Blog 28: Was it all worthwhile part 3

On Sunday it’s Tokiso’s birthday and I arrange a small party for him down in house 5. This is the boy who wanted to walk to school when I first came in 2016. He started a ball rolling that has gathered momentum over the last 2 years, resulting in bringing out a ton of physiotherapy equipment this year and the building of the physiotherapy house.

I have realised that you can’t just start something and walk away, raise hopes and then dash them, however I didn’t ever imagine the subsequent events that have followed from Tokiso’s dream. Yes, getting the equipment out here has been worthwhile. It has given the children the opportunity to do all sorts of activities, on a wide spectrum from walking, to being able to touch something intentionally.

Having some control over what your feet and hands do is massive progress for some of these children. The joy of being able to kick a ball or bang a drum can not be underestimated, We’ve even reached the stage where some of the kids can kick the ball to each other holding onto standing frames or strapped into a chair. Maybe one day Phelisanong will have a disabled football team.

Ultimately you want their progress and the physiotherapy to continue. Regarding that aspect I feel I have done what I can. Malineo has stayed the course from her training last year and continues to grow in statue as a physiotherapy assistant. She has now worked along me for 10 weeks in total and has proved to be an absolute diamond. 

The jury is out on Joalane, she’s had her moments but I’m not sure if she has the passion and commitment to last, time will tell. Other staff have joined in for various sessions, including Mamello, helping physiotherapy to gain a higher profile. Its impossible to avoid us as we are constantly blocking the pathways with the walking frames, taking the children to school or the physiotherapy room.

I have also met a number of the parents and relatives, this year and last, and spoken to them about how to maintain their child’s physiotherapy at home. Malineo leant out some of the physiotherapy equipment to use in the holidays to help the children do their exercises and get the families involved.   

I feel the new physiotherapy house will also help sustain the physiotherapy, giving it a base and focus. On my last day here Mamello asked me to do a presentation to all the staff on the progress of the physiotherapy, the importance of the equipment and the new building. It’s my third time at Phelisanong and every visit has been a building block improving the physiotherapy treatment for the disabled children here.

So, will I be back again? Well I would certainly like to come back to see the physio house set up properly, the children using the facilities and support Malineo. I would like to bring back more equipment as the children are growing all the time and need bigger boots and better seating. There is so much work to be done here but it really needs a team of specialists to give the best treatment. Two incidents illustrate this on my final day.

I am in the physio room with 3 children when Mama Jo comes in with an elderly couple and a young boy. Without any explanation she leaves them with me, obviously in the belief I am clairvoyant. At this point I get a lucky break because the gentleman speaks good English and informs me they are the child’s grand parents and have been told to bring him to physiotherapy. We all look at the boy as he wanders aimlessly about the room unaware of where he is or what he’s doing.

After some questioning I discover the boy is epileptic and was put on Epilim which controlled his fitting. All was well until the doctor said he could no longer have Epilim and would have to have Valex syrup. This does control the fits but has had drastic side effects and reduced him to his current mental state where he relates to nothing or anybody. Epilim is around 500 Maluti a month and the family can’t afford it. The doctor says he can only supply Valex.

The grandparents are between a rock and a hard place and look at me helplessly. I am used to thinking on my feet but have no idea what to say to them as their grandson continues to crash around the room. I decide to phone a friend and fortunately Owen picks in the middle of a training program for mental health somewhere in Lesotho. He advises me there may be other medication options, and the mental health unit at Hlotse hospital might be able to help if the grandparents take him there.

The grandparents gratefully receive the advice. What the boy really needs is an expert in mental health, or paediatrician, not a physiotherapist. At the end of the day the need for specialist care for certain problems is reinforced. The little girl with the festering club foot and Spina bifida is still in desperate need of a swab to identify the bacteria and get the right antibiotic. Not only that but she is doubly incontinent and has terrible diarrhoea. I write clearly in her Bukana that her faeces need to be tested for bacterial infection, possibly E coli (which she has a past history of) as well as a swab taken from the foot.

The lady who takes the children to the hospital clinic arrives back and solemnly hands me the Bukana. I open it to find no swabs or samples have been taken, only the insane suggestion that Nthofela undergoes toilet training. I swear and only just manage to resist my desire to rip the Bukana to pieces and stamp on it. How I wish I could speak to a doctor that knows what they are doing and get the right treatment for this child.

