Even Today

Today I met with UF Health CARES only to find out that my paperwork from Daytona was not conpletely faxed across. I couldn't prove that I ever had a registered viral load. Too the doctor that reviewed the portion of the test that came across the fax it looks like I have always been undetectable.  This one mistake made my entire visit there non-productive. I had to have my blood drawn to get a new proof of positiveness letter and reschedule my appointment for 2 weeks away. This is rather disappointing because that means it will be another two weeks before I am finally enrolled in Ryan White services.  I can tell you that the visit wasn't entirely a waste. I met Brandon during my visit, a highly intelligent young man who besides being heterosexual, he was also born with HIV.

Though we didn't have as much time I would have liked. I got to discuss a bit of his story as I told him my own.  One thing that I was capable of doing was answering many of the questions that he had.  I am amazed that even today persons with HIV can still feel prejudice and stigma. Which can trigger deep depression and feelings of fear, persecution, alienation. All of which can instill a deep and abiding sense of worthlessness and a lack of self-worth.  Which according to Brandon has often made him feel as if he were a burden to others and unlovable. 

His most relevant question for me was how do I stay positive and grounded? Luckily for him I was asked almost the same question not an hour before by the social worker for my primary care team at the VA. My answer to their question was simply that first I don't dwell on my illness and second that I use my blog as a sort of catharsis.  That's right my coping mechanism is writing in my blog as well as telling to others my story every chance I can.

Like Brandon, I still deal with stigma and fear. I also know from our talk today that fear is a constant companion. Like me, we both fear how others will react to our disclosure of our illness. How others will receive us.  The fear that others will reject us and thus diminish our hopes for a relationship. There are now treatments that a mixed couple (one poz and the other not). This maybe an option for some. But what if your potential partner isn't willing or not educated about it.  However you decide to handle this dilemma is up to you.

But there is a whole lot more to Brandon than meets the eye. He feels compelled to help others, he has dedicated himself to the expansion of HIV research. In his own words he felt like he had a debt to pay becausr of everything he went through and his still being alive. With that debt in mind he dedicated himself in his sisters memory to constantly trying make a difference and help those around him.

Whether we want to accept it or not fear, misconception , stigma and prejudice still persist today. There are groups like the positive champions speakers bureau that work hard to stem these injustices and seek to educate and elighten the community of the truth of this disease. Back in the 1980's and the 1990's HIV/AIDS was headline news. There were marches, charity drives, concerts and an outpouring of information. Now,  there is barely mention of AIDS Related death's and one rarely hears of the infection rates. Yet, one thing that I have learned is that in some of the nations largest cities. The majority of people being diagnosed, are dianosed with full blown AIDS versus being diagnosed with HIV.

As I explained to Brandon that my telling of my story has a two fold reward for me.  It gives me the opportunity to talk to others one on one about what I went through and how it has affected me both positively and negatively. The second is that I am inspiring hope in others who might have given up on themselves and society in general.

One of the things about me is that I truly enjoy talking to people and it makes me feel like I am helping others and gives me a sense that I am giving something back to the community.

So if you are looking for a way to cope with your feelings of anxiety and depression or are looking for ways to deep or cope with stereotypes and stigma. Then maybe you should take up writing and talking to others about your story. I honestly think that you will find that your depression lessens and your self-worth will increase.

You are not doing this for yourself alone yet you will reap the most benefit from doing these things.

As always my hopes and prayers are with you. Love deeply, laugh often and live much.

Uncle B

Open your mouth let's talk about it! HIV is still alive and Well!

I am sickened once again and want to bring this subject back to your attention.  We are living in a day where HIV/AIDS isn't mainstream media coverage anymore, but it doesn't mean that it has gone away, isn't a threat, believe me it is still there and ready to jump on anyone it can come in contact with.  Remember, HIV doesn't care who you are, your ethnicity, your social status, or sexual preference, it will infect anyone that it comes in contact with.  I recently saw an article on the web about Atlanta, how more people there are being diagnosed with Full AIDS versus HIV.  That means there are too many people neglecting themselves.  It is everyone's job to Know Their Status.  It not only protects the one being tested but those they love and have sexual conduct with.

