It started with Timothy Brown AKA The Berlin Patient AKA The first Person to be cured of HIV. He found out he was HIV positive in 1995. His life was saved by the medication that made living with HIV a reality. In 2006 he received a new threat to his life, leukemia. he under went chemo therapy just the same as many cancer patients but the leukemia came back. the next step was a bone marrow transplant.
Many years ago there was a documentary on people who were resistant to HIV. It was late one night and I couldn’t sleep so I flipped through the channels and stopped on one with a graphic showing how HIV entered a cd4 cell. I remember them following a man who described how he began to lose all his friends due to complications of AIDS and he noticed that many of them were former lovers of his. He heard that the virus was contracted sexually and when his current lover began to show signs of sickness. they both went to get tested. His lover was infected but he was not. He described to the doctor that several of his former lover had already died and his current lover is ill so clearly the test was wrong and he had to have this virus as well. but test after test came back negative for HIV. He began to ask how is it that other were contracting HIV from practicing the same behaviors as and he wasn’t further test showed that his cd4 cells did not have the receptors that HIV needed to latch on to in order to take over and infect it. This meant that even if the virus did enter his body it was unable to replicate so it would simply die causing his to be resistant to HIV.
Now back to Timothy Brown.
His doctor, Gero Hütter, didn’t know very much about HIV but he was aware of the fact that a genetic mutation, called delta 32, disables the CCR5 receptors on the surface of the CD4 cells. If a person had two parents with delta 32 they were completely immune to HIV. T. Brown was in need of a bone marrow transplant, and the CD4 cell is produce in the bone marrow. Dr. Hütter was on to something that no other doctor had ever tried before. An HIV resistant bone marrow donor would cure T. Brown of leukemia and produce HIV resistant CD4 cells curing him of HIV as well. Long story short IT WORKED!!!!!!! Dr. Hütter found 232 donors worldwide who were matches for Brown. They worked through the list testing each of donors for the mutation. Donor 61 was just what the doctor ordered!
While the rest of the world was focused on improving treatment and creating a vaccine AIDS researchers and clinicians had accepted the beliefs that a cure was impossible.
Cure stories are starting to pop up all over. First Timothy Brown then the baby in Mississippi is treated and cured, now a 12 year old boy has received a cord blood transplant in hopes to cure his leukemia and HIV. My fingers are crossed! Maybe soon I will be telling the story of how I get cured.
This is different. I have had a few relationships in the past where I thought I was accepted despite my Positive status. I was so use to being accepted only in the shadows. I still have people in my life who are ok with having a friend who is HIV positive as long as no one else knows. I can remember being invited to share my story at a school and being told by the person that I was dating at the time that I can’t do it because they knew people who lived near that school. The fear was in the fact that somehow his friends would find out that the women he “loved” was HIV positive.
The relationship that I’m in now is so different from anything that I have ever experienced. I have been in relationships with women before but never anything that was truly open and honest so it was never serious. She took it upon herself to tell her friends all about me. I was afraid to accept them to my facebook page for fear of them finding out that she was dating an HIV positive woman. She told me that she had already told them and they were just as ok about it as she was. This relationship is one that allows me to be me. I don’t have to hide anymore and that feels amazing.
We went to the book store with a friend of hers who is now my friend as well. We will call her Ricky. Ricky shared a very intimate story about how she was once taken advantage of. This got me to thinking about the times in the past when I was in similar situations. Trying to keep my diagnosis a secret has often lead me to playing the role of the oblivious girl right on the verge of danger. I explained a situation to her that I worked really hard to forget.
I was about 19 and in one of my depressed moods. I turned to my normal reckless behavior to get over it. I called the party line and hooked up a date with some random stranger. I had him pick me up at the library and we went to get something to eat. After that I expected to get dropped off back at the library. He said he wanted to show me something. He got on the freeway and drove to a city I was unfamiliar with I asked where he was taking me and he said “You will see soon it’s a surprise.” My heart beat quickened and I contemplated telling him about the fact that I was born positive as a way to make him change his mind if he had bad intentions. That could have ended very badly. He got off the freeway and I made up my mind that I was getting out of that car at the next possible chance. I slowly took off my seat belt, He stopped at a red light and I quickly jumped out the car and ran in the opposite direction. I looked back and saw him get out the car to close the door. I kept running and didn’t look back any more. I saw a city bus and I waved hysterically praying that it would stop. The driver opened the door and I jumped on board. I told the driver that I was on a date and I was afraid that he was going to try to hurt me. I was in tears as I explained that I had no idea where I was and I didn’t have any money but if I could get close to the Downtown Union Station I could get home. The driver gave me a day pass and told me he would tell me where to get off and what bus I needed to get to where I was going.
