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.
