Interviewer: Mr Aremu John · Responder: Mrs Blessing Oasyeme ake
Interviewer
We really want to know you, can you tell us about you and your background
Mrs Blessing
I’m not a Yoruba, I am blessing oasyeme ake. From Benin
Interviewer
Where in Benin?
Mrs Blessing
I am from Edo state but my Dad is from Onwa local government, I lost my Daddy last year at the age of 98. He was a former health worker in Jaja clinic University of Ibadan.
He retired in 1986 after which, he left for Benin as a retiree.
We are three children out of six who have sickle cell disease. My immediate younger brother and his younger sister, I am the eldest of the three of us while the rest of us are all AS.
I am the remaining left of the children who are SS.
Interviewer
So the two (2) are late now, at what particular age did you lose them?
Mrs Blessing
The first one was the second to the last born, this happened when he finished his secondary school education in 1998, he had a crisis and was rushed to UCH but did not survive the crisis. While, the second one was the last born, and went to Ekpoma University, he worked as a teacher in Edo Stat. During the 2006 census we lost him, this was due to the stress of the job on him. I thank God for my life, it is not by my own doing but by God’s grace and my Dad, he is in the medical line so he really tried for us as B-co, Glucose and all the supplements needed were provided abundantly at home for us which I can say also helped us.
I got married but had delay in conceiving. Eventually when I took in, I had issues in the 5th month of my pregnancy, I had a still birth and due to this heart-breaking event, my first marriage collapsed and I moved on not allowing it to affect me at the time.
My immediate younger brother who is late now, really stood by me during that period and did not allow me feel the weight of the loss. Given the incidence, I had to leave Kaduna to Benin to live with my parents and after sometime I left Benin to Lagos where I worked as a conductress under the Nigerian Labour Congress at the time. I forced myself to do it because I discovered I just love this thing naturally the way the ladies are well organised and I followed them at the time (2002) in Lagos.
Also I do take a lot of water. I really do not eat much but I drink a lot of water and I do not break down from crisis, if at all maybe once or twice a year and I haven’t had blood transfusion until three years ago when I had a crisis and was asked to receive blood which I refused, the doctors said my PCV was low (18). I also love eating pepper soup. I Just told my sister to help me get pepper soup which is my favourite, so I took pepper soup with malt and after that consumption I slept off and when I woke, my PCV had risen to 20.
Interviewer
What were the condiments’ in the pepper soup that makes it work for you
Mrs Blessing
You know from our side we do take it a lot and they have a lot of spices that is used in preparing the pepper soup.
Interviewer
You know in those days there is a way we use native medicine to treat various illness but the challenge was that, it was not documented at the time and from what you are saying now it is obvious that the pepper soup is one of the things that helped to enhance your PCV.
Mrs Blessing
Yes it did, infact I finished it and after I took malt and lots of water which also helped me more stable.
Interviewer
Why I am particular about that the pepper soup is because there are sickle cell persons whom I met and mere looking at them, you discover that their economic power is low and are unable to cater for their basic needs so but I have been thinking and asking around that are there no indigenous things that when you take them, even if they cannot enhance they can stabilize, and that is why I am particular… I will still make more research on this.
Mrs Blessing
There as a time the crisis was intense after the divorce when I was staying alone in my former husband’s house, I stayed there for 2 years. Whenever the crisis came that time, I usually take malt and milk to stablise, but there was this time I took it and it got worse and I had to be admitted into UCH, it was there they discovered that milk is not compatible with my system, and so I was asked to stop taking milk and since then I stopped taking milk because I became allergic to milk. Another thing I did during that time was that whenever the pain become so intense, I inject myself with intravenous (analgene) injection. So I did that till I became so tired of the crisis not until I landed in UCH and they discovered the cause which was the milk I was taking and since I stopped it, then I’ve been fine.
Interviewer
You have a business that you are managing but have you ever work in a private setting or government work
Mrs Blessing
No, apart from the Labour congress job I did in Lagos.
Interviewer
Why did you leave?
Mrs Blessing
Marriage, because my husband was from Kaduna then and I was in Lagos so I had to leave the work and join him at Kaduna.
Interviewer
I have two (2) questions around that. When you were working with them at the congress in Lagos, was there any form of stigmatization around your work or did you have any crisis around that time.
Mrs Blessing
I do have crises, and you know, my eyes are usually yellow so my colleagues usually ask almost all the time if I was fine and I’d just shrug, telling them to leave me alone that I am fine. I was feeling uncomfortable so I just wave them off and move on and I did not tell anyone then that I was SS. There were times when I tell confidants, they are usually surprised because they tell me I don’t look like I’m SS.
Interviewer
I think many thanks to your Dad, and additionally to the previous question. I wanted to ask
that did your husband notice it, did you do medical tests.
Mrs Blessing
We did tests and I also told him and even his parents knew about it, as we are from the same village and he is AA
Interviewer
So the main challenge for the marriage was the conception, still birth?
Mrs Blessing
Yes, because for the first pregnancy I was very sick that I had to leave Kaduna to Benin and that was when I gave birth to still birth and the second one I had complication so they had to do evacuation, and since the evacuation I had not taken in.
Interviewer
Can you tell us your age ma?
Mrs Blessing
I was born August 21st 1968
Interviewer
So in the next 4 years now you will be celebrating your 60th birthday, the Lord will spare your life, the lord will strengthen you and the Lord will bless you, Amen.
This current generation of Gen z and the mental health of living with sickle cell, how did you manage yours.
Mrs Blessing
For me, I don’t see myself as a person with sickle cell disease, so I don’t live in the reality of that consciousness. I do go to Cotonou to buy things and I know how I manage myself so I don’t overstress myself and I don’t force myself by competing with others, I go at my pace.
