Blog 25: The next challenge

It’s been a roller coaster week. I’ve laughed, cried and torn my hair out, sometimes all at once. Manyanye and Mr Chabalala have struck a deal and the building work has started, however since then the physio hut has taken on a life force of its own and has changed position, shape, size and interior. A couple of times I thought I knew what was happening but now I realised I don’t and I have felt powerless to get what I believed was best for the children. Mamello assures me it will be fine and maybe it will be if the path is completed. Having to negotiate a boulder strewn path was not part of the vision I had in mind for the children to gain access to physiotherapy.

I feel that I have been naïve and not been forceful enough. I thought getting the equipment here was the hard part and the notion of room 10 m x 12 m with a sink and lights was a relatively simple concept. The builders wielding pickaxes, with looks that threaten GBH when I say that 6m x 8 m is not big enough, clearly think otherwise. It’s not their fault they are stuck it the middle of it all trying to carve out the foundations through solid granite with a hammer and chisel. 
     
Away from the building work and despite the present small space I’m trying to operate in, we’ve managed to make things work. The strategy is to chuck all the equipment we don’t need outside and make some space for the children inside. Working with up to ten children at a time is only possible because I am blessed with two physiotherapy assistants. These lovely ladies are both working very well, although the language barriers occasionally lead to misunderstandings and confusion for the three of us. This is especially because Malineo and Joalane like to please and say “Yes” to everything, although they might mean “No” 

We work around it and we must be on some kind of wave length as many of the children are making great strides, literally, and are surpassing my expectations of them. They are discovering standing balance, sitting balance and reaching and touching things that have remained out of the grasp of their flailing limbs up to now. Ten days is a short time but not when you’ve got kids who are so enthusiastic about everything.

I am very pleased with the equipment. The children have all grown since last year and all needed bigger boots and walking frames to continue their progress. When you are trying to work out the best sizes to bring it’s a miracle that things have worked out so well. Several children have to share the same pieces of equipment, so it is often a compromise. I have not used some of the equipment before either, so it’s a bit of a test for me as I turn knobs, get stuck to bits of Velcro and try work out where straps go.   

I find adjusting the standing frames particularly taxing, but they are proving of great benefit in helping the children that have no balance grow stronger. The static bike has been a boon to a couple of the bigger boys frustrated by their legs, but who now find they can pedal a bike independently. Their faces light up as their legs wizz around. Some serious gaffer tape adjustments are needed to the broken pedals, but we seem to have got it sorted.        

The type of children that that Phelisanong take have now changed and the bigger children that use to lie all day on their back are now longer accepted. Younger more mobile children with a chance of making some progress now fill their places. One of these is the child with the festering club foot. I asked Mamello to take her to clinic to take a swab to identify the bacteria which has prevented this wound from healing for the past two years. When she returns I note they have tested for TB and debrided the wound, which looks heaps better.

On a roll Mamello brings me a 5-year-old boy with bilateral club feet. He has been put in plaster casts sometime back but is still so pigeon toed he can barely walk with out stumbling over his own feet. I have never treated club feet before and in these situations I ask myself two questions:

Could I make the problem worse?

Could I make things better?

If the answers are “No” and “Yes” respectively then I will have a go. I have found over my last three visits to Lesotho that common-sense and reasonable medical knowledge can go a long way. Tokelo looks at me with deep suspicion a I get some scissors out and he starts to sob. I think, he thinks I’m going to operate on him.

My taping skills leave something to be desired. As a physio there are a hundred different taping courses you can go on and I have always resisted; Blue Peter skills were never my calling. Anyway, I end up with a pair of feet which look much straighter and find him a very nice pair of orthopaedic boots to hold them in position.

The following day I check him and stretch his feet keeping the tape on. He is still not convinced that I’m going to do something terrible to him, but I win him over by playing “This little piggy went to market” with his toes. I guess he didn’t understand a word, but it certainly made him laugh and there is obviously something universal in the “Wee wee all the the way home that appeals to all children. The third day I see him he just falls asleep while the rest of the little ones in house 4 clamber all over me desperate for attention. 

