Our history will not be rewritten
by Sherri Lewis
It started with Charlie Sheen’s widely televised disclosure about his HIV status and his search for the cure in Mexico and a quack doctor by the name of Sam Chachaua. Sounded a little like a treatment for a Dr. Seuss book—not solid advocacy about HIV treatment!
Activists heard the alarms and off they ran like firefighters, sliding down their poles and rushing to their Twitters and social media pages to rescue thirty years of activism and education about HIV that one celebrity’s ignorance was about to take down. I however was slower to advance to this emergency. Was it my own insidious complacency? Or, to be fair to myself, AIDS fatigue? After being an activist living with HIV for those thirty years, now half my life, I wanted to rest.
But my perceived retirement as an activist was not over. I engaged on social media, and I wrote to my doctor to see what if anything she could do to help. Then I checked out Dr. Oz with Charlie and his quack doctor, and watched Real Time with Bill Maher, who was actually giving this quack prime time on his HBO show. Maher even supported what this quack was promoting, injecting milk from an arthritic cow that he claims cures cancer and AIDS! Of course all this and other claims to his brilliance were quickly dispelled by quick articulate AIDS activists.
Listening to and watching Charlie was heartbreaking. He was so shaken and broken, trying to keep it together. It was obvious he was in a lot of distress. I remembered feeling the same way he did. Terrified, desperate but keeping a smile on my face as I faced my family, friends, and fiancé. Charlie was in the dark in public, a scary place to be, uneducated about HIV and a perfect target for anyone that would offer him a cure for a lot of money. He had stopped taking his antiretroviral medication, direction given to him by Sam Chachaua. Thankfully, Charlie dumped the quack and returned to his antiretroviral medication but is still on his quest for a cure. And who isn’t? Dr Oz is doing a series of shows with Charlie Sheen so his progress will be public.
Then this happened.
The former First Lady Nancy Reagan died at the ripe age of ninety-four. Lucky her, and condolences to her family. Both she and her beloved Ronnie, President Reagan, are together again. The news of her death left me cold, just as I remember her. Yes, of course our elegant current First Lady Michelle Obama will say some nice things about her but there’s a world of difference between these two first ladies. And it’s not because of the times; it’s because of the people they are. People shape our history by how they respond to life. People mark an era. And you only hope to be on the right side of history when it rolls out. The Reagan era cannot be revised, certainly not by Hillary Clinton, who heaped upon Nancy glowing accolades about her part in the fight against AIDS. After activists spoke out, Clinton retracted her version of history. The Reagan era was what it was and is forever our history. That’s not a news blast but to some it may not be that big a deal. There seems to be a revisionist groundswell going on. On social media there’s a lack of real empathy about the AIDS story. The posts are from a younger generation. So I am compelled to say something, share some stories of that history though I’m uncertain what will come of it. I just have to say what I need to say.
Some people think of the eighties as a fun time with pop music and wacky fashion. It was for a minute and then it wasn’t. A sharp contrast to the neon colors and spunky punk beats there was a darkness hovering over our little colorful village. It was called AIDS and it would become the holocaust of the eighties.
You think I’m exaggerating? Being too dramatic? Not really.
Most people have seen images of the Holocaust, the devastation, the horror how people suffered. How could anyone allow that to happen? Where’s the humanity? The photographs of people with AIDS from that time looked like they were in concentration camps. Wasting away, unable to hold down food, young people suddenly becoming “elderly” with no immune systems left to protect them from Kaposi’s sarcoma, dementia, blindness and yet not a word from our government. Not a whisper. I can’t tolerate that apathy. Even walking on World AIDS Day in Los Angeles this year the turnout was sparse, and I said to a friend of mine, “Where is everyone?” as we walked down Santa Monica Boulevard with our candles, in memoriam. “Well isn’t this what we wanted?” he asked. I was confused by his response. Was he meaning to say, don’t you want people not to get infected anymore? Of course no one in his or her right mind would want anyone to get infected with HIV. But the walk isn’t a protest; it’s in memoriam. Did I want this younger generation to be apathetic and not really care except superficially? God I hope that doesn’t happen.
During the 1980 elections I was in my early twenties and living in New York City. On election night, like I had done so on many nights, I was hanging out with my friend Richard Cheney, (ironic name for him to have) in his fabulous bohemian Chelsea loft with his boyfriend Ron Barretta. Richard in his kimono with a cigarette holder in one hand puffing away and a martini in the other, we sat and watched the election results. Suddenly Richard said, “Darling, if Reagan gets in we’re all going to die.” A chilling prediction. I was stunned. But his prediction was, dare I say, dead-on.
Several years later, Richard was sick all the time and diagnosed with ARC. (ARC, or AIDS-related complex, is a term that has not been used for decades; it means your T-cell count was not quite low enough to meet the criteria of an AIDS diagnosis but your health is in serious decline.) He got sicker and was finally diagnosed with AIDS and was hospitalized. It would become his new residence. Richard was a fashion designer and artist who painted murals that now covered his hospital room walls. His deco vases from his home were overflowing with fresh birds of paradise and his other favorite exotic flowers. Ron took care of him even though his own health was failing, but was not as progressed as Richard yet. I remember thinking how frightened Ron must be seeing this happening to his beloved boyfriend, knowing that soon that would be him.
Friends lined up in the hallway to visit. All of us scared but hearts full of love and courage. Ron met with us in the hallway and briefed us with an update on Richards’s health. We supported each other as we entered his room, putting on our best party faces. I remember stroking Richards’s boney beautiful hands, his long fingers that were always manicured. I wiped the tears off his face that were streaming from under the eye packs that had been applied because his eyes were bothering him. We kept our conversation light—fashion, manicures, gossip—and then hopeful with the news of AZT.
