Facing each other

On a picnic up in the hills

On a picnic up in the hills

We are now into the final phases of our work in Ethiopia. I have reported on the welcomes, the tough decisions, the high points, and the heartbreak. The last couple of weeks have really been dominated by the goodbyes to the patients we have grown so close to over the last couple of months. One doesn’t do this work for the thanks (we do it for the free flights..) but it’s overwhelming to be part of a team that sends these kids and adults back to their communities with a very different outlook from when they arrived. There are tears on both sides as we say goodbye to another of our friends each day. The strongest relationships that have been made are between the patients themselves, many of whom have spent their lives at the extreme end of human suffering. They came to a place where they met others in the same predicament, and have seen each other through the trauma of major reconstructive facial surgery, celebrating in the successes, and helping each other through the inevitable low points during the long post-operative period.

Karima is 16 years old and from Southern Ethiopia. When she came to us the left side of her mouth was almost inverted so that the gums and teeth were apparent through the cheek. She is the youngest of six and had spent her entire life behind the walls of the home. She came with her older sister, Foziya, who is not only very beautiful but very confident as well. The love between them is obvious but whilst Foziya led the show, Karima hid in the shadows behind her. I was in theatre as 4 surgeons, 2 anaesthetists, and 4 theatre nurses laboured together for 9 hours correcting her defect. Two months later and Karima is a very different girl: the swelling has gone down she can smile; she joins in the joking with the other girls; she’s confident enough to get her hair done, and we even find her and her sister putting lipstick on together one day. These seem like small things but this is the first time in her life she can take part in the normality of the everyday rituals we take for granted. I hope the UK-based surgical team that gave up their time can see these photos.

Karima and Foziya, smiling sisters

Karima and Foziya, smiling sisters

With the lions at Born Free

With the lions at Born Free

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Leaza is about 14 years old and from Somalia. It is difficult to pin her age. She again has spent a life behind closed doors and so is more mentally immature than her body suggests. I remember exposing her defect two months ago, the first bad noma defect that I had encountered. I reported on the visceral effect that it had on me at the time. She had a talent for shyness that I had never encountered before. Whilst you knew Karima was around but retiring, Leaza had the ability to disappear in plain sight. Although in your immediate proximity she was able to hold herself in such a way as to evade your salience and avoid notice. You would call out to the other children to go and find her, only to realise she was standing in front of you. Again in two months we’ve seen an incredible transformation. She is now the scamp of the group and again joining in with the other children. She now has the confidence to chase me around the garden whipping me with her muslin.

Staff look on as Leaza is stalked by two lions

Staff look on as Leaza is stalked by two lions

In the last blog I reported on the developments of baby Dewal that came to us. He continues to get stronger each day. 6 weeks ago he didn’t have the strength to stand; now he has realised the joys of walking and running and can’t stop. He’s constantly exploring the world around him and has a smile strapped across his face, again a new novelty. He’s gone from 7.1kg to 8.8kg in a few weeks. Whilst his mother is being cared for in hospital his father has found a new role. A few weeks ago he didn’t have a clue what to do with the child, it doesn’t fall to the man in South Sudan. Today he cradles the happy baby, they sing together, and he is beside himself with laughter as he struggles to change the nappy. In terms of improvement baby Dewal has to be up there with many of our patients.

