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.

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.

Defying Gravity

When you first learn that a child of yours has diabetes, if there is no family history of diabetes or the root of it is not otherwise obvious, and it rarely is, the parent will do not only whatever they can to make life with diabetes better for the child but they may also work tirelessly to pin down whatever it was that caused it. There is nothing unnatural about this because if you were successful at finding the cause of the diabetes perhaps you could keep it from bringing more harm to the child or other children, which is after all a parent’s first responsibility: keeping children safe. Of course with diabetes this is impossible to do and giving up on the search is usually the most helpful advice anyone can receive in terms of finding the origin. Not all of us, myself included, ever fully reach that point but it is helpful to know that the odds are stacked against us and any tidbit of information that helps shed some light on the topic is a gift.

What is possible, almost always, is for both parent and child to accept the situation for what it is and deal with it as best you can. This is important for several reasons but mostly because it is the reality and no good comes of hiding from what is real. Always in the end the truth finds you. Once you do this and are successful enough at it you can find little ways to defy the life-and-death seriousness of the circumstances and make good on the promise to live life to the fullest.

This last week we met with the reps of both Medtronic and Animas to decide which pump best suited Lia’s purposes. We had attended a class at our Endo’s office to hear spiels from the three top suppliers and had settled on these two, but were finding it a difficult decision as there were characteristics of both that we liked. So we invited them each out to the house on separate days to sit with Lia and talk about their pumps. Over the last few months we had made ourselves knowledgeable about pumping through books; and the internet and online diabetes community had provided us with a wealth of information and first-person experience. But nothing, we felt, could replace one-on-one, live conversation. In this way, we could relate our own experiences with food and insulin and the effect both have on Lia’s blood sugar and use these as our foundation from which we might sort through the gimmicky talking points and uncover useful information that would truly help guide us in making our decision.

Our efforts were not lost on Lia, as many of the things we do or say are not. During one of the sessions I looked over at where she was sitting in the small chair she had pulled up for the conference and I noticed she was holding a clipboard. She was making notes on it as the rep talked to us about her pump and afterwards, I asked her what she had written down. She handed me a single sheet of paper with the title: Cool things about the Animas scribbled at the top, and this, in her own words, is what followed:

  1. It allows me to sleep in.
  2. It lets me cosumize <customize> my dose.
  3. Let’s me manage things
  4. You can disconect for an hour and be flat.
  5. Have an infushun set.
  6. It has safety
  7. You can redial it.
  8. I can get a monitor from a long way away.
  9. Your water proof.
  10. Go to 0.025 units.
  11. It can tell you to check for keytones.
  12. Back up pumps.

Lia has never asked why she has diabetes. She has on only one occasion questioned what caused it and when given the answer equivalent of Who Knows, she walked away fine with that. She’s that kind of kid. A realist. A survivor. Don’t tell her it won’t hurt if it will, she will see right through that smoke screen and if she doesn’t she will the next time. Her own experiences have taught her that too.

A few weeks ago had I witnessed her writing this kind of list about a tiny little box designed solely to help keep her body functioning the way nature intended I would’ve mourned and written about her lost freedom and innocence. For sure there will be moments for that again, brief but intense outbursts of grief, frustration, even anger at her diabetes, at science and the medical community that has failed to find a cure, at the inability to uncover what caused it, and for how Lia has had to grow up much faster than anyone would want for a child. But it is this kind of thinking that it takes to move past the sadness and shock and get on with living. If a little blue box will help with that, then all the better. Just as long as it makes you waterproof.

Can’t Take My Eyes Off You

The bed shuttered slightly as the train passed out of sight in the dark just down the hill from my sister’s house. Franca and I were sitting on either side of Lia, holding the hair back from her face as she vomited again into a wastebasket. The nausea had come on just after midnight when she’d woken from sleep with a whimper, then jerking upright in the bed and clutching both hands to her mouth we hurried with her to the toilet. The spells of sickness continued every thirty minutes or so and after a while we stopped making her get up and shuffle through the hall to the toilet while trying to catch what we could with a towel and I carried the wastebasket to the bedroom and set it beside the bed. We checked her blood sugars and felt for a fever, and believed by the looks of the contents she’d thrown up that she was sick because of something she’d eaten, a clementine perhaps, or a cracker. By morning the vomiting had ceased and Lia said she felt better. She asked to get up and we did, relocating downstairs to the couch, but after a few minutes she was back asleep. Two hours later when she woke again, her urine tested positive for moderate to large ketones. I looked at Franca, she looked at me. Both of us knew what was coming.