There are visitor’s mid-week, Hijinx special theatre company on Wednesday and Sentebale people on Thursday. I go through the motions but to be honest I’m rather distracted by the ever-changing dimensions of the physio house. It’s so frustrating and bewildering if it wasn’t for the improvement in the kids and feeling I was letting them down I would have left by now. Manyanye has come with the Hijinx people and says I must come to an agreement with the builder and Mamello. I thought I had, but I have found it was all a mirage and would like Manyanye to step in like a knight in shining armour with a pickaxe.

The Sentebale people look impressed by the equipment. “Do you know says the lady “these are the only walking frames of their kind in Lesotho?” I didn’t, but I’m not surprised. She is referring to the five posterior walkers which I have brought here, with a little help from my friends. They are top of the range, cost hundreds of £’s and are great for the kids. I am baffled why Sentebale, as a rich Lesotho charity for vulnerable children, did not feel they could help me get the equipment here when I asked them.

Friday brings more site meetings. I am down amongst the footings convinced the building has shrunk again. The men wielding the pick axes look at me suspiciously. Before I have time to put my tape measure away Mr Chalabala appears back from his sojourn in south Africa.

“Mme Jan how are you?”

“I am not good. The buildings too small, there’s no water, or electricity, we can’t even get to it (I point to the rocky track) and if you make a path it will direct water through the door” (I point to the slope) and there’s no space for a playground” 

He gets out his tape measure, “No, look its 10 metres long.”

“We said 12”

“There’s not enough money” 

“Well make an equipment store to make more room inside”

“There’s not enough money”  

“Well put a lintel in the wall so one day when we have the money we can build an adjoining equipment store”

“Okay” and he shouts to a man with a pick axe to make it so.

Mamello turns up and agrees that Phelisanong will pay for the concrete to make a path. Mr Chalabala agrees that he will make it so that a river doesn’t run through the door. I tell him I will kill him if it does (such are my limited negotiation skills)

Mr Chalabala gives me a lift up the road in his truck to buy some bread. Half way up the track he gives a lift to a man. I don’t know who he is, but he has been standing outside the office this morning watching me running up and down the path with the kids. He shouts excitedly from the back of the truck at Mr Chalabala

Mr Chalabala: He says you are blessed by God working with those children

Me: I want to be blessed by a good builder

Mr Chalabala: He says he will pray for you

Me: Kealeboha (Thank you) I need all the help I can get

Mr Chalabala: I am going to my Uncle’s funeral tomorrow

Me: Oh sorry

Mr Chalabala: I will call you after and we will go for Maluti beers at Mountain Top View

Me: Oh (thinking how many beers does he think it’s going to take to get me to agree to further shrinkage of the physio house)

Anyway, hopefully Mr Chalabala will forget by the time he’s done the funeral thing. I say goodbye and get out of the car and buy my bread then go back to Phelisanong. We have a great afternoon session with a dozen kids, sticky lollipops and some very interesting music as the kids form a backing band to my sax.

As I leave I notice that the crater in the path, that I complained voraciously about to Mr Chalabala after one of the kids fell into it with her walking frame, is being filled with cement. He said it would be done by the end of the day and he has kept his promise. It’s a small miracle and maybe Mr Chalabala will come through or maybe it will come down to the prayer power of the man in the back of the truck.  

As look at Mothimkhulu wobbling towards me in fierce concentration, holding onto his trouser pockets to stop his arms waving about and the joy on Kamohela’s face as he walks with a frame, after serious treatment to try and shrink the tumour in his brain, I have no choice but to keep trying to get the best deal I can for the kids.             

Blog 24: One journey ends

Blog 24: One journey ends

We all look at the temperature gauge, and it doesn’t matter whether you read it in Sotho or English the colour is definitely red. The driver, Paul, shakes his head and we have to stop. He’s made it through two road blocks, bribed a fat policeman, sweet talked another one, but the engine is proving a more to be a more obdurate problem. We’ve got as far as Pitseng, 5 km before the ultimate destination of a year’s journey in raising money for physiotherapy equipment and getting it sent out to Africa. 

We all get out and Pauls mate lifts the passenger seat, allowing Paul to reach out a telescopic arm and undo the water cap. The 3 of us leap back in respectful admiration of the volcanic eruption of boiling water that fills the lorry’ s cab with steam. Eventually it stops, and Paul goes to a nearby house to get water to refill the tank. It’s not looking good and I decide to phone a friend.

