Girl with a thorn: She overcame hopelessness to inspire thousands - Daily Nation

Girl with a thorn: She overcame hopelessness to inspire thousands

Sunday November 25 2018

Edelqueen Shioso.

Edelqueen Shioso during the interview in Nairobi on November 23, 2018. PHOTO | DENNIS ONSONGO 

By ELVIS ONDIEKI
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With the alarming rates of teenage pregnancies and statistics of teenagers and adolescents being more scared of pregnancy than acquiring HIV, a book launched in Nairobi yesterday titled Girl with a Thorn is a memoir anyone would want on his or her shelf.

In the book, 30-year-old Edelqueen Shioso describes how she had to deal with what she calls a thorn at the tender age of 14; a thorn that pricks her and which she has ensured that it pricks no one else. Edelqueen, or Queen as she is popularly known, is an alumna of Kenya High School, a researcher from Moi University, a government officer, and the founder of Queen’s Camp, a programme that offers mentorship to young people.

"It's a story for you and me, and the realisation that everyone has a thorn but what is more important is not letting the thorn deter us from living, learning, laughing and loving," Queen told Lifestyle.

Read the extraordinary story of her journey as told in excerpts of her book Girl with a Thorn, published by Aura Books.

“My self-confidence was fully restored by the time I was in Form One. Life was good, or so I thought. Little did I know that it was about to take a new direction.

I got very sick towards the end of the first term of Form One. I had malaria, influenza and mouth ulcers — all at the same time. My lips were swollen and there were big boils all around them and inside my mouth. Taking hot or salty food was unbearable. This earned me an admission to the school’s dispensary for almost a month. While at the sanatorium, my friends would visit in the evenings and update me on what was happening in the school, alongside bringing me their notes for me to copy and read.

Just after recovering from the ulcers and being discharged, the right side of my waistline was invaded by big watery boils that were itchy and grew bigger by the day.

A few of the boils burst as I tried to itch, and the fluid spilt over to unaffected areas; the boils spread. At first, I thought it was one of my “usual” skin conditions but I came to realise I was wrong, it was a cause for worry. The only person who saw the swellings was my desk mate Faiza Abdikarim, who got scared and advised me to go back to the sanatorium.

One look at my waistline gave the school's nurse a scare which made her scream so loudly that I was terrified. Afterwards, she just stood there dumbfounded unwilling to touch or examine me. I wondered what would scare such a professional nurse.

I thought that she should have been used to seeing conditions like mine, or even worse, and should have acted in a cool and professional manner. It made me feel like I had leprosy. I stood there as millions of questions flowed in and out of my mind.

Luckily for me, the school doctor was around, and she rushed into the triage area to see what had transpired. She made me sit down as she calmly and closely examined my waistline.

Then she sat down quietly and scrawled a few words on paper.

I couldn't take it anymore. Anxiety was choking me to death. I had to know the name of the disease that had the nurse frightened out of her wits.

“You have what is medically known as herpes zoster,” she said. Even though I didn’t understand what that meant, I knew it was serious from the look on her face.

“Queen?” She called out my name and then paused for a minute while trying to get the right words to say. “Do you have a boyfriend?”

She looked at me intently, trying to gauge the sincerity of my answer. I was shocked by the question and wondered which angle she was taking.

I am 14 years for goodness’ sake, what would I do with a boyfriend, or does she mean my friends in Kasarani who come to greet me sometimes? “No!” I responded.

“Have you ever had sex with anyone before?” she continued.

Oh, good gracious God! Where is she going with all these? “No!” I responded.

“Can you remember being sexually assaulted at any given point of your life?” she pressed.

Whatever disease I have is related to sex and boyfriends but rape, none that I can remember. I don’t have a weird uncle or neighbour. Even my male teachers have been saints.

“No”, I retorted as my eyes filled up with tears. I could not help myself. I wasn’t stupid to not be able to understand the direction the doctor was headed, especially when she started explaining to me the relationship between herpes zoster and HIV/Aids.