Departing Richard’s room, we were somber and silenced by the horror, panicked by the level of the atrocity of AIDS and terrified who would be next. The impending doom knowing that Richard was close to the end of his life was unacceptable. He would be my first friend to die of AIDS. There would be many more. This scene and Richard’s story was all too common, as thousands were lying in hospitals dying and being cared for by their own sick friends. It was an epidemic. It was a plague. It was a gay disease at the time, or so they thought, and only we seemed to care. ACT UP was taking the fight to the streets and leading the way to the powers that could hopefully help to save lives. To get action for treatments and expedite the process that daily was taking lives. AZT had just become available to only a limited number, those with some money and the very sick, those near death’s door. Everyone hoped that would be the answer. The unknown, this frightening world we suddenly found ourselves thrust in had no treatments and no hope.
Richard died. It was a long, slow suffering death, the kind mixed with relief and grief. Relief when he died because the suffering was over and the slow thaw of grief that followed. Ron died soon after. I can still hear his soft voice. There was little time to grieve as one friend after another fell sick and died of AIDS. It got to the point you didn’t want to ask how a friend that you hadn’t seen in a while was doing because the response was always in that dreaded tone, “Oh, you didn’t hear…he died.”
All this time, over 20,000 and escalating lives gone and their grieving friends and families devastated and President Reagan never whispered a word. Our government under the Reagan presidency was criminal in its negligence during the AIDS crisis. It was heartless and cold, even to the Reagans’ friend Rock Hudson. The shame belongs to them and to no one else, certainly not the sick, suffering or dying. Silence equals death.
During this time, my roommate Laurie was exhausted all the time. Hot rashes ran up and down her body. She was running high fevers and her body was covered in hot red rash. She was in and out of the hospital emergency room always with the same answer. She’s got the flu. Rest, drink plenty of fluids and take asprin. Because she was a woman no one even suspected she might have AIDS since it was a gay disease. Laurie’s health rallied and she moved out of my small apartment to her own place. About a year later we bumped into each other. She had gotten very thin. “Oh my god you’ve lost so much weight!” I exclaimed. “What are you doing?” “Oh I’m having a lot of sex and it keeps me skinny,” she boasted. But something was not right.
Several months later Laurie’s mother called me crying. Sobbing over the telephone, she said, “Laurie’s in the hospital. She’s dying. They took every conceivable test and they don’t know what’s wrong with her. Can you come see her?”
When I got to the hospital there was a sign on her door that read “CAUTION: Body Fluids” and a basket next to the door with a gown, gloves, and a mask to put on to protect yourself when you entered her isolated room. I knew where I was. Richard had the same sign on his door. I was on an AIDS ward. Nobody gets out alive. Laurie was in the final stages of AIDS. She had a brain infection and was hallucinating. Her arms were flailing around trying to swipe at things that weren’t there and her eyes were rolling around in her head. I was frozen. I couldn’t leave her side. Her mother sat in a chair in the corner of the room with dark sunglasses on and said, “We know what she has but we’re not going to talk about it.”
For one brief moment Laurie’s eyes connected to mine. She said in her frail, wobbly voice, “They spent a lot of money on this wing,” She knew where she was. Laurie was a graduate of the University of Arizona, a biochemist who worked in the very hospital she was dying in from a disease no one wanted to talk about. Not even the President of the United States. Laurie died a couple of days later. She was just thirty years-old. Her mother was devastated. It was all too much. Her obituary said she died of a rare cancer.
A few years later, I was living in Boston with my fiancé. We were both excited to start our own family. I wanted to get pregnant the minute I said, “I do!” I was thirty-two he was forty with a teenage boy he raised on his own. We were good to go. After Laurie’s death the chilling image of her kept flashing through my mind. With an HIV test now available I thought it best for me to get tested and get a clean bill of health before I got pregnant. Instead, on April 12, 1987, my thirty-third birthday, I was told I was positive over the phone by a doctor who had never given those results before. My fiancé was negative. We married and stayed together for seven difficult years. There would be no babies. No career. And little sex.
I am a long-term survivor. I am a veteran of the AIDS war. I live with those traumas that are seared into my memory forever, just like any soldier who’s been in a war, or any survivor from the Holocaust. Being handed a death sentence while young and on the threshold of the happiest time in my life and most productive years of my life was shocking. And though there was no way to know what living with this disease would be like for thirty years I know it’s by G-ds grace that I’m still here to have witnessed medical breakthroughs and someday the cure, just like Charlie.
The history and mighty success of the great AIDS story are so vast and sacred. They are our lives and for many of us our footprint on this earth. There will be a home for our history at the National AIDS Monument in West Hollywood, California (www.aidsmonument.org). It will be the first of it’s kind. It is a work in progress, currently still raising funds. It will ensure there will be no revisionist to deny or minimize our history and the depth of our stories, so that those we lost will live on through us. The multiple losses our government and who was President during those horrific years will not be glossed over. The truth will be told, as the historians have known it for decades not the revisionists.
We will never forget.
It is our atonement to right the wrongs. If we stay vigilant I believe we can find peace.
I am good person. I am a woman. I am an activist. I am healing. I am alive. I am a survivor. I am still here.
“To remain silent and indifferent is the greatest sin of all.”—Eli Wiesel, Jewish writer, professor, political activist, Holocaust survivor and Nobel Laureate
A native of New Jersey, Sherri Lewis spent her twenties in New York City as an entertainer. She was diagnosed HIV-positive in 1987 after going for a routine blood test for her marriage license and been an activist living with HIV for thirty years. Sherri is currently living in Los Angeles with her dog Romeo, recording music and writing her memoir.