New blog post from Tiffany in “Voices From Our Allies”: The Forgotten…
Many years ago my college roommate, Tawana Washington, wrote this hauntingly brilliant poem called “Fits the Description.” The poem spoke about the negative portrayals and criminalization of Black men within the American psyche. You know the descriptions she spoke of, the generic ones: “black male, medium build” that so astutely allow you to identify the “suspect.” After all, Black men only make up what… 6% of the American population, surely I know the Black man they mean. ALL OF THEM! I knew at the time that the piece was brilliant but I naively thought that such descriptors would have no place in my HIV work 15 years later.
Yet they do. Last week while being interviewed, I talked about the role of Black women in the HIV epidemic primarily from a purely American viewpoint and how it appears that we are often pawns in the search for a cure, prevention, or better treatment options. I say pawns because it never feels like the interest of Black women in HIV is relevant to the larger community unless it benefits them (the “them” not being Black women of course). If you want to have the face of HIV then let’s cart out a Black woman, who may unwittingly play into the racial dogma of Black men as predators. After all the only time Black men and HIV are spoken about is if we are looking at Black MSM populations or the highly popularized villain the Black heterosexual male on the DL. Or of course the Black man in jail who comes home to bring HIV to his female partner. Let’s not forget he is this hyper sexualized babymaking machine not unlike the Buck in the field.
So when I was asked about my interactions with Black heterosexual men and HIV, it wasn’t a simple answer. But I must say I find it much easier to talk about HIV with Black heterosexual men because point blank they are rarely, if ever, included in the discussion about risk or prevention. Therefore when it comes up there seems to be the willingness and excitement to be involved in the discourse. If Black women are pawns, Black heterosexual men are plain FORGOTTEN! And if we in the HIV/AIDS activist community are serious about preventing HIV, we cannot simply neglect an entire segment of population even if we fell for the okie doke of descriptions regarding Black men.
My absence…
Well I’ve been away for awhile. However, I’m excited to return!
I had a family crisis which consumed all of my spare time. I fell behind in work life, home life and personal life. Now that the problem is resolved I have had to play catch up for awhile to get back into the swing of things. I’m happy to put that chapter behind me and enter this new chapter.
Life is very unpredictable. Just as you begin to say, “Hey, it’s going to be okay” life gives you something else to overcome and it seems that you are right back to where you started, or even further behind. The only positive thing I can say from these experiences is that you learn something each and every time. I can honestly say that I have learned a great deal from my many challenges. It is because of the challenges that I am who I am today…a smarter, more intelligent woman with even more to share and give.
Oh Baby!
Today I step into my third and final semester of pregnancy. Each time my baby kicks me it brings me immense joy and closer to understanding what it meant when all you sisters mentioned the joy and lease of life that you got when you saw your children. I am so looking forward to motherhood.
My medicines began with my second trimester. Health has been a little unpredictable – initially I use to throw up a lot, my appetite decreased and on and off there were fevers, severe headaches, weight loss and other ailments. Most people who didn’t know the truth would say “You are having a difficult pregnancy..” and I would agree, only I knew there was more than just that. With the excitement was a lot of nervousness and anxiety. I just prayed everyday my baby is safe inside.
Then last week I visited my practitioner. My viral load had gone down to undetectable and the happiness of that moment made me forget all the discomfort I was going through. Eagerly waiting for these couple of months to pass soon and praying every day.
Your’s Sincerely,
Sonia
(But even sometimes my spirit has a limit!!)
Sometimes I feel like I can’t continue. I feel that the energy gets low. This is normal to me…it has always been like this. Ever since I was a teen I had this fear that I had to live every moment to the extreme. This is a good thing, but it can be a bad thing also for people living with HIV or any disease—and even for someone that is healthy.
I think what happens to me is that I live on a constant roller coaster. Ever since I changed my eating habits and practice forgiveness– trying to be in the light and send light to others that may not have love for me–it’s getting better. But as many of us know, we have good days and not so good days…and sometimes I suffer from fatigue and I HATE HATE HATE to feel fatigued!!! Just being there doing nothing…I know I am a very hyperactive person and I am a high energy person. Even if I am laying down trying to relax or even meditating, my mind always tries to roam somewhere on the things I have to do. So basically when my body shuts down, I push it with my spirit! I refuse to let my body control my spirit, but I am learning that I have to balance everything and not go from one extreme to another!
