Thursday, December 12, 2013

Christmas Wish

Dear Santa
I know you're probably making your list and checking it twice but if it's not too late I would like to add several items to my Christmas list. Now I want you to know I’ve been a good boy and taken all my HIV medicines so I think I'm justified in making several small requests. Besides you still owe me for the time I asked for an Easy Baked Oven and instead I got an etch-a-sketch. Yes I know that was many years ago but maybe next year I can receive the gift of letting small things go. So as you look at what to load up in your sleigh and keeping Rudolph’s nose warm, if you can just hear my cry as I come to you with my wish this Christmas.

First thing I ask for is a huge table that can seat all. I ask for this as I know that there will be many observing this season alone having being rejected from family and friends because of their HIV status and sexuality. This season is supposed to be one of merriment and joy but the sad reality is that it’s a reminder of how individuals don’t have a place at the table. I know this feeling all too well as I once felt I wasn’t welcomed at the table and if I was, it was with a cautious breath. But no one should have to feel alone anytime of the year and no one should have to be shunned because of their status. So while you’re at it if you can bring as many chairs that will fit into your bag for all those who feel they don’t belong and by coming together they can see family isn’t always just your blood relatives but the many people who come together for you.

My second wish is for increase funding of HIV/AIDS. I think someone opened the wrong gift and got the impression that the battle of HIV has been won and see no need for increased funding. The war chest you gave them many years ago when toys soldiers were painted white have seemed to been shut when the paint on the soldiers fell off and the exposed colors of the black and browns started to come through. Maybe Christmas came early for others but I know in my neck of the woods it's still Halloween as the scary reality is that people who hold the key to the toy chest have been blind to the fact that since HIV/ AIDS is manageable we can all relax and move on. If you have a mirror you can probably gift that as well so they can see that this is still very much an issue that needs immediate attention as needed services are being cut, especially services for people of color who are making up the majority of new cases. For this gift if you can allow me to open right away as we don’t have time to wait on this issue.

On my list I would also like to give a pair of shoes made of HIV stigma to the HIV negative community, especially those unaware of the impact stigma has on an individual living with HIV. Perhaps as they try on the unfamiliar footwear they will experience the uncomfortable steps many living with HIV have to experience. Give them roads of discomfort so that they can experience the real emotions of shame and rejection that comes with stigma. And the purpose is not to harm but create awareness. Make the soles full of lead so when they try to jump over the many barriers that block them from healthcare and services that can improve their life, they can relate to the hardships. But as stated before I don’t want this gift to be one of cruelty. So as they try to walk a mile in steps already taken leave them not with aches and pains but a better understanding of stigma and the need to end it.

While I'm speaking of stigma, if for one day you could give my brothers and sisters with HIV a tailored shirt free of stigma. Hopefully those who have been unable to do so can put this shirt on their back and truly know the freeing experience of embracing one self and how much richer their lives can be without living in the shadow of stigma. And as they prance in their new look they can look at their reflection and see themselves for the true god and goddesses they are. Make it a magic shirt that they can fashion into a parachute that glides them over the barriers that they thought was forever built in place to stop their dreams.  And while in the air let them know that their dreams are no longer grounded by their status but their dreams and goals are unlimited like the sky. Make this shirt of the finest material so they can wear it every day and no one can take it away from them.

Now I know my Christmas list is longer than most but If you have some room can you hand out picture books of knowledge to the young gay and questioning men in the community and let them know that their body truly is their temple and choices made in the heat of the moment can last for a lifetime. But don’t make it a book of lessons. Instead in that picture book have plentiful images of gay men not defining themselves by their physical attributes or sexual abilities in bed but flourishing by the healthy love they have discover with others and finding the love within themselves. Leave pages open so the young men can place positive pictures of themselves for others to see as they are our future. For some they don’t know what a healthy relationship may look like so overfill the book with snapshots of those images to guide the young men and let them know and experience the love that they may have not thought existed.  Give them bookshelves so they can create a library of books that open their minds and in the revealing chapters, despite the reports, that they are aware each one is more than statistical deficit numbers related to HIV. In fact the library room can be called, Teach not Preach.

So as I get to the bottom of my request I hope you don’t feel I’m asking too much of you. Based on the situation and the dire need it’s the only reason I ask. HIV has taken away from so much and so many it’s only fair I ask for something in return. I hope you agree Santa.

And finally if the elves have any tape left over from wrapping gifts, can you use the extra to cover Don Lemon's mouth. I'll pay you for that gift.

That's all and hope you like sugar cookies with rainbow sprinkles and chocolate milk. I'll have some waiting for you. And that is my Christmas wish!

Merry Christmas Santa

Tuesday, December 3, 2013

Happy World AIDS Day

This past December 1st which is known as World AIDS Day I had a chance to see acknowledgments from the online community as they reflected on the day. On my Facebook timeline people were emphasizing the importance of knowing your status, recognizing those who had passed from the disease and a reminder that HIV was still here and much work had to be done in reducing stigma. In the middle of all the messages were four words expressing their sentiments of the day but not in a way I was prepared to read. The posting from several different people simply stated, “Happy World AIDS Day.” What?!? Happy World AIDS Day? And this just wasn’t on my feed but others all well. The announcement sounded so festive and celebratory so right away my head went to one side and then the other as I was trying to comprehend the postings. Was there a rule in how we received the day set aside to reflect and remember those living and have died from HIV or was I making something out of nothing?  I think after a while of head shifting I had to ask myself what exactly was ‘Happy” about World AIDS Day?
Based on my personal knowledge about World AIDS Day it is a day to both acknowledge those who have died from this disease and a time to create awareness in the hopes individuals will seek to know their status to stem the infection rates. It is also an opportunity to get those who were exposed into some type of early health treatment. As a day of remembrance there has been so many near and dear to us who has lost the battle to this disease. People who were at the prime of their lives and suddenly taken away. World AIDS Day events happen on this day as people of different backgrounds, wearing a red ribbon and lighting a candle, came together as the commonality was the impact HIV had made in each of our lives. If you wasn’t infected you were affected as World AIDS Day brought renew focus on the topic and a call to arm for new soldiers to step in line to help battle this disease. 
And for those still on the fringes, providing them education and awareness and letting them know that HIV doesn’t discriminate based on race, sex or gender. And finally for those living with the disease, a coming together to say you’re not alone and don’t give up the fight. So why were we now announcing our happiness about this day?
 Now before I sound off I know that the online posters were not coming from a place of coldness or indifference when they typed those four words on their news feed, but I do feel they were slightly unknowledgeable in the choosing of their words. I’ll even go a bit further and venture to say that those who wrote the statements were HIV negative as I can’t imagine someone HIV positive coming anywhere close to declaring “Happy World AIDS Day”. 
The word itself feels like a festive occasion, one with balloons and confetti flying through the air as party horns blared in the sky. I was thinking maybe I missed something and on that day there was going to be a parade to honor the day. I could just see the giant red AIDS ribbon floating in the air as blue colored marchers dressed like Truvada marched to the beat. Even worse I thought that maybe I was missing out on retail sales that usually accompany such holidays. “Today only all HIV medications are half priced” or better yet “The first 100 customers get a coupon to be redeemed for 50 t-cells to help boost their numbers.”
I won’t hammer the point to much but maybe World AIDS Day has got lost in translation as the years have went by, enough so that it was the new norm to celebrate the day. Perhaps the impact of AIDS/HIV is lessened because it’s now a manageable disease and in our short term memory forgot it still is a deadly disease that affects and impacts ones quality of life. One may think all they have to do is take a pill but beyond the pill there remain related health issues that one has to endure. Not to mention the impact this disease has on personal relationships based on the stigma that accompanies having HIV. 
Also the last time I looked, in certain places such as job and housing, people with HIV face discrimination because of their status. And when it comes to the African American community, HIV has increased compared to other ethnic groups. And while the rates are rising in said communities, funding to prevent and educate has decreased with neighborhood HIV agencies having to lay off staff, reduce their programming and in some cases closing their doors leaving a gap in services.
But here’s the rub. After making my case on why it doesn't seem appropriate to say Happy World AIDS Day, my epiphany moment came when I asked myself why not Happy World AIDS Day? Being aware of the history of HIV/AIDS we sometimes forget there is so much to celebrate. Compared to years past we have seen achievements in so many areas. Take for example the medication AZT, the first prescribed medication for HIV. When it seemed that was the only option we now have a full menu of HIV medications that has made it possible for the disease to be manageable. Also I would venture to say doctors are more specialized to care for those living with this disease unlike the past when it was a mystery. Also public perceptions have shifted. It may not be where we want it to be, as stigma still prevails, but many nontraditional places such as the church and schools are having discussions on HIV where there was once silence.
 I think the greatest celebration is that now more than ever people are putting their own face on the disease and talking about their experiences, whether it’s blogging, reporting, writing, speaking and more creative ways. And through these telling stories others are made to feel that they are not alone. Can you imagine a black bald headed man sharing his health status of HIV twenty years ago? Based on how we saw people living with HIV in the past, the stories shared no longer operate in silence but in a shared space. And another victory is the word I have used constantly in this post ‘manageable’. If there is anything to celebrate is that HIV is no longer seen as a death sentence as it was before and with adherence to proper treatment, people are living long full lives.
World AIDS Day will still have its significance but what is wrong with celebrating our victories. As soldiers in this war what harm is it to take one day and lay down our arms and embrace won battles? As people gather together to commiserate the day we still need that moment no matter how brief to appreciate the work we have done and to remind each other that although we are still at war, to not give up or give in. HIV has taken away so much why must it steal our ability to be joyous even for one day?
So taking all that into account there is a reason to say and embrace World AIDS Day. Yes it may sound offensive but understanding the progress that has been made I find the celebration and the attitude to say to anyone who hears, Happy World AIDS Day!!  


