#LonghaulersUnite

This is a call for all Long COVID-19 and chronic illness sufferers to come together to make our voices heard. A rallying cry for those too weak to march and protest. A covenant for those physically unable to stand up for our rights.

On 9th July, Director of National Institute of Allergy and Infectious Diseases and member of the White House Coronavirus Task Force, Dr Anthony Fauci commented that an emerging pattern of extended COVID-19 symptoms is “highly suggestive” of Myalgic Encephalomyelitis. For months, people with ME and ME activist associations have been publicly expressing concern that health authorities are not prepared for the avalanche of post-viral effects about to come crashing down on the lives of millions of patients across the world (see the Washington Post).

Groups of long-term COVID-19 patients across Europe and the US have been gathering on social media to compare notes on a frightening array of fluctuating symptoms and the medical profession’s unwillingness to engage with them about it (see The Atlantic). They are aghast to still be riding a rollercoaster of fever, chest pain and heart palpitations, headaches and muscle pain, gastrointestinal and sleep disturbance, cognitive problems and debilitating fatigue – weeks and months after official guidelines suggest COVID should be over (around 2 weeks) and when all their tests keep coming back ‘normal’.

It is estimated that at least 10% of all COVID-19 sufferers are being affected in this way (see The Guardian). Many of them were considered relatively mild cases, and are relatively young. 26 year old Fiona Lowenstein, who told her story in the New York Times, founded a Slack group for long-haul sufferers now numbering in the tens of thousands. There are five times as many members of the Survivor Corps Facebook group, many of whom, like several #AprèsJ20 groups in France and sufferers in UK, are reporting a slew of post-viral complications in longhaulers.

Welcome to our world.

For millions of people with ME and other chronic comorbidities (EDS, POTS, MCAS, Fibromyalgia, Lyme disease, Lupus etc) this has been our lives for years. We are hobbled less by the ball and chain of our pain as by the Sisyphean boulder of our exhaustion; just getting through each day is a marathon of endurance.

I know about long haul. For the last 6 years, my family trekked through 38 countries around Africa Clockwise in a 10 ton truck running on waste vegetable oil, sourcing it from hotels en route. Over 47000 km, we battled extreme weather and appalling roads, breaking down 26 times. To say we travelled at a snail’s pace would be an exaggeration. In the last year alone we spent 146 days living in garages enduring 3 engine rebuilds (see Carte Blanche TV).

But I wouldn’t count any of this as long haul compared to the years I spent in a darkened room in my early twenties suffering from severe ME. I fell ill in August 1992 aged 22, having contracted giardiasis less than a year after glandular fever, setting off a cascade of symptoms that have waxed and waned ever since but never relented. For 6 years I couldn’t work; for 2 years I scarcely got out of bed. At times, my parents had to bath and feed me. People with very severe ME don’t even have enough energy to swallow and have to be tubefed. Having another person in the room triggers agonising symptoms. Their pain is unimaginable.

When Professor of Infectious Diseases Dr Paul Garner described his 7 week COVID “hell” in the Guardian, his list of long-tail symptoms sounded exactly what living with moderate ME feels like. I currently have all the symptoms listed at 30 secs on this Long Covid SOS video daily, except for the cough.

For a month in Cote d’Ivoire in 2014, I had malaria and typhoid at the same time and it was a breeze in comparison. With malaria and typhoid you either get better or you die – the suffering does not go on infinitely. Crucially, there is acknowledgement of the gravity, well-funded research and effective medication for both of those diseases.

On the other hand, since the 70s, ME has been dismissed as a ‘conversion’ ‘functional’ or ‘somatisation’ disorder, ‘women’s problems’, anxiety/stress or all three: ‘hysteria’. A group of influential psychiatrists have made a career out of insisting our symptoms are all in our heads, ignoring the vast literature documenting their organic basis. This has been enormously convenient to governments and the medical insurance industry, who have pocketed a fortune denying social security benefits and the financial support due to those disabled by energy-limiting chronic illness (ELCI) . (See my August 2018 blog M.E. Too detailing the history of Myalgic Encephalomyelitis.)

