I thought if we did everything right, we wouldn’t face the same troubles as everyone else. I’m so thankful I was wrong.
I am standing in line in front of an inflatable bounce house next to a DJ’s screaming speakers at a fundraising event on the SUNY Albany campus. I am a place holder for Saoirse, Ula, and their friend Anna as they run about the field, scoring helium balloons, getting their faces painted, and watching Zumba demonstrations.
This is not where I want to be on the first Sunday in May.
I have new blueberry bushes and grape vines to get into the ground. We need to re-string some woven wire. We have things to paint, things to prune, things to clean, things to rake, things to hoe.
Bob approaches, holding a cup of coffee from Dunkin Donuts, one of the ironic sponsors of this event. We lock eyes amidst a sea of hundreds of children and grownups, trying to recognize ourselves in this place. I see you, I am thinking as I look at him. I know who you are. His warm eyes crinkle in recognition as a wry half smile creeps up his right cheek. I see you, too, he seems to say back. And I know you.
We are both experiencing a severe case of identity whiplash. We are not in our environment. Or so we like to think. And yet, oddly enough, this day has been set up for families just like us.
In spite of our pastured chickens, our grassfed beef, the kids’ scrappy hand-me-downs and our fridge full of bone broth, kimchi and kombucha, attributes that identify us with a very small population of this country, we share one very powerful thing in common with all the people here today. We live with type 1 diabetes in our family.
So does Saoirse and Ula’s friend, Anna. She and Bob were diagnosed within a few weeks of each other. Like us, Anna comes from a farm family. Like us, her parents are concerned about the soil, about GMO foods, about living a life in harmony with family and planet, about being active, outdoors, and, well, ….doing things right.
We all got a big shock back in 2011. Our natural, earth-centered lives were suddenly tethered to finger pricks, blood tests, glucometers and insulin.
I will never forget the moment Bob was diagnosed. I was sitting in a chair in the corner of the doctor’s office, knitting madly to calm my nerves. He was up on the examination table, feigning interest in a battered copy of People magazine. We’d gotten the call the day before, once the lab results were back. We needed to come in. Immediately. And there we were, waiting in awkward silence. Suddenly, the doctor and her assistant burst through the door, hands filled with baskets of syringes, insulin pens, lancets, and all forms of plastic paraphernalia I’d never seen in my holistic, back-to-earth life. Bob did his best to stay calm for the both of us as our doctor got down to business with a very serious diagnosis that explained his horrifying weight loss over the past several months. I tried to stay calm as I watched his body turn into a pin cushion, but I felt blackness close in around my vision. I clung to the wool in my hands, the only comfort I could receive in that moment. Then I did the best thing I could to get a grip on the situation. I cried.
From the doctor’s office we were directed to the pharmacy, where we stood on line to purchase out-of-pocket his first supply of insulin. Nine hundred dollars later, we sat in the car in the parking lot, staring out the window in shocked silence.
This wasn’t supposed to happen to us. We did everything right…..Right?
I don’t know how many times we had that conversation with ourselves. We’d been to all the organic food and farming conferences where lifesyles like ours were held in esteem. We’d read all the books. The way we lived was the antidote to cancer. The antidote to tooth decay. The antidote to climate change. The antidote to chronic illness. The antidote to diabetes.
And in all that antidote-proclaiming, we had fallen victim to a sickening hubris that can attach itself to folks who make the choice to go against the grain. Did someone we know get cancer? It was probably the pesticides on their foods. Or they weren’t eating grassfed meat. Or maybe it was their stressful job. Did someone have diabetes? They were probably eating too much processed food and refined sugars. After all, we thought, we’d found the answer.
But we didn’t find the answer. Instead, we found out that life sometimes gives you a big fat smackdown.
And it can be a tremendous gift.
Because even greater than the weight of the glucometer, the glucagon gun, the insulin pens and the carb counting, is the weight of that self-righteousness. It is a mask we wear, an attempt to hide ourselves from our deepest fears: That we are all vulnerable. And we all fall down. Some of us get to split wood and cross country ski until our skin grows leathery and we meet our death in our sleep. But many of us face the humiliating reality of open-backed hospital gowns, no matter how much firewood we split, no matter how many miles are on our skis, no matter how wholesome our diets.
The self righteousness does nothing to spare us.
But in shedding it, we are liberated from fixating on the latest nutritional advice, the latest claims about whatever simple changes that will enable us to live forever; the latest dogma about whether we should touch our lips to plastic, glass, aluminum or stainless steel. We are stripped down to the most essential questions: Whether we meet the end in our sleep or beside a blipping monitor, can we answer for our lives? Will we walk this earth in such a way that we can rejoice in our every step? These are the questions that supersede all the diets, the products, the lifestyle changes.
I turn my attention back to the bounce house, where Saoirse, Ula and Anna are taking their turn. I snap a few photos, drinking in their thrills as their feet defy gravity. When their turn is up, we move to find our team, a group of extended Schoharie County family and friends who have all given up a morning of padding through soil to take a walk on pavement. Then, we join the crowd on a simple walk, using each pace as a prayer to find a cure for this illness we share in common. And yes, I realize as we move together. I am still rejoicing in each step.
There are less expensive insulin that you can ask your doctor about. Novolin R and N are the old time insulin. Its NOT instant so there is a waiting period after taking them before eating. They are injectable using syringes instead of the insulin pens but I use the same needle all day, 4 uses, by keeping it in the fridge – 20 years with NO problems. My vet told me of positive research done on needles used that way. Medical doctors won’t recommend it, tho.
Sam’s clubs and Walmarts carry a generic version of Novolin called Relion, which is $27 a vial without insurance. Much, much cheaper! They also have a generic monitor with cheaper test strips.
Just wanted to share in case it might help financially.
Debbie
Hi Debbie; Thank you for letting me know. We do have insurance this year, which helps — but this is the kind of thing that it always helps to know about, as you are most certainly aware! Shannon
Thank you for this post. It was such a breath of fresh air. Sometimes I feel like I’m the only one in the world who has gone through that. My son was diagnosed with Type 1, also in 2011, at age 8. We had done everything “right.” We had the kind of Weston A. Price diet that deserves bragging about, and all other aspects of life (pure bedding, limited medications, checking for EMFs) were attended to. So now, like you, we know humility.
Hi, Shannon, yes, we humans sometimes think we’ve got it all under control, but once we get rid of that self-righteousness, then it surely does lift the burden! Unless the change (of health) redirects, I say continue with all the good healthy habits you share with us, for just looking at you and your hubby and daughters, what beauty there is! Now your readers with similar health issues will be additionally encouraged as they read how you deal with it. There was diabetes in both sides of our family, but none of us (seniors now) “kids” got it. One never knows, of course, but doing all the “right” stuff in the first place, will surely help along the journey with the condition, continuing to be good stewards of the gift of life given to us!
Thank you for such an inspirational article. Yep, righteousness lives here, too… doing everything right… I’m looking forward to reading more of your journey with this.
Well said, as usual, Shannon. A year ago I was ripping my husbands junk food diet to shreds… Now a year later I am eating crow!
Shannon, thank you again for sharing something so important to all of us: rejoicing in humility with every step. When I went through breast cancer, it was the same: beating myself up to try to figure out why, when I’d done so much “right”…and the looks from people that belied the unsaid hope that somehow, I’d brought it on myself, because then, they didn’t need to worry….our lives, our world, our environment…it’s all far more complicated than we can ever control. The best we can do is follow our hearts, take care of each other, and remember to stay humble. All the best for good health for all your family, lots of self-forgiveness, and much rejoicing!!!