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After Tragedies, Some People Rise Up to Find Their Calling


THE Phoenix factor" is what Dr. Janice Stefanacci calls it -- the quality that allows some people to rise above grief and anger in the aftermath of a personal tragedy.

"Their lives are torn to ashes, but they find something inside of them that gives them the strength to contribute and make a difference," said Dr. Stefanacci, a clinical psychologist with a private practice in Manhasset.

"They turned meaninglessness into meaning," she said, "so that the tragedy of their lives wasn't in vain. Many of the best fighters were just living normal lives when lightning struck."

The individuals profiled here are among many on Long Island who have used personal adversity as a springboard to make a significant contribution to Long Island.

For the Disabled

Mitchel Shapiro, 46, legally blind and severely hearing impaired, travels throughout Long Island speaking at schools and civic organizations about the Foundation Fighting Blindness and about overcoming obstacles.

For Mr. Shapiro, a personal struggle began more than 25 years ago, when he was told he had Usher syndrome, confirming what he already knew: that he was losing both his hearing and his sight. The symptoms had started at 8 years old, when he was told he needed to wear a hearing aid. When his vision also began to fail, a retinal specialist diagnosed the retinal degenerative disease that brings with it a loss of hearing.

The year 1994 was a very rough one for Mr. Shapiro, as he remembered. "Following my divorce a year before, our family business was sold, my girlfriend broke up with me, my vision and hearing continued to get progressively worse, and I was severely depressed," he said. "I felt like I had reached rock bottom.

"Then I came to an awakening. It started with a poster with the message: 'Your greatest weakness is your greatest strength.' That poster nagged at me for two and a half days until I finally got it -- my greatest weaknesses, my vision and my hearing, are my greatest strengths. I could either give in and feel sorry for myself, or take control of my life."

Through his father, Mr. Shapiro learned of the Foundation for Fighting Blindness, a national eye research organization dedicated to finding a cure for retinal degenerative disease. He decided to attend a meeting of the Long Island chapter. At the end of the meeting, when one of the leaders asked if anyone could do public speaking, Mr. Shapiro volunteered.

Realizing that he first needed personal tools to function more effectively, Mr. Shapiro learned Braille, sign language and received mobility training. He then began his new role as public speaker and advocate.

"My message is that if you're affected by a disability, you have choices as to what you're going to do about it," he said. "If you sit back with self-pity, you get nowhere in life. Or you can choose to do something to make a difference. Those who have the courage and persistence are life's winners."

Mr. Shapiro has become a frequent speaker for the foundation, as well as for the United States Organization for Disabled Athletes. He is also a vice president of the Long Island affiliate of the national Foundation for Fighting Blindness.

In 1996, as he became more involved with the foundation, Mr. Shapiro decided to plan his own fund-raiser for the organization. After recruiting 12 wine distributors, he organized the first Blind Wine Tasting Gala, which raised more than $40,000 for the foundation. The wine tasting has since become an annual event every fall, which this year drew 550 participants.

"It is my way of increasing the awareness of the public about blindness and living with a disability," said Mr. Shapiro, "and of raising money for the foundation. My mission is to show people that despite the obstacles, one must continue to keep fighting, to find the right tools to enhance the quality of their lives, and to do something to make a difference."

Against Drunk Driving

Celia and Marvin Strow, the parents of four daughters, never thought of themselves as activists. But 18 years ago, shortly after their daughter Janice's 22d birthday, she was killed by a drunken driver. The driver, a local businessman, was sentenced to one year in jail, but because the Nassau County jails were overcrowded, he was placed in a work-release program, returning to jail only on weekends.

"We were furious," said Marvin Strow, Janice's father. "The sheriff considered this a non-violent crime and released the man who killed our daughter."

When Mr. Strow began tracking other drunken driving cases, he realized that even when there were fatalities, many drunken drivers were getting little or no jail time, he said.

"While we were grieving for our daughter, we were so angry that these deaths weren't treated as if they were important," said Celia Strow, Janice's mother. "When we heard that Mothers Against Drunk Driving had just been created in California, we were driven to direct our anger and grief into something positive and decided to start a MADD chapter on Long Island."

