Tag Archive | AIDS

…. Nothing.

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I feel like I almost have to trick people into being “o.k.” with me. I have started to work a normal 9-5 job and I’m deeply afraid of my HIV status being found out. I don’t know why I feel like I have to be secretive and private about something that is such a minor part of my life. HIV has been a major part of society for so long that I feel like I shouldn’t have to fear rejection any more. Its funny I started talking to a person that I am attracted to and have been for a while. I’ve known this person for a few years now and when I first met them the vibes were strong and I felt like they wanted to explore the possibilities of a relationship with me. This person even made comments about how much they like me. I was called attractive and sexy and the smile that was on my face was as bright and fake as a neon green sky because I felt like as soon as they found out about my illness they wouldn’t feel the same. That person ended up in a relationship that recently ended and I felt like the stars might still be there so with me being the new open and honest person that I am I spilled my guts one night after hanging out with that person. We have been talking daily since then but I am hurt about the fact that the vibes I got in the beginning are gone. No more stars. Just a friend.

I honestly do appreciate all my friends but they don’t fill the empty spaces in my heart. I am truly missing the kind of love that can only be filled by that special person. the one who will have your back no matter what, the one who will laugh and cry with you, talk and listen to you, love and hold you. My last relationship made me fill that space with concrete. but just like the sidewalks that concrete wears down and cracks over time. The emptiness hurts and after a while it will drive you crazy.

What is it about this virus that yells “BE MY FRIEND AND NOTHING MORE!” Positively Beautiful is my motto but sometimes I wish I could drop the “Positively ” and just be beautiful. As I type this out I realize tonight is going to be one of those long lonely nights. Despite the fact that I’m in a house full of people I feel like I’m at the bottom of a ditch screaming and crying but no one can hear me. The quick hugs and pats on the back are cute but not enough sometimes. I feel stupid for feeling like this but I think everybody need somebody.I know a few people who have had children to get the unconditional love that they desire. But for me to have a child would be the most selfish thing I could do. I know the risk of me infecting the man or baby are low as long as I adhere to my medication and keep my viral load at an undetectable level but I still know that I’m sick and may not be around long enough to raise my own child.

I try to drown myself in work and activities to ignore the fact that I’m alone but when the sun goes down and the world is asleep I’m left alone with my thoughts and my nightmares. Dreams that I’m running away from and angry mob of people who wish me harm. I run out of places to hide and I’m tired of running. Ive spent my life hiding and running but what do I do now. I face the mob. Alone. Tired the sad part is that when I stop running they just run past me and I realize that it wasn’t me that they were after in the first  place. I am nothing.

Another page of my book

…. he came and got me from my bed every night. I would cry when my mom left for work begging her to take me with her. I clung to her on weekends. It got to a point that she couldn’t leave me at home without me and if she did I would cry until she came back or I fell asleep. She would have to sneak out the house and not let me see her go. I never told her why I was afraid to stay at home without her.

As my mom’s relationship with Willy went on she became pregnant by him. The baby was conceived around the time that a strange illness was affecting new born babies. I’m not sure exactly what happened leading up to my mom being tested for HIV but she was and with that test she found out that she had AIDS. The baby she was carrying was most likely going to be born ill. Raymond Antony Miller was born prematurely in September of 1990. He was so small he could fit in the palm of my mother’s hand. He stayed in the hospital for a long time. I remember my mom saying that she asked God to just let him come home long enough to wear all his clothes and after 3 month he was able to come home. On the morning of valentines in the year 1991 I remember waking up and seeing red lights flashing outside of the window. It was an ambulance. I didn’t know that when I opened the door and walked out I would see a bunch of strangers in the apartment. I quickly turned and closed the door to the bed room and got under the covers I didn’t know it at the time but they were in the house trying to resuscitate my 5 month old baby brother. Raymond died that day. His little lungs gave out while he was asleep. Somehow I don’t think I was really upset or sad because I didn’t really understand. When I look back now I think I would have had ill feeling towards him because of what his father did to me.

Shortly after the death of the baby my mom was told by a nurse that if she wanted to survive with AIDS the best thing for her to do would be to move back to California. She pack up the things that we were able to carry including the goldfish my siblings and I got while trick-r-treating and she bought 5 grey hound bus tickets. I don’t remember much about the trip across the USA but I do remember getting off the bus in Los Angeles and meeting my grandma she was so happy to see us she took turns hugging and kissing all of us over and over again. Now that I think about it I know that took love because we had just spent 3 days on a bus and there were no shower breaks.