Interviewer
Hmm true, I knew a lady back in school then… someone just told me that the way this sister is treating herself, she’d die soon because she engages in activities that is way above her capacity as a person living with sickle cell disease, she has 3 to 4 boyfriends… so I said when next I see her I will talk to her but the next time I hoped to see her, I was told she was already dead due to an abortion issue.
Mrs Blessing
….and sometimes I engage in things that makes me happy naturally for example, I rear chickens and I most times I sit near them just to enjoy the view which gives me happiness.
Interviewer
So how did you meet Daddy (You current Husband)
Mrs Blessing
We bless God. Thank God it happened that his wife travelled out and most of his children are outside the country, so one of my friends introduced me to him and upon meeting him we had agreements on our conditions and everything is going on well since then which has been 8years ago now and even his mother is also still alive now at 98, we thank God.
Interviewer
You said you have not been living conscious of being sickle cell patient, not putting that
stigma on yourself
Mrs Blessing
Yes, even in terms of having child, I did not bother brooding about it knowing about the complications of child birth and moreover my younger sister has children and I take them as my own children also and I have been able to build a family for myself with people around me especially my immediate sibling’s children.
Interviewer
We thank God. God has really helped you. This leads me to ask that between the time that you were staying alone and the time you met daddy, how was your social life then and how were you able to handle pressure around peers and people.
Mrs Blessing
While I was staying alone, I don’t use to listen to what people say, even one of my immediate brother gave conditions for him to help me and I told him I do not need any help and whatever God will do he will do it by himself and that was my stand and I faced my work. Also I had only one man with whom we go out most times together back from shop then. I took my business (shop) serious and I had young children as my close friends then and they also looked out for me and I give them advise and they stand by me and by that means I had a support system. So I did not give myself unnecessary stress thinking about things that will affect me.
Interviewer
I think this will be a word of knowledge to people that are growing, I remember one of our beneficiary who has not been able to face her life and I discovered that it is when you face your life that things you want will present itself to you. There should be something you have that adds value to you and people can see the impact.
What are some strategies you use as regards to food that helps you maintains your health?
Mrs Blessing
Alright, I eat varieties of vegetables and I eat little but consistently. I also eat beans very well, there is no day we don’t eat beans in our house in its various forms. I also eat eggs every day. I also take a lot of water and I avoid carbonated drinks
Interviewer
I can see it shows on your skin. What advice will you give young parents who are dealing children that have sickle cell disease.
Mrs Blessing
I will advise against self-medication for young parents, for example in my case it was when I was rushed to UCH that the doctors discovered that I was allergic to milk and so this is to encourage young parents to ensure to find the cause that triggers their children crisis and seek appropriate medical consultation and advice so as to protect the lives of their children. I will also advise they give them lots of glucose
Interviewer
What are your thoughts about the level of awareness for sickle cell in Nigeria now?
Mrs Blessing
We are trying, the level of awareness is increasing out there now, and as you can see even churches ensures couples do their genotype test before getting engaged and it is even already a general knowledge now that everyone should know their genotype so as to avoid giving birth to children with sickle cell and prevent the repetition of the mistakes our old parents made in their time when the awareness was low.
Interviewer
Have you participated in any advocacy before now
Mrs Blessing
No
Interviewer
What do you think organizations like BASC Initiative can do to improve the lives of people living with sickle cell disease?
Mrs Blessing
I think as you have said about working towards getting a specialized hospital for sickle cell so I believe once that comes to fruition, it will also give specialized medical care access to sickle cell patients where they can be well taken care of promptly.
Interviewer
How did you hear about BASC Initiative?
Mrs Blessing
I think it was daddy who heard about it on the radio and he insisted that we join and since then we have been part of the organization
Interviewer
One of our goals is that we can get to a point where there is no sickle cell disease again and this is dependent on our level of advocacy and awareness program
Thank you so much ma, we want to have a board of trustee and so we are thinking of the people will comprise of, looking at doctors from hematological department, they are the core specialist in that area and we are looking at people in academics too and people in social works with also Politicians. We also want to extend It to you to become part of our board of trustee because as someone that has the experience will be able to influence decisions on the board that favor’s the pressing area.
Mrs Blessing
Invitation Accepted. Thank You.
Interviewer
The reason for the board is so we can expand and by the grace of God we have covered schools from Akobo down to isheku Academy, Ikolaba grammar school, so early next year we are moving to University of Ibadan, Ojoo, Eleyele, Sango. We also trusting God to add 10 more persons to our care. Also, for example if we are going to write a grant, they would like to know who we are and who are the trustees behind the organization, so that we can get access to funds for their care.
We also want to see that we are able to do bone marrow transplant once a year but we do not have that financial capacity now. What we are able to do now is basic care. We know that we cannot do it on our own, we need to depend on people’s experience.
Interviewer
To ask Daddy… what has been your experience with her
Mrs Blessing
I can say she is very hardworking; she works from morning to evening although in the compound and she is very strong even stronger than me both in heart and act. She also manages herself very well, she has studied her body to know when the crisis comes knocking and she manages it well by taking lots of water in a still position with malt until the pain goes down, she also drives long distances which shows her resilience.
Interviewer
Is there any other suggestion you have for BASC initiative
Mrs Blessing
I want to say that, you should be checking on the people in your care consistently to know how they are faring and what they are passing through for instance twice a month
Interviewer
Thank you so much we will be sure to implement as you have suggested, we really appreciate your coming and do not take it for granted. God will bless you and grant you journey mercy in Jesus name, AMEN.