Twists & Turns continued...

Remy Campbell



If Shari and Ira are the heart of "Twisted," then artist and photographer Remy Campbell is certainly the soul of the film. With a keen awareness of the world around her, Remy internalizes her experience with dystonia in ways that are both unique and inspiring.

Suffering constant pain from generalized dystonia (her mother was also diagnosed with dystonia at the same time she was), Remy underwent DBS surgery that and gave her back control over her body. She now walks upright and doesn't have constant pain.

In one of the most dramatic scenes in "Twisted," Remy displayed exactly what occurs when her batteries are shut down. It's the one part in the movie that most people remember more than any other sequence of the film.

Her surgery took place seven years ago, and there's not a single day that goes by that she doesn't appreciate what it has done for her. "Not too long ago," she says, "my batteries were dead for a week. I was completely hunched over and for the first time in years I had to pull out my wheelchair. It was truly a humbling experience. When I walk, I feel totally free, and I never, ever take that for granted."

Remy believes the film was a great success in providing a greater awareness of the impact dystonia can have on people. "I definitely think it was good to show a young person like myself go through such a dramatic change on film. I feel that it gives people who have physical limitations hope that there are remedies out there for them. I also think that some people who are thinking of DBS as an option might be scared to go through it. Seeing me in the film might offer the encouragement they need to go through it."

Despite the relative normalcy that the DBS has provided Remy, she still knows that her experience with dystonia is an ongoing life predicament that she struggles with every day. "It's become my identity as a disabled person. Before my surgery, people were able to see my disability. Now, when someone looks at me, they don't see the disability anymore. It's not obvious and it's more of a challenge to explain to others that I might be hurting or feeling some sort of physical pain. It's as if I'm wearing a big band-aid that no one can see. But I know it's there, as if it's another being inside of me.  I certainly don't miss the constant pain, but I do think a lot about how scary it is be changed. It's forced me to re-establish who I am and how I think of myself as a person and as an artist."

Remy has taken on these challenges bravely as she explores ways to help herself while helping others.  She continues to delve into photography - her beautiful self-portraits display graceful and soft skin tones with her piercing eyes beholding the wondrous world around her.

"I feel very connected with people with disabilities, and I want to pursue a career in that field," she says. "I love talking to others about their pain and disabilities, and I feel I can help others in this regard." Already, people gravitate to her page on Facebook for counseling when they recognize her from the film or other appearances she has made.

"I want to get into art therapy where I can help others see themselves in a creative, healing light. I think art can help others. I think this is part of my quest," she says.

Remy plans to travel more now that mobility has allowed her to get around so much easier. She hopes to visit India, China, Europe, and Thailand.

"Having dystonia has altered my path in life, and though I'm still going through the transition, I'm excited about the choices that are open to me and I'm so grateful for what I have."

Back to story

Email this page     Print this page