Former Pop Star Sherri Lewis Talks About Living With HIV
By Bonnie Goldman
Table of Contents
- The Shocking Discovery
- First Steps After HIV Diagnosis
- Singing in a Rock and Roll Band
- Trading Max's Kansas City for AIDS Counseling at Harvard
- Getting Divorced
- Medical History
- Spirtual Support
Let's start at the beginning. How did you find out you were HIV positive?
I found out I was HIV positive in 1987, when I went for a blood test for my marriage license in Massachusetts, where I was living at the time. I was perfectly healthy, and I wanted to get a clean bill of health.
The AIDS test had just come out. It was brand new. I knew one woman who died of AIDS, but they said she had cancer. Anyway, it scared me enough that I asked to get an AIDS test three months before I was getting married so I could get a clean bill of health, get pregnant and get on with my life.
That's how I found out. Three weeks later, my test came back positive and I was shocked.
Did you think that you weren't at risk?
I didn't think. I was hoping I wasn't at risk, because my high-risk behavior -- my unprotected sex years -- was several years behind me.
I didn't think about my fiancé's history. There wasn't any AIDS education in my brain. There wasn't any AIDS education to be had.
The only thing that was around in the '80s was gay men dying of AIDS. I didn't think it was my problem.
But when I saw my first friend die of AIDS, who happened to be a woman, it was the hard way to get that education. I got scared and I thought I should just get a clean bill of health.
My whole thing was that I wanted to get pregnant after I got married. I went for the clean stamp and I didn't get it. I was shocked. Then I was terrified because I could have infected my fiancé, and he was a single parent.
I thought, "Oh, my God, what have I done? Have I taken away this boy's father?" It was just the worst.
How did you tell your fiancé?
He knew I was getting an HIV test. We all felt pretty confident that I was fine. I was just neurotic about it.
He just said, "Just get it out of the way."
My parents said, "Stop worrying; you're fine."
Everybody felt that way.
I had friends who were also at risk, who went and got tested. They had pretty hard histories of drug abuse and all kinds of stuff, and they were coming up HIV negative.
It was Russian roulette, so that inspired me to go. Everybody around me figured, "Oh, she's fine," because I was healthy. I had no symptoms.
It was 1987.
It was '87 and you never, ever, ever heard about a woman getting HIV. My friend who died of AIDS had been my roommate a couple of years earlier, before I ended up seeing her in the hospital, wasting with dementia.
She had high fevers and these red, prickly rashes. She was severely fatigued and couldn't get out of bed. I thought she was just being lazy. I would take her to the emergency room when she had these fevers. The doctor just said she had a flu, take her home and have her drink fluids.
There was no suspicion at all that maybe these symptoms ... maybe we should check her for AIDS. That was not the thinking. It wasn't in any of our consciousnesses.
It just went that way until she died. A sign was on the door that said, "Caution: body fluids." She was in an isolated room. You had to put on a gown, a mask and gloves to go in to see her. It was pretty obvious that they thought she had an infectious, deadly disease, but nobody said, "AIDS."
Wow. Where was this?
This was in New York.
It was very early on. Her obituary said that she died of a rare cancer.
Her mother whispered to me, "We know what she had, but we're not going to talk about it. Please make donations to the cancer foundation." It was just, "Shh, don't talk about this."
It was so devastating and frightening; you didn't want to say it. You couldn't think it. When it happened, you just couldn't tolerate it -- the pain was agonizing.
Was that because it was 1987 and HIV/AIDS was almost invariably fatal?
At that time, if you got a positive test, it was a death sentence.
People got diagnosed when they were dying. They didn't get diagnosed ahead of time. There was none of this world that we live in today. They had just come out with AZT [Retrovir, zidovudine] for only a specific group of patients -- those that were wasting away, who were hopeless, they would give megadoses of AZT, because people were protesting and screaming, "Help, help! Get us something! People are dropping like flies!"
It was gay activism that got the ball rolling. Otherwise, God knows where we'd be today. It's really because of them that we have what we have today.
Were you at all active in those years?
