February 26, 2016
Where do I start? It is with much sorrow that I am writing this blog ... the memories of my friends that passed from AIDS complications haunt me all the time. It is very hard to express how I feel ... so I will do my best.
I know I am not alone in these feelings, but us long-term survivors have survived something that was supposed to kill us, we are left with long-term fatigue from our meds that save our lives. The PTSD that we have mentally endured from so many years of hiding in shame, feeling worthless, having the fear of dying like the many brothers and sisters I have seen die in front of me.
This is a blog that I want to dedicate to all of us that have been living with HIV/AIDS when it was a death sentence and death was something we were dealing with constantly!! You see, this newer generation never lived that. They can only see documentaries of how we had to fight for our medications, how a little boy Ryan White was ostracized because he got HIV from a blood transfusion and the only thing he wanted to do was go to school. The sadness I felt knowing if they were doing this to a child, what would I expect as a teenager living with this death sentence over my head?! This generation is lucky they have all the resources, support groups, a list of medicines to chose from, more information, education, etc. They have not been the guinea pigs that many of us LTS (long-term survivors) have been. It is not us against them, but they have to understand that only if you lived it will you ever understand it! The horror of knowing your friends were dying almost every week!! For some, almost everyday! Having funeral homes not wanting to touch us and throwing us away like trash in big black garbage bags! Having to fight and fight ... knowing that we had not a lot of options!
I myself went back to my country, Colombia, to DIE! I gave myself 10 years ... because in those times, 10 years was the max that you would live. So I gave myself fun till I was 28 and I wrote it in a diary. I had to live 10 years a lie and deal with this isolated from the world and by myself. Even my own family didn't know I had HIV because my mother and I decided that I couldn't tell a soul ... especially in Colombia where we are ruled by the Catholic church and there is so much ignorance. Just imagine a teen that was told in the most uncompassionate way that SHE HAD AIDS.
I remember going to some HIV specialist in Colombia. I remember him saying to me ... "Maria, you have to take Bactrim for the rest of your life!!!" In my young mind that was a little educated in medicine, I responded: "I don't think I should do that ... because I may become resistant ... and the day I might need it, it won't work." He looked at me with eyes of anger and basically told me YOU ARE GOING TO DIE ANYWAYS!! WHO CARES? This hurt me deeply. I just cried and my mother told him off! He has passed. You should never tell any patient that they are going to die anyway!! Even if we are, we need compassion and empathy! This is why I speak to medical providers all over the USA.
After that I went into denial. But I knew what I had so I basically fell into the claws of scammers and Quacks that promised to cure me. I was so desperate I took everything that they told me to, even my own urine for three months! It was supposed to be a therapy from Japan called "Urine therapy." We didn't even have medications yet. And then came the high dosages of AZT. Yeah, I tried it. I lasted one month!! And why?? Well, because I felt like I was dying!!! I felt my veins burning and my head like a balloon. It was so, so toxic that it made my mouth taste like metal I know it saved many ... but for me ... my little body just couldn't tolerate it and I would rather die than to take that again. This was my choice as a teen!
Seeing my mother worried was horrible for me as well ... remember we had no information at all!! I would get sick with a cold and I was always thinking ... "Is it time now? I am dying." It was horrific to live this way and to have to act like everything was all right. I felt sick so many times and I was always tortured by the images and people that I started to see DIE ... friend after friend. I always compare my T-cells till this day ... and when someone passed from complications of AIDS, I ask, "What was their T-cell count?" And many of the times they had more than me! You see, after refusal of medications for 10 years I was dying with 39 T-cells and cancer in my uterus. This is when I decided to come back to the USA to fight to stay alive.
