Strong women

One benefit of being open on social media and sharing my story is that it has helped me to connect with people who are dealing with health problems other than HIV. In the end we are all going through the same pain. Some suffer from depression, some from cancer or heart problems, and we all take medication everyday. Being @hivstigmafighter on Twitter has helped me to connect with many other people who have health problems. I am about to share the story of one person who lives in the Netherlands.

It’s amazing when people from different backgrounds connect and share their pain, their joy and inspire each other in different ways. Sevim suffered from depression for many years, and no one was able to understand her problem, apart from her family doctor (GP).  She went through a lot alone. While on Twitter she came across my name @hivstigmafighter.  She read my post and realised that there were other people who have gone through a lot too, and in a way she could never have imagined. And she realised that those people could understand her pain too. She connected with me, and then started tweeting and retweeting my posts. I was doing the same and we followed each other. We realised that we lived in same country and so wanted to meet up. Last Saturday it finally happened. She came with her youngest son to visit me in Amersfoort. It was so great to finally meet Sevim in person. A very lovely lady and very chic and stylish!

We spent a long time telling each other our personal stories. She told me how she had been in a very abusive relationship.  When she became depressed, neither her family or her ex-husband understood her pain. They thought she was going crazy. But she fought her depression for a very long time until she won the fight. She still uses medication, but now feels good. Then it was my turn to tell her about myself, my life with diabetes, with HIV, my accident, heart attack and a little of my youth – the life I led during the war before HIV came into it.  She took the opportunity to ask more questions about HIV and AIDS.  I love it when people want to know more, so I helped to educate her with pleasure. We had dinner and drank our wine while our children were playing happily together. Isn’t it amazing?

To me and Sevim it does not matter what kind of illness we have, the pain is the same. People are always judging her, just as they did me because of my HIV.  Depression is a serious disease and there is a lot of stigma around it, just like there is around HIV.
But I am so happy to find a new sister in this world!
Thank you,
Peace,
Eliane 

The Mask.

I had been wearing The Mask for many years.
I would smile and look happy
while no one knew what was behind that smile.
The Mask was heavy, I could not take the weight anymore.
Then I decided to take The Mask off . . .
what many called coming out of the closet.
I wanted to feel free, no more shame, no more lies.
Why does it have to be so hard? Why did it take me so many years?
I needed time; maybe you still need time ...
But don’t wait too long, you are missing out on nice things.
I know I am not alone to have gone through this
so here is my call to everyone who is still wearing The Mask.
Take it off - if you want to fight HIV stigma;
Show your face - I know you are not a coward.
Aren’t you tired of hiding?
Aren’t you thirsty for freedom?
Take off The Mask, I’m begging you!
Be the hero and voice for the voiceless.
Be unstoppable like a cyclone in the islands.
May your voice be heard like thunder on Mount Kilimanjaro.
Shout loud - and say: “No more HIV stigma!”  
. . . Isn’t it lovely to be yourself again?
Peace,
Eliane

The next Generation

I keep on feeling beter and beter since I am open about my HIV to my children. Saturday I was invited to HIV positive women activities in Sittard. Mothers who have children were allowed to bring them along. I thought that it would be more for very young kids from 0 to 8. I asked if it was ok to bring my youngest son of 10. Of course he is welcome. That was the answer from the organisation for then activities. So it was my turn to check with my son Akira if he is interested to join me. He had 3 choices. First to join his big brother Rio and his father to go train spotting at Lage Zwaluwe where Rio was going to film all trains. This is his hobby since he was 2 years old. The second choice was to go play with his friend, and the third was to join mama to the women HIV activities.

Guess what he chose? He wanted to join me. I asked him if he is sure about going to Sittard, sitting 2 hours in a train and join the belly dance. His answer was: “Mama I want to support you in many things you do regarding fighting stigma, connecting with other people with the same condition as you. I am not ashamed being around you in public, you are my mom and my most beautiful and courageous mom I have ever seen in my entire life”. Well not that he is very old... only 10years. But this brought tears to my cheeks. Then he asked “Mom are you crying? Did I say something sad or did I offend you?” I said “no my dear, these are tears of joy”. I know that all the energy I put in this fight will not be for nothing, because  even if I will not be able to continue you will pick up what was left.

So we went with our train to Sittard. We met great people, I had a nice chat. Some women knew me only via my facebook positive posts. Some had read my stories on Hello gorgeous and were so happy to meet in person. So we hugged, and laughed together. What happened to my son AKIRA?

Well, he already met 3 kids he knew from Positive kids family weekend. So they were playing together, and sometimes he would come around and give me that ‘I love you mom kiss’ and I would hear him and other kids playing piano.
I was excited to do the belly dance. It is something totally different from African dance that I am used to do as a professional dancer. I was looking forward to learn it together with positive women and connect as I always do when I dance. What a great day, I enjoyed every single minute of it. The kids were dressed in a belly dance outfit just like their mothers. I thought maybe Akira would not join or put on the outfit. It turned out he had a lot of fun with it. He likes to dance too I guess, something he picked from me. Hahahaha.

