Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.
            Anthem
            Leonard Cohen

The other week was the 18th anniversary of my HIV diagnosis and I had made it through most of the day without even realizing. I was walking with a friend when it struck me and I declared the milestone out loud. She looked at me, smiled, and said, “It’s worked out alright for you.” Initially I was taken aback. What an unkind sentiment. I’m HIV+!! How does that work out alright?!?  

I was shocked and scandalized and all those other highly dramatic responses. The drama lasted about a nanosecond until I realized I agreed with her: it has worked out alright. It truly has and it’s this perspective that I tend to live out; sometimes I despair, but usually I’m very even keel with this virus. We had a good laugh making light of what can easily be a depressive topic. My friend is one of the reasons I tend towards optimism.

The anniversary of my diagnosis falls one month before my birthday and for more than a decade I used to celebrate the diagnosis rather than my birthday. Well, maybe “celebrate” is the wrong word – a more appropriate term would be I used to mark the date with a gathering of friends. Recognizing the day served many purposes, but mostly it was an opportunity for me to count my growing blessings.

Please understand I’m no Pollyanna; I can rage against it all with the best of you. Yet I also have an uncanny ability to find a blessing in the shittiest of experiences. I prefer to embrace the full spectrum of life and with this motivation in my heart I have surrounded myself with friends who can see the silver lining without ignoring the gathering storms. It makes for a much more interesting life to try to see all aspects.

How has it worked out alright? Well, I’ve got a great home, my income meets my needs, I work in a community that I love, I have a fulfilling spiritual discipline and I have a treasure trove of dear friends. Most importantly, I have my health, which is strong.

I live in a subsidized unit at a housing co-op. In the mid-80s the co-op designated my suite for a person living with HIV/AIDS. It’s a 2 bedroom unit, but charged as a 1 bedroom. The second bedroom is for a live-in care provider. How forward thinking was that in the mid-80s? It’s been a relief for me to have someone stay here and help me through the rough patches when they happen without it being an economic burden.

Oh money. It’s the source of a lot of anguish, isn’t it? I went onto disability benefits a few years ago and what an adjustment that was! Before I could collect a cent I needed to exhaust my savings. Ugh. So there was the financial readjustment aspect of going onto social assistance and then there was the psychological reconciliation of being dependent on a bureaucracy for my income. Double ugh. But even this has worked out alright for me because my housing is affordable, I have the free time I need to take care of myself and I have an engaging part-time job. For sure I live in poverty, but that is only an economic designation because truth be told I actually live in abundance.

My true riches lay with those I love and I have many dear hearts. My friends are my saving grace and I don’t take them for granted.

Over all, it has worked out alright for me. However, I in no way seek to diminish the very real and intense struggles inherent in living with a life-threatening chronic illness. Yet with that said, I do choose to not focus solely on the struggles but to also recognize the potential for growth. Coming to terms with illness can be a tremendously rich experience. It breaks some people and it makes others stronger. Thankfully I’ve found myself in the latter group. It’s not easy and I can’t say I’m not broken because I am broken. I’m full of cracks. But it’s also worked out alright.

- Monique

*Sigh.*

It was disheartening to read a piece on HIV funding that appeared in Xtra a couple of weeks ago. I could understand author Rob Salerno’s take on the challenging process that many HIV service organizations in Ontario faced recently in applying for funding under a tight deadline. Here in BC we faced it too, and there were supportive phone calls and emails back and forth between groups as we all wrote feverishly to meet said deadline. 

What I found disheartening was Salerno’s comment on one successful funding application. Instead of applauding it, he wrote, “ I’m unconvinced that a province-wide wellness retreat for HIV-positive women …. (is) the best use of limited public funding to fight HIV.”

You know, I’ve heard that before.

Positive Women’s Network has been around for over twenty years, and in that time we’ve had people bluntly ask us why we deserve funding. Why should services for women with HIV get money when so many more men are infected? The answer is this- women get HIV, and are doing so in increasing numbers. Their needs, experiences and lives are different than men’s. A sampling could list gender roles, biological vulnerability, women’s roles in their specific cultures, histories of gender-based violence and sexual assault. Women express the need for women-only services, as we heard over and over when we did a retrospective of our work. One type of organization doesn’t fit all.

We offer a range of services that include weekend retreats for women. These retreats provide health education on HIV, treatments and disease progression; leadership development, and peer support. Women tell us we’ve changed their lives and made a death sentence manageable. Some aren’t sure how they would have gone on if it weren’t for our retreats. If that can be offered to women in other parts of the country, bravo, I say.