Slowly but surely, hundreds of thousands of people are realising that they are never going to recover from COVID-19, but now have a chronic post-viral condition that is going to affect their capacity to work, study and parent. Be assured that medical insurers across the globe are already mobilising to avoid covering the cost implications. Governments at risk from class action suits claiming criminal neglect of their duty to protect will be doing the same. Those most unable to fight for their rights are going to have an epic battle on their hands.

Legendary lifelong civil rights activist John Lewis died last week. He was one of the original Freedom Riders, marched alongside Martin Luther King at Selma and famously advised “Never be afraid to make some noise, and get in some good trouble, necessary trouble.”

This week I watched Crip Camp, a brilliant documentary charting how a 60s summer camp birthed the disability rights movement of the 70s which led to the Americans with Disabilities Act of 1990. During the first militant protest in 1977 when the Disabled In Action spontaneously occupied a government building, the Black Panthers provided them with hot food every day for a month.

Such solidarity is vital.

In 2011, incensed at the ignorant racism of white feminists, Flavia Dzodan seethed “My feminism will be intersectional, or it will be bullshit.” Germaine Greer and JK Rowling have discredited themselves demonstrating that feminists who exclude trans women from their struggle are perpetuating the hierarchy of the patriarchy. ‘Healthy’ disabled people who, in the face of an ableist infrastructure, understandably insist that disability is not sickness but merely the state of being overlooked, may ironically be perpetuating the marginalisation of the chronically ill.*

Invisible illness is the last great frontier for freedom fighters.** Because, unlike our BIPOC/BAME/historically disadvantaged, LGBTQIA+ and ‘healthy’ disabled brethren, the chronically energy-impaired are physically unable to protest. Most of us are unable to get out of bed. Most of this year, I have had to plan ahead to muster up the energy to cut my toenails.

So how can the chronically sick start mobilising now to prepare for the inevitable struggle ahead?

1) Virtually stand together: ME sufferers’ cumulative experience is a huge online resource that the growing long-tail COVID-19 cohort can call on. Finally we have something valuable to contribute to society: we’re experts at this! We live in lockdown. Social distancing is what we do to survive. Isolation is our normal.

We can share both physical pacing and mental coping strategies – for combating yo-yo boom and bust energy cycles, for diet and sleep management, for dealing with disbelieving doctors and family members. Most importantly, we can help Long COVID sufferers avoid potentially devastating and detrimental medical advice and therapies that could reduce them to wheelchairs or worse. #LonghaulersUnite

2) Create a Chronic/COVID Coalition: In the spirit of ‘Nothing about us without us’, the chronically ill community should nominate a global group of 30+ trusted ambassadors to represent us, alongside Long COVID groups, ME associations and scientific experts like Ron Davis from the Open Medicine Foundation etc. With Merryn Croft‘s mother’s words ringing in our ears (“what other illness gives the least attention to the worst affected?”) longstanding activists should be chosen with an emphasis on including the views of the most severe – only then will the true risk of ignoring their voices be weighed. Please post your nominations in the comments or Twitter thread.

3) Lobby medical authorities such as WHO, CDC and NIH (USA), NHS and NICE (UK) or Dept of Health in each country:
– to acknowledge the existence of longtail COVID-19 as another disabling post-viral syndrome
– to end dangerous recommendations for Graded Exercise Therapy for newly diagnosed people with ME (NICE has already discontinued recommendations of GET for Long COVID)
– to release more urgent research funding to pursue overlaps now.

