Recently I had the opportunity of hearing Herb Schultz from the United States Department of Health speak at a medical update about healthcare reform and what it means for people with HIV. The one thing that stands out for me is when he said “you are entitled to your own opinions, but you are not entitled to your own facts” when it comes to healthcare reform. He was referring to all the noise we've been hearing about healthcare reform here in the United States.

He was on a panel with other distinguished people presented by AIDS Project Los Angeles designed to help people with HIV understand what healthcare reform means to them. Joining him on this panel was Julie Cross from the Office of AIDS Policy and Programs

They each had very convincing presentations and by the end I felt that I had a better or at least a more clear understanding of what healthcare reform means and how it will affect people with HIV and by the time it was over I had better, or at least a more clear, understanding about what healthcare reform really was. However I asked what measures were being put in place to make certain that people hardest hit by HIV and AIDS would not fall out of care or fall victims to potential scams by people, places and things offering to take over handling of meds and insurance billing. I even gave them examples of people I do HIV peer support for who had in fact fallen out of care for this very reason, but the only answer I received was dead silence.

Until now I've never had any concern about falling victim to such scams because I access my care through the Ryan White Act. I do not have any sort of insurance that can be billed. However with all the changes coming,  I will now be required to pick a healthcare plan and this is now something I MUST be concerned with.

Recently I started taking meds to help my body build its resistance to TB. After 29 months of homelessness and being exposed to it by living on the streets, in shelters, missions and transitional housing, my defence is low. This will help me build it up.

I also had to apply for ADAP which was pretty simple, but for me the problems started when a company offered an incentive to allow them to handle my pharmacy needs. At first, I saw no harm in this until I started asking questions as to why I had to release all my medical records to them and I needed to allow them to make all medical decisions that I make with my doctor. They even offered to help me get into the new plans along with helping me with any housing authority issues I may face.

It all sounded too good to be true and at the end of the day it was. My friends and I who are also HIV positive had started talking and in our conversations we discovered that they too were offered all sorts of things to move their HIV care, even claiming to be better than the Veterans Affairs.

We all felt harassed and one friend said they felt “violated” and “uncomfortable” with this company and how they had aggressively pursued all of us even after they said “no thanks” and in my case after I asked to have my meds changed back.

Today I find myself lost in a system with no answers and my medical care is now in the hands of some company who only cares about getting the right to bill county, state and federal programs top dollar for my HIV meds. I've been dealing with this for two days now and today I looked up and discovered that I have been under so much stress that I've now missed two doses of my current meds to treat my resistance to TB.

At the end of the day, when it is all said and done, we all have the right to pick who handles our HIV care. We have the right to say no and we have the right not to feel pressured, threatened or bullied into changing things in our healthcare that are only in the interests of making a profit for our sickness that we must live with daily.

So again I'm left with the question of who protects people at greater risk from companies who will take advantage of the fact that many people with HIV are also low income and struggle each month to make ends meet? Who will protect us from people, places and things that will promise the sun, moon and the stars, simply to get control of billing for HIV meds?

I'm sure this is only the beginning of things to come when it comes to caring for, or should I say pretending to care, for people with HIV and AIDS. In many ways what has happened to me sounds, looks and smells like the very same type of predictor type practices aimed at senior citizens.

People with HIV have enough to deal with, enough to worry about. We should not have to worry about anyone else taking advantage of us, pressuring or threatening us. My faith in God is at the center of all I do and in this moment I'm placing my full trust in God because he has never failed me yet.   

I chuckled because it was this kinda cheesy track tailored after Duck Sauce’s “Barbra Streisand”. I bet they had no idea that a couple months later she would no longer be with us. Ironically, just as when the announcement came that Michael Jackson had died, I was in the studio working on music. It sorta knocked the wind out of me. I mean....I know it’s all over the news and the internet, but it just didn’t seem real.