Even thou I was born in Los Angeles I felt like I was in a very different world. It was warmer and it felt less crowded. I was in aww at the grass that lined the sidewalks and to openness of the streets. My older sister and brother and I were bused to school. In New York our school was a short walk away. Living with my grandma was fun in the beginning

“Just write about it, any thing your feeling” Advice from ChefBlaze

Children having to accept and cope with death

Young adult afraid to commit because they surpassed their expiration date by years  and they fear that any day now they will cease to exist

Gay men exiled from their families, locked out of their churches and condemned to hell

Straight men shunned from their communities

Women murdered bloody bodies left cold on their bed room floor for their children to find

I am that child. I am that young adult, I am that women, I may not be a gay or straight man but we are on the same side of discrimination, stigma, hate, fear, and discuss.  I am an HIV warrior, survivor, advocate, educator, and example.

I live my life out loud. People tell me that no one needs to know my HIV status at the first hello but I honestly feel that the more I talk about it the better. If I can get through the fake people and move on to the ones who accept me as I am I can spend my time where it counts. I just decided right now that I dont have time for ignorance. If a person is misinformed about the facts surrounding HIV then I vow to educate them as long as they are accepting and receptive of the message that I have to share with them.

I promised a friend of mines that I would write when ever the feeling hits me. I have no idea where these thought came from but I feel good about the fact that I sat down and let it all out, Thanks for the advice ChefBlaze!

My mom

I feel that I need to uplift her image after my post from last night. My mom is a diamond in the ruff. She doesn’t have an enemy in the world. To know her is to love her. She is funny, very smart, poised, and confident. She didn’t have the greatest upbringing but she truly took the lemons life threw and she didn’t just make lemonade, she gave them to those who needed them. I’m blessed to have my mom. I only know 1 other person who has had HIV there whole life who still has her mom. Most positive children were raised by grandparents. My mom is a fighter and she didn’t only have her self to fight for she had me attached to her every step of the way. She took notice early on of the fact that all the positive children we knew were dying from toxicity. The medication that was supposed to be saving lives was taking it away. She didn’t make me to those pills and I can’t explain how I feel now to hear that her choice saved my life. She packed up all that we were able to carry in our book bags and a few suitcases and we moved 3000 mile from New York to California. My mom, My own personal superwomen with a 2 year old curious boy, 5 year old over sensitive clingy girl, 7 year old mischievous boy, 8 year old talkative girl, and a pitcher half full of water and 4 gold fish on a Grey Hound Bus, 3 nights and 4 days. My super women did it by her self and why? because a nurse told her if she wanted to live she needed to go where the care was being given. That nurse told her that a group called ACT UP was forming in LA and they were demanding access to the medications. This move saved my moms life and mines. She had us all tested in New York and no one gave her our results. She was offered a chance to get her kids tested again here in LA and she did. My test came back positive. She never got a call but a few months after having us tested she ran into the counselor from the testing center. The women asked her where I was and how I was doing and my mom was sure that the lady made a mistake. So for a third time I was tested and the results, positive. Had my mom not made the move to Cali I might not have ever been tested again. If my mom didn’t care about her self and go to her appointments she wouldn’t have ran into that counselor again. If my mom were not such a sweet and memorable person the counselor wouldn’t Have stopped her or even cared to ask about me. We are all human and we make mistakes. The problem is not in the mistake, the problem comes when we fail to learn from our mistakes. I love my mom even more then I love my hair!

“she killed me so I killed her”

http://www.dailymail.co.uk/news/article-2200564/Cicely-Bolden-Man-stabs-girlfriend-death-telling-HIV-sex.html

