KALRO Kindness

The Kenya Agricultural & Livestock Research Organisation KALRO was a haven for the Big Green Truck in Nairobi. Sampson had made the contact when he brought the house down presenting at a science education conference at the Unizulu Science Centre in KZN. KALRO do groundbreaking work – there was a hive of people busy in labs and greenhouses all over the National Agricultural Research Laboratories campus – but it was lovely and quiet, with clean green air; the perfect spot for Zola and I to hang out while Sampson travelled to the UK for his brother’s wedding.

I was feeling the return to altitude – Nairobi is 1795m above sea level, 500m less than Addis but still high enough to have me labouring to breathe. I woke that first morning with my heart racing, feeling rattled by the after effects of the hectic journey and shivering as it was 20˚C and raining.

Like Cape Town, July and August are Nairobi’s coldest months. I felt cheated of the milder climate of the plains we’d hurtled across in between the capitals and wished we could go straight to the coast. Combined with still feeling knocked out by our second lot of typhoid meds in 2 months, I was scared that I might struggle to cope 2-3 weeks alone here.

On the bright side, the people at KALRO were just lovely. Director of the Children’s Science Centre, Kenneth Monjero Igadwa, had just driven from Kenya across Tanzania and Burundi to Uganda and back on a 6000km 2 week round trip agricultural mission and was exhausted (and going down with malaria) so we were greeted by his vivacious assistant Janet Kariuki, gorgeous in her sparkly scarf. Purity Muli (pictured below between Daniel Ndungu and Caleb Mwangi) doing her Masters in natural pesticides, was also assigned to keep an eye on us.

Before stressed Sampson flew out the following day, I made him a rice omelette to keep him going on the coach to Plymouth and tried to cut his hair into something a bit more respectable. It ended up rather New Romantic, reminiscent of Martin Fry circa 1982. “That’s the look, that’s the look” (I don’t remember seeing this ABC video at the time but blimey how much is going on here??)

It was SO calm after he’d gone. Zola and I enjoyed chicken soup and The Crown, reassuringly sedate and dull and delightful. I was hoping that being still for a while and ceasing the typhoid meds would alleviate the hot flushes I was now having all night and all through the day.

Each morning, Zola and I would walk around the campus, in a loop around gorgeous green fields of crop experiments, before knuckling down to school, determined to finish the term before Ruby arrived. We were also entertained by the monkeys scampering all around.

I adapted to single parenthood by cooking a huge supper pot once every three days e.g. a giant butternut, carrot, lentil and ginger soup – with Zola’s chopping help. We were getting into a nice rhythm, rewarding days of hard work with his keyboard playing or an episode of The Crown with us two cosy on the bed and the cat on my tummy. PJ was being uncharacteristically needy, coming to sit on my head early every morning before snuggling down inside my sleeping bag for an extra doze. She was also puking so often we were beginning to wonder if she was pregnant.

The peace was bombed when Ruby called me sobbing, completely overwhelmed by the Grade 11 workload at Wynberg Girls, which had her studying till midnight every evening while an old primary school friend of hers was homeschooling only 4 hours per day. I said if she wanted to drop out and complete her Matric that way I would be behind her 100%. I meant it, but also suspected that, without opposition, she would choose to push through. She’d come too far to drop out now. But the guilt and worry from not being nearer to comfort her was eating at me.

At 3am I woke with an appalling headache from severe brain inflammation (like when we were in Martigues in France). I couldn’t work out why; there had to be some midnight dumping of chemical fumes I couldn’t smell going on. I was worried how Zola would cope if I were to have some sort of episode as a result. However he was proving pretty adept at managing most things in the absence of his Dad, changing the gas bottle for us and filling up the water tanks.

Kenyans are far less likely than Nigerians to barge in without an invite, but slowly but surely, visitors began to arrive at the truck. We welcomed KALRO receptionist Sophia Munene (top right below), with her niece, engineer Abigail Njoki from Mombasa, who works in construction. Abigail had already built a mall, and was now working on apartments. She advised us to head to the north coast for parties, and the south for quiet.

The next day a whole host of students piled in. I ended up getting completely carried away by their enthusiasm and talked way too much but who could resist sunny Hilda in her bright pink jacket (in group pic below), as well as purple girls Nancy Kalee and Stacey Obatsa (below left)?

I was so honoured when Langat Kibet Emmanuel (above right, between Sophie Pauline and Mary Ndeto) told me I’d changed his mind: he was not now going to go to US after all but stay and invest his brain in the future of Africa where it would be more appreciated. The exchanges with these super bright sparks resulted in the Africa(‘s not had its) Day blog.

Blessings on these BSc students Paul Samuel, Gabriel Munyui, Eric Mukonza, Vanice Nyaboke, David Munthi, Hilda Kitwa plus our friend Janet

Janet kindly offered to take me to the supermarket. Sampson had been doing the shopping since my sharp decline in Egypt so I was glad of her company. I thought we were popping across the highway but she said it was “cheaper down the road” – a matatu taxi ride away. Naivas was indeed cheap, and the first place I’d seen ricecakes on sale since SA, but it was also huge, packed and sensorily overwhelming. By the time I got to the till, every cell in my body was screaming at me.

Janet caught a different taxi home so I was alone in the matatu on the way back. As I tried to get out, one of my big heavy grocery bags swang across my lap and tipped me off balance. In slow motion, I missed the step and fell straight out of the taxi onto the curb. My elbow and knees were badly grazed and bruised, and a litre pot of yoghurt smashed, but I was lucky it was not a lot worse.

After that, Zola and I walked to the supermarket at the ABC mall. It was more expensive but less energy-consuming.

As the frequency of my hot flushes increased from every 2 hours to hourly, I decided this menopause was definitely not peri- anymore. Even though it was so peaceful here, I was struggling to sleep, waking up gasping every couple of hours. It had to be the altitude putting my body under pressure. My period did not arrive.

On Sunday 27th May, while Sampson was having a whale of a time at Paul and Fran’s wedding, Zola and I were invited to visit Dr Ken, now recovered from his bout of malaria. He said he was “sending someone to pick you up” so I was naively expecting a car and was surprised when Caleb and Neil Omwera arrived to escort us on the matatu. During the subsequent 500m walk to his house, I was getting a bit desperate. Thank God I hadn’t walked this morning as I was using up spoons at a terrifying rate.

Dr Ken is a very humble guy, considering his immense achievements. Born in a rural village in western Kenya, his academic capacity and diligent commitment to study has led him all over the world, from South Africa and Australia to the US, Canada and Japan. His main research focus is in the application of biotechnology for food security. But his passion for communicating a love of science to youngsters drew him to found the Science Centre Kenya, as well as his latest pandemic project the Fun and Education Global Network fostering peer learning and Agri-COVID food gardens. Read more about Dr Fun’s wonderful lifestory here.

The dynamic Dr Fun!

We sat in his modest house with his lovely wife Triza and sweetheart daughters Grace, Love and Peace (whom I am delighted to discover have since welcomed a baby brother David) and I felt so honoured to be received into their home. Triza’s gracious and steady aura reminded me of Zola, and she pressed a plate of delicious banana/potato mash with beef sauce on him (while I munched my gluten-free padkos).

An hour later, her three darling little Red Riding Hoods escorted us back to the matatu stop, and dear Caleb walked us all the way home. On the taxi, Gregory Isaacs’ Night Nurse was booming over the system as a blue neon light flashed – very disco bus vibes. I felt elated to have survived the outing but was absolutely shattered and ravenous. When we got in, I improvised ‘pan jam tarts’ – fried biscuits with peanut butter and honey.

On Monday morning, Zola took 4 hours to do Maths. I was lying down trying to load a blog when I heard him sniggering. I stood up and caught him red-handed, headphones on, watching Misfits on Sampson’s laptop which had been charging on the table! Ruby advised me to let it be – her exams had started, and she reckoned we shouldn’t sweat the small stuff.

I did my washing all by myself for the first time in 6 months. Me squatting by the tap, scrubbing away while listening to the BBC World Service, caused a sensation in passers by. Kenyans are unfailingly polite but there were murmurs, greetings and enquiries. Best of all was an unexpected conversation with Ken’s colleague, Mr Alex Kuria, on the Art of Handwashing, as we both appreciated the expert strategic planning shown by generations of African women to get it all dry.

There was no TV for sneaky teen that night, but next morning, on our walk to buy bread from the campus shop, Zola and I talked about building trust and breaking it and how easy it was to conform to most women’s poor estimation of men’s trustworthiness. After that redrawing of boundaries, boyo was on his best behaviour all day.

Purity surprised us, arriving unannounced with 60 primary school kids from the Emerald School. I gave them a 5 minute chat about the trip outside while Zola quickly tidied up and then welcomed them in for the truck tour, 8 at a time. They were very clever and cute but I crashed afterwards, and had to lie down the rest of the day. For the second time this week, I was forced to acknowledge I need to tell people about how ME affects me because another spontaneous visit could be catastrophic for my careful pacing schedule.

Meanwhile Zola was ploughing through his revision notes and doing his washing. I shaved his hair for him. While cooking a big green veg mix for our supper, we had a lovely chat about how great a partner he is going to be because he listens and asks questions and smiles. I ended up detailing my attraction to his Dad, the history of our relationship, how we came to adopt and how scrumptious Zola was as a baby. It was such a special hour together. What a blessing he has been in my life, today and always.