Jon Stewart of The Daily Show ripped CNN a new one for sending a reporter on the streets to get reactions to the news of Whitney’s death. Over in the UK, iTunes raised the prices of of her music a few hours after her death. But the most surprising thing I saw was Wendy Williams’ segment on her show where she broke down and said after that moment she was not gonna say another word about Whitney’s passing. Okay....I have always dismissed Wendy as a gossiping mouth piece of daytime television, but my respect for her went up ten fold after watching her on YouTube.

And of course the jokes about Whitney started within the hour of the announcement. Even though I knew they would be coming and be very vile, I still wasn’t prepared for some of the ones that popped up on facebook.

But as the week went on, it seemed to get worse. And then came the day of the funeral. Aretha Franklin doesn’t show up and gave an excuse of leg spasms when the real reason was that she had fought with Cissy Houston about an interview she gave to Al Roker in NYC where she blamed the parents of drug users. The sad thing was instead she did her concert that night at Radio City Hall where she watered down her tribute to Whitney by adding tributes to Nick Ashford and Don Cornelius. You know...the more I learn about Ms. Franklin the less I like her as a person. Whitney’s aunt, Dionne Warwick threw some shade at “The Queen Of Soul” by introducing her at the funeral only to point out that she wasn’t there. And then there was the mess with Bobby Brown showing up with nine people to the funeral when there was very limited seating. He eventually had to leave after being asked to moved his group several times as the ushers tried to accomodate his tribe.

I think the most beautiful tribute was by Kevin Costner. His recollection of his time on the set of “The Bodyguard” with Whitney left me feeling that there was so much about her that we didn’t know. In his story her vunerability and doubt made her more human than I had ever noticed before.

All I can say is....we just finished Black History Month and in that month we’ve lost Etta James, Don Cornelius and now Whitney. I almost feel like our heritage and history is slipping right through our hands. An end of an era is upon us.

And while one diva leaves us, another is making the biggest mistake of her life. Of course, I am speaking of Rihanna. What on earth is she thinking? Any kind of relationship with Chris Brown should have never even entered her mind. The message she is sending to young girls is so wrong! Rihanna has recorded a remix of her track “Birthday Cake” featuring Chris. The explicit lyrics are leading us to believe that they are bumpin' uglies. Measnwhile she makes a guest appearance on the remix of his new single, “Turn Up The Music”.

I predicted when he was originally arrested that it wouldn’t be long before he was back on the charts and all would be forgotten. But somehow I could have never predicted the fallout of this reunion. Some are saying that they are a couple again. I have heard jokes about Rihanna not being able to stay away from his huge talent. While there are all kinds of stories about him having gay sex with a songwriter named Martyn. And now there’s reports that Chris stole a female fan’s phone after she took a photo of him getting into his car. I predict that Chris Brown is going to implode. His bad temper and attitude is going to do him in. Plus I would say that he is in the same place where O.J. Simpson was. Everyone is watching and the law is waiting to put him behind bars. He is stupid for even going anywhere near Rihanna. And she must be too to think that young girls tweeting “Chris Brown could beat me any day” is a good thing.

Another big mistake over the past couple of weeks was Nicki Minaj’s Grammy performance. At first when she arrived at the event, I thought she was Lady GaGa. She was dressed in a red cloaked dress and on the arm of a Pope look-a-like. And then came the horendous exorcism of a performance. Her speedy delivery of lyrics and manic vocal attempts left everyone scratching their heads and wondering what just happened. But surprisingly requests for her new single, “Starships” started pouring in on my dancefloor. Honestly....I don’t get it! I think the song sucks. It sucks even more than her really annoying “Stupid Hoe”.

But the tracks that are really working me right now are the Jumpsmokers Remix of Jessie J’s “Domino” and the dBerrie Remix of Beyonce’s “End Of Time”. Great energy and deep grooves! Love it!

However, the verdict is still out on X-Factor’s Melanie Amaro’s cover of Aretha Franklin’s classic “Respect”. I’m not sure why Simon would have her do a cover of that song. There’s some songs that you just don’t touch. I didn’t care for Reba McEntire’s version back in the late 80’s. And even though Aretha’s version is a cover of Otis Redding’s original, she made the song her own. No one has done that since.

