Posts Tagged ‘social media and hiv’

 

I am honestly excited about this project and want to see it succeed. Currently, there are no programs that discuss life living with HIV from a protagonist and their point of view.  This is something that we so desperately need to educate more individuals, break down stigma, but most importantly have something that us individuals living with HIV can related to.   Please check out http://www.unsurepositiveseries.com for more information on the project and the kickstarter campaign!

 


fc85e3031fe45518fddd2a7b49360d42_large https://www.youtube.com/watch?v=5jv4IoRSGvw Real HIV? Nowhere on T.V.! This series will explore many of the issues that affect HIV-positive people as they live on, and stay positive. Unsure/Positive is a Dramedy. What exactly is a Dramedy, you ask? Also known as tragicomedy, comedic drama, seriocomedy, or Unsure/Positive (the Series). Humor and Drama combined! A hybrid! The primary goal of the series is to entertain. Fair warning: we may entertain you *while* raising awareness about life with HIV. In an age of mobile devices, hookup culture, antiretroviral treatments, and the ongoing stigma that resonates with our own societal fears, Unsure/Positive offers a healthy dose of reality, honesty, and humor. You haven’t seen anything like this (because we’re still busy making it happen!) We have a fantastic cast, a baller crew, and we’re itching to get started– so much so that we already shot the first ten pages of our script on July 12th and 13th, 2014— well before securing our Kickstarter funding. The plan? To show you what you’re backing. Our sneak preview can be viewed right here: HIV is no longer a death sentence. That’s (somewhat) common knowledge… so much so that the other complications of living with the disease often get overlooked. The social stigma of an HIV-positive diagnosis is, on its own, a serious ongoing issue for “poz” persons. Unsure/Positive will explore this, and also the variety of situations– stark and mundane– that come up when human beings try to grapple with this complicated disease. With Your Help They Can:

  • Pay our professional director of photography, Ben Proulx (this is the guy in charge of the camera!)
  • Feed our cast and crew for (at least) 8 days (nom-nom!)
  • Pay our awesome, hardworking crewpeoples
  • Cover the cost of liability insurance
  • Secure a U-Haul for equipment pick-up and return
  • Buy cases of water for our set (You don’t know muggy till you’ve been in Boston in August!)
  • Buy a hard-drive on which to save all our footage
  • Buy a second hard-drive. (Just in case!)
  • Work with a professional sound mixer during post production
  • Work with a professional colorist during post production
  • And more!

Thanks in advance for supporting our project. We look forward to bringing you this brand new series very soon!


Unsure/Positive faces the challenge of combating the stigma associated with HIV/AIDS– many people are reluctant to fund the project only because of the negativity associated with these acronyms. One possible risk is that this stigma will undermine our efforts to reach a wide audience. We feel this is an ongoing challenge– but you can bet we’re here to fight the good fight. While stylistically our project is a “single camera” show, much of Unsure/Positive will be shot with two cameras. This means extra crew and personnel to manage the production. Translation: it’s not cheap! (But the good stuff rarely is.) We are very much a grassroots production and support from you, our community, will help make this project a success. Please let us know if you have any questions or concerns, and thank you for your continued support!

ImageSo I know many of you have wondered where I’ve been.  Well, after a year phenomenal year of amazing events and opportunities that has opened up for PozLifeofPatrick and me.  These opportunities would not have happened without others seeing my potential and giving me a chance.

On December 18, 2012 I created the blog to chronicle my life living with HIV and to provide opportunities for others to lend their voices.  Being open with my status allows me to help educate others, break down stigma, and break the silence that so many of my positive brothers and sisters live in. Many living with HIV lay in silence because of the fear of stigma and discrimination based off of their status.  I have worked very hard and seen success in my mission to decrease stigma and increase understanding around this virus that affects so many.  On the other end of the very sharp double-edged sword I continue to see a lack of understanding and openness to HIV, even more prevalent in my dating life.   Call me strange or too young for love, but throughout this year I helplessly made myself vulnerable in an effort to try to find a significant person to be in my life.  As I approach a 2014 I can report and say that at this moment in time I am very much single; however, my priorities have changed.

