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By LANE DeGREGORY, Times Staff Writer
Maureen Brainard, dying from a rare, incurable disease called amyloidosis, wanted to go out with a flourish: "I need the people in my life to know they meant something to me. I want to thank them. To say goodbye."
[Times photos: Bob Croslin]
|After her diagnosis, Maureen Brainard started the invitation list for her final party. At Philthy Phil's in St. Pete Beach on a recent Saturday, she's surrounded by people who love her: friend Laney Loscia, left, niece Whitney Halpern, niece Kelly Bajusz and friend Nicola Haddak.
|This is the Maureen everyone knows, at the center of attention, the one who dressed up as Zsa Zsa Gabor, complete with wig, to bring a smile to others.
ST. PETE BEACH - They have never been to a wake like this. No one knows what to say.
On this overcast Saturday, more than 100 people pack the porch at Philthy Phil's restaurant: contractors and secretaries, children and great-grandparents, lawyers in golf shirts, bikers with ZZ Top beards.
They all want to hug the host.
She made them promise not to cry.
She's parked at the head table, holding court, squeezing hands. Her dark eyes are rimmed in kohl liner. Waterproof. Just in case.
She's wearing white: white sandals, slacks and blouse. She knows she looks pale. But when her sister dressed her this morning, Maureen Brainard insisted on white. The opposite of black.
She'll be dressed for a funeral soon enough.-------
She has been planning this party for weeks, ever since she found out for sure.
She ordered shrimp and stuffed mushrooms. Buffalo wings. They used to be her favorite. Mudslides for her girlfriends. Beers for all the regulars.
She invited folks she hasn't seen in years.
They flocked from all over Florida, from Ohio and Virginia.
Some came bearing gifts, though they weren't sure what to give: Hallmark cards and Bible verses, a lucky coin, a child's crayoned sun. The bartender brought a tiny rosebush. An accountant cradled a box of old photos.
"Do you remember this?" the accountant asks, sliding out a faded snapshot. "Halloween, must've been 20 years ago."
Maureen reaches for the picture, turns it around. She sees herself dressed as Minnie Mouse, fake whiskers between felt ears. "That was at my house," she says. A smile spreads across her thin face.
She has always been the host, the life of the party.
"Do you have that one of me in the purple wig?" she asks, looking up from her wheelchair.
"That's the photo I want to run with my obituary."
A year ago, Maureen thought maybe she was getting arthritis.
Her hands were hurting and cramping. She underwent surgery for carpal tunnel syndrome. But her hands wouldn't heal. They curled into claws.
Her feet followed. She started stumbling. By May, she could barely walk. In June, she had to park her Miata in the garage for good. She and her husband, Scott, had planned to go on a cruise for their 25th anniversary in July.
Instead, Maureen checked into the hospital and learned about amyloidosis.
A rare disease, primary amyloidosis strikes about 2,000 people in the United States each year. Abnormal proteins build up in the organs, causing the heart, kidneys and nervous system to malfunction. No one knows what triggers it. There is no cure.
For a few months, Maureen tried chemotherapy, which zapped her hair and strength, but not the bad proteins. By Christmas, she needed an oxygen tank to breathe. In early February, doctors told Maureen her heart was shutting down. She knows she might not make it through March.
"Before I go, I need the people in my life to know they meant something to me," she says. "I want to thank them. To say goodbye."
On the day she was diagnosed, Maureen started making lists: long lists of names in shaky handwriting. The names got shakier as the weeks went by. People who had touched her life, folks she had almost forgotten: That girl Janis she used to share lunch with on the Cincinnati playground in second grade. Sherri Gaye Rose, the first friend she made when she moved to Florida in 1976. Bob Huber, who ran the accounting firm where she was the office manager.
Suzi Fischer, whose husband had gone to Stetson law school with Scott. Friends of her daughter, Shay, who's 33 now. Scott's friends from the Chamber of Commerce. Kids from her granddaughter Haley's kindergarten. And, of course, the gang from the Firehouse. From 1990 to 1999, Maureen ran the dark saloon in downtown St. Petersburg. She can still remember the house band's set list, can still rattle off the regulars' drinks.
In the last month, she tracked down phone numbers for 67 friends. Each afternoon she felt up to it, she called a few. "I'm dying," she would announce in her gravelly voice. "But I don't want you to be upset." Sometimes, she had to wait for the person on the other end to stop sobbing. "You made my life better," she told each one. "I just want to thank you."
Then she invited them to her party.
She didn't realize how hard it would be, being the strongest person at her own wake.
By 4 p.m., the line to hug the host stretches around the head table, winds past the buffet, curls out the door. Forty more guests, at least, have joined the group. A former UPS driver, the man who used to fix the copier at the accounting office, the band from the bar. A real estate agent, a pack of waiters. Elected officials.
"How are you doing?" St. Petersburg Mayor Rick Baker asks, coming over to peck Maureen on her cheek. He studies the crowd. He looks impressed. "This is amazing," he says. "You sure have a lot of people who love you."
All her life, Maureen has been a social magnet. Outgoing and irreverent, energetic and optimistic, she trades jests with the loudmouths and draws out the wallflowers. "Even as a child, everyone was drawn to Maureen," says her mom, Mollie McClellan. "Once you meet her, you can never forget her."
