TALES OF COURAGE: Living positively with HIV and paralysis

There’s nothing about Juliet Otieno’s demeanour that tells you that she’s been through hell and back. The 36-year-old says her tribulations began in childhood when her father lost his job.

She was whisked away from a comfortable middle-class life in Buruburu and into Nairobi’s Carton slums.

“The eight of us lived in a single room and my mother washed other people’s clothes for a living,” she says.

Life in the slums came as a culture shock to her.

“It was really different. You would find people already drunk at 8am and teenagers were living alone in rented houses."

At first, people did not interact with us because we were from ubabini meaning Buruburu,” she says.

She attended Huruma Girls High School but was hardly ever in school.

“I was chased away frequently from school for lacking school fees. Sometimes I would spend up to one month at home,” she says.

However, she remained hopeful that getting an education would save her family from poverty.

WOULD BORROW BOOKS

“I would borrow books from classmates and read at home. When I went back to school I would top some subjects and the teachers would be astonished,” she says.

In 2001, Juliet met Paul*and they became fast friends.

He was HIV-positive but he concealed this fact from her.

“I was 17 and he was 26. The first time he asked me to have sex with him, I stormed out of the house.”

Paul continuously pressured Juliet to have sex with him.

“He told me that I was acting like a child. I was torn because I was so drawn to him. I couldn’t express myself and I didn’t want to appear as a child,” she says.

Eventually, she agreed to have sex with him.

“I remember hearing adverts about HIV and condoms but nobody talked about sex. He removed the condom in the middle of having sex and I didn’t know,” she says.

She contracted vaginitis after her first sexual experience. She was in constant pain but was afraid to tell her parents.

The common symptoms of vaginitis are pain and itchiness caused by the inflammation of the vagina.

The pain can become unbearable when one is urinating. Patients also frequently have a vaginal discharge with an unpleasant smell.

STAYED WITH DISCOMFORT

“I stayed for four months with the discomfort. At home, we had to choose to use money either for food or for hospital.

In August, it got worse and my mother had to take me to hospital. I did not tell the Catholic sisters about the discomfort. They treated me for malaria.

I could have been turning HIV positive at the time because my symptoms never went away,” she says.

Before doing her KCSE examinations, she went back to the hospital.

“I was treated for the STI and I was sent to a counsellor. The counsellor sent me back to the doctor for a pregnancy test and a HIV test. The pregnancy test was positive,” she says.

After one month, she received the results from her HIV test. They were positive.

“I cried for almost 30 minutes. I had wanted to abort but after knowing I was HIV positive, I wondered why I wished to live long while I wanted to end a child’s life. With the help of the counsellor, I started looking for homes where I could give the baby up for adoption,” she says.

Later, she made the decision to keep the child. She had scored a B- in her KCSE examinations but had abandoned any hope of enrolling to a university because of financial constraints.

“My mother found out I was pregnant when I was already seven months along. After that, I started accepting the baby and I even started saving up some money working at a hair salon,” she says. 

On June 11 2002, at 3am, Juliet delivered her child, in the cold, outside her parents’ house in the slums.

“After giving birth, women were panicking that the umbilical cord had not been cut but I was okay. The pain was gone. I even told them how to cut the umbilical cord,” she says. 

She was unprepared and misinformed about raising a child. Paul* remained unsupportive all through.

“I fed the baby cow milk at two weeks and porridge within one month. He developed sores around his mouth and he was in and out of hospital. At five months, he died,” she says.

She became severely depressed and struggled to rebuild her life after the baby’s death.

On August 19 2003, she got a stroke. She had stopped taking her prescribed medication to keep her family from knowing her HIV status.

“My mother took me to church to be prayed for and I stayed home for two weeks. Whenever I tried to speak, I forgot everything. They later took me to Kenyatta Hospital,” she says.

“I went for a CT scan in 2003 after the stroke and it showed that I had left brain infarction caused by Toxoplasmosis. Later in 2005 January, when I finally got enrolled in a clinic- Blue House MSF, I was started on ARVs immediately because I was classified as WHO stage 4 of HIV,” she says.

In HIV positive patients, a toxoplasmosis infection of the brain often presents symptoms of headache, motor weakness, fever and psychiatric symptoms such as confusion and depression. If left untreated for a long time, the infection can cause seizures, stupors, comas and even death. 

After the stroke, Juliet became paralysed on the right side of her body.

“I think if I had gotten therapy early I would have improved. My condition is now permanent,” she says.

She stayed at home for one year as she recovered but was withdrawn from everything around her.

“I thought, ‘God is not fair’,” she says.

Hearing the stories of Asunta Wagura, founder of KENWA (Kenya Network of Women with AIDS) and Joe Muriuki, (the first known Kenyan to speak publicly about being HIV positive) made her hopeful.

“It was inspiring that they lived normally even after declaring publicly that they were HIV positive,” she says.

Her future in advocacy began in KENWA where she volunteered and taught HIV awareness in the slums.

In 2006, through PAI (Population Action International), Juliet became a champion for condom use as a risk prevention measure against the spread of HIV.

At the time, the PEPFAR (President’s Emergency Plan for Aids Relief) programme was being criticised for supporting abstinence as the only way to curb the spread of HIV in Africa.

“In March 2007, I spoke in front of lawmakers, policy makers and civil societies in the United Kingdom parliament and the Canadian parliament.

Donor money only went to programmes that promoted abstinence but there were already many sexually active youth,” she says.

In 2012, ten years after losing her child, Paul* contacted her. He begged her to go and see him in hospital where he was receiving chemotherapy for skin cancer. His wife and children had abandoned him and the rest of his family barely supported him. 

Juliet was reluctant to see him at first but she eventually agreed. She helped nurse him back to health despite her painful past.

“I had forgiven him. I helped him until he finished his chemotherapy. After he was discharged, I didn’t go back to visit him,” she says.

In 2007, Juliet received funding from well-wishers at the Centre for the Study of Adolescents to pursue a university degree.

She studied Public Relations and Corporate Communication at Daystar University. She is currently pursuing a Master of Arts in Development Communication at the same institution.

Juliet works as a communication expert with an education technology company. She is passionate about helping young people navigate matters such as HIV/AIDS, sex and teenage pregnancy.

She was a cohort six member of Emerging Leaders Foundation and volunteered with Hope in Action and Daystar Compassion and Care Centre. She is also an accredited blogger for the United Nations.

She is currently writing her memoir that will be published in 2020.

In future, she hopes to meet the right partner, get married, have biological children and adopt a child.