4) Recruit a faithful band of allies: Call on carers of Long Covid sufferers to step up and add their voices to the chorus of chronic illness survivors and supporters who have been calling into the void for decades. If each new patient can persuade one other person to act on their behalf, stand in their Millions Missing shoes and march in their name, post-pandemic we could finally be a force to be reckoned with. #LonghaulersUnite

5) Plan for direct actions: some ideas – please feel free to add yours.
– Allies stage not sit-ins but lie-ins at key government/medical insurers offices to represent the predicament of the post-viral worldwide, with mattresses blocking office workers’ movements as they block ours.
– Allies obstruct entrances with placards bearing a giant PAUSE sign (II), symbolising solidarity with all those invisible individuals with Invisible Illness whose lives are permanently on hold due to the inability of authorities to even imagine their plight.
– In the midst of the AIDS pandemic, ACT UP activists chose the motto Silence = Death but for us Silence = Living Death. Allies could march as a Zombie Army all wearing white with black mask-covered mouths to express how Longhaulers are silenced by a lack of energy to protest. Allies are The Living Dead Walking, holding up their phones with images of the housebound and bedridden loved ones they represent.

Over the course of this pandemic, as the rest of the world got a taste of our lifestyle, astonishing advances in empathy took place. Remote medical consultations, working arrangements, online education and entertainment opportunities denied to us for decades became available within weeks.

Real change is enabled when allies stand up for others’ rights: when white people take a knee alongside black people; when straight people vote for gay marriage; when cis people march for trans rights. Because none of us are free until we are all free; none of us have dignity until we all have dignity; none of us are safe until we are all safe.

Chronically ill people need healthy people to protest for them, because – as the pandemic has so brutally demonstrated – none of us are well until we are all well. Most other minorities are ‘born this way‘, but absolutely anyone can become chronically ill – overnight.

 

Sam Pearce is an Oxford graduate with a Masters in Diversity Studies from the University of Cape Town, and a PhD in Persistence from the School of Chronic Illness: Acute 1992-93, Severe 1994-5, Moderate 1996-98, Mild 1999-2011, Moderate 2012-2017, Severe/Moderate 2018-20.

* Chronically ill people who reject their condition being dismissed by medical authorities as caused by anxiety or depression must nevertheless strive to stand in solidarity with those incapacitated by mental health issues. No disabling condition should carry a stigma. All of us have a right to be respected and live the fullest lives possible within our limitations.

** apart from speaking up for other silently suffering creatures or Mother Nature herself of course…

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Egypt 7: MCV Luxor – Magic Eyes

The Temple of Karnak is stupidly huge. Approximately 30 Pharoahs contributed towards the building and it seems to have been built on the ‘more is more’ principle. The site is host to four sacred precincts, and construction was underway from the Middle Kingdom, around 2000-1700BCE, to the Ptolemaic period (305 – 30BCE) although most extant buildings date from the New Kingdom (from around 1550BCE), the peak of Egypt’s power. In this Ramesside period, Egypt attained its greatest extent, conquering new territories north into Syria and south into Nubia.

Even the model of the Karnak temple complex was tiring for me to walk around!

Sampsons ready to dive in…

down the avenue of…

ram-headed sphinxes protecting Ramses III between their lion paws…

I can’t tell you how excited I was, all energy saved up and ready to go!

The avenue of Sphinxes extends for about 2700m from the Temple of Karnak to the Temple of Luxor – it was rediscovered in 1949 and excavations are still underway. The female Pharoah Hatshepsut from the 18th Dynasty was the first to build this processional road, with sphinxes in her own likeness. But they’ve been reworked and repositioned many times by later kings.

During the Beautiful Feast of Opet the statues of the deities of the Theban TriadAmun, Mut and their child Khonsu — were escorted in a joyous procession in a sacred barque down the avenue of sphinxes that connect the two temples, stopping at specially constructed shrines filled with offerings en route. The highlight of the ritual was the meeting of Amun-Ra of Karnak with the Amun of Luxor. Rebirth was a strong theme of Opet and there was usually a re-coronation ceremony of the Pharaoh confirming his kingship. At the end of the ceremonies in the Luxor Temple, the gods’ barque and the royal barque would journey by boat back to Karnak.

The West entrance

Greeting Ramses II

also guarding Ramses III

Dude

surrounded by stories

Of four main temple enclosures, only one, the Precinct of Amun-Ra, the chief deity of Thebes, is open to the public. You walk into the Hypostyle Hall, the largest religious enclosure in the world: an area of 5,000 m2 (50,000 square feet) with 134 massive papyrus-flower-shaped columns arranged in 16 rows. 122 of these columns are 10 meters tall, and the other 12 are 21 meters tall with a diameter of over three meters.

