Yesterday I visited Kayamnandi township where I met Makupula Youth Choir and was able to share my story with them. Watch this short video for an impression:
I was very happy to see how they listened attentively. Before I shared my story we had been singing a lot of South African songs without them yet being aware of my story. It was great the moment to show my other face as well which was not about music but about HIV and stigma.
The youth is our future. There is still a long way to beat stigma. I am happy I was able to once again share my positive story about how you can still live a healhty life and fulfill your dreams when living with HIV. Thank you Kayamnandi Youth choir. It was great to be with you!
It has been an amazing journey full with great experiences the past few days. On the 15th we were invited as a choir to sing in a workshop organised by Palesa Africa in Alexandra Township. The Leader of the group, Aveline Tau, had a big surprise for us because she invited different artists to perform as well: Hip pop , R&B , a story teller of Alexandra Township, poetry, kiss Kiss dance (amapiano). They all perform for Us. Then we learned a new song. Aveline knows me from Facebook via an African Artists Network and she knows me as Stigma fighter, so she did not leave me behind and invited me as a speaker as well. When it was my time to shine with my HIV story, the artist community of Alexandra who saw me singing with Duze were very surprised to hear my story. I felt their joy and appreciation of sharing such important information as U=U. I explained the importance of doing HIV testing and remain faithful to take medication in order to reach the undetectable level. HIV has now become a chronic disease and we have medication, so we must make sure we take it, always. I told them that they should not jump to judgement when they see somebody with HIV because HIV does not define us. I thank them for being my listeners. It was amazing experience interacting with those artists and the rest of the community. I believe this is the best way of reducing the stigma.
Next day, the group went to a wildlife Park, but I had a mission! I went to visit Pretoria to refresh sweet memories.
So I started my Tswane journey at Menlyn Park, where I found Wimpy, a famous food chain in South Africa! This was an epic place during my pregnancy as my baby wanted me to eat only tuna sandwich from Wimpy. As I passed by, a waiter girl looked at my T-shirt and she smiled and asked “Are you an activist ?” I said, “yes I am”. She told me that she would love to do such work as it is a big problem here. I asked her why she wanted to join the fight, if maybe she knew someone with HIV. She told me that her close friend has HIV. I told her that she can support her friend by speaking out on behalf of her friend. She asked ”Are people not going to think that I am HIV positive too?” I told her that in any fight you should expect to win not to loose. I explained how I won my battle 16 years ago, I told her how important it is to keep trying even if people will try to push you. You must know what you want and keep finding ways to reach your goal. Then I sat down and had a cappuccino since they don’t sell tuna sandwiches anymore…
Then I visited another favourite of my husband and me, Baobab restaurant. We had many great lunches here after our shopping spree. Back then it was the only place where I could eat Brochette like they make them in Burundi. So I got in and spoke to the waiter, Jiji. He showed me around, how Baobab had been extended. Then I told him how special this place was for us. And I saw myself that it still is for many because during my lunch this couple got engaged during a birthday celebration. I congratulated them, and of course they ended up asking me about my T-shirt. So, here goes my story again. Jiji already asked me before and I told him, and much he did not know. I made a video to express the gratitude of what he has learned from me. Again, another way of making a difference.
On my way out I met Anthony from Ghana who greeted me in his language. I responded to him in English that I am not from Ghana but that I know it is a greeting. He followed me and asked “Hey lady, let me ask you something. Tell me, what does your message mean?” So I shared it once again and what stuck most was when I explained about U=U. All seem to be so surprised!
And now to my highlight which I almost missed as so much has changed in the area… But I found the sign to the Newland area. I could not wait to get there, our former home here in South Africa. The house where our son Rio spent his first months in this world. I finally saw some familiar shops on Ave Lane, and them I found it, Marigold. I boldly knocked on the same gate that I closed 13 years ago and a lady opened. I asked if I couls make some pictures of the house that I left so long ago now. She said yes please, though she warned me it has now become a community house and that they changed many things. Despite the changes, so many parts were still the same, it made me very emotional to see the place again. My mission was accomplished.
