What MY Diabetes Documentary Would Look Like

January 29, 2015By 24 Comments

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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.

 

Such as:

–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.

Filed in: Advocacycurediabetes diagnosisdiabetes helpfeaturedFundraisingGeneral HealthInspirationJDRFJDRF RIde to CureKids CanNew York Timespositive diabetes Tags:

Comments (24)

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  1. Christina says:

    Perfect, Moira. Simply perfect!

  2. sean says:

    unaware of this film but this is a great message. Way to go Moira!

  3. Emily says:

    Darn it, you made me cry. Thank you for speaking for so many of us. Beautifully written.

    • Clara says:

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    • http://www./ says:

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    • http://www./ says:

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  4. Beth McCrary says:

    Thanks for bringing clarity to the differing viewpoints on this documentary. I’ve not made it a secret that I am not a fan of it. I don’t ever want to be critical of how anyone chooses to treat and management their diabetes, but I definitely feel the portrayal in this film does not characterize most people living with Type 1 Diabetes. Especially not the people I know. For me, the best way to raise awareness and funds is to share the reasons why my daughter is surviving and thriving despite diabetes. I make no secrets about the challenges and fears of T1D, but I choose to focus on and share the positives!

  5. Kerin L. says:

    As usual, Moira, wonderfully said. My DD, is 21, dx.d 11 years ago. An Art Therapy Major, who is starting to look at Grad schools. We live in NW Mo, she is now considering a school near Seattle. My first thought was, “Okay, that seems far away!” My next thought, “I have always wanted to go to Seattle. When can I come visit?!”
    She is ready to go! This is her life and she lives it….everyday. And I couldn’t be prouder!

  6. This. Quite simply – this. This is what people need to read. This article deserves to be circulated a million times over, because you have put it so perfectly into words what I myself so wanted to after watching the video this afternoon, on the back of a Mail Online article.

    My greatest issue is that people will see this as the ‘norm’. That newly diagnosed T1s will watch it and feel their diagnosis is terminal, rather than chronic. Using words such as “endure” injections… no, they are our medicine. They keep us alive when, 100 years ago, we would be dead before the month is out.

    Yes, we need to keep campaigning for greater awareness, greater funding, searching for that cure, but until then we need to find a way to LIVE with this condition as positively as we can!

    Thank-you, truly thank-you for writing this x

  7. Kendra Hubbell says:

    A friend sent me the link to the documentary. I first read all the reactive comments and decided I wouldn’t and didn’t need to watch it. Later I did. It left me feeling vulnerable, sad, and angry. What I realized in that moment was that this particular display of T1D represents the scary view of T1D that I’ve battled with since my daughter’s diagnosis, that lives deep down inside of me as a T1D Parent. That’s a way of looking at T1D that isn’t false, but I don’t want anyone else to see it that way, especially my daughter. I want her to see the documentary of the family riding their bikes with their pump and CGM and the girl picking herself up after getting sick and speaking in front of Congress anyway. I tell her how much I love changing her set because it’s fun now, I don’t tell her that I love it because it’s saving her life and how it made me sad at first. I want her to live the full and unstoppable life that I know she can.

  8. Nancy Korman Tidwell says:

    I have not seen the documentary, but it sounds truly upsetting; especially that it will color people’s opinions on whether to hire a person with T1D. We can keep talking about how it really is and our kids can keep talking to their friends — the positives and the negatives – and the advances. When the NYTimes writes an article that’s misleading we have to correct them. I have a good mind to do it right now. Thanks for your post, I had no idea .

  9. Jamie Perez says:

    That really was so perfectly worded! I don’t know how you do it, but you do it so well. Thank you!

  10. Vic Kinnunen says:

    A part of my diabetic journey was captured several years ago – sadly I think parents of diabetic children don’t see enough of the “positive” videos and instead focus on the things the Sundance film portrays – feel free to share
    https://www.youtube.com/watch?v=pbefn3YK2pc

  11. Kate says:

    Thanks for this. My toddler daughter was diagnose in Oct 2014 and I saw this and was very… confused and scared. It made me think I was not scared enough of this diagnosis and yes that my educators were really treating us with kid gloves still. I’m glad to be stumbling onto articles that a lot of Type 1 families were a little dismayed by this video.

    Thanks for sharing!

  12. Dave says:

    One of my goals for my daughter when she was diagnosed was for her to not see T1D as something she cannot deal with on her own. From the moment she came home from the hospital in November 2011, she has been in charge of her own care. At 14 she was old enough to check her blood glucose, to calculate carb counts, to give herself injection, to eventually do her own pump inset changes… Of course at first everything was done under our watchful eye, and with us asking her questions to make sure she considered what she needs to do. Now 3 and half years later she pretty much takes care of all of it without our oversight. All my wife and I do is order supplies. Next year when my daughter goes to college we will be confident that she can take care of herself. And even more important, she is confident that she can do it without us hanging over her shoulder. I could talk about this kid for hours, how she took on Type 1 and Celiac in the same year, how these 2 disorders did not change who she is, or keep her from doing what she wants. I want people to see her as the accomplished student, athlete, musician and individual that she is. This sort of film may be one families experience, I certainly hope its not how my girl is judged as she moves on.

  13. Jen says:

    Moira,
    my daughter was newly diagnosed (8/19/14) when I saw the film. I was paralyzed with fear. No, fear isn’t a strong enough word. It honestly did some serious damage. I spent two weeks recovering. I had to remind myself that the nurses and doctors weren’t lying to us in the hospital when they said that my daughter could live a full, productive life. Other T1 moms weren’t just protecting me when they said “it will get better”. She’s 8 months post-diagnosis now. I still seem to get overly anxious and fearly every couple of weeks. I honestly hope it gets better…
    My daughter is doing alright, not so sure I am.

  14. Jen says:

    “fearful”, not fearly. :p

  15. Austin says:

    Can you please tell us the name of the sundance documentary you have been referring to?

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