Shirleen Kavugwi* (not her real name), is a girl whose heart is full of melancholy. A girl whose mother passed on over a decade ago due to HIV related complications but no one told her. She later on learnt that her father was also infected but not a word was said to her. This is just the tip of the ice berg.
Meet 20 year old Shirleen, a form two girl in a local secondary school. She is HIV positive and a mother to a resplendent one year old girl who is HIV negative in Gambogi in Vihiga Western Kenya. Her younger sister a student in a local boarding primary school is also HIV positive. I am informed that at times, Shirleen feels dejected because no one in her family to date has had the courtesy or rather courage to face her and her younger sister to break the heart wrenching news.
I and Catherine Boge- her care giver – make our way the secondary school she attends in order to get her story, but she is absent on this day. One of the teachers informs us that she did not report to school and they have no idea why. I inquire from Catherine if the school is aware of her situation.
“As a care giver, one has to be very careful with the information they relay to all and sundry. No, the school is not aware. Even some relatives are in the dark about her situation. She is the only one who can allow me to divulge any information about her status. Considering that she is a young girl, the only way that care givers ensure that they win the confidence of children who are infected, is to win their trust by keeping their word on the promises they make to them. I ask her before I do anything that might affect her life. In the rural areas, stigma is something that we are still dealing with and one has to be cautious. Even the organisations that I work for do not know the private details of the children that I am responsible for. This creates a level of confidence,” Catherine stated.
Catherine is a care giver with Care Kenya and AYODEF. Care givers who are sometimes referred to as social workers are people who have been trained and empowered with sufficient skills that enable them to identify families faced with the HIV scourge, counsel them, empower them and ensure that they get sufficient care which uplifts their spirits. They try as much as possible to ensure that they lead vitally normal lives devoid of the stigma that is associated with HIV especially in the rural areas. Care givers are affiliated to the various Community Based Organisations – CBO’s – . Care Kenya in this instance is where Catherine is based at as well as AYODEF- an Awareness Youth Development Foundation; a community based rural youth organization involved in community based initiatives and integrated rural development in western Kenya.
One of the key programmes under AYODEF is community health and here they focus on various initiatives that seek to counter the HIV/AIDS prevalence. They focus on the establishment of nutrition gardens, planting of nutritional crops, strengthening of community units to integrate HIV/AIDS under the government’s community strategy as well as partnering with other like-minded organizations.
These organisations assist the affected families with basic necessities and especially for the poor families that have no means of survival also considering their situation. Uniforms for the school-going children, soap, and other basic necessities just to support them are sometimes distributed to the families.
We decide to go and check if she is at home and we find a very pleasant petite girl in her father’s compound playing with her daughter. She informs Catherine that it was her day to go to the clinic to take her medication and felt that she could not make it to school. At first she looks scared and is not ready to open up to me. But with time after banters here and there, she warms up to me and we talk freely. She informs me that in the first few months when the news was broken to her on her status, she was scared, felt lonely and did not know what to do. She was very angry at her dad for not telling her anything and her younger sister too despite being well aware of their situations from the onset.
“It was a scary period in my life. I only came to learn some 6 years ago that my mother who passed on while I was in standard 4, in 2001 was HIV positive. My father is also HIV positive, I and my sister are also infected yet my father who is our closest family had never bothered to call a meeting and inform us of our conditions. A few years after my mother died, an aunt of mine took me to Mombasa to stay with her but I kept on falling ill. I decided that it was better for me to come back home and when I went for some tests, my status was revealed. Catherine who is like my big sister has been there for us and she has walked with us through this journey and we shall forever be grateful,” she stated.
She takes her medication well. But Catherine informs me that her younger sister who is in a boarding school is not as consistent as Shirleen as she sometimes refuses to take her medication and has not yet accepted her condition. She is also scared that since she is in a boarding school other students may notice and segregate her.
Shirleen says that despite other people experiencing harsh side effects from the Anti Retro Virals (ARV”), she has not experienced much. Although she has had issues with one of her eyes, she says that she is faring well. She however, says that her social life has not been the best that any child would have wished for.
“For a child my age, it takes a lot of courage to tell people about my condition. The fact that we are faced with stigma day in day out makes it difficult to disclose my status to many people unless I trust you. Infact, only a few relatives know about my condition. I still ask myself many questions and wonder why my father has not taken upon himself to just tell us and this has strained our relationship very much,” she stated.
