Wednesday, December 12, 2012

Me and HPV



I recalled quite vividly the first time I had something going on with my bum, or as we say in America, my butt, my rump shaker, my donkey donk! You get my drift. After each bowel movement I would have this pain like someone threw gasoline back there and lit it with a light. So after a week of this happening I decided to self-diagnosis myself. I have to say that this was a time when I was very sexually active and in a way I thought maybe it was an after effect of the encounters. There’s a joke in there somewhere.
            But after a week and going on two I told myself it was no longer funny that something must be going on. Even the shape of my bowel movements started to take on this Picasso type shape. I didn’t immediately run to my HIV doctor as I didn’t think there were any relations. Also quite frankly at the time even though I was comfortable with my doctor, there was still a hesitant part about me that didn’t like to discuss my sex life? Was it because I was feeling guilty of having several sexual partners and the stigma of being classified as a slut? It was something that held me back as I didn’t go to him and instead self diagnosed myself.
            Doing my own examination I felt several small bumps and one medium sized one. I was relived as I told myself that it was nothing but hemorrhoids. This was an easy fix of just going down to the pharmacy and getting some over the counter cream. So after spending 5.60 and a slightly embarrassing purchase at the check out counter I followed the instructions and waited for the pain to go away. And I waited. And I waited. But the pain never went anywhere. In fact the bumps started to feel bigger. Perhaps my underwear was too tight and my rear couldn’t breathe. I was my own Doogie Howser MD.
            The funny thing about having HIV for years is that you get used to pain, whether it’s being pricked by a needle or certain parts of your body hurting. And in that familiarity you simply bear the pain until it passes. I was trying to do the same. In fact I lived several months with the pain as I just psyched myself up whenever I knew I was going to have a bowel movement. But when the blood starting to make a daily visit I knew I couldn’t pretend something wasn’t wrong any longer.
            The doctor told me right away what it was. HPV, or spelled out in its entirety commonly known as Genital Human Papillomavirus. Damn what is it about these acronyms that only I seem to get. What little I knew about it I just assumed it was something that only females get. Upon further explanation by my doctor he explained it’s not another gay disease but can affect those who have multiple partners and/or weakened immune systems. And also it’s not something that just shows up in the anus but in the genital areas. The tricky thing about finding out if you have it, especially if you’re a man is to just have a doctor do an anus Pap test as although there are tests for women currently there is not one for men.
            The crazy thing was that I probably had it for a while as according to information about HPV most men don’t develop symptoms or health problems. According to the CDC, “Since HPV usually causes no symptoms, most men and women can get HPV—and pass it on—without realizing it. People can have HPV even if years have passed since they had sex. Even men with only one lifetime sex partner can get HPV”. So my highly sexual active lifestyle was not the reason as again it states even having one partner doesn’t make you immune. In other words, if you’re sitting on a high horse because you have only one partner, still check it boo!
            But what do you look for? The following are things to look for:
·  Genital warts:
  • These will appear on the groin, thighs, penis, scrotum, or anus.
  • The wart may look like a lump, be flat, or have a cauliflower-shape.
  • Warts can appear a few weeks after contact with an infected person.
  • The warts may appear singularly or in clusters.
·  Anal cancer:
  • Bleeding, pain, or itching of the anus.
  • Discharge from the anus.
  • Swollen lymph nodes in the anal or groin area.
  • Unusual bowel movements or a change in shape of your fecal matter.
      I had my bumps removed with a quick in and out procedure. They returned a year later but since my last treatment nothing has returned. It still is recommended to make this a yearly endeavor and after my experience with HPV I have no problem being preventive. If anything HPV reminds me is that there are other STD’s out there besides HIV and it’s all about protection. And although we want to pretend we know more than the doctors, waiting until something gets to a bad state are not good. And that’s information you can sit on!  

Wednesday, November 21, 2012

In This Time of Thanks



As we celebrate the Thanksgiving holiday, this is a perfect time to reflect and recognize all the events and people that have brought me blessings this year.

            I first have to thank God. Being connected spiritually with him has made dealing with life so much easier. I won't lie, in my early days of my diagnosis I used to be angry at him, gave him the silent treatment and refused to speak his name out loud. But amazingly, he never gave up on me. He was always consistent through my inconsistency. And like the lyrics of the song states, "I never would have made it without you." And coming up on 27 years of living with this disease I know that he's there with me until the end and beyond. He’s given me rewards that no bank could ever hold.

            In a weird way there's a certain thanks to having HIV. Believe me, if given another chance I wouldn't want it but the fact is that I do have it and it has taught me the value of living a true fulfilled life. It has placed things in perspective and made me reflect on what is important and what is minor. It's given my life drive and a purpose. My cup runneth over when I know that the only person who can stop my dreams is me and I'm too busy building my dreams for me to be my own destroyer of my goals. It hasn't always been the most fabulous journey but it’s been more blessings than damnations. I've walked many trails and been able to walk through doors that I thought were closed to me, now opened for me to experience a true rich life.

            I thank the many friends and people I've met who has accepted me for who I am and not judge me for what lies in me. Those who have given me words of encouragement or affirmations and walked toward me and never showed me their backs. I'm also thankful for the people who are honest with their lack of knowledge and honest enough to admit it. We're sometimes learning together as the rule book is different for everyone who is positive, yet your openness doesn't bring offense but an opportunity to teach. And that learning is a two way street where I'm enriched by you.

            I also have met some incredible people who are living with the virus and they give me inspiration as they give me new challenges through their challenge. We're talking about people who speak publicly about their status, people who have run around the entire city of NYC or this country, not letting their status hold them back and those who stand in the face of stigma and faced it down daring anyone to deny them the same rights as others. The passion that you extend feed my creativity and fills my soul. You do what you do not for accolades but because it’s what in your heart.

            Of course I save the best thanks for last and that thanks is for the people who have put up with my ranting and ravings on the 20+ blog. You've let me be raw and naked with my emotions. You allowed me to not hold back and find a way to release built up frustration. Even when I come off as a Pollyannna you stayed with me.  Sometimes I've offended people which were never intentional but you calling me out on some of my writing gave me another way at looking at the subject. And I appreciate each bitch slap back to reality as I'm still trying to figure this virus out after 26 something years.

The greatest thing is knowing I helped someone or made someone feel like they were not the only one going through something and felt like they had value. You looked beyond the typos and found something you could identify with. In the sharing you've told me about your own struggles and each time I'm reminded that despite our status, we're all going through something but whether we face success or adversity, we can learn how to not just 'handle' it but to take advantage of it. If we want to succeed in life, I've learned we must learn how to make the most of both victory and defeat because we're certain to encounter both along the way.

            Oh and wait. I give thanks to one more person. That’s myself.  I my life could have went such a different route but I listened to the voice inside of me that let me know I was here for a reason. I thank myself for still dreaming and going after them. Yes some may have escaped my grasp but it hasn’t stopped my ability to push myself. I give thanks to myself for doing the one thing that we sometimes forget to do. That’s to live. To simply enjoy the moment and the space I’m in and embracing it. To live.

