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Rapper and songwriter, Japheth Maichibi, also known as JayBarry, who is confined to a wheelchair, speaks to VICTORIA EDEME about his musical career and health challenges
What was your childhood like?
I was born on the 28th of February 1989 into a family of six children. I’m a rapper and motivational speaker. I’m based in Abuja but from the Akwanga Local Government Area of Nasarawa State. I’m the last born of the family. From the age of six, I’ve lived a life of pain. I was diagnosed with sickle cell at birth, but it became tough when I was six. From primary school, I’ve been having the usual on-and-off crisis, but I was able to manoeuvre through secondary school and university. Sometimes, I missed school for the whole term and resumed two weeks before the exams. I attended Model Primary School before moving to Government Day Secondary School, Karo. In my senior year, I moved to a boarding house at Government Science Secondary School, Pyakasa. I was a 400-level Psychology student at Federal University, Lafia.
 Can you share the circumstances that led to your being confined to wheelchair usage?
 I was supposed to have graduated from the university in 2015 but everything changed in October 2014 just when I had got my project topic. Ever since I left school that day, I’ve not been able to go back till this very moment. My life suddenly took a drastic turn, filled with twists and turns, pain and sorrow. I have had to defer my admission since then. Till now, I’m still deferring it. It was on a Sunday and I got back home to get some materials from my dad because he also studied Psychology. The distance between my Abuja residence and Keffi, where my school is located, is just about a 30-minute drive. I just took my usual nap in the afternoon with the plan that I’d go back to school in the evening. When I woke up, I heard a squeaky sound in my left hip, which I did not understand. I told my mum and she said I should not go back to school yet so that we’d observe the situation.
That night, I could not sleep; I had severe pain. It was hellish for me. That was the beginning of my tough journey. I woke up the next morning and left for the hospital. I had an X-ray done and it showed that my left hip was damaged. Nobody knew how it came about because I had not fallen or complained of hip pain before, so the X-ray result was very surprising. That was the first time I heard of a complication in sickle cell called avascular necrosis. The AVN is a complication in sickle cell that causes bone tissues to die and decay due to a shortage of blood supply and oxygen. The doctor said I needed hip replacement surgery. While in school, I had another complication on my left leg, known as an ankle ulcer in sickle cell, and my ankle was bandaged. We were told that because of the ankle ulcer, we couldn’t go ahead with the surgery. This was because of the fear of infection rising from the sore to the surgery site. Ideally, the sore is supposed to be healed before any surgery. I was placed on strong painkillers and confined to a wheelchair so that I could focus on the leg sore to heal.
It’s been there for about 10 years now. When I got back home after seeing the doctor, I developed more complications. Before we knew it, I could not breathe well and was diagnosed with an enlarged heart, known as acute chest syndrome. I was dealing with the ACS and crisis at the same time. At that time, I prayed for death to come. Comfort is a luxury very hard to afford in my world. I was bedridden all through 2014. In 2015, the ulcer refused to heal. It was not easy handling it. It was a trauma and mental pain seeing your mates graduate and you’re just stuck in a wheelchair. We went to an Indian hospital in Abuja and they told us that truly, the sore needed to heal before the surgery.
In June 2016, we were introduced to one doctor here in Abuja. We consulted with him and he assured us that he could perform the surgery even with the leg ulcer. I was in severe pain, so it was an option we were willing to jump on. My parents will do anything to see me free of pain. So, he (doctor) assured us that he would employ a technique to treat the sore and perform the surgery at the same time. So at that point, I had hip replacement surgery. My parents spent about N3m on it. After the surgery, the pain reduced and I got discharged. After a week, the hip dislocated and we had to return to the hospital. A revision surgery then had to be done to put the hip back in place. That was another dose of pain I had to go through. After the revision surgery, I went back home. Shortly after, it dislocated again. At that point, I got tired and told them to leave me the way I was. I left my distressed hip like that.
As of then, I had an issue with my left knee, known as knee ankylosis, and I realised that I could not stretch my left knee. We went back to the doctor and explained everything to him and he gave a lot of terms. It was later when we consulted with another doctor that we were told that the previous doctor made a mistake and that was why the surgery didn’t work out. In October 2016, I got into active advocacy. As of then, I was on crutches. I started creating awareness about sickle cell. I’m also planning to write a book about my experiences for the whole world to know my story and experience with sickle cell. I was on admission when my mates graduated and it was a trauma for me at that period. I saw my friends smiling and jubilant, while I was bedridden. It was a pain I could not handle and till today, it hurts because I have always wanted to be a graduate and serve my father’s land. All these have passed me now, but I have to live with it for the rest of my life.
 Regarding sickle cell disease, do you harbour any blame towards your parents?