And I was really upset to find out that Nicole Scherzinger is being replaced on X-Factor. I mean...c’mon Simon! It was nice to see someone actually stand up to you and tell you their thoughts. He never respected her from the beginning. He wanted Cheryl Cole to make an impact on American TV, but they didn’t see huh. So, now there’s talk that Janet Jackson and Britney Spears are being courted to fill Nicole and Paula’s seats.

 Meanwhile check out this free download from DJ Relentless

There’s a new approach that’s taking place in HIV prevention and support programs, particularly those focused on gay men, that’s based on supporting us in maintaining good health, particularly good sexual health, by emphasizing our strengths and resilience rather than focusing on risk behaviours and pathologizing our weaknesses and vulnerabilities.

Here on PositiveLite.Com, we’ve featured several programs that utilize this new approach: It’s Hottest at the Start; The Sex You Want;  GPS (Gay Poz Sex); Spunk;  and Totally Outright. 

So I thought it was timely to learn more about the thinking behind this new approach and to understand more about the concepts of risk and resilience that underly it. To help me, I recently sat down with Duncan MacLachlan, the manager of community health programs at the AIDS Committee of Toronto (ACT). 

John McCullagh: Welcome back, Duncan, to PositiveLite.Com. I’d like to start by asking you to describe risk for me. When I think of risk, I usually think of things that could be dangerous, like smoking, for example, or drinking and driving. But it’s more complicated than that, isn’t it?

Duncan MacLachlan: Risk is complicated, John, because it always exists in a context.  It’s often oversimplified. Risk for gay men has, for the most part, been narrowly defined in terms of vulnerabilities. Things like HIV and other STI acquisition, or mental health, issues like depression and anxiety, or substance use. These vulnerabilities are real, of course. They exist because of things like stigmas, trauma and poverty, but they aren’t the whole story. Gay men know this. In the arena of sexual expression, we’re motivated by things like desire, pleasure, intimacy, connection and love not merely the fact that we may be challenged by anxiety or loneliness.

John: I hear you saying that risks don’t exist in a vacuum, they always have a context. That means, I guess, that we should be cautious when judging our own or someone else’s risk behaviours. And yet, that’s not the way, until recently, that we’ve done HIV prevention work. Instead, we’ve said, “This is what you should be doing” - like “Use a condom every time” - which was based on the theory that we’d all make rational choices when faced with risk.

Duncan: Exactly. We all know that our behaviour isn’t always rational. So this idea that we’re free to chose in every situation and that if we’re armed with information we’ll always make “good” decisions is false. Yet, while those of us doing prevention and education work with gay men have moved beyond this simplistic notion a long time ago, it still persists in society at large. It exists in our community as well; the demonizing of bareback sex is an example.

John: Duncan, how would you say we can best overcome the odds and challenges of the risks we face in our lives?

Duncan: Wow, John. That’s a big one! Here’s part of the answer. My studies of psychology teach me that it’s positive reinforcement rather than punishment that motivates us. Again, we all know this intuitively because we’ve experienced them both.  I’m a big believer in love and compassion, both at an individual level and a community level!

John: So tell me a bit about gay men’s resilience. It’s more than just coping isn’t it? 

Duncan: It is. As part of ACT’s current gay men’s resilience campaign, we asked guys what resilience meant to them. What they told us was that it meant bouncing back from a challenge and gaining some aspect of strength from the experience. I think sometimes resilience is coping, but, as you say, it’s often more then that. What’s really interesting is the notion of protective factors - characteristics that counter some of the challenges gay men face, like homophobia. Protective factors can be enhanced. An example Amy Herrick and others have identified in research is shamelessness or sexual creativity.  ACT’s Pig Sex Project (for gay guys who identify as “sex pigs” and who like to have raunchy sex. - Ed.) nurtures these protective factors by providing an environment where guys are affirmed and valued – our slogan is “It’s your choice” - rather than judged for their sexual expression. It’s also an environment where the guys share their strategies for risk reduction with each other because they feel safe to do so.