A man in Texas killed his girlfriend because she told him that she had HIV after they had sex. Hearing stories like this scares me because that could have been me many times before. I have had moments where I could have easily been that women in Texas stabbed to death because things happen some times and I’m only human I make many mistakes. I often wonder why God has protected me for so long. WHy has he allowed me to avoid people like that man in Texas. After high school I didn’t care about myself or anyone else so I was wild and I did somethings that could have gotten me killed but I was so blessed that God kept me. It wasnt untill my last birthday that I decided to stop trying to live a negative life, and by negative I mean HIV negative and negative as in wrong. I did make bad choices because I thought they were fun. I fell in lust with a few people and had sex and drank and hung out and didn’t tell anyone I was HIV positive. I had an excuse that made all this feel like it was ok even tho I knew deep in my soul I was wrong. Death was coming for me anyway so I decided to live my life the way I wanted to and then when I ended up in the hospital I was going to call and confess to those that I cared about and spend my last days asking God to forgive me. In my head my plan was going to work because I was going to die and if my friends hated me I wouldn’t have to deal with it because I wasnt going to be here any more and they would feel better about hating me because I was going to get what I deserved for deceiving them. DEATH! with some I thought I was going to work my way in to their hearts and then HIV wouldn’t change anything because they would love me for who I am and they would feel bad that I was going to die and mourn me. I now know that I was so wrong to think any of that. but when do you tell? this women in Texas certainly didn’t do it at the right time or place. I have tried telling people at the first hello but that left me feeling like a damaged good. I would hear “oh wow I’m glad you told me. It was nice talking to you” and then they would go away taking a piece of me with them. A painful secret that they didn’t need to know. Disclosure is a big issue I have had my whole life. I never had a problem talking to a room full of strangers but it’s so hard to tell the people who I consider to be my friends, people I hope to have some type of social life with. So at this point in my life I just don’t look for friends. I disclose by telling people to check out my website or google me and then call me if they still want to be my friend or call me if they want to ask me any questions. It took me a really long time to be ok with being alone. I still struggle with it, but I would rather be alone and be a voice to help educate, motivate, and inspire other than to be killed because I didn’t know how to tell someone who I really am.

May you rest in peace Cicely Bolden

 28 year old mother of 2 murdered after disclosing her HIV status

Why do I do this?

What is the goal of my blog? The goal is to let you know what its like to be me. I want to educate you on my life and what I go thru now and what I have gone thru in the past as a person born HIV positive. I want to share my passion for life with you and entertain an adventure thru my mind.

What topics will my blog cover? I plan on writing about anything that comes to my mind. Topics that you will certainly read about will be politics, health, current events, and anything that is going on in my life. HIV affects life in many different ways. I have stories that will make you laugh and stories that will make you cry.  Trying to have a social life while positive is very hard because others and their lack of information can lead to discrimination and I tend to tell you guys all about it.

Who is the target audience of my blog? I hope to target those who are going thru the same things that I am going thru and those who know nothing about HIV. I hope to educate some and remind others of how we can stop AIDS.

What do I hope to get from blogging? I have attempted to write my story into a novel but I have been diagnosed with depression for the last 2 years. I have moments when I feel like I can focus and get anything done and I also have moment when I am so sad and UN-motivated that I just can’t think of doing anything that requires my attention. On the sad days I might try to blog about the fact that I’m feeling sad but I honestly choose to ignore life and stare at a wall until I fall asleep. I have started my book several times but those sad days creep in and I look at how much I have done compared to how much I have left to do and I just seems like a never-ending task. I grew up waiting to die so I hate to admit it but I have never accomplished a long-term goal. I jump from project to project and if it takes to long I dump it and move on to the next. With blogging I find I can just do short post to get the idea out and it’s not too much to commit to at once. As I go along I hope to be able to piece my book together using my blogs and just tying them together to make sense.

Even this entry will somehow end up in my book. I hope that I am going about this the right way but even if I don’t end up with a book and even if no one reads my blogs I will feel good about the fact that I have a couple of my stories preserved in text. I feel words are the only way any person can live forever.

USCA Bound! Womens Task Force Peer Leadership Award Winner ME!

EXCITED!!!!! Las Vegas here I come!!!! And I’m not going for fun this time. I just came back from a 4 day trip with my mom, step-dad, and best friend. But in a few days I’m going to be out there again learning whats new and whats now about HIV in the USA. I can’t wait!!! I’m excited to meet new people and network with those who share my passion to end AIDS. Right before I leave I’m going to be attending the LA Womens Task Force Leadership Dinner where I’m going to be awarded the peer leadership award. I feel this is a great honor. I fear I haven’t actually done the work to earn it yet since all my plans are still premature but I will accept it and use it as fuel to push me to success. The Positively Beautiful Fashion show must go on. I feel like I could be and should be fighting harder to make this happen. I have a great team of supporters that is growing into something that can’t be stopped. Things are starting to change for me and I can almost see the light. I pray that I can keep up with the excellent changes that are coming my way!

Can I Hide?

