2004-04-25 18:28:43 ET|
from The Toronto Star, Apr. 24, 2004:
Toronto's Joseph van Veen went from despair to hope in the 18 years since he contracted HIV. Now he's reaching out to AIDS sufferers.
After miles of cycling through northern Malawi, Joseph van Veen stopped at a roadside stall in a small farming village and bought a warm Coke. As he sat on a concrete stoop drinking, a crowd of about 20 people gathered around this curious stranger. One man finally asked what he was doing.
Van Veen, a 38-year-old Torontonian, explained that he was biking 6,000 kilometres through Africa to raise money for HIV/AIDS groups.
"Oh, HIV like me," said the man, a school teacher.
"Yes, and HIV like me, too," said van Veen.
For 18 years he's lived with HIV, van Veen told them. And they, like everyone else he's spoken to in Africa, marvelled and asked him his secret.
For half an hour in the red clay dirt of the roadside, they talked about AIDS and the costly antiretroviral drugs Africans desperately need. As van Veen climbed back on his bike to make camp by nightfall, he shook hands with his new friends. "The teacher said to me, `Travel well. We respect what you're doing.'"
That impromptu encounter provided a much-needed morale boost in a journey both physically and emotionally gruelling. "Every day, I get up and think, `I want to go home,'" says van Veen, who is averaging more than 100 kilometres a day. "Then, by the end of the day, there's some reward that made it worthwhile."
He is cycling with the Tour d'Afrique, an adventure expedition of 30 riders who began their trek in Cairo. Van Veen joined them at about their halfway point in Nairobi in mid-March. Currently in Maun, Botswana, he should reach Cape Town in mid-May.
Van Veen, a former Starbucks barista, took up physical fitness just four years ago. In September, he completed an Iron Man Triathlon to raise $12,000 for Casey House, the AIDS hospice.
Now he's aiming for $90,000 for the grassroots HIV/AIDS projects of the Canada Africa Partnership on AIDS (CAP AIDS) and the Nelson Mandela Children's Fund.
"This is my little part, to stand in solidarity with the HIV-positive people around the world," says van Veen, who spoke with the Star by phone this month from Malawi.
It's also his attempt to find some personal answers. Although today's treatments mean more HIV-infected people in the West are enjoying healthy lives, van Veen knows he is among the most fortunate.
"I've lost so many friends to AIDS. But I've lived 18 years HIV-positive without one opportunistic infection. Why am I still here?"
Back when van Veen was diagnosed with HIV, the virus that causes AIDS, it was a death sentence. A Burlington native, he had attended a theatre arts program at Mohawk College and then moved to Toronto, ready to launch himself into adult life.
He was only 20 when doctors gave him three to five years to live.
"We were watching his health, waiting for the other shoe to drop, so to speak," says his mother Arlene.
"We took lots of pictures during that time. We had lots of family gatherings. But he slowly pulled away. He was very sad all the time."
She remembers praying a lot. "I'd sit in the chapel for hours and cry," she says.
The five-year mark came and went. Then 10 years. Van Veen was taking more than $2,000-worth of the antiretroviral drugs a month. Healthy, he worked through the years as a travel agent, a theatre usher, a barista.
"Somewhere in the back of my mind I had thought, `If I live to be 35 it will be a miracle,'" he says. His 35th birthday came and went. HIV had become a chronic, manageable disease.
"I started looking in the mirror," van Veen says. "My quality of life was pathetic."
He'd oversleep every morning, take his pills, survive on caffeine and nicotine while at work, come home and order pizza, and then lie in bed watching television until he fell asleep.
On the Internet one night, he stumbled upon the Web site of the Body-for-Life Challenge, an exercise and nutrition program by fitness guru Bill Phillips. "It was a turning point. It woke me up," says van Veen, who changed his eating habits and started building muscle.
His life opened up in other ways.
In last spring's DQ, a drag queen revue to raise money for a home hospice, he did a monologue about living with HIV. He told the audience how, every year, he gave his godchild a guardian angel — there were angels made out of papier mâché, hand-carved wood, crystal.
