Today is World Diabetes Day, an international day of awareness for a chronic illness that will affect the lives of one in three children born after the year 2000. My friend Virginia here is one of them. She was diagnosed with type 1 diabetes in October 2008, after weeks of losing weight, going to the bathroom every five minutes, guzzling water from the kitchen tap, arguing with her older sisters, and curling into a fetal position under the dining room table. The night she downed glass after of glass of water and complained, “Why don’t they make cups bigger?” her mom got on the Internet. By the time they got to the hospital, Virginia’s blood sugar was 840–a normal reading is around 100.
That weekend in the E.R., Virginia’s parents, my friends Sarah and Andrew, got a crash course in the new normal—finger pricks, glucose monitors, syringe kits, insulin pumps, and notebooks scribbled with endless calculations to counteract the impact of every carbohydrate their daughter takes in. Since Virginia’s body doesn’t produce enough insulin to break down the glucose she needs to thrive, keeping her healthy (and capable of reciting the complicated family histories of all her favorite Greek gods) requires more than $30,000 a year worth of equipment, medicine, and test strips. When I went to see them in that first 24-hours at the hospital, Sarah met me in the hallway with her arms spread wide like a game show hostess: “Welcome to ‘So You Want To Be Your Child’s Pancreas,’” she laughed, before bursting into tears.
Laughing at things that aren’t really funny has been the superglue of my friendship with Sarah. At our worst—or was it our best?–we had six kids between us, all under the age of four, and spent many long, sleep-deprived afternoons on the sidewalk of the block we shared second-guessing our parenting skills. (Are we supposed to be teaching the babies sign language? Should we be listening to Mozart? Is that pink eye? Again?) We whiled away many hours imagining the light at the end of the tunnel—the hallowed day our youngest children would walk into kindergarten, and we’d have the free time to exercise, eat vegetables, and remember what we used to be before we got steamrolled by babies.
For Sarah, that mirage lasted less than a month. Virginia’s diagnosis came just a few weeks after she’d enrolled in kindergarten at a small school with no on-site nurse and an oversupply of well-meaning parents who told Sarah she could cure her daughter’s disease with regimens of raw foods, prayer, and positive thinking. Coping with people who don’t know a damn thing about diabetes (“Are you sure your daughter should be eating birthday cake?” “Have you thought about taking her off dairy?”), is just one of the unpleasant side effects of living with the disease. I haven’t always made it easier: “At least it’s manageable” may be one of the dumbest things I’ve ever said.
Yes, it’s manageable—but for families of children with type 1, it’s also never out of mind. They have to think about whether a kid’s numbers are up or down, constantly assessing what the laps at gym, the excitement of a slumber party, or the stress of a test can do to upset the balance. They have to teach her how to manage her own care as she matures, crossing their fingers that she won’t drive when she’s feeling blurry, or fall prey to a dangerous dieting method called “diabulimia.” They have to keep up a near seamless dialogue of text messages and care conferences with school nurses, endocrinologists and diabetes educators, and hope that their health plan continues to cover expenses that average three times that of non-diabetics. They have to worry about such long-term risks as blindness, nerve damage, and stroke for type 1 children–higher rates of depression, despair and divorce for their parents.
At night, Sarah sets her iPhone alarm to wake her every few hours to check Virginia’s blood sugar while she sleeps. This fall, when the diabetes online community was awash in blue candles in memory of a boy with type 1 who had a succumbed to a syndrome called “dead in bed,” Sarah put the ringer into a jar of marbles at her bedside, just to make sure there was no chance she’d sleep through it.
Living like this requires tremendous courage, many, many lattes (I haven’t seen Sarah without one in four years), and the ability to laugh at circumstances that would make most of us cry. Last month, Andrew ran in a marathon, raising nearly $8,000 in donations for juvenile diabetes research. Today, Sarah and her three daughters can be found barnstorming their school district, creating a paper chain of more than 4,000 blue ribbons and good wishes the girls and their classmates have put together for diabetes awareness over the last month. (Look at the website she put up in a single day.) Just imagine what this woman could do if she ever got a chance to sleep through the night.
That’s why I hope you’ll join me in wearing blue today, and spending a few minutes thinking about Virginia and the three million other Americans who have to think about type 1 diabetes nearly every minute of every day. Let’s hope a cure can be found in her lifetime so that someday, the people who love her won’t have to think about diabetes ever again.