Image  By being able to start my new career in the non-profit sector is where everything started.  I was able to interact with many individuals through community HIV outreach, education, and testing.  Also, working with NMAC with their Youth Initiative to End HIV/AIDS in America, and its HIV-positive Leadership Working Group of their National HIV Health Literacy and Wellness Initiative.  This year I was also given the opportunity featured alongside another fabulous HIV advocate, Guy Anthony on Blackmenrise.org where we talk about in more detail about our lives.  Through NMAC’s Youth Initiative I was able to travel to New Orleans, Louisiana for USCA 2013.   There I learned more about HIV and those who are affected by it, networked with so many different individuals and organizations, moderated a discussion on storytelling and HIV, made new allies/friends, and overall took away an amazing invaluable and indescribable experience.

Image            Throughout this year I was also able to be brought on as the Testing Coordinator to The Fredericksburg Area HIV/AIDS Support Services (FAHASS) where with the help of a dedicated prevention team helped to test, diagnose, and link more individuals to care then we ever have.  With being given a special grant called CAPUS, we will be able to reach more affected populations to educate, test, and link any individual who is HIV-positive into care.

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Also, I was featured alongside other youth in an MTV Staying Alive Documentary, “My Sex Life and Everyone Else’s.”  This

documentary may not have been rainbows and butterflies for me, but it gives me a stage to continue the dialogue of what it is like to live with HIV and deal with the struggle to get out of the stages of grief and guilt.  Looking back now I can honestly say that I am light years away from that time period in my life.

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           Other highlights of my year was running The Marine Corps Marathon and Anthem Richmond Marathon back-to-back, and helping to raise almost $20,000 for The Grassroots Project’s Team Grassroots.  Also, working with ACCESS AIDS in the Hampton Roads region to help further the discussion that needed to take place to people of color.

            There are many things that I can rant on about but I already feel like folks may think that I am being narcissistic; however, this is more about showing people that if I can do this in one year then why can’t you, a community, or a nation.  I have said it before but I am serious about making pozlifeofpatrick more about others in 2014.  I started the process of having my live show, PozLifeLive, where I bring on others to share their stories, experiences, and work for the world.  Also, by opening up my blog up for others to share it gives the opportunity to have an even greater experience when you visit my website or channel. Image

So I landed in New Orleans around 11:30 am local time and was full of nervousness, anticipation, and a desire to complete my mission. My mission, which I chose to accept would be to represent people of my organization , NMAC’s Youth Initiative, and most importantly people living with HIV. My goals were to network, gain knowledge, and make connections that could help my community of Fredericksburg, VA and overall the increased number of people who are HIV Positive. You will notice for a first time I did not take any pictures of me on this trip. This is because attending this conference was not about me but more about the work that needed to be done. I was focused and ready to accomplish my mission. On the flight in I had already noticed so many of my friends and colleagues from the DMV area (DC, Maryland, Virginia) and was excited and relieved that I would know some people there.

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Arriving to the Hyatt Regency Conference Hotel I was amazed and thought to myself “wow USCA knows how to impress!” Arriving at the hotel I had made my way to the elevator and after ten minutes of trying to figure out how to operate it made my way up to my hotel room. While heading up to the room I turned around to the amazing view of The Superdome. It was gargantuan and a reality check that I had arrived. The room I was to reside in for four days was amazing. After spending the afternoon showering, grabbing lunch, and resting it was now time to head downstairs for the youth reception. It was there that I met amazing young people who had the same interest in ending this epidemic as I do. Words cannot describe the feelings of joy that I had being in a room with people who were also down for the cause. After that reception things just took off. From a dinner presentation about resilience from awesome plenary discussions about ending AIDS in the south, Perspectives on the Affordable Care Act (ACA), The Engagement Challenge, Personal stories surrounding HIV, and Implementation of the Affordable Care Act. Plenary sessions were

75925_10100476512901135_193260318_n1237426_509191059164700_2050760092_ogreat and I truly benefited from hearing personal stories. Mondo Guerra from Project Runway was present and took the time to speak and take pictures with us (thanks to Advocates For Youth for working to set that up). He thanked us for doing what we did and told us to stay vigilant in getting the word out and having those important conversations about HIV. What really shocked me was his persistence to stay and talk with us despite behind the scenes people trying to move him along. That spoke volumes on how big this opportunity was for me and the other scholars. I know Duane Cramer from our initial meeting at this year’s DC Black Pride; however, he continues to amaze through his friendliness and hard work.

