Sonya posted a new blog, Why the Wait? on A Girl Like Me’s Voices from our Allies:
I am so upset about the fact that my friend tested positive 2 months ago, and to date has not seen a doctor! Not to mention the health department leaving a note on their door stating it was urgent to please call a number…. It seems to me that all of this energy and encouragement to get people tested, we are somehow dropping the ball on the next step. How could this happen? Tell me why this is happening here in Florida and no one seems to be alarmed.
Once you get tested and find out you are positive, that in itself does something to a person! I know you couldn’t imagine the turmoil their heart and minds go through unless it’s happening to you. Now, the wait of a doctor…30 days and counting, medication, and the little voice in your head asking, “Am I going to live or die?” How much more can a person take? You have a case manager who is the middle man for you and the HIV world, but things are moving in slow motion…literally.
Emotions, heartache, body chills, and your world appear to be spinning out of control. Yes, you got tested, and yes…you now have your diagnosis and now the wait to see a doctor and receive your medication is ridiculous. Can someone please explain to me why it’s taking so long for someone to see a doctor about their HIV in Florida?
Wow that time again? Another blog and I am enjoying the chance to reflect and share. Thank you AGLM. I felt fabulous when I received feedback and comments when my blog reached publication. Such a sense of belonging…tick that box! My other to do list, well… I have listened to the rest of the Brené Brown course, but not fully participated. I got stuck with the comfort verses numbing, and numbed with the winter Olympics and Oreos! But I have ‘leant in’ to some discomfort, so not all avoidance and dulling the pain…yep Valentine’s Day came round again.
What is it about the florists celebration of 14th of February that makes me feel completely rejected because my ‘love interest’ didn’t buy into the hype? I should know better, years ago I got into some serious complications when my best friend recognised her boyfriend’s handwriting on a lewd offering. Those were the days when we would share our card selection at school as a kind of popularity contest (that was my best year…2!). I guess that is still how I feel…I want the roses delivered to my work place with an acapulco band declaring my beau’s love, so that everyone can see how wonderful I am! Yep, I confess, I need the public displays of affection, ‘leaning into’ why? I get a reality check, and know how a gentle word can make us feel we are truly loved, greater than display, if we listen. When I previously declared my status to my potential lover, and he said “ok, well, now I know. It doesn’t change how I feel about you.” Wasn’t that sweet music enough? That’s certainly when I fell completely in love with him, such acceptance. Shouldn’t I be able to accept that? With a man like that I don’t need roses. But I did, so much so the next year I messed with his head and played a dangerous game of ‘thanks for the flowers’ when he still hadn’t sent any. He was working overseas. I didn’t get any from anyone, and I was lonely and the ‘rejection’ turned me into a lying bitch, and I got burned! Don’t play games girls, it never works out.
So this year, new ‘relationship’ being totally honest with everything, declared status in a clumsy text, learned some more lessons there, and wore my heart on my sleeve. Cupid’s day came… Nothing. Nada. Then a text encouraging me to race home in case…and then my neighbour knocked. Yes this is it… oh eBay package for my daughter. Thanks! Where’s the Oreos?
Nevermind, I return to choir sessions…Season 2, Lean on Me, Like a Bridge Over Troubled Water, and Love Lifts me Higher, Higher and Higher! Walking through the park the next morning, and still singing in my heart, ‘Your love’s lifting me higher.’ Who needs Hallmark and red roses when you have a melody and crocuses?
When I moved to Chicago a little over two years ago, I chose to disclose my HIV status on a need to know basis. For the first year here, only the director and assistant director of my graduate program and the principal of the school where I’m employed were made aware of my status. I was very intentional in my decision not to disclose. Embarking upon a new opportunity, in a new city, surrounded by new faces, I wanted to be known by the merit of my scholarship, integrity and character. Relocating provided me with an opportunity to define myself by my talents, strengths and abilities alone rather than by the virus flowing through my veins.
As I navigated through my graduate program, I gradually shared my status during conversations with my colleagues, turned friends, on an individual basis. For many of my new friends, I was their first personal encounter with HIV/AIDS, which created teachable moments that I felt responsible to seize. Being that first personal experience someone has of a person living with HIV/AIDS is a great responsibility and is incredibly risky. Ignorance and negative stigma around HIV/AIDS continue to be issues within the global society, criminal justice systems and intimate relationships.
In my experience, the choice to disclose involves a tangled internal conversation that haggles over the pros and cons of disclosure. The fear of potential rejection and isolation always lurks in the back of my mind when I decide how, when and to whom to disclose. This time is no different. For days I have been going around and around with my thoughts about disclosing to a special group of girls. I’ve come to the conclusion that although my fear is valid, my purpose is greater. And my silence serves no one, not even me. For this reason I will be commemorating National Women and Girls HIV/AIDS Awareness Day 2014 sharing knowledge and taking action with the staff and students of the all-girls school where I am employed, and a group of teens and tweens who attend the church I’m seriously considering joining. Openly disclosing my status to both of these groups of young women could potentially be disastrous for me, greatly affecting my comfort level at my job and my desired place of worship. But, if at least one of those young ladies think twice her sexual health because of something I say then it will be worth disturbing my peace.
