The Positive Side

Spring 2003 

The Goddess Flesh Club

How HIV improved my sex life and gave me goddess status

By River Huston

PLUSWomen’s Words: Laurette Levy, Brigitte Charbonneau, Janet Conners, Sally Richard

YOU MAY HAVE READ the title of this article and thought, “This girl must be deranged!”

But before you have me committed, please read on.

When I found out I had HIV, I thought my sex life was over. I’d never kiss again, let alone have sex. There would be no dating, no relationships, no children. I’d die alone in the hospital, untouchable, unlovable.

Actually, my issues around my sexuality began long before I was diagnosed with HIV.

At the age of 14, I was sexually wounded. This affected me in so many ways, especially when it came to trusting people. However, I believe that the most damage I suffered stemmed from my family and the media. Like most women, I grew up in a world that advised me that my looks and body were my most important assets.

Unfortunately, I didn’t get off to a good start. I was a chubby little tyke who no one cooed over. Usually the response to stumbling across me was: “Will she lose all that hair?” I never felt especially cute, and growing up with a mother who was obsessed with looks didn’t help. I remember at age 6 asking my mother, “Am I pretty?” Her delayed reply was, “Not really, but at least you won’t have to watch your looks fade.”

As a teenager, my self-esteem was below sea level. Yearning for love and affection, I went on a journey, searching for approval, which took me to places I don’t recommend — the world of drugs, anorexia and eventually prostitution. I saved and polished every hurt that curled out of the mouths of such wise sages as some John who told me, as I straddled him, that I was quite attractive in the dark. I had a little affirmation that I said to myself in those days: “You’re 25 years old, you’re a piece of shit and you deserve to die.”

It was a man with a few kind words and information about 12 steps who steered me in another direction. When I got sober, I embarked on a spiritual journey, went to therapy, found a higher power and started to change my life. My self-respect sprouted when I returned to school to get a health degree. I supported myself as an aerobics instructor and fitness trainer, which fit in perfectly with my ever-present eating disorder.

In my last year of college, that all changed.

Burger queen

I’d met the man I thought was The One — and he felt the same way about me! I had finally reached a point in my life when I didn’t feel I had to sleep with someone just because they smiled at me, so we’d been making out a lot but we hadn’t had sex yet. He suggested we get tested for HIV. Without thinking about how that could potentially completely change my life, I walked into the health department and had my blood drawn.

Two weeks later, I was told I had HIV. My boyfriend followed me as I ran from the office. He tried to comfort me, but as we got off the train and went our separate ways, I knew the relationship was over. I headed straight to the diner. I walked through the door, sat down in a booth and ordered French toast, syrup and butter. It was so good I ordered another. HIV… who cares?!

For the next year I explored the mirror image of starving / bingeing. I ate everything, as much as I wanted. Sometimes I stuffed myself until I was ill, and other times I gleefully ordered a burger, fries and chocolate shake and felt satisfied. Up until that point, I’d spent my whole life monitoring what went in my mouth. I’d starved, vomited and compulsively exercised to maintain a certain weight. Some people are afraid of spiders or the dark; I was afraid of Hellmann’s.

But, suddenly, with HIV, all bets were off and I could have anything I wanted. I was going to die soon, so what did it matter? Besides, food is a perfect anesthetic and I wasn’t feeling a thing — including all the initial terrors about being HIV+. Not feeling desirable? A glazed donut or six can fix that.Waking up in the middle of the night afraid I’m going to die alone? Don’t worry, have some buttered noodles.

I didn’t even realize I was putting on the pounds at rapid speed. Needless to say, my aerobics classes thinned out as I got thicker, and eventually I could care less if you had six-pack abs or the perfect butt because all I wanted to do was hibernate. I moved back to the small town where I was born and that’s where I discovered I was a sex goddess.

Fat is phat!

In those days, I didn’t look too closely in the mirror. I wore a new size, called One Size, and favoured flowing, floral prints. One day a friend came by to show me some photos she’d taken at a party. I pointed to a rather large woman with a double chin and asked who she was. My friend said, “That’s you!” That’s when I realized how big I had gotten. I’d gained about 80 pounds and had been doing a good job of ignoring it, but now there was nowhere to hide. I thought, I’ll go on a diet, but did I want my last meal on earth to be a Slimfast shake? No!