Taking the names from a scrapbook that the Strows had compiled of other victims, they sent out letters to announce their intentions. Weeks later, 25 people showed up at the basement of the Holiday Inn in Plainview, for the first meeting of MADD Long Island. Mr. and Mrs. Strow then set up headquarters in the basement of their Hicksville home and opened a bank account with $5.

"Our first goal was to change public perception," said Mrs. Strow. "We knew we had to educate people about the dangers of drinking and driving, and to teach them to recognize drunk driving as a violent crime."

The word quickly spread about MADD Long Island. Four nights a week, the Strows traveled to schools, churches, synagogues and civic organizations throughout Long Island, to tell Janice's story and deliver their message to children, adults and teen-agers about driving while intoxicated. They also started a victims' support group for families.

"At first, you think you'll never laugh again, never have a good day or do normal things," said Mrs. Strow. "But life goes on, and it's helpful for victims to cry together, to share their grief and their anger."

During the following years, MADD became an advocate for stronger public policy and tougher law enforcement.

"We were proud to be instrumental in the passage of the zero tolerance law in 1996 for drivers under the age of 21," said Mr. Strow, "and we continue to push for New York State legislation to reduce the legal limit of Blood Alcohol Content."

Since 1982 when Madd Long Island received its charter as one of the nation's first chapters, the organization has grown to 3,000 members. There are now 600 chapters throughout the United States. In Nassau and Suffolk counties, the number of alcohol related deaths dropped from 184 in 1982 to 75 last year.

"Over the last few years, we've seen a significant attitude change," said Mrs. Strow. "For us personally, the organization helped us get through our grief and gave us a place in which to channel our anger."

Aiding Head Injured

The motivation for Jill and Stuart Gleiber to become activists was strictly selfish, they said. They were worried only about their son Gary.

"But in our selfishness," said Mrs. Gleiber, "we have taken hundreds of other children with us on our path."

In 1982, ten days after his Bar Mitzvah, Gary Gleiber was waiting for his school bus when he was hit by a car. The 13-year-old All-Star Little League player, tennis champion and popular member of his seventh-grade class was in a coma for five months, in intensive care and on life support for 101 days, said Mrs. Gleiber.

"We were told by the doctors 36 hours after the accident that he probably would not live," said Mr. Gleiber. "Thanks to advances in medical technology, Gary survived, but when we were finally ready to leave Huntington Hospital and we asked our neurologist where we should go with Gary, he looked at us sadly and said, 'I don't know.' At that time, no one with such severe head injuries had survived."

The Gleibers found out firsthand that there were no available services on Long Island for survivors of head injury, or for their families.

"We kept asking ourselves," said Mr. Gleiber, "what are we going to do with Gary for the rest of his life?"

For the next two years, Gary lived upstate in a residential rehabilitation center, while Mr. and Mrs. Gleiber commuted back and forth daily 64 miles each way from Valhalla to their Greenlawn home where they lived with their two other sons, 15 and 9.

When Mrs. Gleiber heard that North Shore University Hospital had started a support group for families of head injury survivors, she joined the group. There she met fellow parents who shared her worries and anger that on Long Island there was no head injury rehabilitation center, no housing for survivors, no support services and no available information. Agreeing that there was a desperate need for these services, in 1983 six couples formed the Long Island Head Injury Association.

Our goal, said Mrs. Gleiber, was to educate the public about head injury and to serve as a referral organization for other families. When the group decided that they needed a president, Stuart Gleiber volunteered, and has served as president ever since.

The association formed support groups for head injury survivors and for their families. Soon after, they started a recreation program to provide an opportunity for survivors to socialize, and for families to have a respite.

The next critical issue they faced was housing, she said, adding, "We realized that Gary would always need someone to take care of him and we had to make provisions for his long term care."

The catch-22 was that in order to meet the state requirement for a group home, residents had to be in a day treatment program, out of the house for six hours a day, five days a week.

"The problems was that we didn't have a day treatment program," said Mrs. Gleiber.

