My Name is HIV

My name is HIV. I spend my time spreading from person to person bringing sickness and despair. In Uganda I have a battle on my hands, because of TASO (The AIDS Support Organisation). TASO spends his time telling people how to keep me away, and how to fight against me if I get into their bodies. TASO even provides free drugs to increase people’s capacity to live alongside me.  I bring stigma with me. Stigma leads people into fear and isolation, tells them no-one can ever love them and no-one will want to be near them or share their lives. TASO tells them they have hope and a future, TASO tells women they have special HIV nurses who can help them carry a baby who will not have to live with me.

*I try to win and take over people’s lives, leading them to sickness and death. People do not want to be tested to see if I am there, they do not want their neighbours to see them spend time with TASO and find out the truth.  Many people cannot access TASO because they don’t have transport, they are too sick to walk any distance, or TASO does not have outreach clinics in their village.  Taking medication every day is hard, particularly for children and young people.  Young people become depressed, believing they have no hope because people won’t want to employ them or marry them.  They stop taking their medicine. Some even commit suicide.

I have another enemy, Global Care (GC). GC loves vulnerable children so all their children are tested by TASO, to see if I am there.  If they find HIV, TASO follows them up, GC gives them extra nutrition, helps the family with healthcare costs, and makes sure children take regular medication.  I am losing the battle with GC sponsored children.  However, I have a new friend.

Meet HepB (Hepatitis B). HepB is starting to spread, and often targets my people – with HIV/AIDS.  People can be tested for HepB. If negative, they can be vaccinated to keep HepB away. Many people cannot afford testing, and more cannot afford even one vaccination, never mind the course of 3 they need for full protection, or boosters. If they are positive, before they can get treatment, they need further tests – which cost 100s of shillings.  Even if they can afford the tests, they then have to pay for medical counselling and a course of treatment. This is where HepB really wins – HepB medication is not free. So, if someone with AIDS has HepB, or someone poor, the future is bleak.

HepB is also good at stigma and isolation.  Many government jobs require HepB testing. If you are positive, until you have completed a course of treatment and been re-tested, you cannot work in health, catering, or schools.  Some people bribe unscrupulous lab technicians to lie about results. We like them! HepB is easily passed from person to person – much easier than me.  HepB is carried in sweat and saliva so the chances are that if HepB gets to one person, the whole family will be infected. Hiding HepB is as deadly as hiding me – if you can’t afford the tests and treatment, you will eventually have an early death.

GC don’t like HepB either. They test all their staff and children. They vaccinate if results are negative, they pay for treatment if someone is positive. They have tested over 140 children, plus family members. Tomorrow they are even travelling to a school for the deaf to test sponsored children. These children can’t get to the Soroti Centre.  If the children aren’t at school, they will visit homes and find them. They are determined that HepB will not take any lives from their children. The staff at GC went to fetch a child who is on crutches, rang schools, contacted parents, made radio announcements – anything to reach their children.

A healthcare worker said today, ‘It is better to be poor than have sickness in your family in Uganda.’

We really win when poor people are sick.

*Please note, to my knowledge, none of the people in these photos have AIDS or HepB

Shots and Tots

……. and breathe……

We’re still on the subject of healthcare, but today is about positive action in this challenging environment.

Today, 111 children were tested and if appropriate, vaccinated against Hepatitis B. 

Hep B is becoming a major problem in this area. The team from the Baptist Church Medical Centre, who came to carry out the programme, tested 6,000 people in one district, and 400 tested positive. In one village, out of 800, 44 had Hep B, and in 4 families, more than 4 people have the disease.  I also discovered that Hep B is so contagious it is transferred by any bodily fluid – including sweat.  A lot of sweating happens here. It’s very, very hot.  Because of this, children are particularly at risk as they often share a bed, or swap clothes.  If an adult is found to have Hep B, the primary source is frequently a child, the only other positive person in the family.

It was great to be involved. I was on ‘administration’ with Hope – which involves one printout and lots of tiny bits of paper - on which we have to handwrite children’s names and reference numbers. I was crying for a spreadsheet and printer by the end.  I just wanted to press ‘find’ for a number, not scroll manually through over 200, in no logical order! Most of the children were Ok with ‘having a prick’, though we had a few tears and a couple of screamers.

The children in the Ark were tested for HIV and Hep B. Tom was on Ark duty today. Tomorrow we repeat the whole process again.

