Thursday, April 14, 2011

Maria's HIV Story; It Friday and I still have HIV; Video Blog; and written story.

I've been very fortunate to meet Maria online and communicate with her, and am looking forward to meeting her in person. While our stories are very different, we share the same passion with countless others who are rising up, standing out, and speaking up about HIV/AIDS.  That passion is telling our stories, educating people about HIV/AIDS, breaking down the stigma, and most importantly encouraging people to know their status.

I only hope my 7 and 4 year old nieces are armed with the knowledge and make the right choices. And one day I hope they will have an opportunity to meet such a strong and powerful Woman as yourself! 

Her story is very empowering, encouraging, educational, and inspirational. Thank you Maria for doing your part to make people more educated, and safer when it comes to HIV/AIDS. Your story moved me to tears, but it is a story that young people and old a like NEED to hear.

Thank you for allowing me to share your story on my blog. AND I will stand in line hand in hand with you and the 34 million others when we have a cure.



Current global statistics state that an estimated 34 million people globally are living with human immunodeficiency virus, the virus that causes AIDS. In the thirty years since the discovery of the virus, much has changed, yet so many continue to struggle to live with the disease, a disease that science still does not completely know how to fight.

Maria Mejia gets up and makes her breakfast. She thinks about a birthday party she will attend over the weekend. She thinks about what she will wear, she thinks about the gift she will bring. She looks into her living room, and laughs at her two Chihuahua’s, excited about something outside the window, and it makes her smile. Then she gets out her med box and remembers that she still has HIV. For those two minutes, Maria let her mind wander to a place where HIV was not present, but after twenty years since her diagnosis, she knows her HIV will never go away, she knows it will always be with her - unless they find a cure.
Maria’s story is not unlike so many other HIV afflicted patients. She contracted the virus from her heterosexual partner through unprotected sex many years ago.  She was seventeen years old.  She is thirty eight years old now, and lives with her partner of five years, Lisa in Miami, Florida.  Maria has been living with HIV for a long time. Like so many women, Maria’s male partner had never been tested and was unaware he was infected. He passed the virus on to her through unprotected sex.

Maria did not realize she had contracted the virus until a random blood test for a job produced her diagnosis. Maria is similar to others with HIV, but she is also a fighter. She is dedicating her life to fighting the stigma, educating the young, and spreading the word to get tested. She was just a young kid looking for a job before her HIV diagnosis, her life’s direction was to have fun, like most seventeen year old kids, and except twenty years ago they did not have posters, and pamphlets, and the internet. Maria now is an activist, LGBT supporter, mentor, and educator for others with HIV, especially in the Hispanic community.
Maria is the daughter of Columbian immigrants, who came to the United States for a better life. Like many immigrants, they found that the American dream wasn’t always the dream they expected. Maria’s uncle started sexually molesting her at age three, unknown to her parents. This was a confusing period growing up as a victim of abuse. Things like this were not spoken about in her strict Hispanic household.

Maria endured this abuse for years and then eventually came under the mental and verbal abuse of her autocratic, mentally unstable father. He ruled his home with a tyrannical fist.  He not only verbally abused Maria, but her mother as well. Maria’s mother eventually left her father, but not until Maria had been placed in a series of foster homes, and taken away from her family, by social services.  At thirteen, she ran away from the foster system in Florida, and spent some considerable time living on the streets.

Soon after, alone, young, with no one to turn to, Maria started keeping company with a family that took care of he; a refuge from the outside world, a family not unlike herself, a gang family. For Maria, this group was a social structure of other teens, from similar backgrounds. She became the girlfriend of the gang leader, Flyskee, another “kid” just trying to get by in the world; being the girlfriend of the gang leader made Maria feel special.  It had been a long time since she had felt special.  Like most teens their age, they had their whole lives in front of them, plenty of time, and nothing to learn. They lived a nomadic life, working odd jobs for money, and eventually making their way to Kentucky where they heard about work with an organization called Job Corp.

During the interview process, Maria was asked to take a ransom drug and blood test. She really did not think anything about it when they asked her. Although she had heard of HIV and AIDS, she knew very little about the disease. She was not prepared for the news she was about to receive. She remembers being called back to the testing clinic for a meeting. She walked into the small room, sat across from the clinic's counselor unaware that she her entire life was about to change. Maria's counselor delivered the devastating news that Maria had AIDS and that she should go home and prepare to die. There was nothing they could do for her. Maria felt sick to her stomach, she felt fear, she shook, and for a while, probably months, she just walked around in a complete fog. Maria said she felt like her mind was outside her body, just trying to absorb the news. She had so many questions. How could she be HIV positive? She wasn’t a commercial sex worker. She didn't use needles. She wasn't in the right demographic. She applied for a job, they told her she had AIDS and was dying. It felt unreal. Maria went home and looked at her beautiful face in the mirror. She did not look sick. She did not feel sick. She cried, and cried, and cried some more. This disease, this AIDS, it was what gay men had, not her.