            For myself that’s the greatest thing to be thankful for.

Tuesday, November 13, 2012

William Brandon Lacy Campos-His Feet Walked Forward



When I signed onto Facebook Saturday morning I was prepared to post something witty about my need for coffee to get my weekend going. Along with the usual Facebook timeline postings I was expecting the usual praise to God, catching up on friends’ wild night and a few Instagrams of folks posing in the mirror. What I wasn’t expecting was to see a posting giving condolences to a friend who had passed. My heart raced and I immediately went to his page and there it was. A long list of people commenting on the passing of a great warrior. His Facebook page gives his full name William Brandon Lacy Campos but ask anyone and they know him simply as Brandon.
            Brandon who was anything but simple passed on late Friday. He was a truly unique man. He has been described rightly as a warrior, an author, an advocate, a blogger and most importantly he has been described as a good friend to all. He battled drug abuse, homophobia and wrote candidly about his HIV-positive status. As a gay man of color living with HIV he literally bared his soul for all to see and in that nakedness he exposed the many injustices that the disenfranchised had to endure. He spoke not just for gays and those living with HIV but he gave a voice for those who may have felt they had no voice. He didn’t use his male privileges with abandon but instead recognized that as a male with certain privileges that it was his duty to make sure women had the same rights. In his own words Brandon describes himself as the following, “a poet, playwright, journalist, amateur chef and life commentator doing his bit to put his foot in the asses of the regressive masses, while putting filling and nutritious food on plates of folks that ain't got much and deserve better.” And oh yeah he was a tough as nail feminist!
            I admire him mostly because of his writings on HIV. In this age when we still have so many living in a space where their HIV is so stigmatized, he refused to let anyone place him in a box. He was a intellect who could effectively communicate the life one has to live with HIV and not only point out the injustices of those with HIV but he stood there in the frontlines daring anyone to try to silence him that discussion no matter how uncomfortable it made them feel. He was a walking ACT-UP who may not have been the quietest person but that’s what we needed. Someone to get up in your face and in his words let you know, “We’re going to talk about this shit and the motherfucking train ain’t leaving until we all strapped in”. As a college educated man he had letters behind his name but he didn’t let those letters define who he was. He also didn’t just hang with only intellectuals but instead made himself available for all, no matter what road you walked. So whether you had a PhD or a degree in street smarts, he was there for you. He knew we all had a story to tell.
            Don’t get me wrong Brandon would do some crazy shit. Sometimes the postings on his Facebook page would be the perfect candidate for to much information, but in all honesty he did what a lot of us are so afraid to do. He lived. He made his life have meaning and a purpose and he didn’t forget to have fun. He loved to love and he loved to be in love. And that’s what I feel made people gravitate to him. Simply look at his Facebook page and you’ll see people from all walks of life. You’ll see a rainbow of genders, sexuality, countries and perspectives. And just from reading the last few days of postings you’ll see someone who took the time, which in this day and age of sometimes only communicating through social media, to actually connect with people face to face, person to person and cooking from his soul as he fed not only your stomach but also your heart.
            It’s a wonder how he made the time as he was very active in the queer community. Starting in his teens he was there giving a voice. In his twenties he co-chaired the National Queer Student Coalition. He sat on the board for the Audre Lord Project and was co-executive director of the New York City–based nonprofit Queers for Economic Justice. He was a constant blogger that brought up timely issues in his widely read blog, myfeetonlywalkforward.blogspot.com and as a fierce spoken word artist his book titled “It Ain’t Truth If It Doesn’t Hurt” which was published last year and I can hear Brandon saying, ”and guess what bitches you can get it at Amazon.com plus it’s in e-book form, boo-yah!” And with his Naked Poetry Series, he let it all hang out and left you with something to think about.
            I knew Brandon personally when I lived in Minnesota of which he also was from. With the state being 97.2 percent white us LGBT people of color had to find each other quick. I always joked that he followed me to NYC. That may not be the case but I do know that I followed him in his activism as he inspired me to start blogging and telling my own story of living with HIV. I was amazed that he was able to put it out there and in his words it gave me the strength to do the same. What Brandon did was throw a big rock in the deep water and from that he created ripples of people who were also inspired by him. I let him know this when I saw him at a performance we both attended.
            Brandon didn’t belong to me, to you or anybody at the top of his friends list. Brandon belonged to us all because his spirit is in all of us. With the heavy load of caring for people’s rights his blog was aptly titled my feet only walk forward as with such a huge load to carry he knew it was the only way to go. I hope me and others make Brandon proud as we pick up that load and be the voice of justice in whatever form we utilize but when we do it we do it in the spirit of my friend Brandon. And if we encounter people with closed ears and minds, “we’re just going to beat them silly with a piece of ham hock until their damn neck snap back into reality”
 I hope I got that right Brandon and thank you for inspiring me to be naked.                   

Wednesday, November 7, 2012

Sandy is Still Here



               I have to admit that I took Hurricane Sandy for granted. There was almost an expectation of the coming storm as you were hoping to have a three day weekend. Watching the 24 hour coverage of the red swirl as the meteorologist described the storm making its way up the east coast made me get prepared. Yet instead of making sure that we were stocked on basic necessities such as water and batteries, my preparedness came in the form of wondering what movies to watch and what sugary delights to bake in the oven. I even took my dog down by the Hudson River so I could see for myself the waves crashing on the shore as ships in the distance started to hunker down. Of course in this day and age everything we witness has to be filmed on our camera phone of which I was guilty of. Ironically the only one who had sense that day was my dog who gave me the look as if to say, “You seriously putting us in harm’s way to post something on Facebook?” As the wind picked up and my dog’s eye got wider, I got the point and made my way to shelter.

Then the storm came.

            Living uptown, except for the wind, it didn’t feel like there was a storm. Maybe because we were so entranced with watching the marathon session of Dexter that we were oblivious to what was going on outside. The most exciting part of the storm in our area was two trees that fell. One landed almost on top of a friend’s car and the other tree landed in the park that flattened two benches. Surrounding the tree were smiling couples holding their lattes as they took pictures of themselves next to the uprooted bark. At that moment it was all fun and games. Then the true effect of the storm started to come in.
           
            The hope we didn’t have to go to work came true but at the expense of the transportation system which was crippled in New York City. To put this in perspective, most people in the city don’t own cars as there’s a heavy reliance on the subway and buses that bring people to wherever they need to go. This includes those who are HIV positive. In addition many homes and business especially in the outer boroughs were either destroyed or heavily damaged and had no power. Within the city many agencies that provided services to HIV clients were unable to open for business as they also had no power or received extensive water damage.
           