Instead I started the Goddess Flesh Club. The only requirement was to celebrate cellulite. I couldn’t get anyone to join, so I set out solo to love my fleshy self.

My first step in loving myself was to love others. I needed to change my perception of what was beautiful, so I designated all women in the universe as goddesses and went on a sightseeing adventure. No matter what shape, age, size, race or style, I could find something spectacular about any woman I encountered. As my perception of others shifted, it slowly started to shift for myself, though admittedly this was a lot harder.

I’d been picking myself apart for so long that the litany of flaws I possessed seemed endless, so I had to move slowly. One thing I did was ask myself a simple question: What did you do to be so awful? I had no valid answer to that question. I rummaged through all the hurts I’d collected in my lifetime — from the playground taunts of Sweaty Betty and Wilma the Whale to the hurtful brother who told me I was a fat, ugly pig throughout my entire adolescence.

I needed new input. I gave myself one hour each day when I didn’t criticize myself. If my inner loudspeaker called me a fat, ugly pig, I gently told myself that’s not true. Hours led to a day and days led to a lifetime, which brings me to today, when it’s become rare for me to call myself anything but lovely. But I am getting ahead of myself.

I had to accept my fat but I wasn’t ready to look at it. So I’d light candles, play music and touch the parts of myself I abhorred — my thighs, lower belly, ass. I’d talk to my body and tell it how soft it felt, and eventually I was able to face the mirror and remember to admire, not analyze. It also helped to turn off the TV and stay away from those horrid women’s magazines that proclaim all my imperfections every month. The funny thing was, when I began to feel better about my body I didn’t need to stuff my face anymore. I just ate when I was hungry, and some weight came off, but that wasn’t the point.When I finally came to from my food-induced oblivion, I had to start dealing with having HIV… which included dealing with my sexuality.

Sexual revolution

When you reach a certain weight in this culture, you disappear. My weight gain was a way to pad myself from sexual attention. I used to think it was safer to be fat than to meet some nice guy and eventually have to tell him I have HIV and watch as he goes through the gamut of disbelief, disgust and eventfully the need to depart. Some guys have stayed; granted, they wouldn’t be men I’d choose to be with if I was HIV negative, but, feeling like damaged goods, I thought it was all I deserved.

With the celebration of my juicy, ripe curves came a confidence about myself regardless of my diagnosis. After my goddess transformation, I felt I could disclose and hold my head up. I learned to feel people out first before breaking the news. For instance, when a guy asked what I do, I’d say I work with HIV+ women. If he seemed OK with that, I’d take it a step further and talk about a friend who’s positive. If he reacted negatively at all I wouldn’t give up, but I’d give myself some warning that this might be a little difficult and perhaps hurtful, and I’d evaluate whether I wanted to go further. (Should I get to know him a little, educate him before I disclose or just walk away because he’s not worth it?) I now know that I’m a fabulous, sexy woman and only a fabulous, sexy man will do. (Sometimes they’re hiding under an ignorant shell but it’s essential that none of us settle.)

I’ve had long-term relationships and one-night stands with HIV negative men. And I always disclosed no matter what because I just can’t relax and have a good time unless I’m up-front about my diagnosis. I tell men that they’re safer with me because they know for sure and won’t put themselves at risk. Just explaining “safe” can be erotic; it goes beyond a condom. In some way, I look at the AIDS epidemic as a sexual revolution because now, in order to be safe, we have to talk about sex and get specific. And if I’m going to all the trouble of disclosing, taking off my clothes and bringing out the equipment (condoms, dildos, vibrators, food items, outfits, etc.), then I’m going to risk saying exactly what I want and how I want it.

I’d been a receptacle my whole life, focusing on the pleasure of my partners. But as an HIV-enhanced sex goddess, my sexual experience now begins with communication and leads into experimentation, which turns out to be exciting for my partners as well as myself. This goes far beyond barrier sex (condoms, dental dams and gloves); it delves into role-playing, fantasy and making sex an event, not just a roll around the bed that ends in orgasm (and usually not mine).

Sexual adventure can also be solo. I certainly didn’t feel like I was settling when a few years ago I decided to forego relationships for a while and focus on moi. For my sexual pleasure, I engaged in masturbation.Masturbation is definitely not settling: I know exactly what feels good for me, I can make it last as long as I want, and I can do it with whoever I want because the biggest sex organ we have is our minds.