‘Massive’ has never meant so much

the crowns…

the architraves…

the detail…

the girth…

the amount of tourists

The architrave or lintel of each column alone weighs 70 tons (that’s 7 Big Green Trucks!) It’s still a mystery exactly how they were lifted up there. If I remember rightly, toppling a lump of rock off the top of one of them featured as a murder attempt in the 1978 film version of Agatha Christie’s Death on the Nile.

‘Huge’ appears an inadequate adjective

and every inch of every one

is decorated differently

Mammoth in design

and exquisite in execution

to the tiniest detail

although the hieroglyphs on sandstone were wearing away

So much remains – shoo

Obelisks abound

The pair erected by Hapshetsup

were, at the time,

the tallest in the world

the detail was breath-taking

I read somewhere these are all the names of one god

I loved how the faded remainders of Ancient Egypt’s favourite paint colours echoed those still preferred by contemporary tractor drivers.

Was it a coincidence that the same colours

of blue,

red, orange

and sunshine yellow

were well represented in more protected nooks

under the starry ‘skies of heaven’ within the temple walls?

I found the face of this statue of Tutunkhamun so beautiful it took my breath away. A group of Chinese tourists were surveying it next to me; all I could pick up from their rapid chat was “Wah wah wah Michael Jackson wah wah”. You agree?

Just look at him

The too beautiful boy king/of pop        (before the nose job)

The kids were feeling the force of royalty on all sides

and the achievement of the slaves who built the monuments in its honour to last

– with an insane amount of detail

It went on

and on

and on

with more bewitching glimpses of  unexpected beauty around every corner

– wild

A chubby tour guide – another in a long line of persistently space-invading Egyptian men I haven’t chosen to focus on in this blog – offered to ‘take us for free’ but we firmly and repeatedly declined as we were wanting to go at our own pace (i.e. very slowly with lots of rest stops for me en route). The best bit of today was singing along with Ruby to the tune of Goldfinger: “MANSSSPLAINER… He’s a man, the man with the small …”

Later on he ended up introducing us to the lovely Tracy and Brian from Diep River

The Sacred Lake was dug by Tuthmosis III (1473-1458 BCE) and used by priests for ritual washing and ritual navigation. It was also home to the sacred geese of Amun and a symbol of the primeval waters from which life arose in the Ancient Egyptians’ idea of creation.

The Sacred Lake

with Amenhotep III’s ‘lucky in love’ giant scarab beetle

Pharaoh as god with a firm grip on the ankh symbol of life

Sampson having an Ozymandias moment

As we wandered around, I was a little wistful I’d been unable to do my usual prep to get the most out of my visit, beyond reading the very basic guide book we had with us, but comforted myself that I would do the research afterwards, while writing it up for the blog. Yet here I am more than 2 years later still with not enough energy to do justice to this vast subject, just skimming the surface. This Hypostyle Hall video is about as much as I can cope with right now.

Sampsons getting a crash course in African history

I kept asking myself why on earth hadn’t we ever studied the Ancient Egyptians in school? On the ground, the sheer scale of their magnificent construction projects was so obviously superior to those of the Ancient Greeks or the Romans – not least because many were carried out centuries, even millennia, prior. How white Western education skews our understanding, insisting that ‘civilisation’ began with the Classical cultures of the Mediterranean, refusing to acknowledge the advent of writing or agriculture in Africa or the Middle/East and sidelining ruins and artefacts from Ancient Egypt to Mesopotamia, from the Indus Valley to Ancient China, from Norte Chico to Mesoamerica. Not to mention ignoring the vast treasures of collective wisdom across the globe from the First Nations of Canada to the indigenous peoples of Australia and the Amazon to the San. For five hundred years, colonising countries have been determinedly blind to the evidence of the intelligence and sophistication of the cultures of black/indigenous/people of colour throughout ancient history.