I walk slowly up the track to my hut and share my last Maluti with Mahali. Yes, it was all worthwhile, but it’s only the tip of the iceberg.

https://www.youtube.com/watch?v=s_0qSioRnjg

Copy and paste the above link for Best physiotherapy moments and dance moves of Lesotho 2018              

Blog 27: Building progress and the unfathomables

I am happy to get back to work on Monday and see the children. Back home you might see a patient once a week, or once every few weeks, to monitor their progress. Here I see them every day and am much more closely involved with their daily routines. Phelisanong is very muddy after the recent thunderstorms. The weather has increased the hammering the walking frames are taking as well as the daily use of them to negotiate the rocky ground to school.

After all the cost and effort to get them here I am concerned that they last and decide to clean and grease them. They are built for off road conditions in the UK and I doubt if the engineers had the African terrain, sun and dust in mind when they designed them. In the NHS we have stores that deal with the cleaning and maintenance of equipment and it is often scrapped with the slightest of cosmetic damage. Here there is no NRS sores, its DIY, and I have brought tools and grease with me to help.

I am not very good at this sort of thing but am getting better out of necessity. There is one tap, in the middle of Phelisanong, and we take the frames there to wash them before greasing. In her enthusiasm to help Malineo has taken all the wheels off, which seemed like a good idea at the time, until I realise that all the numbers have worn away showing which wheels go with which frames, and on which side … Oh crap! 

You would think that there is a limit to the mathematical variations of the combinations of wheels and frames, but the possibilities seem endless and it takes an hour to sort it out. I blame the sun beating down on my head for limiting my ability to follow a rational process. I decide to use it as a training opportunity and suggest to the physio assistants they follow a less haphazard approach next time.

If there was disabled access between the houses and the school the frames and wheelchairs would be under less mechanical stress. There has been a new consignment of wheelchairs since I was here last year, but they are already breaking up. Presently the concrete path is a semi- circle, if the circle was completed, with sprigs off to the classroom blogs, then the children who use wheelchairs and walking frames could access the school with ease. It’s a few hundred meters of concrete path and I don’t know if, or when it will ever happen.

Just below the school classrooms a school hall has been completed, built by World Vision. A steep rocky slope leads down to it and I join the infants on the first morning when they get to use the bare concrete rooms, instead of sitting under a tree. I think sitting under a tree is pleasanter, but not so great in the pouring rain. There is a wheelchair ramp at the door, but there no path for the disabled children to get there. Hopefully there is a future plan to rectify this, for now it’s just one of the unfathomable things that that leave me perplexed every day.

Meanwhile the physiotherapy building is going up at an extraordinary rate. I ask Mr Chalabala about it as he gives me a lift into town. Evidently the builders are paid by the square metre, so its up to them to decide how much money they will earn and how quickly.  They are tough men and very strong, they have to be, there’s no machinery, it’s hot and its hard work. Most of them wear balaclavas, despite the heat, and look like ninjas as they go about their tasks.

The head ninja for the physio build lays the concrete blocks, while his mates mix the cement. He seems to be doing it all by eye and he has a good eye, as his lines are straight and true. Now the walls are up I can see more clearly how things will work and I think it will be okay, if the promised path is built to it. There is scope to develop it in the future, and hopefully it will be a great resource for the disabled children here.

Mr Chalabala drives the truck up the rough track from Phelisanong while the ninja’s stand in the back, holding on as best they can. You can tell Mr Chalabala is the boss because he wears plastic hard hat, rather than a balaclava, and shouts a lot down his cell phone. We reach London and he escorts me to the liquor store to get Maluti beer.  A can of it is my one treat every night, but it means running the gauntlet of the dodgy side street leading to the liquor store. I have been hassled here a few times, which is probably a factor of drunk men and being the only white woman in town.

Relieved to escape this time without anyone telling me they love me, I get my beer and jump into a taxi heading home. While I wait for the taxi to fill to capacity, a woman offers me fish cooked in batter from a batch she is carrying in a plastic bucket. I weigh up the risk of E. coli against a break from the staple diet of peanut sandwiches. I decide to risk it, but take the precaution of incinerating it on Mahali’s gas stove when I get back. It proved delicious and thankfully harmless. 