I was living in Boston. I wasn't in New York. I wasn't on my home turf. I was active in counseling and helping others tolerate getting the results that were death sentences. I wanted to help someone else deal with the news that I was handed. I knew I could be of service that way.
So that's how my activism took place. It was almost kind of feminine of me. I wanted to be the healer, the protector. I wanted to help that way. I was very frightened.
Sherri as a child on Romper Room, which was a popular children's TV show in the U.S.
Let's go back to when you first found out you were HIV positive. What were the first things that you did?
When I found out, I found out over the telephone. The doctor told me over the phone. I basically hit my knees; I went and hit the floor, in shock and horror.
The doctor said, "Could you and your fiancé meet me at the hospital so we can talk about your HIV news and what it all means?"
I said, "Yes."
I started to pray when I got off the phone. Like, "Please, God, help me."
I couldn't believe this. Then I called my fiancé at work and said, "It's really bad news. You need to come home." And he did.
I told him, and he was shocked. He locked himself in a room, and he started to scream and cry. It was just horrifying. Then, his son came home from school and it was just too hard to even look at him.
Then we met the doctor at the hospital, like I had said I would. He met us on an AIDS ward. I knew: this is the beginning of the end.
We walked down that long corridor, sat in an empty room, looked at the bare mattress and wondered who had just died.
I thought: When will this bed be mine? Am I going to have dementia? Lose my eyesight? When is this all going to happen?
I asked the doctor those questions, and he had no answers. He stood up, shook my hand, wished me good luck and walked out of the room. I knew that was the end.
When you walked down that long corridor, what did you see?
I saw very little nursing staff there, because no one wanted to work on the floor with AIDS patients at that time. I saw people sitting up in their beds -- everybody on IVs [intravenous therapy]. It looked like death row.
You'd hear them moaning. You'd hear people calling for help, just for a bedpan. Nobody was coming in to help anybody. I don't know that anyone today realizes the horror that that was, and the shame that this government never stepped up to the plate. This is what I saw happening in the '80s and the '90s. Up till 1996, it was downhill.
It's never good news to find out that you're positive; it's always difficult. But the history is so important to know, because those days were just horrifying.
What happened after this meeting with the physician? What did you do next?
That very day, when we went to the main floor of the hospital after leaving that ward, my fiancé had to be tested.
We were terrified. We were learning about HIV the hard way. I sat next to him and thought, "Oh, my God. What have I done? He's got to get an AIDS test." But he didn't have any qualms about it. He was a real man about it. He went downstairs, had his blood drawn. Those were then the worst three weeks of my life.
I say three weeks, because that's what it took in those days, while you waited with bated breath for what your results were. Am I going to live, or am I going to die? That's what those test results meant.
Wouldn't he still have to wait another three months after his last sexual exposure?
First of all, we were engaged. Our wedding day was three months away. Wedding invitations were in the mail; the wedding gown was being made. So I went from the happiest time in my life to the worst possible scenario. It was so bad; it was a joke.
The only thing we could do together, God bless him and I, was look at each other and laugh -- not hysterically, but in shock. We were thinking, "This is so bad. This is insane."
We looked at our bedroom and both of us kind of had the same vision -- we envisioned a coffin. It was that bad. It was that bad.
Then I had to go back to New York to continue my wedding plans, all the while waiting for his results. He didn't call me for three weeks. I really thought this is it. He's going to leave me at the altar. This is over.
But you were still making your plans.
I was, with my friends' support. They were saying, "Sherri, he's just digesting it. It's tough news. Just keep moving forward."
They had me moving forward. They just wanted me to stay. I guess, when I look at it now, they were keeping me in life, keeping me in hope. If I had been abandoned, or walked out on at that time, I probably would have killed myself. It was that horrifying. To think that you could be walked out on, and abandoned, when you're going to ... you know, with all those circumstances, it would have been the end of the road.
I was 32 years old, the prime of my life, preparing to get married and have a family. So the timing, on all counts, was horrible, because I was at an age where I wanted to get pregnant, and also, this was the time I needed to get pregnant.
So AIDS wiped me out of that.
I assume your family is from New York?
What happened when you told them?
They were shocked. I think the first thing is denial. It stunned everybody. "How could that be? They made a mistake!"
