A Tribute, of sorts

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

For instance:

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

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

What’s here? I asked.

The Hunger Games! she exclaimed.

Oh, right. I turned back to my work.

Aren’t you excited? she asked.

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

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

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

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

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

You mean they talk?

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

Lia’s face lit up. How cool is that!

Right, I know.

Can I see that first picture again?

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

Two children. Both thrilled. Each by something different.

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

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

 

Lending to a Wounded Hand

I’ve been thinking of what to write for this post for some time, going all the way back to last summer when I first began to see for myself the dangers of what I will call over-volunteering. It sounds strange to me even now, all these months later, quantifying the effort I applied to finding a cure for type 1 diabetes like it was some sort of muscle I’d worked to the point of straining. As if I—or anyone else—could do too much to bring an end to it. I can’t. There is nothing I wouldn’t do or give to heal Lia. Period.

But last summer I started to realize something important, something more critical to her care—and my own well-being—than fundraising, research and to a certain extent brotherhood: you must first make time for the present and learn what it means to live with diabetes in the now.

Staying fixed in a tragic moment is hard for any parent, and so very hard for a father who wants only good things for his children. You find yourself always looking ahead for the way out. When the truth is, there is no escaping this.

Our first introduction to the Juvenile Diabetes Research Foundation was at a family retreat we attended one month after Lia’s diagnosis. I can remember quite vividly sitting through the various seminars feeling like I was lost, and I was, like some naive countryman having stumbled upon someone else’s battlefield. I had no idea even what kind of war we were waging. Still later while writing about it, my focus was not on the daily onus of survival but on a clinical trial that afforded me some genetic and vaguely-understood glimpse into the future, a worthwhile effort to be sure, that might help us see if the same thing could happen elsewhere in our family, because even as children we know that monsters can’t hide behind doors that don’t remain closed.

I discovered too there were others like us and it was comforting to know them and to hear their stories and the stories behind the volunteer army that had staged this special event. I was inspired by their mission and especially by their commitment. And so after the retreat I did what anyone might do, I signed up.

One month later I wrote about that lattice work community and how I felt strong and invigorated, compelled by the burden of everything that is good about fatherhood to join the cause and fight to deliver a cure. How could I not? It was my daughter, my Lia who stood to benefit. Just point me, I said, in the right direction.

I was warned at the time that like a cellular organism victory rested not with one individual but on the unified strength of an entire community, and I knew from my own experience that was true of any war. But this was no ordinary war, and the analogy was wrong. Only last summer did I finally start to piece together why.

First, let me say something about a cure. I believe in it. I believe in science and I have faith in the work being done to rid the world of this disease. I support it and will always. I don’t think this way because I have no other choice. I do. Just as Lia will have a choice of her own to make when it’s time. But it is my right as her father and parent to believe that one day there will be a cure for type 1 because I want the best for my daughter and that means living without diabetes.

I believe also in volunteering. Before Lia had diabetes, we worked every summer for the Special Olympics and our time spent there was as rewarding and as special as the name implies. Volunteering, caring for others, caring about others is one of those things that separates us from every other animal on the planet. But we all, myself included, need to aspire to give back as a way of life, not an occasion.

But having diabetes, I now see, is not like any other war, so much so that I’d like never to use that analogy again. This, what we do day in and day out to treat this disease is not a war. War implies two sides and when that person hunkered down on the opposite end of the battlefield is your own body, well, you can see, the comparison just doesn’t fit, and therefore, neither does the role of a volunteer army.

We are, each of us, first individuals and what I had failed to see was what Lia needed most from me was not a hero, not someone larger than life swooping in, giving  their time and their energy to rid her of this awful, invisible thing. What she needed from me was just to be by her side, to help her and hug her and hold her hand, to love and stay close to her here in the present.

She tried to tell me that in many ways. Every time I got dressed up to go to a board meeting or attend some event. I thought it was just her innocence talking or her not liking that daddy was leaving the house. I thought I could do both, be a caretaker and also a knight. Now I believe you cannot. Before you can swing a sword, you have to know how to sharpen it, and that is the point of this:

Learning to care for someone with diabetes takes time, it takes patience and paying close attention. There isn’t the benefit of knowing firsthand what it feels like for your blood sugar to drop, or go high, or your thoughts turn angry by this thing that is such a part of you and at the same time so utterly out of your control. I don’t know what it is like to carry diabetes inside you, other than as a worry, which is why even now I still feel implored to connect this metaphorically to an epic conflict, as if it were Me against Them. It is not. It is Me, and then it is Lia. It is All of Us. Individuals.

Within weeks of that first visit to JDRF, I was mentioned to chair the Walk Committee, then asked to join in another leadership role and was invited to serve on the executive board. By summer, I had become a regular presence in the office, both figuratively and literally. To an outsider, it surely must have looked, as some have mentioned, as if I had drunk from the proverbial Kool aid (an even poorer analogy, if you ask me.)