We had a nice time together. After the dance we had nice oriental snacks and then went home.
Till now I don’t regret having told my children about my HIV status or let Akira join me in women’s group because I believe when we empower the young generation, we stand a chance of reducing HIV stigma and zero infection.
Peace,
Eliane

This magic moment

It was Sunday afternoon and I was walking with my daughter, Loris, to the Emiclear shopping mall. I stopped to greet my neighbour, Janneke, who asked about how Rio was doing at secondary school. My daughter herself then chatted about how exciting it was for her to start her practical training next week.

While we were talking a beautiful young woman walked past us barefoot. I watched every single move she made, thinking about myself back in Africa as a child, when I walked barefoot most of the time.I could not let her go without giving her a  compliment.

People like her are very rare these days. We always wear shoes because the streets are not safe - you find dog mess, litter and broken bottles and other glass. I like to go barefoot in the countryside sometimes, where there is far less chance of sharp objects to harm my feet. I said to her: “Wow, it’s great to see you walking without shoes. I like it. I did it a lot in Africa where it’s normal to walk barefoot. It’s healthy to be in direct contact with the earth.”

She said her name was Krista, and told me about how she dreamt of going to Africa, just to feel the vibe. I was happy to meet her even if just for a short time. My neighbour continued on her way home and my daughter and I went on walking to Emiclear.

Then, a few minutes later I saw Krista again. She was drinking coffee at an American coffee shop, getting a note book out of her bag.  I asked: “Are you a blogger?”  She said she was, so I replied “Me too!”  She asked: “What do you write about?” I answered: “My personal stories about HIV. I have been HIV positive for 15 years”. She was very surprised. I was wearing my U=U T-shirt, and head scarf. I knew this was the right time to use the U=U message to inform her about HIV. I explained my mission, my dream of a world without stigma and shame about being HIV positive, and how important it is for people to know their status by testing. She was impressed and said: ”You are truly amazing Eliane, you turn your pain into your greatest gift”.

I will continue to use this gift to save more lives. By being such a good listener she made me very happy and I am very impressed with what she does herself on her blog. She made me realise that everybody on this World has a unique gift and, if we all use this gift, we can make our World a better place. Krista, you are the inspiration to many, please keep up your remarkable work!  I thank God to meet such a magical sister!

See you soon!
Peace ,
Eliane

Educating the Educated

What would you do if you are being called an assassin, simply because you are sharing information? Here is what happened to me when I shared important information on PrEP to a seemingly well educated person...

I am sure many of my fellow Burundians are not well updated about HIV. So this week I decided to share the latest on PrEP as a pill you can take to protect you from being infected from HIV. When you are HIV negative of course. I wanted to communicate in Kirundi so that people who don’t speak English or not so good French could understand what PrEP is all about. So I posted the PrEP information in Kirundi and asked the leaders, if they learned something new, to share the post so that their friends can learn as well.

Somebody shared it on her timeline with a Belgian man with a medical background, working in Bujumbura. He demanded to explain or give a short summary what I am talking about in French. I saw we had one friend in common that is why he could see. I did not want to mix languages in this post and I wanted to keep conversations in Kirundi with Burundians. So I went through the inbox via messenger and explained that I am sharing the information about PrEP, a pill that can prevent from being infected from HIV virus. He went to look at my Facebook profile and he sent me this message” VU,VOTRE DIPLOME.JE VOIS QUE VOUS N’AVEZ AUCUNE COMPETENCE MEDICALE, SACHEZ QU’EN FAISANT CROIRE QU’IL YA DES PILULES QUI PREVIENNENT L’APPARITION DU VIH. VOUS SEREZ RESPONSABLE DE L’INFECTION ET LA MORT DES PERSONNES QUI FONT CONFIANCE. EN PARTAGEANT VOTRE IGNORANCE CRASSE, ET GAGNER DE L’ARGENT SUR CETTE ESCROQUERIE INTELLECTUELLE, EST LAMANTABLE! BON WEEKEND.”

I immediately shared with him some website that have information on PrEP, for example readily available info on CDC, SOAIDS. He did not recognize those, and instead he went further by insulting me, “ Cette escroquerie est indigne. Aucun medicament ne protege le VIH ...Vas-y. Fais ton petit business mortel. En bonne conscience. Se faire traiter d’ignorant par une petite idiote, est plutot un compliment... merci .Assassin!”

When he called me an idiot as a compliment, and an assassin, he was expecting me to just give up and look away?! I promised myself when I came out of the closet about my HIV status to never be afraid to speak out. To be a forgiving person when I meet this kind of people who think they know more and think they are highly educated and want to put me down because they believe they are better than me?

I went straight to the point and showed him that I knew what I was talking about. I gave many reasons why it is important to educate people on PrEP, not only Burundians in Burundi, but everywhere in the World. To double check if he is aware of all information, since he claimed to know about HIV. So when I asked him if he knew about U=U, he simply ignored the question and was not able to answer this correctly. So here is a man that does not know the facts about PrEP or U=U and calling me an assassin and idiot.