Catherine says that Shirleen and her sister have complained to her on numerous occasions as they feel like they are ready to face their father and ask him the difficult questions. But she adds that she has tried tries to speak to them to wait a bit as their father might feel like a failure. That it would be wise to wait until he gets the courage to sit them down and have a chat with them rather than confronting him.
Shirleen comes from a well-to-do family and thus do not need much in terms of financial support from the CBO’s. Her father is healthy and Catherine says that she can only pray that he gets the courage soon to talk to his daughters before they do. The fact that she has given birth to beautiful girl, should give him the courage to face his fears.
“The girls are well knowledgeable. I have taught them all I need to teach them so that they can live healthy lifestyles. I know how bad the opportunistic infections can do those who are infected as they are actually what kill many people and thus I have informed them that anytime they feel unwell, they should go to the hospital immediately. They also know that it is important for them to strive to eat very healthy meals and that I know is not a problem at all. They are good girls and they listen to me,” she stated.
Over a year ago, Shirleen delivered a beautiful baby girl *Natasha.*. She delivered through the Caesarean delivery and she is a very healthy bay. She stated that she followed all the instructions from the hospital from the time she realised that she was pregnant until she delivered.
She is also part of a support group and they meet regularly. She attests to the fact that the groups are very important as they act like a family as they are faced with similar circumstances.
“The groups make us feel that there is hope for the future considering that many people have lived with the condition for a long time. We see a hope and a future in such groups. HIV does not mean a death sentence for anyone,” stated Shirleen.
Catherine also is part of a National Aids Control Council programme known as TOA – Total war Against HIV/AIDS that is concerned with ensuring that less infections are experienced in the region.
Her story reminded me of a recent debate in an f.m station about the young generation sometimes referred to as generation “Y”. “This is a carefree generation, they are not afraid of death. Infact many say that they have seen most of their friends die due to drugs, drunk driving and other causes and they know it’s just about time before they follow suit and thus the carefree attitude,” retorted the presenter.
I ask Ms Catherine about the father of the baby and she confides that Shirleen divulged to her that the gentleman knew of Shirleen’s status from the onset. She does not say anything more about the situation. If the man has gone for testing, or he is planning on marrying is a story that we may not be privy to now.
Shirleen’s case in just one of the many that Catherine has dealt with. She has worked with various organizations where she has acquired a plethora of experiences with regards to HIV issues and this has made her one of the most sought after care giver in Gambogi.
She has worked with Orphans and Vulnerable Children. (OVC’s).People Living with HIV/AIDS. (PILOHAS) and she is also a coordinator for the National Aids Control Council NACC – in the region. Despite her many activities, she still takes care of people infected with HIV as she has diverse experience on home based care. She also trains other people on the same.
She has been in the forefront especially in ensuring that the rights of the orphans come to pass and ensure that when parents succumb, the orphans do not disintegrate as relatives have been known to take over their estates.
They ensure that the orphans stay put in their various homesteads until they are old enough to take care of themselves. They also ensure that the orphan’s property is not distributed amongst the relatives. If a relative is entrusted with the welfare of the orphans, they check on them from time to time to ensure that they are comfortable.
She has also been involved in other activities like the feeding programme for the OVC’s.
She says that many people in the rural areas are still in denial about HIV.
She has trained women on how to take care of themselves, something that she is very proud of.
“Every time we meet and their CD4 count is low, they know I will be hard on them. So they do all they can, that I have taught them to ensure that their CD 4 count is high. I tell them not to be stressed as this is what may kill them. I have to say that all the women under my care are very healthy and they are leading fulfilling lives,” stated Catherine.
The growth of HIV positive children is sometimes hampered and they can take a longer period to develop.
“A 20 year old girl may look like a teenager. I have also dealt with cases where the children have refused to go back to school for fear of stigmatisation. Other parents have even been known to discontinue their children’s schooling as they see no need for paying school fees to persons whose future is not guaranteed,” stated Catherine.
The moringa tree which is famed for treating over 300 illnesses is a nutritional tree that they have encouraged many people to plant for its nutritional and medicinal value.
“There was an instance where a child took a mixture from the tree and after sometime, the child got tested and was found to be HIV negative. I cannot ascertain fully that it was moringa’s sole action, but I am certain that the tree had a great deal to do with the results. Infected persons normally start to take the Septrines- ARV’s – when their CD4 cells count is below 225.What they do is basically to deal with the opportunistic infections,” added Catherine.
If and when Shirleen’s father faces his fears and resolves the issue at hand, is a story for another day.
By: Fiona Imbali, OAIC Communications