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Filmmaker takes on new role to spotlight his struggles with ALS
by Jason Tomassini | Staff Writer
Wednesday, Nov. 12, 2008

Laurie DeWitt/The Gazette
In a room inside his sister's Wheaton home, Patrick O'Brien works on his film, "Everything Will Be OK," a documentary the chronicles his struggles with Amyotrophic Lateral Sclerosis, or ALS, an incurable neurodegenerative disease often referred to as Lou Gehrig's disease, which attacks the muscles and is typically seen among seniors.

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In the advanced stages of a debilitating disease that has left him motionless, Patrick O'Brien struggles to complete his film, knowing that he may die before it is done.

He begins working on the documentary around noon and only stops when he no longer has the energy to continue. His passion takes over now that his body has failed him.

"If he didn't have the movie, he probably wouldn't have lived this long," said his sister, Maraesa Beck O'Brien.

Diagnosed with Amyotrophic Lateral Sclerosis, an incurable neurodegenerative disease often referred to as Lou Gehrig's disease, O'Brien is determined to share his story in a documentary tentatively titled "Everything Will Be OK." He hopes the film will shed light on the disease and serve as a legacy to those he loves.

But for now, the physical challenges of finishing the movie and the costs of keeping him alive make the release of the film an uncertainty. He will need help to make his dream come true.

The production room

Inside a tiny room in his sister's Wheaton home, O'Brien lies motionless in a hospital bed with wires running in and out of machines that carry nutrients into his body.

He has a view overlooking a backyard filled with rope swings, soccer nets and basketballs and bulletin boards full of instructions to keep him focused. His sister's four children can be heard running throughout the house.

Nearly 50 notes are pinned on one bulletin board with numbers designating different commands. One says, "Turn on the Nebulizer," referring to a device that administers medicinal vapor into his lungs. Another simply reads, "Hair is falling into face." On a second bulletin board, more notes with phrases such as "Hotel Room" or "Apartment Floor" direct O'Brien through a storyboard for his film, which he works on in that tiny room.

Next to his bed is his Apple laptop, which contains footage from the film and editing software. The computer, custom-designed for his illness, has a feature that allows him to control the mouse with a headband that responds to the muscle movement on his forehead.

The film is in post-production, roughly six months from being completed, and chronicles his bout with ALS, from his diagnosis in May 2005 – when he was told he had between two and five years to live – through the gradual destruction of his body, to the present.

His challenges captured on film are reflected in his daily routine. O'Brien can speak only in low utterances and it can take him minutes to complete a sentence. While he is not on a ventilator like many ALS patients, a respiratory device helps him breathe correctly.

On weekday mornings, workers from Community Hospice Care visit O'Brien and provide therapy. To ensure he can work on his film into the night, O'Brien ingests a cup of coffee through a tube that leads to his stomach.

It takes at least two people using a metal apparatus to lift his 6-foot, 3-inch, 250-pound frame from his bed to a handicap-accessible shower. Ramps lead from the front of the house to the deck and a large generator powers his medical apparatus.

Before his illness, O'Brien was a successful freelance visual artist in New York City and worked on projects for television networks such as MTV and USA, technology companies such as Microsoft and Samsung and even the Republican National Committee.

But because he worked freelance, O'Brien doesn't have health insurance. He pays for his medical care with past income, scarce private donations through the Patrick O'Brien Foundation, which he established in 2006, and money that his family can provide.

Soon O'Brien will have to go on a ventilator because he won't be strong enough to breathe on his own. That will only boost his health care costs.

"The hardest thing is watching your child die," said his father Kennedy O'Brien.

‘Diagnosis'

In late 2004, O'Brien noticed a shaking in his legs while living in New York. It affected his walking, but he didn't think much of it.

"It would come to the end of the night [on the town] and he would ask if he was walking funny," said Jonathan Thoma, a friend and colleague of O'Brien from New York City. "I'd say, ‘A little bit, but you aren't too drunk.'"

Eventually, O'Brien saw his sister Wendy Gruder Beck, a physician, who told him to go to Johns Hopkins University Hospital for further examination. She then told their mother, Bonnie Beck O'Brien, to expect the worst.

