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Note: A dinner and fund-raiser for Marilyn Maneely will be held April 23. For information and tickets, call 856-616-8774.
Partners facing mortality's limits
By Monica Yant Kinney, philly.com from the Web, April 9, 2005
Haddonfield, NJ April 7,-- Inside their home in Haddonfield, Diane Marini and Marilyn Maneely are living out the marriage vows they've never been allowed to utter.
You know, the part when the couple repeats the refrain: To have and to hold from this day forward, for better, for worse, for richer, for poorer?
There's Diane, 52, rushing to lift Marilyn from her recliner when she starts coughing on a glass of water, ever mindful that ALS patients can drown when water gets in the lungs.
There's Marilyn, 55, wondering how they will pay for an $8,000 adjustable bed -- let alone the electricity bill -- now that neither of them can work.
In sickness and in health...
There's Marilyn, slowly steering her walker while Diane looks on, thrilled that her proud partner is still able to make the trek to the toilet on her own.
To love and to cherish, as long as we both shall live.
That part stings, ever since Marilyn learned she has ALS, the neurodegenerative death sentence better known as Lou Gehrig's disease.
This is how Diane describes Marilyn's fate to their five adult children.
"It's kind of like a tree that every day you give a little whack.
"Sooner or later, that tree is going to fall to the ground."
Partners for life
It was hardly cause for celebration.
They set the date and the time via cell phone, in between appointments and errands.
They told no one -- not the kids, not even the lawyers.
The one romantic touch in the otherwise heartbreakingly bittersweet display of bureaucracy known as Domestic Partnership?
Diane brought flowers.
"We wanted to get married," Marilyn says, struggling to make the words come out the way her brain still hears them.
They so wanted to wed, they joined six same-sex couples in suing New Jersey for the right to marry.
Last year, with the case stalled in the courts, Gov. Jim McGreevey, who later revealed that he's gay, signed the Domestic Partnership Act.
With the swipe of a pen, he gave same-sex couples hospital-visitation and decision-making rights and an inheritance-tax exemption.
While many heralded the law as progressive, those fighting for same-sex marriage viewed "DP-ing" as a demeaning baby step not to be taken.
"It's not an equal right," Diane fumes. "We're still being treated like second-class citizens."
The couple held firm until Marilyn started tripping over her big toe and slurring her speech.
With Marilyn's life on the line, they embraced any title they could get.
Because they are legal domestic partners, at least no one can kick Diane out of Marilyn's hospital room or stop her from carrying out Marilyn's last wishes.
Making every minute count
They met at a spiritual retreat, walking on hot coals.
The mind-body experience came in handy years later, when Diane found out she had breast cancer.
"I thought, 'I walked on fire. I can get through this.' "
Now Diane urges Marilyn to summon the same strength to keep breathing and swallowing.
"Those are the two things that will kill her: no air and no water."
Diane, who owns a construction company, stopped working in November to care for Marilyn full time.
It's a huge financial sacrifice and a bit of a role reversal, since Marilyn had devoted her life to nursing.
The finality of ALS reminds them of the death sentence AIDS used to be.
"Go home, get comfortable," doctors told AIDS patients in the 1980s.
"Go home, get comfortable," the doctors told Marilyn.
Now comfortable means nightly feasts with friends and lunchtime picnics in the McDonald's drive-through.
It's a dip in the pool, an RV road trip to see their daughter's dance show.
It's the computer gadget that talks for the patient who has been silenced.
Typical Marilyn, she picked a sultry voice -- think Brenda Vaccaro -- to utter her every question, joke, concern and command.
"I can't walk, and I can't talk," she says, "but I can still laugh."
Contact Monica Yant Kinney at 856-779-3914 or myant@phillynews.com.
Note: A dinner and fund-raiser for Marilyn Maneely will be held April 23.
For information and tickets, call 856-616-8774.
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