December is a challenging month. We’ve just come out of AIDS Awareness Week, and moved on to other deadlines without missing a beat. But, you know, AIDS Awareness Week is tough. It gets you thinking about certain realities, realities about the numbers of people infected, unable to access treatment, threats of criminalization and fears about the future. And then there is the remembrance of loss, and supporting people through that loss.

I watched We Were Here twice.  That film was/is tragic, and what is also tragic is how hard we have to work to try and get our own community to remember and also recognize HIV & AIDS and its ongoing impact, sometimes with limited success. It gets discouraging. Meanwhile, we’ve had two recent tragedies in our community, hitting those whose lives have already been impacted with trauma where it really hurts. Did I mention this work gets tough at times?

I write a lot about self-care on PositiveLite.com. It’s good to find distractions to have a break from thinking about this kind of heavy stuff. I just realized, though, that the movies I watch in my “down time” usually have content related to HIV & AIDS, grief and loss. I’ve probably re-watched one of my favourite movies, RENT, about 5 times in the last several months and in the last couple of days found myself re-watching, yet again, my Queer as Folk DVDs. Yesterday at my lunch break, my colleagues and I watched Angel in RENT pass away from AIDS, and last night I watched the QAF episode where Ben discloses his HIV status to Michael.

I frequently borrow DVDs from my local public library. Upon returning from my most recent visit, I looked down at the stack of DVDs I’d selected and realized that almost all of them were about death and loss. I borrowed Ordinary People as well as 21 Grams (which also deals with death, loss and grief, and addictions/recovery) and…Angels in America. The last movie I saw in the theatres was 50/50, consistent with the theme of disease & dying.

Maybe I naturally gravitate to media that deals with HIV & AIDS, grief and loss to help me process stuff and get some feeling of connectedness. It’s difficult to find ways of processing this stuff otherwise.And it’s particularly tough around the holidays because you’re expected to show up at a party and be full of holiday cheer. But it’s challenging to go to a party the day after you learn about a tragedy in your community and pretend like you feel fine.  Yet, you don’t want to alienate your friends by depressing people. When something stressful happens and people at parties ask a question like, “how are you” or “how’s work going” I hear a little voice inside remind me to self-censor: “don’t be Debbie Downer!”

It seems kind of morbid, but I think there is some cathartic benefit to my movie selections. Then again, it’s good to have a break, too. So my HIV-free media “to-watch” list for the holidays will include some of my favourite Christmas classics: The Ref, Bad Santa, and Love Actually. And, this weekend, I’m going to watch Sherlock Holmes, only because Robert Downey Jr. is smoking hot, and sometimes we need a little hotness to melt away the stress.

This disease will be the end of many of us, but not nearly all, and the dead will be commemorated and will struggle on with the living, and we are not going away. We won’t die secret deaths anymore. The word only spins forward. We will be citizens. The time has come.

— Tony Kushner, Angels in America, Part Two: Perestroika (1992)

I was born in 1981, the year the first case of AIDS (then identified as GRID) was documented. Growing up during the AIDS pandemic meant that I was not immune from the danger, fear and loss associated with the pandemic. But as a mere child, I was also protected from the worst.

This week, ACG screened the documentary film We Were Here. (An excellent review of the movie by John McCullagh can be read on PositiveLite.Com). What is captured in the film, beyond the magnitude of death, suffering and loss from the AIDS epidemic? The incredible will, the selflessness of people who were affected, infected, and dying - and their creative, spirited, unstoppable drive to make change and save lives.

We Were Here reveals just a few of the civil rights attacks on gay men and HIV positive people in the 1980s. There were discussions around quarantine, unethical research practices, the closure of bathhouses, testing without consent, and job loss due to HIV. The civil rights attacks were not limited to the States. In Canada, activists fought the same forms of discrimination, including bathhouse closures, restrictions on blood donation, and attacks against gay men’s sexuality, just to name a few.

AIDS Activism hasn’t just been about life and death, it has also been about protecting people’s human rights – the right to self-determination. Early AIDS Activism changed so much, beyond the scope of the disease; it changed the way health care and support services are provided in America, and in Canada.  When the Denver Principles were written, “people with AIDS” were identified as more than patients – as agents, as people - who needed to be in control of their health care, treatment, sex life, and their destiny. At this point the role of health-care providers was clarified – “to serve people, whether the treatment is AIDS or anything else.”