            Stories are coming in of HIV clients who live in the Bronx walking for miles to parts of Manhattan to get the basics such as food and water, something that others like myself took for granted. Some agencies like GMHC tried to open on a limited basis as they had staff that couldn’t make it in with the lack of transportation or experiencing outages within the building. As one HIV agency puts it, they opened for a day and saw around 30 people, when they opened two days later it had doubled to 60. Here at GMAD clients not only had difficulties making it here to the agency but since the storm came the phones have been down and remain down leaving clients with limited ability to contact their mental health therapist or seek support in the HIV group they attended. Those who struggle with isolation are isolated from those who can help.

            Sandy had come-a-calling and she left reminders that she was here. Although it’s been a week since her visit the devastation of her visit is a daily reminder for many. I won’t say any one group was affected more than others but looking at those who are HIV and who falls in a low economic bracket you get a sense of the reality of what happened. Food and shelter remains something that is difficult to attain for many. Even in areas not hard hit by water, there are many buildings that have no heat as the weather starts to take a dip. Ali Forney, an agency that serviced homeless LGBT youth saw their space become uninhabitable and the haven where youth could find shelter, food and showers is no longer available. Then there’s simple the stress of it all. As people are still trying to get things back to normal they have the added burden of maintaining their health.

            After personally seeing the effect of Sandy I no longer take her for granted. The little inconvenience of standing on a crowded subway train that is finally working pales to what others are going through. As the more heavily damaged areas are getting the media coverage little is said of the men and women who depend on certain HIV related services. In this world of short attention span and with the elections now over we can’t simply move on and forget. But using the example of HIV members who walked from the Bronx to Manhattan it shows the reliance and undeterred spirit of not letting this storm stand in the way of their health and needs.

            I believe for those who are fortunate we can show the same. We can show this by contacting agencies that service the HIV community and ask what we can do. We can donate food, clothes, and our time to help bring back some normalcy. And this is the perfect time to check on our neighbors and friends and especially those who are HIV positive and perhaps offer a place where they can store and take their HIV medication until their housing which was affected by the storm, is resolved. Or as the days get shorter we can offer a candlelight of care and compassion to help illuminate that someone cares. The simplest thing we can do is take someone out for coffee and let them know you are there.

            As the saying goes when it comes to HIV we’re all affected. Hurricane Sandy has shown that we can’t take things for granted, whether it’s the services we depend on, the support systems we rely on or the people in our lives. By us reaching out we can help those help others. Let’s show Sandy who’s boss!

Thursday, October 18, 2012

Walkiing Into Positive



"I guess I shoulda known
By the way you parked your car sideways
That it wouldn't last
See you're the kinda person
That believes in makin' out once
Love 'em and leave 'em fast"
                            Little Red Corvette-Prince
            In writing about my life with HIV I’m usually asked when did I get infected rather than how. Of course it’s usually assumed in the how, despite the five ways of transmission that it was through sexual contact. Even in providing my answer it doesn’t provide people the full psychological scope of how one can get infected especially when it takes the simple act of putting on a condom. In my story it wasn’t that straightforward. I wrote a previous blog on how HIV prevention should move beyond handing someone a condom. In the telling of how I got infected hopefully you’ll see my reasoning.
            As a young seventeen year old person I was a quiet and shy person who kept to myself. Most of that was because of the low self-esteem. I would walk with my head looking down to the ground and it was difficult to look people in the eyes when chatting. It was almost like I was guilty and that guilt held my head down in shame. The guilt came from being a 10 year old victim of sexual abuse for over a year. Something I never shared with anyone and yet I walked as if it was my fault. Spending a childhood questioning what did I do to invite it? Ashamed event though I was the victim.
            I feel that as children we’re born with wings to fly but as we grow we have forces that come along and pluck the wings from our ascent, eventually leaving us grounded, afraid to reach for the sky. With all I was experiencing at a young age it was unfortunate that the way I was raised by my single mother also played another part in my search for self.
            I grew up afraid of my mother. Despite the fact I was a bookworm who never said much, she would unleash verbal tirades to me. Back then she must have suspected I was gay before I did as I was constantly called a sissy and told that if I ever grew up gay she would kill me. For simply existing I was often reminded of how favorable abortion was to her and her wish that she had one. I truly at one point thought my name was YoustupidMFIwishIneverhadyou Guess. I guess I was never meant to fly.
            In high school I was the class clown as I learned it was easier to hide your pain by hiding behind jokes. People who knew me in high school saw the class clown but when the bell rang and I walked home from school I was this walking insecure beacon of light.
At the time I walked the same route to and from school and would see this red corvette. The only reason it stood out was because of its bright red color. I also didn’t live in the best neighborhood as we shared our playground with prostitutes and drug sellers. So the clean color red stood out as everything around it was gritty and grey.

            As I was crossing a street near my home one day the red corvette stopped and inside was an older gentleman. He said hello and started to compliment me and it was something about hearing a compliment, hearing something nice even coming from a stranger, that made me open up. It was like after all these years of living under dark clouds; someone was willing to shower me with encouraging words. I was a flower blossoming open. When you don't feel value and you have someone giving value to you, no matter how they look and their intentions, you grab on to it like it's a twenty dollar bill blowing down the street and you hold on to it tight less it goes away.
            His words were so hypnotizing that it led me to get into his car, to be driven a few blocks away and finding myself standing in his house. I knew in the back of mind what he wanted but as a former person of sex abuse you sometimes have this perception that saying hello involves the giving of your body and not a simple handshake. Although I had never had a sexual experience, by the way I talked you would think I was an expert. It was truly my first time. I had heard about it but was curious on what it was and what it would feel like when I was in a willing participant. Because he was older and he said I was handsome, I trusted him. Because he said he we didn’t need a condom I trusted him. Because he would go away if I said no, I trusted him.
            Afterward I never saw the car again as I guess he got what he wanted and I was relieved as I was scared about what happened. I felt guilty. Like my father I didn't know his name
            A few months passed and I got sick like a dog. It was weird as I had never been a person who ever got sick. So this sickness was weird as for a week I was in bed. Not long afterward I saw a story in the newspaper of the person who I had my first account with. There he was trying to rob a bank and in the process of being arrested he told the cops he would bite them as he had AIDS. In my naive thinking I was shocked more that he tried to rob a bank and didn't focus on the AIDS comment at that time. When they say it only takes one time it's true I learned.
Little red corvette.
            Based on my experiences it was hard to find worth on a life that was treated as worthless. What happens when the importance of a person’s ideal of themselves without that guidance and value, can be easily lead astray? Would a condom have solved all my problems? Probably so but the way I felt about myself and the life I was living would have made it difficult for me to see why? I was in the basement of my penthouse life. I wouldn’t wish my journey on others but I know others journey has a similar direction. And I also know it’s easy to judge others without walking in that persons shoe. I understand and it took me getting HIV to find something that was denied me…my worth.

Thursday, October 11, 2012

How to Date Me



            One of the most common things you will hear about having HIV is finding someone who won’t reject you and will accept everything about you, which also includes your status. Dating or being in a new relationship is hard enough and by adding HIV you insert more levels of frustration. But with clear communication and expressing of feelings, two people with different status can make a relationship work. As a person who has been in a relationship for the past thirteen years I know that as a person with HIV I don’t have to date exclusively someone who’s positive and like my partner who’s negative, he along with others are educated and aware of the disease to not run when confronted with the three letter acronym. Yet even starting out in our relationship I couldn’t ignore the differences and at the time had to share with my partner valuable lessons on how to date me. Someone with HIV.