I’d bought lamb chops for his Friday Night Treats. This first red meat in recent memory felt so weird in my mouth I haven’t eaten them since. We watched Get Out which was brilliant on every level.

That night, in Whatsapp texts to my husband, I admitted I was dreading his return, worried that his unthinking chaos would destroy the steady peace and calm our son and I had established. I hadn’t cried once since he left.

I wanted to focus on writing and getting well enough to welcome Ruby so I wasn’t overly keen to fritter energy meeting a guy with a waste vegetable oil recycling business whom Sampson had been chatting with online – but what a treasure Bryan Piti from Zijani turned out to be! Our three hour chat was exhausting but he was so inspired and inspiring.

Bryan’s story was fascinating: a chance remark made by a lecturer in the middle of a boring Friday afternoon presentation “you can make biodiesel from cooking oil” changed his life. Aged 22, while still at university, he started the Biogen Diesel Kenya research project as a side hustle. Two years later he left to go commercial and started his company Zijani.

After being retrenched from an IT company, he sank all his savings into equipment needed to recycle WVO into biodiesel. Business was building slowly when he got a call at church to say his building was on fire. A second blow followed when his childhood best friend William died in a car accident; he had vowed to start a matatu business run on biofuel called BioBUs.

His elder brother then decided to invest 1.4 million Kenyan shillings (R175 000) in the business, with which Bryan was able to buy cut-price equipment from a enterprise that had failed. The money left provided for his employees’ pay, plus Ks20 for his matatu fare, but he had to walk the rest of the way.

His luck changed when he entered the Total Startupper competition and was chosen in the top 10 entrepreneurs of 3000 applicants. He also obtained free premises from a Catholic Father for a year – he pays his rent in liquid soap, as glycerin is one of the byproducts of the recycling process with which he adds value to his hotel clients. He also won a contract to service all 47 restaurants of the Java House chain and transform their waste cooking oil into fuel. So now he drives to work!

Bryan’s energy was like a whirlwind. His hilarious and heartwarming tales were topped by the revelation his mother was a tyrannical chemistry and maths teacher, who used to set her 4 kids exam papers in the school holidays! He knew his periodic table before he went to high school. No wonder he was so hardworking and committed to success! See him being interviewed on KTN News.

Bryan Piti and his Zijani team David Waigwa and Peter Njenga

On Tuesday 5th June, the day Sampson set off to London for his return flight, I got up at 5am in his place to support Bryan at a Total Startupper breakfast meeting with fellow entrepreneurs and business mentors at the Nairobi Intercontinental Hotel. Getting up and out at that time on a chilly morning nearly killed me, let alone stringing sentences together as part of his presentation, but he fully deserved our vote of confidence.

I returned in the late morning thoroughly depleted and took a sudden dive just before eating the lunch I’d prepared yesterday. Zola asked me something about the foodbox and I realised I couldn’t recall what that word meant. I suspect what happens to the brains of people with ME when they run way too low on energy is akin to Alzheimer’s.

Sampson brought vile British weather back with him: it was raining and cold for his show at KALRO on Wed 6th June. In a violently stripey shirt and flash red and white trainers purloined from his best mate, Sampson delivered the Africa Clockwise multi-media show to a mixed crowd of staff and students. With top academics as Mr Dominic in the audience, he got great questions about everything from plastics to worm farms.

In addition, Deputy Director Willis shared some shocking info about the urgent need to recycle used cooking oil and take it out of the food chain in Kenya, because second hand use of WVO by street vendors was causing a huge increase in stomach cancer. Apparently this was about to go into law because smuggling WVO had become rife; a massive load from Ethiopia had recently been stopped at the border.

KALRO Eco-Warriors loved the Eco-Wasters sign!

Back at the truck, we spent a couple of fun hours unpacking goodies from Sampson’s extra suitcase: 5 bottles of conditioner for me, 20 bars of chocolate for himself, loads of books and 3 pairs of shoes for Zola (not a moment too soon if you check the state of his current footwear). Zola was thrilled by sneaker donations from Joss and Paul; smart second hand were like new for him at this point.

To top off the treats, Sophia from reception delivered a parcel of fresh chapattis and a maize/beans/mash mix which was a perfect addition to our veg. They were all so kind at KALRO. Sampson would love to come back to Kenya post-pandemic and do the schools tour with Ken and his team that we didn’t succeed in getting sponsorship for in 2018.

I won’t dwell here on how sad I was not to be able to attend such a joyful family occasion as Paul and Fran’s wedding; it’s part of a grief about missing out on closeness with brothers, soul sisters, cousins, uncles and aunts that I long ago bound up tight in my heart. But I hope the happy couple won’t mind me sharing some glorious pics of their special day in May and understand that if I was struggling to travel to the next suburb in a matatu, that attempting a longhaul journey was way beyond me at that point. May they continue to be blessed with such sunshine and laughter!

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A Pause for Sophia (Sick Consciousness part 1)

To mark Severe ME Awareness Day 2021, 30 years after I first fell victim to post-viral ‘fatigue’, and 3 years since I first vowed to do it, I finally got strong enough to get a Pause tattoo.

In my August 2018 blog ME Too, or Why I Am No Longer NOT Talking To Doctors About Chronic Illness, I wrote about being inspired by the semi-colon tattoo of mental illness survivors, who use it to remind themselves that they could have chosen to end their life but didn’t; the pause sign (II) on the other hand reminds me of the millions missing whose lives are permanently on hold due to Invisibilised Illness. It signifies my solidarity with them, my Sick pride, and why I have to hold on.

A Pause in solidarity with those whose lives are on hold due to energy-limiting chronic illness

My double-fingered salute (II) is not only to show solidarity with all Invisibilised Illnesses but also to recognise the burden of Intersectional Illness: the awareness of layers of oppression suffered by those labouring under a multitude of diagnoses, marginalised identities or both.

Please note I no longer choose to use the term Invisible Illness: illnesses are only invisible if medical authorities choose not to see the blatant suffering of the Sick. Chronic illnesses are not invisible to sufferers and their carers; our pain and energy impairment are no more invisible to the compassionate naked eye than those of people suffering from cancer or diabetes. Alongside the 9000+ scientific papers attesting to the organic nature of our neuroinflammatory-autoimmune-endocrine disease, the overt commonalities and comorbidity patterns of the millions of us housebound and bedbound by them cannot continue to be ignored.

Energy limiting chronic illnesses (ELCI) are invisibilised by those with vested interests in refusing to acknowledge them. Even at this moment, doctors and medical practitioners in thrall to governments and medical insurers are colluding to gaslight us out of our rights to financial support. When the national broadcaster is being used as a propaganda machine, you know it’s time to mobilise.

It is time to stop waiting for doctors to restore our dignity; we have to demand it.

My Pause (II) signifies my pledge that:
I refuse to be kept invisible.
I refuse to be defined by a corrupt medical establishment that casts doubt on my reality.
I am no longer going to apologise for my basic needs as a chronically ill person.
I am no longer going to waste my energy defending myself to deniers.
I am proud of how I have learned to survive thanks to my peers and those who went before us.
I choose to devote my scarce capacities to strengthening the Sick community.
I choose to be proactive not reactive.
I choose to set the agenda: “Nothing About Us Without Us
I will stand up for those too severe to tolerate standing up.
I insist on our human rights to dignity and respect.

* * *

Severe ME Day commemorates Sophia Mirza, the first person confirmed to have ME as cause of death on her coroner’s certificate following a medical inquest. She was born on 8th August, 1973 and developed ME following multiple viral infections in her mid-twenties. However, her death was caused not as a direct result of the severe inflammation of her spinal cord which made her life a ‘living hell’, but because she was sectioned without her mother’s consent by police and health officials who broke her door down. After brutal treatment in a locked ward of a mental hospital, her health deteriorated dramatically and her body became unable to tolerate food or water. Sophia died in 2005 alone in a darkened room, unable to bear light, sound or the presence of another person. She was 32.

Sophia Mirza

This August 2021, I am proposing to redefine the word Sick. Historically, many oppressed groups seek to reclaim words hurled at them as slurs. Note this excerpt from a lecture entitled ME: what do we know (real illness or all in the mind)? given at the University of Strathclyde in October 1999 by Wessely School psychiatrist Professor Michael Sharpe:

“Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the ‘reality’ of their condition (and who) are in this sense undeserving of treatment…Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service.”

People with Myalgic Encephalomyelitis are sick and tired of our chronic sickness being portrayed as malingering, or our complex neurological-leading-to-cellular-metabolic-dysfunction disease being reduced to mere ‘fatigue’.

In this new era of epidemic Long COVID, it is time for us Longhaulers to start upholding the value of our hard-won insights into our condition. Those of us whose lockdown is permanent have a lot to teach the world about patience, about finding meaning in severely social-distanced lives, about surviving indefinite isolation.

Labels such as ‘undeserving sick’ or ‘illness fakers’ are beneath our contempt, and all Longhaulers – ME/CFS, Long Covid and other ELCI – must unite and rise above them.

Let us make #SICK stand for the Society for the Inclusion of Chronic Knowledge.

As a South African immigrant, and a student of Biko‘s work, I take great inspiration from the Black Consciousness philosophy that the oppressed have to free their minds before they can free their bodies. While there can be no parallel with hundreds of years of slavery, colonial occupation and apartheid, Biko’s beliefs about the necessity of building foundations of self-esteem to overcome institutionalised oppression hold true.