I decided to forgive him as I saw an arrogant man with low self-esteem and who did not want to bother to read up on the facts. I guess it was difficult for him to imagine a woman without a medical background to be smarter than him. Well, mister, my education level is good enough to study and understand live-saving information and share this with my community.
I will never give up because those kind people. What I will continue to do, is educating them, show them the way  to communicate. If you are an educated person and you see somebody sharing wrong information, the first thing you do is correcting that person. NOT INSULTING. In this way you can show the World that you are better educated!

This showed me how much stigma and ignorance there still is in this World, even amongst well educated people. They will melt down the moment we stand up against bullies and promote  U=U, PrEP as tool to fight stigma and discrimination.

I live to Empower, Inspire and Educate.

Peace ,
Eliane

My real friend

Many of people living with HIV are so afraid to be open about it, even to their true friends. It is not easy to do it but once you have done it you enjoy the freedom as much as anyone who is HIV negative or don’t even know her or his own HIV status.

Let me tell you about this special friend Eliane I have been talking about before my journey to Sweden.
We knew each other from very long time ago before Diabetes and HIV came in my life. There was time we lost track of eachother. Somehow we found each other via social media and I realised she was in Europe. I was not yet open about my HIV. Every time we would talk I would feel like telling her my secret. I knew she was working as a nurse but I doubted to be open. So one day we were having a topic on diabetes and she asked me how I was dealing with it here in Europe. I responded very well and I felt I needed to open up to her regarding my HIV status.
So I told her ”Eliane I am HIV Positive”. She said “No Eliane are you serious? You can not just tell me like this on a whatsapp call?” I asked her why? She said she needed to give me a big hug. She added, Eliane if you take medication you will live healthily. I told her that I take them many years, and that I am living healthily and that only sometimes Diabetes gives me a hard time. She said ”To me you are the same Eliane my best fried and I will always love you. This HIV is just a disease you can control and it is not going to ruin our friendship”.

She showed our real friendship during our visit to her home. She was not ashamed to introduce me and my family to her friends. Every friend of her that we met, most are connected on facebook where she would share her photos and tag my name. Knowing that everyone will check my account and will see all my facebook posts about my HIV positive. This is a real friend. Who loves me as I am, who is not afraid to be seen with someone who is HIV positive. Although in our African community some will immediately judge her and gossip that she also is HIV Positive because she is my friend. Hear me out, my friend Eliane Hallen is not HIV positive. We may share the name but we do not share the virus, the fact is that she is beautiful like me and she is my friend!
Saying goodbye is not a nice thing. But Somehow I need to be back. Holidays can never last for ever. We will miss you Eliane, Roxane, Rian, Johan and all the friends we met. We will miss Vasteras and the vibe! We hope to meet again, this time in Netherlands.
Please come to us soon.
Peace,
Eliane

Living the fairytale

It was quiet impressive visiting my best Friend Eliane at Vasteras.
We travelled from Stockholm by train to Vasteras station. When we arrived I was looking for her in wrong direction.. hahaha I guess I was nervous! Then I heard her voice coming behind my back, when I turned we screamed to eachother saying our names Eliaaaaneeeee! My husband and kids enjoyed watching this small show which lasted about a minute, accompanied by lots of hugs. Then it was time to greet my family and for me to greet her family and we all went to Eliane’s home!
We had a lot to catch up but communication with the rest of my family was a bit difficult. Eliane can speak Swedish, French and Kirundi and her kids could only speak Swedish and few English words. I could speak English, Dutch, Kirundi and French. My husband could speak English, French, Dutch. Somehow I was playing a translator role. Kids are amazing because few days later they were communicating without translation. Eliane could speak French to me and my husband which was very easy for the 2 days Michel was there. After it was Kirundi and Swedish and Dutch talk hahah!

We visited nice places like Airplane museum, Water park Kokpunkten, an impressive water paradise for kids where they have a lot of water activities for kids and for adults you have a relax place that includes sauna, steam water, and relax pool. It was nice since it was raining, finally. We visited many more nice places in Vasteras such as the Dom cathedral which has very beautiful scriptures of Jesus and well-designed chairs. Eliane has many friends like I do. We went to visit a couple on the countryside outside of Vasteras, her so called Swedish parents. Very lovely people and the place reminded me and Michel of our House in South Africa.

