July #114 : Altared State - by Shari Margolese

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July 2005

Altared State

by Shari Margolese

When I walk down the aisle this summer, will I look like I have HIV?

Love is in the air: I’m about to leave for the Caribbean to marry my partner of six years. We’ve planned an intimate seaside ceremony atop the black coral cliffs of Negril, Jamaica, near his parents’ home. My fiancé and I are 42, but it’s his first marriage, whereas I’m on my—call Jerry Springer—third. Yet I feel like a blushing first-timer. I daydream about the sun setting as we exchange the vows that will unite us and my 12-year-old son as a family. I have planned every detail: white roses and purple orchids for the bouquets. White-and-purple rose petals scattered on the aisle. Handmade candles flickering among orchid petals in the pool. After a traditional Jamaican wedding feast, we’ll reggae and rock. And, ah, yes, my dress: it’s strapless, mermaid-style…the dress! Wake up, Shari!

Reality scatters my fantasy. Although I’ve had HIV for 13 years, I’ve been spared what living with this disease can do to your body—until I dropped 20 pounds in just a few weeks during a bout with the flu (so much for the flu shot). My legs and arms thinned, my butt and breasts all but vanished, while my belly seemed to swell. It turned out that underneath my middle-age plumpness, I had the typical signs of lipodystrophy.

Now that my shirts are baggy and my pants sag, my skateboarding son thinks I look “stylin’.” As much as I appreciate the support, what will my 30 wedding guests say about my weight change? Will they ask about my health? Will I look ill in my photo albums? Am I being shallow and vain?

I have never obsessed over my looks. I’ve long since lost the beauty-queen bod I strutted in the 1982 Miss Canada pageant. Indeed, my extra bulk has served as an “insurance policy” to be cashed in if I got sick. Now, my insurance has expired, and when I look in the mirror, I no longer feel healthy, curved, sexy—but like a pregnant Kate Moss. My man, who dreams of a princess bride, has noticed. I was making cookies when he grabbed my butt and asked “What happened to the junk in the trunk?” I hoped it was a compliment. Then he added, “I hope those cookies are for you—you could use a few pounds.” I was mortified. How would he react if I got PCP or something worse? Sometimes I feel selfish asking him to commit to a future that could include a sickly looking wife instead of the slightly rounded goddess he signed up for. Prewedding festivities have also put me under the microscope. His cousins threw me a lingerie shower. After a few glasses of wine, they persuaded me to model the gifts. Everyone noticed I’d lost weight, but, to my shock, they all thought I looked fabulous. “What’s your secret?” they demanded. I’d forgotten that weight loss was an achievement in the HIV negative world. His family doesn’t know my status, so I replied, “Ah, you know, drink lots of water, walk the dog. No real secret.” I had a secret, all right—but one I wasn’t willing to share.

My doc helped put things in perspective. Although concerned, she explained that anyone can lose 20 pounds with a bad case of the flu. She added that since I switched to a combo of Kaletra and Combivir last summer, my CD4s have bounced from 400 to 780 and my viral load has gone from over 100,000 to undetectable.

Assured that I wasn’t about to die anytime soon, I went to pick up my dress: A strapless, mermaid-style “hoochie mama” gown in white net reminiscent of Marilyn Monroe’s in Diamonds Are a Girl’s Best Friend. The salon owner helped me find the right underwear to cinch my waist and push up my breasts and added a bustle to create a butt! Even I have to admit I looked amazing. I’m still anxious about a possible future of sunken cheeks (facial and otherwise) and scrawny arms, but at least I won’t have to face it alone. I am marrying the love of my life. I’ll be his princess bride.

Shari Margolese was recently awarded the Golden Jubilee Medal of Queen Elizabeth II for her AIDS activism.



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