Your Brain on Diabetes

Other than early on when we had this beast by the tail and no idea what we were doing, there have been only a handful of occasions where we were   truly and very stressed for Lia’s immediate safety. Not that there’s not enough room for that kind of intensity (or insanity) in any routine that includes getting up in the middle of the night every night or delaying bedtime by fifteen minutes or more in order to check glucose levels just one more time, there is, and plenty. But since her diagnosis, outside of one sickness-induced emergency room visit, most of our distress over the last six months is of the complicated, long-standing nature that wide swings in blood sugar are reported of causing later in life.

Worry is worry, however, and the distraction to everything else in the world is the same no matter if it’s set in the future or comes from the past or the present. That was our thinking last weekend anyway when Lia suffered a low of the sort that jerked us square back to the moment and reminded us that this beast still has teeth and can bite.

It was Saturday, close to noon, and for breakfast Lia had eaten cereal with milk. Milk, depending on the type, sometimes has the tendency to raise her blood sugar hours later, and in fact when we tested her blood before a mid-morning snack it was above three hundred. Lia suggested the culprit was probably the cow’s milk because the variety she’d had wasn’t the 2% Jersey milk we’d recently switched her to and which seemed to keep her glucose in check, but the heavier Holstein whole milk. But because people, especially parents, are capable of believing whatever it is they want to believe, even when the truth is staring them right there in the face, both Franca and I chalked up her high to unknown factors and gave her a bolus to correct it. An hour later Lia was watching television when she told her mother she was feeling shaky, her preferred way of announcing to us: something’s just not right here.

Franca had tested her blood thirty minutes earlier and the mid-morning bolus we’d given her seemed to be working as she was now at the high end of her target range. But with Lia feeling strange she tested it again and the bottom had dropped out of it and Lia was suddenly looking and acting in a way she hadn’t behaved before with any other low. Her eyelids drooped, her speech was sluggish, she had trouble focusing. So she gave her a glucose tab and waited for it to take effect but grew more concerned when Lia complained that her heart was racing and she gave her another. When after another few minutes had passed and there was little improvement in how she felt, Lia started to cry and everyone’s confidence was then shaken.

I think you should go get Daddy, Lia said.

Franca offered her a juice box then and went and called me from the bottom of the stairs.

I came down and found Lia sitting in the chair, her eyes were closed, she looked to be sleeping. What’s wrong? I asked and sat down beside her.

Franca went through her symptoms as Lia looked languidly at me, then her eyes closed and her head lolled backwards. Honey, wake up. I patted her cheek. Can you hear me?

We were calm, but inside Franca and I were both on the verge of panic, each of us wondering was this what it was like when someone loses consciousness from hypoglycemia. Should we get the cake frosting? Was our next step the glucagon shot?

After a little more coaxing we got her to sit up and she drank some of the juice and we held her and waited for all those carbs she had eaten to do their thing. It seemed a long time in the way a long time can feel to the parent of a suffering child, but it wasn’t. Twenty minutes after her low was first reported Lia was feeling much better and back in her target range.

We spent the next few hours watching for the rebound high but it never came, proving perhaps that Franca had done well in treating the low so aggressively; and we kicked ourselves around the curb for not listening to Lia and going against our practice of not double dosing for the milk in the first place, a strange reaction when all you were trying to do was to make things right. But, like Elphaba learns, even good deeds can end in disaster.

The next day Lia’s numbers were perfect until the late afternoon when they shot back up over three hundred. We were visiting friends at their lake house, all of us: the kids, the dog, diabetes. The day prior was still fresh in our minds of course and Franca and I were both sporting that damned if you do, damned if you don’t attitude, so we dosed her for the high, because the devil you know is better than the devil you don’t know, and the devil right then was high blood sugar.

The bolus worked as it was supposed to, but the damage to our attention was already done. Still frazzled from the day before. Frustrated by the wildly swinging ups and downs. Exhausted from middle of the night blood tests. Sick of holding this damn beast at bay. Like the proverbial eggs in the frying pan, by the time we left that afternoon for the two hour drive home we felt as if our brains were fried.