We were there visiting my sister and her family for the weekend to attend a JDRF Walk to Cure Diabetes. It was our first Walk since Lia had been diagnosed and we were excited to be participating in such an event and moved by the opportunity to see and meet other people so intimately connected and familiar with juvenile diabetes. With my sister as captain, we’d formed a team, collected donations, had t-shirts designed and printed. For Lia and everyone of Team Liabetes this was our chance to experience firsthand the compassion, commitment, and community of which we all now belonged. But by now everyone was awake and there was a collective sense of dread in the room. No one mentioned the Walk. We knew we had to get fluids in her to bring down the ketones and we focused on that while we waited for the nurse hotline to call us back. So then Franca filled her in on the details and the nurse confirmed what we both had been thinking, that Lia should go to the hospital.

Hospitals, I think, especially emergency rooms, are typically not very good places for people who are sick and wanting to get better quickly. They are cold and impersonal, with form-letter questions offered and responded to in haste and in some cases not asked at all and therefore let unanswered, which may be okay if what you need is a broken bone set — all the proof is in the x-ray — but in caring for chronic illness you have to be on your guard, and in the overheard words of the doctor treating Lia, we looked like a couple of novices. Had I heard her then I might have had something to say about that, but later, after we took her back to my sister’s, well after the Walk had ended, it occurred to me that it wasn’t our lack of experience that had gotten us in trouble. It was our confidence, and it started really before we’d even left our house.

When you do something day in and day out, hour by hour, minute by minute, it becomes routine to you, and though it seems the first rule of diabetes is that there are no patterns, our watchdog treatment of it had become second nature to Franca and I. Checking blood sugars, monitoring food intake, giving multiple daily injections, observing activity, evaluating temperament, watching for signs of physiological distress. We’ve learned in the last four months to do these things in the dark, while half asleep, at work and in keeping a house and while struggling to preserve a strong hold to our family’s non-diabetic identity, and though we never feel like we have it licked, we do work hard at maintaining — a word I hesitate to use — Lia’s blood sugars.

The trouble with travel is believing that the confidence you carry at home is the same one that comes with you when you go to another place. I knew that it wasn’t from when Franca was gone to France. It may look and feel like confidence but away from home routines crack and break, they fall apart. There are too many new things to consider, new people, new foods, new lifestyles. If you let them they will get in the way of what has worked for you in the past and instead of having the effect you’re familiar with it has the opposite. When that happens it takes great courage to move beyond it.

We think it was something she ate, we said. Plus, there was lots going on, the car trip, then we stayed up later than usual. There was other company too, lots of running around. It may have just been the excitement.

Did anyone else get sick? the doctor asked.

No, just Lia.

The doctor looked over her vitals, checked her ears, peered down her throat. Asked her to take deep breaths. She stepped back and wrapped her scope around her neck. I knew what was coming and had already cautioned the doctor that it wouldn’t be easy. Lia would soon know this too.

The doctor looked down at her as she spoke. Well, little miss, we have two choices.

Okay, Lia replied.

We need to get some fluids in you to help your body get rid of those ketones. One way of doing that is for you to drink lots of liquid and stay here for five or six hours while it does its thing. The other is you let me put in an IV and you’re out of here in two or three.

I can go back to my aunt’s then?

That’s right.

Lia looked thoughtful. We had already talked about this, about how when she’d had an IV before, on the day of her diagnosis, her body was severely dehydrated. Then her blood vessels were collapsed and very thin, it’d been very difficult to insert a needle into them. Today was different. Today she was much better, stronger and it would hurt but not like before.

Lia made her mind up and when she spoke her voice sounded strange, far too grown up for the small little figure sitting up in the bed. Then I’ll take the IV, she answered.

The doctor nodded and left to go put in the order. Lia looked over at me and her mother.

I didn’t know what to say to her. Somehow sorry was just not enough.

A Fair Goodnight

Nighttime sometimes is the hardest. You wake, you think of her. Maybe you get up and check her blood, or just feel her shoulder and listen for breathing as you might a newborn. A slight nudge perhaps if you’ve caught her in a long mid-breath. Maybe you lie there in bed thinking and wondering and tossing and turning and watching the clock, waiting for something of a less pathetic hour to just go ahead and get up. There is certainty in waking, and while there’s no justifiable cause for worry, other than her diabetes, you cannot be sure of ever getting back to sleep. If there had been good reason to be concerned we’d have set our alarm and one of us would have been up anyway to check her blood. But when you go to bed thinking all’s well, we licked it today, we managed, there is a feeling of peace that comes over you and the nighttime you think will be restful and spent sleeping.

