Miami Herald (MH) - Saturday, May 9, 1998
Ana Veciana-Suarez; Herald Staff Writer

Segal glances at the scribbled message before quickly turning away to prepare tea. "Maybe he will," she whispers. "Is it 1:30 yet?"

Doug Segal died in November 1988, six months after his older brother Scott. Both suffered through AIDS, hemophiliacs who contracted the virus when they received HIV-contaminated clotting factor to treat the illness that had controlled their lives.

This Mother's Day, Segal marks the 10th anniversary of Scott's burial. She would prefer to spend it alone.

She won't. Her sons are dead, but she is still a mother -- now, matriarch to her family. She has five grandchildren, Scott's and Doug's own, and they want her around. She understands the need to celebrate even when her spirit fumbles.

"One of the saddest things is that nobody calls me `Mother,' " she says. "I can't pick up the phone and hear, `Hi, Mom.' That hurts. That really, really hurts."

Her Kendall condo is filled with photographs of Scott and Doug: a black-and-white of them in high school, a color snapshot at a wedding, a smiling portrait of them in swimsuits. All reminders of love nurtured and love lost.

"I would not trade the 36 years, even the bad ones. It's true what they say: It is really better to have loved and lost than not to have loved at all."

Fighting through the pain

Segal, a writer and teacher, knows that it is in the deepest of winter that we discover the redeeming power of summer. No, she can't answer to "Mother." And, no, she can't even answer the questions that sometimes pound at her heart and her head: Why my sons? What was the purpose of so much suffering?

But she has managed to survive, and sometimes that is just as good as it gets. "I know I can't live life in front of the grandchildren being sad all the time if I want them to be happy," she reasons.

Segal is 66, a handsome woman with a winning smile and enough self-imposed guilt to bend the strongest of backs. She talks about regrets, about being a carrier of hemophilia, about the times she did not measure up. She must be reminded that her actions -- her tireless devotion to her family -- speak otherwise.

"She did a wonderful job raising them. They were terrific guys. They were as devoted to her as she was to them," says Ellen, who had Brett, Todd and Margo with Doug.

It took one of her sons' last letters to alleviate the burden: "Mom, I know it's been hard for you. From the time we were small, you gave of yourself to help Scott and me survive. This past year you basically gave up your life to be a part of what was left of mine. Live the rest of your life. It's yours now. I love you."

But after her boys' deaths, she wasn't sure she knew how to live the rest of her life for herself. "I married at 18 and spent the next 36 years mostly in hospitals. What do I do? Where do I go tomorrow? My life is not normal because normal was going to hospitals."

Her life, in fact, has been punctuated by periods of losses and recovery, each a separate grief with devastating cumulative effect: her father's death at a young age, her own divorce, her youth and her sons' childhoods spent in hospitals as the boys suffered through hemorrhages caused by hemophilia.

"I didn't think they would live to go to kindergarten. Then, I didn't think they would live to be bar mitzvahed. Then, in high school, it was worries about fights and cars and how they could just bleed to death."

For a long time, she questioned the struggle of those early years, those countless transfusions and rushed trips to the hospital only to watch them wither away in the plenitude of their manhood. When Doug was still alive, she asked him point blank: "Did I do the right thing in keeping you alive, or should I have let you go easier and earlier without the pain?"

"You did the right thing, Mom," he replied. "That's the reason you did." He pointed to a wall where framed photographs of his family hung as testament to his life -- and to her own.

Sources of comfort

In the decade since that conversation, she has found solace in teaching, as an activist for hemophiliacs and with her grandchildren. It was the catharsis of writing, though, that provided a modicum of joy. A journal she kept has become a 140,000-word manuscript. Editors have told her it's a page-turner, but they fear the book will draw a limited readership.

This doesn't faze her. "If I can survive my sons' death, I can prevail until I publish our stories."

From Segal's writings: A wave is the inner being of the ocean. It is the ocean measuring itself, displaying its vastness, its power for the earth to recognize, to accept . . . I have a wave of loneliness. It washes over me, covering me, tugging at me with its undertow, exerting its influence, testing my capacity for endurance.

