If there is one thing that gets to me about being HIV, a condition which I’ve otherwise learned to accept and adapt to, it’s that I’m tired of being tired. My common sense approaches to it, like taking naps in the afternoon or going to bed earlier, do in fact help, even if they don’t eliminate the condition. It’s a constant in my life, though.  I can’t even remember a time since my diagnosis in 1993 when I haven’t been tired.

Of course aging hasn’t helped

I had a cold this week. Not a huge cold that used up multiple boxes of Kleenex, anti-cold pills and sore throat lozenges, but a cold nevertheless. Usually I’m curious how my immune system will function and I do all (or most of) the right things to help it - rest, drink fluids, take Cold FX perhaps. This time I decided to soldier on, not even getting more than the usual amount of rest. Besides, I had a couple of things I really didn’t want to miss out on – a trip Tuesday to see Billy Elliot in Toronto, a volunteer speak thing in Peterborough the day after, an all-candidates meeting sometime else, that kind of thing.

Coming home from the Peterborough gig, though, I couldn’t believe how tired I was. I hate driving while I’m that tired. It scares me. Sometimes I stop and get a strong coffee on the road, but there’s nowhere like that on the way home. In any event, I got home OK and promptly crashed. Clearly my body was telling me to rest, even though by that time my cold was much improved. But the next day I was barely functioning either. I spent much of the afternoon asleep, and was still tired when I woke up. (That’s a classic symptom of HIV-related fatigue, I’ve learned.)

All of which made me think about how being tired has been a constant in my life, ever since I was diagnosed. In fact at times, it has been a key basis for my disability claim. There have been complications that have come and gone that have significantly bolstered the claim, it's true, and there certainly are now, with my neuropathy and all, but I’ve always mentioned tiredness as one of the primary reasons I would find it difficult to work.

That’s not to say I don’t have a busy life, even though most of it is not particularly ambulatory. And there are days here and there which resemble work days, like those conferences I attend which have unforgiving 9-5 agendas, sometimes capped by evening events, which I always thought were way too challenging for most HIVers, but which we all attempt to navigate anyway. (It usually results in crashing after a day or two of that and a period of several days to recover.)

Anyway, tiredness or fatigue associated with HIV is not something I’ve really investigated. It always seems to be a given in my life with HIV, and besides, my area of expertise has never been medical issues or treatment issues; I tend to stay clear of them. When I do research which wanders in to those kinds of topics, it’s usually curiosity rather than researching ways to fix things. Anything medical I leave to my doctor. It’s far from the perfect care model, I know, but I always have done things that way.

So it was probably curiosity this week that drove me to find out more about HIV and fatigue. First some resources, I can recommend. CATIE, my first line of enquiry whenever I get curious about what ails me, talks about fatigue here.  You’ll note that fatigue can be caused by the infection itself, a side effect of some of the common drugs we take, or a symptom of underlying conditions, particularly anaemia.

Another reliable resource, The Body, has a very comprehensive section on HIV-related fatigue. It’s here . Turns out that it’s extremely common in HIVers. The Body says “many providers believe that fatigue is one of the most prevalent -- yet under-reported, under-recognized, and under-treated -- aspects of HIV disease. Several studies suggest that MOST people with HIV/AIDS experience fatigue at some point during their illness, with estimates ranging from less than 50% to more than 80%."  Not just under-reported and under-treated, it seems to me, but a symptom that’s seldom discussed in any substantive way. It’s just THERE.

I can't help but think that tiredness comes from dealing with pain too.  In my case, the peripheral neuropathy I suffer from in my feet is definitely of the debilitating kind.

The Body says that there are a lot of factors which cause fatigue. “Among these are anaemia, hormonal imbalances (especially low levels of the male hormone testosterone and adrenal hormones), depression and anxiety, poor nutrition, insufficient or poor quality sleep, lack of physical activity, and medication side effects.” (I can check off a few of those.) It also says that there is no one course of treatment and in fact it largely goes untreated.

There’s even a website devoted entirely to HIV-related fatigue. It’s here and it includes a handy little quiz to determine whether you have HIV-related fatigue. I didn’t take it, but falling asleep while taking the questionnaire scores extra points, I imagine.

(Part One appears here)

The notion that rural Canada is unwelcoming of minorities may in fact be true in some places, I don’t know. It certainly prevents some queer rural folks proclaiming they’re gay. It certainly inhibits HIV positive folks from disclosing their status more often than not.