I normally contact the manager, Mamello, at Phelisanong via Facebook, but she’s not picking up. I need her local number and the most likely person I can think of to get the number is Garry in Canada. So, I call Garry in Canada, from a roadside in Lesotho, who gives me the number which Mamello answers. This is a fine example of modern communication and the brilliance of telecoms over here. Back in Wales I can’t even get signal to call somebody living in the same village as I do.

Very quickly Teko, the Phelisanong driver, arrives with the truck and we unload half the equipment into it and take it on to Phelisanong. By the time we return for the second load Paul has managed to nurture the vehicle to the top of the track at Phelisanong and we offload the last of the equipment.

The track down to Phelisanong has turned into a deeply rutted river bed and is bad as I’ve ever seen it. We lurch down the track with a static bike and standing frame wobbling precariously on top of a medical couch. Finally, we reach the little hut I’ve been using for physiotherapy for the last 2 years at Phelisanong and bundle the equipment inside. 

The room has been thoughtfully prepared and cleaned but by the time all the equipment is in it there’s no room for anything, certainly not physiotherapy. There’s barely any light left, and I decide I must investigate my accommodation, Garry’s hut on the hill above Phelisanong. Malineo, the physiotherapy assistant I trained last year, is there to welcome me with a broom and a big smile.  It’s great to see her and she disappears in the dark and I start to investigate the fundamental needs of man … power!

There’s a wire coming out of the wall, suspiciously attached to a cable lying on the grass outside. I can actually put 3 plugs in at once, which I'm not sure is wise, but I risk it. A rusty toaster provides my cooking facilities, while my phone is on charge and out of the gloom Mahali appears with a lamp. I go for broke and have toast, light and working phone, who needs more? Tea of course! Mahali has a gas stove, boils some water and I’m sorted.    

A spectacular thunderstorm erupts resulting in little sleep and the loss of my precious electricity supply. It also reveals that the roof leaks, but fortunately not over the bed. The morning brings low hanging mist over the mountains and thick mud wherever you walk.

I squelch my way down to the centre and start to unpack the kit with the help of Malineo and a new physiotherapy assistant, Joalane, and Mamello. There is cardboard and chaos everywhere, added to by dozens of tables and chairs outside the door. We brought them with us yesterday and at the time I had no idea why. Action Ireland provided me with a vehicle and trailer to get the equipment to Phelisanong and the truck was also stacked with tables and chairs which I thought were just along for the ride.

Now it turns out they were thrown in as an additional gift because it was thought they might be useful. How right they were! The children eat off tiny plastic tables here, which they can’t get their legs under. Now with the aid of a welding torch the tables are stuck together and voila!   

The pandemonium of the day continues as I try and sort the equipment in the tiny space and get the children fitted with their new boots, which give them ankle support. The shoes are leather and specially made costing around £60 a pair. I’ve got about 30 pairs with me, all second hand, but you wouldn’t know as they’ve barely been worn.

The children tear up and down the path in them using the new frames, some trying to run on their twisted legs in their excitement. They want to ride the static bike, play with the all the toys and stand in the standing frame, all at once. I’m losing control of the situation as I try and a tools to punch a hole in a shoe buckle, whilst tripping over the equipment and bumping into the men welding the tables.

I hear a familiar voice behind me, “Mme Jan, we must talk.” It’s the builder, Mr Chabalala, with a smile that is impossible to be cross with, despite his outrageous quotes and the ridiculous space I am now trying to work in, having failed to negotiate a reasonable price for the building of the physiotherapy house.

“Look,” I say pointing to the boxes stack to the ceiling, “I have been working all year to buy this equipment and get it here. I need a physiotherapy house to put it in and a good price. Cheap, cheap because you are already onsite building a community hall and making lots of money.”

“Yes, yes show me what you want”

We begin negotiations all over again, interrupted by a gang of Welsh teachers and students from Cardiff who start singing in Welsh in the middle of it all.

“Are you Jan the physio? asks one of the teachers very excited.

“Err Yes”

“It’s so good to see how the money is being spent on the ground. Look!”