Cinderella Cruise ship.
I always wished to be on a cruise ship and sleep on it and just go as far away as possible. Never say never because this dream came true at least! I was able to experience life on cruise ship Cinderella with my boys. How was our trip from Vasteras to Stockholm where we board to Viking Line Cinderella?
Friday afternoon a very luxurious bus came to fetch us from station Vasteras and brought us to Stockholm bay where we went on-board. Back when were still in Stockholm I saw this very big boat Cinderella quite often and told my husband that this boat is always in the water, like it never goes away. He said ‘Maybe they have many with the same name”. So when this time we go on-board I saw that it was Cinderella. I was so happy that She was taking us to Finland! 
On-board is the same routine like Airplane. Show our passports and tickets to the officer, our luggage’s to the belt which goes through the scan. Akira was so nervous he wanted to take everything out while searching his Nintendo. Till they told him that is not necessary. It all went well.
By the entrance of the Cinderella there is a photographer to make the most memorable picture to take home with! Cinderella is a huge ship with 12 floors and more than 1,000 rooms. We were staying on the 6th Floor in room 6033. On the same floor there was a Spa for when you wanted to relax. On floor 7 there was lots of shopping and Restaurants. Floor 8 had a Casino, children playground,  game room, Cinema and many other activities. I loved the Captain’s floor, this was on the 12th Floor where you can view the water and the surroundings. When we got in our room, the beds were made but you needed to push a button to bring them down. The cabin had a small clean toilet and shower. Everyone was very excited to sleep in a boat. We had never done it before and felt weird to move around all night. Unlike on a plane where you are stuck to your seat. The boys moved all over the ship and visited basically every floor.

We made a reservation for diner at 20h30 because we thought we will first make up our bed and then prepare for diner. But it was all done for us. So we had plenty of time before diner to look around and discover Cinderella.  When entering in restaurant we had a table by a window with a view, just like our bedroom. The food was very good with many choices, only we have to stand in a long queue. I had to take my medication a bit late since I first needed food in my stomach. It feels weird to be in a Buffet restaurant on boat! After diner the boys were running everywhere and I went with Eliane and her youngest Son Rian to a disco for parents and kids. It was an entertainment because we danced to live music.
Unfortunately at 23h the kids had to get out because that is the time for real adult disco. You know it is the time when the security guard enters and every parent and kids get out with no words! Then we had another place, Harmony restaurant, where parents and kids can do karaoke. Some kids have got really talents! They sing very nice. Akira was doing the amazing moves I was very proud to see him inspiring some others kids and Rian as well! 
At 1.00 night it was the end of the party so everybody gets out again for a Dj to start disco for adults! We went to our room.

Troubles
In many places the information is written in Swedish, and you have to search careful to find English. Eliane did show me how to open my bed to get it down. I did not need to read any sign warning in Swedish. When we came back to sleep everyone is very tired, we wanted to rest for the next day, so I pulled down the boys bed, but I forgot my small suitcase was under the sofa which will change into my sleeping bed. Once I pulled down the bed, it was stuck. I did not get it down nicely and it did not feel comfortable. I could not sleep on it. When I checked why, yeah I saw the suitcase. Immediately I read the warning sign “Please do not put any object under the bed it will block the bed”. First it was clearly written in Swedish then under a small letter in English! I told the boys “Too late I have already made the mistake”. Akira wanted to cry, so I said “hey boys, let’s work together like a team. Who is the captain? Akira you are the CAPTAIN”. Two of us pulled up the bed and another pulled the bed. We tried around 20min. Somehow I called Eliane her phone was with no network. She was on 9th floor but I did not remember her room number. So I gave up and took few min of rest. After we decided to give it a try again. This time we succeed. We finally slept around 1:30. I was very nervous as I did not want to miss the arrival at Finland. I woke up a few time to go to toilet. Somehow I fell asleep early morning and I realized we were already in Finland and KPN did not miss the opportunity to warn me that I finally reached Finland with an sms around 2.49 in de morning. Akira saw Finland in the night since he was sleeping close to the window and he woke me up at around 3.00 to show the lights at houses. In the morning I took some picture since we were not allowed to get out of the ship.
At 8h morning the ship left Finland again, back to Stockholm. Rio and Akira went to the game room and played till our brunch time. We did have fun and this experience on the Cinderella ship will never be forgotten. Eat, play, dance, sleep on a boat and see a new country at the same time! What a great experience!
We are now preparing to come back to Netherland next week Tuesday.
Are you ready to give us a hug?
Peace ,
Eliane