Movies that can fuel stigma and ignorance/Las películas que pueden alimentar el estigma y la ignorancia
As I sat with my wife, Lisa, and watched Dallas Buyers Club, I was like ‘wow! what wonderful actors!’ They really did a good job! And it was part of history. I lived through most of that in those times when this condition was known as GRID, or a condition for prostitutes or drug users. But nothing touches Philadelphia for me. It was a very deep movie and it touched me deeply! I guess it is a matter of taste, not taking anything away from DBC.
I was thinking that night after we watched the movie and reading one of the many thousands of emails I get from all over the world and from all ages… A girl that is 17 years old living in the USA told me that I inspired her to get tested and she wanted to know if HIV was in fluids as well. My jaw dropped!! And I answered, “Hun, of course it is! This is in fluids…semen, vaginal fluids, blood and breast milk.” This is not the first time I’ve gotten asked these things. Many, many times teens, and even adult,s think that HIV is transmitted through blood only because it lives in the blood. OMG so much lack of education! This made me think…we are in deep shit here!
Not only are these kids not getting proper education about sex, but they also continue to see in movies the same thing…mostly gay men with HIV, drugs and sometimes prostitutes. It doesn’t process to them until they see people like me or anyone that is not in the category of what it is always shown in HOLLYWOOD! I don’t know…this is my impression. HIV happens to all of us, I tell them! They don’t have the information! No one wants to talk about sex in school or at home! They think the most important thing (at least for girls) is not to get pregnant, and they don’t know how real HIV is and that it continues to spread like wildfire! Why can’t I speak about CONDOMS in school?? WHY?? Why can’t I be explicit in telling them exactly how they can get HIV and other STIs or STDs however you want to call them? I am not allowed! Why is there no sex ed in schools anymore? This is devastating!
The people that are being diagnosed refuse to come out of the HIV closet and they are afraid of stigma. They feel shame. Others like me decided to come out and share our stories because we can’t continue to sit back even if we are judged and maybe even discriminated against. Some tell me that they don’t care who they infect and won’t disclose because of fear and that it’s others’ responsibility as well to use a condom!! Ummmm, most people do not have a lot of knowledge about HIV unless you have been infected or affected! They continue to think that they will know if someone is ‘NOT CLEAN’” as they say!
Something must be done about this! All of us have to do our part! The ones like me that are infected have to either come out of the HIV closet for the good of others or at least use protection and take your meds so the risk is minimal. PARENTS! Please talk to your kids about sex! Please…you could be saving their lives! And we must have open discussions about sex in schools! If this happens, I believe that we can make a change and maybe get to zero infections like the whole world wants!
I asked my niece, “Do you know who Ryan White or Magic Johnson is?” She is 13 and they do not know. She just knows her tía (aunt) has HIV and I am educating her! It is sad that almost 30 plus years with HIV and people still think that HIV only affects who we see in the movies! Gay men as I said, prostitutes and drug users like in the movie, GIA. And the other movies that have shown a family or women with HIV have not had much impact on the youth. :( I am glad Dallas Buyers Club put HIV on the map again! But, again it started with a man getting high, being promiscuous and having sex with a drug user…I know that many of us got HIV like that…and that is ok. But the youth seem to think that this is the only way that you will get HIV, and as I said they do not even know if HIV is in fluids??? WTH? Another lady wrote me and told me she thinks she has HIV because she bled during sex. I mean really?? People in the health field have lack of info as well in many aspects, and I will touch on that in the future… For now we must all get together if we want to sop the spread of HIV.
Cuando me senté con mi esposa Lisa para ver El Club Compradores de Dallas (Dallas Buyers Club), yo estaba en shock, qué actores maravillosos. Realmente hicieron un buen trabajo! Y fue parte de la historia. Eso lo viví através de la mayor parte de mi diagnostico en lo que esta enfermedad era conocida como GRID o una condición de prostitutas o drogadictos. Pero, nada toca a Filadelfia para mí Fue una película muy profunda y me tocó profundamente! Supongo que es una cuestión de gustos, no quitándole nada la película BDC.