These were the things they said. "They made a mistake. Look at her, she's healthy." My father was very macho: "They don't know what they're talking about! Not my daughter!"
I have an older brother. He didn't really talk about it. My nieces and my nephews were young at that time, but I eventually sat down and told them when the youngest one was in high school and the two others were in college.
They had typical denials: "Well, Aunt Sherri, you did drugs." I said, "Well, you have unprotected sex. Everybody drinks."
They were drinking. A lot of people smoke pot and drink.
Everybody wants to exclude themselves. That's why it's so important to keep talking about HIV, because everybody can get HIV.
But it sounds like you had a pretty loving and accepting family.
Yes. Everybody went on with their lives. I'm not surrounded by people who join me for an AIDS walk. Everybody went on with their lives, doing their own thing. It's 22 years later and their lives have gone on.
I have support. I would say my mother has been my greatest ally. Do you remember that scene in Philadelphia, when Joanne Woodward, the mother, was talking to Tom Hanks' character, and she says, "How were your blood tests today, honey?"
That's my mother for 22 years. "How are you feeling?" "How's your liver?" Because I have hepatitis C, too.
When one person is infected, everyone who loves that person is affected. That's been my experience. It's a long road. Now my mother's 76 and I want to help her. I'm concerned with her. HIV has taken a toll.
I have succeeded at living with HIV, and living healthy with it. But it took a big bite out of my life. Life interrupted. Career interrupted. Personal life: no children. Married and divorced.
My activism had to be first and foremost. The first 10 years after my diagnosis, I thought that I was probably not going to be here very long.
Let's go back to when your fiancé was in Boston, waiting for his test results. What happened when he found out?
When he found out, he showed up at the altar, the night before the wedding. His test results came back negative.
So you continued with plans, even though he hadn't called you?
Yes. My friends were pushing me: "Don't worry. It's going to be OK. He's just digesting the news." They were supporting me.
By the way, when you told your friends, were they cool about it?
I was the first person they knew to be diagnosed with HIV. For a long time, I was the only person they knew.
They didn't stop talking to you, or anything?
No. I want to say this. I was in recovery for alcoholism and drug addiction. So my friends were my support system in a 12-step program. Those people give you unconditional support.
What they said is, "You're going to be OK, Sherri."
They kept saying, "You're going to be OK."
The doctor couldn't tell me I was going to be OK. The doctor said, "Take good care of your health," and gave me the handshake of death.
But my support system, before there was anything like a support group, or the focus on living with HIV was even an idea (because people died for so long), I had that. I had friends in that fellowship. Some of them, I don't even know their last names -- and it doesn't even matter -- they told me, "You're going to be OK, Sherri."
As a result, I never had to take a drink or a drug to escape the terror that I was in. I focused on hope, one day at a time -- sometimes it was a minute or an hour at a time in those early months when it was too terrifying to even go to sleep -- and I got through it.
They said, "Don't give up before the miracle. It's right around the corner." We really needed a miracle, whatever that is.
When was it that you got your first CD4 count and viral load?
When I got my results, I went to an internist; they didn't have an infectious disease specialist for HIV yet. I had the same internist for 12 years. My first test happened, I guess, a couple of weeks after that. I went right to the doctor and got my CD4 count, which was 750, which is why I had no symptoms. When I put it in the context of the information that we have today, I was probably undetectable, but we didn't have a viral load test back then. I was asymptomatic, so I was totally healthy.
The chances of my having an uninfected baby were probably really good, if I had played Russian roulette, which I wasn't willing to do, because we didn't know anything. I didn't want to infect my husband, either. We just didn't have anything. We had no data. We had nothing.
We were told we couldn't kiss. We were told saliva had HIV in it. I remember that. I remember telling my husband under my wedding veil, "Don't kiss me." This is the world I came out in.
Did your fiancé talk to you? When he said, "I'm going to go through with the marriage."
Yes. We had fights, crying. I begged him, "Please don't leave me now. I can't handle it. I don't know what to do." He kept saying, "This is too much for me. I don't know how I can do this." I said, "It's too much for me, too." That was our bond; it was too much for both of us. So we kind of just held hands and tried to keep going.