At lunchtime we had a break and visited the home of Fred and Viola, familiar friends to some of you. I think we’re going to put on weight this week – it was a feast.

Another treat today was meeting one of our sponsored children, and 2 children sponsored by friends at our church. It’s great when you actually meet sponsored children.  Even better when you ask, ‘Do you know your sponsor’s name?’ because you think you recognise the child’s name, and they reply, ‘No, but they have two sons called Tom and Noah.’  Love it – they really do read your letters!

We also finally visited the wonderful Amecet today, and their ministry leader, Els. The YWAM home currently has 28 children. There was 1 very sick premature baby on their medical unit, I think 4 tiny babies, and another 5 slightly larger babies (they all looked miniscule to me).  Most of these babies’ mothers died during birth.  After a few months, when they are strong enough, the majority will be reunited with their family.  They also take children referred by the police for child protection reasons. The babies and toddlers all had quilts on their beds – thank you so much to those of you who sent them.

Els says they are looking for nurses – so if you fancy a few months volunteering at Amecet and you’re a qualified nurse, we’ll put you in touch!

This was all a great encouragement after yesterday. Seeing hope and healthcare in action.  A Hep B test and vaccination are not free – GC is funding the programme.  All the staff have been tested and the majority already completed a vaccination course. The medical team today offered a reduced rate for families of staff members – it usually costs around £6 per person, the same as a night in a cheap hotel.  It was a privilege to be here and see it happen, I never doubt the truth of what GC tell us as supporters, but I can vouch for it too.  It is also fantastic to see the work of other NGOs, to meet incredible people like Else, who have literally laid down their lives for sick children.

It doesn't have to be this way

I’m taking you to a place that reeks of suffering and pain.
The fetid airless rooms swelter as the sun hammers down on the walls and roof.
Rooms jammed with beds and people, sometimes on the floor.
Senses suffer with the overwhelming oppressive atmosphere.
People queuing on seats, on the floor, in doorways.
Families outside in the shade, washing clothes, cooking food.
The smell of decomposing wounds causes me to stifle a flinch.
My whole body feels the weight of decay and desperation.
It feels like my worst idea of a field hospital in a war zone.
It’s the district referral hospital in Soroti.
The only option for people who can’t afford to travel.
The only option for people who can afford hospital treatment.

A place where babies and children with fractured limbs lie in traction for weeks.

Where a child with osteomyelitis is stabilised so he can go home, the likely source of his infection. He’ll return when the one orthopaedic surgeon has space to operate.

A man’s diabetic gangrenous foot decays – how can he afford treatment or surgery?

Children with malaria, HIV, anaemia, malnutrition, cram together, sharing beds

A homeless man on a trolley, parked in a corridor, slowly dies as his leg rots. He has a compound fractured femur. He has no money and no family, so no food, no painkillers, no possibility of conservative or surgical treatment. 

I can’t sanitise the awful truth.

I can’t pretend this isn’t happening.

The hospital only has paracetamol, septrin (used to treat infections), and antihistamines readily available.

Doctors write prescriptions for other drugs, relatives go to town to buy the medication.

You have to pay for every test, doctor, operation, aftercare, medicine, night in hospital.

Many can’t afford it. 

And they die.

This is the reality of secondary healthcare for people in this County.

There is no primary healthcare.

This is the reality of healthcare in many poor areas across the world.

I want to run away.

I want to help.

I want to capture the horror, take it away on my sd card.

I can’t bear to photograph people’s suffering, exhaustion, fear.

But there is a glimmer of hope - people with courage and vision.

A physiotherapist working with GC to try and find a way to provide physio for children at the Ark, and advice and training for staff and guardians.

Doctors and nurses struggling with minimal testing and investigative facilities, developing ingenious contraptions for children to share oxygen as they don’t have enough concentrators. 

Families coping with the challenges of looking after children with disabilities.

Single parents and elderly grandparents coping with the added burdens of preventative health measures - good hygiene, nutrition, bathing, extra laundry, check-ups.  But without easy access to water, no transport, no mobility aids for the child, no source of income.

Staff at the Ark who provides guardians with opportunity to work, and disabled children with a safe, secure, loving, healthy environment, and nutritious food.

An uncle who carries his disabled niece twice a day along narrow paths to meet the Ark bus – a path too narrow for transport. She doesn’t have a wheelchair.

