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:
I just finished reading this post and once again you have struck a nerve with me requiring me to reach out to you.
"We do not want Maria the activist. We want simply Maria."
This turned out to be a wow moment for you, a chance to peel back the scar tissue (which we all hate to do because
we know the pain this will inflict on us), yet you took on the challenge and realized how much you needed it. Good for you
This was why I chose to go into therapy this year. Now that my HIV advocacy work has been curtailed dramatically I have had a bit of a chance to take a deep breath and reflect on all that I've been through over these past 30 years, the number of friends and support group members I've lost, as well as family members (fiance, mom, dad, and older sister) since I was first diagnosed in 1985.
So when I first went in to the therapists office and she asked why I was there I said I'm here for PTSD and to deal with the intimacy I've lost with my wife ever since we started antiretroviral therapy. Add that to the long list of losses.
And for 3 months I found myself leaving her office wondering when I was going to have that wow moment with her that you experienced during that interview. I was beginning to question whether this was worth the money I was spending.
And then one day I needed a date of the POZ magazine article I had written for a timeline I was putting together and when I went into a closet where I keep pages of editorials and stories I have written I found, what I thought was something I wrote while very angry after attending my first World AIDS Day event, and instead it was something I had written during grief counseling 5 months after my fiance had passed from complications of AIDS in 1989.
Needless to say, because of my curiosity as to the content & its' size (15 pages) I began reading it to my wife and the next thing I knew I was knee deep into a recap of the day I learned my dad was diagnosed with ALS and, later that night, the unexpected death of my fiance, and much of what was to follow in the aftermath. 3 times during this out loud reading of this memoir I totally lost it, crying uncontrollably.
I realized this was something much needed, a recognition that I had been through a tragic event and had bottled it up because I had so much more responsibility, to my son, my business and customers, and to my dad, who was about to wither away before my very eyes over the next year. And he was my business partner who was supposed to be preparing me to take over his clients pending his imminent retirement, however due to being on an invasive ventilator with his illness, communication became a huge source of frustration.
We all have this type of baggage surrounding our HIV diagnosis and the life we've led since, but it doesn't make it any less important. We need to have someone professional to help us validate our trauma, and help us negotiate the emotional minefield we have endured since the day we learned our lives had been changed forever.
I'm glad you are doing that for yourself while continuing to be such an important voice for the HIV AIDS community, especially both infected women and Latino's.
I will continue to pray for you and for your marriage, as we are both blessed to have love in our lives, something many PLWA's do not have and stress about endlessly through their life with HIV/AIDS.
Congrats on being recognized by POZ as a top 100 long-term survivor. To be honest, I think any of us who were diagnosed before there were cocktails (1996) and are still here to talk about it should be recognized by POZ, especially the activists. Where would we be without those who paved the way!
Love & light to you Maria
WOW SCOTT! you have touched me with your words as always! do know brother that I am here for you! we should create a space or conference for us long-term survivors! no one knows what we went through but us that went through it!
May I share this letter publicly! I can use your name..or not use it. I want to use it for my blog as well <3 love and light to you and your wife.
Yes you may Maria. Like you said, only we LTS's have lived this journey, and if it will help make another person's life with HIV better, by all means go right ahead.
How many times have we heard from other PLWA's of the pain they have endured living this illness in secrecy, afraid to share it, even with their best friends, or worse yet, with their own family?
STIGMA CREATES ISOLATION; ISOLATION BLEEDS DESPAIR!
But when do you ever hear individuals who lived through the support groups of the late 80's & early 90's, before ART's
made their appearance, talk today about the horrors of those days? My support group in 1990 started with 30 men and women who were reduced to 6 by the time our facilitator passed from AIDS in 1992.
I can't tell you how difficult it was to visit support group members in the hospital as their disease began to take their life away, while at the same time, witness hospital personnel cringe at the thought of having to be near them, let alone treat, or even feed them.
Each visit to the hospital meant another visit with what you thought your eventual fate would be. And there was nothing pretty about AIDS pre ART's. KS, wasting, and other body ravaging opportunistic infections made for visuals that left lasting impressions on your psyche.
These are all images that make seeking professional help a must for all LTS's. So yes, please do share these thoughts.
Much love to you and your spouse as well.
Have a Happy Thanksgiving.
Wm Scott Daly
Yes my brother ... I am feeling all of your words and include them all . Basically it will be a blog in honor of you. Never give up!! i will never give up myself.
love and light
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