            First let me say that without the HIV I'm like any other complicated person with various level of maintenance which can go from low (sure I’ll try white wine with the steak) to very high (who left the toilet seat up) but when you do add HIV it can be an interesting and loving relationships that has it's own rules. In the courting moments of the relationship it’s important for the other person to know the following which I also interject with humor, something we all need;
1)      I don't wake up or go to sleep with HIV. Meaning that oftentimes I forget I have HIV and my more immediate concern may be wondering do these jeans make me look fat. So there's no need for a daily comforting “it’s going to be okay’ hug each morning and ending each night with eyes that say.”I'm sorry”. I’m sorry to but also in a weird way the virus has made me look at what’s important in my life and provided me a new focus. It's not that I’m using any avoidance techniques but frankly I’m doing the same as others, I’m living the best life I can. But please don’t stop the hugs as it makes good foreplay. And don’t be afraid to ask any questions that strike you as many times we’re both learning how to negotiate this disease in our relationship and we need to do it together.
2)      Don’t stress yourself with worry when I take my daily medication. Yes it may seem its cumbersome when I’m standing in the bathroom counting out the pills each morning and night or snapping open the daily reminder pillbox but this comes so natural to me especially being that I have been taking pills for awhile. I know that it looks intimidating to see the various size and shapes of the pills but most of the time when I take them they go down with no problem. My secret ingredient is milk so that’s why I get so fussy when you drink the chocolate milk. Plus it reminds me of when I was a kid. Yes a pill may sometimes go down the wrong way and cause a gag reflex but its not the norm so having your Heimlich experience up to date is always necessary but in the case of me swallowing my pills you don’t have to be at the ready. But please feel free to question me when you see that many days have passed and I haven’t taken it or I seem inconsistent. In that case call me out on my stuff as I know come from a place of love and concern.
3)      We don’t have to share everything. I’m very selfish with my status and I don’t want to share. So when I ask you to put a condom on please don’t tell me you're not scared. You may not be but I’m very cautious of not infecting you. It’s something we both should be mindful of. I also have the same anxiety when you want to share my toothbrush. I know it may be cute but there are small risks involved that I don’t want to chance. But there are plenty of things that we can share involving no risk at all and has no possibility of exchanging blood. That list includes sharing ice cream, your portion of the basil chicken duck, the remote and anything else we have in union. And please don't be stingy with the kisses as we’re sharing each others heart.
4)      I get sick but so do others. This is the tricky part of dating me. The following may be confusing but believe me when I say it'll start to have some resemblance of sense. When if comes to my status I don't want you to call 911 when I sneeze or tell you I'm tired. The truth is that everyone gets tired and yes they sneeze. But sometimes people forget that it’s a natural behavior and not reserved to those with HIV. So my status doesn't make me anything special. Of course if I'm tired more than normal or have any other symptoms that last for a few weeks then we can get worried together. And remember when I say it can be tricky, here's what I was referencing to; I don’t like to be smothered but I like to be smothered. While you scratch your head I’ll explain.
Because going to the doctor is such a common trait of having this virus, with some going once a month to every three months, don't get offended if I tell you that you don't have to take off of work to come with me. Not that I don't want you there but it's not really a huge production. You'd be surprised on how uneventful it is and in most cases it's the same dance with the doctor. It most often goes like this; check-in, give vitals such as blood pressure/weight, let him/her know if refills need to be refilled, rinse and repeat until the next appointment unless there is a need for anything out of the norm. I know you’re there with me in spirit. But if it makes you feel better just know that I treat myself to a shopping trip afterwards as reward so I often look forward to the doctor. A treat kinda like the chocolate milk.

5)      And the last piece of advice is to breathe and let’s have fun in the relationship.


So there you have it. That is how you date me. Someone living with HIV. I think it’s pretty simple. And if we’re like any other couple we will have disagreements over couple stuff but when it comes to OUR HIV, with clear communication and knowing each other we have made it work. And I know we’re not the only ones and it’d be great for others to share so that those with anxiety can see it’s possible to be in a relationship. How have you as a HIV positive person found love with your status?

Wednesday, October 3, 2012

Looking Beyond HIV




            Much has been mentioned about the fact that many African-American men especially youth are getting infected in growing numbers. For those who are noticing many are scratching their heads asking why is this happening especially in this day and age when almost anyone can get a free condom from anywhere at anytime. Not to mention the abundance of prevention messages that are displayed all over major cities from billboards to posters, pamphlets and so on. What has created a deaf ear to a matter that is still relevant in communities of color? I won’t say I have the answer but speaking for myself, even as one who has been positive for 26 years I sometimes even get tired of hearing about HIV especially when as a person of color, HIV is the only time when I’m made visible.
            When it comes to HIV prevention the one thing that seems to be missing is something I call the 360 approach. In this approach all aspects of a person of color life is looked at. Instead of throwing a condom in their hand you first see what does their world resemble? What are their life circumstances? What societal barriers prevent them from getting the message? Is it poverty, homelessness, unemployment, racism? How do they identify if they do? How do they view themselves and do they feel they have any worth? This is important because if I don’t feel I have any value mentally then how can I put value on my physical self?
            Yet often a 360 approach is never used when it comes to reaching black men and informing them of the realities of HIV. In fact by excluding the 360 approach, most of the messages reinforce that the only value black men have is connected to their sexual act and to be more frank, their body part. With the lack of visual representation one can see an uneven arena of marketing where in the displayed absence of black men they are only fully represented with references to sex.
            One of the aspects of 360 is helping black men realize that they are visible. That their worth goes beyond their sexuality. That as black men they have legitimacy in the feeling that they are disenfranchised in a system that was not designed for them. In looking at the effects of media and its contribution to young gay black men searching for meaning and information on their emerging sexual identity it adds to feeling of invisibility as often there are no persons/images they can look to model or emulate. Some in that search for identity often find only sexualized images of gay black men and feel that this is the definition. Looking at the HIV infection in gay black men, this sexualized definition may be one of the reasons for infection as their only process of being visible is to have their body be the dialogue of expression.
            When it comes to people who look like me, even removing my sexuality, the absence of my voice in the media is so pronounced. I can flip open magazines such as Out or Details and I’m nowhere to be found. I look at the television and amongst the storyline on Glee and Modern Family I look for the telling of my stories and come up with a channel full of static. Actually in all fairness people will point out that Glee currently has a black character that has yet to express their sexuality but by his mannerism it’s assumed he’s gay. As is often the case when it comes to the combination of the words gay and black, if it’s an image in the mainstream, that person more than likely will be stripped of his masculinity and placed in a dress which is the case of Glee. What does that tell you when the only reference people can think of to any visible gay black men is RuPaul telling us to ‘turn to the left’ and ‘Sashay Shante’. Unfortunately he still remains the most visible representation of gay men of color. Yes I know there’s now Frank Ocean but most uninformed of pop culture will not know who you’re referencing. And besides his timely announcement which coincidentally was timed to his album release shows an important chance to add context to a discussion but instead was wrenched into a marketing tool.
    Even if I allow myself the pleasure of going to the movies, I come up absent as what I see are larger than life images of black men who roll their eyes and are a guaranteed source of laughter. But as stated before I know that the one place I will be represented is in an ad or poster with a man of color telling me to wrap it up or better yet now that he’s on HIV medication he’s jumping in the air because we all know when you take HIV medications that’s the first thing that comes to mind. (Slight note of sarcasm)  
            So in this discussion of HIV many prevention specialists have to understand that before gay black men can even think about HIV many are still trying to grasp three important questions. What it means to be black? What it means to be a man? And what it means to be gay, in that order. By just jumping to the last definition your message of prevention is perhaps the reason it falls on deaf ears.
            The biggest threat is the cloud of complacency. After so many years of pigeon holing gay black men with one message, we have to realize that it’ll start to have the opposite effect. We have to broaden that message and talk about depression, talk about mental health, talk about relationships and most importantly talk about the ability to love one self.
            In closing I do have to say as black men, no matter how we identify we must step up to the plate and not only make ourselves visible but also find comfort in our masculine role and see it as a source of strength and not weakness. We have to see where we stand in the 360 and what responsibility we have. For those who are comfortable with their identity, the greatest thing is to be a role model for a young gay person of color. And maybe in that bonding they will say, ‘so that’s what it looks like.” And in that responsible role help illuminate to what seemed to be intangible to some. And realize that the person you speak to is way more than the prevention message and has more value than the free condom you can get at the clinic. 