Thank God, we were starting a new life together. He was starting a new business. He basically built his business and worked, worked, worked. I focused on staying alive and healthy. He supported me in all ways -- financially and emotionally -- with holistic practitioners, diets, workshops with visualizations, the Louise Hay "Hay Rides," Bernie Siegel visualizations. These things gave me hope, and I was able to do all that.
I had a 15-year-old stepson at home, who I got to be a parent to for a couple of years. I knew that he was a gift from God, because I wanted to be a mother so bad, and this kid really wanted a mother so bad, that we were a marriage made in heaven. That partnership was a real blessing. I saw it that way and it worked. It was dark times, but I was looking for the light all the time and if you're looking for it, you will find it.
Because your CD4 count was so high, can we assume that you never had an opportunistic infection?
Yes. The doctor would just say, in those years, too, "Oh, you're healthy. Don't come back here for six months." Because all they ever did then was check your CD4 count.
Do you know how you got infected? Do you suspect who it was?
I guess I was infected by my boyfriend when I was in my 20s, which was through the '80s. When I was in my 20s, I did a variety of drugs, whatever came around. I felt invincible. I was in music. I was in rock 'n' roll. I had a boyfriend who was bisexual and I thought that was great.
This was pre-AIDS. What I did was not uncommon in 1979, 1980, 1981. We broke up in '83. He was my boyfriend and on Wednesday nights he had his night out with the guys. I would go, "That's fine. As long as you're not cheating on me with a girl." That was my head.
You said you were in the entertainment field in your 20s. Can you talk about that some more?
I was in a pop band. Zecca and I were partners. Zecca was my boyfriend. He wrote all the music. He was brilliant and talented, and still is today.
We had a band called Get Wet. My name was Sherri Beachfront to match the band. I'll tell you that in the music business at that time, there were only a few female artists -- not like today. There was Debbie Harry, from the band Blondie, and Pat Benatar.
There was no Go-Go's, or the Bangles, or Cyndi Lauper. There was Madonna, who at the time was still playing at Danceteria to a beatbox.
I had a band, and our very first gig was at a club called Max's Kansas City, which was very famous in New York, in 1979.
Lou Reed was in the audience, and he loved our band, and he asked us to open for him at his next concert at Columbia University, and we did.
The next thing I knew, we were in a recording studio doing a demo. Then record companies caught a buzz. We played at the Ritz on 11th Street, which was the rock club. It was packed. Then we had offers. We eventually signed with a man called Neil Bogart, who was quite famous in the music business, because he discovered Donna Summer, Kiss and the Village People.
He signed us up to be his pop stars for his new label called Boardwalk Entertainment. Suddenly, we were shot out of a cannon with a big record deal, the first videos of MTV. We were now bicoastal, living in New York and Los Angeles, California, where the record company was based, and where we did television shows, like American Bandstand, Solid Gold and the Merv Griffin Show, and where we made our videos. That was the sweet smell of success. It was quite an experience.
You also said that you have hepatitis C.
Yes, I got that as a teenager. I got a non-A, non-B diagnosis at 17 years old.
Do you know what the cause of that was?
Probably IV drug use, because I had experimented. I had an older cousin who was using IV drugs. I was a little kid, impressionable and I used those drugs with her. I got sick then. But they called it non-A, non-B.
Years later -- I don't know when the hep C discovery was; I guess it was in the '90s -- they finally said, that's hepatitis C. That complicates things. We know a dual diagnosis -- hep C and HIV -- is not fun.
The reason I asked you at that moment is because I thought it might have been during the rock 'n' roll years.
No. During those rock 'n' roll years, I have to say, I was a dancer, a serious dancer.
Whenever I say I'm a dancer, people think right away -- you were a stripper. I was a real dancer. I grew up in ballet class and jazz and tap. I had aspirations, always, to be in theater, musical theater. My band, Get Wet, was much more musical theater. It was more based on David Bowie, how he would do things. It wasn't a hardcore, bad girl rock band.
So my lifestyle was very focused on my career. I went to dance class in the morning. I had a vocal coach. It was kind of clean. I was embarrassed that I wasn't more hardcore, or even like Chrissie Hynde, who was my idol. I'd look at Chrissie Hynde and go, that's fabulous.