A few days ago it was just before one in the morning when she woke us. She was standing at the bedroom door, a small dark shape backlit by the nightlight in the hall. She was crying, sputtering through the sobs about a bloody nose. You could just make out in the darkness the little figure with both hands cupped to her face. We were both awake immediately. Franca walked her to the bathroom and in the light we checked her over.

The tiny bowl she’d made with the palms of her hands were pooled with blood, so I ran them beneath the faucet while Franca applied a wad of tissue to her nose to stem the bleeding. After a few seconds, she left to get a damp washcloth, then retrieve the glucose meter from another room, and I sat Lia down on the floor and leaned her back against the tub. The bleeding had stopped and she had stopped crying and the panic in her too had subsided. She closed her eyes and looked ready to fall back asleep. I washed from her face the smears of blood and asked how was she feeling. She knew what I meant and said fine. Franca came back and pierced her toe and checked her blood sugar. And she was.

We put her in our bed and laid next to her. The worry was over but not the response as we both found it difficult to return to the sleep we’d been lost in twenty minutes prior. Was the nose bleed somehow related to her diabetes, a warning sign that we should not take lightly, or was it dryness caused by high pollen? What if the meter was wrong? What if the reading was trending down and if we didn’t do something about it now she’d suffer a low? How much longer should we wait until we tested it again?

Honestly though, it wasn’t even these questions that kept me awake. These were things we asked ourselves everyday, all day long. We work very hard to anticipate and address these questions and are learning ourselves out of necessity to work just as hard on getting rest. You run yourself ragged if you don’t. What kept me awake was the fear that the fright and the hurt and the worry of something going wrong wasn’t ever going to go away. It is something that is with us for good, unlike a newborn which grows and flourishes, the same as a parent’s confidence. What kept me awake was the cruddy and erroneous suggestion that something as commonplace as an allergy-induced bloody nose might forever be connected in Lia’s precious mind to her diabetes, simply because we had tested her blood. The same as we do when she eats, or plays sports, or stays over at a friend’s house, or feels miserable or looks tired or generally acts something other than her usual illuminating self. What kept me awake was the wonder of just where does it all fucking end?

I know the rejoinder, it doesn’t. We’re not strangers to this anymore. I get it, this is the way that it is. But hold in the palm of your own hand this little girl’s life and tell me that that is okay. Tell me that we can control it. Tell me that it gets better. Even peace of mind can prove sinister sometimes in its motives. Lia is catching on to this fact and to some extent that is good, she needs to be burdened with the knowledge that to stay healthy for every decision she makes there is a consequence. But this awareness comes at a cost that as a parent I am saddened to see her pay.

Take for instance, this valuable diabetic lesson: This past weekend she was at a friend’s birthday party. Like before, I had her call and tell me what she was having to eat. She said pizza and ice cream cake, and I dosed her for both. Later, when I picked her up I asked how she liked the cake. She said she didn’t. I said what did you do about it then. She said I ate it. When I asked her why she said because I had to.

Whose Woods These Are

I went away the other weekend. It wasn’t a long away, just an overnight with a friend of mine spent camping in the mountains and fly fishing the next day. Franca had been back from France for a week and with spring and the weather turning I was eager to log some solitary time on a river somewhere. It’s not healthy to never take time for yourself, even if seems requited at the time, and while Franca and I have never treated our relationship with give-and-take reciprocity, we both knew I needed a break all right.

I am not a very good fly fisherman, I lack the resources required to give it the attention you need in order to become good at it. Often I go and never even see a trout. They are there, I know, their noses pointed upstream, wavering in the slick dark current, because I see other fisherman catch them or the satisfied angler comes clomping through the brush on the path along the riverbank carrying a string of rainbows, or browns, but mostly rainbows; nodding their head in my direction and raising their catch just high enough to catch my eye. I’ve never been that fisherman, nor that much of a braggart. Whenever I did catch fish, I let them go. It wasn’t for the fish that I went there.

The morning we woke at the campsite was cold. The firewood was damp and only would burn for a while if someone was not there feeding it twigs and blowing it back to life whenever it went out. We made coffee and ate fruit and toasted slices of bread over the stove and ate it with peanut butter while waiting for the sun to peek over the ridgeline and begin to warm things up. Afterwards we cleaned up and broke down the camp except for the tent and got into our waders and readied our fly lines and watched as the daylight slowly crept down the opposing mountainside until it reached the open meadow just to the south of our camp. Then we walked down the hill through the field and followed the sound of the river. We passed through a thin strand of woods and the river was there. It was wide and fast moving and shallow too except for a couple of deep-looking pools. Already several fisherman were scattered standing knee deep in the current in the various poses of fishing, but they paid us no attention as we climbed down the bank and into the river.