To know her is to understand why she wants to go out this way. She wants to die with as much life as possible.
"She's just so much fun. That's what you notice first about Maureen," says friend Sherri Gaye Rose. "Her first concern, always, is to make everyone else happy."
When folks heard about Maureen's illness, friends called friends; e-mails webbed through cyberspace. Twice as many people showed up as she invited.
"I sure never expected all this," she tells the mayor. She sandwiches his hand between her weak ones. "Thank you for being part of my life."
No one makes speeches. No one asks Maureen to. Laughter and tears flow as freely as the Miller Lite.
Remember Friday happy hours at the old Tyrone Bennigan's? Remember that time Maureen dressed as Zsa Zsa Gabor and wore that purple wig? Remember her cat Jitters? Those Spam omelets she used to make? The way she screeched Happy Birthday?
"You never could sing. But you made so many people feel special," says her niece, Kelly Bajusz. She swallows a sob, crushes a paper napkin against her swollen eyes.
"You promised not to cry," Maureen reminds her, dabbing at her own waterproof mascara.
"So did you," Kelly says.
Just then, the bartender bounds up with his miniature rosebush and plants it on the floor. He leans in and smooches Maureen on the mouth. "Hey, Sweet Pea," Scott Oviatt says, whirling Maureen's wheelchair away from the table. "C'mon. I'm having a Firehouse flashback. Let's go do shots."
Because of her illness, Maureen can't drink. So Scott buys her a virgin pina colada. As he rolls her back across the porch, through the throng of people, a conga line forms behind her chair.
Maureen grins, lifts her frosty glass to the sky. "You see!" she says. "If I only had a funeral, I would have missed all this fun."
That does it. She kills her own party. When she says that word, the conga line falls apart.
She can forget, sometimes. When she and Scott are alone on their deck, sitting under the stars, or cuddled on the living room couch, catching up on his day. Sometimes, when she's not hurting too much, she can believe, just for a moment, that they'll stroll the beach at Pass-a-Grille together again, waiting for another sunset.
"We keep taping shows we miss, Law and Order, CSI, Las Vegas," she says. "Then I look at Scott and laugh. Why are we doing this?"
It's hard to live in the present without talking about the future.
Scott, who is a lawyer, helped Maureen make a will. Every morning, before he heads to the office, he bathes and dresses her. They don't dwell on what-ifs or curse the unfairness of the universe. They're trying to enjoy what's left of now.
Maureen doesn't believe in heaven or hell. She's not sure about God. "I believe in something," she says. "I'm just not sure what." She doesn't see death as the absolute end. How could anyone who knows they're dying accept that?
"I'd like to think, somehow, I could at least still keep an eye on things around here," she says. "I want to watch my granddaughter grow up. I want to know if my daughter will have another one." She presses her palm to her chest. Gulps some air. After a minute, she forces a smile.
"I told Scott, when you're lying between those two 25-year-old showgirls, I'll still be hovering right on top of you."
The charcoal clouds break apart about 6 p.m. Slivers of sunshine slice the porch at Philthy Phil's. Maureen tips her tired face to the warmth, tastes the salty air.
Her guests are crushing around her, rubbing her back, kneading her hands. They're trying to convince her what she knows isn't true.
"You're not going to die. They could still find a cure," a woman in a blue tie-dye shirt wails. "Maybe you were misdiagnosed," someone else offers.
If we don't discuss dying, some people seem to think, maybe no one will leave us. If we hold on to hope, think happy thoughts, pray real hard. . . .
"You've got to come to my wedding this fall," says a dark-haired girl. "My baby's due in six weeks, you'll still be here then, right?" pleads her niece. "We'll come back for your birthday," promises a friend from Ohio.
Everyone's trying to help. They don't understand.
"No, really. I'm dying," Maureen has to say, again and again. It was hard enough having to accept it herself; now she finds herself having to convince her friends. "I could go now. Soon. Any day."
She shakes her head over the irony. These last 10 years, ever since her daughter left home, Maureen tried hard to get healthy. She quit smoking. Joined a gym and lost 20 pounds. All that time she committed, everything she did to prolong her life, now none of that matters.
"It's okay," she says, and she hopes it is. "At least I got this chance to learn about living, and how you shouldn't wait too long to try."
Her niece Whitney weeps behind a digital camera. Her sister Anita collapses on her lap. Maureen pets her sister's hair, mops her eyes. Here she is, the dying woman, consoling everyone else. "What will we do without you?" her niece cries. "You're always the one who takes care of everyone else."
Maureen needs to hear that. Yes, she needs to thank everyone, to find closure. But maybe more than that, she needs to know, somehow, she still is needed. "I'll still send you signs," she says, trying to keep her voice steady. "Look for the purple wig."
As the sun slips into the gulf, Scott starts packing: cards and lucky coins, flowers and a Care Bear, boxes of ancient photos. He loads the car, then comes back for Maureen. She looks exhausted - but happier than he's seen her in weeks. Her last party might just have been her best.
"Thank you! I'm so glad I could be here with you," she calls, waving as Scott pushes her across the parking lot. "Thank you all for coming."
A chorus shouts back, "We love you, Maureen! Thank you! Thank you!"
Nobody says goodbye.[Last modified March 7, 2005, 18:36:17]
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