For World Kidney Day 2019, we are putting a spotlight on kidney disease and the struggle of living on dialysis. Below is Belinda Otas story. Belinda Otas is a journalist, writer, cultural critic, an independent blogger and Deputy Editor of the New African Woman. She has contributed to The New African Woman, New African, The Africa Report, Zam Selamta, Wings and Under The Influence magazines, Equal Times, Al Jazeera, CNN and BBC News online. Belinda was a news and social commentator on Monocle Radio’s – The Globalist, on African current affairs between 2012 and 2013, and has appeared on the BBC World Service NewsDay programme.
How did you end up living on dialysis?
This is my second time living on dialysis. The first time was between the ages of 16-to-22. I had my first transplant at 22, and it enabled me to go back to university, work and do some of the things that brought me joy. In 2012, I had a rejection episode. This is when your body rejects the organ and the doctors did everything they could to save the kidney and keep me off dialysis and that worked until 2017, when I had my second transplant. It was a pre-emptive transplant to ensure I didn’t go back on dialysis. Unfortunately things didn’t work out like they did the first time. I have been back on dialysis since 2018, over a year now and it has been one of the most painful and tasking seasons of my life.
That must be challenging. How has it affected you?
Oh my, have you got all day for this? It has been a painful ordeal and experience second time around and agonisingly exhausting. Beyond it being daunting, it’s also mentally and emotionally draining. My mum was alive the first time I found myself on dialysis. So she was my rock and support. She did everything. Now, that is no longer the case and things are very difficult without her. I equate dialysis to that lover you can’t stand the sight of but for one reason or another you have to find ways to tolerate them until you things sort themselves out. Dialysis keeps me alive, I have to respect the process, show up and be grateful that I can get my treatment. There are people who face challenges getting the right amount of dialysis they need for one reason or the other. Dialysis affects different people in different ways. For me, dialysis can be a lonely experience and I’m not talking about lack of friends or people you can talk to or rely on. It’s just that way because it feels like this burden that only you have to carry, as you are the one who has to go to the hospital three times a week, sit on a machine for four hours or more and then deal with the aftermath of dialysis session. On some days I look drunk, I talk drunk and there are days I do not want to talk to a soul and simply want to be left alone. There are days when I’m so exhausted; I don’t even have the energy to talk. I just want to sleep.
Why did you want to talk about your experience and do this campaign and be open about your situation?
Being Nigerian and African, I understand there are stigmas attached to living with a health challenge. But I have been on this journey since I was 15 years old, I’m now at my I really don’t care stage. Being back on dialysis has bee jarring to my spirit and soul. However, what has equally been disheartening is seeing and learning about the number of people, men and women from the African and African Caribbean community here in the UK, on dialysis. When I was previously on dialysis, I remember being one of the youngest in the various units I found myself. This was between 1996 and 2002. Now, when I walk into the dialysis unit, I see more people who look like me, in particular young men and women with their whole lives ahead of them. This issue is a thief of our time because it is time demanding and consuming, dreams and hopes, potential and ability to contribute to society the way we may have preferred to do it. I think the more we have voices talking about this, the more we can raise awareness about organ donation and sensitise people that there is a need and let them know how they can contribute and make a change. AS for as I am concerned it is a “all hands on deck” type of job and if we are going to see a change, then the work is really down to all of us because we are all we have got.
What are some taboos you have heard about organ donation?
I think one big taboo area when it comes to organ donation is probably the fact that we don’t like talking about death. It is an uncomfortable conversation and that’s understandable. No one wants to die or wants their loved ones to die. Even as someone who is faced with this challenge, I’m uncomfortable talking about death. I lost my mum three years ago and it’s a hard and emotional subject for me. Even before she died, part of me was aware it was going to happen because she was ill. However, and for a long time, I refused to talk about death as it relates to her. I just could not bring myself to deal with it or process the emotions that came with it because it was too painful. So I do understand that it’s not a comfortable conversation.
I don’t know if this comes from a place of fear or just superstitious beliefs that surrounds having such a morbid conversation but this is one area that sticks out for me. Add the fact that as Africans, a lot of us are people of faith – be that Christianity or Islam or whatever particular faith people practice. And wherever we go, we take our faith with us. I’m not equipped to talk about this from the point of view of Islam or any other faith. However, I’m a Christian and I have never read any scripture verse that says one cannot donate their organs. I do know that when the subject of death comes up, the first and most likely response and reaction is to “rebuke and reject it,” especially if you are Nigerian. I was recently having a conversation with a friend and we laughed about this particular point. No one wants to die.