Estaba pensando esa noche después de que vimos la película y uno de los muchos miles de correos electrónicos que recibo de todo el mundo y de todas las edades… Una chica que tiene 17 años de edad residente en los EE.UU. me dijo que la inspire a hacerse la prueba y ella quería saber si era VIH estaba en los fluidos. COMO??? Me quedé boquiabierta! Y yo le contesté “Amor…por supuesto que lo esta! Esto son los fluidos, la sangre, semen, fluidos vaginales y la leche materna.” Esta no es la primera vez que me escriben estas cosas. Muchas, muchas veces los adolescentes e incluso los adultos piensan que el VIH se transmite a través de sangre solo porque vive en la sangre. OMG tanto la falta de educación! Esto me hizo pensar…estamos en profunda mierda aquí!
No sólo son estos chicos no hay una educación adecuada sobre SEXO…pero, también siguen viendo en las películas la misma cosa! Los hombres gay con VIH, las drogas y tal vez incluso las prostitutas. No procesa en ellos hasta que vean la gente como yo o cualquier persona que no está en la categoría de lo que siempre se muestra en HOLLYWOOD! No sé…esta es mi impresión. El VIH nos pasa a todos nosotros! Ellos no tienen la información! Nadie quiere hablar sobre el sexo en la escuela o en casa! Ellos piensan que lo más importante (al menos para las niñas) es no quedar embarazada y ellos no saben qué tan real es el VIH y que continúa las infecciones como reguero de pólvora! ¿Por qué no puedo yo hablar acerca de los condones en la escuela? ¿POR QUÉ? ¿Por qué no puedo ser explícita y decir exactamente cómo se puede contraer el VIH y otras infecciones de transmisión sexual o ETS cómo quieran llamarlos? No se me permite! ¿Por qué no se educación sexual en las escuelas más? Esto esta muy mal!
Las personas que están siendo diagnosticados se niegan salir del closet del VIH y tienen miedo del estigma y sienten vergüenza. Otros como yo decidimos salir y compartir nuestras historias, porque no podemos seguir sentados, incluso si se nos juzga y tal vez incluso discriminados. Algunos me dicen que no les importa que se infectan los de mas y por miedo no dicen que tienen VIH antes de tener sexo y que es la responsabilidad de cada quien! La mayoría de la gente no tiene una gran cantidad de conocimiento sobre el VIH a menos que haya sido infectado o afectado! Siguen pensando que van a saber si alguien “No es limpio”, como dicen!
Hay que hacer algo al respecto! Todos nosotros tenemos que hacer nuestra parte! Los que, como yo, que están infectados que salimos del closet del VIH para el bien de los demás, o al menos usen protección y tomen sus medicamentos para que el riesgo sea mínimo. PADRES! Por favor hablen con sus hijos sobre el sexo! Por favor…usted podría salvarles la vida a sus hijos! Y debemos tener discusiones abiertas sobre sexo en las escuelas! Si esto sucede, podemos hacer un cambio y quizás llegar a cero infecciones, como todo el mundo quiere!
Le pregunté a mi sobrina “¿Sabes quién es Ryan White, el niño que tenia VIH por medio de una transfusión de sangre en los 80s y que era muy visible y un héroe o Magic Johnson el jugador de Basketball?” Ella tiene 13 años y no sabia. Ella sólo conoce a su tía y que ella tiene el VIH y la estoy educando! Es triste que casi 30 años y pico con el VIH y la gente todavía piensa que el VIH afecta a quien vemos en las películas! Los hombres gay como dije, las prostitutas y los usuarios de drogas como GIA (la modelo famosa que murió). Y las otras películas que han mostrado una familia o las mujeres con el VIH no han tenido impacto en la juventud. Me alegro de Club de Compradores de Dallas y que puso el VIH en el mapa otra vez! Pero, de nuevo empieza la pelicula con un hombre promiscuo teniendo relaciones sexuales y muestra el uso fuerte de drogas. Sé que muchos de nosotros cojimos el VIH así…y eso esta bien. Pero los jóvenes parecen pensar que esta es la única manera que cojeran el VIH y como ya he dicho que no saben si el VIH se encuentra en los fluidos??? WTH? Otra señora me escribió y me dijo que ella tiene VIH porque ella sangro durante el sexo. Que falta de información! Quiero decir también que las personas en los campos de la salud tienen mucha falta de información, así en muchos aspectos tocare esto en el futuro… Por ahora todos debemos juntarnos si queremos erradicar la propagación del VIH.
Love and light/Mucho amor y la luz,
Maria T Mejia
Please join us on Monday, March 10, 2014 at 10:00 am ET for the webinar, “The Well Project: An Online Global Community of Support and Information for Women Living with HIV” on National Women and Girls HIV/AIDS Awareness Day!
You spoke, we listened! Over the past several years, we have asked our users how we can improve The Well Project. On our new website, you will find many of the suggestions you have made, come to life. In addition to accessing accurate and easy-to-understand information about women and HIV, find out how you or your organization can utilize the tools of the new website and join our global hub for women and HIV. What’s new?