The workshop sessions for me were the essential meat and potatoes of this conference. On the first official day of the conference I attended a session on Comprehensive Sexual Health Education as HIV Prevention, which was very interesting to be in. I had no idea that many states still only taught abstinence. I know that in my own high school career comprehensive sexual education was briefly mentioned while abstinence was more emphasized, but wow six years later and still no major moves. That was very disappointing to hear; however, we were told to reach out to our state representative and even the school board (which has huge power) to push for more comprehensive sexual education in our school systems. On day one we had a welcome to the whole Youth Initiative which went over roles, responsibilities, and expectations. This also allowed us additional time to get to know more about us and also what we were expecting from the conference. That session wrapped up day one and I spent the rest of the evening catching up on my homework which I was so behind on. IMG_1484

The start of day two went awesome. I awoke got ready for the day and made my way down to a very informal roundtable discussion for people living with HIV. The topic that was presented by the moderator Alex Garner of NMAC was “How do we bridge the intergenerational gap?” I was one of the very few young people in the room and I have to admit that I was so nervous and overwhelmed. In the room was Peter Staley, one of the original founding members of ACT UP New York, Oriol Gutierre of Poz.com and Poz Magazine, and Mark S. King successful creator of Myfabulousdisease.com and the web-series “The Real Poz Guys of Atlanta,” just to name a few. I was so humbled to be able to be in the presence of such great people. Most importantly I was able to listen to their stories, their wants, and most importantly their needs. What I got from this standing room only session was that many of the more experienced advocates were tired and were ready to pass on the torch to the next generation. Bear in mind many have been fighting the long hard battle for more than 30 years!! I also was given the floor to share my experiences and my thoughts, which I would have never imagined almost two years ago when I first learned my status. Peter Staley said something that really has and will continue to sit with me. He stated that it was depressing to see the HIV stigma among gay men. Every gay man who lives with HIV has experienced this before. It is heartbreaking to be treated differently from people in general let alone your own community. From the room I took away many connections and also support from strangers who turned quickly into my new extended family.

1017031_10200804696179231_2032299150_n The next session was one I was involved in. I was moderating a panel and audience discussion on Storytelling Using the Media & Cultural Arts. I was very honored that I was given the ability to moderate and lead this discussion as well as work alongside other intelligent and committed youth initiative scholars. The presentation went really well and we discussed how social media like Facebook ,Twitter, Blogging, and Vlogging can be effective tools in storytelling. Cultural arts are also very important. Taija, an Alaskan Native who was a panelist of this session shared with us how storytelling in her community is important. She shared a video with us, which served as a great example.

I also want to give a huge thanks to my other panelist Derek Hernandez and Felton Beeks who provided great feedback and knowledge surrounding social media tools that can be utilized. That evening we had the pleasure to meet Dr. Jack Whitescarver, Ph.D., NIH Associate Director for AIDS Research and Director, Office of AIDS Research. We all sat around informally as he told us the story on how he first was introduced to HIV/AIDS. It was very beneficial and I am greatly appreciative of the time Dr. Whitescarver took out to meet and talk with us.

On the morning of day three I attended a session on Engaging People Living with HIV in a Changing Environment. I am not going to lie I was a little late to the session due to engaging and networking with someone who is a fan of the pozlife stopping me (networking happens often in spaces like this). I slide into the session to notice my colleague Venton Jones of The National Black Gay Mens Advocacy Coalition on the panel of the discussion. My work doing the pozlifeofpatrick was highlighted by Venton and he asked me to tell everyone in the room about my story. So I quickly gave a synopsis of how I found out my status and why I created the blog (for you!) and before I knew it I was being followed by AIDS.GOV, the amazing Josh Robbins of Imstilljosh.com! A huge thank you to Venton Jones for giving me that opportunity to discuss the pozlifeofpatrick and the effectiveness it has been in engaging both HIV Positive and Negative individuals. In the afternoon I attended two sessions on Strategizing and Mobilizing to End the Epidemic and another session on PrEP Messaging. Both sessions had participation by youth initiative scholars and I was gaining so much knowledge from the points that were discussed. I particularly loved the discussion about PrEP. Start talking about innovations and expanding the prevention toolbox and I am there! It was a great discussion which really focused on the importance of PrEP and the role it will play going into the future in regards to decreasing new infections of HIV.