Wednesday, November 6, 2013

Learning to say No

Learning to say no

It was about 3 in the morning when the phone rang. For most people when the phone rings at such an early time it’s to announce bad news of a loved one. For me I knew right away that the call was for a different purpose. The sound of the ring seemed like a crashing of pans on the floor as it filled the small studio space, wondering if I was waking the neighbors. In trying to decide whether to answer the phone I stirred in the covers, battling the growing excitement of my manhood. The phone rang louder as did the voice in my head telling me no, don’t answer it. The voice knew that it was another stranger, one who I had a previous sexual encounter with but who still remained a stranger. Someone who I only knew by the twelve characters that made up their screen name. A made up pseudonym made up of a sexual act that told you what his intentions were without him saying a word. 

He wasn't real, the stories of his self wasn't real yet I wanted him to make me real, to have validation through the process they call sex. I knew with each ring my response was needed and wondering what direction was I planning on taking. Was I going to put myself in literally a position of giving away my ‘stuff’ or was I finally going to have the gumption to finally learn to say no.

Saying no had always been a problem for me starting from the days when I was taken advantage of as a child. All those many years ago when I said no it was overridden and ignored for the benefit of another. In my powerless state I felt that the word no was stripped of any rights I had and that who was I to say no, I was black and based in the definition of society I had no value. And in my older years as a gay man with HIV I had even lesser value as a person so who was I to let no fall from my lips. Even those years I stood on my own two feet I still denied myself the power of saying no. I was a people pleaser. I wanted to make everyone else happy and in their happiness I probably would find my own.

My dance was how I became HIV positive. It was a first time experience of a situation where I wanted to be liked. Where I thought I wanted to be loved even if I didn't know your last name. Just the fact you saw me was priceless enough. I put on a show for you to simple see me. My costume were tight fitted clothing that showed my definitions,  a voiceless mannequin among other mannequins all fighting to be seen and admired.  Even when I was given this lifetime gift of HIV and finally voiced ‘no’ it was too late as the deed had been done.

Learning about sex so young I thought that using your body was how you were supposed to show your value. I thought that the way you performed in bed was a validation as an individual and that by doing so you mattered. In that search for validation I kept giving my stuff away again and again not seeing how each time I was giving a piece of my soul away.  Each encounter was not always about the pleasure of sex but for you to like me enough to say one good thing about me. Something I could hold on to until my next fix of a stranger’s praise. When I finally opened my eye to my reality I told myself to stop and don’t do that again. But just like I couldn't voice my ‘no’ to strangers, sadly I couldn't voice ‘no’ to myself.

In a way I didn't want to stop my destructive behavior of random and sometimes anonymous sex. I had HIV so little else mattered and I basically didn't care. In that moment I didn't have to learn to say no as I was living for the moment. The online world was my real world as I trolled profiles looking for the next person who was going to affirm me. I lied in my descriptions and told people what they wanted to hear as I typed away with uncontrollable furor, my fingers seeming to have a power of their own.  My sex life was like Lays potato chips, I couldn't eat just one. The real world of becoming re-infected or getting another sexual transmitted disease fell on my deaf ears. 

It wasn't that I didn't care but I felt when it came to my sexual urge I no longer had control. That I knew it was wrong and I should have told myself no don’t do this to myself, but if I couldn't say ‘no’ to myself how was I going to say it to you especially when you tell me you’re not going to wear a condom because it doesn't feel real. I would have died for any feeling as I become numb to my own wants and desires. I wanted to feel real myself.  

There were many moments when I would look in the mirror and in those moments I couldn't look myself in the eye ashamed at what I was doing and letting others do to me. I would step into my living space and see the clutter, not only mentally but physical as around me everything was out of place. The dirty dishes, the unmade bed, the uneaten food left on the dining table, the days old papers strewn about all reflected my life. My home was dirty, my thinking was dirty, and I felt my soul was dirty. I had a conversation with myself asking why and trying to remind myself what kind of person I was. Telling myself to think about my dreams and is this who I want to be? Reminding myself of my talent and worth and contributions and this is not me. I would apologize to myself and tell myself that never again would I place myself in that position. Never again will I compromise my values for an instant gratification. Never again.

But then my hand would direct the mouse to the online chat room or the phone rang at the odd time of the night and my will was once again tested. The worst part was not that I did what said I wasn’t going to do, going back on my affirmation. The worst part was that I let myself down, again.  I didn’t say no.
At first I thought it was my HIV that placed me in this irrational place. That it was this disease in me that made me feel like I had nothing to give but my body. It wasn't until I let myself go back past my HIV and reexamining my child abuse that I found my reason for my self-destruction behavior. I had shut the door on that part of my life and felt it didn't have an effect on my present. In a way I even fooled myself into believing that it didn't happen at all and if it did I wanted it. I didn't know then that this was my way of not being a victim and to gain power of the situation.