Salerno despairs the lack of funding that compromises the work of support organizations, and I get that- there isn’t enough money to go around to everyone. Yet he also recognizes that the organization that successfully received funding has a client base that’s over one third women.

We are fortunate at PWN that many organizations and individuals we’ve worked with over two decades have abandoned their skepticism as they’ve seen the women we work with and the work we do.

HIV funding isn’t endless, as anyone who applies for it knows. But are we in this fight together or what? I’ve believed through the work of many that we are, but obviously there are folks who hold a different opinion.

- Janet

You know the banter that goes back and forth- “What shall I call you?” “Call me anything you want, just don’t call me later to dinner.”

Instead I’m calling you early. 

Friday night may be your “treat night” to go out for dinner or get take out, but why not make it Thursday this week? If your pick your restaurant right, your dining dollars will go to help people living with HIV. 

Dining Out for Life is a North American event that takes place in many cities. Restaurants donate a percentage of their receipts for breakfast, lunch and/ or dinner to AIDS charities. Lower Mainland and Whistler restaurants will direct funds to Friends for Life and A Loving Spoonful. On Vancouver Island, funds will go to AIDS Vancouver Island. And in a few weeks time, on April 26, it will go to the ASK Wellness Centre in Kamloops.

Please help our friends-

Friends for Life is a gem in Vancouver’s West end. Friends for Life provides complementary and alternative health support to people living with HIV and other life-threatening health conditions. They offer a variety of options, from body work to counselling.  If you’re a bingo fan, get your fill weekly and help the organization.

A Loving Spoonful works from this awesome vision: “No one living with AIDS should live with hunger.” They deliver on that through a variety of food programs that include meals and supplements for individuals and families.

AIDS Vancouver Island  offers support and education services in many communities, from Victoria and up the Island to Port Hardy- quite a feat! Faced with complex issues of the many communities they serve, AIDS Vancouver Island has been providing services since 1986.

Folks around Kamloops please don’t forget to mark April 26 on your calendars to benefit ASK Wellness Centre, which offers harm reduction and health management education, as well as crisis funding.

Eat up! (Personally, I’m having breakfast at Joe’s Grill for a start. Best home fries ever.) And hey- sure this post will be stale (!) fast. But you can always give to these organizations at any time, which will be very appreciated.

- Janet 

photo: Morguefile

Super happy- I spent Wednesday at Health Care 2.0 Social Media Camp, an event presented by the BC Patient Safety & Quality Council. It was lovely to see people I’d met previously through the Healthcare and Social Media Canada community (#hcmsca on Twitter) and to meet new faces who are as keen as I am to share the word about the potential of social media tools to engage, build and support health communities.

Social media tools are used by many community groups to enhance their relationships with individuals and organizations. We’re active on Twitter and Facebook, and to a lesser extent, YouTube (there are only so many hours in a day). Social media tools can help reach organizations and individuals who don’t live in the Lower Mainland- wherever there’s Internet, there’s a voice.*  We share program information that helps women get connected with us and ease their isolation. We also share resources and research findings so women with HIV and the folks supporting them can get up to date information for the best care no matter where they are. 

The exciting element of social media is the “social.” It’s participatory, and everyone can have a voice through sharing, discussing, and reflecting on what’s posted. This can result in strengthening communities and visioning change where it’s needed. Ongoing throughout is the opportunity for conversations.

Those of us using Twitter in the HIV community in Canada connect through community hashtags- #HIVCan, #HIV, #AIDS, #AIDSlaw etc. (Here’s a list of the tags often used). We can get program and event information to each other immediately; and share info about local and international action. New findings about HIV, prevention and treatment news is shared far and wide. A lot of activism is also carried out online via petitions that go around the world.

Social Media Tools Perfect for HIV Connections

One of the fantastic things happening through social media tools is the opportunities for patient empowerment, peer to peer connection, and patient to healthcare provider communication- sound familiar?  This is what HIV activism has always been about, and social media streams a great way to carry it on. Now it’s crossing over into other health issues as well. Community development, patient empowerment and making change in how doctors and patients work together is a growing wave that is supported by the energy flowing through social media channels. 

For those of us in the wide reaches of Canada working with little money for meeting in person, social media tools are also a great way to get to know people. As Kat Dodds from Hello Cool World said “Social media is all about collaboration; connecting with the people you want to work with.”  The HIV community is rich with accomplishments and ripe with possibility.

Like any research you read, always consider your sources- there’s incorrect information out there.  Look for established AIDS support and research organizations, medical researchers, or places like the CIHR Canadian HIV Trials Network or BC Centre for Excellence in HIV/AIDS. You can start by looking at the lists we have on our Twitter feed. And if you haven’t already, think about joining conversations on Twitter about healthcare and social media. Here in Canada, use #hcsmca to find out more about it. If you’d rather look for HIV info, #HIV will get you lots of stuff. There’s a ton to discover.