The next day I check up on the girl with the infected club foot. I am concerned because her Bukana does not say she has had a swab taken. This does not necessarily mean it hasn’t been taken, Bukanas are not the font of all knowledge. Since the brief note of made in 2015 of an “operation to left club foot” nobody has written anything about it or seems to have noticed that the wound remains unhealed. The clinic man hasn’t read her Bukana and doesn’t realise that she has spina bifida, or know any of her past medical history.

The house mothers were supposed to be bringing her to have the wound dressed, but he has only seen her once. I bring her to him and he dresses the wound and I ask him if he will go to the hospital clinic with her to check on the swab. He agrees and for a few hours I feel I have a handle on the situation until he approaches me at the end of the day with a sad face.

“Mme Jan, I have bad news” (my heart sinks) “I am leaving” (I look at him in disbelief) “I have just had a call and I am going to a new job. I won’t be coming back after today” (exit clinic man who is never seen again)

And that’s the way it rolls here. It’s another unfathomable and I still don’t know whether Nthofela will ever end up having the right antibiotics to cure her infection. She is the sweetest of children, uncomplaining. as she sits quietly humming to herself while playing with the Duplo blocks.

My fear is that she will end up like one of the teenage girls here whose club foot is shoot to pieces. All the ligaments have ruptured, such that the foot has rolled over, points backwards and she now walks on her ankle joint. She has a Zimmer frame and walks to school over the rocky ground with only a sock protecting her poor foot.

She walked past me in tears last week accompanied by a house mother. I wonder if there is anything I can do to help, maybe provide some protective footwear? The house mother laughs and says the girl is crying because she has tooth ache. How stupid am I to think that walking over rocky ground, with only a sock on, dragging your foot along at 180 degrees the wrong way could possibly be painful?

I pick her foot up and it dangles uselessly. I can turn it the right way around, but that seems to distress her even more. I guess she is used to the way it is. There is nothing I can do, and she goes on her tortuous way. I don’t know why she must endure this horrendous journey to school every day and isn’t taken in a wheelchair. Maybe the reason is because she can walk she has to, or because she has no wheelchair, or because that’s just the way things are. For me it’s just another unfathomable.

Over the last 2 years I have now worked in Lesotho for nearly seven months and often feel I know less about the way things work here then when I started. It is impossible to explain the complexities of what it’s like to anyone, unless they have worked on the ground and seen it up close.

As I stand in the physio room, tying a piece of pipe insulation onto a drum stick, so Lesojane can hold it, I wonder what my colleagues back in Powys would make of it all. I am covered in mud, as is all the room and equipment, a large box of condoms adorns the window sill along with some dirty lunch boxes. I am standing next to a kitchen cabinet, which is actually a filing cabinet for the Bukanas. Each house has a designated shoe box for the children’s Bukanas with the room number written on the lid. While this might not look very professional, it’s a lot more user friendly than the WICCS electronic notes system that I use to find patients back in Wales.

I fix the drum stick and Lesojane beats hell out of the Irish drum I brought along with a box of musical instruments in the container consignment. He has to do it with straight arms as he can’t control bending his elbows. I totally admire him for his grim determination to overcome his flaying limbs and do the things that most children can do without thinking. Flushed with success of hitting the drum he moves onto his next ambition, “I want to kick the ball” he says with a glint in his eye.

The best way to help him achieve this is to strap him into the baby chair, which is too small for him, but grips him tightly and gives him some control over his legs. In physio speak this practice is known as “key points of control”, but I doubt if you will find this particular technique on any Bobath course. Malineo holds his head steady and I try and calculate the best moment to throw the ball, so it will contact his foot. It takes quite a few attempts but finally it connects and the ball sores gloriously into the air. Lesojane laughs ecstatically and its one of the many moments that light each day with a touch of magic. I’ll try and figure out the unfathomables another time.       

Blog 26: Mental health, weddings and public transport

The week starts with our usual physio routine at Phelisanong. We walk the kids who can use the walking frames to school, and then for the rest of the morning we see the younger ones who don’t attend school. Children like Loreto, who loves sitting in the little supportive chair I have brought with me this time. I saw Loreto last year and am amazed that with the help of this chair she has progressed to sitting up, controlling her head and even having some direction over where her arms go. When she manages to spin some of the beads on the toy in front of her and make one bead move along the wire in the direction she wants it to go, both she and I are ecstatic.

