You people

I am born dark brown although many people prefer to call my colour black. OK, then I am black! Do you have a problem with that?

 It’s shocking how ignorant people remain about racism! In a week I experienced two cases, and I will share the most bizarre example here as it happened in my neighbourhood with someone I knew for over 10 years and with whom I did share joyful moments in the past. Until recently we always smiled at eachother, but a few days ago he finally removed the mask and showed his true self.

My friend dropped by and parked her car along the street in a way that we see many times and is totally legal. Despite this, he walked up to her and ordered her that she should not park there. Meanwhile across the street another car was parked which obstructed a footpath and access to a public wastebin. So my friend asked him if he also ordered that car owner to park somewhere else.

The owner of this car got away without a reprimand

When she told me what happened, my husband and I were very curious to find out why he ordered her to remove her car. So we decided it was best to have a neighbourly chat about it. I went to his place and explained why I was at his door. Immediately he started shouting ”I told your friend not to park there. She said she would be gone for 5 minutes but she was gone for an hour”.

I asked him “Do you tell everybody who parks there, not to park there?” And he said that he doesn’t talk to others. So I became more curious and asked why he decided to confront my guest today. He responded “Are you accusing me that I stopped her because she is a black woman?” I told him not to put these words in my mouth, and that I didn’t mention her skin colour. I also told him that it would have made  sense for him to talk to both cars owners which made him more angry, saying “You people make something big out of such a small thing, you are making an elephant out of a mouse. I am not listening to your nonsense. Does your husband know what you are doing to me?”

As I felt he now tried to shame me, I responded “Wait a minute, what am I exactly doing to you? I came to talk in good faith, but now you seem to turn this into something else. I am not hiding anything from my husband. You can go and ask him yourself if he is aware of what I am doing”. By now he was furious, telling me to “Go away with your nonsense!” before slamming his door.

I was left in shock as I respected him for 12 years. His decision to deny me the opportunity to explain how I experienced this situation, finally showed the real person hiding behind this smile. Looking back at what happened, to me it seems that he had been waiting a long time to share his true feelings about “us people”.

No doubt that one day he will understand that by denying “us people” to share our experience he is trying to silence or shame us into not mentioning the obvious racism that we experience so often. But if I see wrong happening, I will not be silent and continue to speak up.

Peace,

Eliane

18 years in 18 moments

This week I ‘hacked’ the #hiv2020online instagram account for 24 hours. I decided to share my 18 years journey of living with HIV in 18 posts on their storyline. Here you see 2 of them and soon you will see more.

Using the power of Instagram, I shared 18 pictures of moments that meant a lot to me. Pictures are very powerful: They keep our memories intact, they are reminders of what happened, and they can trigger emotions. But most importantly they tell me why I must keep fighting HIV stigma.

So telling my 18 years HIV journey via Instagram storyline was a challenge as I relived sadness, but also joy and empowerment in my fight against HIV Stigma.

Now that I have 18 defining pictures of my life with HIV so far, I see more clearly that my efforts have not been in vain! I rediscovered my Joy and my Talents in life, and my dream for my next 18 years with HIV is to realise a World free from HIV stigma and AIDS deaths -related. It is possible!

Let’s fight together with Love and compassion!

Peace,

Eliane

Rollercoaster

Dear specialists of all my fabulous diseases,

My life has been quite a roller-coaster the past weeks, so in this blog I would like to express myself and share what I have learned.

The problem started 5 years ago when I developed pain in my chest and I was given anti blood clotting medication by my GP. Then, the cardiologist told me to stop it because, according to her, my heart was healthy and it was because of the stress of losing my brother. I stopped and a week later on my way to London for holidays I got a heart attack at Antwerp station on 3 August 2015. In the Hospital in Antwerp they did a lot exams and told me it was caused by a blood clot. So they put me back on medication and the pain in my chest was gone. I lived without fear of having a heart attack. 

Last year during the summer of 2019 I started having heavy menstruation and it went on for 3 weeks non-stop. I even collapsed during a flight back from holidays and ended up at the emergency room at Schiphol. A place where by the way I was mistreated by the medical staff the moment I told them my HIV status. They accused me of putting in danger other people’s life in the plane because of my bleeding and I was supposed to stay away from travel until it was over.

But the bleeding simply did not stop, so I went to my own hospital where I was told I had a fibroid in my uterus. Keeping me on the same medication I continued bleeding heavily every month. But at some stage I lacked so much blood that I ended  up in hospital for a blood transfusion at the beginning of 2020. Still, no changes to my medication.