In the face of systematically targeted hate speech, which villifies us while simultaneously undermining our disease’s credibility and research funding capacity, we first have to affirm each other.

To honour the Severe, the Mild and Moderate have to stop hiding our struggle, and start celebrating our persistence in a world that insists our suffering doesn’t exist.

There is no shame in being Sick.

Sick Consciousness is the necessary precursor to Sick Pride, which is the progenitor of Sick Power.

As Biko’s definition of Black included all people of colour, so our definition of Sick must include the full spectrum of the neurodiverse to the chronically unwell who don’t match capitalist, patriarchal definitions of ‘fit for work’. We must stand together, defiantly insistent on our intrinsic worth and the accommodations that could easily be made for our access.

In the last 50 years, as society has progressed, the heteronormative majority have had to make way for gay, non-binary and trans realities. Now we must demand another shift in the consciousness of the privileged: beyond their status as Abled compared to the Disabled, they must be compelled to realise how very Well they are compared to the Sick.

We the Sick are less prisoners of chronic fatigue and chronic pain, and more prisoners of the Well’s chronic lack of imagination. They just cannot conceive of feeling this lousy for this long.

I understand the Well’s reluctance to acknowledge our reality, because it means becoming aware of unplumbed depths of vulnerability in themselves. I myself, a 70% bedbound person with multiple sensitivities, shy away from envisioning the gruelling daily existence of those with Very Severe ME, tube-fed and occasionally paralysed, because of my well-founded fear of descending to that state. But if we the Sick don’t start ruthlessly telling it like it is, who will? If so-called ‘Chronic Fatigue Syndrome’ was more precisely named ‘Living Death Syndrome‘, perhaps the risk of getting it might finally be taken seriously.

If you think that is an exaggeration, read the words of the mothers of the dearly departed Merryn Crofts, Emily Collingridge and Lynn Gilderdale. See the courage to continue shown by Anil van der Zee, Naomi Whittingham, Jamison Hill, Jessica Taylor-Bearman, Nevra Liz Ahmet, Ketra Wooding, Elizabeth Milo, Jehan ‘Gigi’ Joseph-Garrison, Whitney Dafoe.

Ask the irrepressible Jenny Rowbory, better known on Twitter as Stroopwaffle, bedbound since the age of 18 in 2004. She was last able to write – with incredible positivity and lack of self pity – in April 2020 before a decline following damaging spinal surgery has left her unable to type at all. Her pre-surgery life was already purgatory – if you click on nothing else, please read her blog from October 2019 where she describes surviving on 2 hours sleep a night because that was the longest time she could rest her head on a pillow without dying from lack of blood flow to her brain. Order an audiobook of her poems and support her fundraiser to get her to the US for corrective surgery here.

This August 8th, let us Pause to salute our Sophia, our Stroopwaffle and the millions of severely Sick who continue to endure.

#SICK
#SickAndProud
#LonghaulersUnite

Also by Sam Pearce:
ME Too, or Why I Am No Longer NOT Talking To Doctors About Chronic Illness August 2018
DIY Water Traction Therapy or How I Hauled My Way Back from Severe ME August 2019
#LonghaulersUnite July 2020
#LonghaulersUnite 2: Chronic COVID Time Bomb Ticking July 2021
Press Pause Feb 2015

Posted in 00 M.E. | Tagged , , , , , , , , , , , , , , , | 1 Comment

Some Equators Are More Equal Than Others

The morning before we crossed into Kenya, when Sampson announced he needed a day off to rest, I was hugely relieved there would be no border duty that day.

The previous evening, we’d stopped in deserted bush 75km before the frontier, the most peaceful spot in Ethiopia so far. A couple of guys had walked past, but there were no crowds of baiting youths. Zola and I took PJ for walk to make sure she’d crash out and not be scampering around in the small hours. We passed a silent night in velvety darkness.

The day before Sampson had driven 250km. At 5pm he’d taken the exhaust brake off with Zola’s help and discovered it was stuck on halfway! Something had melted on to it. They cleaned it and replaced the DIY gasket with the new joint Papi had belatedly sourced for us in France. Sampson got very cold and although I heated up dahl and served it with thick crumpet-like roti breads immediately they got inside, he was feeling completely shattered by bedtime and unwell by morning.

Thank God I’d finally managed to book his flight to UK for his brother’s wedding, (at double the cost it would have been if he’d booked it the first time he looked). The internet connection kept dropping so it had taken hours. Only with the help of my best friend, bless her, did we clear the final hurdle, booking his coach to Plymouth. It was such a relief to be sorted.

It felt like Big Reg had finally rolled into the Rift Valley proper: the countryside was lusher, greener and the earth much more red. The people were darker, wearing bolder prints; the women with centre partings and plaits either side. Although it was markedly flatter here on the plains, we were still at 1500m.

After Maths, Zola’s English lesson discussion led to research on the tango (who could have predicted that would be the topic he’d choose to explore?!) and poring over the atlas looking at Argentina for a fascinating hour exhausted me. I was happy to hand over to Dad for Natural Science after lunch.

I commenced chopping of the final few nasty carrots and half a cabbage, all of which I’d been planning to chuck but now we had to make last an extra day before making it to the market before the border. The carrots were bendy and so vrot, I had to peel them all and disguise them in a tomato and veg soup supperpot. I wasn’t up to editing, so lay on the bed doing the traditional reading-of-the-country-to-come in the Lonely Planet Africa. By bedtime I was aware all was not right.

At 3am I awoke knowing my immune system was under siege and fighting. The scariest thing was that I knew my heart was under pressure. I couldn’t explain it, but it was feeling weirdly frail and fluttery, perhaps arrhythmic. My hot flushes had gone next level in terms of frequency and intensity. When I got up for a wee, I felt very shaky.

By morning, the pain in my arms was ridiculous. How could fall-out from chopping a few veg and holding a heavy book yesterday be this bad? My rotator cuffs were behaving as if I’d been stretched on a rack. My arms felt like Elastagirl’s. My usual PEM was definitely being magnified by something else. It took everything I had to pull myself together and get out to do T’ai Chi.

This morning was the first time I mistook Zola for some bloke in the distance – he was looking so ‘manly’ I hadn’t realised it was him coming back from his walk!

Well just look at him! Wouldn’t you?

I felt much better in the afternoon, as we drove south towards the border – perhaps because of another drop in altitude. At 600m it was so much warmer; the mossies and jungle bugs were back.

Frontier town Moyale has a hectic reputation for aggro: in 2012, 20000 refugees had crossed into Kenya following clashes in the area. And in March 2018, just 2 months previously, another 10000 refugees fled Ethiopian army shootings of 13 civilians in Oromia, 80% of them women and children according to the UNHCR. A security guard on the Kenyan side later told Sampson that 5 people had died the previous week, shot inside the border post itself.

But, thank goodness, this 24th border crossing was possibly the easiest ever. A sign on the vast brand new building was promising ‘One Stop Border Control’ although they weren’t quite there yet. The Ethiopian official who dealt with our carnet explained that soon there would be Kenyan colleagues in the duplicate office next door, so truck drivers could stamp out and stamp in at the same place! For now, the huge taped glass hangars were mostly empty. (While writing this up, I discovered Moyale finally started fully operating like this last month, reducing processing times by 30%!)

On the other side, the good news: a 1 month visa for Sampson was free, 3 months for me was $50 and 3 months free for kids! The bad news was that Kenya charges $100 for a ‘Foreign Vehicle Permit’, so swings and roundabouts. Mr Alex in the customs office, explained in super fluent English (such a surprise after months struggling in Amharic and Arabic) that Sampson would have to go into town to get insurance. But as it was now after 5pm, Mr Alex said it was cool for us to stay in their massive empty carpark with an armed guard overnight.

We ended up stuck there for three.

In the morning, when Sampson returned to say he’d found the insurance office but their computer was down, he saw a thick sludge of motor oil under the truck. It had only been changed in Cairo, so he suspected turbo trouble. Why do we always break down immediately after booking plane tickets with a deadline to get to the airport hanging over us?

Meanwhile I was feeling so weedy, I couldn’t even sit up for Maths. I had a hellish headache and low fever. The hot flushes were continuing crazy extreme – my temperature regulation had gone haywire. I was hoping this was due to a period or menopause and not typhoid or bilharzia from the lake. A sudden excoriating kidney pain was so fierce I got scared. ‘Please God, not antibiotics again, not when he’s about to leave and I have to single parent’.

I didn’t waste energy washing or doing T’ai Chi, just got ready to leave for a clinic. But, like me, the truck’s pressure was non-existent and its temperature kept rocketing, so Sampson took a motorbike taxi to find a mechanic.

We were lucky: Moses was the only truck expert in town and Sampson found him just as he was about to leave on a bus to take parts somewhere. Moses and his assistant Ibrahim cleaned, replaced and flushed the oil filter and air-cleaned the sieve filter – it took a needle to push through the last bits. It looked exactly like what happened in Ebolowa, Cameroon in 2013 but that was breakdown 8 and this was no. 19!