Maria had contracted HIV from Flyskee. Flyskee, was young, uneducated and an IV drug
user. He didn't know about his HIV status, in fact he probably did not know much about AIDS at all. Back then, they didn’t know about the safety of condoms, they did not know about safe sex. Maria didn't know Flyskee was an IV drug user, and this too was before the needle sharing prevention programs were available. Some years later Maria heard Flyskee had died of AIDS. She really did not know how to feel about his death. She was sad, and she was angry, angry that Flyskee had done this to her. She was living in a black hole.
That was in 1991, one year after congress enacted the Ryan White CARE Act, which allowed care for persons suffering from HIV and AIDS to receive treatment, drug treatment, which at that time, consisted of roughly three antiretroviral drugs. Maria, like many people who were told they had AIDS, fell into a deep depression, and thought about suicide. After all, what did she have to live for? She feared telling her family, she went through periods of denial, and did not know where to turn. It was at this time, that she reunited with her mother in Miami, and finally told her, she had AIDS. Not knowing much about the disease herself, Maria’s mother turned to prayer, and they agreed to keep it to themselves and tell no one else in the family. The stigma attached with AIDS was so strong, Maria and her mother both feared being ostracized from their family and community. It was too strong for either of them to deal with at that time. Much of the information on HIV/AIDS was published in English; so many non-English speaking patients did not understand the need to get on medication as soon as they were diagnosed. Many in the Hispanic community in 1991 thought AIDS was the “gay person’s disease”. Some people thought you had to be rich, or have good medical insurance to afford treatment. Maria and her mother did not know where to turn. They were confused, and felt like no one would help them if they disclosed Marias condition.

Maria tried to keep busy never knowing how much time she had left in her life. She volunteered and learned more about the disease that affected her and so many others. She trained with the International Red Cross, took classes with Orasure to become a pre and post counselor for HIV/AIDS services. She knew from her classes that there were many people who needed to get the correct AIDS/HIV information, and treatment. She knew also that they responded to her, and listened to her, and that she could help. She felt, even in those dark days in the beginning that she had a new life mission. Feeling like she suddenly had a purpose, Maria felt revitalized about what her life should become. Maybe having AIDS was a message, for her to speak for those who were afraid to speak, to teach those who needed to learn. Maria finally had a life mission.

Unfortunately, being in her HIV denial, and after going without medication for many years after her diagnosis, Maria’s illness started to get worse. She tried eating health food, and living the best life she could live, but with AIDS, you can never really feel safe, with AIDS it never really goes away. She started suffering from some of the symptoms that all HIV/AIDS patients experience, nausea, fever, fatigue. Knowing she would be dead in a few years if she did not seek medical treatment Maria knew that avoidance and denial were not going to help her. Her symptoms were like other patients with AIDS. Nausea, diarrhea, and vomiting, all of which can last for months, all of which will wear down any patient, taking every ounce of strength a body has. Thrush in the mouth and painful mouth sores are also common, which cause loss of appetite in patients who need to eat the right foods in order to retain their strength. Many, people, including Maria, suffered from a painful condition that includes tingling and needle-like stabbing in their feet called neuropathy. So bad can the pain be with neuropathy, some people can barely walk. Maria discovered that even a simple cold could cause her to be ill for weeks, and she had difficulty recovering. Untreated, AIDS will eventually lead to death. Medication is the only answer.

Marias mother returned to Columbia leaving Maria in the United States to get treatment. Alone, sick and scared, Maria faced an uncertain future. Her infectious disease doctor retested her and told her that her CD4 T-cell count was 39, dangerously low. CD4 cells are one particular type of immune cell that helps the body fight off infection, and tests to monitor CD4 cells are considered a major factor in determining how a patient will respond to antiretroviral therapy. Often times the central nervous system is affected, resulting in memory loss, headaches, unusual nightmares. Some patients develop Kaposi’s sarcoma, painful sores all over their bodies. Maria’s immune system was so compromised; she was dangerously close to death. Maria knows, “If the disease isn’t bad enough, the side effects of some of the medication are even worse. “Some drugs are toxic, they kill the virus, but are very hard on the body”, still she continued to take her medication, despite the side effects. She wanted to feel better, and she was willing to give the medication a chance. Every day is a struggle for Maria, and for the thousands of people like her, but she herself will never give up hope for a cure.

