The special challenges of of a teenager who is living with HIV
In this inaugural Global Dialogues blog post, we would like to live up to a promise we made to a remarkable and inspiring young woman: Melissa Ikirezi of Rwanda. One of the 20 international winners of the Global Dialogues contest earlier this year, Melissa lives openly and courageously with HIV. I had the pleasure and honor of speaking with Melissa after the international Global Dialogues jury had selected her, and she said that she had a request, namely that we publish her story in its entirety.
Melissa is also one of Rwanda’s Sheroes; you can see her in a UNDP/Rwanda YouTube film at http://youtu.be/p5NLtVAwbMM (please see Melissa speaking at the 0-minute 30-second mark, then at 3’45”, 7’35”, 8’00” and 12’50”).
All of us are grateful to Melissa for the example she gives us.
-Daniel Enger, co-founder and international coordinator, Global Dialogues
The special challenges of of a teenager who is living with HIV
This story is a true story me and my colleagues we have decided to talk about. In fact, this story it is all about my life in other words it is my testimony that I am going to share with everybody and my friends that we are in the same group are the ones who really gave me the courage to talk about it. So, sincerely I thank them from the deepest of my heart Innocent and Franck thank you.
So, as I promised you I am going to tell you my story; in this story I will tell you the challenges I faced the all 19 years passed and how I used to get over of them. How the true world is and how it used to be for me all my childhood life and even after that and also how I expected my life to be and how my life is.
In a country called Rwanda in Africa continent they were a family; a very happy family made by a beautiful and powerful lady and a very serious and brave man that family in that time they had only 3 little angers girls they were beautiful as their mother, very intelligent and brave as their father. Their father was a very serious and good father who didn’t wish that any bad thing can happen to his babies as all other fathers do all over the world; their mother was a beautiful mom and sometimes funny but when one of the children make any mistake she punish them seriously; that was a good family and happier, But did that happiness last forever?
No, after a certain time the mother gets pregnant for another new baby, but that time the baby was different this time, it was a baby boy! What wonderful news but when the time comes for giving birth for the new baby; oups! The baby died even before his mother saw him that wasn’t only the tragedy happen by that time the mother lost conscience and she went in a comma of three days and because of that the doctor took a decision in other to save the mom’s life they were supposed to inject her other blood because she had lost a lot of blood; that was a very good response for the need of the family to bring their mom back. But on the other hand this was a very bad idea because by this time this brought a huge problem in the family. What was that problem?
During the blood transfusion by that time there were very low health quality they can’t even test blood before giving it to somebody else because the AIDS awareness was still on very low rate and because of all that the mother unfortunately she get infected but by that time she wasn’t even aware of what was going on and suddenly she infected her husband unwillingly because she wasn’t aware of AIDS neither her husband, by the time people start talking about AIDS and the mother went to give a test because now she knew how AIDS is transmitted and she has been through different blood transfusion, but as I told you she was a powerful lady she was ready for any kind of result. What she wanted was the good life of her family, and the result wasn’t really good for her, the doctor told her that she is infected and he advised her to bring her husband with the children to pass the test. But the bad news was that the husband was infected too but the good news was that all their three children weren’t infected. And where am I taking part in the story?
From that time the family leaders I mean mom and dad they took a decision to never give birth to another baby in other to protect the rest of the family against AIDS; but after a certain time they took that decision a miracle took place! What was that miracle?
The mother started to feel special feelings that she hadn’t use to feel for a very long time ago, and when she went to the hospital the Doctor announced her that wonderful miracle, the miracle was that she was pregnant of another baby, but that didn’t seems amazing news for the mother and when she told that to her husband the husband told her that they will do all they can to protect the baby against AIDS. And what happen late?
In that year all that took place it was in 1993 and after several month I mean like four or three months the tragedy happen in Rwanda that was 1994 Genocide against Tutsis and this family I talked about unfortunately it was on the list of families which were supposed to die in the Genocide but they run aware from their country all of them by chance! and they went in the refugee camp in DRC by all those situation the mother couldn’t protect her baby anymore against AIDS, the game had change now, she was supposed to protect her against death, and in the refugee camp that when she gave birth to a little small pretty baby girl on 29th august 1994, it was a good news. But how about the baby?