On my way back to Menlyn park for a taxi , I saw a street dancer. He inspired me for what he does for people passing by in their cars, despite no one really giving him anything. And yet he kept dancing, again and again. He did not give up and he said he will keep doing it everyday. I felt I still wanted to see more. So I made a video which can be watched on my Facebook page. To conclude, U=U opened his eyes as well. He promised 100% to go for HIV testing.
My final visit was Hatfield. A place which gave me comfort after my first visit seeing a HIV doctor and gave me life by supplying me with my first medication. I was supposed to meet Dr Mogotlane in this place, but unfortunately she had to take exams in Durban. So I went to visit the pharmacy which supplied medication for 3 years, WOOLFSON’S PHARMACY .I wanted to thank Dr Vally personally as he helped me a lot during that time. He was very discret and he never delayed my medication. Every 3 months he would get it ready before my departure to Luanda. Unfortunately he was not around that day, and his colleague did not believe me so he asked my surname. Guess what? I am still registered in their system. I like so much! They asked my contact details so he could get in touch one day
I finished my trip at Hatfield Plaza. A nice, small shopping mall. Luckily, it has not changed so much. But Hatfield Square, which used to be a nice collection of shops and bars has changed completely. They closed all shops and bars and build a lot of apartments. My special place of Amarula coffee and snails and garlic bread was gone.
My visit was useful with fun, education and refreshing memories. From Tswane I went back to Glenburne Lodge where I joined my choir to the Carnivore restaurent. What an amazing day!
Regina Mundi is latin for ‘Queen of the World’ and is amreference to the Virgin Mary. During the apartheid era the Regina Mundi church opened its doors to anti-apartheid groups and provided shelter to anti-apartheid activists. Because of the shelter it offered, Regina Mundi is often referred to as ‘The people’s church’ or ‘The people’s Cathedral’.
Yesterday, together with my choir DUZE Nomshikashika, I visited Soweto just to get to know its culture and important history in the apartheid struggle. We ended our afternoon at Regina Mundi with a rehersal with its choir. It was very beautiful and I was very touched singing in a famous Church with a local choir. All my youth memories from my Catholic church came back.
As I was wearing my HIV stigma fighter t-shirt an eldery man from the choir asked me “tell me, why are you wearing that t-shirt?” I answered him how important it is to fight the stigma around HIV and I bravely told him my story. He said “Wow, your story is very encouraging, you should share it in church. Many people, they stop believing as they think that God does not excist anymore”. He said that on Sunday he would introduce me to the Lady who does the announcements in the church.
I went back to our hostel, very excited to share my story in a Catolic Church in South Africa for the first time in my life! The same evening I got disappointing news that a few choir members were very worried the church would not welcome me to share such a story as it is not done in South Africa and that I would put shame on the choir’s name. I could not believe it, because I trusted everyone. First I went to my room and I cried very hard, then I called my husband just to be there for me.
After calming down, it was time to fight back! I went to the chief of our choir and I shared my feelings about this news with him. I told him that I felt stigmatized and that I wanted to fight back, not let it pass. Luckily he understood me very well. We sat together with the people that expressed their concern and talked about it. The solution we agreed on was to talk to the priest about my story and ask him permission to share it in the church. If he would say no, then I would deal with it and not blame the choir from stopping me to share my story.
This morning, the chief and I went to the priest and I was asked to explain what I wanted; “I want to give thanks to the great work God has done for me 16 years ago after my HIV diagnosis”. The Priest listened carefully, with eyes that showed understanding, and then he said “Normally we never give a special testimony during our service , but I will give you 5 minutes”. I was very grateful for this answer.
It seemed God spoke to the priest, as his preaching matched my story. It was about leprosy and how this led to ostracising sufferers in past times. Well, for me this was an incredible opening and when the Priest called me to join him, I felt a fire burning inside me. I knew my message would be well received in this church.
I began by referring to the Priest’s wise words and mentioned that in many parts of the world, these days HIV /AIDS is still considered as Leprocy a long time ago. I shared my story about how I came to South Africa from Angola to find treatment, how God answered my prayers of having children without HIV, and how God granted me many more days and years since I was 25 and now almost reaching 43. I reminded the church that God loves us all, even people with HIV/AIDS. I finished my story by telling that whoever has the disease, it is not a punishment. Continue treatment and continue to take good care for yourself. You are not alone. God never forsakes you!
