March 16, 2012
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. I get up and make my breakfast. I think about a birthday party I will attend over the weekend. I think about what I will wear, I think about the gift I will bring. I look into my living room, and laugh at my two Chihuahua's, excited about something outside the window, and it makes me smile. Then I get my med box and vitamins and remember that I stilll have HIV. For those two minutes, I let my mind wander to a place where HIV was not present, but after twenty one years since my diagnosis, I know my HIV will never go away, I know it will always be with me -- unless they find a cure.
My story is not unlike so many other HIV afflicted patients. I contracted the virus from my first boyfriend in 1989 through unprotected sex. I was just sixteen years old. I am thirty eight years old now..soon to be 39 on April 11, and I live with my partner of four years, Lisa, in Miami, Florida. I have been living with HIV for a long LOOOONG time! I have seen it all! The good, the bad, and the ugly of this illness!. Like so many women, my male partner had never been tested and was unaware he was infected. He passed the virus onto me through unprotected sex. I did not realize I had contracted the virus until a random blood test for job corp when I was turning 18. I am similar to others with HIV, and I am also a fighter. My passion is dedicating my life to fighting the stigma, educating the young, and spreading the word to get tested. I was just a young kid..that had been abused, tormented and damaged. As a kid and teen before my HIV diagnosis, my life's direction was to have fun, like most sixteen year old kids, except twenty some years ago they did not have posters, and pamphlets, and the internet. I am now an activist, LGBTQA supporter/activist, mentor, and educator for others with HIV, especially in the Hispanic community or cimmunities of color.
I am the daughter of Colombian 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. My uncle started sexually molesting me at age of three, unknown to my parents. This was a confusing period growing up as a victim of abuse. Things like this were not spoken about in my strict Hispanic household. I endured this abuse for years and then eventually came under the mental and verbal abuse of my autocratic, mentally unstable father. He ruled the home with a tyrannical fist. He not only verbally abused me, but my mom as well (I have now forgiven my father ). My mother eventually left my father, but not until I had been placed in a series of foster homes, and taken away from my family, by social services. At thirteen, I 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, I started keeping company with a family that took care of me ... a refuge from the outside world, a family not unlike myself, a gang family. For me, this group was a social structure of other teens, from similar backgrounds. I 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 me feel special. It had been a long time since I had felt special. Like most teens our age, we had our whole lives in front of us, plenty of time, and nothing to learn. We lived a nomadic life, gang banging for money, etc.. eventually I wanted to change my life around, making my way to Kentucky where I enrolled in Job Corps.
During the Entry process, I was asked to take a random drug, pregnancy and blood test. I really did not think anything about it when they asked me. Although I had heard of HIV and AIDS, I knew it was a gay man's disease or for drug users or prostitutes! Not me. I was not prepared for the news I was about to receive. I remembered being called back to the testing clinic for a meeting. I walked into the small room, sat across from the clinic's doctor unaware that my whole entire life was about to change. The doctor delivered the devastating news that I had AIDS and DID NOT PREPARE ME and that I could stay or go home and prepare to die. There was nothing that I could do. I felt sick to my stomach, I felt fear, shock, and saw my whole life pass in front of me!! And for a while, probably months, I just walked around in a complete fog. I felt like my mind was outside my body, just trying to absorb the news. I had so many questions. How could I be HIV positive? I wasn't a commercial sex worker. I didn't use needles. I wasn't in the right demographic. I was just going to go to school and they told me I had AIDS and was DYING??. It felt unreal. I went home and looked at my fresh and healthy face in the mirror. I did not look sick. I did not feel sick. Then I cried, and cried, and cried some more. This disease, this AIDS, it was what gay men had, not me.
I contracted HIV from Flyskee. Flyskee, was young, uneducated and experimenting with IV drug use..and I didnt know this!. 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, we did not know about safe sex. . Some years later I heard Flyskee had died of AIDS. I really did not know how to feel about his death. I was sad. I 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. I, like many people who were told they had AIDS, fell into a deep depression, and some even think about suicide. After all, I was scared! I feared telling my family. I went through periods of denial, and did not know where to turn. I reunited with my mother in Miami who was my rock from day one, she has never cried in front of me! I had AIDS. Not knowing much about the disease herself, my mother turned to prayer, and we agreed to keep it to ourselves and tell no one else in the family or friends. The stigma attached with HIV/AIDS was so strong, My mother and I both feared being ostracized by family and community. It was too strong for either of us 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". .