Undaunted by another of the many road blocks, members of the Association investigated several model programs and in 1993, opened the Clubhouse in Commack. Today, the Clubhouse serves about 125 people a day in its day program. The goal, said Mrs. Gleiber, is to help survivors to become independently employed.

For the higher functioning individuals, a transitional employment program helps them develop the necessary skills to be able to enter the workplace. Those unable to be employed can volunteer their time at nearby nursing homes and thrift shops.

With a day treatment program finally in place, the Association opened its first group home in 1996. There are now five group homes, each with six residents and a round the clock staff.

Over the last 15 years, there has been great progress on Long Island in treatment and care for survivors of head injury, said Mrs. Gleiber. There are about 3,800 cases of head injuries on the Island every year, she said.

For Gary, now 29, living in a group home in Fort Salonga has given him a great sense of independence, said Mrs. Gleiber.

"He is doing things I never thought he could possibly do," she said, "like working the cash register, and last winter, he even went skiing!"

In the AIDS Trenches

Louis Wiese and Lisa Landi are best friends. Each could never imagine life without the other, they said. But ironically, they never would have met if they were healthy. Lisa and Louis both have AIDS.

They first met on a panel, while speaking to a group of students, teachers and parents. Both are in their early thirties. Neither is homosexual. Neither was ever an IV drug user. Both contracted the HIV virus from heterosexual sex. Both had their dreams shattered, they said, of a future that included a family, a house with a white picket fence and a minivan filled with children.

Both once close to death, neither would give up. They fought to survive and vowed to deliver their message to the next generation: that no one is invincible and AIDS can happen to anyone.

Mr. Wiese was diagnosed HIV positive at 19 years old, after several years of sexual promiscuity, he said. For the last 14 years, he has been living on a medical roller coaster. Shortly after learning that he had AIDS, Mr. Wiese met a neighbor and friend with AIDS who was active in the Peer AIDS Education Program at North Shore University Hospital.

"She explained to me how I could have an impact," he said, "and I decided to get involved."

Mr. Wiese has shared his personal story in hundreds of schools throughout Long Island, hoping to teach others about living with AIDS and how not to get it, he said.

"When AIDS education was first introduced in schools, kids got the information and could pass a written test," he said. "but the reality was that they weren't changing their behaviors. The challenge for me was how to become creative to get the message out and make a difference."

Several years ago, Mr. Wiese met Miss Landi. She was found HIV positive in 1991, after collapsing with PCP pneumonia and being told that she had no immune system left.

"In 1987, I was 21 years old and met the second love of my life," said Miss Landi. "He had been an IV drug user, but I never thought I was at risk. I was climbing the corporate ladder and had a great life ahead of me. I was a nice girl, and nice girls didn't get AIDS."

From the day Mr. Wiese and Miss Landi first met, their friendship continued to grow.

"Lisa's will to live every day to its fullest and to appreciate the litle things that you would normally pass right by have been my inspiration," said Mr. Wiese.

"When I met Louis, he taught me how to share my life," said Miss Landi. "His friendship and love gave me my spirit."

Together and separately, Mr. Wiese and Miss Landi have spoken to more than a half million people about AIDS and have educated more than 700 peer AIDS educators in order for them to take the message back to their classmates. This year they received the 1998 "Extraordinary Voices for Education Award" from Mothers' Voices, an organization dedicated to fighting AIDS.

"It was no coincidence that we met," said Mr. Wiese, "and that we were able to transform our own stories to empower the next generation."

The media has created a false sense of security, he said, adding, "The advances in drugs have prolonged many lives, but the same drugs that have saved us are so toxic that they may kill us. The reality is, there is no cure for AIDS."

"The kids bring hope to us," said Miss Landi. "They give us a purpose, to keep on going. We tell them: 'Louis and I need a cure; you don't. Your cure is knowledge.' Our mission is to bring reality to the kids and help change their behaviors. We want to give them the knowledge that we didn't have."

"If somebody had done that for us," said Mr. Wiese, "we wouldn't be in the situation we're in now."