It’s ok if we don’t get to do everything we planned to do today…there is always tomorrow.
It’s ok to just be lazy and not do anything. It’s ok to say NO to others when you don’t have anything to even give yourself! Because in the end, if you get sick or overwhelmed, you won’t be able to give ANYTHING to anyone…including yourself.
I am learning to try and not stress on the future…the what if’s…the future is not promised! Our past is gone, so I want to live for today! But here is where it gets tricky for me: LIVE TODAY TO THE FULLEST, BUT NOT WITH THE ANXIETY THAT THERE WON’T BE A TOMORROW. So yes, my spirit is strong as hell! Yes, I am a strong woman! But even the strong fall.
I don’t want to fall. I want to continue on living healthy and having that perfect balance. So even though many years have passed living with this virus, I am still in cycles with it…or maybe I am just getting older and wiser…I don’t know.
I just know that every time I get up and feel 100% healthy, I try to do it all…live it all, but then the time comes when my body says: Maria, slow down or I will make you slow down! So what does my stubborn self do? Push myself to the limit..that is why I know that my spirit is stronger than my body and mind!
I believe that is why when I am emotionally sad or I feel my spirit weak is when I have felt the sickest and this is like a vicious cycle. I hate to feel sick, but I make myself sick taking my body to the limit. So then I find myself laying in bed, not feeling well..thinking too much! And BAM! My spirit stumbles. So I can’t do this to myself anymore!!!
I need to step back and relax and breathe…really enjoy life and the days I am feeling 100%. Sometimes I also think that I do this to myself because I feel that I want to take advantage of feeling strong. I dont know…
I also have to accept that I am HUMAN…and that we don’t feel 100% all the time! HIV negative people get sick also. They get low on energy also! I have to stop being so hard on myself and my body…even if my spirit always pulls me through.
I have sat and thought–and even friends that observe me have noticed–that I don’t rest how I should. I think I am resting…but am I? Really, let’s think about it…do we really rest our bodies and mind?
Maybe this is one of the reasons that I have been undetectable for more than 11 years and my T-cells never go up more than 399..never ever! Even though I don’t get sick or hospitalized (thank God), this is causing a form of stress in me that I have learned to live with all my life!
So this woman will try and chill and relax. I hope if someone can relate to this, you will also do the same.
There is always tomorrow. Enjoy today, but with measure…hold your loved ones…take time to walk, to watch your favorite show, to share with your family…just put yourself first! There is always tomorrow! And if tomorrow never comes, at least you will leave this life knowing you gave your best and lived the best you could without pushing yourself.
So yes, my SPIRIT pulls me through, and I am thankful for this! But I want spirit, mind, body and soul in harmony as one.
Love and Light,
Maria T Mejia
ACT UP
WE NEED TO HAVE THE PASSION AS ACTIVISTS AND ADVOCATES THAT THOSE IN THE BEGINNING OF ACT UP DAYS DID!
ACT UP = ACTION AND PEOPLE FIGHTING FOR OUR RIGHTS TOGETHER AS ONE!
I want to start my blog talking about the story behind it for those that don’t know what it is (from ACT UP’s Wikipedia page):
AIDS Coalition to Unleash Power (ACT UP) is an international direct action advocacy group working to impact the lives of people with AIDS (PWAs) and the AIDS pandemic to bring about legislation, medical research and treatment and policies to ultimately bring an end to the disease by mitigating loss of health and lives. ACT UP was effectively formed in March 1987 at the Lesbian and Gay Community Services Center in New York. Larry Kramer was asked to speak as part of a rotating speaker series, and his well-attended speech focused on action to fight AIDS. Kramer spoke out against the Gay Men’s Health Crisis (GMHC), which he perceived as politically impotent. Kramer had co-founded the GMHC but had resigned from its board of directors in 1983. According to Douglas Crimp, Kramer posed a question to the audience: “Do we want to start a new organization devoted to political action?” The answer was “a resounding yes.” Approximately 300 people met two days later to form ACT UP.