Finding Mr. Right

A couple of years ago, an amazing man came into my life. He didn’t fit the profile of what I thought my mate would be, but he’s an incredible partner. I never had to formally disclose to him because in my small town I’m the local loudmouthed activist. In our serodiscordant relationship, HIV is rarely an issue (his refusal to be intimidated by HIV between the sheets is one of the reasons I’ve become so attached to him).We have other concerns — he’s 14 years younger than me and sometimes I have to really work on my body image again because he looks like he walked out of a Calvin Klein ad. But I’m his goddess and he reminds me at every turn. It’s been a blessing I never thought possible. In all my past relationships, even when I’d stopped settling, I always felt a nagging dissatisfaction that they were not The One. That doubt has now melted away like buttah on a griddle.

Our lovemaking has ranged from amazing to stalled in its tracks; sometimes it’s erotic and sometimes it’s more loving and comforting. There are times when I don’t feel like having sex. Maybe it’s because I’m having side effects from treatments or an infection or I just don’t have the energy or desire, but I’ve learned in this relationship that we have to be honest, open and willing. I also need to recognize the reason behind my sex drive or lack of. Sex isn’t everything, but it is important. Besides being fun, pleasurable and even spiritual, it’s a way to stay connected.

So, after we spent six months renovating our house and stopped having sex out of sheer exhaustion, we needed to talk about making time and finding ways to stay sexually connected. There have been times we’ve played out a fantasy that he’s still into and I’ve become bored with, so I’ve had to find ways to introduce things into fantasy that excite me again.When I’m having an ugly attack, which usually indicates to me that I’m having some other insecurity, I can talk to him about it and he can talk me down. I don’t have to ask, “Honey, am I disgusting?” Instead I ask him to tell me what he likes about my body, and for him the list is endless… so endless that he recently got down on his knees and asked me to be his blushing bride!

I know I’ve found someone extraordinary. But I also know if I hadn’t found him, I’d already found myself… someone equally as magnificent. And after 12 years of healing, I always know the right things to do and say to remember that I am a goddess.

River Huston, 42, is an award-winning poet, author and journalist who is currently performing her one-woman show, Sex, Cellulite and Shopping: One Girl’s Guide to Living and Dying, across North America. Snippets from her book, A Positive Life: Portraits of Women Living with HIV, can be glimpsed on her website, along with photos of her dog, Buddy, at www.riverhuston.com.

How to find your inner goddess

When looking in the mirror, admire don’t analyze!

Start a love affair with yourself that includes gifts, kindness, encouragement… and a vibrator.

Find a part of your body that you love. (For me, it was my hands and my feet.) Focus on that body part until your admiration spreads to the parts you loathe.

Write a letter to whatever part of your body (hump, belly, legs) is upsetting you. Have that part of your body write a letter back.

Treat yourself like your best friend. Your best friend would never comment on the size of your stomach.

Encourage other people’s goddesses to come out.

Shift your perception and find something beautiful in each person you encounter.

Be kind and gentle in uncovering your beauty.

River’s top 5 goddesses

  My grandmother May

 Madonna

Rita Mae Brown

Lucille Clifton (the greatest poet who ever walked the planet)

Eleanor Roosevelt

Aromatherapy blend

SENSUAL AROMATHERAPY BLENDS: In aromatherapy, “scents” refers to essential oils that are used to promote physical, emotional, mental and spiritual well-being. Essential oils, when inhaled, act on the limbic system, the “emotional centre” of the brain, which is also responsible for our sexual behaviour and response. Use the following blends to create a mood for intimacy with a special someone in your life — even if that special someone is you!

The Sensual Blend: For massage, mix these essential oils in 25 ml grapeseed oil: mandarin (5 drops) sandalwood (4 drops) clary sage (3 drops). Or simply add the oils to your bath.

The Exotic Lovers’ Blend: For massage, mix these essential oils in 25 ml grapeseed oil: jasmine (3 drops) sandalwood (5 drops) rose (4 drops). Or simply add the oils to your bath.

