Vivian Udunze, a 26-year-old visually impaired indigene of Imo State and a student of Guidance and Counselling at the University of Lagos, speaks in an interview about the events that led to her losing her sight at the age of six and how she has managed to live a fulfilling life despite the setback.
Can you please introduce yourself?
My name is Vivian Udunze. I am from the Orsu Local Government Area of Imo State. I am 26 years old. I was born into a family of seven. I am the second child, but the first daughter. I am a student of Guidance and Counselling at the University of Lagos.
When did you become visually impaired?
A few years after I was born, I had malaria and it was so severe. I was in school at the time. My father said I should be brought from school when it became imperative to do so, and I was taken to a medical laboratory for tests. I was around six years old at the time. When they took me for a test, they found out that I had malaria. I was then taken to a private hospital for further investigation and treatment. The doctor at the clinic, after many tests, told them to take me to a spiritual home for help, stating that my condition was beyond medicine. My father was wealthy then, so he refused to do so but he took me to his company’s hospital. There I was taking treatment. There was a nurse, whom they said was the owner of the hospital; she was the one administering medication. We didn’t know that the drugs that she administered had already expired. She would bring them out of a sachet and put them in another drug bag before administering them to me. There was no time for my parents to check if the drugs were expired or not.
How then did you know that the drugs had expired?
Each time I took these drugs, my eyes would be reddish and I would have excruciating pain. I would also have episodes of migraine. My muscles and joints would ache badly, and this would make me scream. It was so pathetic.
Did you tell your parents about these things you were feeling?
I was very young. I couldn’t really communicate well. But, I knew that the reactions happened whenever I took the drugs. At first, my parents didn’t notice; they felt it was the sickness that was making me shout. But, after a few days, my mother noticed it and complained to my dad, who said he would inform the doctor. The doctor told him to continue giving me the drugs that they were effective. So, he continued. Before the end of the three months, I was already burnt all over my body. It was as though I was bathed with acid. My skin was peeling. I couldn’t see. It was later on that it was diagnosed that I had the Steven Johnson Syndrome – a reaction caused by a sulphur mite or expired products. This syndrome was what led to my blindness. One of the drugs, we later learnt, was supposed to be for those who had seizures, like people with epilepsy, convulsion and the likes, and not malaria. She (nurse) was just administering the drug just to make her money.
When it got this worse, what were the reactions from your parents?
They had to employ other professionals who came to help me. They also involved the help of traditional healers who were giving me herbs. After some months, I felt like I was going to die. I kept telling them that I was dying. It felt like I was dead yet alive.
When did you notice that you could no longer see? Was it sudden or gradual?
During those periods I was still taking the drugs, which made my eyes red, and I discovered that my vision was blurry. Then, if I looked anywhere, all I would see was red. Later on, it just went blurry. I would always complain to my mom that my eyes were dark and that I was finding it hard to see, but she didn’t really understand the gravity of what I was passing through. She would only be crying whenever this happened. After a few months, I just noticed that I couldn’t see again. My vision just went blank. When I told my parents this, they went back to the first nurse, who was administering those fake drugs to me and told her what was happening. She stressed that no matter what happened, they (my parents) should not fail to give me those drugs. At some point, another nurse told my parents to stop the drugs. Once they did, I was able to stand but my sight was still gone and I was not able to see again. Every part of my body was still burnt.
They then took me to the Isolo General Hospital. One Dr Oluyemi came out, and on carrying out some tests, he discovered I had Steven Johnson Syndrome. He screamed and enquired from my parents about the drugs I was being given and they told him that they didn’t know but it was a nurse from one of the private hospitals who was administering them. The doctor told them that from what
he saw, I was being given expired drugs, which needed to stop forthwith. The doctor started treating me and after three days, I got a bit better.
My dad, being naïve then, went back to the first nurse, who administered those expired drugs that the doctors had told me to stop. He met the nurse in her car and requested the drugs. She said she was travelling to Namibia to meet her husband, but instructed another nurse to get two packs of the drugs for my dad. She forgot to unpack the drugs from the pack and put them in another nylon bag as she used to do when my dad was driving home; he decided to read the pack. On reading, he found out that the drugs had expired for four years. Four whole years! He thought he was hallucinating, so he went back home to read it again and found out that it had truly expired. He began to cry. He kept saying, ‘So, I have been the one killing my daughter?’ till he got home.
What action did he take?