I am one of those who believe that we have to go back to basics, and back to the Larry Kramer times and throw ourselves to the streets and fight for our rights … rights that are being taken little by little from us! So many new infections and not enough funding! So much we want to do … but people are not dying as in the times when ACT UP started … this is a good thing that we have new medications that are making us live longer. But this DOES NOT MEAN we have to just live, be silent and take our medicine and let others do the work for us! HIV/AIDS is still killing people all over the world.
Why are people getting infected every 9-1/2 minutes just here in the U.S. alone? Why are people not respecting the virus? Why if we have the knowledge do we continue to put ourselves at risk? WHEN WE KNOW BETTER, WE DO BETTER!
I know many of the answers that people tell me — like HIV is not a death sentence anymore, there is medication and we can live long and productive lives! But AIDS IS A BITCH! And you have to live it to know it!
I always see the same people in the conferences and events here in South Florida where I am from. Where is everyone else that is infected? They are hiding because stigma and discrimination after 30 years still exist everywhere! This is a reality, but if we want a change the change starts with the man in the mirror! I know in the Larry Kramer times things were different and a direct threat was happening … people were dropping like flies and people were dying over and over. So many of my friends are gone in these 23 years of me being infected with the virus.
In 1989 when I was infected, I was 16 and I didn’t even know who Larry Kramer was. I was diagnosed in 1991, when Ryan White passed. This was someone that I saw on TV and saw as a great activist and a great inspiration that fought for our rights! I learned about ACT UP and Larry Kramer later on in my years living with the virus.
HIV activists are different now in the aspect that we have more resources like media. I myself use it all over the world to get my message across. The story never changes and I believe (for me) telling our testimonies and showing our different faces is the most effective way to change the stereotypes of people living with HIV/AIDS. We are no longer the people that were shown in the 1980s dying and looking very thin. I will always be grateful to people like Larry Kramer that fought for our rights and paved the way for us newer activists. They didn’t have the Internet. They didn’t have the information that is available now. All they knew is that something had to be done and people in their community were dying of GRID!
I also noticed they were very united and they didn’t give a damn to say what they felt. The newer activists have to have that passion inside of us to fight for our RIGHTS! Every day I hear of another ASO being cut off. Why are we sitting back and letting things like this happen? Are we going to permit ACT UP and other activists to have worked so much in vain? Do we have to actually see people dying and dropping like flies to do something? I know many are in denial, feel shame, have fear and they just are dealing with life or protecting their families; so the ones that are available to do something must get together and FIGHT! FIGHT FIGHT! and never tear each other down.
The reality is you have to have a deep passion to be an activist, and you can get burned out! There is no money in this passion. No one wants to be a poster child for HIV/AIDS (at least I don’t)! Please let’s be one and follow the example of ACT UP before things get worse.
Thirty years and I feel the candle is burning out slowly! Why? Do we think nothing’s going to happen to us … and if it doesn’t, who cares what happens to others?
Are we in denial of what is happening? I know many fierce activists all over the world! But we can’t do it alone … we have to leave all our differences aside if that is the problem and fight for our fellow man! If we don’t do it, no one will do it for us! Believe that!
So yes many things have changed in HIV activism … but the story is the same! We are human beings that need to make that change… and become one force. Only then we will be able to be listened to with respect and authority. I have hope that this will happen … I see no other way.
UNITED WE STAND, DIVIDED WE FALL: real talk.
As always …
Love and Light,
Maria T. Mejia
Sisters
A lot has happened since the year started. I got new friends or should I say sisters. When my fiance proposed they were the 1st people I told, coz I knew they would celebrate with me. Even if we are miles apart it sometimes feel like we live together. What’s gonna make my wedding special is the fact that they will be there, they r even making sure I don’t wear a hideous dress by offering to go with me for fittings. It means a lot to me to have their support.
I’ve been struggling to put on weight and have a healthy BMI, but with their help I gained 5kg and my BMI is 20.
What I love most about this group of women is their sense of humour, their ability to turn mountains into mole hills and the fact that we can talk for hours without mentioning HIV.