- Janet

*Communities without reliable internet access are harder to reach, obviously. I hope this will change as systems are upgraded.
 

Happy International Women’s Day! Today we honour the work of generations who have made change to make our world what it is today. And today we celebrate the work we’re all doing to make things better for the women of tomorrow.  

There is still a lot to take on- gender violence, equal rights, cultural "norms" that place girls and women behind men. Voting rights, control of money, property ownership, health care, and access to birth control options are all works in progress. These are just a few of the issues we have to take on. There’s a lot of work in progress.

And that is amazing. 

Women often face ongoing and frequently brutal adversity, but that doesn’t stop us. Women are resilient, resourceful, and passionate. 

Happy International Women’s Day to all women. To our girls- we’re working on a better future for you. 

Together. 

Janet

Cross-posted at You Should Know

photo: MorgueFile
 

I’ve been practicing yoga for a few years, but have gotten much more disciplined with my practice this last year. My first yoga class was more than 30 years ago and while I enjoyed the experience I wasn’t too motivated to add it into my daily routine. When I was diagnosed with HIV in the mid-90s I gave yoga another try and found it very beneficial for managing stress. However, yet again, I didn’t practice it with any regularity. 

Last year I started attending classes at Unity Yoga Teahouse and things just clicked for me; the studio is the right combination of spiritual, physical, intellectual, community, and individual for me to feel fully engaged. You know how some yoga studios are all about the athletics? Or some are far too religiously dogmatic? Or some have an unspoken dress-code? Not here. All are welcome at Unity. And they offer a discounted drop-in rate of $5 to Friends for Life members. Awesome deal!

Everyday I head down to my favourite studio for a class; sometimes I stick around for two. If you had told me a year ago that I’d be stepping onto a yoga mat everyday I would have laughed. Where would I find time for such indulgence? How could I afford that luxury? By the end of my first week of paying the drop-in rate I figured out where to find the time and how to afford this practice. Why? Because I have never, ever, felt more powerful, more sexually balanced or more fully integrated.

Facing "Sexy"  

Like many people in our society I struggle with feeling good enough, and as a woman I have struggled with feeling attractive. Everyday we are bombarded with homogenous images of beauty, and truth be told, I don’t fit that narrow definition. Not many of us do. Furthermore, we are constantly told to look sexy but to not be sexual. It’s incongruous and maddening. We are all such fragile creatures, walking around doing our best to protect our soft spots. We observe external markers of success and we internalize them hoping that we too will be successful. What does success look like for you? For me success is being physically capable, personally safe, intellectually stimulated and spiritually aglow.

At times, my struggle with feeling good enough has been overwhelming – receiving an HIV diagnosis can be soul crushing. I was overcome with feelings of shame. Quite simply, I hated myself and judged myself very harshly. I could not separate my actions from my being; I determined my ‘bad’ actions made me a ‘bad’ person. I felt used, dirty and worthless. In speaking with other HIV+ women I know I am not alone in feeling this way. I think we feel such self loathing because HIV is often transmitted through acts of intimacy and our society has wrapped a lot of judgement around sexuality, particularly women’s sexuality.

In looking back at myself prior to infection I see a young woman who was using her sexuality to affirm her worth. I equated his interest in having sex with me to him liking/loving me. I know some of those men did truly like/love me, however many also just wanted to have sex. I’m OK with that now, but at the time I felt confusion and pain. In looking even further back, I see a little girl who was exposed to sexual images, conversations, and activities that were downright inappropriate. It’s not surprising I looked to my sexuality for my self worth. My willingness to connect sexually was my currency and I went on a spending spree. I never did find fulfillment.

Where I Am Now 

In my last post I shared that I have been celibate for 18 years and it is during these years that I have put the work into healing those traumas and into learning new skills. I know my youthful exuberance with sex was not bad. I know I was not, and am not, a bad person. I also know a ‘good’ person will sometimes make ‘bad’ choices. We’re all fallible; therefore, I take responsibility for my actions and their consequences. That’s basically all we can do, right?

I am now comfortable in my body and I am comfortable with my sexuality. I’m eager to express myself fully and completely. I know I will be a curious, generous and loving partner when the time presents itself.

I am comfortable in my body because I have a confidence that is not dependent on external input. It is my daily yoga practice that gives me this assurance. In challenging my body, quieting my mind, and honouring my heart I have found a welcome discipline that keeps me edified. Yoga is my magic bullet. What is yours?