We hadn’t been on the road long when Franca’s phone rang.

I wonder what we forgot, she said wearily and only half-jokingly as she took the phone from her purse and answered it.

We were all thinking what it could be, silently running through an inventory of what things we had brought when Franca said out loud: The dog.

Great, I thought, knowing the ridicule to follow. Fried and now scrambled.

Where Are We Now

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

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

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

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

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

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

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

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

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

Our Little House

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

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

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

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

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

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

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

Family Affair

For another account of the effect diabetes has had on our family since Lia’s diagnosis I’ll turn to one of our two other children. Though I am not always a very good practitioner of this, if you can be successful in getting them to open up honestly or are yourself perceptive enough, children can be a good gauge for ascertaining which things work well in a home and also for those things that do not. Sometimes, if a parent is in the midst of a crisis, as we were and sometimes still find ourselves, children may be the better and only true barometer for how well a family is functioning.

I’ve written some about them before: Krista’s worry over becoming diabetic herself; John’s thespian talent. But those were stories of them reacting to Lia’s diabetes and not real depictions of the ways in which they and us all were being made to change because of diabetes. That I have tried in some part to do on my own. Besides, change requires some level of acceptance and because it is not their body that has come under attack and must now be reliant on something external to keep them from harm, how could either of them possibly react in any other way but disparagingly toward its relevance and necessity?

I can remember when Lia was first diagnosed with diabetes there was a period of time where none of us knew what exactly it meant to have diabetes. Later that day, driving John and Krista to the hospital, I was asked about it — or maybe I just took it upon myself to inform them — nonetheless, I shared with them a few of the words I’d held onto from the doctor’s office: high blood sugar, ketones, pancreas, hospital. When those had left me and I had only my own worry to keep me I said nothing at all.The children listened and they were quiet too afterwards, of such little use was my ignorance. I can only imagine what they were thinking. What message of foreboding had I conveyed?

Since then, of course, we know more, and they too. So not long ago we asked our oldest, our son, to put down in words what Lia’s diabetes meant to him in terms of change. It was, we thought, a fitting request. John had been in deep water himself for some while on an unrelated matter and both Franca and I were interested in how diabetes may have altered for the better his own personal mindset. In hindsight, neither of us were prepared for his answer.

We had hoped his awareness now of this chronic disease had illuminated in him the need for direction, for finding opportunity and taking action. He would see in his sister just how fragile life can be and so with fervor would launch his pursuit of whatever bright future awaits him. Much like the mantra I use with my students at a writing conference I teach at each summer: How do I know what I think till I see what I say? I borrow this phrase from the English writer, E.M. Forster, in order to challenge them with this theory that even our own thoughts are a mystery to us until we take time to write them down, only then can we know their effect. This is what we were hoping to inspire in John. Revelation. Understanding. Acceptance.

Of course, roads everywhere parents travel are littered with ambitious pipe dreams for their children. This one was no different.

John’s essay began straightforward enough, highlighting Lia’s inspiring rise to the occasion of her diabetes, then went on to talk about the subtle changes to his eating habits. He mentioned, incorrectly, how his mother and I became incited, because of Lia’s diabetes, with corporate food processing and its effect on nutrition, specifically sugar. From there though the essay took a much more open and personal turn, as he accused his mother and I of constantly reminding him and his sister of how lucky they are for being healthy, thus adding more guilt than he already felt to the insurmountable truth of that fact.

I read this and at first I was angry. Constant reminder? Guilt? Blame? Where was the inspiration to make all he could of his life? Where was the yearning, the passion, the power of persuasion an illness like this should have over him? His essay wasn’t about him. It was about us, about me, about how Franca and I were treating him and his sister in relation to Lia’s diabetes. And that, as they say, is the rub.

I approached Krista and discovered that this was how she felt too and began to realize that although what we got from John wasn’t exactly what we had asked, it was honest and had required his private reflection. A parent can ask for no more than that and while it may not have been completely accurate, it did in it’s own way reveal a good bit about him (and us) and was, with some hope, inspirational, or at the very least empowering, for him to share.

So where does this bring us?

How do I know what I think till I see what I say?

