My Type 1 diabetes documentary would open like this:
The scene starts out wide, along a long, winding road through Death Valley, California. The camera pans in on some dots you see in the distance. As you get closer, you see they are cyclists, working hard to pedal 100 miles though the hot desert. Pan in even closer and you see a Dad, a Mom and a teen. Now, settling on them, it’s clear to see both the mom and the child are wearing insulin pumps. The dad, pedaling just behind them with an eye on both, is monitoring two CGM’s on his handlebar: one for mom, one for kid.
Everyone is smiling. Everyone is challenged. And while Type 1 diabetes is in the picture and clearly on their minds, everyone is showing it who actually is boss. Smiles are everywhere.
Or, my Type 1 diabetes documentary would start like this:
Scene: The floor of Congress. A teen girl is preparing to speak before a joint committee session, representing not just all people with diabetes, but all people with chronic diseases. Her hair looks not so perfect, and she’s a little pale. Flash back to two hours earlier. In a DC hotel room, the girl gets sick over and over while her mom, holding her hair back, says “The insulin will bring you down soon. You don’t need to testify if you don’t feel you can.” The girl stands up, washes off her face and looks squarely at her mom. “I have to, Mom. High blood sugar won’t stop me from my commitment.” Back to the floor. The girl finishes her talk and the room erupts in cheers. A row behind her, her parents cheer but wipe a tear. If only people knew. And yet: smiles are everywhere.
Both could have been filmed, because both happened. I share this because a documentary that has shown at Sundance and is featured in the New York Times opinion section shows quite a different scene. And while the wickedly tricky thing about diabetes is that Every. Single. Experience. is unique, the one depicted is so unique that many are bristling at the notion of it representing the life of a person with diabetes, and even the need for funding for a cure.
In the documentary, an obviously passionately caring mom talks about raising her teen daughter with diabetes. Anyone watching it will agree: as you see it in the film, the mom lives in a dark place. All the time. In every way. She describes her child’s diabetes as “volatile,” and yes, diabetes can sure be that way. She shares their schedule (thus the name of the film “Midnight, three and six,” the times at night, every night, she gets up to check her daughter’s blood sugar). Her daily (and nightly) grind is no different from many. What is harshly different – and quite frankly, concerning to me as a mom – is the blanket of true fear and despair that clearly covers every moment of every day of this family’s life. It gives the perception that life with diabetes is depressing and terrifying – for all, all the time. I think even the dog looks sad in that film.
Maybe it was in the editing. Perhaps the filmmaker egged the mom into some of the drama (after all, who pulls out a full month (or more!) of diabetes supplies to do a simple pump site change?) Maybe there are nuances to her diabetes that make her story unique and more challenging than most others. This could very well be. But the film never says that, and instead lets us assume this is the normal life of a person with diabetes. (I don’t think calling diabetes “volatile” is a point of difference or a unique claim. It is for all. Again, this could have been lost in editing, after being well explained by the parent). Maybe the family felt it was their duty to amp up their emotions to 11 for the sake of advocacy. If they did, it would only be because they care. But it doesn’t work.
Because while some parents and patients are sharing it and saying “This is how it is,” many more are bristling at the storyline, questioning the motivations of the film and yes, asking friends and family not to consider it a valid representation of their life with diabetes.
It is important here to note that those bristling against it do not savor life with diabetes. They work hard to battle it. They have days when they want to pound their supplies into a million pieces. They, too, have times when their emotions are amped up to 11. They dedicated hours, days, seasons, even years to advocating and fundraising for better treatments and a cure. They want – and deserve – change.
But they do all that with one top priority: living life well despite diabetes. And while smiling.
Which brings up something I’ve been wondering for a long time: Must we in the diabetes world create, inflate and yes, exploit fear and angst to gain attention? Because I don’t think we need to. Speaking as a parent who has raised a child with diabetes from a very young age to a now independent adult, all with as much positivity as I can and all while raising hundreds and hundreds of thousands of dollars for research (and gaining the friendship and respect of many US Senators and Reps. Anyone can do it if I can!!), I say we need not. In my own personal experience, I’ve been able to motivate friends (and even strangers!) to give generously toward a cure for almost two decades now. When I ask, I share positive advancements, and stories about how my child is thriving despite it all. For us, it works. I’m not saying it is the only way, but I am saying I’ve found it is a way that resonates with people in a way that motivates them to give.
And I also say this: while that documentary is absolutely getting more play than anything else on diabetes in recent time, it’s doing more damage than good.
–Marinating those new to the life of raising a child with diabetes in fear. Imagine being new to all this? The shock of being told your child has a chronic, still incurable disease that will take a lifetime of constant care is still sinking in. Desperate for encouragement and information, you Google. And you get this film. This is what life will be? You think. It’s in the New York Times so it must be the reality, right? I cannot imagine the terror, sadness and pure dread newer parents feel watching this. I want to hug them and say, “It does not have to be the way.”
–Convincing parents and patients who may be doing well that they are not. What’s wrong with me? I’ve already heard parents say that, having seen this film. Do I not care enough about my child? Why am I not as sad and terrorized as that? Why does my medical team not have me as hyper vigilant? I better not trust them. It happens when things fly around social media. Folks with excellent support begin to doubt. Because, you know: the saw it in a movie.
–Moving all people with diabetes backwards into a place of discrimination, assumptions and more with the general public. Parents – and patients – work hard to prove that their diabetes does not stop them. I know people with Type 1 diabetes in almost every line of work. I know pro football players with it, world champion swimmers, mountain climbers, even Ironmen, all who bring their Type 1 diabetes along. You know, it was not so long ago (and it still happens sometimes) that people assumed diabetes meant you could not do all that others can do. And people discriminated. We all work hard to fight that.
Now imagine your son wants to play varsity soccer. The coach knows he has Type 1 (and your son was right in telling him). But the coach saw this film. And deep down … he knows that you must be hiding how delicate and yes, disabled your child is. Supposition plays a part, and your son does not make the team.
Fast forward it to your daughter as a finalist for a big job. She has diabetes, the other finalist does not. Legal or not … the boss has seen this film and it plays a role. I cannot bear the idea that this child’s very unique situation might represent us all.
–Using fear as a factor to fundraise for a better tomorrow. Is fear and despair the only good reason to help find a better tomorrow for people with diabetes? I’m more inspired by those who are taking the hard, grueling and sometimes infuriating life with diabetes and doing something incredible with it. Rocking the middle school play lead. Winning the Super Bowl. Going off on a semester abroad and doing great. Winning a school election. Having a family and raising them well. Or like that family I was riding beside through Death Valley: conquering it all with teamwork and happiness. All of it. With grace. With dignity and yes, without a crippling fear.
Is that not inspiring enough?
The film is not going away. Since it is a Sundance feature, it will get even more buzz. I never thought I’d wish that not to happen when it comes to diabetes awareness, but in this case, I do.
I wish someone had filmed something else. Something true, impactful, brave and clear in a way that represents most, not just one unique situation.
Here’s how my documentary would close:
A giant college campus. Daughter is laughing as mom says goodbye. Under her bed one can see the mom has left enough diabetes supplies for a million years. “Great, Mom,” the girl laughs “If everyone with diabetes on the planet comes to my room and has a low, we can treat them!” Mom laughs and then does the hardest thing ever: says goodbye and leaves to go home. In the room, the student smiles, hops on her bed and looks around. Her own life is ahead of her. Walking toward her car, the mom smiles and shakes her head, looking up at a blue sky. “She’s ready to fly,” mom says out loud to no one but herself. “And so am I.”
That was me. That is my diabetes parenting reality. I just wish everyone could share it.