I asked Ricky if she knew about me being positive after sharing this story with her. She just shook her head yes. I told her that we all have reasons for doing reckless things but during those times we needed to turn to the people who we know we can trust. She was very clear about the fact that she was now one of those people for me and I was one of those people for her. She and I both dropped a few tears while sitting in the café of the book store and I could tell that she would be one of those people who would be in my life for a very long time. This relationship is bringing on more positive relationships and it’s pulling me out of the shadows.
For a really long time I found it hard to love and even harder to trust. She and I are not perfect people and we both have a lot to learn about the other but I don’t see us ever having a problem that we can’t work out.
I’m looking forward to reading a book titled The Five Love Languages. I was advised by a friend that it would benefit me in all situations when communicating with others. Look forward to the growth and strength I will gain from this book.
I have started my journey to having a happy life. The summer ended on a high note for me. And autumn was filled with positivity. November 8-11, I attended Spectrums Freedom Course where I learned how to change my way of thinking and reacting in order to get more out of life. (I was invited to go to the class by a person who I had no idea at that time would be such a major part of my near future.)
On November 30, 2012 I returned to my apartment, after being gone for three days, to find it was not as I left it. The two televisions that were given to me were gone along with my entire DVD collection, my DVD player, my laptop, my printer, all of my tools and products for styling hair, my jewelry, two purses and their entire content including the digital camera I earned for my participation in UCLA’s Through Positive Eyes project. The window in my bathroom was broken and dirty hand prints marked the walls of my shower. My bed room was ransacked. I felt so violated and I wanted to fall in to the role of the victim. I felt as if I had called this onto myself. I can be quoted saying “I don’t have anything” I repeated these words to everyone whenever I spoke about finally getting my own place.
So from now on I choose to acknowledge what I do have. My really nice super soft sofa and cream colored chair that I was blessed to buy for $40, the 2 burgundy arm chairs gifted to me by my doctor, the Microwave gifted to me by the women I call my second mom, a black stove that I bought for only $50, a borrowed mini fridge that gets the job done, and a closet full of clothes. They may not all fit but I also have the ability to slim down and change my body or slowly work on getting new clothes.
Now back to the person who invited me to this life changing weekend seminar; I feel like each day brings me closer to her. She was one of the few people who didn’t react or ask a million questions when I told her about me being HIV positive. She invited me to participate in the Freedom Course with her and to this day she reminds me to use the lessons that I have learned to help me deal with my stressors. While in the class we were invited to be open about our feelings and honest with the people in the room as a way to ensure that we get the most out of the course. I stood up on the 3rd day and told 14 other students and staff that I was born HIV positive. On day 4 I didn’t want to go back because I was sure no one would want to sit next to me or talk to me but to my surprise everyone still accepted me and offered to hug me. My disclosure didn’t have to come with an explanation or apology. I didn’t have to go into educator mode just to make them feel comfortable with me being in the room with them. I felt “normal.” I felt like I put way to much energy into those three letters. I sat in that room the first 2 days with my preconceived notions and assumption and I did to them what people normally do to me. I judged with no evidence and I stereotyped everyone to be closed minded and uneducated on the facts.
Shortly after finishing the class I started to look into myself and try to locate the things that truly bring me joy and pleasure. I have accepted the fact that I have an opinion in the turns my life will make. I have spent 27 years trying to please others but my life is my story to be written by me. First major discovery about Lynnea’s life, she prefers dating women. I’m sure this will surprise a few people who thought they knew me but to those who really know me this shouldn’t be a surprise…… to be continued…
I just completed the freedom course of the Spectrum Life Design Program. In the class I have learned so much about how I can re-create myself. The first thing I need to do is except the things that I fight with and realize the more I fight the harder I make it. I also learned that my feeling like I am nothing is not bad. To create is to make SOMETHING out of NOTHING! I am on the right path and excited about who I am going to become.
I will no longer be the girl that has great ideas that dont materialize. I am the author of my life and my success is not optional IT IS A MUST!!!
I was given the chance to look deeply into my own thought process and pin point what makes me feel the way I do. I was in the habit of blaming and playing the victim instead of looking at the things that I do to make myself feel like I am right. I have the option to live my life guilt free and un- victimized
I have made a choice to accept only positive thoughts. This means I have to stop the “feel-bad-for-me” post. I claim
A FLAT TUMMY!
2X’S MORE HAIR THEN WHAT I CUT OFF
A SUBSTANTIAL RELATIONSHIP
AND ALL THINGS GOOD AND PURE, EASY AND STRESS FREE
I am the creator of my destiny, the author of my life, and I am ready to do the work to make my dreams a reality! I suggest you jump on board and claim some greatness of your own. You get out of life what you put into
…. 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
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!
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!