Annette John-Hall | Joy and pain of one couple, all on cameraBy Annette John-Hall
Inquirer Columnist


Pilar Prassas, whose work "In Sickness and In Health" will be shown again at 7 p.m. Monday at the Philadelphia Arts Bank.
» More images Their story was much publicized. Diane Marini and Marilyn Maneely, life partners for 14 years, one of seven same-sex couples suing in 2002 for the right to marry in the state of New Jersey.
'Til death did them part.

Watching In Sickness and In Health, the riveting documentary by Pilar Prassas, hailed as a favorite at this week's Philadelphia International Gay and Lesbian Film Festival, it was obvious that only the big screen could do parts of their story justice.

Prassas' cameras chronicle the couple as they trek back and forth to Trenton advocating for civil rights. But they also zoom in on Maneely dancing a birthday jig wearing a white halter dress (a gift from Marini so Maneely could channel her inner Marilyn Monroe), and follow Marini and Maneely as they go through the ordinariness of parenting Maneely's five children.

Their story was just like that of any American family facing the joy and stress of running a household and raising kids.

But 21/2 years into filming, the plotline turned tragic. Around Thanksgiving of 2004, Maneely, a registered nurse, received a fatal diagnosis of amyotrophic lateral sclerosis. Better known as Lou Gehrig's disease, ALS is a neurological disorder that rapidly robs the victim of all muscular function.

And just like that, Marini and Maneely went from anticipating the day they could finally marry to planning for Maneely's inevitable funeral.

Ten months later, Maneely died. She was 55.

Caring for a terminally ill loved one hit home for many of us.

Toward the end of his life, my father-in-law was burdened with a portable oxygen tank and plagued by coughing fits. He was slowly dying of emphysema, and, being the matter-of-fact man he was, he planned for his exit.

"I'm getting my house in order," he told me.

He got his will finalized, planned his funeral, said his prayers.

Maneely and Marini did what they had to do to get their house in order, too. Reluctantly, this couple who had fought so hard for marriage registered as domestic partners, mostly as a safety net after Maneely's diagnosis was acknowledged.

In the end, Marini still wasn't allowed to sign off on Maneely's wish for her body to be donated for ALS research.

Not the typical American family after all.

While New Jersey recognized civil unions this year, same-sex couples still don't have automatic access to each other's benefits. And forget about money controlled by the feds.

"I'm a widow, but I don't have any benefits of being a widow," Marini told me a few days ago. "I have no pension, no Social Security, nothing."

For Prassas, 28, the film was a labor of love and pain. For years, she lived next door to Maneely's family in Haddonfield until Maneely divorced and moved across town with her kids to live with Marini. She's also best friends with Maneely's oldest daughter, Theresa.

"I don't think they would have let any other camera roll like that," says Prassas, who was asked by Maneely to speak at her memorial service.


Epilogue
Almost as much as raising awareness of gay rights, or lack of, Marini is just grateful that Prassas' first feature-length film is a celebration of her partner's life rather than a march toward her death. An "ode to Marilyn," as Prassas likes to call it.

"Marilyn's essence was caught on film," Marini, 54, says. "You can see the joie de vivre she had for life. . . . She had an infectious laugh. It was loud. I used to tell her, 'mod-u-late.' "

Still living in Haddonfield, Marini often finds herself gripped by loneliness and the bittersweet realization that the person she battled for the right to marry is no longer at her side.

"Everything's the same," she says, "but everything's different."

A construction company owner who stopped working to care for her partner, Marini is getting her house in order - literally. She's renovating so she can move on, as much as that is possible.

She only hopes that in today's slumping market, she can sell her house at a fair price.

But that's the thing about real life. It's not always fair.


http://www.philly.com/inquirer/colum...l/8619217.html
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Contact Annette John-Hall at 215-854-4986 or ajohnhall@phillynews.com. To read her recent work: http://go.philly.com/annette.
An encore screening of In Sickness and In Health will be presented at the Philadelphia Arts Bank, 601 S. Broad St., at 7 p.m. Monday