As he approached age 35, he had angel wings tattooed between his shoulder blades.
`I could smell the eucalyptus. A bird's slightest chirp echoed through the trees. It was a spiritual experience'
"I thought I would die and I would be her last angel," he explained to the audience.
Every night on stage, he would drop his shirt to show the audience his angel wings — and every night they would cry. "I could hear the tears," van Veen says. "I realized there's a message here. I realized I have a voice."
To raise funds for Casey House, this fall he did the Iron Man Triathlon in Wisconsin — a four-kilometre swim, 180-kilometre bike ride, 42-kilometre run. He trained for nine months with his partner Bruce Edwards, an Iron Man participant the previous year.
His parents and Edwards waited for him at the race's end. "It was a moment I'll never forget," Arlene says. "I took a picture of Joe and his dad at the finish line, both crying. We were in awe of how he did it."
They were particularly in awe since he was no athlete as a kid. "He was sort of the opposite of a sports person," his mother says.
Knowing of his Iron Man feat, CAP AIDS founder Kevin Perkins suggested the African trip to van Veen. "He was pretty blown away," Edwards says. "But he never really hesitated."
There was not much time for training, but van Veen hoped he was still fit enough from the Iron Man. With approval from his doctor, van Veen took off for Africa, with two months' worth of antiretroviral medicines packed among his gear.
"I worry he could get sick from something over there," Edwards says, "but he had all the vaccinations and is taking all the right precautions."
With HIV, van Veen is no more likely than anyone else to get infected with malaria or another disease, HIV/AIDS doctors say, but should he become infected he might have a more severe case.
They say, with today's treatments, more patients like van Veen are living healthy, active lives. "I've met quite a few HIV-positive competitive athletes," says Chris Cavacuiti, an HIV primary care physician at St. Michael's Hospital. "It's a way they redefine themselves — to see themselves in a positive light, not as victims of a sickness."
In Africa, van Veen is visiting HIV/AIDS patients and groups along his way.
"I feared they'd see me as the white guy with a big bag of drugs," he says.
"But they haven't been resentful. Exactly the opposite. They seem to be inspired."
They ask the same questions: What drugs does he take? What's his secret? "It's gut-wrenching sometimes," he says. "I take drugs they probably can't get."
He's been particularly touched by the children.
Outside Nairobi, he visited a home for children whose parents were dying from AIDS. The conditions in the town were terrible. "There was a sea of corrugated tin roofs and shacks. Fires burned in the dirt. You could smell rotting garbage," he says. "They took pictures of me with the orphans. I felt so powerless."
The cycling has been more taxing than he expected, especially the parts on unpaved roads through the hot, dry savannah. At night, the Tour d'Afrique riders come together at a campsite, often pitching their tents in nearby bush.
"At times, I have to stop and cry," van Veen says.
"It's because of what I'm seeing and because of what I'm physically going through. Emotionally, I'm a little strained. I'm way out of my element here. The last time I camped, I was 12 years old."
He's seen baboons, monkeys, an impala and a dead cheetah, and ridden through lush green hills and beautiful mountains.
Cycling one morning in the mountains, he came upon a eucalyptus forest shrouded in clouds and eerie mist. "I walked into the forest with the trees towering over me. I could smell the eucalyptus. A bird's slightest chirp echoed through the trees. It was a spiritual experience."
More than 2,000 kilometres still lie ahead of him.
"I have no doubt he'll finish," says his mother. "There's nothing he can't do. I think that's his motto."
To find out more about van Veen's journey, visit http://www.rideforhope.capaids.org. Van Veen is hoping to raise $15 per kilometre of his trip.
Donations can be made online or by mail to CAP AIDS, 429 Danforth Ave., Suite 449, Toronto M4K 1P1 or by calling 416-466-4604.
CAP AIDS is planning a Welcome Home party for van Veen on June 5 and a bike-a-thon on June 19.
For more information, call the above number or e-mail: firstname.lastname@example.org
Photo and story here.