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On day four all the youth initiative scholars met and we closed out the session. I attended the lunch plenary session but left early to prepare to depart for the airport. For me it was a bittersweet moment. I have never really been to a summer camp I actually enjoyed; however, for four days I felt as if I was on top of the world. Where else but at my first USCA conference was I able to network with so many movers and shakers in the field of HIV, but most importantly be surrounded by like-mined young people who will be alongside me to take the torch and continue the fight. On my flight back I tried to think about what I really enjoyed about The U.S. Conference On AIDS overall and I would have to say outside of the sessions it had to be the people. For me it was fantastic interacting with such great people. From Paul Kawata, Executive Director of NMAC spending as much time as he could around the youth initiative scholars to the NMAC staff providing guidance and a very unofficial form of mentorship throughout this entire process. To Viiv Healthcare for having fantastic people speaking and engaging with us. Also, the Magic Johnson Foundation for being apart of the process and speaking on the last day about the importance of what we are doing as future leaders in our communities. Over a huge thank you to The National Minority AIDS Council for creating this initiative for me to be apart of. USCA 2013 had other major sponsors that helped to create an event of a lifetime for me. 1270341_509194375831035_858202610_o

I am already in the planning stages to attend USCA 2014 in San Diego, California and am excited to be apart of that conference. I know that more work has to be done to improve the treatment cascade so that more individuals living with HIV have undetectable viral loads. That takes place by having more prevention with people living with HIV. It is important to engage the community and getting them involved in the fight against HIV. Also, that ACA is right around the corner and will transport healthcare to a new destination we have never seen before. Leaving USCA 2013 I know that many understand the importance of PrEP to help reduce HIV transmissions. At the next conference I will be sure to bring empty luggage so I can take as many things as possible from the exhibition area. I appreciated the condoms, lube, pamphlets, posters, and other things that can be distributed in my community that needs these resources. I will always keep the youth initiative scholars of 2013 very close to me. In four days I developed friendships and camaraderie with these special young people I know I will be working with closely in the future.

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So for the past couple of weeks I have come down sick.  At first my nose was running, which made me think it was just allergies or something.  Well two weeks later I am sitting here not able to breathe and dealing with a lung infection.  For me it is so strange and I can only attribute it to my HIV.  Before I would feel like I was coming on with a cold and  take some vitamins and a DayQuil and wake up the next day at 100 percent.  I tried the same remedy this time around and I woke up the next day feeling worse.

You see I don’t have the same immune system like I had before.  It has been severely compromised.  My T-Cell count was 116 when I was diagnosed.  Thank God I am at 240 and with an undetectable viral load to this day; however, a normal CD4 count in other negative individuals can be up in the thousands (usually between 800-1400 but average around 800-900).  So I went to my doctors office at Whitman Walker , which is apart of my four week check-in for the clinical trial  I am on (cobicistat), to give some blood for some tests to be run (which check my CD4 count, Viral Load, sugar levels, kidney function, and cholesterol).  They take about five vials of blood and it is quick and easy (I as well as many other HIV Positive people quickly get used to this part).  They take your vitals and ask you questions like when did you last take your medication and how you are feeling.  At this point I tell her how I was not feeling well and she told me to mention that to the physician that was scheduled to see me.  So to fast forward I saw the doctor and had my physical.  Also, I was told that my lungs were indeed infected.  So I was prescribed some medication and sent along my way.  Now for the next few days I am stuck taking multiple pills (2 Prezistas, 1Truvada, 1 Cobicistat, 1/2 Zpac/Antibiotic, 1 Pill to help with coughing, 1 vitamin) which really is not a big deal (one would think it would depress however not so much on my end).  Image

I guess I always fear that I will relapse and end up sick like I was when I was first diagnosed. The fear that my medical regiment to keep HiV at bay will not work is something that is always visibly clear in the back of my head.  I know that in life everyone goes through something rather it is financial, emotional, physically, etc. The bigger picture is that we all have our flaws but how we work to overcome these short comings or life changes is what really matters.

