The Positive Side

Spring/Summer 2004 

Keep on Truckin’

Four survivors on their long, strange trips with HIV.

Interviews by Diane Peters

FRANÇOISE GROTHÉ, 59

Montreal, Quebec
Retired teacher and social worker
Diagnosis: 1990 (likely infected around 1985)
CD4 count: 700
Viral load: undetectable

I lived for 10 years in the Caribbean, where I got infected. For a month after my diagnosis, I waited to die. I paid for my funeral, even got a little urn to be buried in. When that didn’t happen, I said, “To hell with it. I’m living and that’s it.”

For about 14 years I didn’t take any HIV drugs. Each day I walked 3 kilometres, swam in the ocean, slept eight to 10 hours, and ate fresh fish and coconuts — a perfect life as far as my health was concerned.

I came back to Montreal every year to see my daughter and my doctor. In 1998 my doctor said, “Your CD4 count is 20, you have to come back.” So I said goodbye to my friends in the Caribbean, many of whom had AIDS. I had to look at them, knowing damn well they were going to die and I possibly wasn’t.

When I came back to Canada, my doctor signed my disability papers. Under prognosis was the word death. That’s when it hit me.

Soon after, I started antiretrovirals and got really sick. When you’re not feeling sick and you start meds, you ask yourself, “Why the hell am I doing this?” I was taking ddI [Videx] and ended up almost getting pancreatitis. When they finally took me off the meds, I was throwing up 24 hours a day. Eight months later, they put me on something else, which lasted four months. I ended up in the hospital with acute anemia. Then they put me what I’m taking now — 3TC [Epivir], nevirapine [Viramune] and abacavir [Ziagen]. It’s almost been two years and it’s going really well. I have lipodystrophy and cramps in my feet and all kinds of little things, but it’s nothing big. Last year I had a bout with osteoporosis — there was a period of about six months where you’d just look at me and I’d break a bone — but that’s better now.

I’m lucky that I can do the things I love, like going to the library and the movies. I live with my daughter and her half sister. My daughter is bubbly and crazier than I am, but she’s also a big worrier, which has forced me to not feel sorry for myself. If it’s 5 p.m. and I’ve had a lousy day, I don’t want to depress the girls when they get home. When you try to be in a good humour for someone else, you realize you are in a good humour. My daughter was diagnosed last year with a rare form of rheumatoid arthritis. The big joke between us now is: “You’re supposed to take care of me and I’m taking care of you.” I’ve become the caregiver again.

I do a lot of volunteer AIDS work. If I have this possibility of living, I have to do something with it. We lost a lot of activists last year in Canada. Many of them were giving lectures two to three days before they died. That motivates me. It hurts your feelings to see them die and, like it or not, you know you’ve got the same thing and your turn is going to come.

One thing that keeps me going is a very controlled and well-channeled anger. I’m still angry, and I’m going to be angry until I die. I’m angry against this illness — not that I have it, but that it exists and it’s so stupid and there’s no reason for it.

In 2005, it’s going to be 20 years that I’ve had this disease. I’d say at least 50 percent, if not more, of the reason for my survival is attitude. I’ve always been in love with life.

SURVIVAL TIPS

Eat well, sleep well and learn — when it comes to HIV, you are your own doctor. You have to be able to analyze how you feel. Also, forget about it. Put it aside in a little box somewhere and keep on living your life as best you can. Life has given you this, it’s a blow, but climb over it and move on to something else.

 

DEVAN NAMBIAR, 43

Toronto, Ontario
Treatment information service representative, CATIE
Diagnosis: 1988
CD4 count: 140
Viral load: below 50

I don’t consider myself a victim. I didn’t know that the guy I was dating was positive. I was volunteering with the AIDS Committee of Toronto, I had all the knowledge… but I chose not to act on it. At the time, we didn’t know a lot about transmission. We thought if we did it a certain way, it would be fine. I didn’t have sex for two years after testing positive, I was so traumatized. I thought maybe it would go away if I’m celibate.

I traveled to India, where my parents come from, and started to look at who I was. I picked up books on spiritualism, Hinduism and Indian traditional medicine. I ended my trip in Malaysia, where my family lives. It was a very introspective, personal journey.

When I returned to Toronto in June 1989, I went for a second HIV test just to make sure. It came back positive. I continued to learn more about the immune system and mind-body modalities. My focus was on nutrition, vitamin therapy, yoga, meditation and exercise. My goal was to work out, eat right, sleep right.

In 1991, I got into an amazing relationship with an HIV positive man. The next year we went to Asia. When we returned he got really sick. I had no experience with somebody who’s dying, especially someone I was attached to. There’s nothing you can do except be there. You’re completely, utterly powerless. It’s the worst lesson you can learn in life. He passed away in January 1993.

In 1995, I started my work in AIDS, though part of me wasn’t resolved about my boyfriend’s death and my own mortality. I was eating and sleeping right, but I wasn’t thinking very positive. In 1996, I had 50 CD4 cells and I became really ill with PCP. It was the most excruciating and humbling experience. I had to sit up while sleeping because I couldn’t breathe and there was the most horrible smell coming from my breath, from my lungs. I called my doctor, who told me to get to ER right away. The hospital staff said: “What were you waiting for? If you came one day later, you’d be dead.” I joked: “Damn, I should have waited.”