While reading “AIDS Activist” by Ann Silversides (on Michael Lynch and AIDS Activism in Toronto), I was struck by how fundamental AIDS Activism has been in shifting to a more inclusive, ethical, patient-centred kind of research and treatment. When a federal government created an Ad Hoc Task Force on AIDS, the chairman responded to complaints that the Task Force did not contain members of risk groups by saying that having interest groups involved in scientific, technical discussions would not be appropriate. When Ontario developed an Advisory Committee on medical service needs, the question was again raised if the gay community would be represented. Ontario Health Minister Larry Grossman replied, “We have an advisory committee on cancer and we don’t have cancer victims on it.”

Enough said. Reading this reminded me of how far we have come towards recognizing people living with HIV as citizens. Through the Denver Principles, the Paris Declaration, the UNAIDS endorsement of GIPA, we have, in conjunction with better treatment and greater awareness of the social determinants of health, helped to align civil and human rights with medical and social service delivery.

The impact is extraordinary.

How different my work would look if I was working here at ACG 15 or 20 years ago.  On ACG’s website, a peer blogger who blogs by the name Church Mouse has been documenting her experience of love and loss and living with HIV in the ‘90s. In one post, “The Soldier Within,” Church Mouse describes disclosing her status to her mother… with her support worker by her side. I can’t help but imagine what a different role the support workers and volunteers at ASOs played then – something I will never experience. Today, in 2011, a great deal of my work in Positive Prevention involves creating workshops and training courses that promote health and wellness among people living with HIV. In a way, most of my work focuses on the top two tiers of Maslow’s hierarchy of needs: esteem and self-actualization.  I am grateful for those who have made room for this to be possible.

There is one more reason for me to be grateful to those have fought in the AIDS war.  Like all of you reading this, my life has been deeply enriched by people in it who are living with HIV. I am grateful for the HIV positive people in my life who make me laugh, inspire me, support me and who have taught me much more than anything I could ever have hoped to learn in graduate school. People living with HIV are my friends, mentors, co-workers; they are my community.  It has occurred to me that without the AIDS activists who struggled in those early years, I would not have the same people in my life today. It is an eerie feeling, and I can only resolve it by expressing gratitude for the energy, commitment and dedication of those whose hard work has allowed my life to be enriched by so many people living with HIV.

The story is not over.  Today we are fighting criminalization, stigma, rising infection rates and the ever-stubborn “isms” and “phobias”. We don’t know what the future holds for those aging with HIV, there is still no cure, no vaccine and meds that are not exactly side-effect free.  We have a lot of work to do. And yet I feel the urge to pause and reflect and say - to those who have worked for a better future for us all, to those who have died and to those living with HIV - thank you.

When I was 15 years old I wore combat boots and army jackets I found at the Army Surplus store and stage dived into mosh-pits at hardcore shows. I also started up an animal rights group called AREA (Animal Rights and Environmental Awareness) with the aid of my friends. The group gained some great visibility in our city. We worked collaboratively with older, more established animal rights groups in the community. We got vegetarian items put on the school cafeteria menu, organized a trip to Ottawa to protest the seal hunt, and even brought Peter Singer in to give a speech in the school auditorium.

I learned a lot in those early days of activism.  In particular, I learned a lot about what not to do.

When I was 15 I was impressionable, and one of my first experiences of activism came from PETA (People Against the Ethical Treatment of Animals). I now know PETA to be a giant wheel of propaganda that uses shock techniques to jar and horrify people into obedience. Their president, Ingrid Newkirk, famously compared chickens in slaughterhouses to holocaust victims.

Our group was much more moderate. We didn’t use direct action techniques, we conducted peaceful protests. We made signs and banners and costumes, did a lot of letter writing, hosted meetings in the public library and held benefit concerts.

One day, during a protest in downtown London (Ontario), a PETA representative joined us. He argued fiercely with any member of the public who dared to question our cause. “Happy heart attack,” he shouted at one man. “That’s not how we do things here,” I thought. “He’s alienating the people we are trying to reach.”

Yet, I too had an extremist attitude. I sneered at “vegans” who ate commercial baked goods where the last ingredient happened to be lactic acid. I shoved graphic PETA literature at everyone I could. My favourite t-shirts had logos like “Oscar Murder” and “Dairy is Rape.”

