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.

The Story That Keeps On Giving

It has been a busy past couple of months for us with teaching, writing and a little travel to New England for the Thanksgiving holiday. But I took some time over the summer to recap for a local magazine just what our first year with diabetes was like and I’d like to share it with you here. For many of you, this will be nothing new, both in terms of what you read as well as what you and your special little loved ones have endured. To be certain, it’s a story I love to share and with nearly another year having passed since Lia was diagnosed, the fear, the hope, and the love with which we greet every day has not changed. We’re still learning to live without envy.

Words Without Envy

The way the year ended was pretty much the way that it started with a trip to the children’s wing of the hospital. Only this time our purpose there was not to admit Lia for what would become a very long and arduous twelve months discovering and treating diabetes, but to visit the children who now, like herself one year ago, were suffering through the holidays confined to a hospital room.

For some time we’d been scratching our heads as to how we could mark the anniversary date of her diagnosis and our thinking at first to be honest — or mine anyway at least — mostly veered in the tempting and frankly much warranted direction of we-can-do-anything in making amends for last year’s depressing celebration. Diabetes could not and would not keep us down. We all having weathered it together deserved something big, something memorable. But like many things in life often the best place to mark such a passage is not carried away with intentional bliss but closing the loop in the very same place where it started. So we shelved all ideas of a personal family statement and made plans to visit the hospital bearing notebooks and pens for the children.

In Walden Thoreau writes of his wood-pile and how during the coldness of winter and the howling windy nights he endeavored to keep a bright fire in his house and also in his breast. Writing too sustained him, as it has me too over these past many mind-numbing, inescapable months. This story-journal has been my wood-pile, my writing the axe, and just as Thoreau could look out through a window and admire his work by the volume of splintered wood chips, I look back over the words that I’ve written and the words of the friends fireside and I find admiration as well. There has been sorrow, yes, and worry and much frustration, but the moments of pleasure and pure wonderment of the grace and the courage of Lia, my family, and everyone touched by disease resonates warmly and endlessly throughout my heart.

There is much to be thankful for. For John and Krista, who have suffered from the lack of attention or too much of the wrong kind of attention and in who I love and would trust wholeheartedly would something tragic ever happen. For my parents and siblings, who have appeared here only occasionally but have shaped my beliefs and actions more perhaps than anyone. For our friends, there are no better companions. You know who are, we love you. For those strangers we’ve met on the way who promised us open arms, not once did you disappoint. Thank you for your attention, your comments and your compassion.

And, of course, there is Lia. There is nothing I could write that would adequately express my love, my pain, and my hope for her. I have tried to be honest in writing about all that has happened this year, the ups and downs, the many new things we’ve learned about each other and ourselves. The truth that’s been steady throughout is this one conflicting opinion: There is no better nor no worse person in the world this could have happened to. She has truly been like an angel.

Especially, I’m thankful for Franca. This year has been trying for both of us, in ways only parents could understand. For most of the day and night we’ve had to shift our focus on where it was needed and that has been costly in terms of being a couple. It would be a lie to say there have not been moments I did not wish to return to the lustful, love or be-damned carefree days of our past. But she more than anyone else has shown me that living without envy is not only possible, but the only way to live life. They say that marriage isn’t a word it’s a sentence. We are, this journey and she have taught me, the better story.

Like everything, there is much that changes in a year. We grow, we discover, we make our own history. We learn what we are made of, and also who we are not. Every day is an opportunity.

As we left the children’s hospital and walked across the street bridge to the parking deck, Lia was feeling especially happy. For her, our visit wasn’t about marking this date of one year with diabetes. It wasn’t even about her. It was about giving back. As she skipped along in the cool sunlight, squeezing my hand, she spoke up and said, “That was nice. Can we do this again next year?”

Little princess, you betcha.

A Lattice Work Community

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

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

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

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

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

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

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

Outreach

Our first month living with diabetes ended with our daughter, Lia, and Franca and I retreating for a weekend to a posh golf resort in the central part of our state. We were there to attend a statewide family outreach event sponsored by the Juvenile Diabetes Research Foundation and we had intended to take Krista too but that did not work out and so it was just the three of us. I say retreat because in the thirty days we had spent acquainting ourselves with this maddening disease it felt as if we were at war. All of us, Krista too. Maybe even especially Krista. We were fighting against food, against the choices of what food there is to feed us, and we were fighting against the essence of food itself, its composition and structure. We were fighting against insulin, a necessary component of life I had not given one single iota of thought to since high school biology class thirty years ago, which had been either compromised and killed or re-engineered into an uncompromising double agent, both friend and foe that acted in Lia’s best interests in one instance and turned quickly against her in the next. And we were fighting against depression, against anger, and acceptance. Against change.

I once read that if you are unhappy with something and you want it to change, you should first try and change yourself. This is the advice I would give my children whenever they approached me with a problem. I would ask: If you don’t like the way things are going, how could you change yourself to make it better. This usually elicited a roll of the eyes or a heavy sigh, not because they didn’t believe it, though they probably didn’t, but because the very idea of change is hard. It scares us and it has allies of its own, things with names like self-preservation, pride, hubris, that work both for and against us.

A day or so after we came home from the hospital, I was standing in the living room talking with Krista, who was laying on the couch. She’d been coughing and combating a sinus infection since before we’d brought Lia home. I asked her how she was feeling and she said to me, Dad?

I said, Yes honey?

What if I have diabetes?

I looked at her. You don’t have diabetes, sweetheart.

But what if I do?

I went over and sat down on the sofa beside her. She looked at me. It’s been a rough couple of days, hasn’t it? I asked.

She nodded.

I think what you have is just a sinus infection, I said.

She looked away. My answer had not satisfied her question and I knew even as I said it that it would not. Krista is twelve and on the verge of her own daunting life-changes. It is an exciting time for her and I feel sorry and helpless for her worry, and for the attention that’s been diverted from her for these past few weeks. Visiting her sister in the hospital, she had seen and heard enough to be wary. She knew how there were no warning signs. How a virus can sometimes trigger the onset. How diabetes was probably programmed in Lia long before she came down with a cold. How could it not possibly be the same for her? For any of us?

At the JDRF retreat we attended over the weekend, both Franca and I participated in TrialNet, an international network of researchers working to prevent, delay and reverse the progression of Type 1 Diabetes. As relatives of someone with type 1, we stand a greater chance of developing the disease and so we both felt that being part of the trial, which involves screening your blood for particular antibodies, was more beneficial than not. Three days later, both Krista and her brother John participated.

Without a cure though it’s just knowledge. But knowledge can turn to action and action to reassurance, which is what I desperately long to give her and Lia, and anyone else facing this horrid disease.

So I leave her on the couch with a hug and her thoughts and this: If it turns out you do get diabetes, I said, we’ll treat it with as much love and care as we’re treating it now.

She nods okay, but I know it’s not good enough. Not for her, not for me, not for anyone else. But at the moment it’s all I’ve got.

To donate and become part of the hopeful community searching for a cure to diabetes, please see here.