After lunch we see the older ones who are back from school. We do more walking, use the standing frames to promote balance and strengthen joints, play with the toys to assist hand coordination skills, use the therapy balls for core stability exercises, do some general stretching, get the legs going using the static bike, maybe use some small weights to strengthen the arms, play catch with a ball to assist hand/eye coordination skills, dance and do anything we can think of to get the children moving and stimulate their minds and body.

Its sounds very dry when I talk about physiotherapy this way, but the reality is having lots of fun to achieve higher levels of function and independence. The children are very entertaining to work with and their determination is inspiring. Mothimokholo and Kolosoa can now take a few steps without using their walking frames, but its high-tension stuff. Mothimokholo is ataxic and needs to hang on to his trouser pockets to stop his arms waving about. He takes wide staggering steps and looks like John Wayne about to draw a six shooter. Kolosoa can’t straighten his legs and walks using a very quick Charlie Chaplin type of gait. I follow them along behind, holding my breath, waiting to grab them when the inevitable comes and they fall. Then I pick them up and when do it all again.       

This routine is broken on Wednesday when Owen, from Powys teaching health board (see blog 23), turns up late morning to do some assessments on the children with mental health issues. Phelisanong is the only children’s centre in Lesotho that accepts children with physical disabilities and learning difficulties  and suggested it might be helpful for Owen to see some of them and see if he could offer some advice.

I did say that he could only see children who had a Bukana, to give him a fighting chance of gleaning some background knowledge. This is the booklet children are supposed to have in which medical histories are written in. The problem is that half the children don’t have them and for those that do the information is of variable quality and use. Anyway, it’s something to go on and if you are lucky it might have their medication in.

There is such a variety of problems and so little information to go on its all very confusing. I make a fast exit and leave Owen to the confusion. There are many tragic cases here and it’s so difficult to know where to begin and what a country can offer with so little resources.

Owen bravely carries on with the assessments after lunch. Meanwhile, Ashleigh, who I met last year, has rocked up with her guitar and it’s too good an opportunity to miss. I fetch my sax and impromptu outdoor concert takes place outside the clinic window where Owen is trying to work. By the time about 80 kids are singing and dancing and generally having a good time, I think Owen concludes, “If you can’t beat them, join them”. He finishes trying to assess a boy who runs around making bizarre noises, which sound like a happy lap top on illegal substances and comes outside to join us.

Given the circumstances I think Owen has done very well. Trying to gather information from a Bukana and from carers who don’t know the child well is not easy. Even if you do manage to assess and diagnose a child what then? The reality is that in many situations that there is no support network for parents, no training and carers who are living in poverty, working all day long and cannot give the kind of input these children need.

Owen sees a girl who epitomises this problem and asks me to give my opinion on her.  She was hit by a car and then attacked by dogs, and now she can barely walk and is clearly disturbed. After the accident she couldn’t stop talking and she has been put on a high dose of sedatives to keep her quiet.

Her treatment is far from ideal but presently there are few alternatives available to her. She has not had any investigations or seen anyone able to prescribe more appropriate medication. One doctor has put in her Bukana the banal comment of “Doing well”, I think not. Understanding and treating mental health in Lesotho has a long way to go.

Leaving behind this depressing thought, I head to Maseru on Thursday. We all know there’s a very special wedding this year (which has nothing to do with Prince Harry), and I am lucky enough to get invited to it. First though, I must undergo the ordeal of public transport.

I drag my bags up on to the road and manage to flag down a four plus one taxi and get to London. From there I need to get a mini bus taxi to Hlotse. My heart sinks, I am the first on board and I must wait until it is fully loaded. It’s a precision job and fat ladies must get out so thin men, children and parcels can be wedged into the corners and maximise carriage.

Eventually we leave, and there is constant rearrangement of bodies on route as we drop off and pick up more passengers. The cause is not helped by the sliding door which can only be opened by special technique and falls off every time it is opened. Once it is lifted back onto the runners we can continue the journey. We make it to Hlotse and happily I can join Owen who is getting a lift with Manyanye and make the rest of the journey in more comfortable fashion.

Yes, Justice and Thato are getting married and I am about to find out what a themed bohemian, exotic African wedding exactly is. I first met Justice when I came out to Lesotho in 2016 and he was such a great help to me when I was working at Saint Angela’s. I know Thato from a hiking trip last year and I am almost as thrilled as Justice’s mother, that they are getting married.  