I don’t regret the illegal methods of activism we occasionally used, but I do regret my attitude. At the age of 15, I saw things as black and white, us versus them, right and wrong. I lacked understanding, compassion or flexibility towards people who were not 100% committed to our goals and mentality as activists. I’m certain it turned people off.

Flash forward 15 years. I’m no longer a vegetarian; in fact, I’ll eat just about anything, even pigs’ ears and bone marrow. I’m no longer an animal rights activist. But activism is still a part of my life.

My cause has changed, but I’m also a much better communicator now and a lot more moderate. That being said, I don’t budge on my values or issues that are important to me. And sometimes I see myself lacking in patience when communicating to others about these issues. Take the criminalization of HIV non-disclosure. My very first fight with my boyfriend happened early in the relationship and it was over this subject. I can’t even remember why I brought the issue up. I think I mentioned it in passing as part of what bothered me that day. I expected him to just understand, to get it, to see clearly as to how criminalization was causing ripples - no, tidal waves - of problems.  It caused a fight because my scientist boyfriend, naturally curious and trained to be sceptical, questioned me, and didn’t like my “I’m right about this and I don’t want to hear anything different” attitude.

Issues like this get me worked up quickly, because it’s an emotional discussion for me. But how can I expect a lay person to understand this complex issue without a proper introduction? Most people don’t even know the basic facts about HIV transmission, let alone the complexities that accompany disclosure and the law. I should have taken more time to gradually introduce the issue.

At “The Art and Science of Knowledge Exchange,”a conference put on by CATIE, Richard Elliot gave a presentation called “Raising the Bar to Limit the Law: Principle and Pragmatism in Educating Criminal Justice System Actors on HIV.” The lecture reminded me that lay people empathize with the HIV negative person in a criminal case because they relate to them, so they need to be brought in to the conversation in ways that allow them to see different sides of the issue. Other lectures at the conference, like “Knowledge Exchange in the Moral Borderland” by Dan Small, made me think about the process of changing cultural norms. Whether we’re trying to get the community on board with harm reduction, safe injection sites or prosecutorial guidelines on HIV non-disclosure, we need to work on a more fundamental level of helping people reflect on the values that inform their beliefs. These shifts need to accompany sufficient knowledge so that people can re-imagine and reinterpret roles and concepts like law, public health, human rights and risk management.

It’s not easy. But shifts in values and culture are sea-changes that require patience on the part of the captain.

I mentioned in my bio for this blog that I am an atheist. Why is that relevant to mention?

In addition to being a part of our identity, I think our religious (or secular) orientation guides how we interpret what is happening around us and how we deal with stressful events. For religious people, there are often clear ceremonies or rituals to be used in time of worry or grief, such as prayer. But what do you do if you’re an atheist?

In a recent speech on health-promotion, an HIV specialist told us, “if you don’t already have a higher power, I highly recommend that you find one.” Like most atheists, I’m tired of hearing from religious people that I ought to be religious too. But her point was an important one, and that is, a spiritual orientation helps us to feel like we have meaning and purpose in our lives and provides us with a connection to something bigger; it’s a component of emotional and mental wellness. I have learned though, that deities need not apply when it comes to my own wellness. I can find the connections, the meaning and purpose I need for without looking to the super-natural. I think this is a personal process, and I hesitate to tell anyone what to do in this regard. I will say that for me, this process has involved mindfulness (practicing being present,) meditation and yoga, spending time in nature, marvelling at the awesomeness of our universe - just as it is - and focusing on each of our ability to make have an impact, right here, today, as well as the lasting imprint of that impact.

To other atheists, I would say, seek out things that make you feel grounded and connected to the world and spend time reflecting on what is important to you. Spirituality doesn’t have to look like what you’ve always been told spirituality should look like, and it doesn’t have to take place in a mosque or church or temple. Spirituality can be found in nature with a camera, or in a paintbrush and canvas, or in the process of reflecting on what is important to you and what you want to produce or give back to the world. Yoga and meditation, although sometimes affiliated with religious beliefs, are non-religious practices, accessible to anyone. In particular, you may want to check out the metta meditation practice (loving-kindness practice), which focuses on cultivating compassion, and which I think may satisfy the non-religious person’s desire for prayer.

I wrote another post last year about preventing compassion fatigue and included ways of finding yoga & meditation in the community that is free and/or affordable, which you can find here.