The awesome Atiira disability action group who work incredibly hard to create income generation schemes for their members – all of whom are disabled or care for disabled children. 

Staff at GC who rescued a sick child and took her hundreds of miles for specialist surgery (funded by GC).

I took some photos. I won’t run away. I’ll try and do something.

Three Meetings and a Funeral

I am sitting in the shade at our guest house with my cup of African (spiced, milky) tea, after a long day of meetings. I was greeted this morning by the offer of a school table, having blogged yesterday about the lack of surfaces in our room – one person is reading my blog apart from my mother… There are morning prayers at the start of the day, and I’m beginning to think someone’s trying to tell me something.  Today’s message was about humility!

We started today planning our programme, and catching up with Hannah, who has been helping out at the Ark disability centre.  Our timing for a Soroti visit is not perfect. Firstly, Hannah has been called to Kampala to complete immigration formalities. When they call, you go. Hannah and her husband Aaron work for US charity, Water for All, which partners with Global Care in Soroti. Hannah’s background means that she has been able to support the team at the Ark with practical and administrative ideas. The most impressive of these visually, is a walking frame, designed by Hannah, built with local materials, using the skills of the GC tailoring workshop, and the welding facility at Water for All.  It was great to see it in use – children we haven’t seen standing on their own before, now able to move freely in an upright position.  

Our second clash is with a Hepatitis B vaccination programme. Deaths due to Hep B have been increasing locally, so the team have arranged for all the sponsored and Ark children to be vaccinated (it’s not free).  This will take place on Thursday and Friday, then on Saturday we’ll visit the school for the deaf, so sponsored children there don’t miss out.

Today we looked at how to evaluate the impact of the programmes here.  It is exciting to hear the staff talking about their aims for vulnerable children in Soroti. There’s a real desire to see households lifted out of extreme poverty, and for children to gain education and skills for self-sustainability.  The team's heart is to build self-esteem, raise expectations of families and children themselves, and counteract negative attitudes towards those who are poor or disabled.  They want to empower sponsored children to believe that like others before them, they can be leaders, doctors, lawyers, teachers and managers.  Inspiring stuff!

We haven’t had much time to visit the Ark today, but we managed to greet the children and staff. They loved some of the sensory toys I took, although not everyone appreciated the fluorescent flashing hairy rubber caterpillars.  We had a great time discussing long-term plans and ideas for the Ark. Once again I was impressed and humbled by the love and care of the staff for children with severe physical, sensory and intellectual disability.  There are many challenges working with this group of children, but the team want to tackle them, and ensure that children are not isolated or neglected at home.

Some of you have been a tremendous support and encouragement to us, so here’s a quick update:

S had her operation last Monday and the fractured bone has been plated at a hospital in Mbale. It will be another week before the biopsy results come back.  Thank you so much again to those who donated for her surgery. There will be aftercare and rehab to follow, and probably more treatment – so watch out, more fundraising will take place.    

      Thanks for the clothes. Most of these were given out in Rukungiri after seeing such terrible need.

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•        Thanks for the sensory toys – I can’t wait to have a proper session with them later in the week.

Thanks for the footballs and Frisbees – mostly given to schools already, but I have a few left for here and Kampala

Thanks for the quilts made for the babies at Amecet. This was our worst timing. As they are near the guest house, we called in on the way home.  Unfortunately, a baby died today. It is a common occurrence at Amecet so they told us we could go in and see the manager.  Imagine our horror when the girl taking us in said, ‘Please, you can come in’, and we found ourselves in the baby’s room, the grieving mother at the side of the cot. The tiny baby coffin was on the floor waiting for the body.  We arranged to go back another day…

That’s the reality of life here – and we know we are going to have to face it. It’s great to see our friends, and spend a day listening to them planning and evaluating, being encouraged by their dedication and love, excited by the way they work together supporting and appreciating each other. But the reason for it all is the extreme poverty and vulnerability of children with no hope. We have to understand where they have come from, to understand why GC is so effective in changing lives.

It's not about me

Here’s a question - why was I so surprised to find a quality hotel in Uganda?