Fun Stockholm

I can not tell it all! We have been at so many places in Stockholm, they are all beautiful and each of them have an impressive history.
On Wednesday we went to Vasa Museum. It’s a huge royal boat build in 1628 which first set sail on 10 August 1628 and sank on her maiden voyage in Stockholm harbour. It was found again after 333 years on the seabed in 1961. It was pieced together and now is restored with 98 percent of original materials. It is so beautifully decorated with hundreds of carved sculptures.
We continued our journey and visited the Nordic Museum and from there did a tour around the whole city with ‘hop on hop off’ buses and boats. We finished the day at Grona Lund, a sort of children playground where our boys had lots of fun, including in the aquarium with a ‘World of Frogs’. Thursday we visited the Nobel museum, the royal armory and the Incredible big Skyview ‘ Ball’. All the way to the top.
As I always like to learn new cultural of every country I visit, I did not leave Stockholm without learning the culture. So the last day in Stockholm we visited Skansen. Skansen is the oldest open-air museum in the World and showcases Sweden through its animals, buildings, farms and zoo with Nordic animals, and a lot of domestics animals still to be seen among the many buildings and farms at Skansen.
As last week I visited the Zuiderzee Museum, I was expecting to see the same set up of the buildings and everything around it. But it was totally different. First we started with another Aquarium, where we saw some animals, from there we entered a school which is 108 years old. The life was not easy that time as children needed to go to school one day and the next day they would then go to help their parents on the farm. There was one teacher at that school for more than 50 children between 7 and 13 years old. While I was sitting in those chairs which are so old, I kind of remembered my memory of my Primary school time. We visited many farm houses in the park, all made with wooden planks. They are very tiny inside but well organized. When we went out to a small square in a farmstead I saw a beautiful lady Stella, she was having small pieces of wood and old rags. She invited me to make a doll out of those materials. This was something I was good at when I was young. My Son Akira started making one but did not have a clue how to pull this together. He made a face on the piece of wood and I helped him to make an outfit for the doll. It was like I was traveling back in time when we used to use banana flowers or corn to make dolls and tie them to our backs like mothers did with us as babies! Showing Akira this piece of my youth experience made me proud! We went down from the hill on which Skansen is built with a cable -cart, carrying our wooden dolls with us. These are nice souvenirs from Skansen . I am glad we visited it !
Now ready for our next destination Vasteras.
Peace ,
Eliane.

Discover New World

After a busy weeks with International AIDS Conference in Amsterdam I finally get a moment to take a holidays with my beloved ones.

We started yesterday by visiting Zuiderzee museum in Enkhuizen where we learnt about the way the Dutch lived alongside the rough sea.
For example, the life of fishermen now many years ago, how they washed the cloths and how they dressed up which is totally different from nowadays. It was an amazing trip  and I enjoying learning the culture of every country I visit. Well I am living here for 11 years now and I am still learning until today.

The sky is the limit. I have always dreamed of seeing the World, visiting many countries. I am glad this is going the way I want it to be. This dream I am sharing with my beloved family. A few months ago I discovered Asia with my husband. Now, together with the boys, we are going to be in another new country, Sweden! We are very excited because it is going to happen today!
We have everything ready, our tickets for the Arlanda express, the Stockholm Pass. We are ready to learn yet again a new culture. Visiting muses, going on boat, many kids activities. The Stockholm pass will give many opportunities and we are going to take them all!

After a week, It will be the time to move to another city, Vasteras. I remember 2 years ago talking with my best childhood friend, Eliane, that one day I will pay her a visit. We would talk so much, bring back the many sweet memories of our childhood. We have been talking for a very long time on skype or WhatsApp by saying that we meet soon! That soon will start TODAY.
It will be great to finally meet Eliane in person again, after many long years ago. 1996! Now, can you imagine what will happen when we meet?
Make sure you protect your ears, because we will make a lot of noise. I will never stop dreaming.
Get ready Stockholm, I am on my way!
Peace,
Eliane

Positive and Gorgeous

On 25 July, the 11th edition of the Power of Love was held. It is in the words of Fred Verdult “de leukste dag om hiv te hebben”. A very inspiring yearly event about living with HIV and medication. This year’s edition was connected to the AIDS congress I talked about in my previous blog. This year it also had a positive flame torch relay through Amsterdam to the event in DeLaMar theater.

Let me start with the Positive Flame tour: I carried number 2003, the year of my diagnose. It was an incredible honour to have been a part of the tour where we marched together; 37 torchbearers (35 living with HIV from 1984 till 2017), but also Nobel Laureate Madame Francoise Barre- Sinoussi, who discovered the HIV virus in 1983 and my friend Timothy Brown, the only person in the World who has been cured of HIV, Bertus Tempert who is the Chair of Dutch HIV Association and a good friend of mine who handed the torch to me, Tim Kramer and Brenda Mugabona, the young inspiring activists and all other friends who I forgot to mention. We marched from the AIDS monument where we started and saw the opening by Femke Halsema of the tour, right next to the photo exposition “Living by the number” which includes a huge picture of me. From there we walked many kilometres on a very hot day through all Amsterdam.

Why did I march In Positive Flame Tour? It was an honour to be asked as a torchbearer, now living for 15 years with HIV! I wanted to rejoice together with all who made it from 1984 till today! Since I was told to buy my own coffin when I was diagnosed in 2003 and that I was not allowed to have children because I was going to die, this was a right moment to show my happiness of being a mother and alive! People living with HIV are still human, they are smart, have talent and are gorgeous! We did great work together. I loved the speech of Femke and the heart warming solidarity of Princess Mabel during the March. Their support in fighting stigma is very well needed by the People of Amsterdam and many other places  and we hope that there will be a big change in attitude toward people living with HIV in the Netherlands.

