When my oldest son Tom was about a year old, I accidentally caused him to bump his forehead. We were in the bathroom and I was using one arm to hold him on my hip, rushing, and as I left the room I misjudged the width of the doorway. Tom’s forehead met the wall. It was nothing serious. He cried for a few minutes and it was over, except for the guilt I felt. That guilty-sick-to-my-stomach feeling was overwhelming. The only thing that made sense to me at that moment (and yes, I know this was not my most brilliant moment) was to go bang my own forehead into the wall. That’s exactly what I did, and it hurt. A lot. But somehow, feeling my son’s pain made it a little bit easier. That’s exactly what I was thinking about when I watched the preview of Dan Masucci’s short film DxOne.
Dan Masucci, a filmmaker, is the father of Nick, 14. Nick was diagnosed with type one diabetes three years ago. In DxOne, a beautifully made film, Dan portrays the truths of life with type 1 diabetes. He gives us both the perspective of the parent and of the child with diabetes. And the message that really comes through is that what hurts the child hurts the parent, too. “I would take it from him if I could,” says the character based on Dan.
Unlike my moronic way of feeling my son’s pain, Dan has channeled his pain into art, and into advocacy. If you’re a person dealing with diabetes in some way, you’ll be amazed at the accuracy of Dan’s portrayal. If you don’t know anything about type 1 diabetes, after you see Dan’s film, you’ll have a solid understanding of it. And what everyone will take away from the film is how much Dan loves his son, and that diabetes doesn’t just affect the person who has it. Diabetes makes an impact on the whole family.
I had the wonderful opportunity to talk to Dan about his film and his family. His words are as honest and powerful as his film.
When was Nick diagnosed?
Nick was diagnosed in March of 2009 when he was eleven. It’s still unbelievable to me at times that he has type 1 diabetes.
Did you know anything about diabetes before his diagnosis?
I knew absolutely nothing, other than people with diabetes needed insulin. Have you seen Con Air with Nicholas Cage? One of his convict friends trapped on the prisoner plane was insulin dependent. That was my education level of the disease. Looking back, I can see how wrong they portrayed the experience- about diabetes, not about a maniacal madman taking over a prison airliner. I can only guess about the accuracy of that part (laughing) .
Did you make any changes in your life, your family life, or your career because of diabetes?
The changes in my family life are probably pretty similar to most type 1 families. Suddenly we were introduced to a life of measuring spoons and measuring cups and a food scale; a new level of perpetual anxiety- as if preteens and teens don’t cause enough of that already!; and a noted lack of sleep, nagging about testing, nagging about using alcohol wipes, nagging about not drinking a quick gulp of milk out of the bottle, nagging about bolusing for everything in addition to all of my son’s regular chores. I’ll stop there to be courteous to your readers!
But seriously, the anxiety takes its toll. You can do everything you’re supposed to do to manage the disease and still end up with extremely high or low blood sugar levels and unpredictable results. Not to downplay the highs, but it’s the lows that scare me most. My wife knows someone whose daughter and wife have type 1 and the ambulance has to be called regularly in the middle of the night to care for extremely low levels.
I have been fortunate to be a stay-at-home father, which made the transition into this new life easier. My son’s school was half a mile from our home so in the beginning, I could zip over to give Nick his insulin shot for lunch. When his class camping trip came up, I only had to worry about my wife being able to take time off to care for our youngest son so that I was able to go with Nick. I’m home or at hand whenever he calls from the nurse’s office if he’s experiencing any complications. If I weren’t available like I am, I’d worry even more.
When did you decide to make a film about Nick and living with type 1 diabetes?
I decided to make a film the day Nick was diagnosed. I believed it would be cathartic. However, I was emotionally sidelined for two years and most certainly suffering from depression. As a parent, I had always been able to care for whatever ailed my son, either here at home or after a trip to his pediatrician. This was different, and what hurt most was not only the knowledge I couldn’t make him better, but that he knew I couldn’t.
I believe kids who are diagnosed with type 1 diabetes have to grow up faster than other kids. When young, you believe you’ll live forever, but I know my son has already considered that he could die from diabetes.
In the film the dad talks about wanting to help his son manage his diabetes, but also about also allowing him to do it himself. How did you know when it was time to start letting go?
The first step in letting Nick become more independent in his diabetes care was getting him comfortable with the school nurse administering his shots. About six months into his type 1 life, we went from needles to the Omnipod. That device has almost singularly changed Nick’s level of independence. He took to it very naturally and I can’t say enough great things about the product. My wife and I still test him overnight and get on him to remember his bolus and checking his levels, but Nick is very independent about doing what he needs to do.
After the scene of Travis’ diagnosis, the dad says, “We got so much and so little information at the same time.” Based on my experience, that’s about the truest thing anyone has every said about a diabetes diagnosis. How lost were you in the days and weeks after diagnosis?
We still feel lost sometimes. Nick was diagnosed and we were educated within 24 hours, given a bag of samples, pamphlets, an arm full of prescriptions and sent on our way. That was probably the scariest time in my life.
The thing about type 1 diabetes is there are no consistencies. There are universal experiences all type 1’s go through, but each individual’s experience with the disease is different. There’s no rhyme or reason for the way type 1 affects a person one way, and another person the opposite. One day, blood glucose levels are perfect and though you duplicate the next day in every manner within your control, the levels can change drastically. If the body played fair and was consistent, living with type 1 diabetes would become a whole lot easier.
The character Travis says, “I didn’t even know what my pancreas did until it stopped doing what it was supposed to do.” How much of an expert is Nick now? Is he proud of his knowledge and his ability to care for himself?
I asked him this question and he says he doesn’t really think about it. I suppose that’s good. Nick was diagnosed at an early enough age that it’s become a part of his everyday routine. Wake up? Test. Eat food? Test and bolus. Go to bed? Test. Thankfully, he’s very aware of his body. If Nick says he’s low, we know to trust him.
There’s a scene where the dad criticizes Travis for not bolusing for chocolate milk and letting his blood sugar go up to 385. Do you ever feel guilty for being critical – even though it’s your job?
Absolutely. I also feel bad when we sit down to eat as a family. Everyone can take what portion they’d like without measuring except for Nick. Everyone can dig in right away but Nick first calculates his carbs and delivers his insulin. If I don’t see him test, I ask him and that annoys him. I don’t like that, but sometimes he forgets to test. I suspect that at times, he just doesn’t want to.
My pancreas doesn’t need an attendant. I can eat what I like, when I want it, without concern that my body is doing what it’s supposed to. Knowing that Nick needs insulin to live is a hard truth to cope with.
How much of the film is fictional?
Only the names, but I believe many type 1 families will feel like DxONE tells their story, too.
Do you believe there will be a cure for type 1 diabetes anytime soon?
Like Fox Mulder’s poster read in “The X-Files”; I want to believe. I do, however, believe there are good things that already help people live better with type 1, with more coming soon. I certainly hope for a cure in my lifetime.
What’s your message to other parents of children with diabetes?
DxONE is my message to type 1 parents and type 1 people. It says, “I understand.”
One of the frustrating things about the disease is people who don’t understand it. I had a family member tell me, just days after Nick’s diagnosis, “At least it isn’t fatal.” That was very upsetting. I don’t fault that person. They were like I used to be, unaware of how dangerous type 1 diabetes is.
People who aren’t familiar with type 1, think of Wilford Brimley and type 2 diabetes, but it is completely different. I hope DxONE will help people get a glimpse at what life with type 1 diabetes is like.
Visit the DxONE Facebook page.
To learn more about the film check out the DxONE website.