Father and son

Father and son

The power of toys

The power of toys

Whilst I report on these successes it must be said that working in this environment is not always easy. I think the biggest barrier we have faced has been communication. The operations which have been performed are complex, and whilst we counsel our patients all that we can, it’s not always possible to relay as much information as we would like. Our patients speak a variety of languages and dialects and whilst we try and use translators when we can, they are not always available. Our patients have so many questions that they don’t know how to ask. When events occur that they can’t comprehend they create myths to make sense of them. These myths are cultivated behind a smoke screen of linguistic difference, smoldering away without our knowledge. The results are frustration and sometimes anger. We’ve always managed this but it’s distressing for all parties when the power of speech and communication is taken away. As such we rely on the trust of our patients to let us do what we think is right for them, and to gain that trust we use the techniques that have been used for millennia. Whilst the armoury of words we have is redundant, the body language and tactile messages we can send are as powerful as they are anywhere else in the world. I have found that, whilst so much can be so different between two people from different cultures, the way in which affection is presented remains ubiquitous. I have had the privilege of working with two great mentors in this respect, Julia and Sue, who truly are experts in compassion. Just by talking, laughing, and spending time in the presence of our patients they have been able to gain not only their trust but their love. There is no doubt in my mind that the holistic care we have been able to provide under their guidance has contributed a great deal to the successes that I report.

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Part medical professionals, part children's entertainers

Part medical professionals, part children’s entertainers

In plotting our escapes from the compound we have passed off some trips out as ‘pastoral exercises, critical to the healing of our patients.’ It’s not the first time that trips have been organised so the adults can get away.. The kids have absolutely loved it each time, just to get away from the compound, and away from the mental slavery of healing for just a few hours. Here’s a few photos of the highlights. The cats are from ‘Born Free’ nearby in Menagesha. All the lions and cheetahs are rescue animals who were being smuggled. The primary route is across Ethiopia and into Somalia for the boat trip over to the Arab states. A baby cheetah can be bought in Dubai for $2000. As is the case for smuggling and poaching across Africa, the cause is not the poachers who are desperately poor and looking for a way out of poverty, the fault lies with the rich who are far removed yet continue to demand the animals for monetary compensation.

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The two months seem to have gone by quickly as is always the case when one is so absorbed in a situation where work and life have no boundaries. It’s a pleasure to get so caught up in a real life without the distractions of pop idol and advertisements. There have been times that I have struggled with the concept of Facing Africa, providing very high tech and expensive services for just a few, and offering surgery to people who may not be able to understand the concepts at play. But having seen the transformations that we have it is easy to understand why this surgical team continues to give up their time for free, give up their annual leave, and provide the service which they do. There are of course arguments for spending the same amount of money on simple and wider reaching public health measures, but whilst Facing Africa make all their own money for this particular condition one cannot disagree with their existence. Noma falls into a narrow category of conditions which have certain characteristics. For me it is very similar to the conditions caused by traumatic childbirth, known as fistula, the focus of work at my previous home in Sierra Leone, for the following reasons: it exclusively affects the poor who have no access to medical services; the condition is inherently stigmatising such that sufferers are isolated and suffer profound psychological trauma; it is rare enough that sufferers imagine they are the only ones in the world affected; the treatment is complex and cannot be provided by the health structures that exist with Africa. In light of these characteristics there is a niche for specialist NGOs to fill the gap, and their existence is supported by the suffering that exists and the sensitive way in which they address it. As such I will continue to support the work that Facing Africa do and encourage you to do the same via their website at www.facingafrica.org

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Village elders in Somalia dye their beards orange with henna. Here we improvise with iodine...

Village elders in Somalia dye their beards orange with henna. Here we improvise with iodine…

The jobs I have done abroad have taught me a lot. Sierra Leone was my first lesson in clinical practice in the tropics, and the diploma in East Africa was an introduction in the approach to academia in Africa. Whilst I have developed a few of my clinical skills in Ethiopia, the overwhelming lesson has been one in humanity. The personalities of our patients are caricatures of both strength and suffering in equal measure and spending time with them has been a privilege. There a very few situations where doctors and nurses have the opportunity to spend this much time with their patients, walking with them through chapters of both terror and joy. They have taught us a lot about what really matters in the world, and to love each other despite the very superficial forces that tend to govern us in the world in which we normally live. In so many ways we couldn’t be more different from each other. The ways in which we perceive the world around us could not be more disparate. Whilst some of our upbringings have instilled arrogance, for others it has instilled a sense of persecution; whilst some have been taught to question, others have been taught to obey. But whether you have been fed by the silver spoon in a public school in Dorset, or spent your childhood being branded with the scarifications of the Sudanese Dinka, some things are preserved: the looks and touches which are shared between two people, one nervous to offer care, the other nervous to offer their trust; the humour which arises with the trivial miscommunications surrounding everyday life; and the need for people to spend time in each other’s company.