When the national security were stabilized the family decided to come back in their country and after only a year the father turned to work and a short time after the mother get the job in UNDP and by that the family life was stabilized I mean everything came back to normal as It used to be, and the mother took a decision to take a baby to the hospital for AIDS test and the sad news comes out that the baby was infected and that made that mom very sad and from that time she became a different woman, she decided from that time on to advocate for all people who are victims no matter what they are victims of and she starts being more concerned about the little last born girl all of that she counted on her husband support. But did that last forever?
No, only after a short time the father died because of AIDS and the mother didn’t tell anybody the cause of death for her husband because it was prohibited once you told people about your statement you might be rejected even your children could had done the same thing by that time. In fact it seems hard for the mother to keep a very heavy secret and take care of the family alone but she did all she can and as time goes some of the family members they become aware about the story but they didn’t rejected the mother but on the other hand they supported her as much as they could with also the help of some of the family friends, colleagues with mom at work,… anyway the mother moved from UNDP to WHO and her last job was in UNAIDS. That is when she died by the time she worked in UNAIDS and the infected last born child was ME. What happen to me after my mother’s death?
My mother died on 29th may 2001 I was only 6 years and a half older my three sisters had respectively 18 years old, 16 years old and 15 years old, that is when I started to live my life by that time I didn’t knew what was going on I didn’t even knew about my statement, no one mention the cause of death for mom and no one talked about it they used to tell me that the cause of death was malaria, I was started my first grade and by now, my elder sister she was the one who was supposed to huddle out all the responsibilities because before my mother’s death , mother named her as the chief of the family, I might say that this wasn’t easy for her because she was only 18 years old and she was planning for her high school graduation and she had that national exam to pass, in fact that year seemed difficult to all of us; and really difficult for me because I was going to live with a new person I mean my aunt, because this was my mother’s last wish that our aunt should take care of us after her death. And what happened to me?
Nothing special actually I didn’t pass a longtime with my all three sisters because they were boding students and by the time they graduated they went for study abroad I stayed home with my aunt and eldest sister for more than five years, all those years the only problem I used to had was the loneliness of being an orphan at a very young age and used to miss my mom and even know I do, the most thing which made me sad was that I didn’t knew her very much but she used to tell me that I have to be what I have to be and that I have to see others before seeing myself because people are made by others not by themselves, and for the time she told me that I kept it my mind, and all my childhood I liked to be with others and make fun such as playing different games and by the time I founded out that I can play theaters, and I liked it a lot and when it becomes on AIDS mobilization I liked to play those theaters and one day a friend of mine in ANTI-AIDS CLUB asked me if I ever had the AIDS test and when my answer becomes no, she told with elegance that the role someone used to play in theaters is how s/he is, from that time I was scared I was only 11 years old. What happened then?
I took a very serious decision of passing a test without asking for permission, I know it seems crazy but I tried and when I got to the hospital I had two problem; first they were asking for money I didn’t have it and secondly I was under 18 they could not let me pass a test without a parent! And by those problem I decided to ask for permission but it didn’t work out as I expected, I thought that it will be very easy but unfortunately my sister refused because she was afraid that if I know that I was infected I would have done something crazy, and she told me that she will give me the permission when I get 15 years old, remember I had only 11 years old that means I had 4 years to wait, that wasn’t good but I kept insisting and after a year she allowed me to pass a test but honestly I felt that there was something wrong I mean that I already knew the answer, and I passed the test and the response was positive that I am infected. How did I react?
Normal, as nothing happened, my aunt had a lot of money for buying me whatever I want but I didn’t even interested about anything because I wanted to live like nothing happen, I didn’t want to ask what happened but I cannot forget what happen to the hospital after I reserved my result, the doctor asked me if I knew the source of my infection and when I respond that I do not know but that I think maybe my mother was the source the aunt quickly wanted to cover my mother and father top secret and she asked me if I didn’t slept with any boy before the test, and I told her that I didn’t and she didn’t want to tell me a word about anything, no even hard the courage to make me aware about anything! but otherwise she tried to blame and accusing me in other to cover the past that I didn’t wish to take part in it, that was my first challenge I faced for the first day. What happen after?