Wednesday, September 12, 2012

You Got A Friend

        As a dear friend celebrates her birthday, I reflect on the value she added to my life and celebrate a friendship that made having HIV easier to bear.      

         I slowly knocked on her door which was unusual for me as usually when I showed up at her door I would give the door a rapid loud knock with a "Yo what's up It’s me! But this time my knock was quiet. My best friend Tracy opened the door and although I tried to put on a happy face she could always read me and knew I was putting on an act. Since she had already had someone over visiting she brought me in her room for privacy. We sat on the edge of her bed and she put her arms around my shoulder. Up until that time I felt I like was all alone in the world but that simple contact between me and her opened up the floodgates of everything I was hiding. It was so powerful because up until then I didn't allow anyone to touch me or hug me as I felt dirty. Even if it was the shaking of hands I didn't want human contact. It had been two years since I was told I was HIV positive and I never told anyone, not even myself. I was scared. I was scared no one would love me. I was scared of the rejection and I was scared of the secret I carried. And although Tracy and I had been good friends for many years, I was scared of what she would think because she was a rock to me in this crazy world.
            With no melodrama I just told her I had HIV and the tears fell like a monsoon, and the hug she gave me didn't get weaker but stronger. She held me like I was a baby which is no surprise since I was crying like one. I was no longer in this battle alone.
            Tracy and I had a unique relationship. I met her in high school. I was a sophomore and she was a junior and she didn't know why I was always buzzing around her like a mosquito. If she had a can of bug spray she would have showered me in it as I was working her last nerve. She couldn't stand me, but for some reason I kept stepping in her shadow. Maybe it was intervention or she was simply tired of telling me to go away but we started to hang out. Most of the hanging out was playing hooky from a class or watching horror movies screaming in each others arms. We had a common interest in music and would just bop our heads to songs like Midnight Star , "No Parking on the Dance Floor, Isley Brother's, "Between the Sheets" and The Dazz Band "Joystick". Even when she graduated I was there. I showed my friendship in crazy ways, like making sure she got home safety which meant following the city bus she was on for miles while riding my bike behind it.
            Outside school we were an 80's version of Bonnie and Clyde. We were always in shenanigans. Nothing harmful, just things like grabbing everyone's circular from the apartment building as inside were a coupon for free cases of soda and we took turns going in the store until we had cases or going to a restaurant and even though it wasn't either one's birthday I would let it slip to the waitress that we were celebrating her birthday just to get a free desert. One time I unknowingly to her at Chi-Chi’s, a Mexican restaurant let it slip it was her birthday knowing it was a lie. The minute we finished dinner the whole staff came out with instruments and balloons, clapping and singing "Happy Birthday". One of them had a Polaroid camera and we had to pose for a picture as they put a huge sombrero on her head. Talk about embarrassed and the look Tracy gave me I just knew it was the last time we were getting free ice cream on her or anyone’s benefit.
            I always said if anyone truly wanted to know the complete me to ask Tracy because we shared it all. Disclosing my status made me feel less alone. It’s a scary thought to make such a disclosure no matter how close they are to you. But I felt the scariest thing for me was to do this alone, something I knew I couldn’t do. Admittedly I didn’t share with Tracy right away but it was one of the best decisions as it showed me what unconditional love looked and felt like. If I can give any advice to anyone who is keeping their status a secret I would say you'd be surprised at who will not reject you and most of all you'd be surprised and embraced the unloading of the burden.
            God has so many angels out there and for me my angel name was Tracy. So thank you Tracy for the laughter, the memories, the tears and your acceptance of me flaws and all. You've shown me what a true friend really is!! And most of all you showed me that I am not in this world alone. The greatest thing is that she probably never knows how special that moment meant to me and in that moment she changed how I felt about myself and helped me to live moments filled with love. Thank you Tracy and Happy Birthday!