John: Can you give me some other examples of how we can build resilience.

Duncan: One of the most useful ways of considering the development of resilience programming, or evaluating existing programs and supports for their resilience effectiveness, is a model called the 7 C’s of resilience. These 7 C’s of resilience are: confidence, competence, character, contribution, coping, control, and connection.  People have better health outcomes and a higher quality of life when these things are nurtured and this can be easily measured. At ACT, we are using the 7 C’s of resilience to enhance our capacity to assess the effectiveness of our programming in building resilience.

John: So, Duncan, if I’ve understood you correctly, you’re talking about an asset-based approach to health, focusing on our strengths instead of our weaknesses, on our resilience instead of our deficiencies. That’s very different than talking about condoms, than talking about disease, isn’t it?

Duncan: Yes, although an asset based approach that is rooted in resilience doesn’t mean we don’t talk about condoms or disease. Using condoms might be an important part of many gay men’s resilience.

John: So give me an example of how focusing on our assets, on our strengths, correlates with reducing risk behaviours?

Duncan: Sure. Let’s talk about sex, sexual creativity for example, which is another of the protective factors identified in Amy Herrick’s research. More and more guys are talking about viral load with each other. We now know that having an undetectable viral load reduces risk of transmission. We’re not sure by how much, but it makes a difference. Our willingness to push the boundaries of sexual pleasure enables us to explore the utility of a great variety of cock and ball “accessories” that enhance our ability to stay hard, facilitating condom use.

John: Duncan, you’ve really helped me understand why building on our successes is ten-times more compelling than trying to build on our failures. Because we all want to be successful and healthy. Thank you so much.

Duncan: You’re welcome, John.

Reference: Herrick, A. et al. Resilience as an untapped resource in behavioral intervention design for gay men. AIDS Behav (2011) 15-S25-S29

“Give up the battle of fighting and find freedom in the shackles of service.”

Lately I have been practicing Ashtanga Vinyasa yoga in a Mysore-style setting six days a week, working out three times a week and teaching about 10-15 yoga classes a week, some in a heated environment and some not.  I love my life and my job, and the joy of being strong and active at this point in my life, HIV+ or otherwise.  It’s a real blessing.  But it’s physically challenging.  Work, love, joys all feel like chores sometimes – a big hassle – so much that it makes me want to rebel against my own great life.  But I have found a way to take some of the edge off.  And it’s not exactly what you’d think.

A year after I was diagnosed with HIV, I began what was to become my longest living relationship with another living thing - with my dog, Brenton - or more formally – Brenton Cornelius Ulysses Uy.

I have to be honest; I hated that dog for many years.  I happened to come by him accidentally through a series of events and now that I had him, I really didn’t want him.  I was never a dog person.  But here was this dog that needed food, and attention, and walks.  This living creature required my assistance daily just to poop. 

The reality of my health situation was really starting to set in during this time. I wasn’t really working at my full potential and my thoughts were often of self-destruction. I wanted to get everything over with and move on because life wouldn’t be so grand and most likely painful – but there was this life that needed me.  The only thing I could fully commit myself to was keeping this innocent life alive.  And so it began.

I put up a picture on the fridge and the back of apartment door with a picture of his face and the caption that read “Do it for him.”  I also had one at my desk and in my wallet.  I needed the reminders.  It was in these darker times of life, that looking back, I had small rays of light.  Although I hated and loathed doing it, I trained that dog, kept him fed and well maintained to the best of my ability.

When I had full blown AIDS for the first time, I was living alone at 27yrs old in a bachelor apartment with just him.  There are days I would cry and scream and curse myself and him for being in my life.  But the mantra “Do it for him” kept me alive.  He kept me alive.  Even my mother will attest that if it wasn’t for his presence, I probably wouldn’t be here today. 