This morning a friend of mine sent me a report from POZ.Com which states that 91% of HIV passes from those that don't know their status or who are not in care.  This is a tremendous percentage and something that we need to talk about.  The United States has gone from a state of panic and awareness to a place of complacency and silence.  This is totally unacceptable!  Something must be done, and I am calling on you to help me reach out and spread the word.  I would like to see the end of HIV in my lifetime.  I have a group of friends and we go out and speak all the time trying to end fear, prejudice and misunderstandings about HIV/AIDS.  There are too many young people today that have no idea how they can contract the disease.  Today's youth those that are ages 17-30 don't seem to have a clue how or where they can contract this disease.  It is so bad in the area in which I live that a friend of mine was terrified the first time he came over to my house.  He didn't want to touch me, use any of my cups or utensils for fear of the disease, I didn't know it then.  But, by listening to me talk to others, he soon learned that HIV/AIDS wasn't something that could be picked up casually like an online date for the evening.  No, he found out that it was a blood borne disease and could only be transmitted if one had some type of mishap or had sexual relations without protection.

Once he explained to me how afraid he had been when he first met me, and how I had helped educated him on the disease all without my knowing that he was scared mind you.  This made me realize that I was doing something right.  I don't have a problem opening up to others and telling them my story.  I reveal to anyone who will listen my disease and what it can do and how it can be prevented.  The group I spoke about earlier is called the Positive Champions Speakers Bureau, whose aim it is to end stigma associated with HIV/AIDS, but we also seek to educated others about the disease, we try to show and demonstrate in our lives that this disease can happen to anyone. Our group is a cross-section of those we represent.  We are composed of both gay and straight men and women, minorities, and magnetic couples.  We don't discriminate at all we have come together with the realization that there is still too much ignorance in the world about this disease.  We all have different backgrounds, educations, religious preferences, nationalities  and races.  We are the changing Faces of AIDS.  No one on this planet is exempt from exposure and once you realize that the job of education and training becomes a much larger challenge.

Much to my dismay many of us who are infected find it hard to talk about our illness.  Why are we so shy when it comes to talking about HIV?  Many of the reasons could be: because of fear, fear of rejection, fear of being ridiculed, fear of being made and example of, fear of people making fun of us. Whatever it is that is keeping us from talking about it needs to be address and the only way to do that is by educating and personalizing the stigma associated with HIV/AIDs if we can rid ourselves of this fear we might more effectively reach a broader spectrum of people.  Fear and hysteria were hallmarks of the early years of this disease.  Widespread public panic forced pharmaceutical companies to invest billions of dollars into research, the government was pushed into action by appropriating money toward research, and the CDC was born.  Back then the new media broadcast stories about people suffering with AIDS, it became a household name.  But, fear ran wild in those days because there wasn't a clear understand of what the disease was or how it was transmitted.  It was commonly mislabeled as the Gay Disease, Gay Cancer, GRID and so forth.  However, this epidemic wasn't isolated to one specific group it soon moved to the rest of the population.  It went from an outbreak to and epidemic to a pandemic in less than 20 years.  There is still no cure for the disease but new testing has made early detection possible and new medications have come out that make it easier for an infected individual to live longer and stay healthier.   Times have changed and so have the attitudes of the people, but it is important to understand that just because these advancements come about doesn't mean that people aren't still dying from the disease.  Yes there is still money going into research, and everyday more and more information comes out about the virus.  But, it isn't news worthy, doesn't get the headlining like it used too.

Back in the 1990's a memorial quilt was made each panel was exactly 6' x 3' and was decorated by the people that loved and missed the person whose name was on the panel.  It used to be displayed all over the country at Gay Pride events.  Today, it has been retired and portions of it are displayed in Washington D.C. and other places.  Gay Pride events have become exaggerated craft fairs, concerts and commercialized, some education goes on but it is the secondary focus I am afraid.  Does the youth of today that visit these Pride events even know that there was a memorial AIDS Quilt?  Do they have any idea of what it was like to watch friends and family pass away with lesions and extreme complications to this horrible disease?  I don't think they do.  Those of us that are old enough to have lived through the 80's and 90's recall all of these things and so much more. We can tell you that the reason why the panels on the quilt were exactly 6' x 3' because it was the exact measurement of a coffin.  We were burying those we loved.  A whole was ripped into our society, loss and fear were rampant.  I would also hazard to guess that these younger generation kids don't even understand the significance of Gay Pride, and why we actually celebrate it yearly.  Who out there remembers the Stonewall Riots, the beginning of the Gay Pride movement, how we struggled for acceptance, equality and equal rights.  As I have said earlier times have changed, and we the custodians of knowledge have done a very poor job in educating those that come after us about the beginnings and reasons why we have some of the celebrations and memorial services that we do have.