I left my friend at a wide open stretch of water where low hanging branches would not interfere with his cast and I walked up along the side current to one of the pools I’d seen. I did not see any trout, but trout like most wild things understand the importance of camouflage while man only knows how to get from one place to another as quickly as possible, so there is no guarantee I would have spotted them if they were there, which they were. I was encouraged nonetheless as I made my way upstream, choosing my step very carefully and keeping to the shallower sections where the brown bottom was clear and the current was slow and the footing on the rocks more reliable.

I stood at the edge of the pool, the water up to my thighs, my feet staggered against the undercurrent driving against my legs. In the pool the water was darker and the sunlight that passed through the glassy surface reflected off the tops of sunken boulders then was swallowed by the depths of the hole. I read the lay of the pool and fed out some line with a few false casts and then laid the fly down in a spot just upstream. The nymph at the end of my fly line lit on the water and sunk and the floating line caught in the current and brought the whole rig floating back towards me and I quickly began stripping line to stay ahead of it, feeling and watching for a strike, of which none came. I cast again. And again, and again.

For five hours I fished the river, hole after hole, bend after bend, one white-capped ripple after another. I stopped only for a bite of lunch and not once did I let my mind wander to think of needles, or of test strips, or of boluses and blood sugars. At one point a river otter passed a few feet away from me on the opposite bank and I watched after it as it went bouncing and bounding over fallen trees and rocks until it disappeared into a rock crevasse and I thought how nice it would have been for Lia and Krista to have seen it too. But mostly I thought of nothing more than just being a part of that river in every moment, letting my mind clear itself of the worry that had been with me the last three months.

Not long before this getaway I was sitting at my desk one workday when Lia called to say she was having a low. I thought about it and I told her what to do and hung up and sat there and thought of my wife and felt a bit of envy for her. How nice it must be to have a job away from home to occupy her attention. Not waiting for the school to call. Not dosing from long distance. Not sitting there wondering if the treatment I’d just given was right. That was foolish thinking of course. Occupation does little to free someone from the worry and stress that is the daily routine with diabetes. There is no such thing as down time.

But that afternoon on the river did something for me that sitting at home at my desk day after day could never do. It gave me permission to play, to take a small break from the worry. To let go. And take something back of myself.

At the end of the afternoon I sat down on the riverbank with my feet still in the current. I took off my hat and my sunglasses and closed my eyes and felt the river’s heartbeat with my own. It felt good. I felt happy.

On this Earth Day 2010 I encourage everyone to get outside and enjoy the peace and pleasure and tranquility that being in nature can bring you. It’s out there, on our planet. Go find it. Get involved.

The First Measurable Visit

The first three month endocrinologist check up started and ended with the same question from Lia: Why did my pancreas stop producing insulin? She asked it of me and her mother as we were entering the building and again later of the PA near the end of the exam. All of us of course said we didn’t know, but there are many things in life we don’t know and while admitting to that can sting a little when it’s your child asking the questions, it is an answer that parents, especially, and probably doctors too, grow accustomed to giving their charges. Besides, though this is one matter that deserves some clarity, the purpose of our visit on this day was not to explore the origin of Lia’s diabetes, but to measure its evolution.

Measuring things is an act that adults do very well, or very poorly depending on how you think about it. There are those who would say that you cannot even be considered grown-up unless you measure and can be measured, so the training starts at a very young age. We measure baby’s weight, their foot size, their length. We measure their social skills as they get older, and track their performance against other toddlers. In school we measure their aptitude, their athletic ability, the likelihood that they will succeed and at what occupation they are best suited for. As we get older we are measured by the car we drive, the size of the house we live in, how much money we have to spend on clothes, vacations, and appearances. We measure so much that quite often the values of those assessments grow and grow until they become bigger than ourselves and more important than any of the things that really matter, like playing pretend and running barefoot. Again, there are those who would argue this is the very price of becoming an adult, making true the words of the astronomer in The Little Prince that grown-ups cannot know a thing without having some means of measuring it. Only then can they know it.