I refused to go to the clinic on the back of a motorbike – it was too exhausting a prospect and there were too many variables – but I started taking 9 strain probiotics. The 3 pills I had today really helped me stop deteriorating so rapidly. I entertained Moses’ 4 year old boy Nurdeen (whose mom is Somali) with drawing and snap but had to lie down all afternoon. Sampson was shivering with fever next to me on the bed. I felt OK if I lay completely still, but he had to keep dragging himself up to interact with the mechanics.

His final motorbike taxi ride to get cash to pay them finished him off – an involuntary fart ended up ruining his trousers, poor thing. He just managed to wash before he collapsed. The fact he was wincing at the light and complaining about the cold breeze as he got out of the shower seemed painfully ironic: that sensory vulnerability was my daily reality he’d been denying this whole year.

The good news was that Ruby had managed to get 62% for an Afrikaans oral! Despite missing 3 years of the subject and being denied exemption, she might pass Matric after all.

Zola was a star and cooked us carrot, spinach and red bean stew. For the first time ever, PJ didn’t come in at teatime demanding to be fed. After a long hunt, we found her playing hooky with a strapping white and ginger tom behind the gates of the UNHCR food storage area. He was very handsome with a debonair aura and she was entranced and didn’t want to come home. We called him Bob.

Overnight, poor Sampson was on the toilet every hour. I started the day determined to ‘Be The Change…’ and got him a cold flannel for his feverish forehead. He didn’t ask me how I was. I wasn’t sure I could grow old with such a lack of compassion.

Despite dropping oil pressure, Big Reg made it into town. Unable to sit up, my first views of Kenya were glimpses out the window obtained by holding up the camera and snapping randomly from my bed. Moses met us outside the Afya Nursing Home and set to work again while we went inside for typhoid tests.

Sampson was so convinced he had giardia as well, he took a tupperware full of his diarrhoea along (although I told him it wasn’t – sadly I know that smell too well from the illness that triggered my ME in 1992). He was so stressed about it, he rushed off ahead. I longed to have someone take my arm and help me down the uneven street in the midday heat into the clinic.

The blood tests showed I had a higher dose of typhoid than he did. I was more ill with half the fallout because I have had to learn how to pace myself, living with varying degrees of such symptoms daily for decades. Thank goodness Zola was clear.

When I explained to the doctor how badly I’d reacted to the typhoid medication we’d taken just 2 months ago in Sudan, he prescribed Cefixime for me: a 5 day course instead of 14, the same drug the kids had taken back in Cote d’Ivoire.

Meanwhile, Moses had somehow sorted the compressor, cleaned it of carbon, so we could set off. Alleluya!

Many thanks to Moses Karanja Ngugi (far right) and Ibrahim Adi Bonaya (with thumbs up) plus motorbike taxi driver Mohamed Edin next to wobbly Sampson. Little Nurdeen at the front.

An hour later, we came to rest in a calm green new world.

As always, the first 24 hours on the meds felt like a miracle – my headache was gone and I felt bolstered enough to walk 100m down to the river bank. An old man with legs as spindly as his stick came past, herding a few cattle. I struggled to communicate with him but gave him a couple of tins. Local superhero Guyo Kanu Jillo came down to check we were OK and told me the old feller was deaf. Kanu himself was a Ward Manager looking after Ethiopian refugees in the camp nearby.

He told me the reason Ethiopia is much harder for travellers is because “they were never British”. “In Kenya,” he opined, “we follow British ways, democracy and the rule of law”. He didn’t seem to be just saying this because he thought mzungus like me would approve, but genuinely believed in the sacred nature of the latter.

I found it deeply disconcerting that his education had taught him that Kenya was superior to Ethiopia because it had been colonised. I might have expected that 50 years ago, but post-independence? The old guy probably remembered the young Princess Elizabeth’s visit to a nearby Mount Kenya lodge in 1952 when her father King George VI died, as dramatised in the episode of The Crown we’d watched this week. I wish I could have asked him what he thought about that.

There were so many refugee huts scattered next to the highway. (In December 2018 hundreds more Ethiopians were to flee across the border to escape ethnic violence.)

We had a big hike ahead of us: it was 750km to the capital and 2 days until Sampson had to be at the airport. Lying down in the back after my second typhoid pill, I was aware that I was fine as long as I didn’t do anything. Incapable of editing, I entertained myself watching Prince Harry and Meghan Markle’s wedding blow up on Twitter (notably via Caitlin Moran, Black Girl Nerds and Tom Eaton) in stereo with my Mom’s commentary on Whatsapp! In the end, I had to stop that too because my arms hurt from holding up the phone.

From the cab, Sampson saw herds of donkeys, camels, warthog, ostrich and a giant salamander twice the size of a cat! When we stopped to buy loads of lovely fruit, it felt both surreal and comforting to see how unbothered the quiet town of Marsabit was, 3 days into Ramadan, by the royal shenanigans convulsing the other side of the globe.

That evening, Zola concocted his delicious coriander/ginger/tomato paste, while I made mash and fine green beans to serve with tinned hummus – yum!

Day 3 of meds, I just managed T’ai Chi then climbed back onto bed for the rest of the day. We still had 450km to cover, double our usual maximum. It was difficult for Sampson driving such a busy road while ill. I wish we could have taken it easy instead of bombing towards Nairobi. I knew Andrew and Dee had spent a couple of weeks in this area because it was so beautiful, and I was grieving what we were missing. I tried taking more photos out of the window, hoping to capture insights. But they were just a blur.

Sampson saw many young people wearing nothing but skins and beads as we drove through the rural area, but didn’t think to mention it to me until we were climbing again and people were wearing anoraks against the cold. Suddenly I needed a blanket.

I managed one hour sitting up in the passenger seat around Mount Kenya – it was too misty to appreciate fully – but then I was too ill to talk to Ruby when she called us. So thankfully Zola was sat in the front with a seatbelt on when Sampson hit a series of speed bumps bouncing Big Reg so hard, I screamed and all the toiletries jumped out of the shower rack.

Hurtling along the highway, Sampson caught sight of the sign marking the Equator. With all the lorries thundering past, it was 200m behind us by the time he managed to pull over. In the state I was in, it was too far for me to walk and he refused to waste time doing a U-turn to take me back to take pics.

I took this photo using my zoom out of the back window

Fair enough, the traffic was horrible on this narrow road – I insisted Zola put on a high vis vest to walk back up there with his Dad. But it was tough to sit there alone, reflecting on past photo shoots at key milestones around the continent, and not be part of this one.

Remember us reaching the Tropic of Capricorn in Namibia July 2013?
And crossing the Equator on the west coast in Gabon Nov 2013
when the kids were 12 and 9
and my husband still took time to kiss me?
Straddling the Tropic of Cancer, in windy Western Sahara June 2016, kids aged 14 and 11, just before their birthdays

Now we’d made it three quarters of the way Africa Clockwise, approaching 40000km, but I couldn’t manage 200m to take a photo?

Zola and Dad together on the east side Equator, Kenya May 2018
This darling boy was coming up 14
and this feller was old enough to know better

It took one last exhausting push after supper to make it to Nairobi in the dark, and the highway had Big Reg soaring over one last speed bump: the slam dunk landing broke all the clips on the solar panels and almost broke my back.

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#LonghaulersUnite 2: Chronic COVID Time Bomb Ticking

COVID-19 is not simply a binary threat of life or death: the third outcome is a spectrum of post-viral symptoms seriously affecting even young survivors’ abilities to work, study and parent.

A year ago, I wrote about how the growing clamour around Long COVID might grant an opportunity for severely disabling energy-limiting chronic illnesses to be taken seriously for the first time in 50 years. Instead we are watching the medical gaslighting we have been suffering for decades going to the next level, as governments prepare to rebrand the sidestepping of their responsibilities once again and force us to shield forever.

As the arrogant science-ignoring antics of Bolsanaro, Trump, Modi, Johnson et al will condemn millions more to unnecessary painful disability, on behalf of future Long COVID victims as well as people with ME everywhere, I am begging ME and Long COVID associations globally to convene an online conference as a matter of urgency to commit to the following:

  1. The absolute imperative of speaking truth to power loud and clearly, worldwide: one consistent message with one unified voice.
  2. As most personnel are energy-compromised, the urgent drawing up of division of labour. Each major association to take on one vital role, commensurate with their funding/capacity, to provide the following priorities:
  3. A PR team with an emphasis on positive messaging but with capacity to robustly respond to the slew of misinformation and glaring omissions concerning Long COVID and ME. A proactive media campaign focusing on facts, a diverse international spokesteam and esteemed allies to amplify.
  4. A science team to provide solid sound-bites from decades of peer-reviewed evidence, research updates and a roster of scientists available for interviews.
  5. A clinicians team to issue non-harmful treatment guidelines that can be swiftly disseminated directly via social media as well as to clinics worldwide.
  6. A lobbying team with strategies to approach the WHO, governments and medical authorities to press for urgent policy change and increased research funding.
  7. A patient-led definition of our illness which exposes the full spectrum of its severity, still largely sidelined even within our own community.
  8. Solidarity with sister syndromes and acknowledgement of the need for an umbrella approach to all energy-limiting chronic illnesses.
  9. A manifesto of our demands, from tele-health portals to informed physicians and hospital quiet/dark rooms; inclusive education, expanded employment accommodations and sofas in supermarkets; full disability recognition and social benefits plus support for our carers.
  10. A global committee to speak for us with representative organisations and activists from as many countries (or at least continents) as possible – not just the US, UK, Europe, Scandinavia, Australia and Canada but also from nations across Africa, the Middle East, Asia and South America. And in the spirit of ‘nothing about us, without us’, a way for longhaul sufferers to register for online voting on our needs and priorities, which will lend legitimacy to this global union, and provide stats on our ages, locations and levels of severity.

