Feature Story Wednesday, December 4, 2013
Fear and Loathing in Chilliwack
AIDS candlelight vigil highlights need for greater awareness
Claudia Dalzell (L to R), Colleen and Darren Crook burn candles in memory of those who lost their lives to AIDS Sunday at Salish Park.
hree figures huddled together under an awning at the downtown library Sunday, bracing themselves against a stormy December night.
In much the same way, someone living with Human Immunodeficiency Virus (HIV) faces a biological storm that hammers relentlessly at their bodies until they have full-blown AIDS.
It was World AIDS Day and a local non-profit group called Chilliwack Positive Living (CPL) held a candlelight vigil and prayers at Salish Park to mark the occasion.
Colleen Crook, her husband Darren, and supporter Claudia Dalzell, lit candles for the lives touched by the tragedy of AIDS.
Crook cupped her small hands around her candle, guarding the fragile flame from the wind.
"I'm HIV positive," she says in a soft and surprisingly young voice.
She isn't alone with her malady. At last count, there were 275 others living with HIV in Chilliwack. Despite those numbers, the help that's available to them is barely adequate.
So Crook and her husband started the Gypsy Project Society and refocused efforts on Chilliwack to help HIV positive people.
"I just found that there were more people in Chilliwack that needed something for HIV and AIDS," explains Crook. "So we changed our name from the Gypsy Project Society to Chilliwack Positive Living in 2012."
CPL has been steadily working to raise awareness and dispel stigmas about this life-threatening illness. As evidenced by the number of supporters who showed up at the vigil, there is still more work that needs to be done.
Crook was diagnosed with HIV in 2003. She says she became infected after a blood transfusion at Chilliwack General Hospital with what was deemed a "bad batch".
"It was either me dying or getting blood," she explains. "I passed out and they gave me the blood, and 6 months later I was diagnosed with HIV."
After the transfusion, Crook moved to Estevan, Saskatewan to start anew.
Once there, she began losing her appetite and getting sick for no reason. But it wasn't until she lost 54 pounds in less than a month that she knew something was wrong.
"I went into the hospital in Estevan, got tested and they phoned me on December 23rd and told me I had HIV," she said.
The Crooks moved back to Chilliwack in 2006 and since that diagnosis a decade ago, she has done her best to remain upbeat taking each day as it comes.
"It was kind of hard when I found out, but I've got a positive attitude and that's what people have to have—a positive attitude," says Crook.
She described some of the success she's had with the current retroviral drugs like Reyataz.
"Normally, you're supposed to take two of them, but I can't take the second one because it's too much for my system, so I take one and my counts are excellent," she said.
Crook smokes marijuana which she says helps as a pain reliever and appetite enhancer.
"I started smoking because I've got HIV neuropathy as well and muscle wasting and then I got hit by a car in August on my scooter which was a little bit harder on me with a lot of soft tissue damage in my hips, neck and back," she says.
Health Canada has recently introduced changes to who grows pot and where.
When asked how she accesses pot, Crooks says she had a designated grower, but next year people will have to go to producers or dispensaries.
"If you buy it through health Canada, it's $130.00 for 30 grams and that's their ounce," she said.
Dalzell has had her share of hard knocks too. She lost one son to AIDS nine years ago and another son was diagnosed with Hepatitis C—until according to her—he was cured by a shot in the liver from a clinic in Vancouver.
Dalzell also knows about the stigma around AIDS.
"I belong to a church, and it's so bad with the church people that they think you're going to get it just by hugging somebody," she said.
She's very concerned with educating the community about AIDS and HIV.
"I want everybody to get a better understanding, and once you start talking, then they start talking to other people," she said.
According to Crook, resources are slim for people living with AIDS in this city and that Chilliwack Community Services "actually help a bit" by connecting people with services.
The Health Contact Centre works with Pacific Community Resources Services to offer a needle exchange harm reduction program for drug addicts.
"Basically, we're here to help anybody and if they need any information. I have packages together," she said holding up a thick booklet about managing health and nutrition.
"Information that they'll need to know while they're going through HIV and life with it," she said adding "There are nourishment books just so they know what they should and shouldn't eat as well as medications, like herbal stuff that you can take."
The Crooks get help from a Winnipeg-based group called KATIE who sends her information about infectious diseases to give out in the packages.
They also assist with paperwork, like applications for a federal marijuana exemptions and dealing with various branches of government.
The couple keeps busy doing advocacy work in the Fraser Valley.
"We can help them with things like when it comes to legal papers, my husband is very good at doing legal documents, appeals with Social Services," said Crook.
So far there's no peer support for HIV positive people in Chilliwack, but Crook hopes there will be soon—if they can find office space.
Because she and her husband, who suffers from a chronic foot and ankle condition, live on disability, they can't afford much.
They have connections with the Oak Tree, a Vancouver clinic for women with HIV, who may be able to offer some assistance.
"One of the doctors there is on an advisory board for one of the HIV and AIDS agencies in Vancouver and they're looking at helping us get an office," she said.
The Crooks operate a Facebook page called Chilliwack Positive Living where she posts updates with the latest information from AIDS Vancouver.
Some of those living with HIV in Chilliwack are street people, but mostly the numbers represent a cross-section of the community.
"Not everybody that are street people or homeless have it," said Crook. "There's a lot of family members that have it.
Crook says its difficult to get past the stigma of being HIV positive and there is more prejudice than there should be. She's had long-time friends turn their back on her because she told them she had the disease.
Some HIV positive people are even afraid to tell their families. But with Crook it was different.
"As soon as I found out, I let the family know about it because it doesn't help to lie," she says. "If it's the ones you love who you're lying to then it doesn't work."
After 8 years of marriage, Crook's husband remains HIV negative.
"It's what I would call a blessing," he said.
Then they bowed their heads in prayer.
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