I’ve been mulling this over during our postponed game drive this morning, and our journey to Soroti. The Safari Lodge was probably the cleanest hotel I have ever stayed in anywhere, including the ‘public’ toilets!  The staff were definitely the most helpful and friendly – they couldn’t do enough for us, and sorted our trips and gave us advice with good grace and lots of smiles. They treated Charles exactly the same as us. The catering staff were the most accommodating and flexible we’ve come across in a hotel, in relation to Tom’s awkward diet.

It just wasn’t what I was expecting. We’re now installed in our guest house in Soroti with a trickle for a shower, a cramped room with no bedside tables or any drawers, electric wires hanging off the wall – but its clean, the water is hot, we’ve had a good meal, the bed is comfy, and there’s free wifi. And guess what? The people are friendly and helpful.

So maybe I have some sort of prejudice – an expectation of poor quality and an inability to provide what foreigners expect. How wrong. They do it much better here than the place we stayed for 2 nights in Tenerife.  We may have had problems last year – but when we were prepared to pay what we’d pay in the UK we got something far, far better.

But the main factor is the people.

I think I need to go back to where we started in Rukungiri. As we visit people here and spend time with the disabled children in the Ark, I need to consciously treat them with dignity, humility and respect each and every adult and child.  No preconceptions, no poor expectations, no patronising attitude, no self-righteousness or superiority. It’s not about me.

Yesterday I read this in my daily devotional notes: ‘There is the hidden face of God in the faces of widows, orphans, strangers, aliens, prisoners, refugees, immigrants, the hungry, the thirsty, the sick, and the naked of the world around us (Matt 25:31-46)’. The author went on to suggest that these vulnerable groups are so special to God, they have almost divine preferential treatment. The most challenging idea was the proposition that caring for the marginalised is not only a true expression of faith, but likely to be the greatest factor taken into account on the day of judgement. I have a lot to learn about caring for the most vulnerable in society here and at home. It starts with dignity and respect, moves to listening to, not deciding what’s best for someone, and definitely goes as far as sacrificial service. 

The people in the hotel went above and beyond to make us comfortable and relaxed. Do I do the same for everyone I meet, whatever their circumstances?

And for my friends who love them, a picture of giraffes from this morning!

Falls Trek Voyages

Captain’s log, trip date 2^nd October 2016.

After completing formalities in triplicate, we boldly went in the Kichumbanyobo Gate, and drove the red path of the rainforest.  All we could see for nearly an hour was dense forest with local baboon lifeforms, who greeted us by showing their red bottoms. Delayed at the start of our journey, we failed to catch the planned transporter across the Nile, and waited 2 hours at Chilli Rest Camp for the next one.  Eventually the cumbersome, flat yellow ferry made slow progress across the fast flowing river, avoiding schools of hippos guarding their young by the bank. No-one said “She’ll no’ make it captain!”

We arrived at our destination, the planet of Paraa Safari Lodge. 

This is unlike anything we have previously encountered. Rich white people stay in beautiful, smart rooms, with every required amenity. Ladies wear short shorts and tight jeans – something we only encountered in Kampala before.  The temperature on arrival was almost unbearably hot, but there was a swimming pool where we could cool down.

There is too much food! We were instructed to take lunch before going to our rooms. Lunch was nearly over, but there was still a plentiful buffet of Ugandan, Asian and Western food. Charles sleeps with other drivers but eats with us. He is not allowed to walk between his room and the restaurant as there are more lifeforms roaming near his lodgings. We have taught him a new word, ‘Warthog’.

After resting, a local guide took us on a nature walk. We examined the excrement of many native animals. We saw adult and baby hippos swimming in the river, a crocodile catching fish, water buck, and a huge variety of birds.  This planet is inhabited by species that are new to us.  Our guide was well equipped for the trip, carrying a stick, Kalashnikov, and mobile phone.  Bob the Mouse stayed safely in his transport (my bag), he was therefore not at risk of being the expendable member of the crew. The guide communicated with central command by frequent texts and calls, we were confident that if danger occurred we could be safely transported back to the starship Paraa.  

 

In the evening we had a 3 course meal to the accompaniment of a local band and dancers.  This is a truly beautiful place. The people are very friendly and always helpful. It is very clean, and the food is excellent. The chef is incredibly helpful with the peculiar diet of Dr. Tom. Altogether a pretty good new civilisation. Bob the Mouse had a near miss at breakfast when he fell under the table and was left behind. Charles is beginning to accept this alien lifeform, and rescued him at the last moment to bring him back to the safety of our room.