Then, in March this year I visited my cardiologist and he told me that I didn’t need to visit anymore for regular check-ups, only to see the GP four times a year to check my blood pressure. He sent a letter to my GP with an updated medication list, including the anti blood clotting medication. By then I already told my gynaecologist my family history of my two sisters who had the same problem. She told me that if the bleeding did not stop, that my last option, after trying a new anti-conception called mirena, they would consider removing my uterus. My heavy bleeding never stopped since it started so it became a chronic problem to me. And so I survived through most of the summer.

Three weeks ago is where the communication problem seriously started. As the bleeding continued, I was now anxious to hear the gynaecologist’s plan to solve my bleeding problem. Knowing what she told me before about removing my uterus, I was in shock when she said ”Madam, there is no need to remove your uterus now that Mirena does not work with you, and you can stop the anti blood clotting medication. After that we will see how things will be going without those two“.

I was in shock to hear I had to stop my anti blood clotting medication. I immediately recalled what happened 5 years ago. So I asked why should I stop it and she said that she had a discussion with the cardiologist and they concluded that I never really needed it. To me it was so tough to hear from the gynaecologist to tell me to stop medication that I have taken for so long. To me, this seemed just for the purpose of solving my bleeding without really considering my complicated story of heart failure and family history.

And since she informed me at the end of a Friday afternoon there was nothing I could do anymore but to stop the medication at that moment. So you can imagine how scary this idea was for the whole weekend. Meanwhile my pain was killing me and I could not wait to call my GP on the next Monday. And here came another surprise… My GP was not informed by the hospital for me to stop the anti blood clotting medication, she did not receive any update from the cardiologist or gynaecologist at all. So there was no way for her to tell if it was good or not and she advised me to call the cardiologist for him to explain.

So now I tried to reach the hospital to speak to my cardiologist. They said this was not possible as he was on a holiday, so they gave me an appointment for a telephone consultation for 2 weeks later. Can you imagine? Me having urgent questions about why my heart medication was stopped and having to wait for so long? I was angry, felt stressful and had panic attacks in the night. My pain was unbearable. So desperately I approached my pharmacist and she called the hospital to find out how long I would stop. The answer she got was the same, “Stop it, she never needed it”. To me I could not understand why the cardiologist never told me himself in march this year when I visited him, and suddenly my gynaecologist  is taking charge of these two diseases?

So, the last 3 weeks I have been calling medical professionals every single day; Two specialists, my GP, and my pharmacist. So often I could not reach them and they would promise to call me back. I was always holding my phone in my hands as I feared missing a call. And so often they didn’t call back at all on the date agreed. Every day I have been crying, scared in the night, and I don’t trust myself anymore when it comes to living my life…

So, where do I stand right now? By now I learned from the cardiologist that the gynaecologist urged him to stop my medication, but that he would have preferred me to stay on the medication to reduce the risk of a heart attack if there were no problems with my bleeding. Meanwhile, the gynaecologist still does not have an alternative, and told me that I have to make a very strong case (myself!) for her to take out my uterus. So I still don’t know what is going to happen.

Dear specialists, I know that each of you is doing a good job for the benefit of your patients. But I would like to ask you to communicate better between yourselves and do so on time. And please keep my GP informed at all times! More importantly, you are dealing with a human being, so make sure you explain very clearly what is going on. And  please listen to the concerns of a patient without ignoring  his or her family history. The pain I went (and still am going) through I do not wish to any other patient.

Together we are strong! Work together for the sake of a patient with multiple diseases.

Thank you

Peace ,

Eliane

The living beauty flower

Deze afbeelding heeft een leeg alt-atribuut; de bestandsnaam is eb-wall.jpg

Dear person living or affected by HIV and AIDS,

It has been while and I would like to check on how you have been doing. It says that Life is like a disco ball, no matter how the music changes, you just keep on dancing. Life during the Corona era has taught us many things, and we keep on adjusting the situation from time to time. During my holidays in Berlin where I visited many places with my parents in law, my kids and husband we saw many beautiful places, some of them bring back some sad memories. But is OK we call it “LIFE”.

I was impressed how people in Berlin quickly adjust to wearing facemask everywhere in their lives. While I was used to wear a facemask in public transport, I had to train my brain immediately to use a facemask in supermarkets, stores or when you leave your seat in restaurants. It was a matter of discipline and people obey the rules.

I try to find beauty on every occasion. So when walking in streets or alleyways I would look around and find a lot of graffiti. Some were inspiring, like seeing a beautiful picture of Anne Frank or Obama. There was so much art on the streets of Berlin and they all respected each others space on the walls. It is very respectful and makes every artist equal!

