Tuesday, August 21, 2012

The Positive Champions Speakers Bureau

For those of you who have been following my blog for any length of time you know that I am very candid and open about my life and the illnesses that are affecting me.  Some of you maybe aware if you have been following my Facebook account that I dedicate an enormous amount of time to volunteer work.  Recently, as I was attending the Partnership for Comprehensive HIV/AIDS Planning, I learned about an organization that reached out and spoke to me.  During the meeting they had a Positive Champion perspective, which is a person infected with the disease that talks a little bit about their experience and the stigmas and fears that they faced when they found out.  Now, honestly this hit me so close to home and it made me ask for more information about the group and what their mission was.  Since that first meeting back in April, I have joined them in their cause.

The Positive Champions Speakers Bureau is comprised of HIV-Positive individuals who have come together in a setting that feels like home. We talk about our experiences, what our fears are and were, the stigmas we faced and continue to face, and how HIV has affected our friends and community.  We are a group that leans on and supports one another, and through our efforts we speak out to raise awareness of the disease, we seek to educate others about the issues of living with HIV/AIDS and we hope to end the myths and stigmas that surround it.  Just like so many other illness, when you are told that you have HIV/AIDS, you immediately think that you are going to die, that your life is over, and you wonder how you are going to tell your friends and family what has happened to you.  See in the community at large there seems to be this gulf that people assumes or hopes isolates them from it being their problem.  Since it isn't directly affecting them, they feel safe, and don't bother to learn or understand the enormity of the scope of the disease.  The Positive Champions Speakers Bureau hopes to put a face on the disease, to make individuals understand that it is a disease that doesn't care if you are gay, straight, a millionaire, a drug user, a housewife, a deacon in the church, a song writer, singer, or any other such thing. It can strike anyone anywhere.

Did you know that every 9 1/2 minutes someone in the U.S. is infected with HIV?  And it is everyday people, your doctor, your lawyer, the school teacher, the lunch room lady, your neighbor, your child, or you yourself.  It is a deadly disease, and their is a terrible shame that is associated with it and a guilt that is hard to fight.  There are many ways in which you can catch the disease, but the most common are unprotected sex, IV drug use, having multiple sex partners, etc.  There is a latency in which the virus can remain dormant for a number of years and creep up on you unaware.  Take responsibility for your sexual actions and understand that even that one time could be the time you get it...that one time you didn't use protection is all it takes.  Be sure to get tested regularly.  Know your status!  Trust me it is important, because there are people out there that felt fine, had no indication at all that they were Positive and when the test came back they were.  You don't have to be sick or have symptoms to be infected.  There is a myth that you have to be ill or in the hospital to be infected, but honestly it isn't true.  I had no symptoms, I felt fine, was going for my annual physical with my oncologist and the normal battery of test were run, I decided that it had been 3 months since my last HIV test and it came back negative, that I didn't have anything to worry about so I asked my doctor to run a new one for me with my other tests.  Two days later I was called into the office and told that I was Positive, and that they were going to run a phenotype and genotype to see what strand of the virus I had, but before I left his office he had made an appointment to see an infectious disease doctor the next morning. Now this was because of my medical history, I had been battling cancer and leukemia since 1992 and my immune system was already compromised, by the way this was in 2006. I was placed on a drug regimen even though they caught early on and I had less than 200,000 copies in my blood, and my t-cells were in 600's.

The reason why I am writing about this is because I want each of you to check out our website, it is located at  http://www.positivechampions.org  You will definitely find a lot of information on there, we dispel a lot of myths and stigmas and there are youtube videos that you can watch that will tell the story of some of our champion's.  I want you to encourage you to come back often because each of the members will eventually have their stories up there. You can see our upcoming speaking events, you can even request to have a speaker come to your place of employment or your church or any other type of function and we would gladly schedule the event and speak to your group.  If you would like to volunteer your time or know of someone that might be interested in joining us please feel free to get in contact with me or have them contact one of the members at the site.  Honestly we are inclusive group we do not discriminate in any way, even if you aren't positive, but know someone who is, or have a loved one that is infected we invite you to join our group, because you are affected by the disease as much as the infected person.  As I said the group is warm and inviting, it is friendly and open, we talk and listen to each other.  We support one another, and for some of us this is our family, because for whatever reason our real family has declined to accept us, they cannot wrap their heads around the disease or get past the stigmas and myths that surround it.

No one is going to judge you here, we all have our own story, and I am sure you are going to hear it at one point or another. Even if you aren't a speaker we still ask you to come and join us, we will help you work with you, there are people that come in and give us training on public speaking and how to write a speech.  This is an excellent opportunity to get involved and find a group that really does care about you.  We know what you are going through and we are here to help and love and support you.  We are each of us judged too often already by those around us, this is a place of warmth and safety where you can tell your story and share with others what you are going through.  As you get comfortable, you will see how easy it becomes to talk to others about yourself and your experiences, it becomes easier and easier, almost second nature.  Before you know it, you too are going to be a Positive Champion!

You can also see the Positive Champion Videos if you go to  http://www.youtube.com and type in Positive Champions.

Our regular website is http://www.positivechampions.org/

As always my hopes and dreams are with you,

Uncle B