“I gave Debo all I had, including those things I shouldn’t have given him. It was all in good faith, to make him stay with me. He tried to endure until I had a crisis and he never showed up again. He was the only one that stayed around me for a year; other men fled at the mention of my genotype. Before Debo, I have had about seven that ended the same way. Few gave excuses, while others just disappeared. After the fifth partner left me at the roadside on our way to a friend’s party, I knew it was going to be hard for me to find love.”
Those are the words of Matthew Judith Ojonugwa, a sickle cell survivor and an indigene of Kogi State. They fill you with pity. They stab you with guilt as if you were one of those she is talking about. They make you want to move in with her if that step could help assuage her wounded feelings.
Judith Ojonugwa’s sad story
But truth is, even if you were to do so, it is not going to remove anything from the fact that sickle cell survivors or victims are hardly lucky with love as their non-affected counterparts are. So? The feelings that Judith, a graduate of Kogi State Polytechnic, Lokoja, expressed here are quite typical of sickle cell survivors. A ‘warrior’ as sickle cell survivors fondly call themselves, as she narrated, her genotype has been a great hindrance to her finding true love. The fourth born in her family and, as well the second sickle cell carrier of the Ojonugwa family, Judith told Saturday Sun that admirers flee immediately she opens her mouth to say she is a ‘warrior.’
While standing, she has the shape of a poster girl but when she walks she always leaves a letter Z symbol in her track. But all the same, she is happy to be alive from the disease which had already claimed the life of one of her family members.
“The first carrier of the disease was my elder sister and she died when I was barely 5-years-old,” she told our reporter. “I am currently on a zimmer frame walker and a walking aid as a result of some complications of battling sickle cell.”
As conversation turned again to the issue of love, she sneers at your suggestion: “What guy will leave all the healthy girls out there and go for a Z-walker like me? I have seen situations where men would approach me at a party and request a dance. My refusal, at first, makes me look rude but after close observation, I get the ‘sorry look’ and that is the end. Those who have survived and have had someone to have sex with are lucky. Most fear to have sex with a carrier especially when they have pre-information of their condition. I have been in position that I needed to beg him but I didn’t because I have my pride to protect as a ‘warrior.”
Judith admits however, that it is not easy having to bore it all in her strides. “Consider for a moment a boisterous child, full of life, loved by all, then she started to grow thin and begin to develop yellowish eyes with a protruding stomach. Sometimes, I go through oxygen, may or may not get to be transferred but, of course, normal saline, injections and a strong painkiller called Pentazocine are always at bay. Then friends started to run away and neighbours ward off their children.”
But she was surprised when her last boyfriend left her to get married to someone else in May while she was in hospital battling for survival. “He had always known about my genotype but never showed any sign of fear, only concern,” she said. “Then, he stopped calling or picking my calls. I was shocked when I heard that he was getting married. I planned on attending but I could not because I was hospitalized.”
Explaining how her case landed her in hospital and caused her to miss the wedding, she said. “It started right in my apartment in school, on February 3, 2019, with a mild fever crisis. And on March 6, 2019, few days to my 24th birthday, I slept and woke up, got chatting with my roommates in the room as well as playing and listening to music. I got up to go to the toilet. After a few steps, I started hearing a squeaky sound from my left hip. At first, I thought it was because I just woke up and was probably exhausted. I shoved it aside but that night I couldn’t sleep. The pain persisted; it was an excruciating pain, no comfort, and no joy. I managed the pain for a month coupled with my drugs and painkillers because exam was barely a month away. Things later got out of hand. I could barely walk or do anything myself. I was in the hospital bed until recently. I could not attend the wedding. I don’t blame him because he is human.”
She has since put the incident behind her, she said, and right now, her ambition is to start Judith Ojonnugwa Sickle Cell Foundation to help educate all, including non-carriers, on sickle cell.
Audrey Mukoro’s search for genuine love
Another ‘warrior’, Miss Audrey Mukoro, founder of Audrey Sickle Cell Foundation also confessed to have given up on her search for genuine love. The proud single mother added that she has had her a fill of emotional heartbreaks.
“I have had many disappointing relationships with men, not only from alleged lovers but also from friends whenever I try to open up to them,” she said. “After opening up, issues just arrive from nowhere. It is worst with those who were preparing to woo me. I open up early because I know it will be a problem later. The one that hurt me most was when my childhood friend broke my heart. We were already making plans for our future, the number of kids we would have, where to build houses and all that. But on the long run, his family was not supportive. There was a time I was on admission. He could not visit me because the family rebuked him from continuing with the relationship. It was 18 years ago.
“Now, I don’t expect anything from anybody because people are still going to give excuses for not loving me back. Even when it seems their heart is with you but due to the stigma, they are forced to relent. Currently, I have a friend that I am close to. He wants more if only he could. Then, one day I threw a question at him. I wanted to know if he was confused because I am a single mum or afraid of my genotype. He replied that he was not scared of anything people were saying. He said his mind was telling him that we can’t be together. The truth was that he was afraid of what people would say about him being with me. He was not man enough to confront his fears.”
