The Diafamily
Chronic illness is a language, and most of us think we are its last living speaker. But on the planet Internet, you hear yourself in harmony.
People do not believe me when I tell them that Instagram is a canyon of empathy, where lone wolves hear whoops that sound like home. People assume it is a wasteland of influencers, crop-toppers and iridescent birds who never land.
When you have spent years on the rope bridge of assumptions, you don’t count out the canyons. Every Type 1 diabetic learns to expect mistranslation. You may know someone twenty years and still hear, “so you used to be really heavy, I guess?” Or “should you be eating that?” Or “I know a diabetic who can eat everything.” Or “I know a diabetic who climbed Mt. Everest.” Or “I know a diabetic who lost his toes and then his life.”
You lack the language to answer, working from a keyboard with its own alphabet. You have mapped this mountain since childhood or been kicked off the map when “juvenile” diabetes torched your forest at forty. You will not die if you eat a Devil Dog, but your blood sugar may set fire to all the foxes’ tails. Or it may not.
Your diabetes may be docile or despotic, an inconvenience or a daily Inquisition that keeps changing the answer key. You may run with the dogs or bleat for green pastures. You are estimated to make 180 more daily “medical decisions” than the domestic animals in the cote of the healthy. You think about food constantly, your lover and landlord. The red velvet in your veins is subject to 42 known factors, of which King Carbohydrate is just one.
You learn to bubble-wrap your pain.
You feel a tinny kinship with Type 2 diabetics, foreign correspondents with similar suitcases. As a little girl I collected pictures of B.B. King and Jerry Garcia, sugar brothers with enough family resemblance to comfort me.
You don’t expect reunions, but you can’t control your emotions when they erupt unbidden. I met my first fellow Type 1 in middle school, a locally famous dirt biker with an infusion set like mine on the hairiest belly I had ever seen. He seemed stronger than me, but he told me he went through a sleeve of glucose tablets every day. We gave each other thumbs-ups and high-fives over other heads in the hallways.
High school brought the girl with the long braid, “thank Gods” dripping like honey from her origin story. She seemed more placid than me, but I talked to Jesus every night, too. We hugged every time we saw each other, and once cried over a cafeteria knish.
I was twenty-eight before I met my “diabestie,” an impossible accident orchestrated by cats. As the fundraiser for an animal sanctuary, I fielded offers of in-kind donations. Someone’s kidney-challenged calico had switched prescription diets; someone’s diabetic tabby had passed away.
But Meredith’s endocrinologist, not her veterinarian, had switched up her insulins. “I went from Novolog to Humalog. Do cats use the former?”
I’d like to believe that Meredith would have become my sister even if we both still had beta cells. She is a nonprofit worker, too, a Jesus freak who blows her own cover every time she’s grateful. Meredith is such a light in my dark that we have sailed far beyond our islets of Langerhans. But there’s no question that our bond was born of bloody computer mice–“I can’t wait for my finger to clot either!”–and costumed exhaustion–“I accomplish more with a blood sugar of 450 than my boss does with a mild headache…and she will never, ever know that.”
Then there was the “diabud” who tripped the light fantastic with my double helix. I was thirty-five when my cousin was diagnosed, the second earthquake in our family tree. We took insulin pump selfies at Thanksgiving. She wore dog tags reminding her to “be strong and courageous.”
But my pack members were so scattered they heightened the sense of strangeness. From time to time I would wave my paws at formal support groups, but their despair sent me sprinting for the den. They were all retinopathy, all the time, livid at husbands and insurance companies and parents and deities. Humor, even black as licorice, was treachery.
Chronic illness is a language, but it is not without folk songs. People do not believe me when I say that Instagram carries the tune.
It started with “invisible disease” accounts. Women with Lyme disease or lupus declared, “my disease is chronic, but my bod is iconic” I was besotted with these brave ones, wry and prophetic. But the #spoonie hashtag broke clouds over the canyon, and soon I saw them, thousands strong.
The Type 1 diabetics were everywhere. They were hilarious. They were livid.
They were grateful. They were alive.
There was Type WON Trista, the British fireflower who wrote New Yorkerly poems about pump tubing and declared me one of her Top Five Fierce Females. There was Every_Diabetic_Is_A_Socialist, the astringent agitator for a world of free insulin.
There was Gerry the Dia-Godfather, who had bayed at the moon for six decades. He loved diabetes tattoos and posted videos of cauliflower experiments. He systematically checked in on each of us: “how is my Angie? You encourage the whole diafamily so sweetly, but how are YOU today?” There was DiabeticMogul, a Gambian middle schooler with the peace of a thousand bodhisattvas.
The pack grows nightly. There are diababes and diawarriors and at least one woolly man who is “Strong Like TROLLabetes!” There are defiant cupcake women glowering over Fudgy the Whale cakes on their diagnosis anniversaries, and almond flour evangelists who avoid carbohydrates like treason. There are tired fathers and Nigerian activists and purveyors of honesty. They are angry and exotic, carsick and commanding, boastful and faithless and humble and holy.
They rejoice in their “robot parts” or share tips on hiding your insulin pump inside your bra. They have yipping broods or reign childless. They adore their endocrinologists or fight the system. They post unconscionable receipts for $1,800 insulin and fundraise for sub-Saharan diabetics on Valentine’s Day.
They are grateful for Nick Jonas using his platform on “our” behalf. They detest Nick Jonas for using his platform on his own behalf. They know the secrets to a 5.8 A1c. They excoriate anyone who touts a 5.8 A1c. They adopt diabetic cats, ride the bus with Bernie Sanders, and rise to the incomprehensible day. They make memes and meaning. They are obese or spaghettish, circled by support or shrieking from bare peaks.
They are so different, the untrained ear would never recognize them all as Type 1 diabetics.
But I tell you, these hundred howls sound like home.
It’s hard to say why we gather on Instagram, why photos of our ferrets or our vegetable gardens make it easier to bare pricked bellies and confused refrigerators. Much of the time, we talk about anything but diabetes: crushes on Jimmy Fallon or nostalgia for Cool Runnings, Christmas socks and Cherry Zero.
But every night, I know they all come back to the canyon. We curl with long tails warming our noses, one last fingerstick before we dream. In every latitude, on every continent–Type One Uncle did research in Antarctica, it’s true – they are genuflecting to glucose but not bowed down.
I hear the harmony, and I stand tall. Far beyond the rim of my body, I count on kindness in canyons. I teach language classes to the chronically well. It is well with my soul.
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About the Author
Angela Townsend is Development Director at Tabby’s Place, where she bears witness to mercy for all beings. Her work appears or is forthcoming in Cagibi, Hawaii Pacific Review, Invisible City, The Razor, and The Spotlong Review, among others. She graduated from Princeton Seminary and Vassar College. Angie has lived with Type 1 diabetes and related autoimmune conditions for 33 years, laughs with her mother every morning, and loves life affectionately.