After finding out about my statement by the beginning it seems like normal but as time goes I started asking myself about my future how I am going to get married if I will have children and a lovely husband and all thoughts run in my head for only one year, I forgot to tell you that after the result showing that I was infected I started taking my treatment drugs I mean Anti-Retroviral treatments and after a year asking myself a hundreds thousands questions with no solution I took a very serious decision of stopping the treatment and act as I already took it and after I will get seek and die because I thought it was useless to took those treatment with no future I mean with no reason to live. Why I was thinking that way?
The reason I was thinking that way is because I didn’t have anybody to talk too, to express myself to tell about how I felt that time It seemed like I was becoming a problem step by step and for that I thought it might be useful to erase my name on living people list by stopping the treatment by that time I was thinking that I am not like other girls, no boy will date me to be a girlfriend because I had AIDS, and nobody will be interested in me and further more I felt like I am the only one with the same age as mine . What have I done?
What I did after, I stopped the treatment as planned and I felt seek the all 2007 year, that year it was my first year in high school but I couldn’t make it because I was seriously seek and I was supposed to suspend that year and that was really hurtful. What other challenges I faced?
The other challenge I faced was the feelings of being different, in fact when I saw my friend’s neighbors playing, happy it made me sad because even I tried to play with them it doesn’t make sense for me because inside my heart I felt that I am not like them even if I can pretend to be like them I knew that it was a lie. And most of the time I cried and asking God why he let all that happening to me and even took my mother away from me in time I needed her to comfort me? So, from that moment on I hated God with all my heart and even they asked me to go to church I told them that I don’t believe in God because God is selfish thus I don’t have any business with him; actually by that time the problem I had was stigma. What I did after?
After that I realized that I was closed in a very dark and thin prison of past, and after realizing that one of my sister called Gladys told me that there is nothing we can do for the past but there is something past can teach us. So, from that moment on I decided to live my life forward, by trying being with others I mean living a normal life like my colleagues did by the time and for that reason of becoming normal I had my first dating proposal and I accepted! Was that a good decision?
Yes, it was on my side but they were some people who thought that was a bad idea, not because it was really for teenagers but because I was an infected teenager those people were my relatives I mean my aunt and another old friend of family, in fact the reason wasn’t because they hated me but because they thought that to be HIV positive there is no right to love or to be loved, and now I don’t think that they were the only ones who has that kind of thoughts a lot of people think like that, even at the health center when I told the nurses that I was dating with someone they told me that I have no rights and that was real challenge, but I stayed calm and cool. What was next?
When my aunt and that family friend found out that I didn’t broke up with my boyfriend they tried the other way to do it themselves by using one of my best friend, but I was seeing what was taking place and I Personally decided to tell my boyfriend the truth about my life and he didn’t even gave a dame, he took it as a joke and told me that the only thing he knew was that he loved me and I was ensured. Well, was that real?
No, the family friend called Esperance used his son who was a best friend of my boyfriend by convincing him to destroy our relationship I mean me and my boyfriend his name was Etienne (boyfriend) and his best friend was Moses and when Moses refused to destroy my couple his mother terrorized him that if he don’t do as he has been told he will be no longer his lovely son, and he explained himself by saying that he had no plan for how he will do that and the mother said that she had her own plan. Do they succeed?
Yes, after all they separated me with my boyfriend because I had no right to love or to be loved, that wasn’t good that was a violence and I may say that until today there are a lot of teenager facing the same challenge as mine, but anyway that wasn’t all I faced. What are others?
From that moment I decided that I will never love anybody else not because what they did to me but because I was afraid to be broken again and the hard time I passed was at my ordinary level school it was a girl school but there were one of my friend I told my secret and she told everybody about my statement and every student hated me they didn’t even want to talk to me not even to hear me saying a word, it was really hard for me to live with people who don’t want you. What did I do?
