I spent 2 hour sitting in my car crying last night. I waited until my mother was asleep before I did so. She was in a lot of pain yesterday. Every time she gets sick it worries me. I always think back to the day I found out I was positive. she sat on the floor with me as I cried and told me that I never had to worry about anything as long as she was ok because she and I had the same thing and she tole me that hers was a little bit worse then mines so if anything bad was going to happen to me it would happen to her first. I’m sure that every thing that happens to her wont happen to me and every thing that happens to me wont happen to her but seeing her sick always brings up that conversation.
I’m thankful for the doctors and God because we have both been relatively healthy. Her words and courage have bought me through many hard times and I try my hardest to always be there for her so together I feel like we have beat the odds.
Its been on my mind to share my current story with the world in hopes to encourage others who may be going thru the same things that I am going thru. I have spent years sharing the story of my past with anyone willing to listen, but its time for me to talk about the now. I am positively changing my life. I sometimes fear that the changes I am making are not the best. They say honesty is the best policy but how honest should one be? Prior to my 27th b-day the majority of the people I considered to be my friends didn’t even know my real name. I painted a perfect mask and I wore it every day. I didn’t keep my medical appointments. I didn’t accept any public speaking requests, and I was only minimally involved in anything that had to do with HIV. I was hiding because I read a few negative responses posted on a youtube video about me. I let the words of the ignorant force me into a closet. That same video was found by someone who was “friends” with “Angel” and just as soon as it was viewed by that one person, it was posted on “Angels” facebook wall and from there it was inboxed to several people. “Angels” phone started to ring off the hook. Friends became enemies and it t was that moment Angel died and Lynnea was pushed out of her closet.
I was reminded of just how uneducated people are about HIV. I was surprised by how many people ran from me, threatened me, hated me, all because of a microscopic part of my blood. I felt like my secret was going to get me hurt. I left LA paranoid and afraid of the fact that I had hurt so many people. During the time I wore my mask I lived life based on what felt right at the moment. HIV was always in the back of my mind so I was sure to insist and encourage the use of protection with my sex partner but not many people trust a condom when they know the person they are with has an infection that is incurable.
my secret coming out started a testing frenzy amongst the 300+ people who were on my facebook page. I responded to all the negative calls, text messages, and e-mails with the phone numbers and addresses to local free testing centers. I was told that the next day several people showed up at the locations that I suggested. I deactivated my facebook page and ignored my cellphone for the next few weeks. Angel had a very fun and exciting life. She went out almost every night. Karaoke on Mondays Wednesdays and Fridays, Taco Tuesdays, club hopping on Saturdays and Beach bonfires at any time on any day that she felt bored. Angel is gone and so is that life. I’m not sure what to expect from this new life but I’m sure it will be Positively Beautiful!
I never got a ring.I was never even dignified with the question of will you marry me and yet I have been joined eternally to my enemy.
If some guy so much as catches my eye then this unwanted husband of mines comes running out baring unloaded guns screaming LEAVE MY WOMEN ALONE! SHE IS TAKEN. Its unloaded I explain as I watch my potential lover walk away. My chest is filled with pain as my heart continues breaking
My heart has been highjacked. My love tainted. My affection stained by the most beautiful beet red dye and no matter how hard I scrub it wont come clean.
How is this legal when I was never asked “Do you?” I never stated my vows never wore a veil yet my romantic get aways and lavish dinners have been replaced with hospital visits, vials of tainted blood, a life time supply of pills, and a mile high stack of paper work to avoid ridiculous medical bills.
Complera, its been 1 month, 1 week and 1 day. Calculate it differently and it comes out to 38 days. I have taken this 1 pill every day and I have cried about it each of those days. After the first 14 days of sobbing loudly I have learned to allow the tears to fall in silence. 6 days after learning to cut the sound I discovered a way to cut the tears in half. Yesterday I allowed myself to drop only 5 tears. That was all I had time for. I haven’t taken it yet today but I’m hoping to get thru it with no tears today. I have spent my life being a medication rebel. I would lie to my doctor and say I’m taking it. as a child at summer camp I use to push the pills out of my mouth and into the paper water cup with out the nurse seeing the exchange. I would crumble the cup in a way that the pills will be balled up inside, throw the cup away and then run out of the “med-shed.” at home I would flush them down the toilet. In a way I feel I did the right thing by avoiding the pills as a child. HIV was very new and children were given the same drugs in the same doses as adults. I remember going to funerals and walking forward to view the body and feeling like I would soon be the lifeless corpse laying in the casket on display for my loved ones.