- A fresh look, more graphics, and a cleaner structure to help you better navigate and easily access more than 150 fact sheets related to women and HIV
- Several new features that enhance social connectivity and broaden our online support community including forums and instant chat
- Tools that provide you or your organization with a web platform to disseminate news, events, and information about your work to a larger audience-especially useful for smaller organizations with little or no web presence!
- Create or join groups (public or private) focused on specific topics, languages, or geographic locations (similar to Google or Yahoo groups)
You will also have the chance to chat with some of The Well Project team, A Girl Like Me bloggers and Community Board Members.
On March 10th, participants can access the webinar either online (http://www.anymeeting.com/272-508-166) or via phone (213-416-1560, access code 1044335).
New year, and already I’m a month behind! Haven’t been to choir practice, didn’t make any resolutions and now, January, my daughter’s 16th and my birthday have passed, and I’m 47 yet still trying to grow up and find my place.
I started an e-course following Brene Brown, ‘the gifts of imperfection’, recommended by a good friend who suggested it would help me, as you can read, I struggle with negative self talk! What hit me initially was the quote ‘In the absence of love and belonging there is suffering.’ I get the need for love, but I’m still processing this belonging business. It has awoken a realization that I have never truly felt I have belonged and highlighted how much I hustle to fit in.
I know part of writing to/for A Girl Like Me was to ‘belong’, to feel less isolated, but I’m kind of confused as to where I sit within the HIV community? I am now officially a long term non progressor. I’m not always undetectable but consistently below 1,500 VL and steady CD4. I belong in the elite 5 % of natural suppressors! However ‘elitist’ is not a word that I feel comfortable with, I want to be with the crowd, and when PLWHIV react ‘wow that’s great’ it’s difficult for me to revel in it. I am working on it, embracing my uniqueness, I’m climbing the mountain and closer to the top, but still running for the caves.
2 years ago I demanded a second opinion as my specialist refused my request for ARV’s, I was convinced it was a funding issue and that my immune system was in danger of being inflamed. I had just completed training as a peer mentor for Positively UK, and learnt how ‘unusual’ I was. My reaction was I wanted to be the same, have the side effects, so I could join in the discussions about diarrhoea and adherence! Crazy, huh! Or just wanting to belong? My viral load increased as I thought/learnt more about how it would ‘inevitably’ after 12 years, that was the statistics. Then I did my own calculations, my own chart, and started to see how, when I could visualise the virus more healthily, I was healthier and that I could use the power of my mind, not to create a whirlpool to drown in destructive thoughts, but to heal myself.
I do this with meditation, I take time be mindful and have done so for 8 years. I know it helps, not just with HIV, but life, and self awareness, even if it is a slap of non belonging/suffering. I imagine sending light to my T helper cells as a daily practice, and when I read how the Berlin patient was cured I also started to send light to my bone marrow and stem cells! The latest research I read in December about pyroptosis got me very excited, but then extended my separateness’ as it seemed nobody on the HIV online forums was equally thrilled. I get that the words ‘a molecular mechanism that causes the death of most CD4 T cells, so that even if they have resisted infection by HIV they still suicide’ may not sound like sweet poetry. But to me it was self affirming music that sending light and love to my t cells was helping to stop the sacrifice, and that’s why it works.
So my February resolutions…continue with the e-course, go to choir practise, meditate, write to AGLM, and realise that where I truly belong is where I am, in the here and now, allowing my light to shine from within.
This is me in one of the worst times of my life…a lost girl around 15 years old, a gang member, a thug! I hated myself! There are really no pics of my past. I am not a single particle of that girl anymore…she suffered! She was in pain! She would hide her body and her face…she felt ugly and worthless!!! She believed what she was told…SHE WAS A NOTHING AND NEVER WOULD AMOUNT TO ANYTHING! She was just lost and hurting, and that hard image was just an armor so no one would hurt her or get close to her. This was me, Maria Teresa Mejia. I was a little worm that became a butterfly and now I am flying high. Love and light
Esta era yo en uno de los peores momentos de mi vida…una niña perdida..tenia alrededor de 15 años, pandillera, una delinquente! Me odiaba a mí misma! No hay fotos de esa epoca!! No soy ni una partícula delo que fue esa chica…Ella sufrió! Ella estaba con dolor! Escondía su cuerpo y su rostro… se sentía fea y sin valor! Ella creyó lo que le dijeron…ELLA ERA UNA NADA Y NUNCA llegaría a nada! Ella sólo se había perdido yestaba herida, y esa imagen dura sólo era una armadura para que nadie le hiciera mas daño o se acercara a ella. Este era yo, Maria Teresa Mejia. Yo era un pequeño gusano que se convirtió en una mariposa y ahora estoy volando alto. Amor y luz