But I was a victim and being a victim didn’t mean that I was a powerless but that an unfortunate situation happened to me that was not my fault. Pulling back the covers on my private shame I realized that I could still say no. Say no to being victimized again. Saying no to my past abuse continue to pull the strings of my life. Saying no to myself and that I will stop denying myself a full healthy life.  I had within me the power to say no. By taking a step back and facing my darkness I was able to finally see the light of my life. It was always there waiting for me to discover it. Waiting for me to embrace it.

And when I stripped myself of past lives I did the most wondrous thing. I learned to embrace the person that I was. I learned to accept everything there was about me, dysfunction and all. In my imperfect life I found perfection that I had the power to share on my own terms and no one else. I was no longer auditioning for the attention of others but each day made sure my own life was a showstopper for myself.  I stepped away from the lies and clenched for dear life my truths of who I was. I created my own worth.


So as the phone rang although old feelings came rising to the surface I was now in a position to say no and by doing so emerging into the person I wanted to be. Many years later the phone has stopped ringing and my self-control is now in control. I live in a relationship for the past 14 years with God and my partner on earth and my past no longer is my future. I still have HIV but it doesn't have me and I have been rewarded greatly by simply learning to say no. 

Friday, October 25, 2013

What if....

What if....

Those two words separately have little meaning but combined has a powerful way of influencing your life. To say those words makes you enter the road to doubt and hesitation. We want to use the combined words to prevent us from self-harm but sometimes don’t realize the harm it does to self. I adopted the words into my language and even today fight to keep them at bay but they were once so pronounced in my life. The words 'what if' truly came into my life at a specific moment. I would have to say the ‘what if’s’ of my life were truly born during the early days of me discovering that I had HIV.

In those early days after walking home from the doctor and trying to make sense of the news he just shared to me of my status there were two thoughts running around in my head. Am I going to die of this disease and what will people think of me? I wanted to share the devastating news right away but the ‘what if’s’ came pouring in filling my brain with uncertainties. Questions that I couldn't answer but I still produce came, questions such as what if they reject me. What if they blame me? What if they tell me this is what happens to people who are just like me, gay? Knowing that to share my news I also had to reveal my other secret, my sexuality, that was sheltered by my ‘what if’s’. I think no matter how hard I tried to find a workable solution in the end each scenario had the same outcome and not in a good way.

My life went on but I wasn't happy in the space. I was living in a house made of fear, surrounded by walls of missed opportunities and covered with a roof of depression. Although I wanted to evict myself from that space I didn't have the nerve to. You can say that the ‘what if’s’ kept me prisoner as I looked out the window envy of others who were living their happy lives. But that door before me gave me pause and remained lock despite me holding the key in my hand to release myself.

Another aspect of living a ‘what ‘life is recognizing the limits it places on you when it comes to dating or forming a relationship, sexual or non-sexual. This is when your doubts go into overdrive. Some classic thoughts I had were:
What if they find out about my secret?
What if they discover my medication in the bathroom cabinet?
What if they fall in love in love with me?

I then asked myself what if I start to live a negative life? Not negative in the state of mind way but negative as if I was never diagnosed with HIV. That all my interactions about my health were a lie despite who was asking, whether it was my doctor, my family, friends and those I was interested in romantically. That my response to them was that I am HIV negative and no way am I one of those people. Knowing that in my responses I was living a life created by my ‘what if’.

I was so scared of my ‘what if’s’ coming true and living in such a place of fear it seemed my life was on freeze frame. Yet there was a small light of hope when I decided to let my shield down and not use my status as a barrier. When I finally accepted my status and stopped denying myself the ability to love. You would think the ‘ what ifs’ were exorcised by me freeing myself but even in that space of me sharing my status with someone in my dating life I developed a different strain of ‘what ifs’.
They were now reformulated and questioned:
What if I give them HIV?
What if I re-infect them or they re-infect me?

And the one that really made me pause
What if I die on them?

My language of what ifs were truly making my life have less value and if I examined all the questions of my ‘what ifs’ I would see that it was mostly for the benefit of others and what they thought of my life. In my unselfish moment I was being selfish to myself and denying my own self a rich full life. Ironically when I questioned what if I die on them I should have looked at myself as I was already slowly dying mentally and not because of my HIV status but because of my own self-inflicted limitations. My ‘what ifs’ had dictated my movements, my non-movements, my dreams and goals and I was tired of it stealing my joy. I had heard of the benefits of jumping into the waters and learning to swim but I was so scared of drowning that I stayed on secure ground.

I can say that my life took a change for the better when I finally quieted my ‘what ifs’. It took finding who I was and recognizing I was more than HIV. I rewrote the definitions of ‘what if’ and instead of it ending with a negative conclusion, replacing it with positive outcomes. I had to let go of trying to control the endings and just let it happen and then deal with the ramifications good or bad. And in that moment recognizes it was not the word ‘what if’ that I had issues with but it was the word control. I wanted to be one who decided to reject me. I wanted to control who knew my status. I wanted to be in control because handing the keys of my control to others I felt made me weak and what if they couldn't handle the responsibility.

By removing or limiting my ‘what if’ and lessening my control I started to see the difference it made. With the shield down more people came into my life. And yes some people did leave but they only made room for others. And the greatest benefit was I started to truly live. I started to reclaim my dreams. Things I thought I could never do I accomplished:
I went back to school and got my degree.
I quit the unsatisfactory job and fell in love with one I liked
I learned to swim literally as I always wanted to but had a fear
I started a blog just for me and a few friends and now helping strangers navigate the world of HIV


I would never had accomplish any of these things if I had never stop trying to be always in control and having the ‘what if’s’ run loose in my thinking.
I finally used my key and left that house of fear.

Friday, October 11, 2013

Remembering Aaron

Aaron Burks represented many things to different people. For some he was that soulful voice that he shared with others as he sang in choirs sharing God’s words in song. For some he was that HIV specialist who let those affected and infected by the virus know that there are many more tomorrows and that they are not alone. For some he was the father who raised beautiful children and gave them lessons that said you can do anything and everything you want to in this world. For me he was a dear friend who showed me that no barrier was too high to climb or overcome and any obstacle can be moved out of your way.

Aaron Burks left us this past August from a rare blood disorder and a huge hole has been left in his absence. I had met Aaron so many long years ago. When you met Aaron the first thing you saw was his smile and his Hollywood dimples. You couldn't help but smile yourself as he radiated warmth of friendliness and confidence. You couldn't help not to be drawn in by the friendly spirit he exuded. It was a genuine love that radiated from him.

My admiration of Aaron of course goes beyond his physical aspects. Looking back over his life he silenced those who said ‘you’ll never be able to do that’ as he did it. Aaron like me was HIV positive. So he was familiar with the stigma and the shame of having this disease. He knew about compromised immune systems as he sometimes fell in the danger zone with his health numbers simply because that was the hand he was dealt. But still that didn't stop him.

He also faced another demon as he had an addiction to drugs. This was a hard battle especially having HIV and one not often discussed when we’re talking about the virus. As I had to learn his addiction was not one of choice but a circumstance that was in his life that wasn’t in the norm. Even as a friend I sometimes felt helpless not feeling I could help with this battle. Mostly because I didn’t understand his battle or the shoes he walked in. Most people would sit back and judge Aaron’s life but not understand completely the process of addiction. I thankfully never judged but took my turn along with others to let him know that when he was through the storm we were going to be there waiting for him. But even having the addiction didn’t stop him.