Megan’s introduction

Our staff had a great opportunity last month to participate in a day-long workshop by Françoise Mathieu, a specialist in the area of compassion fatigue. For those unfamiliar with the term, it refers to wear and tear on the mind, body and soul that comes from taking on and internalizing the trauma of other people. Anyone who has worked in the field of HIV & AIDS for any length of time can probably relate, because of the proliferation of traumatic experiences often associated with the acquisition of, and lived experience with, HIV & AIDS.

Surely it’s not only staff that may be affected by compassion fatigue; it’s the participants too, especially those who are engaged in volunteerism and Positive Prevention work. Anyone who surrounds themselves with HIV and its related issues risks getting overwhelmed.

I’ve decided to write a short series on small things I’ve been integrating into my life in order to protect myself from becoming compassion fatigued. I’m trying to make self-care a genuine priority so that I can work in this field and be present, mindful and a good support to others. The following posts will be about strategies I’ve adopted and what I’ve learned.

Part One: No bad news after 8pm

I once heard a recommendation that you should take “news fasts” to promote stress-reduction. I think this is a great idea. Reducing your news-intake is a really healthy thing to do, especially if you’ve already got enough bad news in your life. Does the idea of restricting or eliminating your news cause you stress? Consider it anyway! You won’t end up in a vacuum by taking a news-fast, I promise.

I actually don’t read the newspaper – not online, not in print - nor do I listen to the news on the radio. I don’t have a television either, so by default, I don’t watch the news on TV. I absorb some headlines via my Twitter and Facebook stream, but that is the extent of me seeking-out news. And guess what – I’m not a total ostrich. I stay current on topics that pertain to my work. I hear about major events from my colleagues, friends and family and research further when it’s important. The truth is, news is so well-integrated into our culture that you can avoid seeking it completely and still retain a reasonably good grasp on what’s happening out there.

It’s easily arguable that it’s important for us to stay current with news that’s happening in our local communities as well as our world. But I argue that it’s best for my sanity to take a backseat and be more choosey about what kind of information I let into my brain. The way I figure it, those of us who work in this field already devote a great deal of our time to addressing some pretty damn tough issues. I believe it could actually do more harm than good to read about tragedies happening around the world that are out of my control. After all, none of us can take the entire world on our shoulders.

François reminded us that for most of our partners or family members, watching the news after work is the first time they are encountering bad news that day. They can handle it. But for those of us working in this field, we’ve been immersed in bad news for a good chunk of the day and we need a break. So I have a rule: no bad news after 8pm. I need some time at the end of the day to help me wind down, relax, and sleep. After eight o’clock, not only do I not want to read any news, I don’t want to hear about any sad stories that have happened during the day.

If you don’t want to take a news-fast, I recommend putting a restriction on the amount of time you engage with sources of media that could, without warning, shower you with bad news – like Facebook or television. The end of the day should be your time to let your mind slow down and be a little bit calmer. Do you really want your last thoughts of the day to be about war, rape, or Charlie Sheen?

This post is ultimately going to point towards the conclusion that Justin Bieber crafts are good for your mental health. Stay with me.

I recently had a conversation with someone where I recounted my evening putting together a homemade present for my friend’s daughter. He said, “it’s great how you’re able to do these kinds of activities in the evening. I need to get over my thinking that I always have to be doing something productive.”

Not productive? I actually think my evening spent cutting pictures of Justin Bieber out of magazines and gluing them to a box was extremely productive. It’s a matter of how we define productivity. Yes, the craft project – a decorative Justin Bieber treasure box - was a present for a 10 year old girl, so that gave it some value. (Make a child happy, and all that.) But it also was fun, and I was using a completely different part of my brain that I had not touched all day – or all week – long.

When I was finished making the box, I was surprised at how I’d gone from feeling exhausted to feeling refreshed. I think it was because I tapped into a creative part of me, focused on something completely relaxing and as far from HIV as I could get, and I got to be a bit of a kid for a couple of hours.

A colleague recently told me that she likes TV as a winding down activity because it’s so far from real life. “Everything gets wrapped up at the end of the episode,” she said. I see her point, and I like TV as a form of escape sometimes, but generally speaking, I don’t feel as refreshed when I finish a night of TV watching than I do when I’m engaged in another activity that is genuinely relaxing, but captures another part of my attention. This is why “having a life” outside of work and doing things unrelated to HIV is so important. We need to have hobbies, try new things, spend time with different people, and utilize the parts of ourselves that might get neglected in the sea of HIV.