Even as a child I equated life to something similar as  “The Circle of Life.”  We are always out of something, about to go through something, in something, or just getting out of something.  This is a continuous cycle that never ends.  A phase may stall or take longer but it will continue at some point.  WIth all the good and the bad that has come with being positive I have become fixated more on instant gratification.  I want to do so much before the end of my time; however, I truly struggle slowing it down.

Regardless if we are rich, poor, healthy, sick, black, white, gay, straight, or whatever comparison you want to give we will all meet our maker at the end of the day (some later than others).  So all good things must come to an end.

-Patrick

So I am finally getting a hang of this blogging thing.  I find it so cool that people are reading.  It seriously means so much to me. A few days ago I was having a conversation with a father like figure of mines (I call him my gay father) and he asked me where my facebook went.  He was under

the impression that I went on a blocking spree and he was a victim of it.  It was actually much deeper and pressing issue than just me wanting to remove people from my life.  When I found out I was HIV Positive I did something that I still regret to this day.  I told a person who I will call “Ron,” about my new diagnosis.  Well this spread like wildfire across the social media spectrum and the rumors began to start shortly after.  I began to receive so many messages asking if there was anything that I wants to say or if I was going to die from AIDS.  I was so shocked to hear such accusations that I began to panic and stress myself out; however,  I tried to not let it get to me.

The situation that really threw me over the edge took place on Facebook one evening on February 4, 2011.  I got home and loaded up my Facebook and found something that looked strange coming from someone who I considered my friend’s profile.  I notice one picture that turned out to be a needle in his arm

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and what looked like blood going into a tube.  Another picture showed results of a HIV test that showed negative.  Now the next statement is what still keeps me fearful from social media to this day.  Shockingly I read his status that said something to the effect of there being diseased people with AIDS around him who will do nothing but infect everyone around him.  The status continued to say that people who were dying and spreading their AIDS was not welcome with his friends.  At that point I was literally sitting there with my mouth wide open, so surprised that my secret was finally out, maybe not with my name attached but still exposed enough to want to hide away under a rock.

At that point I blocked the guy who said those harmful things and anyone closely associated with him.  I felt so naked and lost but ended up deactivating my Facebook page.  Minutes later I noticed that people on my twitter were talking about my posted pictures and saying that I looked like an alien.  Those twitter comments may not have been related to HIV however it hurt me so much that people were saying such mean things to me, a person who minded his own business and really stayed to himself.  At that point I told myself I was over it and decided to completely pull away from social media.

My excuse?  Well it was simply that I was becoming too obsessed with social media and it was absorbing my life.  Yes, that was true but if I was not called out I would still be an active user giving my friends and follower about my day-to-day and minute-by-minute commentary.  Things definitely have changed for the better.  The time off really gave me time to really grow as an individual.  I have become stronger.  I have reached a point in my life where I am more confident with myself and honestly I just don’t care about the negative things people have to say about me.  When I was a kid my parents always used to tell me that for every action there is an equal but opposite reaction.  So as an adult and as a mature individual I take full responsibility for my actions  and the results of them.  I am proud to say that I am a gay black male who is HIV positive.  Like I always say being HIV positive is a double-edged sword.  The great thing about my condition is that I finally have more appreciation for life, my health, and my friends/family who love me to death.

So due to this overwhelming growth and confidence, this HIV positive guy has finally made the decision to return to social media.  I will return and talk about my experiences and no longer be afraid of what people think and say.  Through my life I have come to realize that words can equate the same feeling of being stabbed in the heart or just feeling plain worthless.  Negative words and put downs seriously suck; however, I have come to realize the importance of being stronger than such verbage.  If I can say anything to my readers it would be to stay strong and to never let hurtful words put you down.  We all go through ups in downs in life however life is seriously an epic journey with the goal of making it to the end alive and with great experiences to pass on to others.

In 2013 I strive to be more goal oriented and to let people know that I am just a regular guy living a quite so positive life.  Social media.. look out here I come…