Wednesday, August 29, 2012

I Want Your Sex....Not


          As a person who always went to the gym on a regular basis, every so often I would get a flattering remark on how I looked. It was nice to know the workouts were paying off but getting compliments wasn’t my primary reason for going. As someone who occasionally had issues with anxiety, going to the gym was a great way for me to relax and find my center. I could always tell when I missed too many days at the gym as the feelings of having too much to do and little time to do it would wash over me.
            I want to say that my muscle gain came all from my heavy exercising but there’s also a little bit of help that I get that I don’t readily let people know. My little secret called Testosterone comes in a small vial and involves a bi-weekly injection and is part of my regular regime of staying healthy. Some may ask how is having muscles helping with health but the truth is Testosterone for me was not for vanity but to restore a natural hormone that my body stopped producing.
            I discovered this during a time when my energy was flatline. It seemed like to do anything took effort. Initially I thought perhaps it was depression based on the mood I was exhibiting. But unlike feelings of depression I wasn’t sad or felt down. I just didn’t want to do anything that involved using my strength. I would go to the gym and where once I would be rejuvenated I now had the feeling of ‘why am I lifting this weight up and down?’ Another thing was that my sex drive was doing 5 in a 55 mile per hour lane. When it came to sex I just didn’t have any desire for it. And this was when I was in my thirties, still in my peak. Were my glory years coming before I was ready for it? What was going on? And add to that my growing irritability and I become a person that I didn’t even want to be around.   
            It was during one of my regular scheduled appointments when I was checking in and telling the doctor how I felt that he decided to test my testosterone levels. At the time I didn’t know too much about testosterone. I just knew that it put hair on your chest and bass in your voice. I was never good in biology. He assured me it was much more than that and it was important to check it. So after drawing blood and getting back the results I was told it was way below average. Oh crap I guess not going to the gym was now coming back to bite me. But in fact that was not the case as the gym didn’t have anything to do with it.
            The truth was that diminished levels of testosterone are common in HIV+ men. The incidence of low testosterone increases in men who have lived long-term with HIV. To compound the problem, it's normal for the body to slow production of testosterone after the age of 40 regardless of HIV status. As I was officially a long termer it made sense that what I was experiencing was associated with my levels.
            So even though 40 is the benchmark, when it came to HIV you could be much younger and not be aware that your body has slowed down the testosterone factory line. It’s even harder to know as there’s no physical fuel gauge that you can let you know you that you’re running on a quarter tank.  
            I was offered several ways of replacing my levels- either by an injection, a patch or gel. Since the shot meant I would have to visit the doctor every two weeks I went with the easy solution; the gel. It was no doubt easy but I always felt like nothing was changing. Plus I didn’t like it leaving a mess on my clothes. Yes I’m fussy like that. The patch was also a no go as it seemed to have nil effect and there was the embarrassment of having this thing clung to your leg as your changing into your workout clothes in the gym locker room. So the shots were the best solution. But it was good to know there was more than one option and just because one thing may not work there may be another route.
            Anyone getting treated for low testosterone will use a different technique but one thing that may be similar is what I call the roller coaster effect. When you initially get the shot you get this energy boost as if you could lift the world. After getting my shot I knew what Popeye felt like when he slammed down that can of spinach to protect Olive Oil. But then that feeling slowly subsides and you get back to your regular self. By that I mean the life I had before where I was energetic and frisky, it all came back from the darkness. I was truly myself again.
            With the doctors help I now administer the shots myself. And I’m glad that I shared with my doctor as I thought I was going crazy. Like I said in the beginning yeah there are some benefits if you work out regularly but after managing this disease for so many years I’m not going to knock any benefits I can get from it. Here’s to a better and fitter me.     

Monday, August 6, 2012

Positive Plus Positive


         I recently had a discussion with a friend who like me was HIV positive. He was excited as he recently met someone new and unlike his past several relationships he felt that this was going to be the one. Despite the fact they had only been dating for two months, for him wedding bells were ringing and he was ready to give himself fully to this person. Despite how I felt he was rushing things and knowing how hard it is to find someone in this crazy world, I had nothing but good wishes. My friend was always one to divulge too much information so I wasn't prepared when he shared how they were choosing to not use protection. He then shared that his new boyfriend was also HIV. So putting the two positives together, he felt was no need to worry and also no need for any type of protection.  

            It was important for me to not come at his relationship with any type of judgement or to put my own baggage at his feet. Mostly because I understood where he was coming from as I once had the same belief that once you were diagnosed HIV positive you no longer had to be safe. The reason I felt that way is because everyone’s opinion on this topic seemed to differ. Some will tell you as long as you’re both undetectable then it should be okay. Others gave good points on why it wasn’t a good idea and even more came with dialogue on why it was okay.

            It was hard to talk to him based on the various beliefs and theories on the science of whether two positive people should forgo using condoms during intercourse. Before I go any further I’m going to state a disclaimer and say that the following is just my own belief and also maybe a little bit of Googling on the internet, but in no way what I write is the definite answer. 

            Myself I advocate that two people who are HIV positive practice safe sex. In a way it eases any fear you may have of getting re-infected. Like I stated before I didn’t readily know this information so some of my earlier encounters was filled with fear and what ifs instead of enjoyment. With no clear answer I decided it wasn’t worth taking the chance. My body was having enough time holding my own virus at bay and now I was going to open the door and make room for more. Homey don’t play that!

            The reason I advocate for protection between two HIV positive persons is for the following reasons. The danger of being re-infected I felt was very much real. At the same time it didn’t meant I avoided those who were positive. I surely didn’t want to join the chorus of those who reject people based on their status, but choosing to protect yourself is more along the line of being smart. My motto was, ‘you can protect and not reject’.

            Knowing the virus comes in different strains should be one motivator. For instance my HIV virus may be different from your virus and by sharing body fluids, before you know it my virus which I called Clark Kent now has a cape and now I have a Super Infection as it flies away in my system doing damage. The chances of being re-infected are also real when you’re taking medication. For example, I am being treated for HIV and my medications are working well. Then I have unprotected sex with another person living with HIV and get re-infected with their strain, one that is resistant to most medications. Over time, that new strain will flourish in my body, rendering my once successful treatment useless. Eventually my viral load skyrockets and my immune system pay the price. 

                The second thing to take in consideration, especially for my friend who had just met his new boyfriend and even though he’s know him for two months, although HIV is the dominant reasoning, you also have to take into consideration that it’s not the only guest at the party. There’s other STD’s that have to be taken into consideration and although some may be treatable, is it worth it especially knowing you can prevent it? Especially in this environment when other STD’s such as syphilis and gonorrhea are on the rise and gonorrhea is becoming resistant to medications.

            The good news is that you can have a great sexual relationship with another positive person and still be safe. My last relationship was a great one as he was also positive and in that relationship we supported each others health and that included our sexual health. Just because we entered a relationship didn’t mean we had to discard our education on safe safe.  If anything it was more exciting as we learned and explored new ways to be intimate with each other. We sometimes buy into the belief that safe sex is boring or it’s like eating a saltine. It may start out as a saltine but so much more can be placed on it that makes it exciting, reinvigorating and a wonderful experience.

Thursday, July 26, 2012

What's Going On!


         After reading some disturbing news I went to our 10th floor office window that looks down on Downtown Brooklyn and couldn’t help myself as I screamed out in the air, “What’s Going On!’ It wasn’t a sing-a-long to Marvin Gaye’s signature song rather it was a frustrating cry of attention to the brotha’s who were passing down below. An honest guttural reaction that came from a person who just read how black men like me continue to be the face of HIV/AIDS and wondering after 30+ years why are African American males so heavily impacted. And as this news is brought forth where are the other voices screaming out. Why is there such a deafening response of no response?

            The report I’m referencing was just released at the beginning of the International AIDS Conference being held in Washington D.C. The report released by the Black AIDS Institute titled, “Back of the Line: The State of AIDS Among Black Gay Men in America," paints a vivid picture of the growing epidemic in the black communities. According to the report in some cities one in two black men who have sex with men are HIV positive. The report goes on to state that looking at the entire United States, one in four new infections occur among black men. Would it be to over dramatic of me to compare reading this to reading a horror book by Stephen King?

            Kidding aside what we have is another wake up call that when it comes to HIV prevention, black men are not hearing the alarm. To quote the movie, there is really a failure to communicate but unfortunately that miscommunication is resulting in a disease slowly ingraining itself like a deep rooted weed into communities of color and what’s worse is that the weed is left to grow unattended.