Last night it rained very heavily, and we were unable to make a scheduled trip to observe more of the land and wildlife. This afternoon we took a boat trip in the company of tetchy Swiss twitchers, despite the shortage of dilithium crystals, the expeditionary force then hiked to the top of Murchison Falls.  On arrival at the top of the falls, Charles had successfully navigated the park to find us, and beamed us back to the hotel (though being transported took 1½ hours). As well as spectacular scenery, we saw many interesting native species, including two giraffes.

Tomorrow we travel to Soroti.

We are looking forward to seeing our Soroti friends, but we cannot underestimate the privilege of this time to rest and reflect. 

This is an oasis of plenty in a land of much poverty. Here we contribute to the tourist industry, but we sit relaxing on our paved patio, outside our solid room with a clean, fresh bed with mosquito net, knowing we can eat as much as we want 3 times a day, cooked and served by lodge staff. 

Outside this world, we met people struggling to survive, sleeping on the floor, sloshing in mud, not knowing if there is a next meal, unable to pay for their children’s education.

Our challenge is - what we do next?

How do we live our faith, and care for the vulnerable and marginalised? 

How do we demonstrate our concern for justice and righteousness, and contribute to the relief of suffering?

Hit the Road Jack

We left the hotel at 7.30am – after confusion about the time, we were ready at 7am!

We had an extra passenger, the hotel manager (Jerome) asked us last night if he could ‘hike a lift to Kampala’, as his daughter was in hospital.

Yesterday at this time we were walking back to our room up the steep rutted track from the Global Care office, smiling at children coming out of school, and buying a delicious avocado for about 8p from a local shop. Then we had a cold shower because there was no power again, enjoyed the glorious view of mountains and trees, sipping tea listening to the birds.

I am currently in a hotel in Kampala, listening to totally different noises. There are calls to Friday prayers, people chatting, horns blaring, sounds of stairs being washed, loud music from the bar opposite, and I suppose I should add the hum of the fridge. Yes folks, we are back in town. I think this is the first Ugandan hotel I’ve stayed in that had working hot and cold taps, and all the plug sockets are fixed to the wall. Not a wire in sight. Even more amazing, no wires in the bathroom, and a light over the mirror…

We travelled for over 7 hours today, our longest stop being to change a tyre. We’d just left a small town where we’d stopped for fuel, a ‘short call’, and for Charles and I to finish off my breakfast chapattis, when there was a loud bang under Tom’s seat. It is impressive to watch Charles change a tyre – the jack wasn’t high enough so there was a bit of searching for rocks in the swamp, leaving me guarding the car and luggage. Tom says I’m formidable – ha ha ha – when the local children saw me in my sunhat they all burst out laughing.  Tom was very excited because his rock was better than Jerome’s. The joys of travelling with 3 blokes.

It is fascinating making a long journey like this. You leave mountainous terrain with small, ramshackle, thatched huts spaced out wherever there is flat, cleared ground. After an hour of a bumpy pot-holed road with endless speedbumps, you arrive at the main road. You pass through bustling villages and largish towns, with bodas weaving in and out of the lorries thundering between Kampala and Rwanda. Buses dangerously overtake bicycles, motorbikes, cars and pedestrians, then get stopped by the police at every checkpoint. I sat in the front today and found myself wincing frequently, or trying to breathe in when someone was coming towards us on the same side of the road. We passed vast areas of swamp, a game park with zebra close to the road, sugar plantations, coffee farms, piggeries. In some areas the hillsides dotted with cows remind me of home.

But everywhere there are people walking barefoot at the side of the road, carrying ridiculously heavy packages.  

There are stalls selling a few tomatoes or pineapples. People working in the fields. There are shanty towns and remote villages – no running water, no electricity.

We were ready for this weekend to re-charge our emotional batteries.  But while we are resting in a comfortable, clean hotel with a well stocked restaurant, I keep seeing those three sets of twins . 

I can feel the mud squelching underfoot, see the sad eyes of the ragged toddlers, but maybe next year they’ll manage if their sister takes them with her when she goes to school, and they can join the feeding programme at Kahororo. 

Then I think of the twins at school, and their father who was so grateful and truly believed that because of Global Care his children are alive.  

And the progression ends with the twins at the carpentry shop – gaining new skills and hoping for self-sufficiency. 


I am truly thankful that I came here in 2008 and had my life turned around by this amazing charity.