You would think Aaron had enough to go through but he faced another wall when he was incarcerated. He again represented untold stories of those having HIV and living a life behind bars. I was very worried at this time as it was hard enough to live with HIV in open society and now to be in a place where you’re locked away from valuable supportive resources and limited access to exceptional health care. Not to mention contained homophobia and stigma that had the ingredients to lead to physical harm. Those moments my prayers went to Aaron and thankful God gathered the many prayers for Aaron that his loved ones sent and shielded him until he was with us again. You would think that facing so many tests Aaron would fold and crawl in the darkness. You would think wrong as even that didn’t stop him.

To have his life of imperfections Aaron was not stopped by it as he took all the misfortunes that were handed to him and flipped the script on it. He fought back the forces that lead him to addiction and walked a different path. He looked in the mirror and didn’t say, “because of my former jailed life I will have limited opportunities”.  Instead he made his opportunities and removed any fear and established a new career with a great nonprofit in Minneapolis called the African American AIDS Task Force, where he shared his life and experience of living with HIV and helped others, eventually working for the State of Minnesota helping even more.  He did this not to settle but he knew it was his calling and he answered it. With the love of God he accepted his life and mission and gave examples that despite what circumstances one has endured, it is for a reason. A reason we may not understand or see at that moment but God does have a plan. Don’t give up and don’t give in. Aaron did neither. He refused to let HIV and other factors excuse him from having a blessed life.

Aaron found true love with another great soul as they found each other in this crazy thing we call life. His name was Michael and you can say Michael was an angel in disguise because he promoted the love they had for each other and made it into a new life for them both, eventually sharing a new life together where Aaron moved thousand miles away to New York City to begin another chapter. Let me just say most people I know are scared to move to the next block and some are scared to move from that mental space but Aaron showed no fear. Even that didn’t stop him.

In his recent passing it has made me look at my own life and what excuses have I made for myself for not living my full potential. Living with HIV have I told myself I can’t do this or that because of my state of mind? Yes Aaron was in prison but he was still free. Some of us are free but still are in prison. Looking at our life beyond the bars of which we hold the key. Aaron has shown how easy it is to unlock your true potential and yes brother even in your passing I have to say that you will continue to be that motivator for life and your song and beautiful voice will continue to guide many, including me. And despite your death I can say you are the impossible as even that won’t stop you.

Love you dearly 

Tuesday, September 24, 2013

The Benefits of Having HIV

Recently an article was published on men who were not trying to prevent getting HIV but rather actually wanting a diagnosis of HIV/AIDS.  The article referenced gay men living in NYC, primarily African-American, as they provided their reason for wanting the disease. The basic premise of the article was that certain men saw a financial benefit from having a HIV diagnoses and could benefit by receiving services from the state such as free medical care, housing and a monthly stipend. This story, horrific as it sounded was not a surprise to those who work in the HIV field in NYC. I myself was not shocked to hear this as I had heard that it was a benefit to get HIV to better people’s living especially in the expensive city of New York City. Reading the story made me look at it in a different perspective which wasn't to question the motives of HIV positive men but to look at the systems here in NYC that creates an environment where having HIV is a benefit.

To be clear gay men don’t want HIV/AIDS but as described in the story and within the community they want the financial benefits that having HIV/AIDS offer them. The incentive of HIV/AIDS has in a way made it into a pension plan where there are many elements of long term care. What does it say about a system where it creates a unfavorable situation into a favorable and how can it be changed without punishing those who truly rely on it?

Mind you if we were to look at someone to blame we would have to look at several different factors that creates a system to be abused. The most obvious one is the societal level of the city itself as it’s recognized that many unbalanced equalities exist in New York City especially for gay men of color. Lack of employment, being uninsured and housing is a huge and growing problem for many but these issues affects gay youth in enormous numbers. Most people I worked with as clients faced homelessness or were in a situation where their living situation was temporary. 

Simply looking at the issue among the homelessness problem of LGBT youth in NYC it’s clear that the need outweigh the ability to offer youth a place to call home.   As Carl Sicilano of Ali Forney Center has pointed out, “LGBT youth make up 40 percent of the homeless youth population, accounting for 1,600 of NYC's 3,800 homeless youth. And NYC's response is even more horrifying: Only 250 youth shelter beds are provided by the city, forcing many youths to sleep in subways, on park benches, in abandoned buildings and on rooftops.”

For these individuals the price of having a disease prevails over their ability to receive housing and other services offered by the city. Individuals are in a situation where they weigh what is the most immediate harm. I use the word immediate as when you’re in a bleak situation, long term is not an option or a concern at the moment. So faced with the immediate dangers of being homeless brings versus a disease that is now perceived as manageable and doesn’t put one in immediate threat, in a way the issue of homelessness cancels out having the disease.

The second factor that should be looked at is the way social service agencies that support those with HIV assist with creating this entitlement of cash incentives.  In NYC HIV focused agencies will often give various ‘incentives’ to get clients in their doors. The process of offering incentives may have initially been seen as a way to encourage those who were hesitant to seek HIV services because of factors such as stigma and homophobia has now morphed into an attitude that one should receive an incentive to manage their care. 
This incentive approach to modify behavior is not new as it has been utilized by schools to help students improve their attendance or grades and even to donate blood but not everyone thinks it’s an effective tool of change. 

A recent study by economic professor Uri Gneezy found that proponents of using monetary incentives in behavioral interventions can be helpful in getting people to study or exercise more. But opponents believe that using incentives in those areas could backfire because extrinsic incentives may in some way crowd out intrinsic motivations that are important to producing the desired behavior
In New York City incentives to manage one’s HIV health may include a Metrocard, a free movie pass or a gift card depending where one goes.  The value of these can range from 5 to 25 dollars. Even the very act of going to receive a HIV test will usually net a person a monetary incentive. These can be considered on a small scale, a contributor to the thought that HIV has some type of financial rewards and could explain why the men who saw having AIDS as being favorable based on the rewards. 

For those aware of the incentives offered by social service agencies, they have learned to abuse this system as there is no unified way to track a person receiving an incentive from center to center. A knowledgeable person in one day can travel around the city and visit as many agencies as they can to get tested and receive incentives at each place. In some cases the person is already aware of their HIV status but proceeds to get tested based on the incentive they will receive. It’s similar to a child on Halloween going house to house collecting candy only in this case an individual doesn't have to wait a year to do the same routine.

Also HIV agencies don’t want to turn anyone away as providing services for their clients is sometimes more about quantity than quality as HIV initiatives becomes more a number game set by funders. This quota set by a city; state or federal grant is basic in all grants and is expected to be met for future funding. This has a relationship with incentives offered as incentives among agencies are not uniformed but rather the idea is to get the best incentive that will bring people in and keep them coming. From HIV support groups to HIV events and even mental health care, all offer some type of incentive to get consumers to walk through the doors.

To be fair many clients need the incentives especially those needing transportation. The problem is that it goes beyond the basic need and modifies a person approach to their health. No longer is one wanting to maintain their health because after all it is their health, but they have now been indoctrinate into a system that communicates that maintaining one’s health should be rewarded. Looking at offering incentives many studies have shown when trying to change behavior incentives don’t work as when the incentives are removed the motivation to change also disappears. So as this disease changes the way to get people into care and staying into care has to change and that includes offering incentives to manage one’s health.

There’s no need to throwing out the baby with the bath water as incentives in a short term way has some value but in a long term way especially in New York City a model has to be created that doesn't create a culture where having HIV/AIDS has a benefit.