She then insisted that I take an HIV test. I knew what the doctor was trying to tell me. There was a huge possibility that my blood could be hosting the then dreaded HIV! I was quite informed about the disease and the virus.

I had been curious about the disease that made my skin scaly and in the process of reading materials, I stumbled upon the symptoms of HIV; that was how the suspicions began. The problem my young mind had, however, was comprehending how the virus, if it was true, got into my blood. I ruled out all the possible ways — even mother-to-child — because I did not know then that my parents had died of Aids.

On their death certificates, their cause of death was cancer. I also ruled out this option because, at that time, babies who were born with the virus seemed to die before attaining the age of five or shortly after celebrating their fifth birthday. The fact that I was way above that age convinced me that it was impossible to have contracted the virus from my mother.

I always managed to convince myself that there was no possible way that I could be infected and that I just needed to relax. I even found a way of explaining to people why I often fell ill.

That I was born with a low immune system and that I would be fine after attaining 18 years of age. Then, 18 years seemed like a dream. The suspicions ran through my mind whenever I had a new attack on my skin, but I never allowed them to last long. I would quickly brush it off, convincing myself that there was no way on earth I could be infected.

My suspicions grew stronger after finding out about my parents. I even remembered my brother Anthelia, who died before attaining five years of age. He was always sick, and he always cried before he passed on. I kept wondering why I did not die like my brother if I also contracted it vertically. So, I still managed to come to a verdict: There was no way I could be infected. It seemed like a nightmare almost turning into reality, like my worst fears were about to be confirmed when I sat at the sanatorium and had the doctor ask me those questions.

The doctor had a difficult time trying to convince me to go and test for the virus so that she could be in a better position to prescribe treatment for me. Half of the time I was crying and the rest of the time, I was saying ‘No’ to her. “No doctor! I don’t want to test!” I retorted.

“I know I am negative!” I kept cutting her short. “Very well! Why don’t you take a test to confirm your negative results?” She said after giving me sometime to cool down.

“No! No! No! I don’t need a test to confirm it! I just know I am negative!” There was silence in the room for some time before the doctor asked the next question.

I was nervous and the thought of taking a test was unbearable. She gave me some time to cool down and then asked me to tell her the reason why I was crying.

That silenced me for a while as I tried to internalise the reasons. Then I broke down again, that time more heavily than before. I cried for two reasons. First, I couldn’t believe that moment and those questions. I was in shock and the only way I could express it was through tears. Fine, I had suspected it but that was something I never really thought could come to reality. I used to conclude that my wild imaginations were playing tricks on me whenever I thought of it.

In my mind, people living compromising lives sexually were the ones to be asked those type of questions. Secondly, I was scared that my worst fears were going to be confirmed. I had never shared with a single soul about my suspicions, not even with my own sister!

Edelqueen Shioso.

Edelqueen Shioso reads her book during the interview in Nairobi on November 23, 2018. PHOTO | DENNIS ONSONGO

***

While I was counselled in the first VCT we went to, I kept a very brave face because I knew I was negative, or at least that was what I had managed to convince myself.

Then came the question, ‘What will you do if the test comes out positive?’ and all hell broke loose. My mind and brain could not handle the intensity of the question.

At that time, being HIV positive meant death because ARVS were not available in any government clinic and they were very expensive; only the rich could afford them. I knew I was as good as dead were I to test positive because my sister was already struggling to just cater for our basic needs.

The drugs’ expenses would weigh her down. Considering all the factors, that question prompted me to scream, “I know I am negative!”

I could not be tested in that state of denial and so we left that VCT centre. I cried uncontrollably and everyone who was at the waiting area stared at me. Perhaps they assumed I had tested positive and wondered how I had contracted the virus.

At that age, I had a small body, one would think I was nine or 10 years old. Although I knew some people empathised with me, I was sure most of them thought the worst of me.

 

***

Things did not change when we went to the second VCT centre. Whenever the killer question was asked, I had an uncontrollable fit of tears. At the third VCT centre, still in the same state, they refused to test me, citing that I was too young. My God!

