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.


Hope

I mentioned hope. In the days following Lia’s diagnosis, one of the first things we noticed in our efforts to understand diabetes was the plethora of information out there. Looking back through my internet search history for one day last week out of 289 different web pages I had visited for the day, eleven had nothing to do with diabetes. These were local or national news sites, social media or one of my kids surfing the web for a movie to watch. The other 278 were in some way connected to furthering my understanding of the ins and outs of this challenging disease.

Toward that goal, I’ve purchased or borrowed or checked out of my local library no less than a dozen books dealing with diabetes. I’ve watched web logs and spoken with family and friends of families and friends who’ve been touched by diabetes. Talked with nurses and doctors and pharmacists. Attended classes with educators. Read brochures and booklets and periodicals. Watched videos of children discussing their diabetes. And since bringing Lia home from the hospital, I’ve been part of an on the job training program like none other I’ve ever experienced.

Needless to say, I’ve learned a lot.

For instance, I learned that insulin must be stored in a refrigerator, not in the car in the hospital parking deck where it may sit for twenty-four hours. I’ve learned the importance of checking your pharmacy order for errors before you leave the store and not days later where you’re likely to discover they gave you the wrong test strip.

I’ve learned that if you make homemade pizza every Saturday night in order to enter figure the carb content of a typical serving, you need to know the weight of that pizza in ounces or 100 gram increments, not in terms of she eats two slices.

Also I’ve learned in relation to foods that vegetables and legumes are good for people with diabetes unless, of course, you’re talking about potatoes, corn or lime beans, which are technically fruits and have a high carbohydrate content.

I’ve learned that it matters where you inject and when you inject and whether you pinch the skin or not. That three a.m. blood sugar readings can keep you up the rest of the night no matter the number.

I’ve learned that Type 1 Diabetes makes up only about 10% of the seventeen million Americans diagnosed with the disease, the rest have Type 2, and that insurance does not consider either one life-threatening despite the fact that diabetes is the fifth leading killer of Americans and that a hundred years ago before the discovery of insulin, and thousands of years before that, the lifespan of a child post diagnosis of type 1 diabetes was measured in days, not years.

But I digress. I intended to speak about hope, not impediment. But the two as I’m learning are in fact intertwined. Obstacles spur hope, hope, in turn, illuminates the obstacles. To be sure they are what drive researchers all over the world in their focus on the prevention, cure and treatment of diabetes and its complications. Studies into self-regulating insulin, the artificial pancreas project, continuous glucose monitoring systems, which was cited in 2008 as one of the Top 10 medical breakthroughs by ABC News.

The list goes on: regeneration of insulin producing cells, cell replacement therapies, immune systems response studies, metabolic triggers, gastrin combination therapy, the growing global burden diabetes presents to the international community.

For someone so new to diabetes and still struggling with the sheer weight of the diagnosis, it is reassuring to learn there’s a wonderful community out there overcoming the obstacles one by one, learning in much the same way as we’re doing ourselves, through study and trials and errors, and an endless supply of hope.

Click here to learn more about the research being done for Type 1 Diabetes. To become a part of this community and donate toward finding a cure, please see here.