I tried to keep busy never knowing how much time I had left in her life for sure I knew it wouldnt be more than 10 years, so I would make it to 28! On April 11, I will be 39. I volunteered and learned more about the disease that affected me and so many others. I trained with the International Red Cross, took classes at U.M and also the health dept trained me to be a tester and I become a pre- and post- counselor for HIV/AIDS services. I knew from my classes that there were many people who needed to get the correct AIDS/HIV information, and treatment. I knew also that they responded to me and I had a gift to get through people, and people listened to me, and that I could help. I felt, even in those dark days in the beginning that I had a new life mission.
Feeling like I suddenly had a purpose and duty, I felt revitalized about what my life should become. Maybe having AIDS was a message, for me to speak for those who were afraid to speak, to teach those who needed to learn. I had a life mission. Unfortunately, being in my HIV denial, and after going without medication for 10 years after my diagnosis, My illness started to get worse. I tried eating health food, and living the best life I could live, but with AIDS, you can never really feel safe, with AIDS it never really goes away. I started suffering from some of the symptoms that all HIV/AIDS patients experience, nausea, fever, fatigue. Knowing I would be dead if I did not seek medical treatment, I knew that avoidance and denial were not going to help me ... I discovered that even a simple cold could cause me to be ill for weeks, and I had difficulty recovering. Untreated, AIDS will eventually lead to death. Medication is the only answer.
I faced an uncertain future. my infectious disease doctor retested me and told me that my 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 along with a viral load test. I was dangerously close to death. I know, "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". I continued to take my medication, despite the side effects. I wanted to feel better, and I was willing to give the medication a chance. Every day is a struggle for me as everything in life -- ups and downs, -- and for the thousands of people like me YOU ARE NOT ALONE, but I, myself, will never give up hope for a cure.
I was in "the HIV closet" for many years, and many never knew about my positive status, it was not something I 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 , we have been compared to Hitler in some ads! Posters like these are everywhere and they fuel STIGMA. Inside, I was safe. Inside, no one could judge me (but now its not all about me). When I came out, only a handful of people knew my 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" (I have been blessed that no one has ever discriminated me). But for some people's experience they tell me people 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 I remembered 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)'. I thought to myself, "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. I knew that I could reach them". There simply were not enough pretty Hispanic women who were willing to expose themselves to get the message out. So finally, after a good cry, and a nervous stomach, I got angry enough to "come out"... out of my HIV closet..I started posting and telling my story everywhere (blogging for The Well Project (A Girl Like Me) and TheBody.com I became a media activist...I am everywhere...Youtube, Twitter, magazines. I founded two huge international support groups in Facebook for people infected and affected in Spanish and English I am a public speaker and a fierce activist! I am very active in Facebook (see links below) so many people from all over the world can contact me. I am not a doctor, but I know the right things to say. I have been professionally trained. I always encourage people to talk to their health care professionals. I tell them that everyone is different and that not every patient needs to be on the same medication. Most importantly, I tell them to do their homework (RESEARCH). I encourage them to read and educate themselves on every reputable site they can find like I did, talk to counselors and medical personnel, pharmacists, scientists. My 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 and others. I must admit, "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 as I always say! People need to understand that.
My days are brighter now, my partner and I, enjoy a relatively happy life. I still have bad days (who doesn't?) but I have some good ones too :). Lisa and I are active in our community, working with both AIDS patients and patients of need in various areas. We enjoy the beach and our doggies, and art galleries, shopping, concerts, traveling, etc... 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. I am 100% compliant with my medication, as all HIV patients need to be. I am an advocate for healthy eating and organic foods. I recommend a good massage, particularly for those folks who suffer bone pain or neuropathy as a result of HIV. I promote regular HIV testing, as my HIV-negative partner, Lisa, is tested regularly:). I protect her! I have completed many college certificate programs for counseling and education for HIV/AIDS programs, and continue with my outreach work. I speak in churches, schools, and I am solicited by groups who want me to come and share my story. By the way, whoever gets into this thinking we are getting paid, (NO) we dont get paid to blog, most of our presentations are pro bono, the time spent helping others and saving lives is my PAY! I know I have a story to tell, and I also know that there are others who have similar HIV stories. My story might be a little different in some places, and in some places, it might be the same, but my message to young 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, eat healthy." That is my message.
At the end of the day, I, like so many people dealing with HIV/AIDS, have to look at my face in the mirror. The face is the same, it ages a little, but the story is still the same and I thinks to myself, "It's Friday ..I Still Have HIV. This April I will be celebrating another year with HIV! I have HIV, HIV doesn't have me! And I didn't die after all!
Much Love and Light,
Maria T Mejia
Maria's Facebook page: https://www.facebook.com/mariahiv
Facebook Group (English): International place for people with HIV/AIDS, and the people who love us
Facebook Group (Spanish): GRUPO INTERNACIONAL PARA PERSONAS CON VIH/SIDA,Y LAS PERSONAS AFFECTADAS