I never knew what it meant to live with a patient of Sickle Cell disorder till recently, when I began to live with one. The pain they go through is better imagined than experienced. Some feel out of place and totally rejectedin their world. 19th June of every year is World Sickle Cell Day Celebration. This year, I decided to get one of us to share his experience with us.Below are some extracts…
For the intent of this interview, may we know you.
My name is Japhet Ezekiel Mischibi, also known as J Barry Blessed Child.
At what age did you find out that you have his disorder?
It was at a tender age actually. We are two in my family out of a total of six children, four boys; two girls. Our third is a sickler. And I’m the last, and also a sickler. So from his own experience, my parents were able to detect mine in time. Then, people at times have a misconception of the whole thing. They would say, “your parents, they are to be blamed…” and a whole lot of things. I said no, I can never get angry at my parents. I can never lash out on them. They never knew, they got married long ago, now am 29. Far back, there was no awareness, no science and technology to detect all these things.
Are you a graduate?
Hmmm, not really. I was about to graduate before I fell ill. October 17th, 2014, I was just about to start my project, I got my project topic and that was when I fell ill. So, I still have a year in school. I am a student of psychology, Nasarawa state University, Keffi. I am Abuja based. I actually came to Anambra State the day before yesterday for this purpose. My group invited me to come down and see how I can share my art and encourage people on this special day. I really wanted to come because a lot of people are scared about the stress of the journey. I have this stubborn mind so I said no, nothing will happen. I wasn't worried about the whole thing. It has been successful and I am enjoying my stay in Anambra.
Do you wish to go back to school?
Sure, sure, I have an intention of going back to school. That is why I am really struggling hard to see how I can get back on my feet. Get my surgeries done. I still have three complex surgeries to go for but I don't show that I am in pain. I have gotten used to all these. I still have the hope of going back to school, no matter how long it takes, I will be a graduate. I believe that God has a special plan for me. He has given me the strength to conquer and I am definitely going to conquer. I believe God and I believe myself.
You are a musician.
My brothers, I always saw them listening to music while at a tender age. Gradually I developed interest in it but I wasn't really taking it serious. I think from year one in the university, that was when I took it more seriously.
Gradually, when I fell ill, it was when it surfaced that ok, I am good at this. So, I started writing, not just songs.
I do a lot of inspirational write ups too. I try to dish out hope on my social media handles and for the music, I have been able to record two tracks. One is 'Blessed Child', an inspirational song telling a bit of my story and the second track is titled 'Brighter day', another song of hope also.
You talked about your group, what is it all about?
Ok, it is SickleCell.Org, also known as Wakanda. It is a group we formed to encourage ourselves and see how we can also encourage others out there to know more about sickle cell. There are some out there battling sickle cell but they don't know much about it themselves. Some don't even have access to medication and routine drugs. So, it's all about coming together to see how we can help. So we are all about, giving out hope while we battle this heavy burden.
Did you experience any form of discrimination or stigmatization while growing up?
Yeah! At some point, there was a lot of discrimination. Like in primary school those days, friends and peer group were like ,“you are always falling sick, abeg go. You too dey sick abeg. I don't want to play with you or you might just fall sick and they will say I’m the cause.”In my secondary school days , I experienced the same thing. When I came to the university, I read a lot of experiences about job opportunities.
You'll see a full grown, qualified graduate, just because he is battling sickle cell, they fail at job interviews, the organization gets scared that he might die in their hands. This is actually someone who has a lot to offer to the society, but at the end of the day, he is pushed away. It hurts so much. Depression can come in. You'll start reserving yourself. You'll just feel that there is no hope. So these are some things we really need to tackle. Every sickle cell patient is going through a lot. So he doesn't need more problems from society, rather love and acceptance.
What do you think the government should do to help this people who are carrying these burden?
The government has a very massive role to play. Sickle cell is a global issue, its not just a Nigerian issue. The government can really do a lot.A lot of funds can be put into Sickle Cell the way it is done for HIV/AIDS and awareness will be created. With these, I know we are going to make some headway towards sickle cell patients. So the government should see how to pass a bill.
Every sickle cell patient you see in crisis, when he goes to the hospital, the first thing is to try to soothe his or her pain. No matter how hard, try to first calm the pain. I call this pain, undefined pain. Your joints are aching, your heart is pumping, your head, your back, no comfort. You crave for and yearn for relief butt it just doesn't come. It's not every doctor that can take care of a sickle cell patient. We should have trained doctors and nurses who can handle it. I myself I have suffered enough. There are times I will be very sick, my mum will take me to the hospital. The nurses neglect me because we don't have the money to deposit or, we would be told that the doctor is busy, or not around. I will have to wait in pains. Imagine coming to a hospital hoping that I will feel a little relief but there, I will have to wait and wait and wait in pains. Though we have some facilities, the government should pump in more funds to get more facilities. The neglect is just massive and the recent drug for the management is very expensive. These drugs are only accessible to the rich. So what's the fate of those who can't afford the drugs.
Being a sickle cell patient, you have to eat good meals, take fruits and a lot of things, so, we really need attention in Nigeria. The neglect is just too much and I wish for the government will really look into this.
What are your words are of encouragement to others having this disorder?
First, you are not dying because you are carrying sickle cell. You are not a living dead, always remember that. See yourself as a normal human. At some point, you are even better than those that have AA because, naturally, God has embedded us with a killer brain. It's just there, we are very intelligent. Don't push yourself back into your shell. Go out, explore, just know the dos and don'ts. Don't you ever give up. Like I said in my song. “Don't you ever give up”. Pray hard, keep to the routine drugs. Stay away from cold. Stay away from stress. Like me, my crisis is triggered by mostly stress and malaria. I treat malaria every month and that has kept me going. I drink a lot of water. You know you are battling for blood, so you need to drink a lot of water to open the head ways for blood. It is not about giving up please. Know that you are special. Something special is not something you should cover up.See yourself as one of the strongest because battling sickle cell alone, I don't know how to describe it. But for you to survive, going through crises, you are strong. You are not a weakling, so whoever tries to discriminate against you, look the person in the eye and tell that person, 'I am strong. The pain I go through, you cannot bear it'. That's what I do, so if you want to intimidate me, I'll tell you, 'look, if I can fetch you a minute of my pain, you will just die.' I joke with it. God has always been my saving grace. I have lovely parents and friends. All we truly need is support, love and acceptance. For me, I am a blessed child.
Thanks very much for your time.
Thanks very much for having me.