I was much more squeaky clean than that. I was really pop. The fact that Lou Reed liked me always shocked me, because he was so tough and dark. I was wearing neon petticoats made by Betsey Johnson, with spandex bustiers and matching gloves. So I was not funky. I was bright.
So those days were not drug induced like that. They were about drinking tequila, smoking pot. It was more about sex than anything else.
Now that we have got a sense of your entertainment past, let's fast-forward again to Boston. While you were married, you became a volunteer at Harvard Medical School?
I got a job: pre- and post-test counseling and facilitating a support group and individual counseling. We pretty much wore all the hats. That's also when they started going out to the projects to do needle exchange. Although, I have to say, I was not feeling very safe about being in the projects with the needle exchange. So I was not signing up for that. Like I said: I liked being in counseling. I liked when they came to me. You want your test? You want to talk about the results?
Sherri as a child.
Sherri at the Ritz in 1980.
I was involved with a Harvard AIDS study, on an 18-month grant. The study was pretty simple. If somebody tested positive, the question was: Will an addict seek treatment, or relapse?
In those days, seeking treatment from addiction when you're going to die of AIDS didn't really hook anybody into living.
I was trying to hook them in just by example: "Look, don't give up before the miracle. I've been living with it for five years, and I'm OK. You might be OK."
But that's one person doing jumping jacks in front of a community of drug addicts testing positive. So, that was my job.
Who were most of the people who tested positive at that time?
Men and women. Men show up more, because women are enabled. Men are out there, doing the crime, doing the drug deals. They are out there. Then they get busted, and they go to jail. If they're lucky, they can get to a rehab or facility. They do it different.
But women find another guy. If their old man gets arrested and goes to jail, they get another guy. They usually get the same type of guy, just that he's free.
We didn't see a lot of women coming in. It wasn't because they weren't infected. We always said, "They have children at home." Part of that's true. But they were also finding another relationship to be dependent on.
But given that you were still frightened of living with HIV, since you didn't know what you know now, and given that you were hoping for that miracle, how was it spending all your days with people who were finding out the most horrific news?
I used to come home from work and cry. My husband would pick me up in his BMW. I want you to have the picture: I live in Cambridge, Massachusetts, at this point. I'm talking to what we call "townies." These are not the rich people. Though Cambridge has a lot of rich people, because there are a lot of international students going to what are among the best schools in the world. But I'm counseling the townies.
My husband would come in, talking about a bad day at work. I'd say, "See that woman over there? Her husband's in prison, dying of AIDS. She has AIDS and she's dying. She needs to know where to place her two children. You have no problems."
I think that's something a lot of people forget. At that time, it was so important to find guardians for your children if you were HIV positive.
Guardians for your children and then your children have AIDS, and they have no treatment. I was so heartbroken that I didn't have children. I loved the children so much.
I was in my 30s. I was so primed to be a mommy. I was always dreaming. I'm a girl who grew up playing with a bassinet and a dolly. I dreamed of the day I could have a baby. When I first got my period, I thought, "Oh boy, I can get pregnant!" This was for me.
I would go to the pediatric AIDS wards. We don't have anything like what we had back then now.
At that time, people weren't picking up the babies with HIV. Of course, they found that if you picked up a baby and gave it some TLC [tender loving care] during the day, or night, it would actually gain weight and flourish maybe a little longer. The HIV medications were not child friendly. They didn't know what they were doing. It was still experimental. Babies were having diarrhea and couldn't handle the toxins. It was just a disaster.
There are not that many children that survived from those days. I know one young woman out here. She's 25 years old. She's had it for 25 years.
Tell me about your marriage at that point.
My marriage was never the one that I pictured. It didn't include sex.
You didn't know how to have safer sex?
We knew, but it was ... you know, condoms were odd. My husband was seven years older than me. He really was a child of the '60s and free. I mean, he didn't even wear underpants, let alone have condoms. Everybody was so free. We're coming out of sexual liberation, and all of a sudden, someone was saying, "Put a glove on it!"