Loving the sights of this day

It was unforgettable for all of us

I amazed myself with how far I walked, but was bloody glad I’d cooked already. We found a quiet sidestreet to park overnight in, but when Sampson took Monte for a walk, some kids throwing stones at him progressed to chunks of brick being chucked at the truck by teens driving by on scooters.

How could you do that to this little feller?

This caused my kids both alarm and upset, particularly as we couldn’t work out why they were doing it. We’d had no interaction with them so it couldn’t be personal. Was it due to hostility or boredom? Were they demonstrating resentment at us or what we represent: tourists or colonists? I wish I’d had the language capacity or energy to enquire. Security guards invited us to shelter in Karnak’s outer carpark, where a few stones were still thrown, but finally there was quiet.

PEM hit me hard the next day. The situation wasn’t helped by Ruby-grieving-anticipation insomnia. Thank goddess Rube decided against trying to see the Valley of Kings the day before she left. Instead we went on a supermarket hunt and by fluke arrived at the perfect place at the perfect time (empty during jumu’ah prayer at noon on Friday) after the Big Green Truck squeezed between cartfuls of tomatoes in a packed market and turned a corner to find a few hundred men praying in a shady street, the overflow from the mosque opposite, a magnificent sight of conscientious calm.

Backstreets of Luxor

blessed to find a supermarket round this corner

Sampson was somehow managing to blag his way round in Arabic solely via his knowledge of names of street food. The relish with which he would rattle off a sentence featuring a string of his favourites seemed to be enough to convince locals he was practically fluent: “Kofta, kebda, kushari, hawawshi, aseer assab – magnoun!” The three of them tucked into a veritable feast as I dug out the rice cakes…

Hawawshi (chicken, cheese and pepper stuffed rotis) with delicious kushari (a local version of spag-bol-cum-chilli-con-lentils)

It was now the third week of January, which in Cape Town means back to work for everyone after the long summer Xmas holiday. Ruby was about to start Grade 11 and said she didn’t want to fly out for Easter this year because she had too much studying to do and it would be too far for a short holiday.

Last night with all 4 of us in the truck

Not much room when both teens bigger than me now

A final helping of choc-dipped strawberries before she goes

Gang of annoying lads who pestered us relentlessly on Ruby’s last morning, so cocky at first but so lacking in self esteem, Mohamed (3rd from right) covered his broken teeth when I first asked for a photo, despite his lovely smile…

and then escorted us all the way to the airport!

A melancholy day for everyone

Though some handled it better than others

So we drove our daughter to Luxor airport for her four flights home with the long months until we would see each other again yawning cavernously before us. I waved and waved through the glass until I couldn’t see her anymore; only then I did I allow myself a little burst into held-back tears on son’s shoulder.

I think this is where my airport phobia started

Ruby survived a delay at Cairo and resultant tight transfer at Addis but had a panic attack on the plane to Jo’burg. Uneasily, I put it down to stress about the lonely exam-studded time ahead of her. We were very grateful to Uncle Pierrot for picking her up, and to Nana and Duke for whisking her away for weekends out of hostel in term 1.

* * *

It was quieter without the maelstrom of her moods; calmer, but sad. I comforted myself with reflecting on how fiercely we love each other – imagine if we were feeling glad she was gone. Zola and I had a motivating chat in preface to starting the school year, aiming to make the most of our freedom to do more of what we love while we can. For the first time since Ruby arrived in Cairo in early December, he came for a cuddle before bed. We were all missing her.

I also shared my 2018 New Year’s Resolution with my husband and son – “Take. My. Time.” meant determining for the first time ever:
1. to unapologetically take as much time as I need to do things in my compromised state. (Including unapologetically splitting infinitives.) But also
2. to not automatically sacrifice hours to planning and making meals, constantly putting the boys’ nourishment ahead of nurturing my reserves.
I needed to prioritise my needs for a few months until I could pull back to better health.

I read a fascinating piece in NYTimes by Reform Judaism’s first openly transgender rabbi Elliot Kukla reflecting that, despite his layered minority identity, it is his status as a chronic illness sufferer that has most made him feel like an outsider.