I could read on peoples’ faces how my message was touching them. They could not wait for the end of the service to come and hug me. I immediately heared about one of the church’s choir members whose daughter has the same age as me and who also has HIV, and another lady said her young sister has HIV for 15 years . When I almost went into the bus to join my choir, a long term survivor came to hug me.
I am grateful for my choir to give me this opportunity and help me to find a way to share my story. Today taught me that it is important to keep on fighting and share the story of people that have to face stigma day in day out. Just like the brave people of South Africa fought apartheid, eventually HIV stigma will be beaten.
I cannot wait for September to finish, so I can finally visit South Africa with a purpose after 13 years. Many African people may think why exactly I choose to go back? Well, I have a very positive reason. I believe in change, as I have changed the past few years by coming out of the closet and became a HIV stigma fighter.
I would like to reach those people that never got a chance to speak out about what stigma does to them and reach those who are still afraid to find out about their status. I want to share my living story with passion.
I have beautiful memories of South Africa. It has taken me so long to revisit the country that gave me my beautiful son and say thank you. Every year, on his birthday I get all those sweet memories back. Very often I think, what if I never managed to get to Pretoria for my HIV diagnosis and treatment? Was I going to last this long and reach my dreams? Well, thanks to my good health provider in South Africa, I did it! Dr.Mogotlane, you were my savior, you treated my diabetes, HIV and followed up on my pregnancy! Every day, I am still very thankful.
As I was still not open about my status, back then I never managed to meet any other person living with HIV. It was a taboo and no one did really dared to talk about it. This one of the reasons why I want to go back; Saying out loud and proud that being an HIV positive is not a curse, not a punishment from God and that it is not a crime. That you can still fulfil your dreams such as having children or living a healthy life. I want to share my story as it is a story of hope, encouragement and compassion.
So as HIV stigmafighter I want to show South Africans how grateful I am by sharing my stories during my performance with my Choir DUZE in the Townships. Living with HIV, I am proud to sing the solo of INCULAZ’IYABULALA (AIDS/HIV is killing us) and thereafter share my story with the people. This is how we breakdown stigma. In the end, people should know that with HIV you are still a human and all your talents and knowledge don’t go away.
Get ready South Africa, I am coming back with Positive vibes. Let’s sing, dance and get HIV education.
My life has been shaped in many forms, so my memories are sometimes triggered by sounds, pictures, food or even some trees. I never knew that a toy could save a life, even more than once. So I would like to share the story how my daughter’s toy saved me during the first years of my HIV diagnosis.
I must have told this story many times now during my HIV education at schools, in communities in the Netherlands and with the Batwa in Burundi. In French it is said “Les Paroles s’envollent mais les ecrits restent” which means “Spoken words don’t last but those written stay forever”. I choose to write my story down so that many people may read it. I find it funny to share.
After my diagnosis in November 2003 in Luanda, Angola, I did not have access to my HIV treatment. The Doctor officially declared me death by her words “You are going to die, you are not allowed to have children. Better go buy your coffin!” She sent me home without prescription. Like that I was on the street without medication, without hope. It took us time before my husband found a contact in South Africa for my treatment. I was so scared , I had many nights full of nightmares.
It finally happened in December, three weeks before Christmas. I got good news that I was going to Pretoria for HIV treatment. I was very excited to sit in that plane to South Africa. We stayed in the Hatfield area in the Protea Lodge, a very lovely place. But I could not wait to be at the Louis Pasteur hospital to meet Doctor Lewis for the first time. He was very kind, he answered all my questions and made me feel I was not a monster. I got out of his office with a prescription and a big smile.
I did keep in mind though what I had experienced many times at Luanda International Airport; They would search us everywhere, pockets, bags, and there was even a special lady who would take you to a room to check in your underwear if you did not have diamonds or too much money. So I was worried that the moment I would reach Luanda I would be caught with 3 months worth of medication. If caught, I would have gone to jail or be banned from entering Angola or even get killed immediately. I had to find a suitable solution of hiding my medications as good as possible.
