- I want to learn to tango
- I must learn the words to every.single.song
- I'm in love with the cast at Florida Southern College. They're vocals were astounding!
Say WHAT?!What’s the most ridiculous thing you’ve heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?
Being HIV positive, I try not to be offended by myths, but it's hard. Growing up I've always heard I have "good hair", and now that I'm natural, people are baffled that I still have "good hair". Really? PLEASE. Hair is hair and usually if someone with HIV/AIDS is losing their hair it's because of the various treatments they have been on or other health ailments that their immune system is fighting in addition to the virus.
Thanks to media and Hollywood, the portrayal of HIV/AIDS infection is diluted to generic symptoms which isn't their fault because if you exhibit any immediate symptoms after infection, they are very similar to the flu or a bladder infection (which was my case). This baffles me because regardless of the HIV NOT being transmitted through coughing, sneezing, holding hands, using the bathroom after someone, using the same eating utensils, or swimming with - the concern for someone coughing severely should be addressed because of the flu which there is actually a vaccine for. When the Swine Flu came about everyone lost their minds wearing masks and drowning in hand sanitizer. With reason. But when public health officials tell you that all you have to do is abstain or wear a condom to prevent the transmission of HIV/AIDS people don't want to do it.
I'm thankful to those out there willing to admit that they didn't realize what they believed was false and I'm thankful to those out there that are educating themselves so that they can educate others. I'm grateful for my life in light of my infection 11 years ago because it has opened my eyes to the limits people put on themselves regarding their own health and the responsibility of maintaining it.
So, now I'm home. I'm back in my community, my routine, my environment. What can I filter from USCA that will live and grow where I am now? How can I keep that energy I felt alive?
Well, let me share a four-part series with you on what I experienced. That's the first step. If I keep it all to myself, I'm not doing anyone any good.
**UPDATE - Those who know me, know that I write a LOT. The three remaining posts of this series are way overdue and are still a work in progress as I learn more and more that is attached to this initial experience. Please bear with me. All three of you! LOL**
A little history to how I became able to be at this year's conference. I was a part of an NMAC (National Minority AIDS Council -the sponsoring agency for the conference), work group for PLWH (People Living with HIV) Leadership. There were other groups that were focused on content, social determinants and policy.We were flown to Washington for a meeting where we basically brainstormed on modernizing the Denver Principles of 1983 (used as framework - not to change it). The Denver Principles has been termed as the "Declaration of Independence" of AIDS and was presented during a gay and lesbian conference held in Denver by a handful of activists living with AIDS. Thirty years and many advances later, it was time to make some amendments that reflected these advances and changes. This was exciting for me and my glimpse into how much I didn't know of my HIV history. How could I begin to appreciate a life without HIV if I never understood what it was really like when it first came about? I knew what "text books" said, but I had never taken the time to really talk with the people that were still here and still thriving, to get a better understanding.
You're probably wondering why I didn't. Well, it had to do, like for many of us, with my personal encounters,when I was first diagnosed. I remember searching for a support group, someplace where I could be with people who understood my confusion, depression and feed into the ounce of hope I had for a life worth living. A health department employee took me to such meeting. At least that's what I thought. I walk in this room, it's full of Gay. White. Men. And they were angry. Very angry. Not at me, but with their situation living in Polk County as well as the the lack of medical care and support they were receiving. I was stunned. There was no hope in this room. There was no one who looked like me. There was no one willing or able to pull me aside and let me know I wasn't alone because they already felt alone in their own circumstances. I left and never returned. Not because they were White. Not because they were Gay and not because they were Men. I felt I didn't have a place among them. I was terrified because I didn't want to be in their situation. These men looked sick in their weariness. While I wasn't happy to be HIV positive, I didn't want to be in an emotional or physical state that welcomed AIDS either.
That experience haunted me, so much that I found comfort in being planted in the Black Woman from the South niche. While it is valid as it makes me relate-able to the faces that need someone to look to, I allowed it to hinder my growth as an advocate. Inwardly, I was becoming just like the men that were living in their moment in that support group. And I didn't even know it.
I didn't know until I sat in a room in D.C. with long-time survivors that it was time for a breakthrough. I viewed working on the blueprint of the Denver Principles as a historic moment. Just as historic as the Supreme Court overturning DOMA the same exact day. Of the two events, I want the world to remember that while we were defining our HIV/AIDS community and its needs, a momentous decision was made that only drove home the importance that after all is said and done...WE, the People...MATTER!
Having a voice at the table with history makers, people who had experiences that could add to mine, people who had to figure out what worked to survive because they had no choice. Today, in 2013, people newly diagnosed with HIV have a choice. It's not about the struggle to stay alive anymore because people are living longer and fuller lives everyday thanks to the treatments available. Now, it's about challenging individuals to shed the stigmas that we have against one another so it's the struggle to live...live a life without judgment or persecution because of an HIV status.