Thursday, August 29, 2013

Loving Self

In a previous blog I touched on the subject of self-hate that many gays show to each other and how that is reflected in the way we interact.  I want to continue this discussion as it’s an important topic that needs to be talked about. What I presented in the previous blog was more of awareness and this time I would like to try to answer the question I posed in how we love ourselves as same gender loving men living with HIV.
Self-hate is one of the most destructive traits to have as it hinders your ability to form and even maintain relationships with others. For some it may manifest itself as displaying the way you feel about yourself externally to strangers and people you know. It’s a sad matter when another gay person I  encounter within the first few seconds of coming into view of me, greets me with a look of disdain or scorn when they don’t even know my person. Some call it giving ‘shade’ but remove the fancy naming of it and the reality is that it’s a showing of how that person feels about themselves.

Most self-hating behaviors come from encountering opposing views of our sexuality. The process of not having the ability to simply’ be’ based on homophobia leaves many in a repressed state where they have to contain their true selves. Adding HIV to the mix, you know feel further distanced from your own gay community as it’s recognized that within that community lies stigma and rejection based on your status. Living in an environment where it feels no one accepts you, we sometimes place the blame on ourselves and wish things and ourselves were different. 

Self-hating behaviors also can lead to risky behaviors such as unsafe sex and heavy usage of drugs and alcohol and is one off the contributors to depression. You reach that place of not caring and embrace negative traits as a way to simply forget or not deal with the situation that you’re in.
So how do you navigate around this hostility and looking at ourselves how do we fix a part of us that we don’t particularly like? In addition as gay individuals living with HIV, how do we remove that negativity out of our lives and find the way to love ourselves even when we don’t feel others do.  Answering the question I looked at five ways to move to a place of self-love.
1.      
      Stop Auditioning
      We all have something to contribute and give to the world. But living in the judgment of others we stop finding out who we are and what we like. We become passive in our interactions and our wants and desires are not acknowledged. I know this personally as I once lived a life feeling I had to please others to like me and accept me.  Based on a previous history of child abuse and now having HIV I was looking for the love of others and didn’t realize I wasn’t giving it to myself. It felt as when I met someone I was doing a tap dance, putting on a show for that person to like me. I was auditioning for their attention and affection. Stop auditioning and seeking the approval of others. Recognize that true love is someone who accepts you fully for who you are and don’t require you to audition for their love. A person who truly cares for you will not only look out for their wants but will also make sure yours are being met. Acceptance is a two way street and should never be one way. If it is step off the stage and give your own self a bow for knowing you don’t have to seek the approval of others, whether it’s  someone you know or strangers.

2.       Start Seeing the Love Around You
Often I hear people state that there are no good men or women and how one is overlooked while others get attention. In their quest for love or building friendships the search becomes frustrating and the behavior of one is now used to judge others. So instead of one person being shallow you start to see everyone as shallow. Unfortunately by using such a broad brush we miss out on good people who are giving you attention. We have focused so much on those who won’t give us the time of the day and have developed blinders to those who are trying to garner our attention.  We focus on those who won’t love us because of one’s HIV status and don’t recognize that for that one who rejects you, they are simply making room for those who will accept you. We can push away good people by not seeing the love that is around us. That person may not have all the physical attributes we like or may not fit that perfect mold, but unless you’re giving perfection you can’t expect it. We all have flaws and recognizing that we start giving more attention to those who truly want to get to know us as opposed to those who won’t give you the time of the day

3.       Stop the Negative Talk
Ask yourself would people want to be around you if they were able to hear the dialogue that happens in your conscious. Better yet would you want to be around yourself if you heard so much negativity on a daily basis? We can be our own worst enemy when it comes to negative thinking. We beat ourselves with so much negative talk that we start to believe it. Then we wonder why people don’t want to be around you. Negativity thoughts block you from reaching your full potential and are a classic example of self-hating behavior. Having HIV doesn’t make you ugly; our negative thinking makes us ugly. HIV is what you have it’s not who you are. In a nut shell if you don’t think highly of yourself why would anyone else. The loving process begins with you and you’d be surprised how people will flock toward you based on sensing the love you’re showing yourself. It’s also a good way to prevent engagement in negative behaviors as you’ve switched your internal dialogue from ‘no one loves me’ to ‘I love myself”

4.       It’s Not About You
Sometimes we want to personalize our interactions and become bitter when someone doesn’t seem interested in us. Sometimes we think it’s something we did, the way we look or our HIV status. We even sometimes g o into a long elaborate story of the person’s motive for non-engagement. When you think about it that’s a lot of energy. And you’ll realize its misplaced energy when you accept that it’s not about you. It sounds so simple because it is. Sometimes a person may not accept your attention or advancement because they may not be in a place to. One has no idea what stressors that person is going through let alone their history.  We want to take their lack of response as a negative and turn it back on ourselves where now we have anger for not only that person but the whole gender. It’s unfair to them and it’s unfair to you. Recognizing it’s not about you will lessen the edge and you’ll learn how to have empathy. In the same breath it’s not an invite to try to fix that person. It’s only not your job but you’re simply setting yourself up for failure and more bitterness. Just move on to someone who’s ready to have that engagement.    

5.       Practice Saying I Love Me
This last practice of removing self-hate will sound revolutionary when I present it. A best practice of confronting self-hating aspects of you is to look in the mirror each morning and to tell yourself that you love you. It may sound vain but why is loving yourself such a bad thing? It can be a daily practice to look in the mirror and not look for the negative or what’s out of place, but to look for all the positive things about you.  Look and embrace you no matter what part of your body you’re looking at. It can be out of shape or the wrong color no matter it’s a part of you and that makes it and you unique. Focus on all the great characteristics that makes you and embrace it.  Most importantly when you tell yourself how much you love what you’re seeing also go beyond the external and give yourself acknowledgement for enduring the hardships in your life and still rising to meet other challenges. Take credit for the fact that despite your circumstances you have still rise and our beauty is more than your reflection.

 But most importantly love you and if no one in the world loves you (which I doubt) you can take comfort in the fact there’s one person that loves you unconditionally; and that’s you.


Tuesday, August 6, 2013

The Online Race

There has been plenty of discussion about race and race relations in this country. Expressed feelings are still being stated from the not guilty verdict of George Zimmerman and most recently we heard the opinion of CNN newscaster Don Lemon who echoed a known conservative as they gave voice to black responsibility or rather lack of it.. For some reason Don Lemon’s comment, an African American and recently out gay man, seemed to have provided the biggest sting. Timelines of social media from Facebook to Twitter have had many either agreeing or disagreeing with his statement and countering it with their own. For myself I could barely keep up with the attached links of articles discussing Mr. Lemon’s statement and the numerous sharing and ‘liking ‘of the information. As the news feed of my Facebook page refreshed, what hit me as I watched the collective voices was, when do we, the people who care about race and race relations move our actions and reactions from the online world and bring it to the real world?

Facebook and other social media are good in that they keep one instantly inform about issues. Whether it’s a news bite, breaking news or an article of interest, in a minute we can share that information and comment on how we feel. When it comes to matters of race we can sit on our couches, our desktop at work and even relax in the local coffee shop sipping on our latte and talk about how upset we are with a recent story or statement connected to race. Yet that’s where it ends. Our outrage is contained to the space we’re in and not making its way to the battlefields. There’s public venting but no public action.

