Millions of Americans have been diagnosed with obsessive-compulsive disorder (OCD). Even so, it’s still widely misunderstood — and even joked about.
In October the International OCD Foundation is hosting an event at McLean Hospital in Belmont to express what it’s really like to live with the disorder. It’s called “A Night to Believe” and it’s part of OCD Awareness Week. The program will feature OCD-inspired art, including music, poetry, storytelling and animation.
Twenty-three-year-old Newton filmmaker Kendra Mattozzi will be there. She has OCD, but she also has a very cool job at Cloud Kids, a Brighton production company that makes animated programs about nutrition for children. During a tour of the office space she showed me a collection of iconic action figures decorating her tidy desk.
Mattozzi has a lot of spreadsheets in her life, “a lot of notes, a lot of schedules, a lot of calendars,” she said, adding (with a cute smile), “and a lot of ‘Ghost Busters’ and ‘Alice in Wonderland.’ ”
“Star Wars” characters, too. Mattozzi’s sense of humor is playful, but she admits the way our culture jokes about OCD can be really frustrating, especially when people casually toss around the acronym.
“It was actually really frustrating how much my OCD got in the way of making this animation about OCD!”
“Whether it’s coworkers or friends, anything, they’re like, ‘I’m just so OCD about this.’ And you know everyone laughs and you go on to the next thought. But to me I take that and go, ‘Are you, though? Do you really know what it feels like?’ ”
She has for her whole life, according to the stories her mother’s told her over the years.
“When I was a toddler she found me in a room and I was organizing all of the shoes in the house in like a line,” Mattozzi recalled, then went on to tell another: “When I was beginning to walk I would lean against the fridge and organize all the magnets in a line.”
At first her parents thought it was cute, but then Mattozzi said they realized, “this is a problem.”
Growing up, Mattozzi learned to manage her compulsive behaviors with support from family, friends and therapy. But she often hid her constant counting, checking and arranging, too. In 2009, though, as a student at the Massachusetts College of Art and Design, Mattozzi revealed some of her compulsions and phobias, including her obsession with germs, in a short animated film. It stars her talking about her OCD, but jarring edits show the viewer how sporadic and stressful the disorder can be.
“Germs, sponges, salmonella commercials,” she says directly to the camera. Then a quick audio cut jumps to her asking, quite emphatically, “Whose idea was it to have a sponge? I’m going to find that man, I’m going to dig him up and punch him!” A little animated scene brings that fantasy to life.
Now, Mattozzi is well aware that joking about OCD in her film might seem kind of hypocritical.
“I didn’t want people to think that OCD is not a problem,” she clarified, “but at the same time I didn’t want to make a heavy piece cause that’s just not my character. I could’ve made a really heavy piece, I could’ve talked about ‘I picture my parents dying if I don’t do these things.’ ”
Dr. Jeff Szymanski, executive director of the International OCD Foundation, sympathizes with Mattozzi.
“I think people with OCD would like others to just get it,” he said at the foundation’s headquarters in downtown Boston. As he sees it, the lack of understanding about this anxiety disorder is striking — among the public, the media and even the medical community.
“What I say to people is if they really want to understand what OCD is you don’t look at the behavior — talk to the person about what their internal experience is,” he said. “Their internal experience is unremitting, debilitating, chronic anxiety and all these behaviors, whether it’s checking or repeating or washing their hands or praying or counting, these are all done to quiet this internal anxiety.”
Communicating that internal anxiety through humor, poetry, music, stories or film, according to Szymanski, is in some ways better than lectures or research papers. That’s why his foundation screened Mattozzi’s film at McLean Hospital for OCD Awareness Week. The “Night To Believe” program will showcase creative ways people choose to express their OCD through art. It will also be streamed live online.
“The creative expression of OCD is really about, ‘Here is the torture that I went through, I want you to know that I went through this, I want you to know if you have this that you’re not alone that you went through this,’ ” Szymanski said.
Now, making art can often be a therapeutic experience. Was it for Mattozzi?
“It was definitely not,” she recalled with a short laugh. “It was really awful.”
The animation process, which is painstaking to begin with, actually exasperated her condition.
“I remember my OCD being so bad, like, ‘Oh you just did that frame, go back and delete it and redraw it,’ ” she said.
And she did, because she said she had to. “Because my mind is telling me to do it, otherwise something bad will happen. So it was actually really frustrating how much my OCD got in the way of making this animation about OCD!”
In the end, though, Mattozzi managed to get through it. Now she’s looking forward to seeing her short film on the big screen. Other OCD sufferers are flying in from all over the country. Some of them will also share their experiences through musical performances, poetry readings and storytelling. Doctors and researchers will be there, too.
Mattozzi hopes her quirky little movie will get some laughs — but at the same time she wouldn’t mind if it causes people to think twice before they crack a joke about their latest “OCD moment.”