Here at this conference, among these survivors, I found myself sitting on a goldmine of life affirming experiences and my eyes were opened. I could see beyond my intimidation and embrace their perspective on these experiences.
On leaving that meeting and for the next few weeks I was torn in my emotions. I didn't understand why I was being allowed to be at the table. I was conflicted because I felt there were individuals there younger than me that were representing issues and a generation that I didn't recognize. It was when I arrived at the conference, the experience became more clear. The haunting of my experience in that support group had vanished. I stepped outside my comfort zone, my target population mentality and I focused on what was bringing us all to this conference. We had worked together, we shared and through that I finally felt like I had a place.
So I found myself presenting "The Blueprint: A Treatment Education Agenda for the 21st Century" with a panel of individuals that I admired, who ranged from long time survivors to newly diagnosed. "I" was the missing component, that intimidating factor; as a person who is neither newly diagnosed but not quite yet a long-term survivor. I knew how it felt to be newly diagnosed, but my missing part was what I needed to close the gap between the generations and culture divides. I found that the people whose mentoring I needed, those long-term survivors who were either too busy, too sick, too jaded had been there all along, but…one in particular had embraced me from the first moment I disclosed my status. I suddenly saw him in a whole different light. I wanted to hear his story, I wanted him to explain phrases and terms and things to me that I used to allow to go over my head because it didn't fit my experience.
I have to change that and it starts today, with this blog. If I truly want to be a part of this fight to end AIDS, I have to truly embrace how the fight began and all of its contributing factors, celebrate the lives that were involved along the way and unwrap myself from my safety net that separates me from others that are free diving into this thing and not looking back.
USCA Day 1, was my deciding moment, it's not too late to find yours.
Dedicated to Ron Hudson - my fabulous big brother, living positive for 30+ years and being a positive influence in my life since day one of my journey. I love you Ron.
I originally drafted this blog September of 2009.
Most of you who are familiar with my MySpace blogs know that September and I don't get along well. I never published it because as much as I sound determined in this draft... well...the end results are I never went back. I am in the dark, I have made excuses. I am human, don't judge me. I'm publishing this hoping that putting it out there in black and white for people to see may encourage me to make the time that I need for me.
I've been sent back in time six years. I've stood in front of people and shared how it felt that day. Sometimes I can remember exact details, sometimes I can feel the exact same way I did and other times I've blocked it out.
Yesterday, my doctor and I discussed my labs. In June, my T-cell count was 698. Dr. K expressed concern that I had contracted Hepatitis C. In August, tests were run and it was discovered that I don't have HepC; however my T-cells have dropped to 480.
My mind flashes back to a hospital visit where Dr. V stormed in my hospital room after I had been there for three days and wanted to quarantine me for tuberculosis. Once it was determined that I didn't have it, he insisted I be put on medication. I was to take Kaletra and Combivir twice a day. Three Kaletras and two Combivir's if I remember correctly... that's ten pills a day folks. Each time I swallowed a pill, I was reminded of what I almost did to my child, of what I did to my family, of that night, of what a low point I had reached in my life when I made the decision to sleep with him... I was reminded and drowned in sorrow each and every time.
And don't misunderstand, I've never liked swallowing pills. I don't like being reminded of illness or sickness or putting my health at the stake of a bunch of chemicals in a tablet form. Hell, who does? And the bigger they are, the more I abhor it, the more it makes my sorrow grow. It's just a constant reminder that something's not right, that I'm not complete and I need this pill to survive.
Anyway, he's ordered more blood work in 12 weeks.
Now please understand this, I have a significant way of praying over situations and once I'm passed my anger/pity party/f*** the world phase I will resume to that state.
Right now. I'm mad. I'm sad. And dammit, I'm letting my wall down. When you have people around you all the time telling you how strong you are, how you inspire them and how people need to hear your story over and over again, you begin to create this bubble around yourself. Not an untouchable bubble but one where you get so caught up in helping everyone else, you forget to know how to deal with issues of your own. The people one would think that I'd reach out to, I don't want to. I don't want to be asked a lot of questions, I simply want to cry and borrow a shoulder for a minute. That's all. I want someone to hug ME and tell ME that everything is going to be alright. I want it to be ok to be this "powerful", "inspirational", "empowering" person that everyone sees to be allowed to be afraid, uncomfortable and weak right now. Just temporarily. Give me that.
I know I'm going to be ok, God's got too much work for me to do to NOT be ok. But I'm simply not feeling it right now and I want to be allowed that. So I'm in my funk, I'm in my quiet mode and I'm ok with it.