            Perhaps one of the reasons for the continued rise is that there’s an acceptance that black men are always the ones infected, a growing complacent that is sweeping the cities and rural areas of this country. I say this as there’s no press release from elected officials concerning the report. No major media outlet has it as a breaking news story ticker –taping its way across the screen. There’s no “We Are the World” moment of celebrities bringing awareness as those moments are saved for those outside the borders of the United States. A realization that it’s expected. What’s going on!

            Rather than repeat the information that the report provides, in summary it states that African-American men are increasing their rate of infection. A question can be asked why it takes places like Africa to have similar numbers for people to take action. A bigger question may be why is such a report with huge disparities simply accepted and why no call to arms not just from the black community but all communities. Is this a Kayne West moment where he made his infamous statement during the New Orleans Hurricane tragedy claiming that ‘George Bush doesn’t like black people’ only now replaced with new language claiming that ‘America doesn’t like black people’ or if I can get more deep and make the bold statement, ‘Black people don’t like black people’?  Are we as a country hiding out in a Superdome ignorant to the fat that the roof is blowing off over our heads? Or has the waters of HIV become so deep we feel there’s way to save them all.

            Have we just given up on gay black men? In the tone of Mrs. Romney, have we told ourselves we created all the HIV posters for you people, supplied you with all the Magnums condoms, and provided all the incentives for you to get tested? Feeling no other efforts is deemed necessary, as we tell ourselves that it doesn’t involve me.

            Have gay black men given up on themselves? Telling ourselves it’s not a matter of if but a matter of when so why let HIV prevention messages soak into our consciousness? Have we truly lost value in ourselves and each other that we don’t wrap before we strap? Or do we have ears plugged with the sounds of poverty, racism and stigma to not hear the message that our lives matter or maybe that’s the problem. We’re tired of hearing the message. We want to pretend it’s a song for someone else.
           
            Has the deafness of this tragedy afflicted the gay community in general as there’s no room to discuss HIV in the black community as the agenda has switched to one of gay marriage. HIV becoming an afterthought that no longer requires us to chain ourselves to government doors demanding they do something about this? Has the deafness prevented the black community to storm the doors of local state and city funded HIV agencies and ask what is being done with our monies that fund HIV prevention programs and why are we not starting to ask for refunds on a product that is no longer working or at the very least question why it’s not working?  

            I know I’ve been asking a lot of questions and not giving many answers, or rather not joining the chorus of intellects who have the answer but can’t apply the solution but let me just extract one remaining thinking point. Can the absence of reaction be a rationale as why HIV doesn’t make a difference when it affects gay black men? If the silence is an indicator it may not be an excuse or provide the reason but it may give us all a second thought that in the struggle for equality and gay marriage we should leave room on the plate for something that’s not going away soon. We’re all affected and infected when it comes to HIV and the growing rise amongst African-American men.

We need to all yell out the window and ask, ‘What’s Going On’ and make sure that the question doesn't fall on deaf ears.
To see the original report click on the link below and a PDF will open

Wednesday, July 18, 2012

5 Things I’ve Learned About Having HIV


As I reflect back on the diagnosis of my disease I can honestly say it has changed me and my perception of life. I may sound like a broken record as I harp on when I first learned my status 25 years ago, but back then it was a different disease. Back then there was no certainty of how long you would be on this earth. The stigma was much more pronounced as people rallied to stop kids with HIV from going to certain schools or swimming in public pools while family members feared the toilet would get them infected from a positive family member. Yes it was a different time.
            But after all those years I have learned much. I learned not only about the disease but my ability to look at the positive aspects of it and enjoy a wonderful life. It was lessons I wish I knew but now that I know I would like to share with others. I call this the 5 Things I’ve Learned About Having HIV

  1. It’s Not a Death Sentence
                  When I was first told my news I thought for sure I had only five years left to wrap up all affairs as I felt I was soon to be leaving the earth. I used Dick Clark New Year Eve’s celebration as my countdown. I just knew each drop of the ball was going to be my last. But a funny thing happened on the way to the forum as I got to experience more New Year ball drops and the death sentence I gave myself was no longer there. I realized that HIV doesn’t mean death. Of course it’s not the easiest road to navigate but what is life without challenges. Along with adopting a healthy lifestyle which included diet, exercise and treating my body like a temple and not allowing negative substances such as drugs, food and people, invade it, I was on my way to living a blessed life. And after 25 years I am not a long term survivor but in a long term position to live the best life one can.
 
  1. It’s Okay to Cry
                  I didn’t cry when I heard my news. Not that I was trying to be macho but I just didn’t want to give the disease the luxury of breaking me. Tears that should have fell, I kept them behind a wall and my smile was the outside gate that gave one the impression that life was good. I don’t know when I had my first cry, but I know that all it took was one hole from life to poke that wall and the dam burst open. The wonderful thing was that instead of feeling like I was lost, I instead felt freer. It was like my tears were a monsoon that rained down on me and washed away all my pain. At that point I gave myself permission to cry. Having any type of disease is something we’re not used to and if we cry, we have every right. Even now I give myself permission as I’ve earned those tears, but I’m careful to not stand too long in the flood. Crying is not a sign of weakness but can be a cleansing of the soul that makes room for good things. It’s okay to cry.

 
  1. We Are All Stigmatized
                  When I make this statement I don’t mean to say that we should accept stigma. I say it in hopes that others don’t let stigma be a barrier to their happiness. I know from my own experiences how people can be ignorant and show it either by their actions or the words they choose. I learned that if I let people’s words direct my life I would be on a path of their choosing instead of mine. I learned that you will be stigmatized because of HIV. But you’ll also be stigmatized for your gender. You’ll be stigmatized for your age, your race, your height, hell even for the clothes you choose to wear that day. People just love to stigmatize as most have to put a label on you or find a way to place you in a box to understand you. And most of us fear what we don’t understand which results in stigma. As my mama would say, “Do You”. Live the life you want to live.

  1. You’ll Actually Be More Healthy Than Others
                  This has a caveat but people with HIV can be healthier than those negative. That’s only if you maintain a consistent visit with your primary HIV doctor. A benefit of regular visits is that along with managing your HIV other health factors are examined. Often you find yourself being proactive rather than reactive. For myself I learned about certain ailments that were not connected to my status based on my doctor visit. One of the situations was when I learned my Vitamin D levels were extremely low. A low Vitamin D afflicts many African Americans and is one of the reasons behind heart disease and diabetes. And again you don’t need to be positive, but you do place yourself in a more healthy position by addressing it sooner than later, something many negative people don’t do.