Then you or someone you love becomes chronically ill and there are some things you thought you might like to know that just don’t matter anymore or you can’t find the energy to devote to them or you have difficulty elevating them in priority over other things. These things you may rarely talk about because they were once very important to you and losing a thing of importance is a very sad and difficult thing to accept. It is even harder to talk about. Plus, the illness itself brings a whole new set of measurements that take precedence and must be taken into consideration. Blood glucose levels, carbohydrate counts, basal doses, sensitivity factors, conversion rates, A1C, pattern management, logbooks, glycemic loads, prescriptions, medical supply orders, doctor’s appointments, pump classes, and the list goes on and on. It is this way with diabetes; you become preoccupied with measurements. And that is also very sad.

When you are a little girl who still ranks favorite things in terms of color, not cost, not prestige, not whether or not it is coveted by others, measuring something as strange as glycated hemoglobin is hard to comprehend, and while it is true that it must be measured to truly know the quality of her treatment, the concept itself is too grown-up, too alien. The plasma glucose concentration on red blood cells over prolonged periods of time is not something her mind should want or even need to assess. But someone must.

I accept that one day it will be her adult-self worrying over these figures, but will that day come sooner because of all the talk, all the focus, of all the three month interval doctor’s visits; and with its arrival will her days of playing pretend come to an end sooner than they would otherwise?

I hope not, but diabetes is a nasty, grown-up thing to measure and we are very new students to this and nothing is straightforward with it, not the carb counting, nor the dosage, nor the effects of exercise, nor sleepovers or visiting family or the answer to what should be a simple question.

The Part of the Pancreas

Most people don’t think much about the pancreas. Most of them of course don’t have to think about it at all. But there are a few who, because of events that have occurred outside of their control, must spend a great deal of thought deliberating exactly what it means to act like a pancreas. In drama, when actors do this they may create in themselves the thoughts and emotions of the character they are playing in an effort to develop a lifelike performance. It is called method acting. I like that. I like thinking in terms of practicality, theory and emotion. They are concepts very much suited for nailing the part of the pancreas.

The event that brought about this purpose in us happened last December, or actually sometime before, though we don’t know how long before and anyway it was December when we finally found out about it so there was no casting call, no audition, no understudying. This role was simply and crudely handed over to us. Nor, because of the sudden dismissal of the prior performer, was there any time alloted for rehearsal, though we were given the benefit of learning our part in the relative comfort of our home stage, with only one major exception. Nonetheless, if we are to believe our tutors, our training has gone rather well.

On opening night our hopes were high. The stage was set, our lines committed to memory, and the mood, as the audience was seated, was positively electric.

Characters

Lia, a happy, energetic young girl

Dad, a worrisome father

Pancreas, a Patton-esque figure suffering from an identity crisis, but still wants to be in charge.

Setting: Home and Little Friend’s House who is hosting an overnight birthday party. The time is Morning, Noon, and Night.

Scene I

Breakfast. That morning. Lia is sitting at the kitchen table, in theory testing her blood glucose level, but in reality farting around with paper and magic markers. Dad is at the refrigerator preparing her breakfast.

DAD. Can you please check your blood, sweetheart? (There is no answer from Lia). Lia?

LIA. What?

DAD. Can you please check your blood? (Lia puts down the marker and takes up the lancet device and pricks her finger, then touches the test strip to the droplet of blood.) What’s it say?

LIA. (Reading the meter) 276.

DAD. Really? (Lia holds the meter up from him to see for himself. He walks over to the white board and rights the number down. To the right of it he scribbles a calculation, and beneath that he adds up the carbs of her english muffin and banana).

LIA. How much?

DAD. Well, it comes out to 5H, but…

PANCREAS. 5 units is way too high.

DAD. Why’s that?

PANCREAS. It just is.

DAD. Could you be a little more specific?

PANCREAS. (Sighs with exaggerated exasperation.) Well, Mr. Amateur, for starters, she had pasta last night. You know the effect pasta has on her blood sugar.

DAD. Yes, but that was thirteen hours ago.

PANCREAS. (Ignores Dad’s comment.) Secondly, she has a party tonight and that means she’ll be running around, playing, yelling and screaming like her and her young friends do whenever they get together, generally making it hard for anyone else to think much less–

DAD. Can you just skip to the point?

PANCREAS. There’s no reason to get snippy.

DAD. There would be no reason for this conversation at all if you’d just do what you are supposed to.

PANCREAS. It’s not my fault.

DAD. Whose is it then?

PANCREAS. Blame those little white blood-sucking cells. They’re the ones gunking things up.

DAD. Whatever. I still hold you responsible. This is your job and you’re not doing it.

PANCREAS. You can’t talk to me like that.

DAD. I can and I will, now back to her breakfast. Why not a 5H?