Even the most conservative estimate puts 10% of COVID survivors dealing with crippling post-viral debilitation; Dr Anthony Fauci has stated that between 25-35% are experiencing lingering effects. With between 20-70 million people already dragged into the quicksand of our existence over the last 15 months, the time has come to put polite requests for acknowledgement aside. We must insist that the numbers of Long COVID sufferers are tallied in official statistics alongside cases and deaths.

Big Lies continue to hold sway when the vulnerable continue to engage in time and energy-wasting vested-industry-generated fake debate (‘cigarettes are not harmful,’ ‘climate change doesn’t exist’, ‘post-viral illness is all in your head’). We must move decisively ahead of the propaganda and mobilise a clarion call for action and accountability, because more than anyone, we know that Silence = Living Death. The chronic illness community owe it to the future permanently bedridden to come together, pool resources and get organised.

We can’t set the pace, but we can set the agenda.

Sam Pearce
30 years’ longhaul, now 70% bedbound post-Africa Clockwise

P.S.

I am too unwell to keep up to date with ME organisations/advocates and Long COVID groups globally, so pwME please help by sharing and supplementing the following nominations in the comments:

PR team: ME Action US with David Tuller, ME Action UK with Valerie Eliot Smith.

Spokesteam: Jen Brea Severe: Merryn Crofts’ mother Clare Norton, Whitney Dafoe, Jehan ‘Gigi’ Joseph-Garrison, Nevra Liz Ahmet, Jenny Rowbory (Stroopwaffle) Anil van der Zee, Naomi Whittingham, Ketra Wooding, Jamison Hill Moderate/Severe: Wilhelmina Jenkins, Jessica Taylor-Bearman, Rivka Solomon, Ben H Moderate: Laura Elliott, Lorna McFindy, Kaitlyn Blythe, Ashanti Daniel, Jane Colby, Ryan Prior, Long COVID: Fiona Lowenstein

Science team: Jaime Seltzer, Open Medicine Foundation, Ron Davis, Tom Kindlon, Cort Johnson, Keith Geraghty, Nancy Klimas

Clinicians: Doctors With ME, Physios For ME

Lobbying: Jenny Spotila, Carol Monaghan SNP MP

Patient-led: Chronic Illness Inclusion Project, Phoenix Rising

Solidarity: EDS, POTS, MCAS, Fibromyalgia, Lyme, Lupus and all ELCI

Manifesto: Brianne Benness #NEISVoid, Phoenix Rising

Allies: George Monbiot, Carole Cadwalladr, Luke Harding, Haji Mohamed Dawjee, Dr Frances Ryan, The Disability Enthusiast, The Chronic Iconic

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Downhill

The first time I ever met Ethiopians* was when I was volunteering in the Soetwater refugee camp in May 2008, a couple of days after an outbreak of xenophobic violence across South Africa had caused an exodus of immigrants from townships. A group of young men had come to the camp management to complain about the system of hastily erected tents which grouped people by country: Zimbabweans, Congolese, Somalians etc. Their leader, who was smouldering with rage, asserted indignantly “We are not Ethiopian. We are Oromo!”

Up until that point I had never heard the word, despite the Oromo people being the largest ethnic group in the second most populous country on the continent. The young men had left Ethiopia because of the heavy discrimination Oromos (34% of the population) were suffering under the ruling Tigrayan minority (6%) back then. There are over 35 million Oromos, compared to an estimated 12 million Zulus. Imagine how Zulu people would react if the Venda were in charge for nearly 30 years and only hired their own people?

During his conquest of the Oromo in the 1880s, Menelik II’s army carried out atrocities including mass mutilation, mass killings and large-scale slavery, apparently in retaliation for the Zemene Mesafint, the period when a succession of Yejju Oromo feudal rulers dominated the highlanders. Under Emperor Haile Selassie, the Oromo language and culture were sidelined by the Amharic elite. I battle to understand the complexities of modern Ethiopian ethnic federalism but it seems tit-for-tat patterns of tribal repression and retribution have been going on for centuries.

A Brief History of Ethiopia part 7

From the fall of the Derg in 1991, Meles Zenawi, a Tigrayan at the head of the EPRDF coalition, was in power (and increasingly autocratic) until his death in 2012. When the next Prime Minister Hailemariam Desalegn resigned after three years of anti-government protests, Abiy Ahmed Ali succeeded him on 2nd April 2018, the first Oromo ever to take the role.

In 2016, 100 peaceful protestors against a government plan to seize land had been killed by government gunfire in the Oromo and Amhara regions. In 2017, Oromo–Somali clashes led to around 400,000 being displaced. In 2018, Gedeo-Guji clashes in the south of the country led to Ethiopia having the largest number of people in the world to flee their homes: 1.4 million displaced.

In September 2018, Prime Minister Abiy Ahmed and Eritrean President Isaias Afwerki signed a historic peace agreement, ending 16 years of hostility between the two countries (the ‘no war, no peace’ stalemate). As a result, Abiy Ahmed received the 2019 Nobel Peace Prize. However the great promise of his first months in power (that we were there to witness), when he preached peace and reform, released political prisoners and unbanned opposition groups, has been heavily overshadowed by recent events.

On 29th June 2020, following the assassination of Oromo musician Hachalu Hundessa, composer of the anthem Maalan Jira (about the eviction of Oromo farmers in the expansion of Addis Ababa), protests broke out across Ethiopia, leading to the deaths of 239 people. Since then there has been an escalation of ethnic violence.

The federal government requested that the National Election Board of Ethiopia cancel elections for 2020, citing health and safety concerns about COVID-19 and promising to set a date for the next election once a vaccine was developed. The Tigrayan ruling party, the TPLF, opposed the cancellation and proceeded to hold elections anyway on 9th September 2020.

Relations between the federal government and the Tigray regional government deteriorated after the election. On 4th November 2020, in response to TPLF attacks on army units stationed there, Abiy began a military offensive involving Eritrean and Amharan troops, causing 11000 refugees to flee to neighbouring Sudan and triggering the Tigray War. Between 600-1100 civilians may have been killed in a massacre in the town of Mai Kadra on 9th November 2020. 110 civilians were killed in the city of Axum on November 27th and 28th.

Ethiopians finally go to the polls today, Monday 21st June 2021, amidst allegations of hunger and rape being used as a weapons of war in Tigray. I recommend the final ‘Start Here’ video in this Al Jazeera election overview as excellent background.

Meanwhile, the dispute between Egypt and Ethiopia over the Grand Ethiopian Renaissance Dam (which began construction in 2011) also escalated in 2020. Egypt opposes the dam, fearing that it will reduce the amount of water it receives from the Nile; Ethiopia contends it will help regulate floods and reduce evaporation. The GERD-reservoir, once filled, will have a total water volume of 74 km3, 3 times the volume of Ethiopia’s largest lake, Lake Tana, and provide 6000MW hydroelectric power. Filling it will take at least 5 years.

In October 2019, just after receiving the Nobel Peace Prize, Prime Minister Abiy warned that “No force can stop Ethiopia from building a dam. If there is need to go to war, we could get millions readied.”

* * *

On the road south out of Addis into Oromia, Big Reg chugged past the impressive African Union headquarters and the enormous Meskel Square, site of so many protests, before passing through Shashamene, the ‘promised land’ granted by Haile Selassie to the Rastafari community.

The day after we left Addis, I woke feeling so much better. We’d dropped from 2500m to 1600m on the terrible road out of the city – it had to be the altitude that had caused all my weediness. It was the first night I didn’t need a sleeping bag and the increase in warmth was giving me a huge increase in energy. My goodness, the ease of getting up was like a gift! Especially compared to the day before feeling so deathly at the Mercedes garage Orbis Trading where they’d kindly checked Big Reg over and ‘greased his nipples’ before we set off. Many thanks to Orbis GM Rolf Gautschi and manager Mr Haile Mariam.

Zola on the other hand was feeling worse. He had puked again during the night after having awful sulphurous burps the whole day yesterday. That could mean only one thing: giardia, so we started him on a course of metronidazole. He slept most of day as we drove south through the increasingly green land.

PJ was proving herself the ultimate Truck Cat on this rough road – no matter how bad it got, with the bumps throwing her body around, she never woke, just resettled herself comfortably on her pillow next to the passenger seat. Once the truck banged down so hard a container on the roof split and caused a major oil spillage; Sampson had to stop and mop up.

The extra energy meant I finally felt strong enough to talk to my husband without getting tearful. I waited until he’d calmed down and was able to focus and screwed up my courage to ask quietly, “Are we done?”

He knew immediately what I meant.

For two days previously, he’d been utterly vile to me. Looking back, it’s obvious Sampson was patently not coping with my encroaching disability and had gone from denial to anger, but at the time I just felt completely at the mercy of his self-pitying melodrama. It didn’t matter what time we drove across the city to the garage, but wasting my energy arguing about it and then doing what I’d first suggested anyway was ridiculous and, because I was at such a very low ebb to start with, dangerous.