As Sampson felt that the Big Green Truck still wasn’t running right, the evening after Ruby left we drove to MCV Luxor and parked outside.

Just me and the boys again

MCV Luxor’s Mercedes garage

It may have been much smaller than Manufacturing Commercial Vehicles Cairo HQ but we were welcomed by an equally eager MCV team on Sunday (the Egyptian equivalent of Monday morning). Chief technician Mr Micheal (sic, pronounced Michelle) Melad gave Big Reg the once-over and was convinced that a new clutch was needed – a nightmare prospect in terms of both time and money in the same month we paid out Ruby’s annual school fees.

Although strictly we didn’t conk out anywhere, I counted this as breakdown number 17 because it did delay us. We were there a week.

To take the clutch out,

they first had to take out the gear box,

and two bolts to lift the transition to access it –

a HUGE and tricky job,

thank goodness labour was generously donated by MCV.

Blessings on Amir

Mamdour

and Mr Sami

for extricating this!

Once all that was out, the truck was unable to move. Unfortunately, due to the angle we were parked at, there was a freezing wind coming through the side door. Temperatures were dropping to 13˚C overnight, as it had been in Europe in November. Winter was catching us back up. We couldn’t understand how, despite it being this bloody cold, there were still so many flies?

Not to mention the mossies…

Yet here I am wearing every layer available.

Fly paper supplies were dwindling fast

Yuk

There was lots of admiring of dog before work commenced on Monday.

Monte keeping warm

in his cosy kid’s jumper

Has ever a puppy been more cosseted?

Monte was about 4 months’ old by now and Sampson was starting to train him in earnest. He was walking miles and miles with him every morning around the waste water recycling plant opposite. Every day he would pick up a few of these bizarre rocks he called ‘magic eyes’ – small smooth circular stones that looked like fossils of some sort. We have tried in vain to find out what on earth they are and where they come from; any feedback would be appreciated!

Sampson’s magic eye collection

a fascinating array of fossil-like stones

Any idea of their origins?

While Sampson was busy replacing indicator lights and swapping armrests on cab seats (so at last I had a way to wedge myself in), I was going through the Grade 8 books Ruby had delivered in preparation for Zola going back to school. The prep exhausted me so much, Zola had to cook. He washed up and cleaned the cooker as well. WHAT a star.

Zola got stuck into his washing backlog using his skateboard to transport water from the main building so we saved enough for drinking and cooking

Letting it all hang out

Apart from the skateboarding, his one-legged unicycling prowess – check the video – made him a legend among the mechanics. He’d come a long way since France!

Check the state of his sneakers

First day back, Zola and I did 5 subjects, and were very chuffed with ourselves. In the holidays I miss the deep chats schoolwork demands of my naturally reticent boy. Today’s English lesson involved looking at yourself through the eyes of others in the social media context of ‘Your Brand’. After a long talk I asked him to share 3 adjectives he would like other people to use to sum up his character. This is what he chose:
1. Mysterious
2. Interesting
3. Kind.

I love him.

Back to school

I finally reopened my Croatia blog. This first writing in weeks made me feel so happy. It felt like I was back – to me. We were getting back into the swing of being three. Sampson made us mash for tea. We started watching The Handmaid’s Tale. Before bed I played some Cranberries to Zola in honour of Dolores O’Riordan, who had died yesterday age 46. At 47, I felt so lucky to still be here hugging him.

During a visit to the truck, Mr Micheal and sales manager Mr Armia Albert explained that in Egypt long fingernails signify that they are ‘rich men’ – specifically not blue collar manual labourers. (I enjoyed this account clearing up exactly why and a couple of other local mysteries.)

Companionable chats in the truck

comparing their pinkie status symbols – Sampson definitely ranking lowest

We took to ending off the day with a once-round-the-block walk with Monte in the last warm hour between 3-4pm. One last circuit with Zola on his skateboard while revising French numerals, days and months – I was impressed he was spot on! He had to give his Dad a massage tonight. I was dreaming of having a bath in Epsom salts – my muscles were beginning to take strain in the cold.