Instead what happens is that we regurgitate this hate and make sure our friends and those on our friends list can see it but we don’t sign off social media to insert ourselves in this current race war. I wonder what the civil rights movement would have looked like if they had social media back then. Would there have been marches and people placing themselves on the frontlines sacrificing their freedoms and their lives. Would we all have gathered ourselves and with what few dollars we had in our pockets and made our way to the March on Washington to hear Dr. Martin Luther King or would we have sat in the comfort of our homes and streamed it while making dinner. Even during the early 70’s when justice was still hard to come by and afros were as big as the back pride people carried, would we have pushed ourselves away from our Macs to say out loud, “I’m black and I’m proud” or would it have been a Facebook daily status when it asks how are we today?

After the Supreme Court dismantling of voting rights I’m still looking for the daily marches of people who are affected but instead greeted by people who walk around the city not with their ‘eyes on the prize’ but their eyes attached to their smart phone as race relations become unchecked and the blood of our ancestors who fought for this right is spilled in vain.

When do we become involved in the real world and push ourselves from the online aspect of it? I ask this question of myself as well as I don’t want to fall into the shoes of Don Lemon who sticks his head out and states what is wrong with black folks yet doesn't lift a finger to solve the problem when he has the means and the capital to do so. At least when Bill Cosby pretty much made the same statements years ago he showed his commitment with his foundation which address literacy among youth. What Mr. Lemon fails to do is show any action for his concern. Instead using media to put out his opinion and join the circus of everyone else that does the same when it comes to race.

So when do we walk the walk instead of talk the talk? How many more times are we going to be outraged online over a race incident that we shouldn’t be surprised happened because of the atmosphere or the person and the history of how racism has shown itself? When are we going to power down the computer and power up our fight in the streets of low income areas, in under funded schools and even broken homes that we judge from afar? Black men, why aren’t we all big brothers or mentors to at least one youth in the neighborhood or in our families? Black sisters why aren’t every one showing our black youth, the ones who are getting an inadequate education or just lost faith in it, how to use education to their benefit? How many black intellects and theorist do we need huddled together patting each other on the back using ten letter words as a system which was not designed for blacks continue to go unchallenged in the real world?


 I go back to an old saying, “If you’re not part of the solution, you’re part of the problem”. Changes in race won’t be made online but as our elders before us, we have to hit the streets and become connected to what’s going on and disconnect ourselves from the social media that has stalled the progress of race relations. This call even goes out to me who sometimes get caught up in the frenzy especially with Mr. Lemon’s comment. Whether he’s right or wrong doesn’t make a difference. It’s the action of those who care about race relations and those ready to jump out of the cyber world to roll up their sleeves and start a movement, that’s the difference we need!

Tuesday, July 30, 2013

Deconstructing My HIV

I know early on when I found out about my HV diagnoses I had the question most may ask. Why me? Why did I have to get this disease and have it impact my life? What did I do wrong? Was God mad at me or was he trying to teach me a lesson? My life was supposed to have been different and this was not the way I had planned. They say everything happens for a reason but why was this my example and what was the reason? Wasn’t there another way I could make an impact? In looking at these questions and trying to find the answer I had to deconstruct my HIV and reconstruct it in so that I could find the meaning. I had to do this and after all these years go back and find the meaning of my HIV status.
I remember the years when I was told my status. I was in a literal free-fall. I simply felt I no longer had a purpose. I had stepped into the unknown and with little answers I felt I was on my own. I was a quiet child and kept to myself. I had yet to find my voice. My experience like almost everything at that age was still new as I had yet made it out my teen years. I think along with the question of who was going to love me I also asked myself how I was going to love myself.
The one thing I didn't like about my status is that it made me passive. I was not in a place where I was looking out for my interest but I was more concerned how others would react or feel about me being positive. That was one of the reasons I had a hard time with disclosure as telling someone your HIV status placed me in a passive position in waiting to see how they would respond. Holding my breath preparing for their reaction, leaving my fate in their hands. Like an innocent puppy I accepted this role and when I told my truth and was rejected for it I was more angry at myself for placing myself in a position to be rejected. I learned the word humble very early. I learned not to disclose.
I walked with anger or rather I let the anger of my situation control me. Many people see me as this respectable and educated person now but they didn’t witness my dark period. It was a time when I woke up angry for no reason. It worked for me or at least I though as it helped push people away. That’s what I wanted. I didn’t want anyone to understand me or join me on my journey. I didn’t want my guard down to once again place myself in a position to be rejected. I was unaware that I was also setting myself up for isolation and the depression that usually accompany it.
Finally finding someone I could tell my secret to they still had no idea what I was experiencing. Many people who don’t have HIV believe that they can read stories or articles and have a sense of how it is to live with HIV. Honestly there’s simply no way to communicate all the nuances of living as a positive person. It’s not just about taking a pill or making sure to see your doctor regularly. It’s now a part of your character and an aspect that stays tucked in the back of your mind finding little moments to remind you it’s still with you. There are aspects of it one will never grasp as the stories vary from person to person and there are differences in how it’s viewed by others based on gender, race and sexuality. 
There’s a saying that I can relate to. It says how one was so down that they had to reach up to touch the bottom. I think for me I was at a point when I was tired of touching the bottom of my life and wanted to reclaim my full potential. The way to do that was to first get out of the passive role and get assertive with my dealings in life. I had to stop looking at myself as a victim and get back behind the wheels of my destiny. I had to do something revolutionary. I had to learn how to love myself despite my health situation.
In this place of reconstruction I had to tear away from the people who didn’t have my best interest in mind. I had to stop focusing on who didn’t love me and bring forward in my life those who did love me. My construction of self-meant tearing down the wall I had placed around my heart. I also had to destroy bridges that led me to negative behaviors and make new bridges that placed me on a road to my purpose.

I learned to say the word no. I repeat I learned to say the word ‘no’ especially if I found no benefit in my life and teaching myself to say yes to opportunities that I may have thought I wasn’t ready for. I stopped feeling guilty about placing myself first and although there is no cure, staying healthy not for any other but my own benefit.

Friday, July 12, 2013

Basement/Penthouse

If you were looking at your self image in a mirror and the way you saw yourself where would you reside?
Are you in the basement or in the penthouse of your life?
The basement is a cold dark place that allows little light to shines through. It's not welcoming and has dirty corners in which small critters find comfort. It’s true you can renovate it and fix it up to look comfortable but it'll remain the basement no matter what you do. A penthouse on the other hand is the opposite. It's filled with light; usually well maintained and stands above everything else. It has a shine on it and it's lifted. It most often represents attainment.

So I ask the question again, where do you live?

If I asked myself that question in my twenties I would have told you the basement. Back then living with this virus I felt dirty. I had no light in my life as I was trying to keep my head up from swimming in a pool of misplaced values and a sense of belonging nowhere.

I didn't give myself the gift of nurturing. My basement was filled with clutter of boxes stored with past pain of child abuse and low identity of self. I had picture frames of a smiling child that masked confusion on what lied inside of me and why did they call it gay. My older photographs were similar in pose only now the confusion was unable to comprehend this thing they called HIV.

It was a basement that I first received my gift. A questioning boy walking into the adult arms of a person who showered me with words I only heard said out loud to puppies. Words like 'cute', 'adorable', 'precious' and 'love'. It was in the dark of the basement light these words were whispered to me; even the red light bulb hanging from the wall knew it was a lie. But when you grow up not being affirmed or having value placed on you, you take whatever water that will help you bloom even if it's the leftover sludge from the bottom of the bucket.

I believe we were all born with wings to fly us up to higher lofts, but in my circumstance I was a child with clipped wings. Wings that were once full bloom now tarred with insecurities, self doubt and shame. "if you ever grow up to be a faggot I'll kill you" were the lessons I learned, lessons from home, from peers and deeply rooted in my community.