These people are my rock, my Divas, my guardian angels.
I know they are reading this, from the bottom of my heart I wanna say Ndiyabulela.
If you are in South Africa or Botswana and want to be part of us, feel free to comment and we’ll take it from there.
It’s Amazing to Me
- It’s amazing to me that I am still here after all these years of being HIV+ when in the beginning of HIV/AIDS coming out it was considered a death sentence.
- It’s amazing to me that as I sit and fill out and plan for my son’s graduation party, that when I was pregnant with him, there were doctors that told me I wouldn’t live to see him graduate high school.
- It’s amazing to me that after finding out that I am HIV+ and how I became infected, I still have friends and family that have unprotected sex with people that have never been tested. The mentality is still there that “It won’t happen to me”.
- It’s amazing to me that I am the only person my friends know, that is HIV+ , when there are so many folks out there that are infected. Really makes me think about all the folks that are infected and don’t know it or don’t want to find out.
- It’s amazing to me that people look at me when they first find out about me being HIV+ and say and think things like, “So that’s why she is so skinny”. Everyone in my family is skinny. I weigh 105 lbs. I want to say to them, “No that’s not why and what is your reason for being fat”. Can you feel the frustration coming out in me today? lol I am a very loving person and would never say such a thing but it really makes me mad that the perception of being HIV+ is so crazy.
- It’s amazing to me that after all the information that is provided out there on HIV/AIDS that people still don’t want to learn or listen to people like me and become educated to not only protect themselves but to also not be afraid to hug me or eat after me.
- It’s amazing to me that there are still people out there that think HIV is a gay disease. Hello people–I’m straight–AND I didn’t have anal sex to get it!!!!
- It’s amazing to me that after all of these years of being infected that it’s only been in the last couple of years that my health has been an issue. I wonder sometimes why God let me be stupid and have sex with the “wrong” guy but then again I feel that God has taken the bad and turned it to good because I now can help others to stop and think. When you do not have your health you have nothing. I know my blog seems a little crazy but I thought I would share my thoughts.
Doc told me he thinks not only do I have HIV arthritis but also HIV neuropathy in my entire body. I hurt everyday but taking Lyrica has made suuuuchhhhh a big difference. I feel I can function and be a Mom and wife. I also take Hydrocodone to help with my body pain and my neck, I have a bulging disc and pinched nerve in my neck. But today has been really rough as my neck is hurting really bad and going down my back and the pain med is not kicking the pain. HIV and pain are in my face everyday now but I have to stay strong and not let my children see me in pain.
I want so badly to be able to work but I never know from day to day how I am going to feel. I want to be “somebody” and help others. I pray something in this blog will help someone somewhere. I am such a people person and love to laugh and be goofy. When I meet some people after talking with them for just a little while and they find out I am HIV+ the shock on their face is priceless. I guess people think I should be sickly looking or something. I am very open with my status but I don’t tell everyone I meet of course because I have had bad experiences. And that to me is amazing because it shows just how uneducated people STILL are about this disease and how it is spread. It’s not just a gay disease anymore, it’s a people disease.
I hope all of you AMAZING women are doing wonderful!!!
da sassi diva – Intro
The Journey
Well I don’t even know how to start. I have always thought I would be one of the last people who would contract the illness. I mean, I’m from the urban areas, went to multi-racial school and quite educated if I should say so myself, even though I’m not from a well-to-do family. My mother was able to provide for me and my two siblings. I waited till I was 19 before having sex, prior to being raped at 18. Even after that horrible experience, I picked myself up, learnt from it and grew stronger–even managed to get myself at university. I knew the consequences of having unprotected sex but I was ignorant. I will never blame anyone for being infected as it was also my duty to insist on condom use every time. Being an open person that I am I did not hesitate telling my family and friends…that has helped me a lot as I have received so much love and support. Basically the journey starts now and so much better is yet to come!