He ran to the Isolo General Hospital and told Dr Oluyemi that he now knew where the problem was coming from. He showed the doctor the drugs and the whole hospital was thrown into confusion.
Did he report this case to the authorities?
Dr Oluyemi advised my dad to sue the clinic. On getting there, the nurse had closed the property and dismissed all the staff members and fled the country. My dad, however, involved the government and it was sealed off. I don’t know what happened after that.
How did this affect your education?
My education was really affected because I needed to stop formal learning for the sighted and embrace Braille letters. It was really difficult for me to transition. It took me years before my dad told his boss that he had a blind daughter and didn’t know what to do with her schooling. He then told my dad that there were schools for visually-impaired people scattered around Lagos. That was how I was enrolled in the Pacelli School for the Blind, Ikeja, Lagos. I then resumed in 2005.
You are a second-year student of Guidance and Counselling at UNILAG. Why did you choose this course?
I will like to say first that going to school for visually-impaired persons is very expensive. In a family where you don’t have people who believe that you can make it, they will just tell you to stay at home and eat food. When you mention education, they will say, ‘What will a blind girl want to do with education?’ So, the challenges were that I needed extra help to go to school. I had to go to Ogun State to stay with some of my friends, who are also visually impaired, and we together began to write letters to NGOs for educational grants and scholarships. That was how I was able to write my WASSCE and UTME. I originally wanted to study Law, but I scored below the cut-off mark and was offered admission to study Guidance and Counselling. Now, the challenges are more. We have a lot of things to do with money. When sighted people are buying handouts, we would have to buy and scan them, get them in Braille, get the soft copies in our computer and the like. We also need a recorder and a phone that is Google-enabled. You need a guiding scheme that can navigate your way. Sometimes, for me, food is a problem because all my money is already spent on feeding.
How did you cope with all of this?
As a child, I didn’t understand the gravity of being blind. I felt it was just a phase, which would pass. It happened too sudden. I was always sustaining injuries because I would want to do the things I used to do as a fully-sighted child, forgetting that I was now blind. At a time, it dawned on me that I was now visually impaired. It was so painful for me, I must tell you. I just had to take my fate in my hands. My friends never ran away from me. They were children, too, so they didn’t even understand what it meant for one to be blind, so we still played as much as we used to.
What were some of the challenges you encountered in Pacelli?
Before I got to the school, just for a few days, I could see slightly. My sight was so faint. So, it was still difficult for me to learn how to read Braille. In fact, seeing the Braille frustrated me, and I was always crying. But, just before I knew what was happening, I could not see again after I fell from the staircase. Since then, my eyelids just closed and it has remained like that since then. I just had to manage and accept the reality that I had become blind.
What are some lessons that you have learnt as a visually-impaired person in Nigeria?
Being blind has taught me that life is difficult for visually-impaired people in the world. This life is unfair for people with disabilities. In the aspect of education, you will notice a slow pace for these people. It draws one back educationally. When you think about the past, you will realise that your mates have gone far. It brings in pain and sharp sorrow in the heart. When I got to Pacceli, I had to begin from scratch to learn ABC as a child even though these were things I already knew as a sighted girl, but it was different for people with visual impairment.
When it comes to socialisation, it always feels like I am a burden to people around me. When I go out with friends, I keep asking them questions: ‘What is happening now? What are they doing now? How are they doing it? Are they jumping? Why are they clapping? Why are they laughing? Are they dancing?’ With the way they answer, you can tell that they feel burdened by your presence. Blindness
limits visualisation. Imagine a man taking me to the movies;
to do what? It takes the grace of God to meet people who understand you.
You did mention earlier that your dad was wealthy; how come you are encountering these difficulties now?
Well, my dad married another woman and now has another family. It is a long story. But, we do talk. He is a good man. He is old now, so it won’t be like before, you know.
What is the most embarrassing thing that has happened to you as a visually-impaired lady in Lagos?
(Laughs) One time, I was arranging my things to go home, so I mistakenly put my underwear into my purse thinking it was a face towel. So, I boarded a bus and sat in front. I was sweating so I reached for my purse and took the underwear and used it to clean my face. It was a lady who saw it and told me that it was the underwear I was using to wipe my face. It was so embarrassing. This was in a commercial bus.
If you have one wish, what will it be?
I just want someone who can invest in my education, because I really want to go to school. I am at the point in my life where whether or not I regain my sight is immaterial. I just want to live a good life that I will be proud of in the future.