My true self was hidden in mason jars sealed with duct tape, hidden among the spiders on dusty shelves in the basement.

My saving grace was the cracked mirror where I came face to face with my reality. It was hard to see my reflection especially with my eyes closed. But I found the strength to clear the dust of doubt and reveal in my true persona. In the musty air I whispered to my reflection.

I am beautiful

In those words I saw a stripping

The physical action of saying it lifted my eyes to the possibilities of the words that have escaped my lips. Saying I was beautiful gave me a key to unlock my own potential instead of waiting for someone else to open the door to affirmation. I was refreshed in new waters yet to be tainted as I repeated this mantra of beauty to myself. I initially half heartily bought into the fantasy of the word beauty and my self mentioned in the same breath, yet I knew to find the way up out of my misery I had to believe, simply believe that despite my circumstances and disadvantages that I truly was
Beautiful
My reflection of self embraces it as I see the person I want to be.
Happy.

I start to see steps. Steps leading up. Ones I need to take to see the true light of my possibilities. They look daunting to climb but my will was stronger. Each step is victory as my bare feet moves forward, no longer dwelling in past mistakes.

I step forward out of low sense of self

I step forward out of stigma relating to my HIV status

I step forward out of harmful behaviors that uproot me from my growth

I rediscover me even in those moments of missteps that take me down a step and with the strong will of God finding direction to not have any set-back be a step back

But a step forward only wiser of past mistakes

My beauty takes me from my basement moments and moves me to an upgrade in my dwelling

To my true home, the penthouse

From here I can see all my possibilities

I can bear witness to my dreams looking out unlimited windows

And my true light shines, a gift from God.

Here I spread my wings
Regrown from my investment in self

This is where my life is supposed to be.
This is where I call home.
How about you?
Where do you live?
In the basement or the penthouse?


Friday, July 5, 2013

Condom Conversation

When it comes to HIV many should be aware that an effective tool to prevent exposure is using a condom.  In fact there are those who feel that there’s no excuse for someone to get HIV today especially with all the information out there and the vast availability of condoms whether free or by purchase. Yet what if a condom isn't simply a condom? What if the condom has more of a symbolic meaning, a subtext to one’s relationship that doesn't make it so easy as to strap one on before sex? What if it represents an unspoken communication in your rapport with someone else that raises other issues besides HIV? How do you have a conversation about introducing a condom when you’re having the discussion with someone mid-stream that you've been in a long-term relationship with and not a one night stand?
When looking at HIV prevention posters there seems to have one thing in common. The message seems to be directed to those who are not in a serious relationship and may have multiple partners. One message that is not effectively communicated are HIV campaigns that address those who are in a committed relationship. The feeling may be if one is in a relationship then there has to be an expectation that both couples are monogamous yet there are many statistics that shows that infidelity remains one of the big problems in any relationship, whether t’s same sex or opposite sex couples. Focusing on LGBT couples statistics on infidelity among same sex couples show an unusually high rate of infidelity among lesbians and gays. One study of male homosexuality found that few homosexual relationships last longer than two years. Data from the Gay/Lesbian Consumer Online Census shows that only 29% of gay/lesbian relationships last more than 7 years. In forming this relationship one may feel that since being in a committed relationship there is no need for a condom.
I personally knew of such a couple. They had been together for eight years. One had started to communicate that they had suspicions that the other person was cheating but didn't know how to approach it. There was even a case where they had an STD scare but later found out it was a simple cold sore. Yet that fear alone didn't give my friend the strength to not only talk about his suspicions but to also talk about start using a condom. So it became a waiting game until finally the partner was caught cheating and during that time my friend didn't know if his ex was using protection with the other person and if not was possibly exposing my friend to any STD. My friend also didn't bring up the condom conversation as he fell into an old belief that acknowledge their partner may be having sex with someone else, which was only sex , but they are the one they love.  
To introduce a condom in an established relationship is difficult. One partner in a relationship may feel different and may want to start using a condom for many reasons, yet by doing so the condom takes on a new meaning. It’s no longer simply about prevention, but the introduction by the other half of the partnership may view the condom as a lack of trust.  Perhaps the other person may feel their partner is not being monogamous and want to protect themselves against other HIV/STD. In the book Sex in America: A Definitive Survey, by authors Michael, Gagnon, Laumann, and Kolata they found that they may also fall into another statistical fact that gay couples who remained together past the 10 year mark were able to do so only by accepting the painful reality of infidelity in their relationship. In this unspoken knowledge a partner through the acceptance of the fact my still not bring up the issue of using a condom and may feel that whether their partner cheats that they trust their partner enough to not be exposed to HIV or any other STD.
There may also be an acceptance based on another aspect of the relationship that makes discussing condom usage difficult. That is one of power dynamics within the relationship itself.  One power can be focused on the one who is considered the major bread winner or supporter of the household. In some unions it’s equal/equal but in some relationships one person may have an advantage over the other as they may take care of most of the major expense which can include housing, bills and living expenses. This unequal equity balance may make feel they have little leverage to introduce a condom into their relationship.  And that by doing so will create a possible situation where by doing so will create an environment where the financial aspect is restricted or removed all together.
Another power dynamic can be an inter-generation one where one person is many years older than someone they are in a relationship with. The younger may not discuss it as they feel that the older person, in their maturity, will protect them from harm and may see the older as having most of the power in the relationship. The issue of trust also replays itself and the younger may feel that they are no longer desired and to raise such an issue shows their immaturity.  Especially for those who are new to their sexual knowledge and experience they may leave the decision of whether to use a condom to the older partner who they feel have more experience.  
As HIV changes the approach to it also has to change.  A more recent study on the rate of infidelity among lesbians and gays done by Alliant International University in San Francisco found that the number of gay men in committed relationships who engaged in infidelity has dropped in recent years. This is a chance for prevention methods to start including couples, especially long term couplings, in the discussion of HIV.
Introducing a condom in a relationship can be difficult to approach but the conversation has to start from someone especially if you’re the one in the position with doubts of fidelity. In those cases it’s not simply about HIV or other STD’s but one about the state of your relationship in general. Empowerment is the key and in that power recognizing that even in a coupled situation you still have to make decision as an individual especially when it affects your health. Not having that talk is a realization that by placing your head in the sand you may place yourself in a position where the relationship may be over but your life with an STD especially HIV is just beginning.

Thursday, June 27, 2013

Harlem Pride

Harlem Pride
With the recent overturn of DOMA and Proposition 8 Americans especially the LGBT community has a lot to celebrate. The extra bonus is that this is Pride weekend and for those in Harlem they don’t have to go far to celebrate as Harlem Pride is this weekend, June 28th-30th at venues around the city and Harlem. From a launch party to a festive gathering there are many choices to choose from and it’s in many backyards.
Being a Harlemite I can say there used to be a time when you wanted to show your gay pride you had to travel to other boroughs or make a trip downtown. Started in 2010 Harlem Pride has filled a need that was sorely lacking uptown.  The fact that over 3,000 people attended events thrown by the group shows the need and the achievement of the group as well as showing the growing community of the LGBT community in Harlem. I know for myself I have seen the changes in the last few years. It used to be that Harlem was never like Chelsea where you saw openly LGBT express themselves. In Harlem at the time it was a silent code where your Gaydar worked overtime for find others like you. Honestly for me I felt that it was still a stigma to be gay and not full accepted in the community I called home.