I visited the Berlin wall for the third time now and every time I always find very beautiful new paintings. It’s an amazing experience and kind of helps me to relax by looking at all those graffiti pieces of art. In the neighbourhood close to my hotel, while on a small walk I found a beautiful living painting, I call it “The living beauty Flowers”. This one really inspired me as to me beauty is defined as a combination of different qualities such as shape, colour, and integration with the surrounding. But, beauty is more than what you see. It is not just about how you look on the outside, it is even more about who you are on the inside.

“The living beauty flowers” to me symbolises this inner beauty. My dear person living or affected by HIV and AIDS, to me you are all my living beauty flowers . Don’t let anyone tell you otherwise. May these beauty flowers inspire you to be the beautiful person inside.

Peace,
Eliane

HIV 2020 Conference

Hello Community Reclaiming The Response,

Yesterday the online HIV 2020 conference officially started. The past few weeks I have been working really hard with a dedicated group of people on my art performance which went live online today. As you know, I was invited to show this in Mexico, but as it was not possible to travel there, yet my art project was selected for an online exhibition instead.

I am so proud of the 7 minutes film called “A HIV Journey – A Story of Hope“. In this film you will see me perform my beautiful poem “It’s my time to fight stigma”. I hope you will enjoy it!

Peace,

Eliane

(C)overt discrimation?

As an African woman, having a white Dutch husband and mixed kids, I want to share my experience towards Black Lives Matter. In 13 years in the Netherlands, I have come across many facets of discrimination. I mostly talk about issues relation to HIV stigma and discrimination, but today I choose to share this experience.

Not so long ago, I used to take my youngest child to school by bicycle. Crossing a busy road for a young child is dangerous so I would put him in my transport bike and bring him to school myself. Like many other parents I would use a narrow path as a shortcut to school with our bikes. Along this path, people from the neighbourhood would also be walking their dogs.

I had already been using this path for many years when suddenly a woman, walking her dog, told me I am not allowed to pass. But a white mother, also with a child on her bike, just passed and the woman said nothing at all. So I asked “why am I not allowed to pass?” She said “because this is a walking path”. I replied, “Well ,we are both breaking the rules as dogs are also not allowed to walk freely and shit here”. She was furious.

The next day, she stopped me and said she was going to report me to the police. I told her very calmly ”Look around, if you are going to call the police, make sure you clean up the dogshit, because I will tell them it is from your dog”. She said that she pays taxes to have a dog (forgetting that she should still clean up his shit), so I told her that I too pay taxes to use the path and I will tell the police to ask her how to explain the tons of dog shit along the path. I reminded her “Don’t be confused, I am Dutch and I know the rules and I am not afraid to talk with police”.

Two weeks later, she confronted me again, now with an old man. He said “You never went to school, you cannot read the sign. You are not allowed to use this path”. I replied that I can perfectly read the sign and that it says that you can walk here and that when walking with a bike in my hands, I am not breaking the rules. But that I know that a dog needs to be on a leash and that his shit needs to be cleaned. So I challenged them on who is breaking the Law right now? He was not happy with my answer and clearly did not expect me to stand up!

A week later, they were again both waiting for me and now blocked my passage. I thought that they would just let me pass. The old man said “You again? You are not allowed to pass here”. I asked why and made it clear that I am not going to use any other road. The old man then yelled at me “Houd je bek zwartkop (Shut your mouth, blackhead)”. Then he pushed me to the ground which made me almost fall into the stream along the path. When I got up I grabbed him by his shirt and looked into his eyes, and all I could read was his hatred for black people. And I already had done my research! Two white mothers, using the same path, never heard anything from those two, but one other black woman had exactly the same experience as me. 

When the police choose to believe their white citizens… 

I called my husband to tell him I was going to report these people to the police, so I took my passport and went to the police station. Guess who I saw coming out of the police station? The same woman who pushed me, she went to report me to the police. I became curious of what she could possibly have told the police as I had not committed any crime.

So after telling my story, the police officer told me “I don’t believe your story, you are the criminal”. I asked “why? what did I do?” He said “you had a knife and you were threatening this woman who you are reporting now. We know everything and stop acting like you are the victim!” I could not believe how I had transformed from a friendly mother being threatened and pushed to a criminal. I told the police that I have a witness, and that another dark mother had been experiencing exactly the same. The police send me away, and told me that my accusation had no value. So, the next day the other mother and I went to report our case again and the police responded that they will investigate.