So that wasn't a comfortable thing. But it was more uncomfortable having sex because you couldn't get that trauma out of your brain. It's a trauma. It's not like you could relax and go, well, so I have the virus ... A friend of mine once said, "Well, it's not a date maker, Sherri."
Forget a date maker. It's really hard to feel sexy. For me, it was so hard to feel anything. He was trying to be a good guy, a real guy, about coming in and wrapping himself in saran wrap and making himself cute and funny. I would say, "Just get away from me. I don't want ... " I just felt really bad. I felt like he made a very bad deal. He signed up for a happy life, with children. And it's not like we were an old couple that was entering old age, and committed to taking care of each other in old age. We were new. We only knew each other a few months, and we were young. All of a sudden, he wasn't going to have children. I was going to be a dependent, instead of flourish in a career, like I was coming in with.
When he met me, I had an agent. I was auditioning in New York to be in musical theater. I had just landed a runner up for an off-Broadway show called Beehive. Then everything fell apart. Not just my personal life, but also my career. I was like, wow, I can't do a show. I'll be getting sick onstage.
Because we didn't know. It's like you're going to drop dead any minute. You're going to get sick right away. So everything changed.
When you split up, where did you go?
I stayed in Cambridge, because my doctor was there, and my support system, with my friends, was there. I also had a new career. I had a job at Harvard. When that job ended, because the grant came to an end, I went right away to another organization, and started facilitating an HIV support group. But nobody ever showed up in these HIV support groups. If you got three people, and then one person died, then the next week, nobody came back. They were really horrible jobs. Before protease inhibitors, that's what that was.
It was so depressing, right?
So depressing. I kept coming home, saying, "I'm not having any fun!" I'm a giggly, fun person -- I was -- and I used to come home, saying, "I'm not having any fun. I hate my job."
It wasn't even about hating my job. It was hating the experience of this constant having a red ribbon on another piece of black clothing, burying another young person. I never met someone who deserved to die like this, ever. I've met some hardened criminals, some tough guys who have done some pretty tough stuff, but they were never bad enough. It was just ... it was criminal.
AIDS was a holocaust. It was a constant tsunami. It was the plane that flew through the World Trade Center every goddamned day.
People don't realize. When the horrors of 9/11 happened, I went through the emotions that I felt, back then, with HIV. It was, like, wow. Everybody rallied for this, but when I was watching this happen to all these people, nobody said anything. Except for the gay community marching in the streets, and a bunch of their friends, like myself.
Did you march in the streets, at that point?
I started doing the first AIDS Walks. I used to hear Act Up in the community center where I was counseling or waiting for people to show up in a support group.
I would hear packed rooms of screaming men -- mostly men. I'm sure there were some women in there, but I was so overwhelmed, I can't say that I saw any.
What you did see and hear were men's voices, rallying. It was a little overwhelming, to say the least. I'm not, like, a tough girl. Like I said: I was a girl who was wearing a petticoat and a bustier. I certainly got my combat boots on after a while. I had to go from pouf-pouf high-heeled slippers to combat boot mentality, because AIDS was a war.
When you separated from your husband, did you start to date?
I didn't start to date. Part of this was, I separated from my husband at the same time that my beloved father passed away. It came together because when my dad died -- and I was with him to his last breath -- I found my sea legs. I thought that if I could bear this loss, then I will have the strength to leave my unhappy marriage ... which it was.
That's when I left my marriage. He didn't leave me. He would have never left me. He would have soldiered on.
That's when I thought: This is it; this is the end of the road. I was grief stricken. I was grieving my dad and grieving the loss of my marriage, and the idea of what it never could be.
A few weeks later, I started looking around. I did meet someone. We went out on a date. It was attraction right away. I didn't have sex with him for probably a couple of weeks. I kept sending him home, which was kind of weird for two adults that were heavy petting, and going, "OK, goodnight. Bye-bye." I thought, he must think I'm a wacko.
I had to have the uncomfortable discussion of: Hey, this is the '90s. You have to use protection and have you ever had an AIDS test?
I really did that. He said, "Oh, sure. I'm all about protection."