So we went to Hatfield Plaza where I took my favouriet drink Amalura coffee, eat garlic snails with garlic bread to enjoy the sunny afternoon and try not to worry too much about my return to Luanda. So I came up with a plan: I went to a sport store and bought three big water bottles and filled each of them with my 3 months supply of medication. Most of my HIV medication needed to stay in the original package and to be saved in fridge, but that was not my concern for that moment. I needed them to reach my home in Luanda without being caught.
I can tell you, I was lucky to have a 2.5 years old daughter who had a beautiful baby doll named ‘Keza ” which means Beautiful in Burundian Language. It was a talking doll that would start crying when her dummy would fall out. So I hid my bottles of medication between toys and nappies in my daughter’s small trolly bag, and on top I put Keza with the dummy still in her mouth. I packed it in such a way that when they would open the bag, the dummy would fall out and Keza would cry like a real baby.
And so it happend at Luanda airport: The customs officer opened the bag and Keza started crying in front of him. He was visibly shocked, yes even scared. And I pretended there was nothing dangerous in the bag and said ” Oh, here are only the toys of my daughter”. He said “Oh, please stop that crying baby I am getting crazy already! Close your bag and get out of here”.
What a magical moment! I was free to go. We repeated this every three months, and every time I went through the search my heart was beating FAST and LOUD, like BATIMBO ( Burundian drummers ) of Burundi. I was lucky enough to meet different custom officers, so they never discovered my trick with crying Keza to avoid serious interrogations. I was happy to finally move to Pretoria where I started my new project of having a baby since I was three years on successful treatment. Long live KEZA, you saved my life!
Thanks a lot, and thank you my daughter to help carry that bag even if you did not know mama’s trick! I am thankful to you too!
In mijn blog over koningsdag vertelde ik al dat we 132 nationaliteiten in Amersfoort hebben. Toch zeg ik altijd dat wij ‘one people’ zijn, want uiteindelijk zijn we namelijk op vele manieren met elkaar verbonden. Deze zondag was ik hier getuige van tijdens het multiculturele Colourful Cultures Festival in Liendert.
Ik herinner me nog goed dat ik samen met Paul Liklikuata en Liekje Hoffman in het Huis van Bartels tijdens het drinken van een kopje koffie op het idee kwam om iets te organiseren dat zoveel mogelijk nationaliteiten zou verbinden. De wijk Liendert herbergt 80 van de 132 nationaliteiten. Ons idee om een festival rondom diversiteit te organiseren begon als een droom en om dit te mogen waarmaken was een grote eer. Het was mijn eerste keer om te helpen bij het organiseren van een festival. Ik ben daarom supertrots dat we het afgelopen zondag voor elkaar kregen, en dat op zo’n warme dag!
Het ‘Colourful Cultures Festival’ zat bomvol activiteiten voor jong en oud. Gospel Kidz, Liendert Orkest, Evangelique Rap, Indonongo, Suzuki Guitar groep, … En natuurlijk Duze Nomshikashika een koor dat Zuid-Afrikaanse liedjes zingt in de lokale talen, uniek in Amersfoort. Dit koor is heel speciaal voor me omdat ze zingen over de strijd voor vrede en de strijd tegen hiv en aids in Zuid-Afrika. Als HIV stigmafighter ben ik sinds maart van dit jaar lid geworden van dit koor en zondag heb ik twee liedjes solo mogen zingen met het koor.
In een liedje had ik het over hoe hiv en aids (nog steeds) zo vaak een einde maakt aan het leven van mensen, en hoe we hiertegen kunnen vechten. Aan de reacties van het publiek las ik dat sommigen echt geraakt werden door dit lied terwijl ik met passie zong. Dit is een boodschap die ik in oktober ook naar Zuid-Afrika wil brengen terwijl ik met het koor in Soweto en Kaapstad in de verschillende Townships optreed en een kans krijg mijn hiv verhaal te delen en hoop te geven aan de mensen. Tijdens onze show werd er een oproep gedaan te doneren voor mijn reis. Ik wil hierbij graag iedereen bedanken die zondag een bijdrage heeft gedaan en zo helpt mijn droom waar te maken.