Meanwhile my husband helped me to make complaint online through the anti-discrimination agency. Next thing I got was a visit from an anti-discrimination officer, offering me counselling as a victim. I told them that I don’t need counselling, I need Justice.

Then one day, a police officer showed up at my home. He told me that I should meet the old man, share a cup of tea at his home and talk about it. Why the hell would I share a cup of tea with a man full of hate, in his house? What would the police do if he pulled a gun and finish me in no time? And why would I go to his house, and why would he not come to my house? The police officer replied that he may feel comfortable in his own house. I said maybe he has a hidden agenda to kill me in his home and tell you that I attacked him. The police officer then said that he would check with him to meet in a neutral place. I said that I would only do that if the police officer would be available to look after me.

While waiting for the police officer to come back with a solution, they surprised me again by showing how much protective they are towards their white citizens. He came with an instruction for me to use another way to bring my child to school or wait to use that path until they are done walking their dogs. I looked the officer into his eyes and said “Listen, for a very long time now, they harass me and the other black woman, and they allow white mothers to keep using this same path. I am not going to change my route because you want to protect those people and their dogs. I want you to go back and tell those people that next time they see me to run. I will not tolerate them bullying me since you police fail to protect me and choose their side. If all mothers are going to stop using that path, I will stop, but if it’s only me who needs to change, no way. If they ever come close to me I will punish them myself and then you will come to take me to jail as a real criminal. Just tell them to wait until I have passed or go walk their dog in other place. Don’t come back again to ask to talk with them, I will teach them myself how to respect me.”

The next day I went to school on that same path, and when the woman saw me she immediately ran into another direction. My son noticed and said “Mom, she is now afraid of you, why?”. Well, I guess the police did at least one thing right! So now this woman knows that I am not a joker when it comes to discrimination, and the old man? He never dared to look into my eyes again.

Up to today, those white people got away with their violent and discriminatory behaviour. And I am still wondering why the police so openly chose the white people’s side and chose not to believe my side of the story. Did the police really expect me to keep my mouth shut like I was told by those white people? No! Because Black Lives matter everywhere!

Peace, Eliane

Stigma at times of COVID-19

Before we even heard of COVID-19, people living with HIV or AIDS were already facing stigma and discrimination as I experienced and shared with you regularly with healthcare providers throughout the years. Many more people started facing stigma when COVID-19 came along in many ways, and this made things for people living with HIV or AIDS even worse.

I would like to share my experience during this period and how I overcame the stigma and help the healthcare provider to open up her eyes and take into account what her actions can mean for others. In January I needed to do a CT scan and they happened to find a something on one of my lungs. For my entire life I never had to see a pulmonologist (lung doctor) before, so on 12 February I met one for the first time.

I was nervous and curious the same time. I am used to visit hospitals for many checks up and doctors always welcomed me through a hand shake. It was at a time when in the Netherlands there were no rules yet on how to behave in these different times. So we all still went about our business as usual and every doctor I met was still shaking hands. So I had quite a big expectation of warm greetings from this doctor since it was our first meeting.

When I gave my hand, she rejected me by saying “Oh no no, I don’t shake your hands, there are many viruses around. I don’t dare to be infected!“ I immediately felt confused and started thinking and asking myself what she meant by many viruses? I don’t have Corona, I don’t have flu, the only virus I have is my HIV. Since she read my medical file she knew what kind of virus I have. So this made me start doubting her words. Why would she talk to me as if I am very dangerous to her? Did she mean that my virus would jump to her by shaking hands? I really needed to find the reason behind her behaviour.

A week later some hospitals started introducing information on not shaking hands. But there was still not yet a strong medical protocol in place. So I went back to see my HIV Doctor, and this was also a new person as my previous doctor had left recently. So on 28 February I met her for the first time, and I was not expecting to shake hands. But, when she introduced herself, she said “Hello, I am not suppose to shake hands but since this is our first meeting I make an exception and I feel comfortable about it”. This is when I explained my experience with the lung doctor and how hurt I felt. So, she advised me to better talk to her again.

Afterwards, this whole episode with the lung doctor kept on playing in my mind; how she did not show empathy during our conversation, and how she also failed to really answer any questions on the diagnosis. I went completely crazy, and I decide to see my GP first to explain the results of the scan better to me. My GP explained very clearly and then I shared with her how I felt about the lung doctor, and she also advised me to go back and talk.