He’d told his future sister-in-law to go ahead with booking his flight to their UK wedding without discussing any of the ramifications with me. When he interrupted Maths to shout at us, accusing someone of stealing the last pair of clean socks he needed to drive I decided: Enough. I cannot live like this – even if I have to abandon the trip. It was turning me into a gibbering wreck.

At Jo’s house I’d realised I have Peace without him. Even if it would be physically hard to cope alone, even weak and ill, it would be better to be calm and collected, to be able to pace with no emotional bombs thrown. I’d started thinking about the practicalities of going home and either living in Fish Hoek or the Eastern Cape for the next 3 years until Zola finished high school.

We managed to have a composed conversation discussing separation like adults. I said it would have to be after his brother’s wedding and Ruby’s next visit, but either way I can’t go on like this and won’t because it’s not good for Zola to witness. I only once stalked off to the loo after he said “When you thanked me yesterday for changing the bin it meant a lot because you never notice that everything I do, I do for you” leaving him with “In all these years you’ve never once thanked me for teaching. Think on that till I come back”.

He was doing a good job pretending to be fine with it all. But after kicking out at the cat again, I shouted at him: “If you don’t stop, I will kick you every time you kick her”. Finally I had the strength to stand up for us.

I made supper at the same time as lunch then lay down in the back for the afternoon drive because I’d done more than enough both physically and mentally. But I was quite chuffed to find myself feeling better: it meant my body agreed this has to be the way forward. We arrived at the Wabi Shebelle community resort at Lake Langano in the mid afternoon. On Jo’s recommendation, we’d decided it would be the perfect place to park off for a couple of days to let us all recover a bit.

Sampson negotiated 300Br for the night and parked Big Reg in the grass. I opened the sidedoor and was surprised by birds. It was like a nature programme, dozens of iridescent cobalt blue, copper and yellow fellers flocking round a tree in front of us plus a giant white and brown one with huge head and tail feathers. The following day I even saw an owl! Sampson took these – I wasn’t up to holding the camera up for that long:

Zola stayed in bed while Hub and I walked down to the lake. We were shocked to find it choppy and the colour of builders’ tea.

The sun was fierce and there was a boat-shaped empty building acting as a windbreak so I had a gentle swim – my first since France – in the silky silty water, then basked in the shelter of the steps, feeling blessed. We had a lovely evening, Zola was feeling a bit better and enjoying Six Feet Under.

The next day, despite PEM, I was enjoying writing and jollied a sullen Zola through French to get us both down to the lake for a perfect 3pm dip. He swam right out to the middle, much to the consternation of a schoolbusful of shrieking teens at the shore. Sampson was reading his birthday book Barbarian Days and I had Romola – we shared happiness seeing our son frolicking in water once again. All was calm and blissful and supper was already cooked; another lovely evening seemed assured.

How did a huge row erupt over tomato paste? How did my husband end up threatening me with his own mental breakdown? Suddenly he was revving up the truck, trying to pull off the grass with a loose pan of sauce bubbling on stove. But worst of all, after we’d agreed – he’d promised – that nothing was to be mentioned to the kids until after Ruby’s visit, in front of Zola he said “Yes, let’s just go quick to Mombasa then I can go and stay a month in UK. It will be good to be apart like you said”.

I packed everything away. I lay on the bed feeling completely numb while he moved the truck. I only cried later thinking of Ruby. I played her Cobblepot voicenote twice to cheer me. The unnecessary drama continued when some guys came knocking asking for money and Sampson decided to mention he had a (non-existent) gun?

So instead of a lovely calm evening and an early night, a great sleep and a golden morning walk by the lake, I woke feeling like a ragdoll that had been shaken violently the whole night. After all the upset and crying, my brainstem was battling more inflammation than when we arrived at the lake to spend a couple of days calming it down.

Before Big Reg continued on the horribly bouncy highway south past Wendo, I took 200mg Ibuprofen. It gave me one hour without pain, wedged in with my purple flight pillow on the bed in the back, as Sampson careered around dozens of tuktuks driving like dodgems around the animals and people wandering across the road. I was so dizzy to start off with, it felt like I spent the whole day on a rollercoaster.

At 1pm I had to use my emergency whistle to get Sampson’s attention to stop driving like a lunatic and eat lunch. After another 400mg Ibuprofen, I sat strapped in the front – I’d missed the transition from thorn trees and sand to rich red earth, coffee and banana trees. I figured I was going to feel terrible either way, so I might as well enjoy a view of more than the sky.

Wanting to make the post-painkilling-pills kidney ache worthwhile, I tucked into a bag of cherry flavour chews. The road got harder with long unsealed sections making it very slow going and relentlessly rough. My dizziness got so intense, I was trying to teach without turning my head back to Zola sitting on the bench behind us.

It was getting late and we were beginning to despair of finding a relatively empty place to pull over and park in this most populous province in Africa without constant “You-you-you” and “Money, money” demands, when I spotted a school sign on a gate with a big grassy expanse behind it and suggested we ask for shelter.

It was a brilliant solution: the caretakers were gentle and welcoming. The only problem was that when I got up from my seat to fetch the press file to show them, the world started spinning wildly – WILDLY. Not just my usual got-up-too-quick just-stepped-off-a-fairground-ride feeling but STILL ON IT AND SPINNING.

The vertigo was so extreme I couldn’t walk down the corridor. It was very frightening but Zola was panicking about being seen by strangers so refused to come down out of the nose cone to help me. I was sorely missing Ruby’s instinctive care – she would’ve had me on the bed in a trice and the kettle on. But Sampson made a big effort that evening, making his signature pizza potatoes with Ethiopian Gouda cheese ‘made the Dutch way’ to accompany the last Six Feet Under.

We passed a peaceful night, although twice I woke to find the ceiling still swooping circles around me in the dark. In the morning, as the kids of the Church of Christ Mission School For The Deaf lined up with their hands on each others’ shoulders singing, we chatted with director Mr Kebde Urkaso and the driver who had arrived with a new batch of trainee preachers. Samuel Birra told us of the Mission’s great work – he’d personally sunk the well in the compound, one of 260 sunk in Southern Ethiopia thanks to their US funding. The school had been running for 50 years despite pressure from successive governments and constant corruption.

Samuel was so lovely, he insisted on trying to help Sampson get data. When he found he couldn’t – because foreigners were not allowed individual access to the internet – he gave him an old iPhone that was registered in his name, but put our SIM in the other cradle. We were online! For the first time since we’d arrived in Ethiopia 6 weeks before! While lying inside the truck, without having to sit up in a hotel lobby! It was life-changing. And all Samuel said was “Mail it back to me when you get to the border”.

Can you imagine a total stranger offering to do that for you in Europe?

Our friend Samuel is the man in green at the back on the far right of the group pics above.

Sampson did a magic show for kids during their breaktime. Zola didn’t set foot out of the truck, but was doggedly progressing through some challenging geometry. I was getting ready to cook when Sampson handed me my laptop with my emails finally downloaded – and there was one from my best friend from uni describing the latest Greece blog as “beautifully written and an important untold story”. I was so touched I found myself sobbing. It was a shock to realise how much I was craving creative validation from peers, having been so isolated for so long. I spent an hour writing a grateful reply and started dreaming about visiting my friends in Scotland.

Meanwhile Sampson was dismayed to receive an email from his brother who, overwhelmed by wedding stress and unable to cope with the extra challenge of booking a flight from Africa, was suggesting perhaps he shouldn’t bother coming. I managed to head off a potentially fatal mutual sulk. It seemed ironic that Sampson was showing zero empathy for his brother, although he knows he doesn’t cope any better than he himself with stressful situations, when he was constantly demanding sympathy from me. I said “You can’t get upset with him! You’ve got to go help! It’s going to be wonderful for both of you.”

(I do appreciate that accusing my husband of ‘self-pitying melodrama’ is doubly ironic seeing how that’s what this entire blog has turned into, but I have to tell myself I’m doing this, exposing our failings, to comfort others with chronic illness battling to get loved ones to understand. ‘In sickness and in health’ was never meant to encompass permanent sickness in conjunction with fragile mental health. Bear with us, we get better at being kinder.)

Our afternoon drive was so relentlessly bumpy, I missed the following photos: a shot left down into a subsistence economy village market packed with people piling in with produce from bananas to goats; a boy carrying dozens of plastic bottles wrapped round his head like a hedgehog; a woman balanced backwards on the back of a motorbike holding a chunky cathode ray tube TV.

We stopped on the side of the half-built highway in the middle of nowhere under a mountain slope opposite the abodes of the extended family of Mr Aish. The next morning, a woman took advantage of the truck’s shade to wash a cotton wrap with loads of soap in muddy water on a banana leaf. It looked like the future of water-compromised Africa to me.

As usual, as we approached the border, the road became predictably more hellish, although we’d reached a happier equilibrium ourselves. Big Reg was averaging about 20kmh. I sat upright in the cab for an hour just to get a feel of the new greener scenery; people were significantly poorer, more Muslim, more colourfully dressed (orange, pink and red combos were suddenly in). There were many women, and even little girls, labouring under loads of straw twice their size. And dozens of women carrying heavy packs of folded banana leaves, while dozens of men and boys stood around gaping at the truck. Women are always far too busy to stand and look.