It’s only fair and right that one would want to live a long and fulfilling life. No parent wants his or her young child to die. No friend wants to speak about their loved ones or friends in the past tense. However, death is one of those things in life that we can’t avoid and when it happens, it forces us to have that conversation as we process grief. I think the more we create a space that allows for us to have uncomfortable conversations about issues like this, the less scary and fearful it is. The more we are able to talk about blood and organ donation as something that is a part of us and not foreign to us, the more it becomes normal to us and not the exception. I think when we start to see the sacredness and the miracle that comes with organ donation and transplantation because that’s how I see it, a miracle that gives the sacred gift of life, the more we will be able to flip the conversation about death and morbidity on its head. When we start to have a different perspective that we as individuals or our loved ones have the ability to give someone else the gift of a second chance, maybe we can find a way of dealing with this particular taboo.
Now add the elements of culture and of course there are the myths about organ donation, which creates barriers to people being willing to have this conversation. The truth remains that until we get to the point where we can have this conversation and on a continuous basis until we see a shift in paradigm and action, we are going to be faced with the problem of lack of donors from the African and African Caribbean and global Black diaspora community.
Are the taboos specific to the UK? Is there any difference between the Caribbean and African communities regarding this?
I’m currently researching and reading up about the challenge of there not being enough people from the African and African Caribbean community in the UK coming forward as donors. I think it is the same across board with both communities over here. While I don’t know for sure if certain taboos around organ donation are only specific to the UK, one could say talking about death is a hard subject for anyone, no matter where you are. As such this is a factor that cuts across borders and boundaries, and in my opinion is not specific to just the UK. I understand that in the US, there is a historical context and reasons as to why Black people may be reluctant to participate, especially when you take into account that people have been used for experiments without their knowledge and consent in the past. For sure, that would make anyone not trust the people who are supposed to ensure your wellbeing. However, I can’t speak beyond that to what some of the taboos are in other countries.
How does the media campaign specifically target the African Diaspora in the UK?
I think there is something powerful when you can identify yourself in other people or you find that you have similarities. It is about seeing a face you can identity with or a voice and story that speaks to what you may be dealing with or know someone who is dealing with a similar issue.
Being Nigerian and seeing that there is a considerable number of Nigerians at the hospital where I go for dialysis, likewise people from other African countries and the African Caribbean community; my friend Ade, who is the photographer that shot these images and I, thought using images to tell my story would be one way of creating that connection with others. The goal was to demonstrate how dialysis restricts my life when we were thinking of ways to tell the story. I remember sending him a whatsapp message that I wanted to bring some dialysis lines, which is what you can see wrapped around me like I have been tied up in the images. And he responded that he was thinking about the same thing. I remember being very happy that we were thinking along the same lines. The white containers you can see around me in some of the images are the containers with the dialysate fluid used during dialysis to clean my blood and remove the toxins that build up. That is the job your kidney is supposed to do. However, since that’s not possible, the dialysis machine helps you to do that and needs the dialysate fluid to do it successfully. The head wrap needs no explanation but Ade incorporated that so people could identify with me based on my African heritage. I don’t need to tell you the country I’m from. You can see something on me or about me that creates that connection and with everything else, a curiosity builds.
I specifically wanted to push for a social media campaign because where better to have a conversation about organ donation than a space like Twitter, Facebook or Instagram, where visual images play a big role in the conversations that take place. It was also a way for the conversation to reach more people than I could physically reach on my own and by the time others chime in, we will see and hear different perspectives on the issue. We have specifically not put any text on the images because we want people to be curious and ask questions about what the images are for. That is one way to start a conversation. I am sure there will some folks that express fear, anxiety or are not be sure. I think that’s a good place to start because there could also be other people who can help bring a point of view that calms their fears and concerns with the insight they bring to the conversation. I have reached out some members of the Nigerian Twitter community to help me push the message by retweeting my tweets. I am sure this added to the use of hashtags will help spread the world.
What do you hope these images and the campaign achieves?
My vision is that these images and my story will help amplify the conversation around organ donation and that more people will engage with the issue. The conversation about organ donation needs to be an ongoing one until we see a shift in paradigm and action from our community. We need to move from being firefighters who respond and react when it hits the news that someone is in desperate need to being a people who have become part of the solution. As such, when a need arises, we re ready to help.