The Seductive Bath Blend: Add these essential oils to your bath: ylang ylang (2 drops) patchouli (2 drops) orange (2 drops)

Caution: Avoid getting oils in your mouth or eyes. Undiluted essential oils should not be applied to the genitals. Some essential oils should not be used if you are pregnant, have high blood pressure or suffer from epilepsy, so be sure to consult with an aromatherapist.

Provided by Hazra, certified aromatherapist

Laurette Levy, 46

Diagnosed with HIV: 1991 (infected since 1985); CD4 count: 600; Viral load: undetectable. Writer. Volunteer at Voices of Positive Women. Toronto, Ontario

WHEN I was diagnosed, I’d been living with my partner and his son for three years. We were planning to buy a house and the future looked rosy. Six months after my big news and his seronegative status, my partner left after having broken up with me via telephone. Very courageous indeed! After that, I stayed alone for two years. Then I met a wonderful man who, when I finally told him about my status, took me in his arms saying, “It’s OK, I love you anyhow.” A few years later we were happily married… or so I thought.

Although we were very aware of the risks and always practiced safe sex, my husband got more and more afraid of being infected. So I became less and less proactive sexually and we ended up sleeping in separate rooms. For the first time, I started to feel ashamed of having HIV — me, who has always defended the rights of HIV+ women! That was unbearable. The failure of our marriage wasn’t totally linked to HIV, but it had a lot to do with it.

HIV has changed my relationship with my body. At first, I didn’t see my body differently because I was healthy. There was no visible sign of the disease. But when I started to get sick and take drugs, my body changed. It’s difficult to deal with, especially for a woman, because the image of the female body is so strong in our society; you have to be thin, young and beautiful. When you hit your 40s, your body changes, and mine changed in a strange way. My arms and legs got skinnier and my breasts got bigger.

In my mind, I’m still desirable. It’s always pleasant to feel that a man is looking at you. But my body isn’t desirable anymore because it’s become a danger. In the last few years, I’ve avoided meeting partners because I don’t want to explain my situation. I’m still very afraid of being rejected, so I protect myself by not meeting anyone.

There are a lot more HIV+ people out in the gay community than in the heterosexual community. Gay people know what HIV is. They have sex. It’s quite different for a woman. Many HIV+ women don’t even have sex with their partner. True, there are other things, like tenderness and massage, but it wasn’t the case for me. The HIV+ women I know who do have sex lives are younger. So, with me, there may also be an age problem.

Personally, I’ve given up on sex. I find that HIV negative heterosexual men are not willing to have a relationship. I hope it’s not the same for every woman. When your partner is HIV negative, it’s important to discuss the issue. You can have a different sex life that’s more geared toward tenderness and massages, touching the other person’s body. You have to keep an open mind, be willing to explore new things, not always penetration or things you used to do when you weren’t HIV+.

Don’t be afraid to talk about it. Don’t be ashamed to be HIV+. Don’t feel plague-stricken and don’t let anyone make you feel this way. We can’t let that happen because it’s extremely unfair and painful. We cannot accept that.

Photo: Jake Peters

Brigitte Charbonneau, 56

Diagnosed with HIV: 1994; CD4 count: 775; Viral load: undetectable. Vice-chair of Bruce House. Ottawa, Ontario

THE MEDS and my HIV status affect my sex drive. Sex drive? What does that look like? What does it feel like?

I had to resort to testosterone shots once a month. This month I had my fourth shot, and my sex drive is slowly coming back. I know it’ll never be what it was before I was diagnosed, but if I didn’t take the shot, my partner would have to wait for sometimes even three months. We’ve been together six years and I’ve never heard a complaint from him. Intercourse isn’t one of the things I’m into, because I’m terrified, even if my partner wears a condom. But we do have it sometimes. I try to protect him from getting infected. I wouldn’t let anyone get infected like I was. I live with HIV and I know what it’s like. So we improvise a lot. We’re into sex toys, movies, the Internet. I call this a healthy sexual relationship.

I don’t know what I’d do if my partner and I split up. I feel totally blessed. He’s the first man who’s accepted me for who I am. He also loves my grandchildren as his own. When we met, I didn’t tell him about my status for the first six months. When I finally did, the only thing he asked me was: “Do I have to worry about anything?” I said “never,” and it was never brought up again.