When I first moved to the country thirteen years ago, I met another guy who was out as a gay man, but not ready to announce his positive status to the world. “People will burn your house down if you tell them that” he warned me, as if that had ever happened. I brushed him off, of course. It’s common for HIV positive folks to fear the worst if we disclose – society, and the stigma it nurtures for HIV and AIDS, conditions us to do that that, without challenge.  So we’re tempted to keep quiet, and act as if everything is normal, as if living a lie is a healthy way to live, as if our physical and mental health won’t suffer from leading a double life. But - and here’s the rub - often this deception is unnecessary, because in truth, rural Canada, like anywhere else, isn’t always as hostile as it might first appear.

Underneath the locals’ curiosity about strangers, which might perhaps be mistaken for something darker, more often than not lurks the inherent decency and mutual caring for each other that exists in farming communities everywhere, and has done for centuries.

And then there’s the hugging phenomenon. When I talk to groups about HIV, I often touch on the history of the epidemic – how people were shunned like lepers, how nurses wouldn’t touch them and how food was shoved at them in hospitals. “Trays pushed under the door”, we are told, as if that were possible, but you get the picture anyway. There was a lot of fear then, which showed itself in unhelpful ways, we know that. And then along came Lady Di, photographed hugging patients at an AIDS hospice, because a) it was perfectly safe to do so, and b) because she had more public relations smarts, combined with more humanity, than all of the royal family put together.

Anyway, the act of hugging poz folks became OK for the enlightened after that. In in fact it became de rigueur. Nowadays, the groups that I talk to often come up to the front, after I’ve finished, and hug me, one by one. Doesn’t matter if it’s because they were moved by the Lady Di story I told them or not. The important thing for me – and for them, I think - is they are making a statement. And believe me; it’s so damned good to see an audience of strangers do something with such undeniably political overtones as this.   I always come out smiling.

If all this sounds more cosy than most activists are used to, and I’d wager it is, know that I’m no stranger to pushing the envelope. AIDS fundraisers, for instance, are a regular fixture of the little diner I was once scared to go in to. My photography – I’m perhaps most well known for images of cute puppies, because those kind of photographs sell best   – has an edgier side to it too. My solo shows have featured same-sex loving, for instance; one show was devoted entirely to photos of my HIV treatment - the drawing of blood, the clinic visits, the minutiae of hospital stays, et al. I’m not sure what people thought about those.

My persona in all of this, though, has always been one of a normal, fully functioning person, rather than a damaged one. I hate being thought of as damaged. Too bad if those concerned with HIV prevention would rather I paint HIV as a dread, crippling disease. True it can be, but that’s not a mantle I can wear comfortably, or even healthily. In the context of HIV in fact, I like to stress my normalcy, rather than what sets me apart. Besides, I cannot stop new infections: how to do that is a moot point indeed, but I’d suggest the “scared straight” approach never works. And even if it did, I’ll pass on being Exhibit A, there to warn people not to become someone like me.

In any event, I guess all this really is about going the assimilation route through necessity– fitting in, if you like, rather than standing apart, to make a point. But I honestly don’t feel like I’ve let down hard-core activists who blanche at the A-word.

“Fitting in” at least in the rural context, never ever precludes pushing an activist agenda. In fact, assimilation provides one with a unique opportunity to do so. Whether this strategy works as well in big cities is doubtful, and strategically it would be opposed by many there, but in the rural backwaters of this great land of ours, it seems to be more than a good fit. Which is, ultimately, why I wear rubber boots now - rather than the Doc Martens from my downtown activist days.

This article first appeared in the literary magazine nomorepotlucks.   All photographs are copyright Bob Leahy

I first came across the work of Paul Gallegos through Twitter. (He’s @pauly1999) Paul uses social media voraciously in support of his advocacy for people living with HIV and the need for testing of those who aren’t. One Twitter trail led to another, which in turn led me to find a story about Paul  in a Palm Springs journal.

The bare bones of his story are this. In 1999, Paul already had years of heavy drinking and drug use behind him. In preparation for a construction job, he’d decided to get a physical. The results of a routine blood test sent him and Kelley, his girlfriend of five years and expecting a child, into shock. Paul was HIV positive.

He spiralled, his drinking getting heavier, leading to trouble with the law and jail time.

While Paul was still imprisoned and support seemed unlikely, Kelley searched for help and found it in the Desert AIDS Project. After being released he has devoted himself to outreach work, including public speaking and regular stints on the sidewalks in the hot desert climate of Palm Springs.

The story seemed so intriguing and Paul such a remarkable guy, I contacted Paul to see if he would do an interview for PositiveLite. He readily agreed. Here it is.