- Monique 

photo: iStock 

Earlier this week on my You Should Know Twitter feed, someone sent me a link reporting the results of a court case in the US-  a wrestler who knew his positive HIV status but didn’t disclose it to multiple sex partners that followed, putting them at risk for HIV infection. His defense was that he was a sex addict and couldn’t help himself.  Oh boy.

The question of sex addiction aside, let’s talk about the man’s failure to disclose his HIV status. This is a much debated topic in many fields these days- the law (obviously), public health, human rights, HIV prevention and education, health care, you name it. The Canadian HIV/AIDS Legal Network has some great information on the issues, and I’d urge readers to check it out. In particular, I’d urge you to look at their recent brief on an upcoming Supreme Court case.  Two important cases will be tried. 

Here at Positive Women’s Network the question of HIV and criminalization often comes up. We work with women who are infected with HIV, many of whom had no idea their sex partner had HIV. We’ve supported women going through legal proceedings where they are giving evidence against former partners that infected them. We’ve also supported women who themselves have been accused of non-disclosure. Our goal of supporting all women with HIV demands that we look at the issue of criminalization. We’ve been asked to develop policy that could be used by other organizations, as we’re one of only two organizations in Canada that focuses on women and HIV exclusively.

We’ve witnessed the pain and suffering for women on both sides of the criminalization fence.  To provide the most comprehensive support we can, here’s what we’ve come to about the issue at present.

There is no evidence that criminal law is effective at preventing HIV transmission.  People’s sexual decisions are dynamic, intimate and often spontaneous. Criminal laws and convictions haven’t changed that. For women in situations of abuse, coercion or assault, decisions can be about reducing harm, not enhancing it. (One of the cases to be heard February 8 involves a woman and her abusive former partner).

Criminalization may actually drive people away from public health initiatives like testing, counselling, and support. In this US case, the man knew he had HIV, but admits that he didn’t talk about it as he didn’t want his family to know. Why? Probably because HIV is still a highly stigmatized, misunderstood disease.  People with HIV often experience discrimination- even in this day and age when prevention, treatment and education are available.Criminalization can add to this, not diminish it. 

Criminalization gives people a false sense of security.  The idea that “he (or she) would tell me if they had HIV because the law says so” is obviously not the case.

We feel that a public policy response and public health laws are preferable to criminal law. How do we support people with HIV, and all people, to have comprehensive sex education and unbiased HIV prevention information?  How do we support people to gain the power to act on their knowledge and look after their sexual health? How do we address gender and relationship inequality to make this possible?

These are big issues and big challenges.

Their resolution isn’t likely found in a courtroom.

-  Janet

  Photo: IStock

This is the final blog in our series: PWN at 20 which honours our twentieth anniversary providing support, education, community resources and networking for women with HIV and health care and social services communities.

It’s World AIDS Day, an internationally recognized time to remember the past and rally for the future. This year there are multiple themes, a reflection of the diverse issues presented by HIV. The UK National AIDS Trust says “Act Aware.” UNAIDS has set sights on “Getting to Zero.” Here at home, the Canadian AIDS Society urges Canadians to “Do Something.” There is still so much to be done.

Twenty years ago some visionary women set out to support women with HIV in the Vancouver area. They were women with HIV and women from various backgrounds- nursing, social work, and education. They knew something needed to be done for women specifically, and their first meeting in the common room of a housing co-op led to the nationally recognized organization we are today. One of the big themes talked about back then was the stigma that women face, especially as members of intricate family units that centre around them.

Stigma still exists everywhere for women with HIV. A Canadian study of women revealed that stigma figures highly in their day to day lives, as does sexism and racism.  Women the world over report this. There is stigma in having HIV, and stigma in “bringing it into the family” whether this was the actual case or not. Women who discover their HIV status during pregnancy often bear the brunt of blame, as they receive the diagnosis their husbands haven’t sought.  

But women challenge stigma, and challenge the destruction that HIV brings. The Grandmothers to Grandmothers  movement is a great example. Many grandmothers in African countries have to step back into parenting their orphaned grandchildren when adult children die of AIDS. Grandmothers here in Canada work to raise awareness of the need for this work and funds to support it through the Stephen Lewis Foundation. (Yes, that IS a plug to donate!)

Peer support is also an essential part of confronting HIV as it weaves through medical, political, socioeconomic, geographical, and intimately personal pieces of life. (True, that sentence is a challenge. – but so is living with HIV). Members at Positive Women’s Network say “PWN is a confidential and safe space created for women…it feels like a family, feels like going home.”

As another member puts it, “Women heal women.”