But then, in the middle of last year I began to see things more clearly and I came to the conclusion that it was a mistake to jump like a general headfirst (and headstrong, I might add) into the foray of finding a cure. I decided it was best to take baby steps, even if that meant backing up, so I could spend whatever amount of time was necessary to learn more about diabetes and what entails taking care of it today, not tomorrow, not for the someday there comes a cure. This moment. Right now.

I do still volunteer with the JDRF, but in a slightly lesser role, and the chapter, I’m encouraged to hear, is working on developing a more effective volunteer program that benefits everyone, not just fundraising. It’s a tricky situation when someone with passion and goodwill comes strolling into your office. You’d be a fool to turn them away. But also I think, and more importantly I believe my chapter thinks, at least in theory, that there is an obligation as well—to borrow from a past U.S. President—to ask not what they can do for you, but what you can do for them, because diabetes is that kind of disease. Where everyone could use a helping hand.

Payday

Back in the late summer my local branch of the Juvenile Diabetes Research Foundation invited me to take part in, among other things, the logistical and production planning of this year’s Walk to Cure Diabetes. When the offer came, I thought it was long overdue as Franca and I had been noodling them since Lia’s diagnosis to become involved volunteers. But I had little appreciation then for the challenges of finding essential work for people like us, with strong passions to give their time freely. What I did understand was that in addition to doing what we could to help raise money for a cure, what we were most needing then, and still now — and of which has been the topic of many WE posts — is a community of which to belong.

Lia’s diabetes and my working role with JDRF provided me the opportunity to not only experience such a community, five thousand people strong, but it gave me the good reason to push my chair away from the desk, step away from keyboard and writing and do a bit more heavy lifting with my hands. I had been feeling drained of both emotion and creativity and could not have asked for better therapy.

It was Albert Einstein who said, “People love chopping wood. In this activity one immediately sees results.” With The Walk this past weekend, I caught myself thinking wouldn’t it be great if finding a cure were just something that needed a bunch of us to haul it or build it or power it. It won’t be of course, but it was nice for just one day to feel like I was doing something other than waiting on someone else.

Thank you to all who donated in honor of Team Liabetes, and also to those who gave their time to put on this wonderfully optimistic event. It wasn’t until two days later, while sitting at the table for breakfast with Lia that I understood the impact it had on her own confidence.

She said to me: “You know what, I think I am starting to not mind having diabetes.”

It’s not a cure, not by any measure, but for a life without envy, it’s sure as hell a great start.

For a few pictures of the day, please check out Without Envy on Flickr.

The Genius of Intuition

There is something I just don’t get yet. For as long as we’ve been administering Lia’s insulin through a pump we routinely find ourselves relying on intuition when determining her dose. A word problem of how this happens might look something like this:

Lia and her dad are on a field trip to visit a Native American settlement that had been founded and recreated along the banks of a very old river. It is a three hour car ride from school, for which they program a +30% temp basal. They arrive and while watching a documentary film of the tribe, Lia indicates she’s feeling shaky. Fearing a low, they apply an alcohol swab to her finger and check her blood. It reads 331. To bring it down, the pump suggests a dose of 4.10 units of insulin. The two of them talk and decide that 4 units is just too much, especially for the way she is feeling. They agree on a dose half that number. They finish the film and go outside and stand in the rain to watch a demonstration of primitive hunting, after which it is lunchtime. Ninety minutes has passed since Lia received the dose. Before eating, she checks her blood and the meter reads 64. Lia and her dad share a perplexed look with one another. With almost one full unit of insulin still on board, what might have happened had they given the full amount?

It may be that Lia is still honeymooning, though her endocrinologist thinks not. It may be the first reading was just wrong, perhaps her finger wasn’t cleaned properly, maybe it was a meter accuracy issue.

Or it could be that treating diabetes isn’t really just a matter of science. It requires more than mathematical logic and the relationship of quantity, patterns and conjecture, but must also take into account the most primitive and genius of the human condition, the element of instinct.

Not to take anything away from science. It is science that made the field trip that Lia and I were on even possible, without it the village would’ve stayed lost forever. But just as emotion and intuition were certainly a part of the people of that great settlement, and possibly even its demise, I wonder where in the complex world of artificial re-creation does the word hunch fit in.

On November 14, World Diabetes Day, Juvenile Diabetes Resource Foundation Advocacy is hosting Type 1 Talk in an effort to bring type 1 communities together from across the country for a lively and engaging discussion on various pertinent topics. To join the talk on Facebook and host or find your own Type 1 Talk event click here.

If you too use intuition for treating diabetes and would like to suggest your own question for the moderator or cast your vote for Without Envy’s suggestion, click here before the end of the day today, October 22, and under topics search: emotion.