BL Tell me a little bit about yourself. You live in Palm Springs, California, right?

PG I'm unable to work. Married, with four kids and one on the way. I live in Sky Valley, about 10 - 15 miles NE of Palm Springs.

BL I was intrigued by a picture I saw of you on the internet, standing on a sidewalk holding a placard promoting HIV testing. Whose idea was it for you to do that?

PG I got the idea when driving home one day from the doctor and saw different types of people holding signs for businesses or even the homeless.

BL It’s called the Intersection Project, right? I like that name. It works on several levels. But tell me what it is you want to achieve.

PG I want people to know that this fuckin’ disease is out there and they should think about getting tested, to know their status. I don't want to see anyone go through what I have gone through in the past 12 years.

BL Now Palm Springs can get unbelievably hot. I know, I’ve been there. Isn’t the heat an issue for you standing out there on the sidewalk?

PG I don't think about the heat, I think about the hundreds of people I'm trying to reach out to.

BL What kind of reaction do you get from motorists or passersby?

PG Some smiles, some dirty looks, thumbs up, people honk at times, or they just look away as if I were not there. I've had a few people stop and take pictures.

BL I see you mentioned in another interview that you have neuropathy. ( Me too.)  That must make standing harder. Are you taking anything for it that’s working?

PG I'm allergic to neuropathy meds, because most are used for anti-depressants. They give me pain meds and I also smoke medi-juana.

BL You’re very public about your HIV status. Was it always that way?

PG  No. You can say and try to get bad with me all you want, but don't fuck with my family! I didn't like the treatment my wife and kids got, so we kept it a secret until a couple years ago.

BL What made you decide to come out about being HIV positive?

PG The stigma surrounding HIV/AIDS. Was it an easy thing to do? It was very hard to do, I talked with the wife and kids first; once I had their support, it was on. How did people react? You have friends and you have those you thought were your friends.

BL You’ve had a pretty difficult past life – drinking, drugs, prison. What was it like being in prison with HIV?

PG That's a whole different interview, but I will say this, I was called names, horrible names, they wanted my life on the line not theirs, they figured I was gonna die anyway, MOTHERFUCKERS!

BL Were you out to other inmates?

PG Segregation is against the law, but those of us with HIV/AIDS were put in a prison inside a prison, isolated from all other inmates. Other inmates were afraid they could get it from us through the air vents, stupid fucks. Getting (HIV) treatment is hard; they will not give you the medication you are on no matter what; it's a long process before you get any meds. It took me about 3-5 months before I got mine.

BL Was it prison that put you back on the straight and narrow or something else?

PG I would say prison, I saw a lot in prison. The worst thing was to watch guys that had AIDS die slowly, with no family or help from staff. They were there one day and gone the next. Broke my heart.

BL You are a straight guy, with a wife and kids, whom I know mean a lot to you. How do your kids deal with a dad who is HIV positive?

PG My kids are constantly worried for me, they help me with whatever I allow them too. They really hate to see me get sick. I got pretty sick earlier this year and my kids thought I was gonna die. As a father it makes it really hard to see them worry for me, I always try not to let them see me sick, but they always seem to know.

BL  And your wife, Kelley. I’m guessing she’s one of your biggest supporters, right?

PG Without her I could not fight alone, she supports everything I do 100%. I probably would'nt be here today without her support.

BL Some people say HIV is the best thing that ever happened to them in that it allowed them to take stock of their life and make some needed changes. Do you agree with that?

PG No, I don't think we should wait for something bad to happen to us.There are plenty of people out there that are willing to speak about their lives so that others will take caution in theirs.

BL One last question, Paul. What makes you happy?

PG Spending time with the wife and kids, taking photos; if I had a bike cycling would be one, even if I still had a motorcycle I would go out cruising. I really enjoy reaching out to the community in any way I can. I have done speaks at high schools, juvenile halls, on World AIDS Day, Palm Springs AIDS walk and some private events. Got to get the word out! Also just because there are meds people need to think about the consequences from this disease and the meds too. 

BL Anything else you'd like to say, Paul?

PG If I wanted to add more you and I would have to get together and write a book. I have done speaks and the last speak I did was last year at the Palm Springs AIDS/5k run. One thing I spoke about was how HIV is a HUMAN disease and not GIV - a gay disease. I have many gay friends and it did not offend them. My point is that, in and out of prison, I have been called names for being HIV-positive, names I would never use. I get tired of people always wanting to blame someone else for their actions. What happened to me was my own doing and I blame no one. I'm not out to offend anyone but to get the word out that HIV/AIDS is still out there and people should be safe in what they do. 