At the start of this year’s Power of Love event, I welcome all other torch bearers with African dance at the Leidseplein before they entered Theater DeLaMar. I did not know that everybody in theatre was watching my positive dance! My sons were there too and were very proud of mom!  During the event in theatre DeLaMar there were many interviews mixed with some artists performing. Like Belle Fleur and Perry Dossett . I loved the moment when all 37 torchbearers went on stage to sing Something inside (so strong) with Perry. Yes HIV has made me stronger than ever before. I would not dare to fight the Stigma around HIV if I was not strong. The song continues I know that I can make it. Yes I made it till today because medication works. Yet, a harsh reminder is needed as well: my cousin and her husband  did not make it till today... they died of AIDS as recent as 2015! I hope I don’t need to loose anyone else in my family because of AIDS.

We did it all together and I will always cherish this sweet memory of Positive Flame and the grand finale at the Power of Love. It was a real energy boost and a reminder for me to continue my mission: FIGHT stigma, EDUCATE and EMPOWER.

Till we meet again.
Peace,
Eliane

Global attention to my cause.

Last week was a busy period for me as a participant during the 22nd International AIDS Congress in Amsterdam where 15,000 delegates from all over the world came together.

First there was the pre-conference where I participated in the WomenNow2018 Summit, UequalsU as a community voice . Women are very much left behind. When it comes to U=U towards women and breastfeeding there is no clear answer to this particular issue and we know many women would like to breasfeed. Using my experience of not breastfeeding and my memories of myself being breastfed till late age, I still feel emotional about the times I did not have a chance to breastfeed. If U=U  can be applied to our women, it will be a great empowerment for mothers to spread the message easily.  U=U is a powerful weapon to end the stigma. For womenNow2018Summit it was about women’s HIV, Sexual and Reproductive Health and Justice. Young women shared their experience with gender abuse, sexual assault and they want to speak out. It has been very long for them to keep silent. Some experience of young women being unable to bear children because their uterus have been removed without consent, a practice still happening in many hospitals in Africa. We learnt to stand together and shout out loud for justice. We marched from the Beurs van Berlage till Amsterdam Centraal station and back singing and making the slogan “Women Now!”.

There were also many activities organized in the Global village next to the conference.To mention a few higlights:

PrEP as a prevention method: Women who use PrEP shared their experience which gave me hope that someday HIV infection is going to end if they would make PrEP available for everyone as a prevention. Talking about the ability to make the change, we learnt that women can do much more when they stand together and stand up and speak out: “ Nothing without Us for Us”. Here I also shared my story and I danced for them African moves and they were all so vibrant and we forgot we have been emotional about so many story! I felt good to bring back their smiles!

Stigma Experience bye Hello Gorgeous: I was part of the team of Stigma Experience. My role was “A guru” which meant I had to free a person from the agony of all the stigma and accusations that make you feel bad about being HIV positive. How did it work? You start by being in the doctor’s office for your test result .The doctor is very unfriendly, wearing gloves before even greeting you, even mentioning that is a precaution. You will hear many thing about what happens in case you are HIV positive. The talking is too long that you become nervous and want to hear your result to go home. Finally you get the result and the doctor asks you to repeat your name and say you are HIV positive. You really feel awful after this consultation. From the doctor’s white room you enter in a pitchdark room with a lot of sound, a beating heart and two persons on both sides of the room telling at you how bad you are for having HIV, blaming, scaring and accusing you. They make sure you leave the room feeling really traumatised and guilty of being HIV positive. Then I open the black door with a smile and you finally see the colourful lights. I welcome you and do a breathing exercise. When you start feeling better I can talk to you, make you smile. And I use my positive story to make you realize ‘life is beautiful, that there is a life after HIV diagnose. Using my talents of dance we close our conversation by doing a small African move with the song ”Nakupenda” which means “I love you”. Then I ask you to share my positive vibes with the World. You are free to go now! I am proud to be part of HIV stigma experience and helped as many as I could to break the stigma and taboo. We saw many different people from many different places, some from the US, Africa, Germany, Italy, Portugal, etc.

AIDS March “Toward Zero Together”: The AIDS March happened on Monday 23rd July in the afternoon when many AIDS conference delegates, HIV activists for all over the World and organisations working to fight HIV and  AIDS, marched together to give attention for Ending AIDS, towards Zero stigma, Zero discrimination and Zero Criminalisation, zero barriers to HIV treatment. As Stigma fighter I marched because I believe there are many countries including my own Burundi where people are still dying of AIDS. It was during the hottest moment of the day, but we were no cowards. We marched from Amstelveld to Rai. I marched with many people that play an important role in our community; from Princess Mabel, director  Louise from AIDS Funds Netherland , Professor Peter Reis , Bertus Tempert from Dutch HIV Association to Lilian Ploumen. We were the frontrunner of this march. It was great to show our concern and march Toward Zero Together. At the Rai we had a nice dancing session with many activists who cannot speak out in their countries!

What an event!

In my next blog I will tell you something about another event that happened in the same week, namely the positive flame torch relay and event... Stay tuned and speak to you soon.

Peace,

Eliane

Small girl, great dancer

Every year at the beginning of summer in my City Amersfoort there is a Festival called Struinen in de Tuinen.  Many local artists gather in different places to perform. I am always invited to bring people together with my African music, singing, dancing and storytelling, using my unique Instrument (Indonongo) made from cow horn.
I get different people of different ages and nationalities. People who love Africa, who have been in Africa for work, or have family members in Africa come to enjoy my show.

