Sunday, 17 June 2018

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!



Monday, 11 June 2018

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?


Saturday, 9 June 2018

The Fear of dying asleep

Hello, the past few days I have got my ups and down with my diabetes, Although the Doctor has increased my dose it seem to be getting worse and I am confronted with the fear in the night during my hypos. So here I would like to share the journey of the past 19 years with you!

Many years has passed  since I was diagnosed with my diabetes on 04 June 1999. It was a very difficult time for me to deal with it in Burundi. First I stayed for ten days in hospital on intensive insuline. I had to learn how to inject myself with insuline. Back then there was no rapid finger self test, I had to go to hospital every 2 weeks to give blood for a check up. It was a terrible moment, because everytime I travel from Bujumbura City after my visit to the specialist I  needed to take home the insuline to Gihanga(20km), on ice to keep it cool! Can you Imagine in 35 degrees  what could happen to my insuline? Sometimes it was already almost cooking in warm water, no ice anymore. I would then get off my bus and Immediately take my insuline to a bar where they had a fridge and they would put my insuline between cold beers and soft drinks. I am still greatful for their help! In the evening I would go to the bar and inject myself. People would make a joke about me saying "This girl got a disease for rich people " or " You are suppose to be very old to have diabetes". I would then walk away with tears, but no answer to give them. Because from my culture old people always have their say, you cannot disagree with them!

I had a very strict diet, I had very limited choice when it comes to the food we eat in my village. Rice, ugali, beans, casava,  green banana, all those I was not allowed to eat them. I often went in Hypo because of Insuline on an empty stomach. At some stage I did learn how to cope  and things went beter.

But I am growing older and it seems like it is getting worst. I try not to go in Hypo but it keeps on surprising me! Last week my doctor increased the dose from 850 mg of Metformine to 1000 mg twice a day. The sugar went higher during daytime, 18,5, and then drop in the evening to 3.2. It happened often that I went to sleep with fear that I may not wake up next morning. Am I supposed to be afraid of dying? Well, I want to have a chance to say goodbye to my beloved ones when I am 100 years old!

I am keeping my positive spirit and live a healthy life, definitely I am not letting Diabetes ruin my happines, I have a very exciting life ahead of me because my God has better plans for me!


Friday, 1 June 2018

The Power of Peer Education!

Open about my HIV status was not a bad idea at all! Although many people still find difficult to talk about their status to their close family and close friends. I understand it very well because stigma around HIV and AIDS  is putting everyone onder pressure. Let me tell you how helpful it can be when you are open. You become the voice of the Voiceless. When you share your story of living with HIV with someone who just diagnosed, you change his or her life!
I don't regret to be public open about my status on social media because  I help many people by counseling them online. People come and ask questions, we support each others and I make them feel they are not alone in this fight!

I am excited to share the beautiful story of a woman I supported the past 2 years. I got into contact with her as a buddy via facebook messenger. Why because she went to Psychologist to get help and he did not manage to help her. She wanted to kill herself.He had a Hello Gorgeous magazine where my story was written and my beautiful cover picture. He said go and look for this woman on social media and she may help you. Why did he send her to me? He knew if I would meet her that her life may change.

So when the Buddy of that woman contacted me she explained the situation and I felt I needed to offer her my support. We met at a train station for the first time and we talked about 2 hours. The very first thing she said is that she wanted to die, this disease is terrible and she cannot live any longer. I listened to her whole story very patiently, then I asked if she has medication. She was already on treatment. She wanted to have  a baby so then she can not feel alone.

When I told my HIV story from beginning and ending with telling her that I have 2 beautiful sons with no HIV, I saw her face changing, she started smiling. The Idea of killing herself started disappearing. She asked many more questions relating to have baby.

Her biggest problem was that she did not yet tell her boyfriend about her status. We discussed for her to take time and be honest with him about having a baby with him. I explain U=U. If she is undetectable she cannot pass it on to her boyfriend. The best option is to let her boyfriend do a HIV test before they have sex without condom. I said If you tell him after you are pregnant he will surely do a HIV test.If you have bad luck he alreay has got it somewhere in the past and he will blame you that it was you that infected him while we know you are on treatment more then 6 moths. You don't want to end your relationship like that. Be open to him and if he really love you he will do whatever it takes to be with you.

So she took my advice wisely and she told him. He stayed with her and she fell pregnant. They received a baby boy and the result came yesterday, the baby is HIV negative. We were celebrating this new chapter of their life. The father is very happy to see the mother and son healthy. Their dream has come true! For me it is my glorious month. I wanted them to be happy together and live their life at fullest!

What can I say, it's the power of peer education! Knowing that you are not alone out there! Make you understand that HIV is not the end of your World!
Peace ,