PG Thank you again for everything. I want to take this message as far as I can and with all the support I can.
 

First some disclosure. PositiveLIte is in something of a unique situation. Because of it’s almost full-time on-line presence, it knows which players use social media and which don’t.   It knows the stars who use it to the hilt – I could name off a long list – and those who haven’t got their feet wet yet – I could name off a long list of those too. But I won't.  Let's just say it's a very mixed picture right now, but in truth getting better by the hour.

Now, I like to think I know my way around social media. I’m no geek – well perhaps a little - but I’ve maintained a blogging presence for almost a decade. The three thousand or so posts that are out there with my name on them represents a LOT of time spent on-line. So I’m sheepish about admitting I’d missed out on seeing an important on-line article on the topic of the use of social media in AIDS Service Organzations. I missed it despite being on-line something like twenty-five hours a day – or at least it feels like it.   (Did I tell you I have no life?)  Anyway, here’s what I missed. It’s CATIE’s review of what’s out there. Their article “ASO’s Go Viral” by CATIE staffer Melissa Egan appeared in the Winter 2011 edition of The Positive Side. It’s a great primer, naming names of those ASO’s who are making an impact on-line, and providing useful information to those still to venture forth. Just what is needed, in fact

Of course I can’t resist mentioning what Melissa says about PositiveLIte : ”A vital and energetic community of HIV-positive bloggers can be found at PositiveLite.com, a website by Toronto’s Brian Finch, whose vision has created a robust roundup of resources and personal stories. Finch shares his experience of everything from improv workshops to facial fillers with honesty and humour. Each contributor to the site, aimed at positive gay men and their friends, writes with their own unique style and personality.” Thanks Melissa. I couldn’t have said it better myself. (I’ll pay you on the way out, OK?)

Anyway, I encourage folks to browse through the article, and see who’s doing what. The work documented there is impressive and CATIE writes approvingly of what’s being done, as they should. But is it a case of the glass being both half full AND half empty? I’m talking about the missing names now, the agencies who have yet to take the plunge in to the wild and wacky world of social media.

Here’s my own personal view, and I’ll be blunt. Any ASO that isn’t using social media to reach its client base and those in need of prevention services, particularly youth, or isn’t using social media to distribute its own news and to tap in to the news of others is pretty well missing the boat. It’s not performing to the kind of potential that technology permits in 2011. And it may well be the role of techno-savvy clients and others to point that out to them.

On a related note, I’ve talked in the past about how Twitter is steadily creating knowledge "haves and have-nots". It’s my belief, in fact, that agencies who don’t use Twitter are missing out on the knowledge exchange bonanza that is going on as we speak that is keeping their social media-savvy sister agencies better informed and thus better able to serve their client base.

But let’s be fair, there are some real stars out there too. The CATIE article is a good starting point for identifying them. Or, perhaps more accurately, identifying them as at a few months ago; the situation evolves daily. That’s the internet for you. Late adopters would do well to pick the brains of those on the list, pump them for ideas, visit their sites, read their tweets and see what needs to be done to get dry feet wet.

To those not using social media I say do it soon, please.   This may sound like an info-mercial. But under-served youth in your area are on-line now, waiting to hear from you; so are many of your clients. Don’t disappoint them.

There are many defining moments that occur when one first moves to the country. The first and perhaps most defining of all is when the empty moving van pulls out of your gravelly rural driveway. It has just deposited all your worldly possessions in to what smells, looks and feels like a distant outpost in another world. It is a moment of second guessing (was this idea really so smart?), self doubt and above all, finality.

The second defining moment comes next day when you realize that your new community of choice doesn’t just smell, feel and look like another world, it is another world.

The third defining moment comes only hours later. You decide to go in to town, in my case a village of 700 people. It’s a farming community situated two hours east of Toronto. You check out the local diner. It looks friendly enough, and the “famous home-cooked meals” sign above the door is inviting. But you step through that door, and all heads swivel, turning to face you simultaneously. You flashback to the scene from “American Werewolf in London” where the two American tourists enter the pub on the hell-like English moors. It’s eerily similar. So that third defining moment comes with the question “will I ever, ever fit in here? And if I do, how will I do it, because these people don’t look like they like me.”

That third defining moment, and the question it raises, becomes all the more pertinent when one is an out – and outspoken - HIV-positive gay man. Because the folks in the diner, and on the streets and at the post office look very, very straight. I’m guessing they’ve never used the letters HIV in that order in their lives.

