Monday, May 6, 2013

Kelowna May 4 and 5

Kelowna is a beautiful town on Lake Okanagan. There are hundreds of shops, restaurants, gas stations and other services. The waterfront is dotted with parks, boats, docks, trees, flower gardens, bikeways and walkways. A pair of ospreys, in the evening light, greet any mildly adventuresome tourist. The streets are spotlessly clean. To the outside observer it’s the perfect summer play area. It is almost too perfect for problems like HIV. 


Local AIDS Service Organizations seems to be in a state of flux.  I’d asked a friend to see about organizing an event in town and she was not able to connect with anyone. Our time was a little freer than we’d first imagined. Local friends told us about how hard it was for people to disclose in a town that is both big and small, where everyone knows who the other is, and there is nowhere to hide.



In Kelowna, we found women isolated and fearing the social repercussions of living openly positive. They envied Victoria’s network of positive women, who meet regularly. Solid self-esteem is one of the essential ingredients in maintaining my health, yet many other women live in communities that make them feel less worthy than others. We all deserve respect - especially women who manage to live with the daily challenges related to HIV. 

One day it would be wonderful to write a book documenting the treatment of positive women by their families, their friends, their colleagues and the medical community. 

Below is a picture of Cathy - at the request of my sister - who thought there were altogether too many pictures without her.

Sunday, May 5, 2013

Pictures from Hope




 Along the Road to Hope

Three Days on the Road and we still have half a tank of gas

We should be able to make it to St. Andrew’s with only a few fills at this rate. OK, so we have to drive a little longer than an hour some days! We’ve been moving slowly - a great way to start this long trip. Both Cathy and I were way too busy before we left Victoria.



From Abbotsford, we drove along the freeway towards Hope. After 20 minutes we cruised into Chilliwack to visit a family friend. The tourist information centre has a great flag shop where we bought small flags for each province en route, and proudly hung our BC flag on the mast that holds the sculpture securely in the truck. Within an hour the flag was looking bad, but that was OK because 48 hours later it was gone completely with no sign of the electric tape that was used to secure it in place. So far that's the only casualty of the trip.

We arrived in Hope a day earlier than our initial schedule (but as posted on this blog), stopped at our host and hostess’s home, picked up Virginia, and headed to the Blue Moose.  As we set up, one of our audience reported that he’d heard about the trip on CBC radio!  Word had already gotten out that a couple of crazy women are driving a seven foot cocktail glass across the country.
Opening the back doors of the truck allowed us not only to pull out our oversize banner, but also to show off the packed sculpture. We were greeted by curiosity - the greatest learning tool. We spent a pleasant afternoon in the sun, sipping coffee and talking to those passing by. 

We had a remarkable conversation with one woman whose life changed when she got a cancer diagnosis. She spoke of her two-year search for alternatives to ‘the knife’. As she spoke her eyes sparkled with the realization that she was taking care of her body and learning what made it function best.  It has been two years since her diagnosis and she’s completely avoided pharmaceuticals. We talked about the stranglehold the industry has on research, people practicing medicine and our ability to better understand the importance of organic healing agents - herbs - weeds as a healer who stopped by referred to them.  The conversation was initiated by the sculpture.

In the evening, after an intimate dinner party, we watched the movie - Positive Women Exposing Injustice. We were all outraged that so many people are incarcerated in Canada - the crime often labeled 'aggrevated sexual assault'. This situation creates more stigma around HIV. We watched the documentary in disbelief, as a Montreal woman told us her story. She went to the police after he hid in her apartment, attacked her, threw her from a second floor mezzanine and broke her son’s arm when the son tried to protect her. Her 'ex' retaliated with a claim that she did not disclose her HIV status to him. The courts appeared to see her as a less reliable witness - due to her HIV infection? It will take time to ease the stigma of HIV under these conditions. And people won't want to be tested.

No one in Hope came up and spoke openly about their HIV status.  Is it surprising? 

Friday, May 3, 2013

May 2 - That was Abbottsford :(


It's early. I’m reflecting back on yesterday, and our time in Abbotsford at the All-Candidates Meeting. We talked with several locals including people living with HIV. Thinking about the day makes me sad. I want to add to the message my sculpture takes across the country.

Over the past five months, as I built the cocktail glass, I talked openly about my infection with HIV to all the friends who came to help. We discussed messages the sculpture could deliver. Last evening, I gave people at the meeting a one liner to start our conversations - describing what was this creation was about. 

The huge vinyl banner hanging in the foyer of City Hall was about prevention being by far the better choice than treatment.  Surely once we got talking people would realize that there were many more messages in the glass than that. After an evening of discussing the locally sensitive topic of AIDS, I am so glad that I live in a liberal - that’s little ‘l’ liberal - community, rather than in Abbotsford.  It was so hard to receive the rigid responses that the conversation invoked. I heard horror stories from people who are not willing to disclose their identity, for very good reasons.