More about da sassi diva: I was born in Swaziland, raised in the Free-state and bred in Johannesburg. I’m 21 years old and currently residing in Cape Town as I’m pursuing higher education in Cape Peninsula University of Technology, doing my 2nd year in the applied sciences faculty. I was diagnosed with HIV in June 2011 during a routine check up. I was infected by my very first boyfriend who cheated on me while I was here in Cape Town. He stays in Johannesburg and unfortunately we broke up as a result of his infidelity. I don’t hold any grudges against him. My family fully supports me, especially my mother whom I am eternally grateful for having. She is the reason why I push myself beyond my set limits. I know I have a long way to go but for some odd reason the future looks very bright thanks to the advanced treatments, understanding and healthy diet in conjunction with exercise.
Why da sassi diva wants to be a part of A Girl Like Me: My main reason is that I want to eradicate the mentality that university students do not get infected and also show South Africa that they are still people living with this illness…despite them making notions that once infected the result is death even though there’s medicine and change of lifestyle.
From COWARDICE to COURAGE
Two days after a self attempted suicide I woke up to bright sunlight streaming down my face. Ooooh what beautiful weather. What a beautiful day. Throwing the mink blanket aside I tried to get up from the bed when dizziness suddenly enveloped me and the staggering pain hit my arm. I notice that thou the swelling had subsided, it had a dark bluish blackish reddish colour combination of bruisemark left behind by IV (intravenous) syringe .
My eyes welled up in tears. I had wanted to die, but was saved. I was living alone, independently, juggling between my personal and professional life and top of that, my health condition, the side effect of the drugs that takes toll on my system at times. I was Anemic, suffering from low Haemoglobin and have frequent dizzy spells which interferes with my day to day lifestyle. Being alone too was also the biggest issue as I had no one to cook me breakfast/lunch/dinner when I wasn’t well, no one to talk to when I was down, to share my happiness and my sorrows, success and my failures, no one with whom I can enjoy my yet “another” day. In short, I had no one to live for that was “worth” my living. My marriage was broken in 2008, my parents /relatives long abandoned me, my boyfriend is no longer my boyfriend but my best friend, have lot of friends but no one to talk to regarding my problems that I could trust enough to share, and top of it all, I was undergoing tough situation in personal front and office pressures building on the other side. By the looks at it, I was already having anxiety attacks from various angles, depression was setting in which was eating me up emotionally, making me mad day by day. The more I with-held, the worse I grew. And then finally one day I couldn’t take it! I texted to few people who mattered, and consumed phenyl, a kind of a liquid poison. I had considered myself a “survivor”, a “struggler” but in fact I had become a “loser”. I have always wanted to be loved. ALWAYS. I lacked love ever since I was born. I never knew what a mother’s love is like, never felt my dad’s love as long as I lived with him for 18 years, with male friends it was more of “lust” than love (and I was too naïve that time to even know the difference between it) and the only love that I shared when I got married was also short-lived. Now that the virus has claimed my body, I lost 2 more important people in my life. My best friend and my boyfriend. My best friend (Mr. A) dumped me for telling him upfront regarding my status, and my boyfriend (Mr. B) broke the relationship but stood by me as my best friend when he came to know that I lied to him about me having cancer instead of HIV. Everyone needs love, especially when they do not or at least deserve it. Who understands this better than the one who has never been loved or who has been loved just for a while and later shunned for no fault of theirs? There is so much hunger for love in this world than for anything else, more than money or even happiness. I tried breeding hatred for others in my heart but instead I was developing a hatred within me, inside me for myself, for being born, for what I am. And the reason of my hatred was many : From not being a good daughter, sister, friend, wife and mother to finally being HIV Positive!! Thou I had sympathy, empathy, pity, love, care and concern for others and would go out of my way for them if needed be, the only thing I had no feeling was for myself. I was only degrading myself, killing myself, blaming myself for whatever was happening or had happened in my life. This is how it felt “being alone”. “Being lonely”.
After being discharged from the hospital, my best friend (Mr. B) gave me a good lecture. He was upset of my cowardly act which I regretted later and know was not the right thing to do. I tried telling him that I didn’t mean to do it but at times when things drive me to despair, when I was crying for help but no one understood me, even the “mighty” ones at such situations DO fail. There are times when something snaps within that had been withheld too long. But he would hear nothing of it. Instead, I had to listen to him, too ashamed to say more, ashamed coz I lost my respect in front of his eyes coz of my cowardly act and he had lost his trust in me. He thought of me to be strong but then my committing a suicide was showing a different picture. “Admit it, Jyoti, that u are too weak, too insecure, and I will respect that”, he said.