Now the idea of queers moving to the countryside really hasn’t been a radical one for a couple of decades. HIV-positive queers? It’s something that’s received less attention, but I’m certainly not the first. Rural living represents, after all, a healthy alternative for urban poz folks seeking fresh air, a less stressful way to live, and an environment that’s relatively germ free - where, in other words, your immune system isn’t continually under siege. Balanced against all this, the country is also deemed to be hostile. The popular notion is that the stigma surrounding HIV that presents itself in cities is magnified tenfold outside of them. Perhaps as a result, and the fact that rural poz folks often keep quiet about their status, migration of poz gays from cities to the country is not something that’s made its mark. Nor particularly has the notion of rural gays, and rural poz guys in particular, being thought of as agents of change.

I wanted to change that. Just as Middle America is perhaps the last frontier of social justice issues to our south, rural Canada is where the rubber hits the road north of the 49^th parallel.

There are two distinct models, I suppose, for changing the world and advancing a gay/poz rights agenda. In a nutshell, one is by exposing one’s differences and celebrating them – loudly and with the pizzazz that queers are, let’s face it, particularly good at it. The other is by trying to fit in, to be unobtrusive, to make the point ”look, we are just like you, we won’t hurt you or molest your children; accept us as your equals.”

It’s essentially the assimilation vs. exceptionality debate that had its heyday back in the 90’s with people like American writer Andrew Sullivan annoying the heck out of “the sluts” who championed more visible, louder and - yes - more flamboyant ways of making their presence felt. That debate died a death, having gone largely, I think, in favour of the sluts. Meanwhile, the assimilationist camp was viewed about as warmly as Log Cabin Republicans by the ultra-left. But, even today the same debate erupts after each Pride Parade; those on one side deride the spectacle of too much leather, too much flesh and too much acknowledgement that gay men actually are sexual beings. Those are the assimilationists speaking, of course, and they would rather we ditch the nudity, behave ourselves and just try to fit in. Which, incidentally is the view, I imagine, of many heterosexuals, but that’s beside the point.

I mention the assimilation thing here, because every gay man who moves to the country has to consider whether to go that route, consciously or not. Every poz gay man has to consider it all the more.   And for every poz gay man who considers himself an activist, like the writer, it becomes not only a crucial decision, but also a strategic one.

Forgive me if things take a turn for the biographical here, but it’s necessary to leave the politics of oppression aside for a moment to paint a real life picture. So, here’s my story. Closeted poz gay guy working in the most ivory of ivory towers gets diagnosed HIV positive, out of the blue, in 1993. Panics, but keeps quiet about it. Sees “Philadelphia”, does a Tom Hanks turnaround thing, comes out screaming “I’m gay and I’m poz”, and immediately bails out of the system. Goes on long term disability, exchanges pin-striped suit for black t-shirt, jeans and Doc Martens, joins the AIDS Committee of Toronto. Activist career escalates sharply. Two years later, showing early signs of dying, wants to live healthier, less stressed-out; moves to the country. Adopts two dogs, later to become three. Takes up art, later photography.  Learns to make pies. Health improves dramatically.

Thirteen years after giving up downtown Toronto living for the land of cows, here’s how it’s all panned out.   I eat at the diner, the one where all the heads turned our way, almost daily. I go to church suppers regularly too, even though there’s not an ounce of religion in my body, because I like the people there. I’m at almost every community event going, in fact. I’m on the executive of the local business association. I say hi to everybody on the street: I know their names and they know mine. I even dress l a lot like them. I’m the village photographer. I sell art cards in local stores featuring my three errant dogs in cute poses. People like them, and I’m thinking they like me too. In short, I have, in fact, assimilated nicely.

But here’s the thing. Everybody knows I’m an HIV positive gay man. They ask how I’m doing, seem concerned if my colour’s off, or I’m limping through the nerve damage in my feet (it’s called peripheral neuropathy, and it’s a drag) that’s a side effects of the HIV meds that I take. They applaud when I speak about HIV in their schools, in their service clubs and to their volunteer groups. They’ve read my story in the paper, too, seen me on the TV news on occasion, and know about my activism work across Canada, about my involvement in prevention work, about the provincial campaigns I’ve worked on, and been a spokesperson for, appearing as one of the faces of HIV in rural Canada. Some of them read my blogs too, where I share everything. I harass my (conservative) member of parliament about inadequate AIDS funding. I send angry letters to the local press. None of this seems to faze my neighbours.

I also get lots of hugs. More on that later.

To be continued. All photos by Bob Leahy. This article first appeared in the literary magazine nomorepotlucks.