I haven’t thought about this for sometime but was made more aware of it over dinner recently with a good friend in talking about my daily routine.  Sure I am healthy and strong and not nearly as maniacal as I used to be, but this same intent exists.

In yoga, there’s a word in Sanskrit we use, sankalpa, which means "will, purpose, or determination." To make a sankalpa is to set an intention—it's akin to a New Year's resolution but deeper.  Recently, I posted an article about my sankalpa for this year on letting go.  But I have found this to be my daily one – service.  A lot of things I struggle through some days like everyone else.  I have mentioned my challenges with food and a bit of my daily regimen.  It’s not always easy to do.  My buddy Elias was pointing out to me recently about a few of my male colleagues and the work they do, and practice etc and reminded me of a very important point about myself - that I can stand alongside them at the same physical intensity despite 15yrs of being HIV+. 

I have never been an activist but I do believe I have a message.  The actions of my life are a reflection of it.  I honestly cannot do this by myself.  I find the work and effort daunting and some mornings I feel like I just want to lay in bed all day and sleep for five days.  But I get up.

In my morning practice, just after the morning mantra (chant), I whisper softly to myself “Do it for them.”  With my eyes closed, I think of my family, friends, students, people I’ve met or talked with.  Usually only a few images of people’s faces I’ve recently had connections with will come into the forefront of my mind and I lock them in place.  This practice is hard.  Facing each day is hard at times.  But it’s easier if I do it for others.  If I can keep myself in better shape, practice more, eat well and get enough sleep, then I can be at my maximum for when help is needed for others.  I’m just like a fireman, except without all the sirens, hoses, and 911 men! LOL! 

Does it really work? I don’t know. I’m still here right?  Perhaps there is something that has been a struggle to get through.  Some job or task or project that is hard to face on your own.  Is it possible that by doing it, there may be a benefit to someone else?  And isn’t it a really cool feeling when you can help someone else out, be it a stranger, or friend, or dear loved one?  Then dedicate the job or work to them.  Make that 9-5 grind be about that special loved one, be they human or non-human.  Even if you hate the idea of doing it, give it a try, it may surprise you.

Since someone else has said it better then me, I will leave you with his words:

“The best way to find yourself, is to lose yourself in the service of others” –Ghandi

Metta.

You can read part 9 here.

The morning of March 12 rolled around fasterer than I hoped for. Even though we all just went through an earthquake that changed the GPS of Japan, caused the Earth to shift on its axis and left tens of thousands missing and feared dead, the show must go on. I had recently started working for a wedding outfit in Tokyo  The wedding was still on. Flowers, food, gifts, and guests were ready for the big day and cancelling was not an option.

With three hours of sleep I was out the door. On my way to the station I was greeted by people who likely spent the night out somewhere in Tokyo. Everyone’s face,  I'm sure including mine, was just blank with lack of expression and life.

At the hotel where the wedding was, I was greeted by all the staff.  We shared our stories, and it seemed I had walked the furthest the night before. Others were at home during the quake. We all had big stories to share, talking over each other like a bunch of hens in the yard.

It was a stretch for all of us to put on a "Happy Wedding" for the couple and their guests.  Not knowing what to say to the couple, I took them by the hands, looked them in the eye and said, "Yesterday was a horrible day. But today is your day. It's a Happy day." They both looked at me with appreciation. 

It was a morning wedding and I was home by early afternoon and was finally able to get through to my parents on the phone. They shared how so many people had called, concerned for me.  We talked for about an hour. After that I thought I'd check my mail and FaceBook. I had around 200 notices, replied to some comments, but found it easier to click the "like" option with the little thumbs up.

The days that followed were filled with aftershocks, 1-3 an hour. There was a feeling of constant movement. I did some clean up, but I held back on putting some things back in their proper place due to the constant shaking and the threat of very large aftershocks.

After the fourth day, I felt I was done with the drama of it all and I wanted to disconnect from the TV, stories, and the news.  I decided to go to the gym. I was greeted by a sign that read "closed until further notice". There was just no escaping.