Breast Cancer Advocate

Geri Barish would have never traded away her life as a suburban housewife, she said. She had married Alan Barish, the love of her life, had two healthy sons and was known in the community as "Mrs. B."

But on the day that her son, Michael, just shy of his 13th birthday, came home complaining of a lump on the side of his neck, Mrs. Barish's entire world crashed.

Following a diagnosis of Hodgkin's disease, with months of hospitalization for Michael, Mrs. Barish quickly learned the meaning of the word advocate.

"Some people might have called it a hysterical mother," she said. "but from having been a very quiet person, I became the mother who read books, asked questions, demanded to know why my son's medications weren't on time, why there wasn't a place for parents to stay. I would have done anything I could to keep Michael alive. I had to be the one to fight for my child."

Over the next 12 years, Mrs Barish continued to fight for her son, who died at age 25 on Aug. 22, 1986. Just three weeks before his death, life threw Mrs. Barish another curve ball, she said, when she was told she had breast cancer.

Following the diagnosis and a recurrence that necessitated a mastectomy, she became involved with the American Cancer Society, as a volunteer for Reach to Recovery, a one-on-one support group for cancer patients. In recognition of her efforts, Mrs. Barish was invited to be a guest speaker at a Survivors' Day Breakfast. But on the morning of the breakfast, her husband, Alan, suffered a massive stroke. Once again, after being told that there was a one year waiting list for a rehabilitation center, Mrs. Barish was forced into the role of advocate.

"That was unacceptable," she said. "If I didn't fight to get Al into rehab, no one else would. When he was finally admitted to Rusk Institute, we received a letter that our insurance policy had been canceled. I didn't know where to turn. So I went to Washington and told the cab driver to take me to the offices of the senators and congressmen, and I told my story to every aide. Finally, I made my way to Senator Al D'Amato's office, where once again, hysterically, I told our story. And within 72 hours, I got a letter that my husband's insurance had been reinstated for two years."

Mrs. Barish took over the family business and continued her volunteer work for Reach to Recovery. Driven to meet breast cancer survivors her own age, she went to a support group at Adelphi University, where, she said, she met a group of women who changed her life. Soon afterward, when invited to a meeting to find out about a Long Island breast cancer study that had recently been released, Mrs. Barish became part of the foundation of 1 in 9.

"Marie Quinn, the group's leader, was furious," Mrs. Barish said. "She told us about the study that had concluded that if you were in the high risk category, lived on Long Island, ate and did the wrong things, then you would develop breast cancer. She demanded that another study be done, and sent letters to every local support group, inviting them to join a political action group. The national statistics for breast cancer in 1990 were 1 in 9, so that's how we got our name. And that was the beginning of 1 in 9."

The goal, she said, is to raise the consciousness level through education and legislation until there is a cure for breast cancer. The Long Island-based group was the nation's first grass roots organization to fight breast cancer, said Mrs. Barish.

"We have learned from AIDS groups how to come out of the closet," she said, "how to fight for our rights with dignity and how to start at the top in Albany. We have rights, and those rights have to be heard."

There are now more than 3,000 active members of 1 in 9, with a mailing list of 11,000.

"Over the years, we've lost many members to cancer," said Mrs. Barish, "including Marie Quinn, who died the year 1 in 9 was formed."

In 1992 Mrs. Barish became co-president, and took over as the group's sole president two years later. This year, when Nassau County bought a historic landmark, the Hewlett House, from the Hewlett school district, the county turned it over to 1 in 9 to develop a comprehensive learning and resource center for breast cancer concerns. Mrs. Barish serves as executive director of Hewlett House, which is scheduled to open in March.

Since the creation of 1 in 9, there has been a growing awareness about breast cancer, with important steps like free mammograms, an end to drive through mastectomies and a second breast cancer study that was recently completed, she said.

"My role, first as an advocate, now as an activist, has given me a goal in life," said Mrs. Barish. "My son, Michael, used to say to me, 'It's not how long you're here; it's what you do with the time.' "


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Information in this article was accurate in November 15, 1998. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.