Nothing, I passed most of my time crying but they were some student who were different like others in senior 6, they tried to comfort me and understand me even made jokes with me and after that everybody understood that they were no difference between me and them and that year I was supposed to pass my national exam in other to pass to the advanced level and I made it, I went in the other school for my advanced level, but the challenge wasn’t over yet. What do I mean by that?
In my advanced level this was a mixed school (boys and girls) with new students, new teachers, new lifestyle,… everything seems new for me there, but now in my new school I was different I was a determined girl with a clear vision and need, I mean a girl who knew what she want and how she will get it, a girl who knew who she was and how she will live with it, that was me. What happened to me to be so different?
When I was in holidays waiting for my result I meet something which changed my life, that was Kigali Hope Association this Association were created by people like me for people like me, this was an Association started in one of Kigali University called KIST and it was created by infected student who went in that school in aim of advocating for young people living with HIV and in those holidays they came at my follow up health center and choose me to take part in it and I was really excited, in Kigali Hope they taught me about Hope and I saw some young men and women like me but seemed different
Because they have the hope for life and even an oriented life schedule whereby me it seemed different but after being trained as a peer educator and even Human right defender I was different. How?
Now, I was ready to fight for right not for me but even for others, ready to fight against stigma and discrimination, ready to fight for zero new infection, ready to fight for mother to child transmission, ready to fight against personal humiliation of people living with HIV, ready to fight for being afraid of who I am, and ready to start a battle of advocating for other youth living with AIDS. How I did that?
Eventually, the problem wasn’t how I did that but from the day my family heard about what I was about to do they were all against me, because for that time it was still prohibited to talk about my statement but I remember one of my sister told me that I was an old person so, that I had right to do what I wanted to do with my life but that I had to keep in mind that life has no draft. So, in that situation I was alone no relative’s support unless me and my Association. Did I really do that?
Yes I did, now that is when I started my secondary advanced level at my new school I had an opportunity to discuss with the Headmaster and I told him about my statement and he asked me how they can really support; then I told him that even if I am HIV positive that I believe I wasn’t the only one, by the help of the school I found out other young infected students and I made a small club, in other that in free time we can sat down and share some ideas, I really appreciate my school support they did their best to make everything easier for me and my colleagues infected. But I can say that some of them still had the same feelings as the ones I used to have of being different. At school do I faced any challenge?
Yes, I did, by leading such tough club made by hopeless people sometimes they made me feeling like them; I can’t hind you that even thus I was strong sometimes I felt like I need someone to talk to and some of my friends I talk to they were mostly all the same telling me the same thing of keeping my statement as a secret, I can’t even found someone different! Until the day… the day what?
Until the day I found 2 different people with different characters but with one same special thing! Those people are my best friend those are Innocent and Franck those are friends who change my life after a long year finding someone who can tell me what to do by not being selfish but also by consideration of others need, truly the taught me that being HIV positive it doesn’t make any difference but it can make some achievement those 2 boys they told me that I have to start believing in myself because there is a lot of people who believe I me but that I don’t and they showed me what I am able to do no matter what I was facing and by that time also my 3 sisters they didn’t stop telling me that they will watch my back in whatever I will do, but I t wasn’t easy like that. Why?
It is true with my best friend support and sisters as well it doesn’t mean that they were people still around stressing by preventing in some community, talking to me with hash word made to broke other’s heart such as useless, stupid, dead girl, daughter of AIDS … but now, I was stronger another for any kind of challenges because I was aware that the reason I am here now to make a change by making understand that who I am I didn’t choose to be so that doesn’t make any difference, I am sure that challenges are still waiting for me and I am ready for them too. What am I planning to do?
As my mother used to say thing big and become bigger by placing others in front. So, now what I plan to do is fighting against stigma and discrimination and advocating for others like me who can’t speak up for themselves because now, the discrimination we are facing we people living with HIV isn’t really direct but it is indirect because it goes with some rights violence. By the friend and family so strong I will never deceive them but in the in the way I will make them proud because I know that the challenges aren’t over yet but I have to be strong not for myself but for others like me.
Thanks for listening to my story.
I thank from the deepest of my heart my team work
Innocent and Franck
I thank my family member who supported me and always do
I thank everybody who took part in this story
I thank my mother who’s my best role model