After lunch, I again had to take Ibuprofen and lie in the back with only a view of the sky and blurred treetops out of the window as Big Reg swayed around the Chinese Caterpillar excavators working on the road. The bumps got so violent, the wardrobe door sprang open three times. I spent the whole afternoon trying to stay online long enough to post this May 12th selfie as part of #MillionsMissing 2018.

I had a growing awareness of how lucky I was to be in the truck, my ‘room on the road’. Not as isolated as if I was marooned upstairs at the back of a house. I’m in bed but it’s in the middle of the kitchen, in the middle of the living room, in the middle of the classroom. I can inhabit all those places relatively easily, and not have to hike to get there, as it felt like at Jo’s house.

The road improved and Sampson found a great place to pull off just before Finchawa, but it turned out to be next to a bus stop and was soon swarming with lads. Zola made the best dahl ever for supper – his cooking skills were becoming legendary – but the crowd outside didn’t dissipate by supper time and the constant haranguing and leering faces at the windows spoiled it somewhat. Sampson was fantasising about fixing up a hose to spray sewage or setting up a dogbarking stereo system even though we knew any response would just escalate attention. So we just sat in the dark waiting for them to get bored, give up and go home. Finally we were able to watch a silly fun episode of Misfits before bed – I love it when Zola laughs out loud.

The next day PJ was out at dawn, and I got up at 7am and came out as reinforcements for Sampson, who was surrounded while his morning stretching. The demanding early morning crowd was led by a boy on a motorbike who looked way too young to be driving. He was much cleaner and sharper dressed than the rest, in a Michael Jacksonesque jacket and a high perched cap.

I played the crowd like the pedagogue I am, first ignoring him and concentrating on greeting the girls, then gently mocking his attempts to also stand firm on one leg when invited, then praising his efforts. I told my husband that the most annoying boys are always the ones with the most potential. If he was born here, he would have been the bolshy one shouting.

In the end Mini Michael became my translator and aide, explaining who we were to new arrivals and shushing those who pitched up blaring music from a tinny speaker just as he had! He was so gutted when we left, I think he was half hoping I’d take him with us as ‘we must have done’ with Zola. I was a little heartbroken myself and so happy when he followed us a little way on his bike so I got a chance to ask to take a photo of him. He was a kindred spirit and I could have loved him like a son.

His name was Gamatcha

*The first time I ever heard about Ethiopia was thanks to Bob Geldof in 1984 – I urge those with warm fuzzy memories of Live Aid to read the brutal truth about his collusion with the Mengistu government-engineered famine and resettlement programmes here and here.

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Altitude

NB After 14 months’ successful shielding to avoid COVID-19 in Cape Town – thanks to scrupulous hygiene protocols observed by Sampson – I succumbed within 14 days of arriving in a coronasceptic house here in Cabo Verde. I tested positive in the first week of May and Ruby in the second. We are both blessed to have experienced relatively mild symptoms, avoiding severe respiratory challenges, but I’ve been even more exhausted than usual. So forgive me for not managing more than one installment this month. If you can, please help me to complete the Africa Clockwise story via Patreon.

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The city of Addis Ababa lies between 2300m to 3000m at the foot of Mount Entoto, a few miles west of the East African Rift. It is so high that, despite being so close to the equator, no month has a mean temperature of above 22˚C. We were there more than 3 weeks, met some wonderful people and a fabulous family opened their hearts and their home to us. But quite bizarrely for me, it was also one of the most physically challenging times on the trip.

PJ checking out the Rift Valley

Big Reg had been burning fuel at a faster pace than usual over the mountains from Lalibela, so replenishing our tanks with WVO was our main priority. Sampson had sent a raft of emails from Gondar hoping to get collection underway in advance, and we were thrilled to be welcomed so enthusiastically by staff at the Marriott Executive Apartments, Addis’s premier longstay hotel, who already had 140L oil ready and waiting for us! What’s more it was the cleanest WVO in Africa because they change the oil in their fryers every 24-48 hours. Special shout out to Nino Constantinou, the kindest General Manager so far, and his right hand woman, Director of Sales Tigist Juneydin.

It was phenomenal to have access to the internet once again and to be able to work on the wifi in their plush foyer. I was astonished when a concerned Marriott staff member rushed to bring an extra winged chair especially for my backpack.
“In Ethiopia, we believe that if you leave your bag on the floor, you will lose your wealth as your money leaks into the ground.”
Maybe that’s where I’d been going wrong!

I got rid of the depressing countdown calendar on the wardrobe with Ruby’s leaving day on it and wrote a new one – it was 2 months exactly until we were due to pick her up from the airport in Mombasa! We were all missing her.

The day after she left, Monday 16th April 2018, we went back to school. After a morning gym session with Sampson, Zola made a good start on term 2, until an English lesson challenge to make an ‘unprepared speech’ pulled him up short; he point blank refused to stand up or even begin to consider what was ‘unique, special, weird or wonderful’ about him! Despite me pointing out his freakish natural ability for unicycling and juggling, or the fact that he’d travelled half way round Africa before becoming a teenager.

The next morning, as his Dad was on the roof filtering oil, Zola’s sheer anger and frustration at the prospect of being forced to enter the hotel alone to get to the gym caused him to punch his bare fists repeatedly into the surf locker. Sampson’s less than diplomatic response caused a ridiculous escalation, but Zola gradually calmed down and stopped obsessively writing out Despacito lyrics.

I was beginning to grasp that my son was going to need more constructive help to develop strategies to cope with his increasing social anxiety. I was thankful that he wasn’t in a formal school situation, being labelled or bullied for his reserve. Even if he was at the very mild end of the spectrum, we had enough time to help him find his way to empowering himself before returning to a classroom the following year.

Later that day, I engineered a talk with both of them about sharing responsibility for emotional labour. Once Zola got going he was impressively articulate: he spoke about his initial blanking that paralyses him from speech (like a stammer); how the voices in his head make it difficult for him to speak; how he feels overwhelmed being surrounded by such fluent talkers in this family. To his Dad he added, “Mom never makes me feel stupid but you and Ruby…mock me”.

We spoke about how the vileness of being 13 going on 14 is pretty standard for everyone but that we appreciate Zola’s situation is particularly hardcore, trapped in a box with his parents. Sampson asked if he could try and help us help him by explaining his frustrations whenever he can? I underlined that we hoped we were being cruel to be kind, constantly exposing him to strangers on this trip, as it was building up his capacity to engage. Rather get used to it now, with us, than be forced to do it alone later in life? We were very proud of how that evening he screwed up his courage to ask Chef Yonas to enter the code to open the gym door for him. That night I spent a couple of hours fixing his chlorine–ragged dreadlocks and gave him a little hug before bed; we were all feeling much better.

On Wednesday, Zola and I had really special day together. We had a breakthrough with some Maths and the prescribed English lesson was so dull, I rather set him to write about yesterday. Initially he resisted but in the end wrote eloquently, explaining that he can’t hear us talking in the midst of his rage, that his anger seems to unlock a deeper well of “hopelessness and loss”, that he fears a pressing imperative to hurt himself and dreads the future. I responded by speaking about the possible effects of profoundly suppressed feelings: of being taken from his mother at birth, losing the chance of an easier life perhaps, less exposed as a Black child at the heart of a Black family.

A Brief History of Ethiopia part 6:

Menelik II’s chosen successor, his grandson Iyasu V, was deposed, so his daughter Zewditu was made Empress in 1916 while her cousin, Ras Tafari Mekonnen, was made regent. On her death in 1930, the Ras was crowned “His Imperial Majesty Haile Selassie I, Conquering Lion of the Tribe of Judah, King of Kings of Ethiopia and Elect of God.” Haile Selassie set out to modernise Ethiopia, abolishing slavery and establishing schools and other educational institutions.

For 6 years from 1935, Ethiopia was under Italian occupation as part of Italian East Africa, as Mussolini sought revenge for the Battle of Adwa. During this time Ethiopians were subject to atrocities such as use of mustard gas in aerial bombardments in defiance of the Geneva Conventions.

Haile Selassie was exiled to Britain until the Allies drove the Italians out of the country in 1941. Ethiopia and Eritrea united in a federation, until Haile Selassie made Eritrea a province of Ethiopia in 1961, precipitating the 30-year Eritrean War of Independence. In 1963 he helped establish the Organisation of African Unity.

Haile Selassie was overthrown in 1974 when the socialist military junta, the Derg came to power. The 83 year old Emperor was murdered, either strangled or, it was rumoured, smothered with a wet pillow perhaps by Mengistu Haile Mariam himself, and dozens of church and state officials were executed without trial.

With the assistance of Soviet and Cuban forces, a Somalian invasion was pushed back in 1977. Communism was officially adopted and from 1977-78 the Derg government tortured or killed hundreds of thousands of suspected enemies in the Qey Shibir or Red Terror. Amnesty International estimates the death toll could be as high as 500000.

The collapse of the People’s Democratic Republic of Ethiopia was hastened by famine in 1984 that affected 8 million and killed 1 million people. Civil war resulted in the fall of the Derg in 1991 and President Mengistu fled to Zimbabwe, where he received sanctuary from his friend Robert Mugabe. He was found guilty of genocide in absentia in 2006 and was sentenced to death in 2008, but to this day has not been extradited.