On Friday we head out to the lodge where they are holding the event. It’s a beautiful venue and I’m up early watching the frantic preparations of tents going up, chairs being put out and hundreds of flowers being cut. The guests start arriving, dressed in their finest, the ladies in their beautiful exotic African prints. The ceremony takes place under two trees, it’s mostly in Sesotho and I don’t know what’s going on, but it doesn’t really matter as when a point of significance is reached their plenty of ululating, so I get the gist.

The bride and groom look radiant. Once the priest has said his piece and the knot is tied, there is more ululating and they are congratulated by everyone. The rest of the day takes the usual format of weddings, speeches, food, music and dancing. I have said I would play “The wedding” from the African suit by Abdullah Ibrahim, on my sax. When I was introduced to this tune last summer I felt I was destined to play it at Justice’s wedding, the only problem being I haven’t yet met the key board player or rehearsed it with him. 

We meet on stage and there is a hurried agreement on the arrangement and we agree to wing it. The singer kicks of proceedings with a series of love power ballads and has the mad idea that I join in with them, having not played any of them before. I wing it, fortunately the singer likes to hang on to notes for ages and fill in the rest of the spaces with lots of doo bee doo’s. I fill in the gaps when he comes up for air. Classic numbers by Celine Dion and Lionel Richie never sounded so good and playing “the wedding” after “Endless love” was a cinch.

We take a break for food and speeches and the day winds up with the evening venue at the bride’s house. I get a ride there with three UN workers and we spend the journey discussing such diverse topics as genocide and gender awareness in agriculture. It appears the UN has a department for everything, but when it comes to the big issues of genocide has proved to be totally ineffectual. The workers feel it might be a massive unwieldy bureaucracy, but at least it lays down the principles of cooperation … I suppose its always possible to put a positive spin on these things.

I get a taxi back to the guesthouse and we get snarled up an accident at a crossroads. Its chaos and its every man for himself. There are people shouting in the road and cars pointing in all directions as drivers try to get around the blockage. A mini bus daringly rides up a bank at 45 degrees while we join a group of vehicles going off piste down a muddy path strewn with potholes. Driving in Lesotho is always an adventure. 

We make it and I arrive back at the guest house and I can’t find the keys get in. I wait it out on a settee until Justice gets back. Despite not having slept for 24 hours he is positively glowing, and you would never know the stress he’s been under for the past few months with work, Saint Angela’s and trying to organise the wedding. Its been a beautiful day, with the usual moments of African chaos, topped with the happiness of two people I hold dear… and that’s what happens at a themed bohemian, exotic African wedding, should you ever be lucky enough to be invited to one.  

The following day friends, relatives and a sheep have been invited around to Justices garden for the final celebrations. The sheep quickly finds out it is on the menu and is slaughtered, butchered and its carcass hanging from a tree before it can protest. I was hoping to join the party but unfortunately my lift back to Leribe has fallen through and I must endure public transport again.

I get down to Maseru bus station to find a 100-seater bus with 4 people sitting in it and know its going to be a long day. An hour and a half later I think we’re finally off, but the bus driver decides if everyone standing in the aisle moves up more people can be fitted in. Two hours after I got on the bus we set off.   

Its baking hot, but everyone when is cheerful, even those standing in the aisle for hours. I try to adjust my mind set and chill, after four hours it’s getting hard. We have stopped at least a hundred times and taken a long diversion to the border post at Maputsoe, where we come to a complete standstill in a massive traffic jam. It’s now been six hours since I’ve been able to empty my bladder, its dusk and I’m facing taxi changes in the dark.

Happily, my luck changes when I get to Leribe, where I thought the bus terminated. It turns out the bus goes all the way to Phelisanong and I won’t have to make any changes. The heat from the day has gone and there are only a few people left on the bus. The sun is setting giving the mountains a red glow as we drive towards them. It’s very peaceful and the atmosphere puts a different spin on the day as I look at the beauty around me. 

I stumble down the track and get back into my hut. The piece of carpet is wet by the door, so I guess it’s been raining. A quick dash to the long drop toilet relieves my bladder from its 8 hours endurance test. I remove the beer cooling in my multipurpose washing up bowl and so that I can then use it to have a standing wash. Then I’m ready for food, … peanut butter sandwiches again, and a Maluti beer to celebrate. It’s good to be home, and sometimes you have to suffer a little to appreciate the small comforts around you. Only and week and a half to go so every moment is precious.