Actually doing some work

Actually doing some work

Gez, our driver and stalwart of FA, with our Somali friends

Gez, our driver and stalwart of FA, with our Somali friends

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Saying goodbye to some of our patients

We are all trapped in certain ways by the circumstances of our birth and upbringing. We often sympathise with the ‘poverty trap’ of people who are born in rural sub-Saharan Africa. But as we watch their laughter and their games unfold we see that in many ways they enjoy more freedom than us. They are not trapped by smart phones or by advertisements, they are not trapped by the dreams that Simon Cowell has so carefully laid out for them, they are not trapped by an ingrained desire to consume at all costs. Whilst we are all trapped in different ways by our upbringings and the societies in which we live, sometimes we become so trapped that we forget to experience the people around us. But here we had found a place where we were free to experience one another’s humanity, without distraction, just facing each other, somewhere in the highlands of Ethiopia.

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All worth it

My Valentine’s card

Plenty of quality goods on show at the meat market

Plenty of quality goods on show at the meat market

One of many coffee ceremonies

One of many coffee ceremonies

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Out and about in the farmlands terrifying local children

Out and about in the farmlands terrifying local children

Saving a giant tortoise from the ditch

Saving a giant tortoise from the ditch

I know the reason why some of you are here. It’s not for the cheesy medical stuff it’s for the birding news. The wait is over, here’s your avifauna fix…

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Check out this little montane white-eye with a cheeky berry in his beak

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Cancel my ten o’clock it’s the Ethiopian boubou

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The Christina Aguilera of the bird world, the mountain thrush

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‘Cos soaring’s never boring, Duck if you’re a rodent it’s the angur buzzard (male)

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The female tacazee sunbird. Not the brilliant colours of the male but delicate just the same, sipping from this agapanthus.

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Reported previously but here I present a superior shot taken by Julia of the elusive white-cheeked turaco

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A complicated business

The Facing Africa Team

The Facing Africa Team

Finally pulling their weight. Sorry, couldn't help the caption... They pulled their weight all week

Finally pulling their weight. Sorry, couldn’t help the caption… They pulled their weight all week. This was Bill Hamlin’s (right) TENTH mission with Facing Africa in Ethiopia as head anaesthetist.

As soon as they were here they were gone. A big thanks to the surgical team, primarily coming from Great Ormand Street, for all their hard work over the last couple of weeks. Thank you for giving up your annual leave and private surgical lists and working for free. It was a busy week with two theatres performing more than 30 operations. It was a stressful couple of weeks for the patients who were watching each day as more of their friends were taken into the unknown. A little disconcerting when you still have your scheduled op and your friends come back swollen, in pain, and dribbling a mixture of saliva and blood.. Some of the operations performed are at the forefront of surgical technicality. The techniques are far from perfected and complications do arise. The next few days are critical in the long term success of the operations.

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Hiroshi Nishikawa and Anthony MacQuillan on the left – the plastics team. David Dunaway from the maxfax team on the right

It has been amazing to see some of the transformations that have occurred. Ayesha is about 15 and been confined to the house all her life, with a clamped jaw and a non-existent self-esteem. Today she looks another person, and she seems like another person too as she sits with the other children. The graft from her arm is healthy and she is looking at a different future than she had before her a couple of weeks ago.