But I did not admit. Rather, I didn’t say anything at all.
Though he did admonish me, I could sense his love, care and concern in his voice. And I realised I was “expecting” too much from people. And then that’s when a real “courage” was born. “Fearless” became the “word” and my dream project was being incubated. I told him, “From henceforth, I will not say anything about my HIV thingie, about my blogs, about how I went on to light other people’s life. From now on, let my action speak to u more than my words. From now on, YOU will hear about me rather than me telling you”.
This incident made me “feel” what we, the HIV Survivors could feel. It made me feel that we failed to be understood by people not infected by the virus. They don’t understand that thou we do look healthy outside, we were battling many demons inside. My suicide took me closer to the psychological mind of the infected. It made me feel how they “feel”, how they are “affected” and how even a mere harsh words can shatter their heart or a toughest problem can drive them to utter despair. How they yearn for love, for being wanted, to be accepted. It made me want to be with them. That I will be there for them. That I will be their ear, that I will be their heart, that I will be their shoulder to cry on, that I will be their pillar of emotional support. That I will be everything they want me to be : A daughter, sister, friend, mother. Leaving the “wife” part which I can be for just one
.
Thus the result of my action? On 21st April, I have a meeting with someone who will be my partner in opening up a foundation for HIV infected people. After my lunch meeting with him, we will be roping in media for publicity coverage to highligh the plight of HIV people in India and also looking up at some organisation who would sponsor/fund our project, who would bring some love, some cheer in their lives. A guy whom I am partnering with told me that I am playing a dangerous game, that I am risking my life and that it will be a gross violation of my human rights should I go public, show my face when India is still in the stage of inception, but I hardly care. I told him that I am doing it more for THEM than for MYSELF. And also, ( I told myself secretly ) I am doing it more to bring my lost respect and trust back in my best friend’s (Mr. B) eyes, my ex-bf whom I loved and still love. He planted that seed in my distraught mind and I am going to make it into a fragrant blooming flower capturing many hearts and winning million’s love just to light up the life of the infected population in India and make their day! My budding dream is already on its way to becoming a reality.
(I know now that suicide is not, and never will be, the answer. It was a big mistake. There are resources for people who were feeling down like me, and people who can help.)
Challenges…
There isn’t a single person in the world that hasn’t Had to struggle with something or overcome Difficulties at some point in life. We all face Challenges and adversity.
At this very moment you may be facing one, whether They’re related to money, health , children, family Or careers. It is all part of being alive.
Recognize that obstacles are just part of your Journey. Don’t let them stop you and never give up.
Instead, think of them as milestones that once Passed will bring you closer to your goals.
Remember that with every challenge passed, you are a Little stronger, a little wiser and more prepared for The rest of your journey.
Update
I know it has been so very long since I have updated everyone. Where should I start. I am almost finished with my first year in nursing school, that is the reason I have been MIA. That is where I am going to start…
Nursing School:
I was in class the other day and my instructor was talking about the working in the AIDS ward at our local hospital. I was shocked how long she has been out of practice. There hasn’t been an AIDS ward in years. One of my fellow classmates asked me, “Where do they put them now there isn’t a ward for them.” I looked at her with disbelief. I asked her… where do they put everyone else? I thought this would be a great opportunity to educate her, and I did. I am still surprised, and I shouldn’t be, to the ignorance of people when it comes to HIV and AIDS. I hope I made it a little clearer for her.
Family:
I am going to be a grandmother in June…. CRAZY!!! I became a great-aunt yesterday. I am very blessed! I never thought I would live to see the day that my children Graduate from High School much less having children… I have a feeling I will be around to see my grand-daughter graduate too.
Health:
I have been to the doctor for regular check-ups, nothing new to report. I do feel there could be more resources for women. They kind of bunch all of the women support groups with, people with terminal illnesses… I don’t feel I am terminal… I just feel this is something I have to deal with… Like someone living with Diabetes…
I read all of your updates and you all inspire me every day!!
Jae