1st November, 2013
A university don exposes challenges faced by Sickle Cell disease sufferers
When Olayinka Abimbola Egbokhare, a lecturer at the Faculty of Arts, University of Ibadan, UI, wrote what was to be her first novel, Dazzling Mirage, in 1991, she hardly guessed it would bring her fame several years later. The novel caught the attention of Tunde Kelani, a foremost Nigerian cinematographer, who has turned it into a movie which would be premiered soon. Beyond that, it is now a prescribed reading text in secondary and tertiary institutions, with the publishers battling to meet the high local and international demand.
The author, who described the turning of the novel into a movie as a humble experience that has encouraged her creative writing, promised to publish more novels and poems, adding that she would translate Dazzling Mirage into other languages to extend its global appeal. The novel primarily showcases the travails of sufferers of Sickle Cell Anaemia, often referred to as SS, in a society that attaches stigma to it. “It is a narrative about the adoptive daughter of the Adebayos. It is a story of her travails and triumphs against the odds of physical pains and psychological trauma which she experiences in her journey to self-fulfilment. It is about different kinds of love, marked by acts of betrayal and loyalty, the life of a typical Sickle Cell disease sufferer who, by reason of her peculiar genotype, is sentenced to bouts of crises which make life very unpredictable,” the author explained.
Olayinka, a doctor of Communication and Language Arts from UI, is an agile and pleasant personality married to Francis Egbokhare, a professor of linguistics and former director, Distance Learning Centre, DLC, at the same institution.
Explaining how and when she was inspired to write the novel, which by its title suggests that it is an illusion that sicklers have to die young, Dr. Egbokhare said she initially wrote the novel in 1991 as her Bachelor degree project in her final year as a Communication and Language Arts student. “The CLA Department allows final year students to choose from research work, long essay and writing a novel or a short play. To write a novel, you must have taken elective courses from English Department in Creative Writing and you must have taken writing courses in CLA from 100 level to 400 level and you must be competent enough to write a novel. If you fulfilled all these conditions, you will be allowed to write a novel as your final year project. I wanted to write a love story and wanted to use the opportunity to talk a little about SS. I had to strike a balance and which must not be too lopsided so that there would not be too much weight on the love angle and too little weight on the SS angle,” she said.
As a student, she recalled, she discovered that there were some scientific or medical issues that could be talked about by non-science people. She realised that if she was to write on something as serious as Sickle Cell Anaemia, it must be told from the perspective of someone who had a need to share information, not in a highly clinical environment. “It was not a textbook on Sickle Cell Anaemia but I wanted as much as possible to talk about the concept in a way that the reader would not know that he is being taken on two different journeys: a world view of Sickle Cell Anaemia and maybe, a more familiar journey into the world of relationship and romance,” she added.
As a novice on sickle cell, she crunched the first challenge of getting adequate information after a doctor at the institution’s health centre linked her up with UCH Dermatology Department, which in turn introduced her to some students who were attending clinic for the disease. “I had to make friends with them, hang out and attract them to be able to interact them. Eliciting information from them did not follow the usual questioning and answering. It is more of observations and interactions from friendship level. Some of them became my friends. We had the opportunity to meet on campus since we were all students. Some of them were reserved and didn’t want to give information. They were not too friendly and would not want one to write a story about them. But I had to convince them that the story must be written to correct long-held misconceptions about them. I also interviewed some medical doctors and read books on the disease. The preliminary research took about four months and it continued while the writing lasted,” she said.
After completing the work as a project and submitting it to the department, few friends who had the privilege of reading it encouraged her to send it to a publishing house for consideration to be published as a novel. “They even put serious pressure on me to do so,” she recalled. Succumbing to the pressure, the author reworked and reviewed the piece in 1992, and sent the synopsis to Heinemann London, which later demanded for the full chapters. They accepted to publish it only if the author played down the Sickle Cell theme and played up the love aspect as well as making it more African. “I was very excited that Heinemann London wanted to publish my work. But I didn’t want to water down the Sickle Cell aspect. So I told them I wasn’t willing. I decided not to play it down because that is what makes the novel unique, unlike love stories that have been overflogged. I rested and left the idea to publish it but my friends kept pressurising me. The break came in 2007. I was about finishing my Ph.D thesis which had occupied my time and writing focus when somebody asked me, ‘What happened to your novel?’ When I replied that it was still there, he advised me to bring it out and get it published. I had to rework it and gave it to the publisher,” she disclosed.
As regards the ending of the novel, the writer pointed out: “There are many ways a story can end. But I think we gain more from our living than from our dying. The lead character, Funimiwo, had many things to her advantage. She got good medical care, outstanding support from her family and she cooperated with them. Now we don’t want to advocate bad news and reinforce people’s belief that sicklers are liable to die young. Some of them succeeded and died. The aim is not to promote negative conceptions but see the disease like any other ailment. How many things can one find out about his or her partner before marriage? And what will one do if he finds out that his partner has ailments like cancer or asthma? Get out of the marriage? Asthma can be as devastating as Sickle Cell. How many things are we going to be running away from for the rest of our lives? I believe that life is about tackling our challenges not running away from them. Besides, I also believe in happy endings. Maybe my challenge is that I have read many love novels and love novels normally have happy endings. I think it is more realistic for her (Funmiwo) to live than to die with the kind of support she gets.”
Olayinka, however, highlighted some challenges faced by Sickle Cell patients to include insufficient health care facilities, stigmatisation and derogatory words, saying: “Some patients I met told me how laboratory technologists who conducted blood tests and discovered that a child had SS told her, ‘You are going to be spending a fortune taking care of this child,’ and the child was still a baby. Such a laboratory technologist is not helping matters. The technologist, in the presence of the mother, even called the child ‘Owolabi’, and said, “You will be coming here often” and “we will be seeing you here”. That is not helpful. The society stigmatises the sickler too much. People make terrible comments about them. Some of my SS friends suffer serious emotional trauma being jilted.”
She suggested that with improved health care, many sicklers would be prevented from dying young. She also spoke against stigmatisation, adding that she had to be involved in many health advocacy groups such as health advocacy for HIV/AIDS, preventing mother to child transmission of HIV, and presently, she is seriously involved in advocacy for child and adolescent mental health. “I will play my part in my little way to make people with health challenges live a worthwhile life,” she affirmed.
—Gbenro Adesina/Ibadan