But women can’t do this work alone. Women and men need to work together to change the shape of what it’s like to live with HIV. Many courageous and strong people do just that. Here in BC, PWN is lucky to work alongside many organizations that recognize the unique need for women’s services and complement them with their own. We’re also grateful to groups and individuals we work with across the country.

As the PWN community contemplates the beginning our twenty-first year in “Challenging HIV. Changing Women’s Lives” we ask everyone to “Do something” on World AIDS Day. Learn about HIV; talk safer sex with those you care about, young and old. Share the humility that this could happen to any one of us – risk factors for HIV transmission are based on human vulnerabilities. Make sure you and your loved ones know how to prevent HIV and where to go for support should it be needed. Don’t deny- do something.

- Janet 

Another edit of this post is on You Should Know

photo: Kevin Rosseel/ Morguefile

The first World AIDS Day was December 1, 1989 with the theme Our Lives, Our World – Let’s Take Care of Each Other. This shared responsibility theme has been recreated over many years on December 1, with a focus on different members of the world community. World AIDS Day is an opportunity to recognize the many ways in which AIDS challenges the world- medically, socially, emotionally and politically.

I’ve come across three different World AIDS Day messages so far. UK National AIDS Trust says Act Aware, UNAIDS is Getting to Zero and here in Canada, the Canadian AIDS Society urges us to Do Something. Over the next few weeks, we’ll be blogging on the different themes.

Act Aware

UK National AIDS Trust breaks down their awareness theme into personal, social and community building approaches:

• Personal:  Learn about HIV transmission and look after yourself and your sex partners
• Social: Educate yourself and others about HIV and raise funds for HIV services
• Community Building:  Share AIDS Day events you’re having or attending. what events you’re holding or being part of on the day itself

I admire their succinct goals, because awareness spans so many possibilities and prejudices. Under the umbrella of awareness, HIV activists have to combat homophobia, transphobia and many of the “isms”- sexism, racism, and classism among them. Awareness is not only a nation (or world) wide conversation; it’s a personal one with individuals-  from sex partners to politicians who’d rather ignore it. 

A Vancouver awareness campaign is the recently launched It’s Different Now. A tagline of the campaign says “We don’t think you’re special” and explains why routine HIV testing is a great idea for everyone who is sexual – putting them at risk for STIs including HIV. Offering tests to everyone rather than those in “at-risk” groups emphasizes the message that HIV is different than it used to be.

Aware is being in the present – in the bedroom or bar, in the emergency department, at the doctor’s. This World AIDS Day and every day, what’s your version of HIV awareness? 

- Janet

Photos: HIV/AIDS blocks: jscreationzs/ freedigitalphtos.net

Circle of friends: savit keawtavee / freedigitalphtos.net

I’ll warn you now; this isn’t a topic that many people want to embrace: end of life planning. I was made well aware of that recently in a meeting when folks admitted their own discomfort with it, but jumped into discussion all the same. One of the folks involved shared a blog from Seattle Mama Doc, who dreads leaving her children when she dies, and knows the best thing is to “plan” her death. But even the good doctor hasn’t done it. 

Whatever health is at the moment- HIV or otherwise- we’re all going to reach the end of our lives at some point. None of us knows exactly when that transition will arrive, but when it does, don’t you want it to happen under your own terms?

I’m not talking assisted suicide- that’s a whole topic in itself. I’m thinking more generally about end of life planning. Do your friends and family know what you want? Do they know what kind of medical care you want to receive? Or what your health care team should do if you can’t communicate? Would you like to be on life support? Would you like to be resuscitated?

Unfortunately, life circumstances can override plans- a violent death, an accident. Too many women, particularly the marginalized, meet end of life this way. I know it’s a possibility, but still feel that thinking about end of life decisions can actually be empowering. So we consider our lives with dignity and grace. We all deserve it.

End of life planning can provide this information to your friends, family and health care professionals so they may care for you as you would like. So you have options even when you can’t speak for yourself. Senator Sharon Carstairs has been quoted as saying Canada is a “death denying society.”

It used to be with HIV, people felt pressured to think about the end immediately. Thank goodness that’s changed for many, but it doesn’t remove the fact that it’s still important to think about what will happen to your belongings, to your children if you’re a parent, to your healthcare if you’re dealing with decisions to be made.

No matter what your health is, it’s something we all should think about. Here are five questions to think about from the Engage with Grace Project. It was inspired by a 32 year old mom who had no idea she would die so young. 

Here in British Columbia, Representation Agreements* can cover a variety of issues you might need support with if your health is in question and you can’t speak for yourself.

- Janet

*Please note that if you had a Representation Agreement in place before September 1, 2011 when legislation changed, you may need to make some changes to it.) 

photo: Morguefile