This relationship is a safe haven for me. My second husband infected me with HIV. I lived away from home for a long time, but I kept going back to him because I thought he was the only man I could have sex with. I went back not because of love or respect, but because of sex. Now I know the world can be filled with love and respect.

Photo: Jake Peters

Janet Conners, 47

Diagnosed with HIV: 1989; CD4 count: over 600; Viral load: undetectable. Wannabe retired AIDS activist. Hatchet Lake, Nova Scotia

FROM THE MOMENTFrom the moment we’re diagnosed, we begin a struggle to remain a whole woman. First and foremost, what we tend to become is a walking, talking virus. You become defined by your virus: You’re an HIV+ woman. You’re not young, old, a mother, a woman of colour, a schoolteacher… I don’t think that happens with men.

Still to a large degree, there’s a pretty dehumanizing element within the medical community. In some of my earlier experiences, somehow there was the assumption that I have the virus and therefore I’m not sexual anymore, I don’t really have the right to be sexual anymore. And, if I’m going to be, the onus for prevention of pregnancy and infection falls on me.

I cannot tell you how many times people (both within and outside of the AIDS community) said to me after my husband died: “Surely you can find a nice straight HIV+ guy out there.” As if the only person I could ever date again has to be HIV+. To me, that puts us into some kind of second-class place. So, it’s not bad enough how dirty or infected you feel once you’re diagnosed, but now you’re second class and you can only date an HIV+ man. I think it also speaks volumes about the perception of HIV+ men.

My husband, Randy, has been dead for nine years and I’ve been with my partner for three years. For six years I didn’t date. I completely withdrew. I was in mourning for Randy, and because his experience showed me what I could expect, I was also mourning the loss of my own future. I threw myself into work. And I surrounded myself within the gay community. It was kind of like being at a smorgasbord with your mouth wired shut, surrounded by beautiful, intelligent, attractive, interesting men that I could never have.

My partner Terry and I met at a single’s dance for “older” people. It had nothing to do with HIV. My best friend convinced me to go to these dances. It was my first big leap back into the straight social world. I met him at the third dance I went to. His response when we talked about my HIV status was: “Well, quite frankly, I probably feel safer with you than I would with any other woman. Firstly, you know you have HIV, and secondly, you probably know more about HIV prevention than any other woman in this province.”

This past December, Terry gathered our combined family and literally got down on bent knee and proposed to me.

There are so many people working against us continuing to be a complete or total woman, and it’s a battle, but we can do it.

Photo: Michelle Valberg

Sally Richard, 54

Diagnosed with HIV: 1993; CD4 count: 525; Viral load: 86,700. Riverview, New Brunswick

I GOT HIV in 1982 when I had a blood transfusion, but I wasn’t diagnosed until 1993. I didn’t cry when I found out. I went outside, got into my car, lit a cigarette, got a pop somewhere and got lost for a while. When I got home, I told my husband and said he’d have to wear condoms from now on. He refused and turned on me. I left him after my diagnosis because he was an alcoholic and you can only take so much. When I told him I had HIV, he got worse. So I left.

When I was diagnosed, my parents and five siblings turned their cheeks the other way. I needed their help badly. I was living on $450 a month. I didn’t care if I lived or died… until Jack, my spouse, came along. If it hadn’t been for him, I’d be six feet under. I feel hurt by my family because they avoid me. My brother Michael is the only one I see; he comes to play bingo with me.

My mother told me, “Don’t go around telling people.” But I don’t want to keep it a secret. I’ve got nothing to hide or be ashamed about. People have put me down: “Sally Richard, she’s a whore.” I’ve had someone throw a hot cup of tea at me. I’ve been barred from a couple of bingos.

When I go to bingo, my mind is clear. I listen to the numbers called out and I concentrate on that. A couple months in a row, I won $500! I’m not tightfisted. I’ve got a heart. But in some ways, I’ve got a heart of stone because people have hurt me. I’ve been broken-hearted too many times, so I’ve become tough. I’ve been hurt from a child up. You can only take so much in your life. It’s important to stay away from people who upset you because it can lower your T-cell count.

I’ve never come across a woman in my category who got HIV from tainted blood. I wish I could sit down and talk with someone like me about how she feels, what she’s gone through and how long it took for her to accept it. What troubles did she go through? Did she have family to help her? At times, I wonder about all this.