I have a new children’s show. Story telling: “THE DANCER PRINCESS.” This is something I introduced last year as I saw that more and more children were coming to the Indonongo show. Last Sunday during my first performance there was this little girl. She was so happy, and absolutely loved my music. She danced like she was part of my story: “The Dancer Princess.”  She was not shy. Her mother was dancing too and after the show she came to thank me. 
She said that her daughter did not want to go anywhere else – just to my show.  Her mother is from Hungary and her father Dutch. But the way she picked up my moves reminded me of myself when I was little. I used to follow my big brothers and sisters to parties in our neighbourhood. I would dance like it was my last day on Earth. I would smile at everyone until they smiled back. This little girl brought back sweet memories of the old days. I was full of joy watching her moving like me. After all, I realise I never changed who I was before and clearly HIV did not change my personality!

The day ended very well, with some mothers coming along to tell me how much they liked the show, asking when I would be performing next. I told them about the International Aids Conference coming to Amsterdam, and that I would be performing in the Global Village at 16.30 hrs on the afternoon of 26th July.  Sharing my culture and educating people on HIV and AIDS, fighting stigma and using my talents in front of people from all around the world.  What more could I ask? I am more than happy!
Peace,
Eliane

Has anyone found my Red Ribbon?

As the International AIDS Conference is coming to Amsterdam, media attention is focused on HIV and AIDS, sharing stories about people living with HIV in the Netherlands. As an HIV Activist, I was invited to share my story on how I reach other African people, giving them information, and convincing them that they should take an HIV test, or continue to take their medication regularly.

Last Thursday from 9h15 till 11h15 a journalist and cameraman from NOS TV (Nederlandse Omroep Stichting - the 24:7 news Channel in the Netherlands) were at my home making a documentary to be shown in the week of the AIDS Conference in the hourly news broadcasts (Nieuws Uur).  It was a very good experience working with them on my story, and I hope that it will serve a good purpose, reaching out to the community and helping to break taboos.

After shooting the documentary I had to rush to my next appointment where I needed to talk with the Project manager for Stichting Vluchtelingen Ambassadeurs.  I was still wearing a beautiful African dress, with my favourite Red Ribbon; I did not need to change as I went by bicycle to Emiclear.  We had some good coffee sitting outside as it was a warm day. While we were talking an old lady came along and said: “You look lovely in that dress!“  I said thank you.  Do you need a hug? She said: “Yes please - I am so happy just looking at you!”  So I gave her a hug. We continued the conversation and it ended with positive news, which I will share soon!
Then It was time to run to school to pick up my kids. Life is really busy here in the Netherlands - no kidding, I then went straight to my Pharmacy to pick up my medication, and then straight to the supermarket to buy food for the evening meal.
When we had finished our dinner, I went to take my dress off, but then realized that I had lost my Red Ribbon. My husband asked me to describe every place I went to.  We took a walk together and went in different directions, along the route I had taken on my bike, walking together side by side and talking. Every time we saw something red, we rushed to see if it was my Red Ribbon. We didn’t find it.  I was so sad! My husband felt sorry for me and went on the internet and ordered two more ribbons from the site at Aliexpress.  Now they are on the way to me from China. I am happy to have found a solution, but I still would love to get my original ribbon back, as we were shared a lot together.  So if you find my Red Ribbon, would you please get in touch with me?
Thank you
Peace,
Eliane

The night I had to run away

Even now, after 11 years, I still get a lot of questions of which refugee camp I lived in first when I arrive in Netherlands. My reply is always none. Love brought me in Netherlands. Although I did not come as a refugee, it does not mean that I have no idea how it feels. Trust me being refugee in your own country is even harder than crossing a border!

De nacht van de Vluchteling (The night of the refugee) was yesterday night, 16-17 June, and it was an unforgettable experience for me. I walked 20 km that night for the first time in my life. I had been  training up to 15 km. It was a big challenge. Many people walk in group as I was walking alone in the night, it made me think back to that Night in 1993 when civil war started in Burundi. We had to run from my village Murira, hiding between the trees. We slept in the bush for 2 nights, then we finally made it to the centre of Gihanga where we could be protected by Soldiers. That is the day I finally realized the hate between Hutu and Tutsi. As my parents raised me to be a Burundian citizen they never though that one day this war will crash! Love had won their heart as they did not educate me with a hate for different ethnic groups. And still in our family we are mixed. It were very painful nights, I did not know how the future for me would look like. Yesterday I saw in my thoughts the light from people searching us in Bush and singing the song ”Tinga ababaya no mu bido” which means search the bad people, even in Bush.

Right that moment I heard singing in a group in front of me, it was not my Kirundi language, it was Persian from Iran. I joined this group of Iranian refugees as it was very cheerful. They explained the meaning of the song we were singing: “It was about a father who said goodbye to his daughter in the night before he joined Heaven“. The song is 60 years old and in Iran it is very well known. They asked me to teach them an African song. I taught them “Amahoro meza “ which means Good peace, as we both want peace in this World, especially in our countries.