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Ayesha – second from right – on the mend

Unfortunately this isn’t the case for all. Bekalich is about 25 and from South Sudan. She has three children including an 18 month old baby who is now in our care. There was some discussion as to whether a major reconstructive operation would be appropriate in her case; she was still breastfeeding a dependent infant; she was very slim with a BMI of 14; she had achieved important life goals of marriage and children; and she didn’t cover her face in her home village. In the end she went to theatre to have a forearm graft to replace her facial deformity. The first concern was the baby. The child was malnourished and not behaving normally for an 18 month old baby. He would cry whenever he was taken from the mother, at which point she would scoop him back up into her arms and to the breast, signifying attachment issues. The child would not take any interest in the world around him, and wouldn’t even react to loud noises. In the UK this behaviour would immediately be flagged as secondary to neglectful abuse. He received no stimulation from the mother. She did not play with or talk to the child who just sat silently in her arms. The child did not crawl and made no effort to move, and there was hardly any muscle mass on the legs. The child was socially and developmentally delayed, most likely secondary to the social exclusion that her mother has suffered due to her defect. Most obvious was that the child didn’t smile. His mother’s facial disfigurement was such that she couldn’t smile herself and I suspect this child had not had contact with many other people in his short life. We would look after the baby during his mother’s operation. We saw this as a valuable opportunity to feed up and stimulate the baby.

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Almost two weeks later and we are looking after a different child. This is due to an amazing effort by all the nurses and the patients here who has been stimulating the child around the clock. It has seemed like bullying some of the time but with positive results. As I look down the gardens I see him sitting up on his own. He is playing with a ball and moves onto his front to crawl at his own accord. I run down to get a closer look. I tickle him behind his ears and he squeezes his mouth together into a pout. We all tickle the baby a bit more and to our amazement a huge smile spreads across his face, milk teeth and all. This is the first time the baby has ever smiled, you can imagine the elation. As you would expect we kept tickling him until he cried…

The original version of this blog then went on to outline what has happened since. I must admit that the version I originally posted probably crossed patient confidentiality boundaries. As such it has been moderated. However the dilemma is till the same – what happens when advanced technology meets those that are not understand the basic principles of modern medicine, and how can one possibly obtain informed consent? This is an issue that the surgeons here are constantly debating. It behoves Facing Africa to be self-critical of their own work, a responsibility that I feel they take up with great wisdom.

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Right then onto the fun stuff. First of all it’s your favourite section – BIRDING NEWS. Two weeks ago saw the construction of a new bird table, FAs first foray into the world of conservation. It has to be said that the table was not built exactly to the specifications and design that I had drawn up, but TIA and it works. It took a couple of days for our beaked buddies to work up the courage to visit, but now they can’t get enough of the stale crumbs and dirty water. Here are a few of the highlights.

A Ruppell's robin-chat pays a visit. Acts like a robin but interestingly not actually in the same family as the well known red-breast

A Ruppell’s robin-chat pays a visit. Acts like a robin but interestingly not actually in the same family as the well known red-breast

If you see a flash of iridescent blue then it's probably our metallic friend the blue-backed starling

If you see a flash of iridescent blue then it’s probably our metallic friend the blue-backed starling

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A small siskin sitting in a tree

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Photographed AT LAST – the elusive white-cheeked turaco in a rare moment of stasis. In flight this turaco reveals brilliant crimson patches beneath the wings.

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Not a bird. Sue took us on a lovely walk to investigate these rat-like meerkat type animals. Anyone know what they are?

Last week also saw the first bonfire party for the kids (and mainly the adults). Coca-cola, crisps and chocolate, and very distorted music playing very loud on a speaker that was too small and couldn’t cope. One child was sick within an hour from excitement and was found with chocolate stuffed away in all her pockets and then cried at the end because whe was over tired, a ubiquitous occurence all over the world at this type of event. Here’s a who’s who of the night. Well done Julia and Sue for some inspired packing of animal onesies..

All smiles from the team, blood sugars rising rapidly

All smiles from the team, blood sugars rising rapidly

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Two of the children get this classic party game going. You’re meant to balance, not hold, the pillow on the head.