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As is my habit, I tuned into local radio to get a feel for the city. After listening to news of the Pan African University planned for Adwa on Afro FM, I was suddenly electrified at the prospect of doing a PhD on the pride- and identity-building potential of a PanAfriCarnival circuit showcase, like a Carnival Olympics (as previously discussed with my colleagues in Guinea Bissau).

We were stupidly excited to visit the Abadir supermarket on our way to the Sheraton Addis, as we had nothing left in the food cupboard but tomato paste. But after unloading a stack of tins, I had a nasty turn – a muscle spasm clamped my heart so rigidly, I couldn’t breathe for a minute or two. The following day I woke tireder than expected, feeling vaguely like I was on an aeroplane: struggling to breathe, with blue hands. People with ME have low blood flow to the brain to begin with, and I began to wonder if it was the altitude that was causing more strain?

Sampson drove the truck down to the Sheraton kitchen delivery entrance to load 500L used oil – our largest ever single donation. Many thanks to Director Eng. Solomon Abebaw and Chief Steward Daniel Tesfaye plus water treatment technician Yitagesu Tefeva pictured below. Even General Manager Anthony Wade “from Teesside” made time to pop down to see us.

While the boys did a huge amount of physical labour, filtering all that oil into the tanks, I was writing a history of M.E. into a blog on Greece in between making lunch and supper. I had recently read a eulogy for Mag Friel who took her own life after living valiantly with severe ME for 25 years and had decided I had a responsibility to start telling it like it is. (As I’m writing this up, three years later, there’s news from another ME suicide inquest: 23 year old skater Dan Sterling from Plymouth who’d been ill since he was 16.)

When the rain came down, I made hot tea for the Sampson boys beavering away on the roof. As I got colder and achier, I reflected how ridiculous it was that my arm muscles felt as sore as theirs were after shifting dozens of 25L oil containers around, although all I’d done was type and chop vegetables.

We did an SABC interview with delightful Kenyan Colette Wanjohi and her Ugandan cameraman Eodes Sekyondwa. Even Zola managed a few words! (Looking back now, I can’t believe how much his voice has dropped since.)

The Sheraton was huge and terribly grand, with immaculate lawns popular for wedding photos. The rest of that week, Zola and I enjoyed exploring the grounds on our morning walks.

Even walking around this model of the Sheraton Addis was quite a challenge! The truck was berthed in the enormous car park in the top right hand corner under the flags.

We also wandered around inside, perusing the magnificent African art displayed on the lobby walls. My favourites were the woven bamboo and goatskin piece Culture 1997 by Zerihun Yetemgeta (born 1940) with the Amharic inscription ‘A lucky culture is life’s honey’ and an exquisite Klimt-esque oil painting Before Hunting 2010 by Getahun Assefa Balcha (born 1967). l adore his work.

I made the most of the excellent wifi, did a PR push to four Ethiopian newspapers and got commissioned by monthly listing magazine What’s Out Addis. While doing a bit of research on new Prime Minister Dr Abiy Ahmed, I realised he was in the Sheraton at that very moment, meeting with business leaders before continuing his tour of the provinces – he was off to Gondar the next day.

Friday Night Treats included chicken fried in traditional Ethiopian herb butter with broccoli and culminated in the first episode of The Crown – shoo, Downton deluxe! I love how Zola loves this escapist historical drama nonsense as much as me; he just grins and relaxes completely.

At 2am on Sunday he puked spectacularly off the end of his bed onto a pile of shoes below. Despite his vomiting and high fever, we drove across town to the International Community School, as recommended by the SA Embassy, to meet middle school Principal Elizabeth Johnston.

The next morning, Monday 23rd April, Sampson performed the Africa Clockwise interactive show in the ICS’s superb lecture theatre to Grades 3, 6, 7 and 8. The videos went down particularly well, they loved the ‘Waster’ sign and we ran out of time for kids’ questions. The first was from Matthew Hokoma: “Is your son called Zola? I think I was at school with him in South Africa!” Small world.

Ex-Fish Hoek Primary pals Matthew and Zola reunited in the truck in Addis

Sampson set up for a second session with youngsters from the environmental group before being joined by the rest of Grade 4 and 5. When he asked about greenhouse gases, Sampson got schooled by an 11 year old who knew more about methane than he did! He was also utterly charmed by Anouska Hall from 5D who’s lived in both South Africa and Rwanda as her British mum gets posted around the world by DFID.

In between the first and second show, super-friendly drama teacher Jo King asked if there was anything we wanted or needed? Simultaneously, Sampson said “chocolate” and I said “laundry” – she took 2 bagfuls off me.

In the middle of all that, Afro FM breakfast DJs Hawi Negusse and Dawit Betsah turned up – the ICS kids were starstruck! The boys chatted to them while I gave the 2 minute truck tour to around 200 kids and staff in groups of 5 or 6 over lunch time. Zola did so well to cope with that lot!

When we got back to the hotel carpark, I was so shattered I managed a 4pm nap before dear Jo arrived bearing gifts of clean washing and chocolate slabs! We showered and changed into our sprucest outfits for early Freedom Day celebrations at the Sheraton that we’d been invited to by the SA Embassy. There were only 150 people in the vast ballroom but after the speeches the atmosphere warmed up quickly, thanks to a stunning performance by the Sweet Voices of Africa tenors and copious catering, much of it cooked by Embassy staff themselves. Only at a South African celebration overseas do nostalgic NikNaks get served on a silver platter!

And only at a South African formal occasion do the dignitaries break out into choreographed dance moves like pop stars! The Ambassador himself led the dancing as the DJ spun classic SA tunes from Ma Brrrr to Mahlotella Queens to Thandiswa Mazwana. (This was way before Jerusalema swept the social media world, but our diplomatic corps was way ahead of the game!)

You can tell how much Zola enjoyed the boerewors/pap/steak/chicken/droewors feast by how much he’s smiling. There wasn’t a thing there I could eat safely, so I came home desperate for a second helping of soup. We got to bed at 11, and I woke at midnight with cramp so bad it made me scream. I swallowed half a bottle of revolting magnesium salts I’d had in the fridge since France and it abated, thank God. That’ll teach me to join in the dancing…

It was at the Freedom Day celebrations that someone told me about Julia Alba, a fabulous 80 year old woman driving from Cape Town to London in a 20 year old Toyota Conquest. I started following her blog – over the next few months, Julia’s speed was to put us to shame!

The next day, the fumes of burning plastic waste were so bad, we drove round the corner to the Hilton. They ended up donating 100L WVO – many thanks to Director of Operations Julian Reynand, Chef Yvonnick Jegat and Security Chief Mr Sileshi Tesema.

While Sampson was stressing about his forthcoming trip to the UK for his brother’s wedding and I was writing, Zola was becoming fascinated by music theory time signatures. After supper Jo came by to collect 6 more bags of washing – what a darling!

On Thursday we were up at 6am for our Afro FM interview (thanks to producer Mr Solomon). I enjoyed listening to the breakfast DJs playing vintage Stevie Wonder and all the buzz about Beychella as I got in shower. Hawi herself came to the Hilton with their driver to fetch us – she was incredibly glamorous even at that time in the morning. Sampson told some great stories, making DJ Dawit laugh uproariously at his “Lagos is like Jo’burg with menopause – hotter and more violent” routine. Zola couldn’t give more than one word answers, but DJ Hawi played Boss by Fifth Harmony for him anyway.

Sampson’s menopause knowledge was based on facts. By now, I was having so many hot flushes, they were waking me hourly through the night.

On Friday 27th April itself, Sampson did another presentation for the YNCCC (Youth Negotiation on Climate Change Convention) at Addis Ababa University. Our contact there, Yared Abera, is a climate activist of note: in 2015 he toured 9 universities to raise awareness in the run up to COP 21 in Paris. Since 2016, he has been the YNCCC’s Communication and Media Director, and even accompanied Ethiopia’s Environmental Minister to COP 23 in Bonn.

Sampson enjoyed talking to this smaller but very enthusiastic group – special mentions for IT whizz Yohannes, Joachi in the purple waistcoat and the quiet girls. Zola sat at the back but definitely felt more comfortable with this older crowd. Afterwards we bumped into a posse of students who had come to campus dressed in traditional garb to celebrate a ‘Many Cultures of Ethiopia’ day – Sampson was proud to be called into their photo shoot as he was sporting his new favourite Lion of Zion T-shirt!

As we were so near, I insisted we visit the Ethnological Museum which was also on campus. It was officially established in 1963 to collect information on Ethiopian civilisation: history, cultures and languages. We parked right outside.

The Institute of Ethiopian Studies is housed in what was formerly the Gännäta Le’ul or Princely Paradise Palace, constructed in 1934 for the Emperor Haile Selassie and his family. In 1936, when Italian forces occupied Addis, the Fascist Viceroy Rodolfo Graziani moved in. The palace became the center of international attention when two Eritrean nationalists attempted to assassinate the Viceroy, and Graziani responded by initiating the Yekatit 12 massacre where up to 30000 civilians were killed.

Behind the flag is a spiral staircase built during the Italian occupation. Each step marked a year of Mussolini’s rule and was meant to symbolise Fascist domination. Upon the restoration of Haile Selassie, the Lion of Judah statue was placed atop the staircase.

Following liberation by the Allies, the palace became the (unofficial) headquarters of the Empire. It was also the site of the failed coup d’etat of 1960, which marked the beginning of the Ethiopian student movement, with public demonstrations against the government for political, economic and social change.