PANCREAS. Because, if we want her to be a little high tonight so you don’t lose any beauty sleep worrying your balding head over her suffering a low, then you have to factor in the carbs she’ll use burning up all that energy.

DAD. It won’t matter, I won’t sleep anyway. But okay, what do you suggest?

PANCREAS. 3H.

DAD. (Looking skeptical.) 3H?

PANCREAS. That’s right. That should just about hold her steady at 125. Then this afternoon we can back off a little bit.

DAD. 3H seems low.

PANCREAS. It isn’t.

DAD. Why not 4?

PANCREAS. Because 4 is too much.

LIA. (Holding the insulin pen and looking a little peeved that she isn’t eating now that he made her put away her drawing things.) What’s the dose, Dad?

DAD. (Dad studies the calculations a moment, then looks over at Lia.) 4H.

LIA. (Lia sets the dose and gives herself the shot in the stomach.) Can I eat now?

DAD. Go ahead. (He walks over to the sink and stares out the window at the garden.)

PANCREAS. You’re welcome, but I think you’re making a mis–

DAD. Shut up.

Scene II

Lunch. Lia is sitting at the kitchen table before a plate of graham crackers, yogurt and a cheese quesadilla. In her hand she holds the blood glucose meter, which reads 89. Dad is standing over her looking perplexed.

PANCREAS. Told you so.

DAD. Spare me the attitude.

PANCREAS. Well, maybe you’ll listen to me next time.

DAD. Maybe I’ll have you replaced with one that works.

PANCREAS. Good luck with that.

LIA. I’m hungry, Dad. Can I eat?

DAD. (He looks at Lia.) Not yet. (He studies the white board where all the data has been collected.) What do you think? (Pancreas doesn’t answer. Dad sighs.) All right, I’m sorry. Yes, I should have listened to you.

PANCREAS. There, that wasn’t too much to ask, was it? My theory is we cut her bolus by half a unit and give a 2H.

DAD. Half a unit?

PANCREAS. You’re already factoring in her low sugar level. You don’t need to go overboard cutting the dose to match the carbs. This is lunchtime, remember. Her body converts energy differently than at other times of the day, but she still needs insulin.

DAD. Yeah, but cutting only half a unit doesn’t make sense, not with her sitting at 89.

PANCREAS. It will when you see the result.

DAD. And if not? This isn’t some lab rat were testing your half-baked theories on, this is my daughter.

PANCREAS. I know who it is, and my theories are not half-baked. They are based on millions of years of complex, fine tuning. Listen, just trust me, trust yourself. Together we’ll get her through this.

Scene III

In the truck, on the drive over to Little Friend’s house. Lia is sitting with her diabetes kit open in her lap and waiting for the meter to give her the blood glucose reading. After it beeps, she reads it and looks at him.

LIA. 241.

DAD. 241?

LIA. Yeah.

DAD. What time did we eat lunch?

LIA. I don’t know. Twelve o’clock.

DAD. (They come to a stop sign. Dad waves a pickup through the intersection. Lia is occupied putting her kit away.) What’s that all about?

PANCREAS. What’s what all about?

DAD. 241?

PANCREAS. Could be anything. Leftover carbs from lunch, excitement at going to the party. Could be the little cold she’s been fighting, or she’s growing, or–

DAD. Or maybe the dose wasn’t enough.

PANCREAS. It wasn’t the bolus.

DAD. Then what is it?

PANCREAS. I don’t know.

DAD. You’re a lot of help, you know that.

PANCREAS. Be patient. You’ll see.

Scene IV

Dad is home working on the computer when the phone rings. He answers it.

LIA. Hi Dad, my number is 122.

DAD. 122, really?

LIA. Yeah, and I’m having two pieces of pizza and ice cream with Oreo cookies.

DAD. I can do the pizza, but is it ice cream and a cookie, or Oreo cookie ice cream?

LIA. (Talking to someone in the background.) How much is 21 grams of ice cream, Dad?

DAD. (Dad walks over to the freezer and pulls out a container of ice cream and reads the nutrition information.) 21 grams is half a cup. That’s about two scoops, honey.

LIA. Okay. (Dad holds the phone in the crook of his neck and walks over to the white board to work over the figures.)

PANCREAS. What’s that?

DAD. I didn’t say anything.

PANCREAS. Oh, I thought I heard you say something.

DAD. I didn’t say anything because I don’t want her at 122. I want her at the higher end of her range like 170 or 180 before she goes to bed.

PANCREAS. Is she going to bed now?

DAD. No.

PANCREAS. Then back off.