It is nearly impossible under normal conditions for a family to know the aftermath our words and actions will have on one another. When you add something as frustrating and time consuming and as puzzling as diabetes, it’s a hundredfold harder, so the consequences are greater. John’s essay reminded me of that. He meant it not as a condemnation of our actions, though it felt that way as I read it and maybe even to him as he wrote it, but it was simply the view from another set of eyes watching out for the many dangers that lurk on this rough passage we now find ourselves. Like the view of the ocean from the ship’s crow’s nest, no other sailor aboard sees that vast body of water the same way. Of course there will be swells of uncertainty, periods of grief and solitude, far-off distant mirages that bring false hope, and also false sorrow. But there will be wonder too and the comfort of togetherness as we each rise above those occupational hazards to find that we are not after all alone, but a family.

And that much, I am happy to say, Diabetes has not changed.

Double Blind

Word of his death came to me in the middle of the night as I was making my lone way back to where he had lived. I had been far away visiting other family when his heart condition worsened to the point that I felt that was where I needed to be. I came as quickly as I could but he died before I arrived, in his sleep, at his home, with my mother and my siblings close by. He was old and tired and very sick and I will always have the regret of not being there with him at the end.

I wonder what he would have thought about this, my father. A patient himself of chronic illness for over two decades, what might he have to say about Lia’s diabetes? Would he accept it for the illness it was and as such assign to it his steady and unrequited worry, much as he did for his own incurable condition? Would he become an expert at her treatment, studying everything he could get his hands on in order to keep his grandchild from harm? Or would he, as he had proven himself in the past during times of child-rearing hardship, serve quietly and simply as our faithful companion as we went about our parental duties of caring for her?

His response, I imagine, would have been a grandfatherly concoction of all three: worry, preparation and support. But people will surprise you and my father was no exception to that rule and so in saying he would have reacted in any one manner over another would seem purely a guess on my part. Life is such the classroom that no one holds all of the answer keys. Instead, we all lack bits and pieces of information, some of which might be good to have, while others might lead to prejudice and like some scientific experiment skew the results, perhaps even sometimes favorably. There is no question, for instance, how my regret would have found closure had I prior knowledge of the minute and hour of my father’s last breath.

Such as it was, for months afterwards, whenever I visited my parent’s house I would wander and look through the things that my father owned and with which he spent his time: books, tools, containers and cartons of goods he’d collected over his seventy-six years. Amongst them I hoped to find some less rueful memory of him than that of my irreparable mis-spent time. Then I quit one day after my mother caught me in this act of inventorying his life and she looked at me with tears in her eyes and said, You walk around here and you see the places he used to be. I walk around and all I can see are the places he isn’t.

She was right, and my father, I think, would have agreed. We live each day blind to all the things we don’t know, about ourselves and especially about one another. We try as best we can to move past the hurdles, the biased and skewed results, the many unintended consequences, and look for meaning not in the things we own or the activities we pursue or even in the afflictions that haunt us, but in the simple, daily presence we share in the lives of those we love.

It has been almost three years now since my father died and that lesson is still not lost on me, nor has it sunk in permanently. Just the other day I was in my garage and I opened the door to the extra refrigerator we keep there and several bottles fell from the shelf in the door. One of them shattered on the floor. I cleared the mess and saw that what had broken was a bottle of non-alcoholic beer. The beer had been bought for my father during one of his last visits to our house, I couldn’t remember which. With so much time having passed though, I don’t know why I’d chosen to hang on to it, other than it was his and as such had become a part of him. More likely, I was just not throwing it out as I was keeping it for some intended purpose. As it were, I cleaned up the bottle to throw it away but before I did I thought to check the label to see if there was a date that might suggest just how long the beer had been lingering in my cold storage. It read: Best if used before October 2007. One month after his death.

Strangely, I felt only a tinge of grief over throwing the broken pieces away, just as it finally felt right to stop wandering his house like some misinformed ghost hunter. I was never going to find him in any of those things, and it’s true I’ll never know how he might have reacted to Lia’s diabetes, you can bet he would have handled her with tender loving care. Of that much, I am certain.