Maria was in what she calls “the HIV closet” for many years, and many never knew about her positive status, it was not something she openly discussed. This is where HIV infected people stay, away from judgmental eyes, away from the prejudice of a disease that many everyday people do not understand. The stigma associated with AIDS is still very strong, and spreads fear to the general public. Posters of naked people, sleeping with human size scorpions hang from the walls of clinics as a deterrent to those who choose not to practice safe sex. Posters like these are everywhere. Inside, Maria was safe. Inside, no one could judge her. When she went out, only a handful of people knew her secret. It’s a dark lonely place, where depression, anxiety and isolation only add to the misery. “You can never be too sure how people will react if you tell them you’re HIV positive. They think if they talk to you, they are going to catch it. They are afraid of you. That’s how much they really do not know about AIDS”.

One day in 2009, Maria remembers reading an article on HIV and the Hispanic/Latino population in the United States. It said, ‘ According to the United States Department of Health & Human Services, the Center for Disease Control, Hispanic/Latino women represented a quarter (24%) of new infections among Hispanic/Latinos in 2006. Their rate of infection was nearly four times that of white women (14.4/100,000 vs. 3.8/100,000)’. Maria thought to herself, “This is not getting any better, those girls, those kids, they are just like I was. They need to listen to someone like me. They NEED to have someone tell them how to protect themselves. They need someone who looks like them, and who speaks like them. She knew that she could reach them”. There simply were not enough young, pretty Hispanic women who were willing to expose themselves to get the message out. So finally, after a good cry, and a nervous stomach, Maria got angry enough to “come out”… out of her HIV closet.

She started posting her story on some support websites for HIV and AIDS patients. Then she started a blog on Facebook so others could contact her. Maria is not a doctor, but she knows the right things to say. She has been professionally trained. She always encourages people to talk to their health care professionals. She tells them that everyone is different and that not every patient needs to be on the same medication. Most importantly, she tells them to do their homework. She encourages them to read and educate themselves on every reputable site they can find, talk to counselors and medical personnel, pharmacists, scientists. Maria’s biggest message to anyone is “get tested”. The sooner you get tested, the sooner you can start medication that may prolong and save your life. Maria admits, “Some people do not want to know, but they need to…for themselves, for the people around them. AIDS is still a disease that will kill you, but is manageable with the correct medication.  AIDS is not a death sentence; it is a LIFE sentence People need to understand that”.
Maria’s days are brighter now, she and her partner of five years, Lisa Laing, enjoy a relatively happy life. Maria still has her bad days, but she has some good ones too.

She and Lisa are active in their community, working with both AIDS patients and patients of need in various areas. They enjoy the beach and their dog, and art galleries. It is a long way from that lonely, sick kid who had nowhere to go. Far away from that kid who lived on the streets with the gang. Maria is 100% compliant with her medication, as all HIV patients need to be. She is an advocate for healthy eating and organic foods. She recommends a good massage, particularly for those folks who suffer bone pain or neuropathy as a result of HIV. She promotes regular HIV testing, as her HIV negative partner Lisa is tested regularly. She has completed many college certificate programs for counseling and education for HIV/AIDS programs, and continues with her outreach work.

She is now speaking in churches, schools, and is being solicited by groups who want her to come and share her story. She is interviewed by radio stations in both English and Spanish, and she has modeled for pharmaceutical companies in their HIV campaigns.  Maria is fast becoming the face of people living…..LIVING… with HIV. Maria knows she has a story, and she also knows that there are others who have similar HIV stories. Her story might be a little different in some places, and in some places, it might be the same, but Marias message to young Hispanic teens is always the same, “I have to get to these kids, they have their whole futures in front of them. I don’t want them to live it like me. Get tested, practice safe sex, use a condom, take your medication, and eat healthy.” That is her message.
At the end of the day, Maria like so many people dealing with AIDS/HIV has to look at the face in the mirror. The face is the same, it ages a little, but the story is still the same and Maria thinks to herself, “its Friday…..I Still Have HIV.”


Author: Shelley Kametler
Edited : Carolyn Farkus

If you would like to contact Maria directly you may e mail her at mariahiv1111@yahoo.com or mariapositive1111@yahoo.com

You can follow her on the following sites as well:

http://thesop.org/story/20110329/judyth-piazza-chats-with-maria-mejia-advocate-for-hiv.html

http://www.stoppingthehate.com/

http://sdgln.com/news/2011/03/22/maria-mejia-brings-powerful-voice-women-living-hiv

http://afanlv.wordpress.com/2011/03/21/the-real-deal-with-hiv-when-do-you-tell-with-aids-activist-maria-t-mejia/

http://issuu.com/recorriendoamericanews/docs/recorriendo29/17

http://girllikeme.org/author/mariateresa1111

http://www.thebody.com/content/art60432.html

http://www.vihvir.com.ar/tiempo-de-contar-mi-historia

2 comments:

  1. Maria you are beautiful and thank you for your courage. I would love to get to know you. I have been poz for 24 years myself and what a ride it has been in every possible way. Feel free to email me at my Google account....thanks.

    ReplyDelete
  2. I like the way you describe your points in this article. Your article is pretty remarkable, and I really enjoyed reading it

    ReplyDelete

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