 My parents didn’t know about their genotypes when they got married. They are both AS. I don’t blame them for what I am experiencing because they got married in the 1970s and there wasn’t much awareness about science then. I love my parents and I don’t blame them because they’ve done an amazing job standing by me. God has used them to sustain my life during this period. I don’t blame anyone for what I’m going through. My older brother and I were born with SS genotype, but he’s late now. He died in 2022. The other four children of our parents are all okay. My late brother fought well. He died at 43 and was able to get married and had a son. No one even knew I had sickle cell in my university days, except for my close friends. I took my routine drug seriously and I watched my triggers very well. I understood my stress levels. I lived life very well. I even played football and basketball.
 What led you to become a rapper and songwriter?
 In 2016, I started using crutches but I developed another complication and had to go back to being confined to a wheelchair. At some point, I was praying for death but death did not come and that was how I went into songwriting to inspire others. I started rapping about my pain and it brought me a lot of peace when I started it. I also did a lot of motivational write-ups on Facebook and I grew followers and had people who looked up to me and were inspired by my work. I get encouragement from members of the public when people appreciate me for motivating them. I work with a couple of foundations and we create awareness.
 What plans do you have for your music career?
 I started creating music to encourage myself and for fun. My type of music is rap and is often about my experiences in life. I hope to use my music to create more awareness and dish out hope and encouragement to the world. Rapping about my pain made me feel superior and bigger than the pain. It was a form of eulogy to me. I also hope to own my studio where I can make music, whether it pays me or not. As long as my music inspires me and encourages others, it’s enough for me. My songs are on Audiomack, but they are not monetised yet. But moving forward, I hope to do better. I believe my music will take me to places someday. I’ve been trying to reach out to top people in the music industry but I’m yet to get their attention. I know someday that I will, but I have had direct messages from people telling me how my songs inspired them. For now, I’m okay with that.
 Have you encountered situations where you were discriminated against or treated unfairly because of your condition?
 In my secondary school days, the only problem I had was the school authorities moving me from one class to another and introducing me as a sickle cell patient so that people would be careful in their dealings with me. I didn’t think much of it because my mum always told me that I was special and there were some things other people did that I could not do. So I did not experience any discrimination. I carried myself well and was loved by my teachers and friends. That was all that mattered to me.
 Do you have any fears about marriage?
 I’ve been in relationships that got broken due to genotype incompatibility. For marriage, I doubt if I have any fears. I’m a man of substance. I believe my partner is out there. When it’s time for me to settle down, things will fall into place. There are sickle cell survivors out there who are doing well. So, there’s no course for alarm and no course to fear. I just have to believe in myself. I don’t look down on myself and I dislike being pitied. For marriage, I’m trusting God that I’ll have a beautiful home someday.
 Can you shed more light on your previous relationships?
 The first breakup was due to genotype incompatibility. It was not easy but we had to let go. We didn’t get the right diagnosis and she was told that she was AS during a health check in secondary school. Funnily enough, we reconnected years later and she told me that she was AA. But we had already moved on. That’s why I always advocate for people to run genotype tests up to three or four times in different laboratories. I’ve been in six relationships and all broke up due to genotype-related issues. Sometimes you would find someone who understands you and accepts you for who you are, but you’d find out that your genotypes are not matching. Then, when you meet someone that the genotype matches, you realise that such a person doesn’t truly understand you. That’s why it’s advisable to know one’s genotype before going ahead.
 How have you been getting support?
 I have moral support from my family and friends. My parents are retired civil servants and I’m the only one yet to be married in my home. I was not always in a wheelchair. I was on crutches from 2016 to 2023. But my right knee, which was supporting me to move around with crutches, came down with a complication.
 What goals do you have for the future considering your health challenges and experiences?
I still need two replacement surgeries and treatment for ankle ulcers on both legs. I trust God that someday I’ll conquer it all and sit before the world and tell them that sickle cell is not a death sentence. It depends on how you see it and accept it. I believe I will live to my 90s and that’s how I encourage other warriors in the sickle cell community. The plan is to raise funds and travel abroad for knee replacement surgeries because, after the first experience, I got scared of being treated by Nigerian doctors, because of the first doctor who did a bad job at the beginning. Despite the assurance and money spent on the surgery, we reported back to him and he didn’t say anything much. I’ve had five surgeries. I’ve been told that I should be careful about the person that handles my next hip surgery or I’ll be stuck in a wheelchair forever.
For sickle cell in general, Nigeria has to do a lot because we don’t have experienced experts who will handle the situation. The majority of my complications are orthopaedic. We have good orthopaedic hospitals in Nigeria but I will feel more comfortable when I travel out to get the best care. I still believe that I’d be a graduate. If I don’t go back to complete the one year left, I’ll enrol in an online university just to get my certificate. I’m not giving up on that dream. I also want to use my voice to create more awareness about any condition. I would love to be a massive inspiration to many. Someday, I would love to get married. I want to dance on my wedding day.

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