 

***

There was a satisfactory look on Dr Maimba’s face when I told him about my parents. He didn’t mince his words. He told me that taking the test would give him a chance to help me in the best way possible. Having said that, he handed the school nurse a laboratory HIV test request form and directed us to another hospital where the test was to be conducted.

He did not bother asking for my consent like Dr Karanja had done.

The tears started rolling but I decided not to overdo it and instead, use the power of positive thinking to give me strength to take the test. I thought of what the school doctor had told me after the herpes zoster attack and assured myself I was going to be fine.

It was sort of an impromptu test and so my sister did not even know that I was finally going to get the test done. I got lost in my thoughts as the minibus rode off to seal my fate.

“Queen, calm down, you haven’t had sex with anyone,” Mary told me.

 

 ***

Tuesday morning was a dull day. I could not hear the birds chirping as usual. Only the crows cawed, which according to my people was a bad omen. The sky was covered with dark clouds, unlike the heavenly cotton-like clouds and clear blue sky. We left school for the results at about 2pm. The nurse was given an envelope from the testing centre which was to be ferried to Dr Maimba’s office while sealed; to be opened only by him. I felt tortured psychologically, wondering for hours what the envelope contained. I wanted to grab the envelope from the nurse and open it myself. It was nerve-racking.

He didn’t waste a lot of time with preliminary counselling and bla bla bla! He went straight into it.

“You are HIV positive,” he said and then started scribbling things only he understood. I did not believe my ears and so I asked him to repeat.

“The test is positive,” he said without a hint of shock on his face.

I don’t know how I got hold of those papers from his hands but in a fraction of a second I had the papers in my hands so that I could read the results for myself. It read: “HIV antibodies positive”.

I slowly absorbed the news as tears started streaming down my cheeks. I might have been lost in my own thoughts for some time as I internalised what that meant such that when the nurse touched my shoulder in a bid to comfort me, I let out a loud sharp cry.

Dr Maimba’s secretary broke into the office saying she thought someone tried to commit suicide by jumping through the window. His office was on the ground floor. I felt hopeless.

I cried, cried and cried. The more Dr Maimba and the nurse tried to console me, the more I cried. I thought they were being very insensitive by asking me to stop crying.

A swell of anger swept over me. I blamed everything that was happening on my late father and his lifestyle. I cried tears of sympathy for my mother and myself for being victims, I cried tears of anger to God for failing to rescue me from that situation.

***

I stopped pitying myself the moment I was given my first dose of ARVs, which costed about Sh5,000 at the time. My will to fight and stay alive was rejuvenated.

There were weak moments when I would still break down, but I just wiped off my tears and continued studying.

***

Later, I found out that the school principal got scared when she was informed, and was ready to turn me into a day scholar because she thought I would need special attention.

She was so understanding when the nurse, alongside my sister, explained that isolating me from the rest was probably not the best way of helping me. She empathised with my situation to the point where I owe her my first dosage of ARVs.

She also made sure I had no problem getting out of school for my appointments.

I know she had the image of the school to protect and might have worried about what people would think when they saw a Kenya High School student leave the Comprehensive Care Centre at Mbagathi District Hospital with bottles of ARVs.

Still that did not stop her from acting in the noblest way any principal would. She overlooked it and helped me get the medical attention I needed.

***

Life changed. I knew that there was always hope and it wasn’t over for a person until that person decided it was! I knew that I called all the shots when it came to whether I die young or live long; even though I acknowledged the presence of a higher being taking care of me.

Fight to be alive is what I vowed to do from the moment I was told there was a programme called MSF — Belgium at Mbagathi District Hospital in Nairobi that would provide me with free anti-retroviral drugs so that I wouldn’t have to succumb to the disease after a short time.

My sister, through her networks learnt of the programme which was the first to start providing free ARVs to HIV infected people.”

 

©Edelqueen Shioso, 2018

 

For the complete account of Queen’s remarkable story, get her 179-page book, The Girl with a Thorn. Email: [email protected]

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