Now there has been a shift and a wave of acceptance has followed and Harlem Pride continues to be a reflection of that change. The great thing about Harlem Pride is that it’s not for just one community. In other words it’s not just for blacks, Latinos, gay or those who reside in the Harlem zip codes, it’s for everyone. This is seen by the crowds who have attended, and like the diverse place of Harlem you also witness it at their big gathering. And no knock to the huge Pride that happens downtown but Harlem Pride is ideal for families as it’s held in a spacious park, Jackie Robinson Park, which has additional facilities for families to enjoy.

I went last year and loved seeing the reflection of the colorful rainbow. Like other Prides there’s health booths and agency/business information but what’s different is the energy. Okay I’ll say it, it has flayva! As I walked around last year you couldn’t help to be drawn in by the music and the rhythm of the day.  But Harlem Pride is not just for one day as according to their 2013 schedule they kick off events at the Aloft Harlem, the newest hotel to land in Harlem. This is a VIP Launch Party with special guest performers and local celebrities in attendance.  For those who may have plans for the weekend and unable to attend the Saturday event in the park this can be a great alternative.  Tickets for the VIP launch party are $50 dollars and include food and drinks plus you can’t beat the fact they will have an auction, free give ways and a raffle!  The Pride celebration in the park is free for all to attend.

But I know I’m sounding like a walking billboard and need to explain the reason for my excitement. In past Pride celebrations, people of color have sometimes been an afterthought and often not fully included in the planning process or the day itself. It was like we were welcomed to hang out on the fringe but not welcomed to eat at the big table. This was the reason many Black prides were created to bring about that visibility. Yet one can look at those organizations and although understand the need for a separate entity, it still creates segregation in the community.  So knowing that, Harlem Pride takes into account the histories of Pride and creates a unified event for all which is a great thing.

My second reason for wishing them success is that I once was on the organizing committee for a black pride event in Minnesota called Soul Essence. I can tell you that it’s hard work that people don’t fully recognize. It was great as we were successful in having events that were well attended and with no or low entry fee. We created a weekend of events with no funding and the only monies came from donations and our own pockets. The people in attendance had no idea what we had to endure to make the events happen. Behind the scenes we ran all over the city to get supplies, rushed to make press deadlines, scurried to collect funds to pay for permits all while trying to manage our full time job and our home lives.

 It’s this hard work that I’m sure the members of Harlem Pride can relate to. I’ll even go as far as to speak for them when I say that for us it was the passion of creating something for the community by the community, reflecting the community that drove us. We were lucky in that we didn’t have people to sit on our board simply to sit on our board and make decisions. Everyone involved from the board members to the volunteers rolled up their sleeve, reached in their pockets and did whatever they needed to do to make the Pride a success.  This energy is reflected as they hold events all through the year and not just in the month of June.


It takes community to make Pride happen and the celebrations this weekend are reflective of that. So please show your support and your Pride especially if you live in Harlem. For more information go to https://harlempride.org/.  Let’s come together and make music with our spirit as we celebrate recent victories in our ‘hood. So taking a new phrase, It’s not WeHa, it’s not SoHa, it’s Harlem Pride. See ya there!

Thursday, June 20, 2013

Prescription Against Stigma

“When are you going to write about us”, a comment that was made to me recently and repeatedly from the pharmacy where I obtain my HIV medication. It was a good question as I’ve been receiving my prescriptions from them for a while and looking back over those years I realize the people at Sugerhill Pharmacy in Harlem has been more than pill dispensers but have been great allies to not only helping me with my health but also much needed assistance.  When thinking of who’s in you corner when it comes to your health, the top answer is often your doctor and the nurses that provide care. Your pharmacist may not rank as high but for others like me its right up there as being an invaluable part of my support system in my life living with HIV.

Initially when I needed a place to go for my medication I was reluctant to go to my current pharmacy. I felt there were two good reasons for me not to get my HIV prescription filled there. One was the fact that it was in my neighborhood. I was once in the mindset that all my service for my status would be done out of my neighborhood for fear someone I know would ask questions. The sad part about receiving services for your HIV is that because of the stigma associated with it, others like me at the time follow this practice. A great care center may be only blocks away but individuals may choose to travel miles away because of the stigma. The second reason for my hesitancy was that because the pharmacy was small and not part of a large chain, it would have more of a family feel and I believed that my health status wouldn't be welcomed in that particular family. In a way I preferred the cold dispensing of my medication from a huge chain that didn't care that there was a person behind that pill.

Looking back I remember the fear I had about handing over my prescription that had my doctor’s scribble for HIV medication. I think the feeling came from previous pharmacies I've been to where the pharmacist looks at the paper and then looks at you over his reading glasses. A look that says, “You’re one of them”. Even at that moment the person at the register has power as sometimes they’re not skilled in their tact as they state out loud how you’re supposed to take you medication or store it. So starting my new relationship with Sugerhill made me hope it wasn't going to be a bad experience.

I have to say Dave Khantses and his crew eased all my fears by informing me he knew my doctor and he has a great relationship with him based on others who medications he filled. It was a relief as you knew right away this was going to be a ‘safe’ place and one of understanding. You can say I was fortunate as since then he has help schooled me on options that were available to me as someone living with HIV. Dave was the one who informed me about ADAP (AIDS Drug Assistance Program). This came after having a casual discussion with him of how expensive it was, even with my co-pay, to purchase my prescriptions. Despite having health insurance, because of my regimen the co-pays of my medications were easily close to a hundred dollars a month. That’s excluding any other ailments that would require me to get a prescription such as antibiotics. I’m not alone is this aspect as I know of a friend who simply didn't get a prescription filled as he couldn’t afford all the co-pays. Luckily Dave helped me through the process as I never had a case manager and in the end it made it easier on my wallet.

I even thank the pharmacy for helping me find my current doctor. My regular doctor had decided to leave his position leaving me to find another care provider. Starting any relationship is difficult including finding a new doctor. It was a relief when Dave, again knowing many HIV doctors based on conversations with his customer, directed me to the one I’m currently with. This type of assistance is a long way from some of the previous bad experiences I have received from larger pharmacies, especially chains. Of course not all chain pharmacies are bad but in my experience I often felt like a number instead of the ‘family’.

I think the value of a good pharmacy can be underestimated.  I say this especially for those who are just starting a HIV regimen. The one thing a person doesn't want to do is not get their scripts filled based on perceived or real stigma. I think even for us long-termers it’s a good reminder that a great pharmacy can be a place for resources and referrals. And if you’re a person like me who doesn't need a case manager it helps. Pharmacists speak every day to doctors throughout the city and can get a good sense on the good ones versus those who don’t have the best follow through. Like the folks at Sugerhill they can also provide information on programs or assistance that your doctor may not even be aware. Of course I say this to not have your pharmacist replace your doctor but together they make a great team. Yet ironically it was the pharmacy that informed me I could switch to a single pill for one of my medication instead of taking two a day. For me it’s an understanding that doctors can be overwhelmed and those little pieces of information can slip by but it’s nice to have someone else informing me.


So thank you Dave, Helselenne and Jung for welcoming me into the family and helping me with my care. On many occasions you've went the extra mile and always did it with a smile. My two dogs even feel welcomed when I bring them in! It’s the simple things that make a positive impact and I just know for the newly diagnosed walking into your store for the first time with a prescription in their hand, they’re going to be well taken care of. But of course if they had asked me I would have told them they were in good hands. See you guys next month!