Sherri Lewis had two Top 40 singles in the 80s. Her music video
““ petticoat, big hair and all ““ aired on MTV during the
network’s first year. She was on the popular television show
American Bandstand. She toured Europe. She was engaged to be
married.
She learned she was HIV positive on her 33rd birthday, April 12,
1987.
Lewis, who had spent her 20s in front of the theater curtain or
the television camera, was suddenly left alone in a room. The
doctor had shaken her hand, wished her luck, and walked out.
In 1987, her world fell apart. In retrospect, she is matter of
fact.
“It’s not that he was a bad doctor,” she said.
“No. 1, I was the first person he had ever told was HIV
positive, and No. 2, there was not much more information to give
me.”
Since her diagnosis, Lewis has actively earned recognition
different from the type that comes with MTV music videos. Bruin
Plaza will be her stage today when she speaks at noon as part of
the World AIDS Day festivities at UCLA.
Since moving to Los Angeles from Boston in 1996, Lewis has
worked with the UCLA AIDS Institute and other AIDS organizations
and speaks frequently around the state about her experiences. She
also counsels women affected by the virus.
Lewis now refers to the 1980s as the dark ages of the AIDS
epidemic, with little scientific attention paid to the disease and
even less information available.
Facing a lack of medical treatment when she was first diagnosed,
Lewis began a regimen of holistic healing: acupuncture, wheat
grass, meditation, carrot juice.
Her friends said she was the healthiest person they knew.
“I was really conscious and totally grateful that I
wasn’t in a hospital dying everyday,” she said.
“All of those things were my path to wellness.”
As researchers and doctors were trying to come to grips with the
silent beginnings of an epidemic, which was still largely seen as a
disease of homosexual men, Lewis began putting her world back
together by taking action.
She started pre- and post-testing counseling in Boston, and
organized peer-support groups. After people had learned they were
HIV positive, Lewis was there to hold their hand and offer comfort
and information.
“It was important to me to ease that news with some
hope,” she said. “And that’s how it started for
me. My healing started very quickly there.”
In Boston, Lewis found herself under the spotlight again in 1994
with a theater group, The Improbable Players, where she helped
develop and acted in a play “Passing it On,” about HIV
and substance abuse prevention.
“She’s inspirational,” said Lynn Bratley, the
director of the theater group, which was founded for professional
actors who were also in recovery from substance abuse. “She
attracts a lot of people because she moves in many
worlds.”
Although they haven’t seen each other in several years,
Bratley remembers the frequent parties Lewis would throw at her
home. She remembers the closet, full of fancy clothes from the
early days of her career, which Lewis donated to a local AIDS
action committee.
“I think it was a very courageous thing to do to come out
on stage at that time,” Bratley said. “Not too many
people were open about the virus.”
Lewis’ first public speaking engagement was done as a
favor for an HIV-positive friend, who couldn’t make it.
“He passed the torch to me, and he died,” she
said.
Several years later, Lewis has shared the torch with dozens of
others. She now trains other HIV-positive women in the art of
public speaking through the organization Women at Risk.
In the decade that Lewis has been active in this cause, many of
her friends have died around her, casualties of the AIDS war,
“the terrorism of the eighties and nineties,” she
said.
Just last week, she buried a friend who had been co-infected
with HIV and hepatitis C.
“There’s always sadness, there’s always a
certain amount of grief. But I can’t live in that, so
I’ve moved along into working with others, getting to a
solution,” she said.
The first glimpses of a solution came in 1995 with the
introduction of protease inhibitors, the first drugs that could
block an essential part of the virus’ proliferation
cycle.
Lewis had been asymptomatic for 15 years, but in 1996, her T
cells, the immune cells targeted by the virus, dropped for the
first time.
The new drugs were like an answered prayer.
She now takes four different pills every morning, and two more
pills every night.
“Every time I had the pills in front of my meal, I would
take them and I would eat, and I would weep,” she said.
“I had been praying to God to keep me here until they
found something. Up until then, it was up to me, and something came
through.”
The breakthrough of protease inhibitors, however, held the
unforeseen consequence of complacency: HIV education campaigns
slowed, research funding plateaued, and media coverage fell.
“People turned it into a cure, people thought it was over
and it lost fire,” she said.
“If you don’t learn from your mistakes, you repeat
them and the numbers silently escalated.”
The spread of the virus increased in the young gay community and
among women.
Awareness has been revived and strengthened in recent years by
“old-timers” in the AIDS community like Lewis, who
remember when the mistakes were made the first time, and made some
noise.
That noise reached Jonathan Aubrey, now one of Lewis’
close friends.
“I’ve gained a sense of myself as being part of a
greater whole,” said Aubrey, who works for HereTV, a national
gay and lesbian television network.
“I’ve gained a lot of hope and courage from knowing
that I’m part of a community that has been ravaged by this
disease, and come to understand a certain sense of responsibility
for this epidemic,” he said.
Aubrey is not infected, but he volunteers with Lewis, and has
been inspired by her dedication to the cause.
“I was on a path of engaging in a lot of risky behavior,
and she came into my life at a really difficult time,” he
said. “She set me on the right path to living a healthy
life.”
In her flurry of activities, Lewis has touched many lives,
brightened and bettered them, by encouraging involvement.
“I have less fear, and more respect for myself. I
definitely improved the quality of my life knowing Sherri,”
said Margie Davin, who learned she was co-infected with hepatitis C
and HIV in 1987. “I laugh a lot more.”
Thanks to a friend who Davin says is “funny as
hell.”
The two meet every other week to talk about the issues that come
with living with the disease, and to simply laugh.
In the changing climate of AIDS research, she encourages people
to make a routine of getting tested for HIV, particularly young
women.
“The war is far from over. The research and medication
that we have today, certainly are important to sustain and provide
longer lives, but people have to take their part,” Lewis
said.
“That’s what testing is all about. It’s being
responsible,” she added.
Lewis, who turned fifty this year, has had the time and
experiences to develop a close relationship with death.
“I’m not afraid of dying, I’m afraid of the
suffering,” she said. “I’ve been intimate with
death. I’ve been up close and personal.”
She has come a long way from the days when she never dreamed of
seeing her 50th birthday.
“I’m always overwhelmed that I’m still here,
and I’m still as well as I was,” she said.
“Nothing physically has changed for me, but emotionally
and spiritually, everything has changed.”
She has also seen the change in the mood of World AIDS Day since
the first one in 1988. From somber memorials and candlelit vigils,
to events filled with music and film commemorative and
celebratory.
“I’ve gotten a lot of people’s stories in me
from their confidences, and when I speak it’s not about me.
It’s really sharing the stories of those that couldn’t
be here to do that,” she said.
“That keeps their stories alive. It keeps their lives
present.”
She can hardly contain her excitement about the way the AIDS
campaign is going, how far they have come and how much more there
is to do.
“It feels like Christmas,” Lewis said, and
laughed.