I have started referring to last week as the “week of worst-case scenarios,” with different reminders every day that type 1 diabetes can be deadly—a fact that I for the most part relentlessly push to the back of my mind. It started when I watched a controversial video documentary on The New York Times’s web site, Midnight Three & Six, about a family pummeled by life with their fifteen-year-old daughter Grace’s volatile type 1 diabetes. One parent or another gets up to check Grace every three hours at night, to make sure she doesn’t die in her sleep. “Every three hours keeps her safe,” says Grace’s mother. “Checking her every 5 or 6 hours can be very dangerous, and by very dangerous I mean she could die. That’s the best we can do, checking her, correcting her, checking her correcting her…. It becomes very life threatening very fast… Do I fear sleep? Yeah, if I’m on duty, I do.”
The video is controversial because of its constant, relentless mentions of death by both mother and daughter—at least 4 times in the 12 minute video—the sense it gives that Grace’s and her mother’s life are 100% about managing this disease, not about actually living and enjoying life (after reading the family’s comments on The New York Times, it’s clear that there is more to Grace’s life than diabetes—but the filmmaker chose only to focus on the disease and its dark side). Many viewers also questioned why Grace isn’t using a CGM to warn her of oncoming lows, and a pump connected to the CGM which would automatically shut off if necessary. (She does, however, have a diabetes alert dog.)
Next came a couple of terrible stories I learned about on Facebook (a reason not to be part of certain online diabetes groups, where reporting bad news about diabetes is the norm). One was about an 18 year old aspiring photojournalist who died suddenly of T1D complications. Another was about a 5 year old girl whose doctor inexplicably prescribed antibiotics when her parents brought her in for what they thought was a tummy bug, and missed the chance to diagnose her type 1 diabetes. Shortly thereafter the girl experienced seizures that caused brain damage.
Finally, when I was bringing Bisi and a couple of friends to gymnastics class at the end of the week, I said to Bisi something like, “I’m going to check your blood sugar because you’re high.” One of the girls asked: “Did you say that Bisi’s going to die?!?”
“No! I said she’s high.”
“Yeah, you’re not going to die, Bisi,” the other girl giggled.
But in fact, at gymnastics that day Bisi went lower than she ever has at the gym before, lower than she should ever be. Her teacher commented that she just didn’t seem like herself. No, she wasn’t going to die. But it was a stark reminder of how quickly a high can become a low, of how this disease requires constant vigilance, and of the pressure not to make a mistake in judgment, as I did that day, when I thought that the carbs in Bisi’s system would be enough to keep her near her sports blood-glucose target of 150.
All this brings up complicated emotions. The fear is there, in the background, but weeks like this one bring it to the forefront of my mind. I have to remember what a relative of mine, an ER doctor, told me: “Katie, human beings have very high thresholds. It’s really, really hard to cause someone to die from this.” I take his point, but whereas most parents have an abstract fear that something could happen to their child, we have a script for exactly how we could lose her.
But we don’t live our lives the way that Grace’s family seems to, with the intense fear of diabetes and its ultimate complication shadowing our every thought and deed. On some nights one of us does get up to check Bisi at midnight, three, and six—mostly to correct high blood sugar when she’s eaten a high carb meal. But many nights we don’t have to (though Bisi has not yet hit adolescence, which may make managing her diabetes much more complicated). We check her before we go to sleep, and then rely on the CGM to wake us up if she goes too low or too high. Essentially, Bisi lives her life like a normal kid, and people treat her that way too. She spends nights at friends’ houses, she goes skiing and takes lessons without us, she walks home from school sometimes just with a friend, and goes to long play rehearsals without us (although the CGM helps make all of this possible). She’s happy and healthy, and diabetes is just a part of life. She even told me the other day that sometimes she forgets she has diabetes. Someday, through one advance or another, I hope she’ll be able to forget it for longer than a moment, and that the fear that every parent of a person with type 1 diabetes carries with them, in some part of their brain, will be allowed to float away.