If we can ever hope to get a handle on this disease and make sure that it finally ends within our lifetime is to take a bigger active role in this education process.  We have to shake these fears, and open our mouths, we must tell anyone who will listen about HIV/AIDS, dispel the lies, fears, and ignorance that surround this disease.  It can only get worse if we sweep it under the carpet and try to hide it. Does it really matter that people are living longer and are living healthier with the disease today?  Of course it does, but it doesn't end the hatred, fear, persecution and other stigmas associated with the disease.  Only by being transparent and letting the world know that we won't accept and tolerate these types of behavior anymore.  Plus, we need to emphasize the importance of getting tested regularly and KNOWING YOUR STATUS.

Please don't hide your head in the sand, it is everyone's responsibility.  How many of you know that 3 out of every 5 people you pass on the street are HIV positive and don't even know it.  Do you realize that in the United States that every 7 seconds another person is being diagnosed with HIV?  It is staggering to think about these things and yet so little is being done to educate our young people.  I live in Daytona Beach, Florida, and I live very close to Bethune-Cookman College which resides in the heaviest hit zipcode in Florida of HIV Infection.

Please take the time and talk to anyone around you who will listen to your story. You don't know who around you might need to be inspired by you and might gain hope just by hearing your testimony.  Encourage everyone you know to get tested regularly and to Know their Status, it might not only save their life, but those that they love and care about.

As always my hope and dreams are with you,

Uncle B

Saturday December 1st Dual Meaning for me!

You know when I was young December 1st only had one meaning for me, but as I got older and the AIDS pandemic was realized that day was forever changed for me.  Today I am one out of countless people that deal with living with HIV the precursor to AIDS.  Now, a lot has changes since the 80's with the hysteria and rumors running rampant through the country.  The life expectancy of a newly infected person is now close to 30 years with the current drugs that are on the market.  However, that doesn't mean that there still aren't deaths and complications that can arise that can shorten someone's lifespan.  As the title suggest I have now two reasons to celebrate on December 1st.  I guess the first and foremost one would be that it is my birthday, and second is the celebration of Worlds AIDS Day.

This year I am celebrating my 44th birthday, I am blessed and lucky to have such a long life.  Though I have health issues and concerns, I have still outlived some of my closest and dearest friends and loved ones.  See, in the early years of HIV/AIDS there wasn't much knowledge about the disease, how it was spread, and what could be done to treat it.  Many of my friends died a very painful and agonizing death, others became detached because of dementia and other factors.  It was hard for me watching so many of the people I love die, even worse was the fact that a longtime partner didn't even recognize me or know me the day that he died. We had been together for years, I was the lucky one, I didn't contract the disease right away.  As a matter of fact when he died in 95, I was finishing up my first battle with colon cancer and seemed to be none the worse for wear.

I have to be honest I was lost for quite awhile after his death, and so I decided to go back to school and that is when I first discovered my love for writing.  Here we are 20 years later and I am still writing and that is a blessing.  But nothing could take away the pain nor the hole that was left in my life by his passing. However, in 1997 I met an extraordinary person who moved me away from Orlando and my family and took me to the  "Big City" of Atlanta.  Where I actually lived and worked till this year.  I have met some wonderful and beautiful people on my journey, and I have made some big mistakes.  It is also where I contracted the virus that I had so carefully avoided.  I am the type of person that learns everything I can about the diseases and illness I am faced with.  Through that knowledge it led me to a greater understanding of the people that are affected by the disease as well as those infected by it.  See it is important to remember that a person doesn't actually have to be infected by the disease for it to affect them in some way.  None of us are immune to feeling the effects of a friend or loved one becoming infected.  Of course the circumstances and the situations are different still between the affected and the infected.

When I moved to Volusia County in February of 2012 I didn't know what I was going to find.  I came here blind only knowing my father.  Didn't even know the person he was living with. So I was on my own.  No friends, only my dad, no car, no money.  But I came anyway, and I have to tell you that I am happy that I did.  Through my curiosity and wanting to keep up with my medical treatments for HIV, I contacted the Florida AIDS helpline and got some information on resources in my area. Within a matter of days I had set up appointments and began my journey.  My first case manager, was Donna Wood, a wonderful woman who like me cares about people and their welfare.  She took me under her wing and talked to me about several programs that she thought I might be interested in, and by the summer I had joined and became part of several groups that advocate and fight the stigmas, myths and misconceptions about HIV/AIDS.  She also encouraged me to continue my writing and telling my story to anyone and everyone that would listen, for that I am going to be ever grateful.  So this year when the Positive Champions Speakers Bureau talked about doing an event for raising money for our group during the Worlds AIDS Week celebration I quickly volunteered to help.