I can't describe what I have been through in these 27 years (well, I got infected in '89 but diagnosed in '91 at the age of 18). I am actually still going through it! Yes we have less people dying ... but MY FRIENDS ARE STILL DYING FREQUENTLY OF COMPLICATIONS OF AIDS AND I AM SCARED!! I am scared because they are LONG-TERM SURVIVORS like myself!! They have fought and fought just like me to keep themselves alive but their bodies just couldn't take it anymore. I have a friend right now that I don't even want to mention because losing him would really make me very sad and depressed! He is very sick with pneumonia!! He has had 4 I believe in the last couple of years and has been fighting for his life. He is a real long-term survivor and someone I hold deep in my heart! We are both activists and he is an Aries like me! A WARRIOR! I have a feeling he might not make it ... and this is the same fucking shit we have been dealing with for more than 30 years!!! WE ARE FUCKING TRAUMATIZED and we need help!! We have PTSD, Depression, Anxiety and SURVIVORS GUILT! Why am I still here and my friends are gone!? Not a few THOUSANDS!!! MILLIONS!!!! We need a special program or space for us long-term survivors! We are not of the generation ... take a pill and you will be fine! We are of a generation where we had nothing but each other. I think our medical providers should give special care specifically for long-term survivors and the after effect that we've had! I feel like we are soldiers coming back from a HORRIBLE WAR and we are still battling it ... it doesn't get easier!
Aging with HIV is a bitch!! We are dealing with much mental illness and physical problems (most of us). This is why I tell every young person that I educate ... well, young or old ... "HIV/AIDS is not a death sentence anymore, but it is a life sentence. We get no breaks!" Some say, "Hey Maria, cancer is worse." I respond, "Yes!! BUT most of the people that I know that are ill have cancer and HIV, or they are cancer survivors like myself!" Yes, we have better meds and this is true. But we come with an accumulation of thousandssssssssssssss of pills in our bodies! This here is a bitch and I do not wish it on my worst enemy!
Many feel, "Well, heck. I feel well most of the time." Or maybe I tell myself that ... because not feeling well is my NORM! No I don't feel well every day! Most of the time I am taking something to help push me!! And my spirit is strong as hell! Even when my body says NO..I say YES!
I push myself because I feel I need to live intensely, and to tell you the truth, I don't know if I will make it past 50 ... My wife says, "You will grow old with me!" I HOPE!! Hope is what I have always had! This is why I am here and alive! And I understand that there is a teaching in all of this! I will continue to live the best way I can ... MY WAY! I will continue to advocate for those that can't. As I always have done, I will continue to live life to the fullest ... and to understand that no matter what, I lived the best way I could ... with what I had.
You see ... the mental anguish is still there! Is the time close? Are my labs good? Am I resistant? Are my CD4s down again? Is my VL dormant still? It's so much on us! The stigma continues, the fatigue continues, death continues, ignorance continues.
I hope to be free of this one day! NO I DON'T LOVE IT! NO I DON'T EMBRACE IT! I DON'T LET IT CONTROL ALL OF ME ... THIS IS WHY I WILL FIGHT IT TILL MY LAST BREATH.
I have a duty to tell my truth and not sugarcoat this condition! HIV stops with me! And this is why I show my face all over the world!! This is why I am so passionate and feel this is my mission ... so NO ONE goes through the hell we have been through and continue to go through. Even if you say you are doing perfect! We know this is not how it goes ... at least for some.
So many emotions I feel ... I have been wanting to write this for a very long time ... It was not the time yet ... but I have discussed with close friends that are going through the same shit! One of them is my dear friend Scott Daly.
I will show a conversation we had between us and this explains it all:
So there you have a glimpse into a conversation of two long-term survivors. Some will relate in every way, some will understand maybe a little bit more why we always talk about how things are just different now, but I know pain and anguish are still the same ... even if you just got infected last month. This is not to disregard the pain a newly diagnosed or even 15 year survivor feels ... It is to try to explain the difference ... at least in my eyes.
As promised, I dedicate this to you, Scott Daly, to my LTS survivor brothers and sisters in the fight and to those that have left us but remain in our hearts.
Love and Light,
Maria T Mejia
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Time to Show My Face and Take the Stigma Away
Maria T. Mejia
I am a Colombian female who lives in Miami, Florida. I've been positive for 20 years. Although almost all my life I've been in long-term relationships with HIV-negative men, I am happily married to a woman who is wonderful and caring. We have been together almost three years and she is HIV negative. I have no children but we will look into having! I am an activist, a peer educator, a caregiver. I volunteered for the Red Cross in education for the Hispanic HIV community and also the American community. I was a pre- and post-test counselor. I have spoken in many conferences and done a lot of outreach in the community, especially in the schools for prevention and education. It is part of my everyday life to educate everyone I can on this subject. Being HIV positive is nothing to be ashamed about! We are strong women, and we will take away all the stigmas slowly but we have to open up.
Read more blogs by women living with HIV/AIDS at "A Girl Like Me"
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