"Wendy said privately she knew it would be a tragedy," Bonnie Beck O'Brien said.

O'Brien was diagnosed with ALS in May 2005. A scene from the film called "Diagnosis" shows footage of the family looking on apprehensively as O'Brien undergoes a series of tests.

From then on, O'Brien videotaped everything, from moving out of his New York City apartment, to his caretakers struggling to move him into a shower. Another scene begins with still shots of family photographs taken before his diagnosis and transitions to footage of O'Brien in his New York City apartment with a respirator on his nose, distressed and struggling to speak.

"Vid-, video … videotape yourself," O'Brien says slowly with a look of severe pain on his face. His sister, who filmed the scene, then turns the camera on herself as she weeps, just before paramedics arrive.

The documentary is interspersed with raw footage filmed on a camcorder and stunning footage shot on an 18-millimeter camera by the film's director of photography Ian Dudley. The scenes are edited by O'Brien and usually set to music rather than narration.

In one particularly moving scene shot just after O'Brien lost most of his ability to walk, the camera captures O'Brien's twitching hand as he takes nine different colored pills. It then follows his struggle to move around his apartment, as he uses his arms to pull on various items and drags himself along the floor.

But not all the footage shows the harrowing side of the disease. In another scene, O'Brien rides a motorized wheelchair through a Wendy's drive-through to get an order of french fries. He then wheels away smiling, ready to enjoy his meal.

"It's a celebration of who he is, what he is," said Kennedy O'Brien. "… It's not meant to be negative or a downer."

‘Love Impossible'

In late 2006, a woman named Laura left a message on the Patrick O'Brien Foundation Web site, www.pobf.org.

"Hi Patrick … Wendy never told me she had such a cool younger brother!" it reads. "… If you ever need any help getting stuff done or just want to get out let me know … I am always looking for someone to go to the movies with!"

The message was from Laura Silverthorn, a friend of O'Brien's sisters and a graduate of Our Lady of Good Counsel High School, formerly located in Wheaton. At the time, the illness was not as severe and after meeting in January 2007, the two began dating.

On Nov. 13, 2007, Laura gave birth to O'Brien's son, Sean Patrick O'Brien, a child who has now become the focus of O'Brien's life. While the family lived together in Silverthorn's Philadelphia apartment shortly after the birth, O'Brien moved to Wheaton, partly because he felt he was a burden, Silverthorn said.

The two see each other often, but online video chatting is the most frequent form of communication.

"Most of the time I'm fine, but there are days I think, ‘Oh my God, he could die. He could not be here. What am I going to do?'" said Silverthorn, a part-time nurse who also has her own temporary tattoo business called Mother Ink.

In one scene, titled "Love Impossible," Silverthorn decorates O'Brien with heart stickers for Valentine's Day as he sits in his wheelchair. After footage of her washing and dressing O'Brien, and preparing his handicap-accessible van, the two are seen enjoying a vivid, snow-covered Brookside Gardens.

Silverthorn says the film has helped occupy the time O'Brien has left. But with the birth of their son, who may not ever remember his father, the film has taken added significance, Silverthorn said.

"He doesn't have any money to leave his son, he doesn't have anything," she said. "He wants to leave this for him as a documentation of something he did that's he's proud of. If he dies and this movie is not made, I'm going to feel guilty about not helping him get the one thing he really wanted."

Final credits

Financial issues for both O'Brien's medical care and his film make the release of "Everything Will Be OK" an uncertainty. An elaborate title sequence including animation still needs to be completed but preliminary talks with a production company are underway.

The hope is to finish the film by summer of 2009 and possibly submit it to the renowned Sundance Film Festival in Utah.

As for the disease, O'Brien will be taken off hospice care if he is forced to go on a ventilator and medical costs will increase. Donations can be made at www.pobf.org, which go directly toward the film and ALS research.

"Sometimes I wish individuals with the means would take a hard look at all the work I have done for these three years and see the enormous possibility that a unique story like this has to put a face on this ‘old person's disease,'" O'Brien said in an e-mail, using his forehead muscles to manipulate his computer.

"Maybe it's my fate to pass and never know my son or whether this film was a hit, but I pray someone who sees this helps me stay alive long enough for those things."

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