The group decided that we were going to do a dinner and a play for our fundraiser.  We met with other organizations and coordinated our efforts so that we could do the play and not interfere with anyone else's events.  It was held at the Daytona Beach Museum of Arts and Sciences.  It was a catered affair, with a wine and cheese reception before, a slide presentation during the meal and then our performance.  The turn out was spectacular, and I have to say that we all had a great time.  It was a learning time and a time for coming together.  We took a topic that is highly sensitive, we broke it down into real life examples, told our story, and we did it in such a way that it wasn't heavy or stale, and gave it a human face, and a little humor and it was met with a great response. I am proud to say that I was the co-author the play, and I believe that throughout the work you can see the upbeat and positive energy that was lovingly put into it.  For those of you who didn't get to attend you missed something spectacular and revealing.

But you know, it was after the play was done and everyone was leaving that I had a chance to talk to some of the wait staff and people that were behind the scenes, and you know what was amazing to me was how open and receptive these young people were to the message we were sending out.  Two of the young men that were on the Banquet line and passing through the tables collecting the dirty dishes were 17 years old, they saw and heard the play, and one of them told me that he had learned a lot about the disease that he didn't know from our play, and that we had taken a taboo subject and made it humorous and delivered it with a delicacy that was excellent.  That the facts and figures that were expressed were done in a way that made them memorable and helped him to feel more comfortable about being tested and finding out more about the disease.  Now trust me when I tell you that I was touched by this. Because our goal is to address the younger generation, educate them, help them to understand the stigmas, fears that surround the disease and finding out that you are positive.

The young man went on to say that he was impressed with me because of my response to when I was asked questions about my health and how I managed to stay so upbeat and positive with all that I am facing.  Honestly, it was him and his willingness to talk to me that impressed me.  See, I am living with it, I have been dealing with it for awhile and I have come through the stigmas, social fears, the pressure of when to disclose and when not too, so talking to others about my illness has become second nature to me.  But here was a young man wanting to know more about what he could do to help bring awareness to his peers and friends and that my friends made the whole evening worthwhile.  Yes it is true that we want an end to the disease, the persecution, and the segregation that we feel when we disclose, but we also want to reach these young people. Help them to understand that safe sex, and getting tested routinely is important.  We want them to realize that HIV/AIDS doesn't care if you are gay or straight, male or female, white or black, hispanic or asian, it doesn't care if you are rich or poor, it doesn't care at all! We are all targets for it.  We also want them to realize that there are cultural differences that will be barriers that they may have to overcome and that there are others out there just like them that are going through the same things, and that there are people who care and are willing to help them.  No one has to face this alone.

Now as I close this entry, I want you to think about this, HIV/AIDS can impact your life at anytime, through yourself or those around you.  You can't tell if someone is sick or infected just by looking at them.  Heck three out of five people today are infected and have no signs of illness or even know that hey are infected.  You just can't tell.  We each have a voice and we can do something about this, we have been too quiet for far too long, people are still dying out there, and HIV/AIDS hasn't gone away.  Talk to your friends and family about it.  Volunteer your time if you have some, educate yourself and learn more about how it is affecting your community. Become a light in the darkness and let others know you care.  Though World's AIDS Day is only celebrated once a year, I hope that you will take the initiative in your own life and make it a celebration every day like I do.

I also want to say thank you for all of you who came to the benefit, saw our play and enjoyed yourself. I am glad you came, I am happy that we were able to deliver not hard topic to discuss, but also shared with you a part of ourselves and our stories.  You made all our efforts worthwhile.  Thank you to the Positive Champions Speaker's Bureau for becoming my family, my friends, and letting me be a part of your group.  Thank you for the support you have shown me this entire year as I have been battling my own health issues, and most of all thank you with trusting me with your stories, so that the play could be written and acted out. Thank you for listening to my advice and suggestions when we were rehearsing, and for making this event such a wonderful experience for everyone.

I would also like to say that I am so very proud of you all, for putting yourselves out there and giving of yourselves daily to each other and the community.  Your efforts inspire me and make me happy to have found such a group of loving and supportive people.  I am already looking forward to the coming year and all the things that we can do to help improve our community and our group.

I love you all!

As always my hopes and dreams are with you,

Uncle B