Een andere activiteit die me de afgelopen tijd ook bezighield was de modeshow. Ik heb 11 nationaliteiten bijeengebracht om hun mooiste outfit te presenteren. We hadden een prachtige Dominicaanse groep, MODESTO AQUINO, en mensen uit Marokko, Nicaragua, Ethiopië, Jemen, Nederland, Indonesië, Burundi, Congo, Kenia en Zuid-Afrika. We hebben een prachtige show gegeven waarbij iedereen met trots iets origineels en moois toonde.
Burundi werd vertegenwoordigd door mij en mijn zoon Akira. Iets waar ik heel trots op ben als moeder, om de Burundese cultuur te delen met de nieuwe generatie. Akira is geboren in Nederland en heeft een Nederlandse vader, en het was heel bijzonder om hem te zien in een traditionele outfit gemaakt van hout (INYAGITI). Dit werd zo gedragen door onze voorvaderen voordat moderne kleding beschikbaar was. Ik was gekleed in een mooi gewaad met traditionele prints, zoals een lokale vrouw in een dorp. We droegen beiden een Burundese vlag.
Wat kan ik nog meer zeggen? Een grote eer! De show eindigde met een kleurrijke dans waar alle landen letterlijk samensmolten tot ‘ one people’ . Lachen, plezier maken, daar gaat het allemaal om toch? Wij zijn met recht een ‘ Colourful Culture’ hier in Liendert.
Tot slot nog een speciaal bedankje aan al die mensen die ons geholpen hebben dit festival waar te maken. Zonder alle vrijwilligers, de bijdragen van de gemeente Amersfoort en de Rotary Club, was dit niet gelukt. Urakoze cane!
Bedankt dat je erbij was en hopelijk tot volgend jaar.
In mijn doodsangst, angst, machteloosheid en nutteloosheid, denk ik aan mijn broer Albert, opnieuw ben ik een familielid verloren vanwege diabetes en bloeddruk. Mijn hart huilt vanwege dit grote verlies. Mijn tweede broer verliezen aan diabetes is verwoestend, maar ik weiger me te verliezen in negativiteit. Ondanks dat ik weer getroffen ben door een stergeval inde familie: Ik verloor eerst een zus vanwege kanker, daarna een zus vanwege bloedarmoede en nu twee broers aan de gevolgen van diabetes.
Toen ik vanmorgen huilde kwam mijn jongste zoon Akira naar me toe. Hij omhelsde me en zei: “Mama dat soort dingen gebeuren in ons leven, en je moet sterk zijn!” De boodschap raakte me. Ik vroeg mij af: Waarom moet ik iedere jaar zoveel mensen verliezen elk jaar? Hoeveel sterker moet ik zijn? Maar Akira heeft gelijk, ik moet sterk zijn voor mijn kinderen. Als iemand die dezelfde ziekte heeft die als mijn twee mijn broers moet ik sterk blijven. Zodat ik gezond blijf en mijn kinderen zie opgroeien.
Dus besloot ik te zoeken naar de zoetste herinneringen aan broer Albert. Hij was de een na oudste van ons gezin en ik de de jongste. Hij was toen al veel ouder dan ik, maar hij was nog steeds mijn grootste inspiratie. Ik heb geweldige herinneringen aan hem die me Matoroshi noemde toen ik 4 jaar oud was. Het betekent grote fakkel of grote ogen. Tot aan zijn allerlaatste dagen was hij de enige in mijn familie die me Matoroshi bleef noemen.
Hij ging met me spelen, zodat ik niet voor het diner in slaap viel. Hij leerde me hoe moest dansen op rock-en-roll en hoe ik op bruiloftspartijen in mijn dorp Murira moest dansen. Hij nam me mee naar feesten en liet me zien hoe ik moest dansen. Dankzij mijn broers danslessen stal ik later op feesten zelf de show.
Mijn broer stond in het dorp bekend als de heer White, omdat hij zich in witte kleding stak. Echt een coole, mooie kerel. Hij was de beste ontwerper in de hele provincie Bubanza en hij zou je als een persoon zonder fouten kunnen tekenen!
Hij was mijn aller coolste broer! Hij heeft nog veel meer herinneringen achtergelaten en zijn tien kinderen, de rest van familie en vrienden zullen hem missen.