The Positive Side

Fall/Winter 2003 

The Lipo Files: Every Picture Tells a Story

Jake Peters’ journey through the looking glass.

I FIRST NOTICED LIPODYSTROPHY in my face after I came out of the hospital in 1996, 12 years after I seroconverted. I began to fear it when I understood that my sunken face, exposed ribs, swollen belly and bony arms and legs marked me as a Person With AIDS.

I spent more than a year in that hospital. When I left, I was in a wheelchair and I looked like I was starving. At 66 kilograms I was emaciated, fragile and unable to walk. My muscles had atrophied.

The doctor had sent me home with a brown paper bag of capsules of saquinavir (Invirase), which I started taking along with a plethora of other medications. For four years I’d taken many toxic drugs with no apparent benefit. I didn’t know that the saquinavir would save my life.

My occupational therapist suggested that I attend a program called “Positive Living” at the YMCA to try to build up my strength. I had a difficult time looking at myself in the studio’s full-length mirror. My ego was shattered. I had a gigantic gut, spindly legs and arms and a huge hump on my back. (OK, it wasn’t huge, but I had a hump and it was growing.) My hair was falling out.

I looked horrible.

I had a hard time accepting my appearance, seeing myself as a person whose illness was so visible on my face and body. I never wanted to take my clothes off.

In one of my Stretch and Strength classes at the Y, a woman came up to me and said, “Take it easy! Your veins are bulging! You’re overexerting yourself.”

We hadn’t started the class.

Veins were bulging out of my skinny limbs, like ropes wrapped around my arms, legs and feet. They still do. It’s my normal appearance.

I believe that lipodystrophy has a major impact on how people respond to me. I think that people who recognize the syndrome in my face choose to not associate with me, whereas if my face were chubbier, it would be easier to make friends.

I used to feel uncomfortable eating because my gut would distend even further. My waistline would expand from the pressure. Everything was forced outwards. Tying my shoes was exhausting because I could hardly bend over. I found it difficult to breathe. I felt like a big pimple that needed squeezing. Having too much fat in some places and not enough in others was a bit like geopolitics—this great big ballooning gut and hollowed out cheeks (at both ends), sunken eyes, spindly arms and legs.

I have closets full of clothes. My wardrobe no longer fit me when my belly swelled 14 inches and I lost my ass. I’m glad I hung on to my old clothes because I managed to get my figure back. It’s time to part with the garments of ghastly girth.

 

ONCE I FOUND THE INSPIRATION — after training at the Y, feeling a bit better about my body and developing a sense of hope — I began to search for something more than sit-ups and exercises I wasn’t finding any joy in. Aerobics was wearying, and I began to find basic Stretch and Strength classes rather predictable and unchallenging. I also had little love for weight training with those big machines. It all seemed like work. I yearned for something I could do at home or on the road, that didn’t require a membership card or special equipment.

Yoga gave me that. It simply required that I find a teacher to inspire me. And I did — my teacher has been guiding me for five years. I knew from the first class that doors were opening for me.

Yoga has helped me in many ways. It’s taught me to become self-disciplined and learn to feel my body from within. With yoga I’ve managed to massage and coax away some of the obvious symptoms of lipodystrophy.

I’ve gradually adapted my lifestyle to accommodate living with the virus and the side effects that go hand in hand with my meds. I quit smoking in 1988 when I saw a friend struggling with PCP in an intensive care unit. I cut out drinking. I drive a bicycle. I’ve changed my diet at the urging of my yoga teacher and dietitians. Avoiding red meats, animal and trans fats, sugar, salt and junk food has lowered my cholesterol and reduced hypertension. I eat high fibre foods: whole grains, nuts, fruits, vegetables, some fish, and only dairy products that are 1% fat or less. Diet and exercise control my diabetes. I feel lighter, stronger and more flexible. My digestive system is happier; I rarely experience diarrhea or constipation, which used to plague me. My diet may not seem “normal” to most people, but at my age, 53, I need to think as much about my heart as my HAART.

I love to push my limits and when I’m doing yoga I forget all the things that trouble me — I’m only aware of myself at that moment. When I practice, there’s a dialogue between my body and my brain. I find incredible satisfaction in bodybuilding through mental control.

Jake Peters is a Toronto photographer who began to document the AIDS pandemic in the late 1980s. He was encouraged to begin this work by his late cousin Dr. Andrew Zysman.

Photo: Jacob Peters