to her Kale would probably not be on it, or sweet potatoes!). But the more I thought about it, the more I started to think if someone out there hasn’t already come up with their own healthful best foods list, they probably shouldn’t start it online. Better to just head on down with their reading glasses to their local grocery market.

War on Sugar

When it was just the five of us and no diabetes it was the desire Franca and I had of eating healthier foods, produced more sustainably and responsibly, that drove us to declare war on sugar. It started, as many such conflicts do, as a simple disagreement over turf: our wanting food that was good for us versus sugar’s monopolistic saturation of the food industry. At the same time we were moving ourselves toward living more simply and off resources found closer to home and of the land, a rule of order that ensured our place as a steadfast enemy of industry. And finally, I was on a quest personally to lower my cholesterol without the use of prescription drugs. I had nothing against proven pharmaceuticals, but I felt if I could achieve the same results through modifications to my diet, I would be a better person for it. Plus, I hated the experience of having to take a pill everyday for the rest of my life. Now, of course, with insulin-dependent diabetes a part of our day to day lives, I feel ridiculous having even complained.

But such as the way things were back then, we chose Valentine’s Day, a symbolic gesture of our seriousness, as our date of revolt. Our strategy went like this: We would for a period of two weeks eliminate processed sugar from everything we ate. Everything. No cereal. No soda. No packaged snacks. No granola bars, no yogurt, no tasty coffee cookies.

Sugar was a worthy adversary, however, and an information-gathering, reconnaissance trip to the grocery forced us to add to the Do Not Eat watch list. Peanut butter, tomato sauce, chicken stock — yes, chicken stock, canned soups, canned beans, canned just-about-anything, crackers, chips, ketchup. This last one, especially, caused our family some heartache as our oldest daughter, Krista, was an addicted user, even dragging green beans through a pool of the red stuff in order to wash them down. Learning of ketchup’s betrayal, she immediately deserted and waged her own war against us as a full-time dissenter.

And so it went, with us rooting sugar out of concealment and it’s clever hiding places, banishing it from our cupboards and refrigerator shelves, and finding a more suitable, or in some case, no, replacement. Lia, for all of her six years, turned out to be an exceptional soldier, using her sharp, childhood inquisitiveness to sniff out the enemy on ingredient listings everywhere. Even Krista came around, by the end of the two weeks she had lost the equivalent of one grumpy pre-teen along with six unnecessary pounds.

The war ended eventually, as all wars should, and we made our peace with sugar. We had neither won nor lost. Sugar is back in the house again, but without unchecked reign over our pantry, so I suppose you could say we won the battle. Out of it grew new alliances: A garden, egg-laying chickens, closer friends at the farmer’s market, veggies that did not require condiments. Even my cholesterol played nicer, staying in check without medication for the entire next year.

Yes, we thought we’d done pretty well, and even if we hadn’t, in those days it was much easier to make light of our failures. Losing takes on different meanings depending on what’s at stake, and for us now, sugar — carbs, whatever you want to call it — is waging a fresh new war and the goals have become much loftier than life without a pill.

To read more on the perils of sugar, here is an in-depth article from Mother Earth News. In addition, there are plenty of myths surrounding sugar and type 1 diabetes, to see the facts please click here.

Without Envy

When the three of us arrived at this lavish resort there was much excitement and gaiety. It was sunny and warm and the hotel and landscaped grounds were elegant and stunning. We had travelled before as a family to other various interesting places — Paris, Rome, Belgium, Germany — but those trips were mostly family visits and Lia, the youngest of us, especially, could count on one hand the number of times she had stayed in a hotel, much less one as deluxe as this. For her, the very moment we entered through the enormous revolving door everything turned wondrous and magical. From the woodcrafted staircase and textured floors to the foosball table in the sports lounge, Lia was thrilled beyond measure.

The exuberance Franca and I were feeling was of a bit different nature. We had both wanted and needed to get out of the house if for no other reason than to shake the fresh hellishness of the holidays. Though our house was far more pleasant than the hospital, it had become little more than a cafeteria and nursing station, with around the clock food prep and health analysis. We had to get out and get away, in much the same way new parents must eventually venture outside the home with their newborn baby. We had to be tested. Could we handle the pressure? Did we know enough to control any situation? Could we be careful enough not to cause our precious little package more hardship? On the surface this trip was to attend a family conference on diabetes, that was our reason for being there, but on a much more innate level it was about us reasserting ourselves as parents, as the ones in charge. The Head Honchos. The first thing we did, of course, was screw things up.

Because we were in the car at the time we missed Lia’s afternoon blood sugar reading, which when we finally checked at the hotel came in at whopping 315 and should’ve been treated with insulin, but the time was too close to dinner for us to dose then. So we went downstairs to the lobby, where more people were coming in from the parking lot, and checked in with one of the volunteers, who directed us to the registration area. We signed in and walked and looked around the hotel some and by dinner her level had dropped to 237. Not good, but manageable. We juiced her and ate and listened with interest to the guest speaker, all the time believing that with her numbers trending down, we were back on top of things. Ninety minutes later, she complained of feeling dizzy. Her blood sugar read 49. We treated the low with juice and fifteen minutes later she was back up to 109.

Parents 1, Diabetes 0.

An hour after that she complained again of dizziness and was back down to 64. Tied up.

Fifteen minutes later, she tested at 59.

Advantage, Diabetes.

We were were exhausted, feeling outwitted and a little bit afraid, but thirty minutes later her blood sugars leveled out in the 120s and we went to sleep. At one o’clock, Franca took another blood sugar test. It read 271.

It’s maddening, this disease. We left home hoping to find something positive, some promise on which to build on our faith that one day our daughter won’t have to deal with this contrary illness. Instead, we found contradiction and opposition. We weren’t ready to leave the house. We weren’t ready to be put in charge again.

The next morning we rose and went about attending the conference, which went actually very well. Other than one minor afternoon low, Lia’s body did what we asked of it. Some of the speakers at the information sessions we attended talked over our heads, some not high enough. Mostly though they shared with us many useful things: techniques for coping, techniques for cooking, techniques for finding resources. They lectured us on the objectives of diabetes research and we met a number of people, in fact, who’ve been managing their diabetes for years, even decades, and been the beneficiary of such scientific breakthroughs. We made many helpful contacts with those who live near us and discovered a fellowship of like-minded people, who try to look past the wonderful, amazing assortment of tools aiding in the treatment of diabetes for a cure.

That is the real test, finding a cure, becoming part of that discovery. Perhaps only then can a parent lay down their heads at night and sleep without worry, without envy.