She thrusts a leaflet into my hands produced by Dolen about the all the work they are involved with in Lesotho. This includes my physiotherapy work at Saint Angela’s and Phelisanong and the proposed physiotherapy building for here. I read it rather bemused while she runs off to find a teacher who has run a marathon for Dolen. He is equally thrilled to find out what the money he has raised is supporting and thinks that he will be able to keep going next time he does the marathon and hits the wall.

I suppose raising money for charity can often be a disconnected thing and I’m glad that they are not disappointed with what they see. I return to the mud, sweat and dribble and the reality of a builder with a tape measure and a note book, pleading with me to let me know what quote he should make that will be accepted. I tell him I don’t know, and he must speak to Manyanye, Dolen’s man on the ground, who is coming tomorrow.

Manyanye duly turns up the following day with a special theatre group from Wales, Hijinks, who are on tour performing in Lesotho. I meet with Manyanye and Mr Chabalala, and bash out a simple plan of dimensions and materials that can be quoted for. I leave them to it and go down to house 8 to start checking out some of the new children. So far, I have only seen the ones I’ve been working with the last two years

There is nothing objective in my method, I just go into the house and stand there looking at the children rolling around on the floor. I notice a little boy staring at me blankly and question the house mothers. I find out his name is Tebo, he’s 5 years old and only came to Phelisanong yesterday with a young single mother. She has told the staff he doesn’t walk or talk. I can’t see anything particularly wrong with him apart from the fact that he looks like he has a learning disability.

I pick him up and his legs jack knife. I bounce him a bit and encourage him to stand, which he can with support. I take him back to the physio house, find him some boots, get Malineo to hold one hand and he stands between us and we walk out the door. Tebo doesn’t appear to have worn shoes before and his legs are doing strange high steps at the peculiar feeling its giving him.

We walk down to where the Hijinx’s people are dancing with the children. It is difficult to describe what happens next, but some sort of light bulb comes on in Tebo’s head, and he starts bouncing up and down with a big smile on his face trying to join in. I see the little boy that lies within the apparent blank exterior, that’s never had a chance to shine. I think his problem is that no one has nurtured him, talked to him or encouraged him to develop at all.

I find a little girl, Tula, who seems to have had a similar start in life and feel that both her and Tebo will learn to walk and talk with encouragement. They just need practice, stimulation and a little love. It sounds simple, but you have to have the time, the will and the education to do these things. That’s not a given when there is little help available to young mothers who have their own problems and difficult circumstances to cope with.

Other problems I see are not developmental, they are a result of complex medical problems which need expert surgery. Mamello brings me a boy with a brain tumour and girl with Spinae Bifida with a club foot that some surgeon has butchered, leaving an open hole that I can see right into the foot. I think its been like that for a couple of years. I remove the filthy bandage and I am very tempted to try and debride the wound. For the moment I make do with getting an oversized pair of shoes and padding them out with socks which enables her to walk.

The pace of work continues unabated in the afternoon and the children from house 5 are sitting outside the door calling to me each time I pass asking to come to physiotherapy. I keep saying “Yes, soon, I’ll be back,” but so far, I can’t find any time to keep my promise. They take matters into their own hands. I am walking with Bokang and when I look back they are all crawling up the concrete path following me.

Lesojane head is wobbling around furiously as his knuckles dig into ground and he drags his body along. He shows a remarkable turn of pace as he goes for broke determined to get to physio. He makes it all the way to the physio house as do the rest of the hard core crew from room 5. It’s a beautiful day and we all end up sitting on the small patch of grass outside playing with the toys and listening to some music.

It’s a moment to savour. Finally, the huge stress of getting the equipment here rolls off me and I can relax knowing this part of the journey is over. Tomorrow’s another day and the next stage of the journey to get it installed in a decent physiotherapy house begins. Just for now, though, I can take a little bit of pleasure and watch the children playing.      

Blog 23: Potso ?

African’s sometimes name their children in the circumstances they were born. The small boy sitting in front of me in a wheelchair has been named Potso by his mother, which is a question mark, or Why?  He has brittle bone disease and his deformed legs are completely folded underneath him, such that you wouldn’t know he had any legs. He is 12 years old and probably only weighs a few of stone.

