Ride For Life

Thursday, August 03, 2006
BY NICOLE CASTELLI
© 2006 The Times of Trenton

It started out as a slight shaking of the legs. Nothing to take note of really, just an inconvenience.

Slowly, though, it got worse and more noticeable. Doctors could not place it, and after a year of searching for cures, Edison-born Patrick O'Brien finally got the diagnosis. It was amyotrophic lateral sclerosis, more popularly known as Lou Gehrig's disease. At 30, O'Brien was given two to five years to live.

Now, a year after the diagnosis, the filmmaker from New Jersey is taking his story to the streets. Yesterday, O'Brien began a five-day, cross-state journey in his motorized wheelchair, starting in Washington Crossing State Park in Pennsylvania and ending Sunday in Asbury Park.

He and his crew often will travel back roads talking to local people about ALS to raise awareness for the disease, which, as O'Brien explains on his foundation's Web site (www.patrickobrienfoundation.org), is a degenerative nerve disease.

"As motor neurons are destroyed, a person with ALS loses his or her ability to walk, speak, swallow and breathe," O'Brien writes. It is incurable and, in about 65 percent of cases, fatal within five years.

O'Brien is still vivacious and funny, but videos on the Web site show how his body has betrayed him.

"In the morning I am helped out of bed," O'Brien said. "I am fed breakfast. ... Around dusk I go for a ride through the woods."

O'Brien also fills his days with work. He is busy coordinating the film he is working on, a documentary about his life with ALS that will span two years and include this week's ride.

Because of the toll the disease has taken on his body, he does most of his work, as he did this interview, via e-mail. Though he lives in Silver Spring, Md., with his sister and her family, O'Brien said New Jersey was a natural choice for his ride, because the state is what originally inspired his filmmaking.

"Even though I was born in New Jersey, I had spent most of the first half of my life away from the Garden State," he explained. So when he returned to New Jersey in 1991, "I rediscovered the state. ... Suddenly there were all these crazy characters, all these amazing old buildings, the slang, the rust, smokestacks, girls with giant hairdos. All of this and more totally impressed me and possessed me as a new artist."

He started photographing and filming all the things that moved him. O'Brien went on to study directing at the School of Visual Arts in New York, and has made several award-winning films, but his favorite was "Super Model Meat Sports," a short video of two bikini-clad models dancing with various meat products, which the FUSE network has broadcast nationally.

Now, it is the simple things that ALS has helped him focus on. "What this illness has taught me is ... how beautiful the world is after all, how much good people have in them, to not focus on things I cannot change, to appreciate what I do have ... to live in the now, not the past or the future, and not to waste energy on things which aren't important."

On days when he feels like it's all too much, when he hasn't gotten enough sleep, "what works to calm down is to look out the back door, appreciate nature, live in the present."

His sister, Maraesa Guevara-Beck, also helps bring him back. She "is the hero. She washes me, feeds me, shaves me, dresses me, puts up with my moods (and) handles day-to-day foundation logistics."

O'Brien started the foundation as a way to reach others and raise awareness for ALS, which is responsible for more deaths each year than Huntington's disease or multiple sclerosis.

"The idea of helping others now and in the future in my same situation really appealed to me," he explained. "The film we are making will in no way be like any film ever made about having an illness like ALS," he said proudly.

"I believe once the film is finished it will be a fresh look at a world many people have never seen. ... Once the film is done, my goals in life are to be at peace, to see things clearly ... and where possible continue fighting for a cure."