So he acted like that's not a problem. So that was good. Then he said, "Oh, yeah. I had an AIDS test. It was negative."
Now, I always say I don't know if that's true or not, but that's what he said. And it gave me the opportunity to say, "I had an AIDS test, but I wasn't quite that lucky."
This conversation happened over the telephone. It was the best I could do. There was a dead silence that felt like an hour, but it was probably just a minute. Then he said, "I still want to be with you and get to know you." And that's exactly what happened. He became my live-in boyfriend for the next seven years.
So that was my only date. Serious. And from that moment on, everything turned in my life for the better.
I felt like I was a part of life again. Because now I was actually in a sexual relationship.
He got himself AIDS educated. I wasn't going to play mommy and teach him everything. He went and he got his own AIDS education and it was great.
My work was growing and growing and he was also a creative person, like myself. He worked in production and sound and music. I was still a singer and a speaker.
Now I was an AIDS speaker, speaking out. I'm a total AIDS activist. Now I'm speaking in classrooms. I'm speaking at the State House in Boston, with Mayor Menino.
For the 10th anniversary of my own diagnosis, and of AIDS, I wrote my one-woman show. I put it in a theater in Boston, the ICA [Institute of Contemporary Art] theater. It was a musical. I showed my films from the old days. I told my story in a comical way. I had some clients there who told their stories. We held it in the theater for three weeks, and gave some of the proceeds to local AIDS organizations. That was a great 10th anniversary. What a celebration!
Had you already started HIV meds by the time of your 10th anniversary?
What was your CD4 count after 10 years?
My CD4 count stayed in the 500 to 600 zone for the 10 years. I did holistic therapies, wheat grass, acupuncture, Chinese herbs, some vitamin therapy -- all on a weekly basis. I was very committed to it, like religion.
But I didn't do these things without professional help, holistic practitioners. I didn't go, "Oh, I read this," and pop that, because vitamins can be very toxic.
Now, mind you: doctors were still saying things, and clinical trials were happening, and vaccine trials, all kinds of stuff. I was always being recruited.
I always said less is more -- total program stuff, total 12-step program stuff -- less is more. If it's not broken, don't fix it. I'm not broken.
They were pushing drugs then. So I stayed off of that and stayed holistic. I had the luxury of good health, so I could do that. I think that's what has saved my immune system today.
By the time I needed medication, when my T cells finally dropped in 1997 -- they went to 230, and I felt lousy for the first time, and I also got scared again for the first time -- my prayers had been answered. Because the combination therapies were available and effective for me.
So I started therapy in 1997, and my viral load went undetectable in a matter of weeks. My T cells went back to the 700s in a matter of weeks. The symptoms that I had -- which were shingles, fatigue and a severe rash that I had seen my friend, Laurie, have years earlier -- they all disappeared.
Did you have side effects from the medications?
I did well with the medications. I didn't experience any diarrhea or headaches or neuropathy.
What I did come to notice, a few months down the road, was lipodystrophy and lipoatrophy. We didn't have those names yet. I have a pretty well-balanced body; it's kind of a gym body; I lift weights; everything's proportioned well -- and all of a sudden my arms were bony and skinny, and my breasts and my belly had just blown up. My legs had gotten thin, and I had had muscular legs.
My face -- even though I have always had high cheekbones -- it was getting really narrow, and there was no fat in my face.
I took Zerit [stavudine, d4T], Epivir [lamivudine, 3TC] and Viracept [nelfinavir]. Of course, the Zerit and Viracept were removed, never to be seen again, because they believed that that was part of the problem with the lipodystrophy and lipoatrophy. Today my body isn't suffering that way. It has returned to a much healthier balance. I still believe in diet and exercise as being extremely helpful.
I believe you have to participate in the solution, and not wait for somebody to hand you the answer in a pill, or a shot. You have to do the best you can at bringing a principle of your own work there.
And what's your CD4 count now?
It's higher than it was 22 years ago.
And you're currently living in Los Angeles?
Yes. Hollywood, actually.
I hear you're writing a book.
That's cool. Is it going to be about your experience?
Because I'm getting old and I don't meet a lot of people with my story, not women my age, my length of time living with HIV. Of course, my own experience ... everybody has their own personal experience. I have heard many wonderful stories, powerful stories.