We took our first break at 10 km where they put our stamp. We share food (Iranian and Dutch snacks). We continue to the finish. While walking one girl asked me why I am wearing a t-shirt written HIV POSITIVE. I responded that I like to sympathize with Refugees who have HIV. She asked why do you that? I answered that I am myself HIV positive. It has been a hard time to talk about this with the people I love. I know that it is a big taboo in may countries and many PLHIV are very isolated because they have no one to talk to. I imagine a life of a refugee in a camp where you are dealing with war trauma  and still on top deal with HIV. That is a big burden! People who are not in a camp already still have difficulties to talk about it or seek help, Refugees with HIV need to be helped as well. Even the one without need to have information. A lot happens in refugees camps at least in Africa where women and girls are very vulnerable and have a big chance to get sexually assaulted during their exile. In a camp they built up a lot trauma and finally to hear they have HIV, that is devastating news! So I wanted them to know they are not alone!

She asked many questions relating to HIV infection, how it spread and how come I did not give it to my children. She had never done a HIV test and she has been having a lot of sex without condom so she was scared. So I advised her to do HIV test, if she test positive she takes medication and will live a health life. I explained U=U, Undetectable equals Untransmittable, a message that gives confidence to an HIV positive person. She does not need to worry about future dating but more important for her is to know the HIV status of her future partner. She was very convinced to do the right thing in order to plan her future without fear! I realized that I have two prices: winning by finishing my 20km walk , and informing and empowering another citizen of the World!

I cannot forget to thank all people who believed in me and donated for this walk, we did it together. Thanks to all Nacht van de vluchteling walkers, we raised 1.6 millions euro together that will be well spent to help all many of the 65 million refugees in need!

Peace,

Eliane.

Shine with my Red Ribbon

Sunday the10th of June my Choir the Hallehuiskoor had a 33 years jubilee concert at Theatre Lieve Vrouw in Amersfoort.Well I am not that long in the Hallehuiskoor but one thing I liked about this Choir since I began in September 2014 is that no one judged me when I told them my HIV Status.Everyone accepted me as I am. We are all as One people and we enjoy singing together!

Yesterday was a big day for all of Us as we spent the whole past year rehearsing for the concert.It was full variety:17th century English, Netherlands songs, Germany 20th Century songs, English pop music, and Mediterranean songs.

The singing was mixte with acting.We did nail down the performance on solo during Mediterranean songs where I played solo together with the tallest man from our Choir, it was great and feels special to sing in Italian (Pizzica de San Vito).

After the concert we met our friends and families who gave us many compliments .Some  came personally to shake my hands and give the compliments . A daughter of my Choir colleague together with her son(12years old) approached me and said "We want to share with you that we enjoyed watching you singing, we were your fans." And when I was walking around looking for my best friend Elise, another couple gave me again the compliment and said "Oh you can sing so nice and you were shining on the stage, our eyes could not look somewhere else but at YOU!" My heart was full of joy!

Our outfit was different shades of blue, grey,and red as accessories. Some women had flowers,necklaces, shawl,or bracelet all in red.
I had my beautiful blue dress,and as red accessories my RED RIBBON and mixed red and blue shawl ,red braclet and red ring.   It was like I worked at a Dutch Airline. As I was talking to some people after the concert I got a question about my Red Ribbon. One woman asked me "Is that for breast cancer?"I said no madam, this is for HIV and AIDS. She continued to ask me why I was wearing it. I responded that I wear it to spread the awareness. She continued ,"So you have lost someone with AIDS?".I said yes,and I am myself HIV positive. She continued ,"But you look great and you were shining out there." I responded to her that People with HIV are like everyone else and can do great things. I asked her if she could tell based on looking at my face during my performance. She said no.

UequalsU used as support

I asked her how much she knows about HIV .She said very old information from the 1980s. From that moment I knew I needed to spread the U=U , the very powerful message which can help to reduce the STIGMA. Madam I would like to share some update information. Did you know that a person with HIV ,who is on treatment 6 months with an undetectable viral load  cannot pass on HIV? Undetectable = Untransmittable. It is scientifically proven  and officially launched since July 2017.
I am happy to share this good news with anyone who is not aware of it! People living with HIV can fall in love , get married a and have healthy children without worrying of being infected if the one with HIV stays undetectable! For the changes nowadays people are suppose to be supportive towards PLHIV because in the end we are all HUMAN BEING.

She thanked me for informing her and said" Keep on shining and helping other people, I am now empowered and will sure share your information with hope that stigma will melt down in our country(The Netherlands)and in the World."

we need to keep our message moving.Every time I have  a chance to talk to people I inform them with no shame of being HIV. In end they don't see me as an HIV POSITIVE WOMAN ,they see me as a beautiful talented woman!
I will keep shining with my RED RIBBON and wear it with pride! Won't you?

Peace,
Eliane.