When i look at this photo I see an object that has been in
contact with so many people living with HIV (PLHIV) who get debilitated by the
opportunistic infection, tuberculosis. The combination of HIV and TB in the
lives of these people causes a disability that makes them wheel chair bound, as
both virus and bacteria take over cells in their bodies via blood vessels, they
are unable to function as they normally would, becoming dependent on people
around them for care. One of such people is Melusi.
I met Melusi when i went to the Nhlangano health centre in
the shilseweni region of Swaziland. This was a 3 hour journey from the capital,
Mbabane, where i am currently carrying out HIV research with two organisations,
the Clinton health access initiative (CHAI) and the Swaziland network of people
living with HIV and AIDS (SWANNEHPA). On this day, Melusi was being pushed
around in this wheelchair by a nurse called Simpiwe. After a long conversation with Simpiwe i
found out that Melusi had been in the health centre for over 6 months. I tried
to have a conversation with him but he seemed very weak to make coherent
sentences. Simpiwe brought him out to get a bit of sun and fresh air and so i
sat there with him for over an hour. She was a nice nurse, not like the rest.
She seemed so passionate about caring for sick patients. She treated them like
she had a deeper connection with them, like family. I immediately realised she
was different from other nurses who went about their own way. Sometimes texting
on their phone and other times having loud conversations between themselves.
Simpiwe’s connection was simply based on the fact that she herself had taken
care of 3 family members who had HIV and TB. She felt their pain, experienced
their suffering and also got stigmatised both for having infected family
members and caring for infected family members.
Her passion for caring for HIV patients got sparked and she decided to
go to nursing school. This is why she connected so well with Melusi and treated
him like family even though he was just one of many strangers she has pushed on
that wheelchair.
I returned to the same health centre 5 weeks later and this
time, Melusi was sitting on a little rock outside his ward. He remembered me
and we conversed for a while. He is a truck driver and got infected through his
many sexual encounters by the border near South Africa. He has a wife and two
sons and couldn’t wait to go home to his family. His sons got kicked out of
school because they could not afford the fees and now they barely even eat a
meal a day. Poverty is the reason he took the truck driver job as he got to a
point where he could no longer cater for his family. He didn’t like being away
from home but he had no choice because his family’s survival depended on the
truck driver job he managed to secure.
Melusi didn’t know he could get any disease from having
unprotected sex and said he couldn’t afford to buy condoms regularly. He didn’t
complete his secondary education you see, because his parents also could not
afford to send him to school. He felt if
he knew of the virus he would have taken extra measures. He only hoped he hadn’t
infected his young wife, who also did not make it through junior secondary
school. He felt responsible for his actions and expressed how in a culture
where polygamy and extra marital affairs are not frowned upon, it’s very
difficult to be faithful to one woman.
Having been on Anti retroviral medication (ARV/ART) for some
months now, he felt so much better and was beginning to get his strength back.
Luckily, Melusi will not have to pay for his treatment as he gets them for
free. The Global fund cut didn’t mean he wouldn’t keep getting ART’s; luckily
he is a citizen of an African country where political will does exist as the
Ministry of health actually provides free ART for its people. Also, the
presence of international organisations like CHAI also means he will keep
getting access to ARTs. Without this free medication Melusi could have died as
his CD4 count before ART initiation was only 20. He had no clue he had HIV and
only came to the clinic because he kept falling sick. He was able to access the
clinic in just 30mins because of decentralisation of hospitals. Prior to decentralisation, it would have taken
him over 2 hrs. Now there is a health centre in every rural district in
Swaziland where PLHIV could get free access to ART. Melusi has decided to
dedicate his life to HIV advocacy. He has decided to join the network of PLHIV
to work as an expert client. Local
organisations like SWANNEHPA will ensure he gets empowered and his rights stay
intact through his journey. They have been working very hard to reduce stigma
and discrimination of PLHIV and Melusi seemed very happy about his future
prospects.
As Melusi was telling me about his life plans when he leaves
the health centre, another young man was being wheel chaired into the TB
ward. He was very frail and had just
bones left on him. Melusi knew who he
was. In a country of just 1 million people where 70% of them live in rural areas,
it was not surprising. They live in the same region and probably also have the
same socio economic situation surrounding them.
As the wheelchair went past me with this young man in it, I hoped that
his story would be very similar to Melusis’. I hoped that his happy ending would include
HIV advocacy and empowering of other PLHIV. Unfortunately my hopes were
shattered as right in front of me; on that same wheel chair this young man lost
his life. As the retrovirus took over
every cell in his body and his throbbing heart came to a screeching halt, so
does this story. I can’t say i have been the same ever since.
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