  1. Someone Will Love You
                  One of the hardest things about learning your status is feeling that no one will ever love you. I felt that way once when I was told the news. I thought I was going to always be alone. Scanning personal ads you would see people looking for attributes they preferred along with things they didn’t want- ‘no fems, no fats, no +’.  
Makes you feel like a leper. But love is an amazing thing because it comes when you least expect it and the greatest love is the one you give yourself. That love radiates and makes others want to love you. Living a bitter life only attracts rotten apples and bad intentions. By giving myself the gift of love I have found a great soul mate and despite my circumstances as a negative person he accepts me flaws and all. But I learned that I also had to accept my own self. And 13 years still going strong.

I know there are many more lessons for me to learn but these were the top five. Maybe after reading these, others can share what they have learned. I know for myself I learned my lessons from those around me and it has all added up to make me a better person. Happy New Year!

Monday, July 2, 2012

Lessons Learned Starting a Pride Committee

               As we exit the month of June and the celebrations of Pride month, many organizations are already in the planning stage for 2013. Along with the established groups and with the winds of tolerance slowly shifting to acceptance to the LGBT community, there are some organizations that may be coming to the table for the first time to give birth to Pride events being celebrated in their area.  Being one of those who sat at a table to make Pride happen I learned several lessons and of what to do and not to do. I want to share my personal experience and reflect of what I call the rise and fall of my gay black Pride.   
              I was fortunate enough to be a founding member of a group of like minded people who wanted to start a gay black pride committee in Minnesota. At the time there was already a collective of people who had started a pride organization called the Minnesota Gay Black Pride. This organization was responsible for organizing black pride events for the Twin Cities area. As a person not part of the organization I was one of the initial groups of people who felt that the organization could be doing more. There were others in the community who shared the same feeling and felt that there were things that should have been done differently.
            In other words we were the back seat passengers who yelled out directions but didn't want to help steer. Opinions differed on what the focused of Pride should be especially when it came to gay black issues. Some felt that there should be a focal point on the rising rates of HIV/AIDS and other health disparities plaguing our community. While others felt that we simply needed to celebrate as we were becoming sore from getting hit over the head with messages of how we should wear a condom.
           Pressure was placed on the Minnesota Gay Black Pride to address these issues and provide something that everyone could enjoy. Yet doubt existed if the organization could make something successful happen as not only were their expertise questioned but also there were rumblings that monies granted to the group to stage Pride events were being misappropriated. With the building mistrust, I along with a similar thinking group of individuals started Soul Essence, a gay black Pride planning committee that would focus on health issues combine with showcasing the arts in an African Diaspora way.
         The Minnesota Gay Black Pride wanted to collaborate for the benefit of the community as they felt it would only makes us stronger but because we were set in our ways we didn't see the bigger picture. Maybe if we had we would have seen all the signs and learned the lessons that the Minnesota Gay Black Pride had experienced but as my mother used to say, "You make your bed, you lay in it". Despite our initial first and second year success, we soon followed the same road map that lead to the same demise of the Minnesota Gay Black Pride. From that experience these were the lessons I learned and hopefully it can help other grassroots pride committees, no matter what race, as they plan for next year. Lessons learned were the following:

It's Always About the Personalities   
At Soul Essence we had a good group but like any other there were some disagreements over something that was usually petty. It eventually got to a point where we couldn't work with certain people as we focused on personalities and not performance. Organizations can be easily divided by very simple but deeply divisive things.  Sometimes it's as simple as personalities clashing, someone feeling disrespected, such as being called a name or some other word that makes you puff out your chest or bare your claws. Or maybe during a night at the club some member talked 'shade' about another and it got back to him/her. Rather than respond like responsible adults and work out the situation, most times people are so offended  that they decide to create their own Pride organization, usually pulling members from the other group. The loser in these situations is usually the community because they have to decide which group to align themselves with.  And instead of something being stronger, we are overall weaker because of this division. Ironically, pride gets in the way of Pride.

We Don't Need No Stinking Business Plan
     What's great about grassroots efforts is that they literally start out of nothing.  They usually have very little (if any) money but plenty of passion to fuel them. This is how successful organizations start. The passion and mission is clear and the dedication to make it successful is so strong that you can get a great group of people with various skills willing to make it happen for free. That's great but in the end you are still operating a business. And like any other business you need people who have some knowledge of how to make a business successful and the tools to make it succeed. You have to also find the strengths and weaknesses of each person and place them in roles that will benefit the group. So, if a person is great at grant writing, it makes no sense to have them as the secretary taking notes at each meeting. Playing to strengths will not only benefit the organization but it will make people who are volunteering feel like they are meaningfully contributing to the mission.

Get Those Volunteers
     For me this is one of the greatest things I wished we would have done ourselves. Along with the consistent members of the group, for small events you need outside folks who can help out. Even if it's just for that one event it lessens the burden and frustrations of an already stretched thin committee. It also helps to alleviate some of the frustration felt by some members when it comes to the actual event.  Oftentimes people can feel like they are always doing way more than others in the group. This is especially frustrating when you have a full-time job outside of your volunteer time at a Pride group. From the beginning, start reaching out to people to get them to volunteer. A big key to having a successful volunteer program is always making sure they feel happy and heard. When someone offers to volunteer, respond right away!  Not when you feel like getting back to them which could be a couple of weeks. By then that person may no longer be interested or feel you don't need their services.

Don't Sleep Where You Work
     In our organization we had partners or lovers who served on the same group. Several times there were cases when the partners would be having problems in their personal relationship.  This would result in the tension being transferred to the group and putting everyone in the middle of a lovers' quarrel.  Instead of planning events you're putting out fires or handing out Kleenex. Not to say there shouldn't be partners sitting across from each other to help plan Pride but recognize that conflicts may arise and that couples should agree to keep the home issues at home.  And if you really want to see sparks fly, have board chair directly supervise their loved one. I guarantee there will be fireworks or feelings of favoritism from others.

And the number one thing that will destroy your efforts-

Money
     There's a saying that if you really want to wipe out a grassroots effort. Give them money. Don't get me wrong as money will help move forward your mission but just know that with the rewards also comes some disadvantages.  It's amazing how the dynamics will change as people who were volunteering their time will now put a worth on their contribution and expect to be paid that amount. And it will never be the same amount of other people giving their time. Also, don't put someone in charge of the money who can't manage their own personal finances. In other words, if they can't pay their own bills, how do you expect them to pay someone else? Complete transparency is needed to lessen any accusations of mismanaging funds
Sadly the one thing we accused the Minnesota Black Gay Pride of doing, abusing donations, was also the same thing that Soul Essence was accused of which lead to its demise. 

       Finally, with all of this I'm not trying to say don't put together a pride committee. In fact, we need Pride celebrations more than ever.  Especially in cities that are underrepresented and have never had a Pride event. My true objective is to help others not make the same mistakes we did. And while my experience in this was with an organization focused on the LGBT black population, this can happen to any new start-up. Nothing comes easy but if I had known what I knew before we started Soul Essence, maybe things would have been different and we would have celebrated pride in 2012 and now be planning for 2013.

     If you've helped start a Pride event/committee, please let me know if you think there are things I've missed or (even missed the mark on).  Your comments will help not only me but someone looking ahead for Pride in 2013!