The evening was long - after listening to two and a half hours of mostly one-minute sound bites at the all-candidates meeting - I waited in the lobby to engage people in dialogue. The first man I approached was young, clean cut and wore a soft smile.

“Would you like to read more about this Cross Canada Cocktail Tour?” I asked, handing him a flyer. “I created this giant pill bottle sculpture to help people understand that prevention is essential, and much less costly than treatment (both in dollars and on the mental and physical bodies of those infected).”

“This disease is easily preventable by abstinence until marriage,” he explained to me, “and then taking only one partner”. Great theory I thought. What about reality?

The conversation somehow continued, with me asking about those who were infected as babies, through rape or blood-born infection. He agreed these were special cases and explained to me that the medication was unnecessary and ‘those things’ can be controlled by diet. I think he meant the virus. Hadn’t I read about people who had been cured through diet? I asked for the references. I really would like to read about these people and contact them. He listed a few. I wrote down ‘H.Acres.com, the China Project, Forks Over Knives, Fat Sick, and Nearly Dead.’ I will look for some of these when we are in a library, but know my own health is a result of diet, self-care, complementary therapies and medication. When he started lumping cancer and HIV together, I knew that the evening would be a bigger challenge than I thought.

Thank goodness for another woman who came over and told me about the Hospice where she had worked and the isolation of those dying from AIDS-related illnesses.  She was interested to hear that there were special Hospices for HIV in Toronto and in Seattle. I thought of the friends that I have known that died in Hospice and was suddenly more concerned than ever for those in this part of Canada.

In the next 45 minutes, Cathy and I met most of the candidates and the Mayor. We heard about struggles between jurisdictions to get harm reduction established here - the lack of treatment facilities for those wishing help to overcome addictions - about youth who fall between the cracks - about a man being denied a transfusion when his hemoglobin levels were unacceptably low - about dental offices that wrapped everything in disposable plastic before allowing a positive person to sit in the dental chair, and worse, the person needing dental work accepting that treatment because this was the only dentist that would see them and accept their disability coverage. Canada, I shed a tear for you and your dream of Universal Health Care.

I am so glad that we stopped here. HIV support does not seem to exist in the medical system - there are too few doctors, emergency rooms refuse appropriate treatment for people who are HIV positive, and, hospitals, even though they are only an hour away from Vancouver and the Centre for Excellence in HIV care, do not stock the medications that people living with HIV need to take daily. I was reminded that here hospital stays, if you are treated, can lead to treatment interruptions. And all of this is much worse if you happen to be incarcerated.

For the second day in a row I heard about the proposed exportation of the young man from Zimbabwe, who was jailed for having unprotected sex with several women. His recollection was that after he’d had an HIV test, he was called to come talk to the clinic about his results. When he asked, over the phone, if there was a problem, he was told that everything was fine. He just needed to come for post-test counseling”.  He assumed that everything was fine and never went back to the clinic.

It doesn’t really matter what the truth is about this case.  In my heart, it’s wrong to knowingly infect someone. It is also wrong to put the blame on one person in non-violent situations. When there are two consenting adults, two people should be making decisions.  I know that this case, and the 129 others in Canada, are much more complicated. For example, there is a power differential in most relationships.  One partner is usually stronger and more in control of situations - whether it be preparing dinner, choosing a movie, or determining whether or not protection is used. How does this play out in our bedrooms?

Abbotsford left us sad. We were treated wonderfully by our hosts, who believe in the Cross Canada Cocktail Tour, and encouraged us to continue the dialogue.

Tonight we will arrive in Hope, where I know that there must be some very frightened people living with HIV. Perhaps the rolling cocktail glass will let them know that they are not entirely alone.

I am reminded of the conversations from Africa that were shared on Day One - about people dying within six months of diagnosis, because no one would talk to them, no one would share a meal with them, no one would sing or pray with them. They died of isolation. And I think about the statistic from the Kruger Report. ‘Two thirds of the people living in this part of British Columbia, who die of AIDS related illnesses, die without ever accessing care or treatment.’ Is it about lack of medical services? Misdiagnosis of the disease by doctors who believe that people don’t have sex until they are married and then only have it only with their partner? Do people lack the funds needed to get them to clinics and hospitals? Is it about fear of approaching a medical emergency room that discriminates against people?  Or is it that those addicted to drugs or alcohol, see no service for them in this region? I can’t answer the question. I can just hang my head and cry for a country that has enough and does not find ways to prevent deaths.

Cross Canada Cocktail Tour - On Schedule

People have been asking so let me make this a post of our Travel Schedule.

