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