The rhythm of Tokyo was so off that stores were finding it difficult to get restocked. Even convenience store shelves were going bare. I decided to go to a local supermarket and wait outside until it opened. So many people had the same idea.. After waiting for an hour,  I was let in. An announcement  “take only what you need” was being repeated constantly.

Once again I was amazed by the Japanese people. No one was overfilling their carts or moving around in a frenzy. People were very calm and organized.  The store was the barest  I had ever seen, but there was still plenty of goods to chose from. I would later learn that some things that were hard to come by (that didn't cross my mind) were diapers and feminine products. Many more things in the days and weeks to follow would become even more scarce.

For the first time since last September, my own drama of being diagnosed with AIDS and  losing my job didn't seem all that bad. It was easy to forget about all my problems that I had struggled with just a few weeks ago.  So many people had lost their lives, or lost loved ones, so many had lost their homes.  Who was I to complain? I had my home, food, and my health.

However there was a new threat now. Reactors at a nuclear power plant in Fukushima had been compromised in the quake. Now we were all living with the threat of radiation.

What did this mean for people living in the Tokyo area? We were being told that we were safe, but some embassies,  like the French,  were telling people to get out of the country. I too was contacted by the U.S. Embassy.

The greater Kanto area had to scale back on its power consumption. For us, it became known as Setsuden. The whole region was set up into groups and there would be rolling black outs. Bright and illuminated Tokyo with all its neon and JumboTron TVs had become darker, almost eerie. Some trains had removed many of their florescent lights and most station escalators were turned off. Tokyo had become a strange place with an ominous feel about it.

I went back and forth about leaving the country for days that turned into weeks. My parents were ready to fly me home. I was getting lots of pressure from friends and family that were State-side to leave Japan.  Even my own doctor was ready to give me a two months prescription if I decided to go. The thought of being separated from my doctor and care team didn't sit well with me, though.

April was upon us and I finally came to a decision. I would not go!

I had been through so much since last September. Super sick, diagnosed with HIV, then finding out it's AIDS, getting  fired from my job , losing my money, losing friends, dealing with depression and suicide. Then the earthquake, constant aftershock, radiation threat, and more.

I knew if I left, I most likely would soon return to Japan. The thought of walking hand in hand with the rest of my Japanese community seemed to be the obvious choice. (As a result  of making some friends in Japan on twitter I became part of  a group called "Gaijin Heroes." That story will come later. )

So I stayed. There were still a lot of aftershocks, some radiation, but nothing too serious. April turned into a great month. The cherry blossoms were stunning as always, but the droves of people out to party under them were much more subdued than in years past.

I had to go back to the doctor in early April. I was a bit apprehensive about going back to the place where I had experienced the earthquake. When I got the results of my blood work in May, my CD4 was level. The stress of my personal issues of February, the stress of the earthquake and  the weeks that followed in March were not friendly.

However, I was feeling pretty upbeat.I was excited about spring, because I knew I could start one of my favourite therapy treatments -  gardening.

Spring had sprung! And me with it!

***********************************

While writing Part 10, I learned of the passing of Whitney Houston. Feeling slightly nostalgic and maybe a bit cheesy I thought I would watch "The Bodyguard."  In the movie, her character Rachel says  "I'm afraid, and I hate my fear."  This lwas something I too had felt. I realized back then I could not live in fear. I could not let fear control me or influence my decisions. I had to cloak myself with courage and bravery. It's not always easy, and it's something I still need to work on from time to time. But it's something that has helped me in this journey.

In the movie, Whitney’s character performed at an event for AIDS research. I was reminded of all that Hollywood and the entertainment industry has done for HIV/AIDS, the millions of dollars they have donated for research and people affected by the disease.

For this I'm super grateful. To them I want to say "Thank you and God Bless! I may be alive today because of your generosity."

I'm sure they do not hear  “thank you's" enough.