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Nurse Meron forcing a smile having expected to come onto a nice quiet night shift. Hands up if you’re at least two fantas down!

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Carnage on the dance floor

"There's nothing I like more than a strong gin and tonic and a dance with a young man." Julia Whiting - Feb '14

“There’s nothing I like more than a strong gin and tonic and a dance with a nice young man.” Julia Whiting – Feb ’14

Hanging out with the seniors

Hanging out with the seniors and Midiwe who stuffed her chocolates in the piggy bag

My two friends

My two friends

The surgical team arrives

The surgical team have now been in Addis for a week and the first of our patients are beginning to come back to our Cheshire home, typically with a swollen face and a fragile sense of humour. On Tuesday I was in theatre getting a sense of what our surgeons do. I was with Ayesha, a 15 year old girl who has a large noma defect on the left side of her face, and a jaw clamped shut. The extra bone that was formed between the facial bones was removed and the jaw released. This was overseen by the most brutish of the lot, the ENT surgeon, with a hammer and chisel. It’s a different experience watching this when you’ve had three weeks to get to know the patient.. This discomforting feeling was balanced with a sense of elation around the theatre as the mouth was opened, for the first time since Ayesha was a small child.

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The plastic surgeon then started work on the right forearm. A large flap of skin was dissected, as was the large radial artery, with a few of the muscle tendons that would be used later. The flap was then lifted off of the arm and put over the hole that was left in her face. Meanwhile the maxillo-facial surgeon had been dissecting the neck to expose the carotid artery and jugular vein. The artery and vein from the forearm flap were then threaded from the face and down into the neck. Then the microscope is brought out for the fiddly bit. The radial artery of the flap was sewn onto one of the arteries in the neck to give the new flap a blood supply (the superior thyroid artery in this case) and the vein of the flap was plugged into the vein of the neck so blood from the flap can drain. The needles the surgeons use are almost invisible to the naked eye, the calibre of the vessels being just a millimetre or two. The clamps were released and we all watched to see the flap come alive. A carpentry-like tool is used to raise a skin graft from the thigh to cover the donor site on the forearm. She will inevitably be left with a large scar here. Everyone got sewing again and the 9 hour operation was complete. However the healing is just beginning and the next few days are essential. Not all free flaps like this will survive.

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Dissecting the radial forearm flap

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The flap is mobilised and ready to be grafted to the face

Ayesha was an excellent candidate for surgery. She is young and will benefit a great deal from the functional and cosmetic improvement. However this week we said goodbye to some of our friends. Due to various reasons it was not appropriate for them to undergo a major operation.

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Kadyash is probably about 40 years old. Out of all of our patients she probably has the worst facial disfigurement cosmetically. Her face is dominated by protruding gums and teeth. She doesn’t have a nose and the left eye socket is destroyed. The outer third of her tongue has dried and keratinised and acts as her lower lip when she eats and talks. What is naturally surprising to us all is that she has three children, as does another patient with a large disfigurement about whom I have written before. As I examine the rest of her body I discover her heart is beating hard in her chest, and she complains of some chest pain when she walks too far. Her blood pressure is slightly raised so I order an ECG and she indeed has heart disease secondary to untreated blood pressure. This is an increasingly common cause of death in adults from the age of 40 in sub-Saharan Africa. It’s unclear whether she is fit for a large operation. Back at home she would have more cardiac investigations, but out here we can’t trust the investigations that are done. I sit down with her and have a long conversation, long for two reasons 1) because there’s lots to talk about and 2) because we have to go through two translators. She has come a long way, a three day journey from South Sudan, and has got her hopes up for an operation that will change the course of her life. Instead of telling her she cannot have an operation I give her the information that will let her make the decision by herself (this is a form of manipulation that doctors use on you every day). Although we would have loved to have helped with her appearance there was a risk of orphaning her three children. Once this was made clear it was a no brainer for her. Although she does indeed have a large facial defect that is amenable to surgery, she has lived with it all her life, learnt how to talk and eat, and completed important life goals such as having children. Unfortunately there is no room for cardiac follow up after her discharge. Her heart condition will deteriorate over the next 10 years, but she would have lived to the average life expectancy for rural South Sudan, and produced three children. There are times to interfere in the natural course of people’s lives, and there are times to keep clear. When importing high-tech surgical services such as these, it is essential not to abuse the temptation to do too much. Kadyash is an amazing woman. Although I’ll never get my head round the life she has lived, we’ll never forget her bashful smile.