I quickly learned to tread water, but the gradual realization that I could sit on dry sand, away from the ocean's edge and escape the dark of the undertow, was a good sign.

Segal wasn't always so sure of her survival -- or her sanity. Healing has been difficult, at best, and always unpredictable. For almost two years after Scott and Doug died, Segal could barely get out of bed. She recalls little of those months. Even now she gropes to remember, pausing between sips of her tea, cup in midair.

"My feeling after they died was, `So I cross the street and get hit by a bus. So what? What could be worse than what I've already been through?' " She sighs, reaches for a tissue from a Kleenex box that is never far from her side.

A son's plea

She considered suicide as a way to escape from the pain. But then she remembered . . .

"Promise me something, Mom," Doug asked her shortly before he died. "Promise me you won't kill yourself."

She hesitated.

"Mom," Doug insisted, "you're the only one who can tell our children about how we were when we were young."

So her refusal to betray her sons' trust gave her courage. It provided her with a mission. She carpools for her grandkids, cooks and bakes with them, helps with school reports. Mostly, though, she tries to hold herself up as the "Keeper of the Daddy Stories."

"She's very nurturing," says Elyse, who had Matthew and Amy with Scott. "She loves to bake. And when they need help with home or a term paper, she's Johnny on the spot."

Segal's grandkids, with the help of their mothers -- none was infected, none has hemophilia -- have not forgotten the essence of their fathers, the magic of their spirit, the triumph and tragedy of their short lives. They have learned lessons that often take adults years to recognize.

Writes Brett, 15: "I have learned to live each day as if it were the last, and I have thrown my heart into my schoolwork, knowing he is watching over me."

Todd, 14, who wrote and acted in a one-act play about AIDS: "I have a brother and sister who love me, and I have my mom who has been mom and dad and that's just as good. I still miss my dad, but overall, I'm doing OK."

Matthew, 14, who turned 4 on the day his father was buried: "I still don't talk about death too much, but . . . it's easier than it used to be."

And Margo, who was only 2 when her father died: "We still keep getting mail that has his name on it. Every time my mom throws away my daddy's mail, I tell her that I want it, and then I take it. I keep the mail safe. Some people just don't know he is dead. I love him very much, and I would do anything to bring him back."

The grandchildren have provided comfort, for sure, but one that is tempered by sorrow.

Segal watches the children with pride and talks about their achievements with a smile. Still: "I can't help but think of all the things my sons are missing. It is terribly bittersweet."

She, too, has learned lessons. About life, love, the resiliency of the human spirit. In the midst of terrible pain, she has never forgotten the strength her sons displayed. A reservoir of courage, she calls it, always there when needed yet unnoticed when you don't.

"Sometimes, you surprise yourself," she says. "I realized I'm a lot stronger than I thought I was. But maybe I knew that all along."

You can read more about Maxine Bender Segal's journey in her own words, as well as essays written by her grandchildren, on HeraldLink, at www.herald.com

AL DIAZ / Herald Staff IN MEMORY: Maxine Segal holds herself up as `Keeper of the Daddy Stories.'

AN EFFORT TO COPE: Amy Segal wrote and illustrated Penelope's Special Flower last year. It's one of the ways Maxine Bender Segal's grandkids have tried to deal with the loss of their fathers.

THANKSGIVING, 1987: The clan, from left: Matthew, Amy, Scott, Elyse, Brett, Todd, Maxine, Ellen, Doug, Margo.

AL DIAZ / Herald Staff MOTHER'S DAY WEEK, 1998: The Segal family today, from left; Matthew, Amy, Elyse, Brett, Todd, Maxine, Ellen and Margo.

CAPTION: color photo: The Segal family today from left Matthew and Amy and Elyse Brett and Todd and Maxine and Ellen and Margo (a), 1987 clan from left Matthew and Amy and Scott and Elyse and Brett and Todd and Maxine and Ellen and Doug and Margo (n); photo: Maxine Segal (a), Amy Segal wrote and illustrated Penelope's Special Flower last year (r)
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