TRYING TO HIDE

I RIP UP ALL THE DOCUMENTS THAT WOULD CLUE YOU INTO ME. CHANGED MY NAME TO ANGEL DOLL AND STOLE A HALO TO HIDE MY IDENTITY.

I DELETE ALL THE VOICEMAIL MESSAGES AND ERASE THE E-MAIL TOO. I WILL TAKE A MILLION EXTRA STEPS JUST TO KEEP MY TRUE SELF FROM YOU.

IF ONLY THE WORLD WOULD UNDERSTAND I WOULD CEASE TO LIVE IN FEAR. BUT DAY TO DAY IN MY SOCIAL LIFE IGNORANCE IS ALL I HEAR.

IF I TOLD YOU THE TRUTH WOULD YOU STILL BE MY FRIEND OR WOULD YOU RUN AND HIDE. IF I TOLD YOU THE TRUTH WOULD YOU TREAT ME THE SAME OR WOULD YOU FEEL I DESERVE TO DIE.

YOU MAY FEEL IN YOUR HEAD THAT YOU’LL BE THE SAME TODAY AS YESTERDAY BUT I HAVE HEARD THAT BEFORE AND IN THE END I KNOW YOU WILL RUN AWAY.

BEING ME IS DIFFICULT A NEW STRUGGLE COMES WITH EACH NEW DAY. I HAVE GOTTEN TO A POINT WHERE FOR MYSELF I REFUSE TO KNEEL DOWN AND PRAY.

I FEAR THAT THE CREATOR HAS PUT ME HERE AS A SPONGE TO ABSORB THE PAIN. I TRY SO HARD TO FIT IN I JUST DRIVE MYSELF INSANE.

TRYING TO HIDE MY REALITY I DRIFT INTO A ONE PLAYER GAME PUTTING ON MY MASK I ACCEPT THE TASK OF RUNNING AWAY FROM MY SHAME.

I wrote this poem about 3 years ago when I was just tired of being “that girl with HIV” I didn’t want to walk in my shoes any longer so I tried to take them off. I did every thing I could to get rid of those shoes but despite how hard I tried they are still here.

All i have to say is that…

“All i have to say is that hiv/aids has a grisly effect on the human body and the fact that it can be spread so easy is scary, and im not saying the meds are a bad thing but what people need to understand is that hiv/aids isn’t going to go away any time soon and with the rates of infection so high. I feel that to truly stop this disease a viral genocide has to happen, im sorry for saying it but its the further generations that count” -youtube subcriber graybrian22

Ignorance is still very much alive. Instead of taking the responsibility of getting tested, learning, and passing the information on how to protect ones-self some people have a belief that HIV will go away if we just get rid of positive people. I say to the people who feel like this is a solution. YOU might need to go get tested! it is that type of thinking that makes this virus spread the way it does. Those who feel that the virus will be gone if you kill of positive people I ask this question, do you think a girl who looks like me and feels healthy like me would ever opt to be tested knowing that a positive result would mean she has to be killed? I was born this way. I had HIV before I ever did any thing to put myself at risk so I would run from testing centers thinking I had nothing to worry about. this would be worst than me knowing and taking the proper steps to prevent spreading the virus. The truth is the majority of the people who are spreading the virus don’t even know they have it.

Changes Changes Changes

So much to do so little time. I am in the process of trying to find an apartment. This is so hard! I’m realizing that even after being approved for section 8 finding a place is not easy. I must have a working refrigerator and range before section 8 will approve the unit. I can’t afford to buy these things. HOPWA offers a move in grant that will take care of the security deposit and any deposits required for the utilities but gas and electricity must be paid monthly. I’m working with an income of $221 per month which hardly takes care of my car insurance and cell phone bill. God forbid I want to watch TV or use internet at home. I have no idea how having a permanent address of my own is something I can manage with such a little income. My focus is scattered at this point. I want to go ahead and find a place and live like a normal adult with 4 walls that I can call me own but this is hard. I am in need of income, not right now, but RIGHT NOW! I’ve had normal jobs in the past but my illness has made it difficult for me to hold any job for longer then 6 months. When I start to work I begin to stress out and I see a negative change in my health. My t-cells drop my viral-load rises and I end up with blood pressure problems, unexplained stomach pains, and massive headaches, How am I going to buy furniture? What will I sit on? What the heck am I getting into? Sure I’ve lived alone before but I made plans way ahead of time and I had something to start with. How to I start with nothing and create something?