Meanwhile Micheal had said there was “no clutch in Egypt” so we had put feelers out to source one from SA, but by some miracle he then found one in the next town. Sampson leapt in a van with hectic driver Romany who went 140kph the whole way while on his phone.

Driver Romany on right

triumphant return with new clutch

Boxfresh!

After the new clutch was installed, the first test drive was disappointing as the pedal was super hard. After the second, Sampson was getting depressed that the adjustments seemed not to be having any effect, it was still wayyyyy too tight. I on the other hand felt weirdly relaxed – I could do absolutely nothing about any of it, so just surrendered myself to fate.

Sampson seemed aggrieved that I wasn’t feeling as overwhelmed by the situation as he was. He didn’t understand that I simply couldn’t afford to waste energy stressing, so consciously wasn’t. Garage-bound is the only area of our life that he has to be in charge because my useful knowledge is zero. The rest of the time, he prefers to defer to me.

Clutch installation underway

The guys were not overly impressed with being offered rooibos for their teabreak

Real men need caffeine!

Sampson was thrilled to track down a new release bearing to free up the clutch action

I was wondering whether we could get our cab decked out as cosily as this one!

Eventually the truck was taken into workshop and parked over a work pit, even colder out of the sun. I made pancakes with stewed apples and raisins to keep us going through school. Inevitably progress was two steps forward, one back. Some days Zola was deliberately s-l-o-w and I has to steel myself to show patience. In the absence of a text book, I improvised a Life Orientation lesson about Future Zola. I surprised him by opining that his naturally “cool, but with air of effortlessly reassuring gravitas” demeanour is something he could develop. We watched videos of a young Barack Obama and noted how less confident he was speaking at Cambridge Public Library in 1995 compared to his Democratic Party Convention-slaying speech in 2004 – Zola was so inspired it was worth the chowing of data.

We were hoping to get away by the weekend, but on the third clutch test, the bolt snapped. Back to square one. The truck had to be towed out of the workshop at 6pm to allow us a day’s break in the fresh air.

Thank God for the weekend and a bit of peace

Lucky got more adventurous the longer we were there

and scared me to death threatening to disappear over the wall

S/he was teething – not a kitten anymore

Friday Night Treats and the last episode of The Handmaid’s Tale. It struck me that Africa has been Europe’s Handmaid  for centuries. I had cramp in my left leg before bed, and in the night an attack in my right leg woke me with staggering pain. But this was Monte’s first night outside alone in the tent, and overall I slept better knowing Sampson was inside all warm and toasty. He got two hours more sleep than normal and looked loads better not to mention calmer – I felt like I got my husband back!

Security guards Ahmed and Noor

On Saturday morning, hospitable security guards Ahmed and Noor offered to share their cottage khobz, cream cheese, lettuce and bean casserole breakfast, but I declined and pressed on with my T’ai Chi to warm up. I knew it was keeping me mobile in the absence of being able to build my strength through walking. I was suffering PEM from typing yesterday; the pain in my fingers and arms was dire. However, the sore vertebra of my upper spine between my shoulder blades that had been bruised during the Christmas tree concussion incident was slowly healing.

My wonderful son, after reading in bed for most of the morning, around periodic skateboard dashes, made The Most Delicious Dahl ever from just onions, garlic and red lentils. Our fresh food supplies were dwindling.

We had the last orange for breakfast, the last two tomatoes for lunch. For some reason, I was still not worrying about it until I absolutely had to – I’m grateful that illness has taught me how to do this. After Amir had been under the truck all morning, Micheal came and asked Sampson to test again and, by some miracle, the clutch action was suddenly easy – the smoothest ever!

Our friends at MCV Luxor l to r: Mr Shazli, Mr Gemy, Mahmoud, Shaim, Nazshe and Ahmed the driver

Plus Romany, David, Karam and Karoles

Our heroes

Dear Armia Albert bought us these choccie snacks as a parting gift

to make us feel like rich people!