DAD. All right, smart ass. What should I dose to get her to 180?

PANCREAS. How many carbs?

DAD. 58 grams.

PANCREAS. 1 unit.

DAD (Talking into the phone.) 1H, honey.

LIA. All right, Daddy. See you later.

PANCREAS. Just like that? No argument?

DAD. Do you want one? Cause you and I got plenty of other things still to talk about. (There is no response from the pancreas.)

Scene V

Dad is standing outside Little Friend’s house. It’s 8:30 at night. He rings the bell and Little Friend’s mother answers and leads him inside. He finds Lia sitting on the sofa with Little Friend and a group of other young girls. A movie is just starting to play on the television.

LIA. Daddy! (Lia jumps up and runs over and hugs him. She has changed into pajamas. Dad picks her up and holds her in his arms.)

DAD. How’s the party?

LIA. Great. Can I have popcorn with the movie?

DAD. Of course. (Dad sets her on the floor and finds her diabetes bag leaning against the wall in the corner and picks it up and takes it over to where Lia has settled back on the couch.)

DAD. Do you want to do this here? (Lia nods and jumps up and takes charge of testing her blood.)

LIA. Everybody watch. (The other girls follow her movements as she pricks her big toe and squeezes the blood a little too hard. She takes what she needs for the test strip and then pulls the foot to her mouth and licks the big toe clean.)

DAD. Nice.

LIA. (Shrugs.) What?

DAD. Nothing. Where do you want your Lantus? (Lia pulls up her sleeve. The meter beeps and they read it together. Dad stands then and fixes her bedtime dose and gives her the shot in the arm but winces as he pulls the needle out. A small dot of insulin appears on the surface of her skin. Lia winces too but she looks at her friends watching her and the look quickly disappears. Dad hugs her and whispers something in her ear. The scene then cuts to him back in the truck driving away.)

PANCREAS. What did you say to her back there? (Dad doesn’t say anything.) You don’t have to tell me, I was just wondering.

DAD. (Finally answers after a minute passes.) I told her she was the bravest little girl in this entire world.

Scene VI

Dad is sitting alone on the sofa with his feet propped up and a glass of red wine on the table beside him. The computer is on his lap and the television on. The phone rings and he answers it right away.

DAD. Hi Sweetheart!

LIA. Hi Daddy.

DAD. You getting ready for bed?

LIA. Yes.

DAD. You sound tired.

LIA. I’m not. We’re going to go to bed but we’re going to talk some.

DAD. That sounds fun. What’s your number?

LIA. 181.

DAD. That’s great, honey.

LIA. Ok. Goodnight Daddy.

DAD. Goodnight sweetheart. I love you. Call me in the morning. (Dad hangs up the phone. He looks out into the room at nothing in particular with a contented look on his face.)

PANCREAS. You did it. 180, just like you wanted. (Dad sits quietly.) You should feel good about that.

DAD. I’ll feel good when this night is over and she’s back home.

Scene VII

Dad is sleeping in bed beneath the covers, breathing heavily. The room is dark. Something startles him and he wakes suddenly. He leans over and reaches for the phone.

PANCREAS. What is it?

DAD. Was that the phone?

PANCREAS. I don’t think so.

DAD. (He listens but no one is there, just a dial tone. He sets it back down.) I thought I heard it ring.

PANCREAS. I didn’t hear anything.

DAD. Just a minute. (He gets up out of the bed and turns on the light and looks at the display on the phone, then he sets it back in the cradle and goes down the stairs and turns on the light in his office and picks up that phone and reads the display there and then sets it back down too. He runs a hand along the back of his head and walks slowly back upstairs and lays back down in the bed.)

PANCREAS. Everything okay?

DAD. I thought I heard the phone.

PANCREAS. She’s fine. We did everything just right.

DAD. I know.

PANCREAS. What time is it?

DAD. One-thirty.

PANCREAS. You told her to call when she gets up?

DAD. Yes.

PANCREAS. Then go back to sleep.

DAD. (Closing his eyes, whispering to himself.) She’s fine. She’s fine. She’s fine. She’s fine.

Scene VIII

Dad, looking tired and still dressed in his pajamas, is sitting at his desk looking at pictures posted online of his wife’s trip to France. Every now and then he glances at the telephone sitting on the desk, or at the clock in the corner of the monitor screen, or out the window. He is on his third cup of coffee when the telephone rings. He looks at the caller ID and smiles and brings the handset up to his ear.