But I need to do this. I need to do this simply because people have told me I need to do it. They told me 10 years ago.
I said, "I don't want to write a book. What's the big deal?" I just wanted to do the play. I wrote the play, instead of the book I was told to write 10 years ago.
Now I think I'll try to write the book, because it's 10 more years of experience and these 10 years have been very challenging.
These are 10 years of medications, 10 years of aging. Now, we're about aging in HIV. I've been asked to speak on panels at several health summits for those who are 50-plus years of age over the last couple of years, and I'm always the only woman on the panel, because there are not a lot of 50-somethings. There are quite a few women in their 40s now who have been living 10, 12, even 15 years with HIV.
But my peers are these guys that are left from those early Act Up days.
Sherri in Get Wet.
Before we close, I want to talk a little bit about your spiritual practice. I understand you're active in a synagogue.
I am active in a synagogue. It's called Kol Ami, in West Hollywood. The reason that I really love this synagogue is because the rabbi -- even on Yom Kippur and during the High Holy Day services -- always mentions those that are sick and suffering from AIDS. They are specific. They don't just say illness; nobody's covering this up. It embraces the gay community, which has had so much of the AIDS burden on its shoulders. They have an HIV support group there, for Jewish people who have HIV.
It's comforting to know that if I ever get sick and need to be in a hospital -- as I grow older, that will happen -- that I'm also going to have a rabbi who can honor what my journey has been with HIV. That's very important.
I started this back in Boston. I was also a member of a reform temple in Brookline, Massachusetts: Ohabei Shalom. The prerequisite for my joining was saying, "Well, if you have more awareness about HIV, I'd be happy to join your synagogue." We had an HIV education weekend. I didn't even know there was a Jewish AIDS quilt, but there was. And they brought it into the temple for the weekend.
Do you feel that going to the synagogue and having that connection with God helps you? Do you think that is a very strong part of your surviving HIV?
I feel it. Just the word "survivor" resonates, being a Jew. Because, I had said earlier in the interview: The modern Holocaust has been AIDS. As a Jewish person, my father passed that to me: "You're a survivor, Sherri."
Even though I don't directly know any family members from a concentration camp, all Jews are descendents of each other. So I am a survivor and I am a survivor of HIV.
So that plays a very big part. I do feel the power of prayer in the community of my religion. I respect the community that people go to, whether it's Agape positive thinking or something else, because that helped me tremendously. The Louise Hay approach, all that, which is so embraced now with the new marketing of it as "The Secret." All of those things are extremely helpful.
How do you make a living now? What's your full-time job?
I still speak publicly. I have a small column. I wouldn't say I make a living from it right now, but I have a column in A&U Magazine called "One Voice." In that column, I focus on the stories of women living with HIV or involved in AIDS activism. I have been a counselor up until less than a year ago for an organization called Women At Risk.
I'm no longer working with them. I'm doing my own speaking engagements and life coaching, which basically is counseling. Helping people get on with the present parts of their lives, not just the grief of HIV. Not even necessarily HIV specific, but just getting on with the business of living.
It sounds like you have a lot to offer somebody who's facing a challenge. I was wondering if you could answer one final question: What advice would you give to somebody who just found out he or she was HIV positive?
If they just found out, they should find the phone number for a local place where they can speak to a peer. There's nothing like peer counseling -- one person with HIV talking to another. If it's a woman, find a woman. If it's a man, find a man. That's a good start.
If you have prayer in your life and a belief in a God of your own understanding -- whether it be Jesus, Buddha or the positive source -- use that like your life depended on it, because it will only enhance your life. You have nothing to lose, only to gain.
I didn't give up before the miracle, and the miracle showed up. My health is my miracle. The medications that were effective for me are the miracle. That's the source of spirituality that worked through me to get to the place that I am today with this. I would suggest that to anybody.
Great advice. Thank you, Sherri, for a great interview and a very inspiring recounting of your life.
This transcript has been edited for clarity.
Sherri Lewis can be reached via e-mail at firstname.lastname@example.org. She is available for speaking engagements throughout the U.S.
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