May 1            Depart Victoria for Surrey/White Rock and the rest of B.C.
May 2            Abbotsford
May 3            Hope
May 4            Kelowna
May 6            Nelson
May 7, 8        Prince George
May 9 - 11     Alberta (Edmonton, Calgary, Leithbridge)
May 12, 13     Saskatchewan
May 14, 15     Manitoba
May 16 - 23    Ontario (S. Ontario - May 19, 20) (Ottawa - May 23)
May 24 - 26    Quebec (Montreal - May 24)
May 27            New Brunswick
May 28            PEI - Charrlotown
May 29, 30      Nova Scotia
May 31            St Andrews, New Brunswick

The next post will be Abbotsford.

Thursday, May 2, 2013

Sharing the Sculpture - Day One - Afro-Canadian Network

Here we are - on the other side of the water - really on the way across the country.

We can share the sculpture - people can see it nicely wrapped inside the truck. No amount of shrink wrap seemed to make it small enough to easily load and unload, so it will stay protected for the long haul.  The little spike out the top of the truck allows it to be stabilized for road motion - but takes about thirty minutes to screw down into the dwarfed sculpture.

Fortunately, the long stem is separate and sturdy enough to take out and share conversation around HIV medications. And wow, did it get the conversation rolling last night! We have some great videos to share down the road.

Below, Patience and Peggy share a moment, as Peggy pulls out the almost life-sized poster of the sculpture.
Putting up the poster in a house was a problem, as it takes a large wall.  We selected the window which let light shine through it, but still allowed people to appreciate the size of the erected sculpture. And we used our new Stanley thermos as a hammer - worked really well. Thanks to our construction crew for knowing we would need it.  Haven't backed over it yet, but goodness knows we just might. And NO - I would never actually hit Patience with it - we were just hamming it up.

I also made 35 prints, 8 x 11 images of the process of creating the sculpture and the steps involved in erecting it. I shared these with members of the Afro-Canadian Network last night after a delicious dinner.
We had such a good time last night - there were intimate stories, many from Africa, as all the people in the group that gathered last night, have come to Canada recently.  We talked about stress, about the psychological impact of an HIV diagnosis, about the side-effects of medications and family issues related to HIV. Then we danced and prayed. We'll share some of those moments when we learn how to upload a video.

There was so much laughter as we looked at pictures of some of the members performing at a gathering in Vancouver. We also shared laughs when we heard about poor Jean who was asked to go to St Paul's Hospital Pharmacy and collect a bag of medication for Peggy. Neither Cathy nor Peggy were inclined to drive the cocktail glass into Vancouver's rush-hour traffic. Blessings fell upon us when it seemed there was a dear friend who could pick them up and deliver them to Surrey.  She was ill, so called Patience, asking if perhaps she knew someone who could do it. Since Patience had an appointment in the downtown area, she offered to do the pick-up herself. When that appointment was canceled, the job fell to Jean. He received a large brown bag - but it was too light. "Hey, these pill  bottles are empty!" he discovered before he left the pharmacy. "That's just what Peggy wants." he was told. "Strange lady" he thought. I likely confirmed his suspicions.

Thanks so much for the warm welcome we received from the Afro-Canadian Network. You set the stage for an amazing journey.

Day One Cross Canada Tour


Yesterday was the fullest day I could have imagined.

There were taxes to sign off on. Thanks Paula for making sure I get a refund. I know - you said it was just that I paid too much. 

The box for the truck was fitted with side compartments and the sculpture disassembled carefully, wrapped and lifted into its home for the 30 days. It may seem like a simple thing - loading a 7 ft sculpture into a pickup truck, but I lived in constant fear that the wind would blow it over, it would rain, or that someone would drop or knock it. It is very fragile. We were blessed with the most beautiful day to pack the sculpture - sunshine and no wind! 

I also had a series of pictures to pick up. They tell the story of building the sculpture. While I was there I thought I’d better get my photo taken for my Indian visa.

And then the giant print was ready too! I have a ¾ life-sized image of the cocktail glass and I for display.  I’m NOT taking the sculpture out of the box until St. Andrews, New Brunswick!

At the end of the day, after packing my sleeping bag, my hiking poles, my suitcase and all the tools and glue I might need for the sculpture into the truck, I headed out with my house-sitter for dinner at the pub. I guess waiting for an hour for service was good for me, as it slowed me down, but I was sure a tired puppy when I finally crawled into bed around 10:30. I can’t thank the construction crew, the production team, enough. A job well done!


Today is a new day and I have already done an interview with Rick Cluff for CBC Radio’s morning show. I couldn't get in the building at the address on the website so called the number I had for the Morning Show. They were on air and gave two numbers to call. The only thing I could find in my purse to write with was chalk. Cathy had bought it yesterday while we were picking up the big poster. So soon I was racing around to a back door, being buzzed in and then sitting and doing the interview while still out of breathe.

Cathy and I had a good send off from the crew on Russell Street and then picked up a friend, Romari, as we headed to the ferry. We are rolling east.