Audrey is among the lucky ones Judith spoke about. She is a single mother who is proud of her child. She said that her decision to remain single was not as a result of her genotype but due to the revelation she stumbled on, about her ex-fiancée. “We have had our traditional marriage and were just preparing for the white wedding, when I found out some things about him that would have been a problem in the future,” she explained. “I can’t say the things because he is the father of my child and might see this. But I want to put things straight: I was the one who ended the relationship.”
You wanted to know what makes her strong. She said she became strong from lack of getting job, making friends and getting into a relationship. She said getting into a relationship has been a challenge and an entirely different ballgame. She added that this started from the days her parents would refer her as ‘half-being’ because she suffered enuresis.
“I was bedwetting as a child, it was not much of a problem because almost everybody did bedwet as a child except that mine didn’t stop in time and it kept on till my teen years,” she lamented. “My parent was always embarrassed and referred me as half-being.”
On her jobless status and other rejections, she observed that, “even when I am qualified for the job, you hear them give flimsy excuses. I get the same remark from other people when I am trying to get into a relationship, they tell the other person ‘don’t get close to this person…Even when it is evident that I am doing well, they still make such remarks because I have sickle cell. The ones that come close tend to take me for a ride, take advantage of me because to them, I am a warrior and I cannot do anything.”
But she insists that, “sickle cell is not a death sentence. Sickle cell warriors are not weaklings. Yes, our body system works differently from yours but it does not in any way make us lazy or deserve any form of discrimination.”
The men’s tales
Japheth Ezekiel Maichibi, fondly called Jaybarry is another ‘warrior’ his genotype has denied love. The 400 level Psychology Department student of Nasarawa State University, Keffi, Nasarawa State, said he has called off few relationships. “I can’t recall anyone openly stating it as a reason but their body language speaks volumes. The few resilient ones broke up with me because of the genotype incompatibility.”
Jaybarry has an extreme case of sickle cell crisis. He is suffering from at least three problems on his left leg; Avascular Necrosis (AVN), ankle ulcer and a fused knee (ankylosis). When asked if he has ever had sex, he gave the following answer:
“I don’t think about that because I had an ankle ulcer. I was already battling with it before AVN struck. Another sad story, I was told to treat the ankle ulcer first else if I had carried on with the AVN surgery, the infection would have risen from the ankle ulcer to the surgery site. With the hip pain and ankle ulcer, I was confined to a wheelchair since I couldn’t move on my own, my hip is gone. I was confined to the wheelchair for more than a year. Due to the everyday excruciating pain, I got used to a particular position, the only point I derived little comfort for sleep, it required I bend the affected leg to a certain comfort zone, gradually like a joke, I started having pains on my knee, I couldn’t stretch it. In as much as it was massaged, whenever I straighten my leg the pain was hell. AVN is a nightmare most warriors would testify. Imagine a decayed part of your bone left with rigid sharp edges, every little move was a dose of excruciating pain. If pain were like some kind of medicine, then I overdose on it. After straightening the leg, I manage to sleep after painkillers, but the funny thing is I wake up to find my leg bent back to its former position, gradually I ended up with fused knee. Now, do you think, love life or sex matters.”
Another ‘warrior’, Nnamdi Frank, from Abia State said thinking about erection is the last thing on his mind. He added that most ladies come around him because he is nice to them. But because of his health status, he thinks less about having sexual intercourse with them.
“There are more things to think about as a warrior than thinking about the pleasure of a woman’s skin,” he answered. “Though it may come at some time but it could be for those who their situation is mild. When I was still passing through the chronic stage, waking up every day and doing things without support, was my biggest prayer, not sex. I know a lady called Chidinma. She was nice to me but my situation at that time rarely brought such thought into my mind.”
Having a relationship with sickle cell carriers
Saturday Sun spoke with few people about having a relationship with sickle cell carriers. As stated by the ‘warriors,’ majority is afraid to get involved in that kind of relationship. Some are scared of the huge financial requirement while others are frightened of sudden death owing to heartbreak.
Initially, Munachi Onyeeze tried to give a positive answer as you chatted with her in the presence of her mum and sister. But she quickly recanted as they quickly countered that her partner could die untimely.
“I can’t marry any sickle cell man because those people know how to die without giving a sign,” she said “Even as I am AA, there is a big question mark on marrying that kind of man. For the man to be alive till the age of marriage, he must be rich and marrying such man, most would think I did it for the money.”
Tosin Akinyele, a chorister said: “I can’t dare it because there is no money to take care of her. Even if I finally do, I would not be happy in the marriage because you have to programme everything and be awake most night. Most men will cheat on such a woman. A sickle cell carrier will not satisfy my sexual urge.”