I am assured he can look after himself, wash, dress, and go to the bathroom without any help. I watch amazed as very slowly he manages to climb out of his wheelchair and onto the floor. He leans forward onto his elbows; his bent legs flip up behind him as he puts his weight onto his knees, then he slides forward using his arms. Why a small boy should be faced with such an ordeal I don’t know, but how he overcomes the tough circumstances life has dealt him is a miracle indeed.

I am working at Saint Angela’s for at least a week while I wait for Action Irelands container to arrive with the equipment for Phelisanong.  As usual there have been some rather curved shaped balls to deal with and the management has gone a bit pear shaped here. It’s a question of learning from mistakes and rebuilding again from scratch. While this is very demoralising for everyone, on the bright side I don’t think there are any more mistakes left to made.  By happy coincidence Action Ireland are on hand to provide some corporate governance advice and surely the only way is up!  

There are 11 new children here at Saint Angela’s and I have assessing them this week and running a daily voluntary after-school physiotherapy club, for which there is no shortage of takers. I have been laid low with some mysterious illness since arriving and I have been very grateful for an extra pair of hands provided by Owen Hughes, who normally runs the pain management service for Powys teaching Health Board, the same health board I work for at home.

He is here on the ILO program, that I came with in 2016, and is doing some work assessing mental health resources in Lesotho. He probably did not expect this to involve being a physiotherapy assistant but has proved more than capable of adapting to the situation. He passes his first test and repairs a wheelchair with a roll of gaffer tape without blinking.

We both watch as “Star” bounces up and down on grossly bowed legs which look like a pair of bananas. Owen asks me if she complains of pain, but she doesn’t.  I can’t remember any of the dozens of children I have treated here over the last 2 years ever complaining about pain. The Powys pain service would be redundant here and Owen would be out of a job. I guess this says something about how different the societies of Wales and Lesotho are, and the very different heath expectations people have.

I try to provide a few practical solutions to some of the daily problems the children have here. Star gets tired walking any distance on her bow legs and I find her a pair of crutches to use for school. Blankets and pillows provide some padding for the children whose wheelchairs don’t fit. Potso’s wheelchair is miles too big for him and has no cushion. A thick blanket makes it much more comfortable. I stuff three pillows around a girl with a terrible scoliosis to try and fill in the gaps and support her spine. The children spend all day in their wheelchairs and go to school in them, so it’s important they are as comfortable as possible.

There is one girl who is eating off the floor like a dog, as she is unable to control a bowl of food on her lap. She is wheelchair dependent and I think has a type of cerebral palsy called athetosis. This means she has uncontrolled movements which she tries to overcome by holding onto a steady point of control. The tables at Saint Angela’s are too high for her to use and there are no chairs, hence she has ended up eating her meals on the floor.            

After trying several different solutions, a raid on the preschool produces a small table and chair and a way forward. She can sit at the table and lean across it, holding on with one hand, while she feeds with the other hand.  Action Ireland help me out with some of the many other problems that need sorting, and I can’t thank them enough for the many favour they have done for me since I met first them. God bless the Irish for their kindness, generosity and good humour.

They fix the broken tiles on the physio floor, adjust wheelchair footplates and go in search of a charger for an electric hoist which is desperately needed for a quadriplegic boy. He is very heavy and can only move his hands. Currently the men are having to dead lift his weight from the floor and its only a matter of time before someone gets badly injured. A working hoist will be much better for everyone.

It’s the end of the first week. The girls sit on the gym floor colouring pictures, like little girls love to do all over the world. Kats and Kamo are playing floor football, Kamo using his deadly spin kick to score goals. John shows us that his cerebral palsy does not inhibit his unique dancing talent. One of the girls with a hemiplegia manages to walk with a rather strange looking tripod stick I have found in a cupboard. A couple of the others do some walking with the aid of the parallel bars and guidance from Owen

Potso pushes a small truck in front of him across the floor and speaks to the little people he loads in and out the back. He patiently builds up a wall using small colourful bricks and looks up and gives me a shy smile. So many “Whys” I can’t answer this week, but the kids always come shining through with their smiles, accepting what “is” and dealing with what’s in front of them, one day at a time.