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Julia and I saying farewell to Kady

Chot is about 30 years old and also from South Sudan. He came along with most of his upper lip destroyed, but good maintenance of jaw function. He was due to have an operation on Tuesday. The surgical team had planned to use part of his bottom lip and move it round to make a top lip. Before arriving at the hospital I had been informed he had refused to sign his consent and I was going to talk to him to find out why. Unfortunately on arrival I was asked by one of the management team to ‘work my magic’ and ‘persuade him to have the operation.’ The other two cases in that specific theatre had been postponed that day and there was apprehension about a potentially empty list. I went to talk to Chot, who was in a state of terror. It seemed that the shift from rural Africa to a private hospital had been a bit much. As we talked I found out the reason for his refusal. He said that although he wanted a new top lip, God had made his bottom lip perfectly, and it was not his right to undo God’s good work. This wasn’t meant flippantly, he meant it absolutely. This man’s religious beliefs had not been taken into consideration. Fortunately he was allowed to make an informed choice. He left the next day for the long journey home, disappointed, but having been allowed to make the choice that was right for him, and importantly, not us.

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Some of our patients help loading up the surgical equipment

Agino is a 24 year old lady from Bahir Dar, 10 hours north of Addis. She has had a large soft tumour growing on her face for the last 5 years. She covers her face at all times in public. She has an unusual case of venous malformation, the tumour made up of veins full of blood. Her relationship with her face is a little different from our other patients. She has grown up with a normal looking face, her fortunes changing having reached adulthood. Adversity and stigmatisation are not things she has grown up with but are new players in her life. Unfortunately our surgeons here are not able to operate on this condition. The risk of bleeding in this environment is too dangerous. The preferred treatment is ‘sclerotherapy’, injecting a caustic agent into the feeding veins to close them up. It’s a pretty specialist procedure carried out usually by interventional radiologists. It appears that there is no service available here in Ethiopia. So what do you do when a lady like this comes under your care? What I have done is probably a little naive. I promised this lady that I would find a way of helping her, before doing the research as to what it may involve. It’s not the first time someone has got carried away in a consultation, but it’s done now. This lady will probably need to travel abroad for private treatment in a specialist centre and she doesn’t have any money. So this is your first warning for a future fundraising campaign. Hopefully by exposing my promise I will be further motivated to make it happen, such is the power of accountability. If you know any interventional radiologists, get in touch! She is happy for me to use her photographs to appeal on her behalf.

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Now I know for a fact that some of you grudgingly wade through the medical stories to eventually get to all the latest birding news. Some of you are open about your passion, some of you remain securely in the closet. However I must tell you that bloggers get a lot of stats about their page and I can tell exactly how long each of you stares at the birding section. I know who you are. Here’s a few shots to get you through the week. Get ready for a bumper edition next week as we review the construction of a new bird table!

With a tail length that Chaucer would be proud of, it's the speckled mousebird!

With a tail length that Chaucer would be proud of, it’s the speckled mousebird!

A Grivet monkey, closely related to the East African Vervet

A Grivet monkey, closely related to the East African Vervet

Menelik's busbuck, this time the female

Menelik’s busbuck, this time the female

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Three common waxbills sitting in an Acacia tree

Out and about in the rural highlands

Out and about in the rural highlands

A human boy

A human boy