Two months later my doctor asked if I was ready to start meds. I went on indinavir [Crixivan], 3TC [Epivir] and AZT [Retrovir]. The combination gave me hyper-pigmentation on my skin. After nine months, I went on a three-month drug holiday — my first of many. I may have been the first person to ever take a drug holiday! It was a big no-no at the time.

After that, I went on efavirenz [Sustiva], ddI [Videx] and d4T [Zerit] and ended up with peripheral neuropathy. My nerve endings were killing me: I couldn’t walk or bike to work anymore. So I did some research and decided to drop the “d” drugs. I kept the Sustiva and went back to AZT and 3TC. I boosted my B12 injections and did acupuncture and foot massage, and my feet got better. I stayed on that regimen until 2001, when I took a prolonged treatment break.

I’m on five meds now, the most I’ve taken. I’m feeling fine. My lifestyle is very disciplined: I go to the gym at 6 a.m. four days a week, I eat well and take many supplements. I have a boyfriend who’s negative and cool with my status. I’ve finished writing a book and I initiated a drug-recycling program in South India.

I’m no longer looking for answers in my life. I think I’ve found what I’m looking for. I know I have a place in the universe and HIV is one of the pieces in my life, not all of it. I’m finally at peace with HIV. It’s doing its thing, I’m doing my thing — we can live together.

SURVIVAL TIPS

Listen to your heart. Live and enjoy life. Do the research, learn what the disease is about. Combine the body and the mind. People doing just one or the other are missing a lot in terms of the full picture.

 

JAMES OAKES, 48

Vancouver, British Columbia
Communications and marketing, Langara College
Diagnosis: 1984
CD4 count: 340
Viral load: 16,500

I don’t really consider that I have a disease. I know I’m HIV positive, but I’ve never had symptoms or taken HIV meds, so it’s something of an abstraction for me. When I was diagnosed, I didn’t buy into the death sentence, even though the climate of the mid-’80s was a time of real terror.

Initially, I remember feeling ambivalent about life and death. But at the same time, I had a strong will to live and the thought of dying was inconceivable. I’d been doing a lot of psychotherapy. At the time of my diagnosis, I was doing bioenergic therapy, which allows you to go really deep into all the fears and vocalize it and feel it in the body. I was confronting all the emotional issues on my plate, so when I was diagnosed I was torn between living and dying. This ambivalence wracked me for quite a while.

Therapy allowed me to go through the fear. I realized that you could literally be scared to death. People who tested positive were buying into the death sentence. Symptoms would manifest themselves, leading into a downward spiral. At a certain point, the will to live is lost.

It took me a long time to realize this; it was a very long journey. On the way home from my doctor’s office, the road bisected a cemetery, and I felt like I was riding through the valley of death. Although I was essentially an atheist, I found solace in the Catholic presence in Quebec. I found myself going into churches, which was radical for me. The image of Jesus on the cross touched me.

At the time, I was suffering from digestive problems. I thought I was dying of AIDS. Eventually I learned that it was irritable bowel syndrome, a very debilitating condition. I had to learn to separate the two illnesses.

About two years after my HIV diagnosis, things fell apart. I had a lot of professional and personal stress. My relationship came to a bad end, mostly because of my girlfriend’s fears around AIDS. I asked my psychotherapist for a letter requesting a leave from my job and flew out to the West coast, where I’m from. I took refuge with a friend who lived in a big house near Squamish. It was a safe place for me. I worked in the overgrown fields of his house and I’d take his dogs up the mountain-logging roads for hours. I felt my salvation lay in physical work, to defy death through my physical strength. I decided to quit my job and give up the life I’d built in Quebec.

I pretty much shelved my career, spending my days in the garden and going swimming. But eventually I realized: “I’m not dying, so what am I going to do?” I began taking freelance journalism assignments and moved to Vancouver. For the past decade I’ve just carried on, with the help of antidepressants.

About seven years ago, some friends on a gay hockey team recruited me. I was 42 and initially said, “No, I’m too old.” It’s turned out to be one of the best things I’ve done. There are other positive men on the team. One longtime PHA has been a real role model to me. I look at the game as an analogy for life: A lot of times you’re knocked down on your ass, but you get up right away, you don’t have time to think. It’s very “in the moment.”

I realized at one point that I couldn’t live like a purist. I smoke pot regularly and enjoy life with gusto — good food, good wine — but I have my own kind of balance with it. There was a time when I forced myself to go to the pool and swim lengths, but now I just do things that are fun, like rollerblading. I’m thinking more about the future and how to find challenging, rewarding work. AIDS is in the background.

Death is sitting on everyone’s shoulder. I’m not different from anyone else, with or without HIV. How long am I going to live and what’s the future going to look like? I’m not worried about it. The length of life isn’t all that important — it’s what the quality of that life is like that counts.

SURVIVAL TIPS

Surviving is about following your intuition and living life with enthusiasm. Find your passions. It’s very important to have support in your life. Find a good counsellor or therapist with whom you can go into the darkest, scariest part of it all and confront your fears.

Photo: James Oakes: Scott Dixon