Lonesome du Jour

It gets very lonely when there is just one of you because there is no one to share in the worry and fatigue of what has become a daily ritual so that the headaches and sleeplessness and frayed nerves are yours and yours alone. When being apart was something you were just planning for at a time when your child had been recently diagnosed with diabetes and one of you was going to be gone for a significant period of time it looked much easier to carry out those plans if you made travel arrangements of your own for yourself and the rest of the family. Then everyone could be removed from whatever drudgery had become the routine and make something new of it. But there is little to find good in a new regimen if it includes the same troublesome tasks and lively misgivings you had to begin with at home. You are just packing up and taking those obligations with you and then unpacking them in a place that for all its homeyness suddenly is made to feel alien and strange with this excess baggage.

Franca had organized and booked an eight day trip to France last fall for herself and several of her students. This came months in advance of Lia’s holiday diagnosis and though she no longer looked forward to the trip with as much anticipation as when she had planned it, she was the group’s leader and could not hardly cancel. Besides, originally the timing of it worked out well because it occurred over the kids’ school break so I could take them for a short visit to my mother’s, who lives five hours away, thereby lessening, I hoped, in some small increment the impact of my wife’s absence in our lives. The kids were due a visit anyway. We had intended to go at Christmastime and had not been to her house since last summer so the girls were anxious to get back. I was excited too as I found the idea of a change in scenery very persuasive. But mostly I went just so I would not miss Franca as much.

Her flight departed on Thursday. Lia, Krista and I left Saturday after Lia’s soccer game. Despite her afternoon activity, Lia’s blood sugar levels had been high since dinner the night before and by the time we arrived at my mother’s house around suppertime it had been hovering for most of the day in the low to mid 200s. We treated it and ate and went outside and played until well after dark with my sister and her three children, who had kindly come too for a visit. By 10:30 and bedtime, her sugars had dropped to 73. I treated it with two glucose tabs and set my alarm from 2:00 a.m., at which time it checked out at 83. Still worrisome, I set the alarm again to wake me up two hours later and check it again, where it read finally, 114. I fell back asleep beside her imagining that this is what it might be like if I were to do this always alone: Restless sleep interspersed with periods of wakefulness filled with an edgy worry over the balance of food, activity, stress, insulin, and excitement and what effect these basic necessities of life were having on blood sugar levels, and with no end in sight whatsoever.

Meanwhile Franca has been providing daily updates of her tour through Paris and the lovely and picturesque Loire Valley; of visiting grand chateaus and dungeons and ancient troglodyte caves; of eating mushrooms and escargot, and tasting splendid wines; then of driving north up through Brittany to Mont Saint Michel and Saint Malo, where on the bay each spring the crashing high tides transform the sea into a raging spectacle. I have been to Paris and traveled the French countryside with Franca before and though the weather this time has been wet and cold and her schedule hurried and crammed with events, this trip has been good for her. It’s been a chance to get away and experience the food, scenery and culture of a world foreign and vastly disconnected from what our lives have become since last December.

But it has been hard on her too, and not just in the way you might miss being with your family. Back in January we had all taken part in a clinical trial to screen for diabetes-related autoantibodies. Two weeks before she had left, the results came back indicating everyone’s test was negative. When Franca read her letter there was real sorrow in her eyes.

You’re disappointed? I asked.

She nodded.

You really hoped it would come back positive?

She had told me once before almost in tears that she wished she had diabetes too so Lia wouldn’t have to do this alone, so she would have someone there with her testing their blood, taking their shots, counting their carbs together. Now this letter had come in the mail informing her that the chance of that was low.

Since then nothing has changed. That is simply how strongly she feels about being away while in the midst of this life-altering adjustment. That no matter how far we travel, five hours or an ocean away, diabetes is with us wherever we we go.

After two nights at my mother’s and another at the house of friends, we returned home. It was a nice visit with mostly nice weather and everyone, especially the girls, enjoyed themselves, which was what they had both expected. I, myself, had not known quite what to expect — Family, camaraderie. Certainly not a vacation, not relief from the concerns and struggles that accompany diabetes — and so in return I have little to say about it, other than it was pleasant and I have few regrets. It was good to see everybody and it was good for them to see Lia too, so they can understand better what diabetes is to her and what her life and our lives are like because of it. But this trip was very hard because I was alone and Franca was not there to worry and hold hands and lose sleep together, so I can see the welfare in our staying put and accepting things as they are and not trying to tinker too much with them when there is only one of you.

In these early months after diagnosis, though, every new thing is a learning experience and someday, I hope, even the ritual will feel routine; but until then we have Lia’s sleepover at her little friend’s house, which means one more lonely sleepless night.