I learned how to lie to everyone so I could live a “normal life.” some thought I took the pills and other didn’t even know I needed medication. It wasn’t until July of 2009 that I was hit with a scary odd viral infection that caused the left side of my face to be paralyzed. I woke July 5th and I couldn’t feel the left side of my face at all. I couldn’t fully close my left eye, When I spoke only the right side of my mouth would move and I was afraid I had suffered a stroke while I slept. I was in the hospital for 3 nights. I found out that my blood pressure was high due to stress, and I didn’t have a stroke at all. It was a viral infection called Bells Palsy which attacks one or both of the major facial nerves. My t-cells were at 250, almost low enough for me to have and AIDS diagnosis. The doctors informed me that at the age of 24 I had now officially, on the records had my first opportunistic infection and if I didn’t start taking meds to boost my immune system I would be given an AIDS diagnosis. I don’t have a fear of AIDS its pretty much the same as HIV it just means you have had less the 200 t-cells and opportunistic infections. I am what they consider an “HIV controller” or a “long-term nonprogressor (LTNP)”
Long story short the sudden attack on my face was the thing that made me realize it was time to start talking about meds. I hate hospitals and I hate being alone. The night I spent in that hospital by myself made me want to do what ever it would take to make sure I didn’t have to be there again any time soon. I didn’t know that from that point on it take me three years to learn how to be adherent to my treatment. I still tried to live my “normal life” I had to stop trying to be “normal” so I could start being “real” and I must say me being “real” is so much easier then being “normal”
Time to take my pills. Complera for HIV, something else for high blood pressure, and 2 other pills to control the side effects of the HIV meds…. every day….. for the rest of my life….. wheres the kleenex?
A fashion show that aims to build the self esteem of people diagnosed with HIV/AIDS and prove to the audience that HIV can happen to anyone.
The show will consist of positive and negative models. The HIV status of the models will not be disclosed to the audience. The message will be all of the models know their HIV status, do you? The mirror will never tell if you’re positive or not because we are all “Positively Beautiful!”
The first positively beautiful was held during the Positive Youth Institute of the Ryan White Youth Conference on AIDS 2006. Everyone in the audience was positive and yet it was difficult to get participants to model due to the fact that people didn’t want to be involved with anything HIV related that put them in a spotlight.
The models will learn how to overcome fear of stigma and rejection around testing and disclosure. They will become comfortable with the idea of talking about HIV, and encouraging others to get tested. They will also gain a boost of confidence by learning that they are Beautiful even after being diagnosed with something that society has deemed ugly, un-attractive, and un-sexy.
The audience will see confident people who have gotten over the initial fear of getting a test. They will gain the knowledge that HIV positive people don’t have “a look.” They will be encouraged to get tested and they will be provided with information about how and where to go get tested. If there happens to be any HIV positive people in the audience they will be given a chance to see the concept of HIV pared with beauty.
The fashion show will expand beyond the runway by providing information to include: free testing site, self esteem building exercises for positive people, peer support, and counseling for newly diagnosed people.
* “job interview appropriate” outfit to send models home with to thank them for their participation.
-Printed programs and informative handouts for audience
It is a great feeling to see the progress that is being made with The Positively Beautiful Fashion show Los Angeles. I am humbled to see the beautiful people who are giving their time and love to helping this show be as great as I see it in my head. I am sure many hearts will be touched. This is what I feel God has called me to do. I have a voice, a virus, and a vision. I have to put the three thing together and make my mark on this world.
It took a lot for me to look in a mirror and like the image that was reflected. My skin was covered with the negative words that society has fed to me. There were plenty of times that I sat up late at night crying because I lacked the courage it took to make the most cowardly move I could think of. life may hurt but the fear of the pain of ending it hurts even more. I still have nights that I cry as I fight thought of suicide. Its at those moment that I hear my mother telling me to be strong. I dry the tears from my eyes, look up to the heavens and see the faces of all the Angels who watch on as I go thru these moments. I hear them tell me that they need me to live the life they no longer have. I must carry on their memory. I must share their stories. I must pass on the love that they unselfishly gave to me. I must speak the words that they can no longer speak. It is up to me to carry the torch and show the world that HIV/AIDS can happen to any one who is not careful.
Mary, Chavella, Ariel, Jonathan, Baby Raymond, Grant, Baby Michael, Andrea, Raytasha, Ryan, Alphonso, Ms. Shirley, Sandra, and so many others whos faces I still see in my dreams but names I can not recall. they have each became a feather in my wings to help lift me up when I’m to weak to lift myself