I waited until May, and I finally got an appointment this week. I was very calm, and not angry but curious. I told her that the main reason I came back was to talk to her how I felt last time we met. I asked her what she meant by saying “Many viruses”. I explained that by the time we met I did have only one virus, HIV. That sometimes I get discriminated in hospital because of that. She was completely in shock and said “I am sorry I meant to say flu, corona virus, not HIV”. then I said “Well, you should have been specific, because telling somebody with the HIV virus that you don’t shake hands because of many viruses, from experience I immediately understood that you meant HIV virus since I did not have corona, or flu”. She said 5 times sorry, “I am sorry I was not aware that people can get it wrong when I say virus. But you are right, I should have said flu or corona”.

I explained that we often face stigma as some people still believe they can get HIV virus by shaking hands, that what she said really bothered me. But that I did not want to accept this, and I needed to find out what she meant. She thanked me and said “You are a strong woman to come back and talk about this with me, you taught me a lot and I am going to use it with the next patients”. I told her that I did not do it for myself, I want to prevent this from happening to other patients like me. Not everyone will dare to challenge a doctor on this, especially my Africans migrants. And they will go home and feel bad, confused and get depressed by this. But I choose to clear my path before I move on. I need us to be clear and make sure we understand each other.

An important lesson learnt for her is that language matters. I am sure next time she will take into account which words to use when communicating with patients like me so then they don’t feel offended!

Peace, Eliane

International Women’s day: Challenging HIV stigma

Today I was invited to celebrate International Women’s Day in Culemborg. Foundation Intercultureel Vrouwen Culemborg (DIVC) organized a party with the theme ”Freedom”. The event started at 13h with a speech from the municipal councillor of culture. Then a poem read by a poet from Culemborg. Throughout the programme there were many different performances from different cultures, choirs, bellydancers and fashion shows.

I was there to share my story: HIV and Freedom. This was a story of living through 17 challenging years with HIV. You know that I am always ready to take any opportunity to fight HIV stigma. In a way, these 17 years have also been a walk to freedom and that is what I wanted to share:

In short, my story covered three stages towards freedom:

  1. A new beginning when I went on ARVs and was able to fall pregnant and have healthy children
  2. Out of the closet: When I finally was open to speak about my status
  3. HIV stigmafighter: Adressing inequalities and stigma around HIV

I stressed that you cannot gain freedom without a fight. And that is why I am a stigmafighter. To fight the stigma we still face everyday, lift people out of isolation because when you are hidden you are not free!

After my story I ended with my poem the mask. People approached me with compliments and told me how my story touched. Some women said they never talk about HIV at home, and seeing me being so open about HIV and sharing my ups and downs, and my success so far, they told me “You are a Superwoman”. We finished with a very inspiring female DJ from Morocco. Wow, she can really sing and DJ at the same time. All women from different cultures went crazy on the dancefloor. Any song she played, we just danced and were happy to be together.

Us women face different challenges in our life. Even when we think we are in a free country, we still need to fight for our freedom. I am glad I was able to inspire more women in Culemborg. For those that were there: You are all my Superwomen!

#EachforEqual. Happy women’s day to all of Us.

Peace, Eliane

A true warrior

For being a warrior there is no need to be in a war of guns and fight until you win. I have been in many different wars with and without gunfire. I am still fighting one long war, which I call the “STIGMA WAR”.

I am a warrior in the war against stigma, discrimination and ignorance about HIV. In this war I break the silence and the shame about being HIV positive. And I am ready to win this war because I fight it with compassion.

Yes, I am a warrior in this life full of challenges. If I would feel pity for myself, hate my life, it would not have made me feel better. But when you love life, it will certainly love you back! So I choose to do what is best for me. Breaking the silence, fighting for my rights is the best thing I can do. And I continue to do so.

Please join me in this war against STIGMA and DISCRIMINATION. We will win. Let us put our energy together and break the silence. Let us speak out and loud. Let our voices be heard!

This life with HIV has many challenges. It is like the weather: There are rainy days, cold days, warm days and you adapt to any weather condition. It is the same when living a positive life. Faced with any situation, we have to find a suitable solution. If I turn around and look back at everything I have been through, I clearly see that I am a warrior. And I am not afraid in this fight, I am not afraid of what people may say or how they may treat me. I broke the silence. And in the end the victory is on my side.

I just want to breathe my emotions.
I just want to smile like the warm sun.
I just want to laugh all day like running water in a river.
I just want to share my victory with the world.
Forget about the time I used to cry like summer rain.
Forget about the time I could not choose between right and wrong.
Forget about the time I was silent because of fear of being hurt.
Forget it. It is over now; I just want to breathe my emotions!
From now on I will joyfully sing like a morning bird.
So that people all over the world hear my voice saying:
“Hey you, stop the stigma!”
I am a warrior in a war without guns.

Peace,
Eliane