Bless you Mr Micheal for your patience

and the MCV team for their support

We couldn’t have made it through Egypt without MCV

We shall never forget your kindness

We immediately set off into town to stock up.

Sadly couldn’t indulge in these

but loaded up with bags of this

While Sampson scoured the main street for the best fruit and veg, I sat on my bed in the back of the truck and spent a fascinating half hour watching a vendor at the dried goods store it was parked outside. I wasn’t strong enough to get out and look round, or even hold my arms up long enough to take a decent pic through the window, but here at least is a polished version of what I managed to type then:

The stall is packed to the rafters and spilling onto the street. Spices in all imaginable shades of desert are displayed in giant wooden or perspex square boxes around the walls, topped by jars of honey and packets of tea. Giant sacks of dates as high as a table sit out front, next to huge baskets of different grade hibiscus flowers or ‘karkadeh’ – the Arabic word for Senegal’s ‘bissap’. There are piles of peanuts and pumpkin seeds on the right; rice, pasta, pulses, chillies and peppercorns on the left.

Sampson perusing the treasure trove of dried goodies

The shopkeeper is less like a salesman and more like an orchestra conductor. His three sons are constantly moving around him, weighing and bagging and smiling, while he counts the notes. He has a word for everyone: a joke, a story, or a recommendation – “Try the dates… Try the nuts… Look at the tea!” He keeps the entertainment going while welcoming each new arrival with half a handful of spiced peanuts, rubbing the skins off between his palms before handing them to the entering guest. Everyone in there is nibbling and content.

Sons to the left, the maestro to the right

I watch a family – patriarch, wife and grown-up daughters – stocking up for three households. The whole shop is a rolling performance, a choreographed routine they all enjoy. They point, the shopkeeper enjoins the more expensive, the better, an addition. All the while he’s moving about so sprightly – on his feet 12 hours a day yet he’s got to be 60 at least.

Look at the tea! Piles of dried hibiscus flowers of different grades

He takes off his turban to cool down, then redoes it 5 minutes later, winding the white scarf expertly round his skull cap, flattening the pristine folds. As dusk falls and the call to prayer rings out, the shop gets busier and busier. A little gift for everyone, a little treat. A free pack of incense sticks to all the big lady spenders. This is his way, his success – it is fun to shop here, fun to banter, fun to be able to help yourself to a little nibble from the huge heap of peanuts with no fear of reprimand because here you are at home, so feel free! He knows anything he gives he will get back tenfold because you can’t but love him. It’s probably been done this way for thousands of years. So humanity-affirming.

So far from Pick’n’Pay

* * *

We headed to the nearest vet’s to get Lucky and Monte’s follow up rabies vaccinations and tick/worm meds. After a bumpy drive, my aching spine was so bad, I allowed myself to stop being me for a minute (ever-striving) and remember my NY Resolution; it made me cry and ask myself how Sampson would act if he had this pain. Immediately I gave in and lay down. Eventually he came and massaged my back so I could move.

We parked next to Animal Care Egypt, an extraordinarily heartwarming welfare centre.

Welcome to ACE!

ACE has a wonderful history: it was founded by Kim Taylor and her aunt Julie Wartenberg from UK, after they came on holiday to Luxor and saw the dire state of working animals in the streets. Though aimed originally at relieving the suffering of donkeys and horses, by now they were home to 30 cats and 13 dogs as well!

The remarkably dedicated and tenacious Kim Taylor

Julie and Kim first envisioned ACE as a place where people could come and give their animals the care they need for free:

washing facilities,

emergency vet care for wounds

caused while pulling tourists in calèches

or for burns like Angel’s

as well as farrier and dental services

ACE helped over 35000 animals in 2019. They also offer educational tours and classes to local schools:

Zakia Reskalah is in charge of the educational programme

teaching love and respect for animals

how to care for them and keep them healthy

how to nurture them

through long hard-working lives

In term time, ACE teaches 150 kids per week from local primary schools. They are already seeing an impact as longstanding beliefs such as ‘animals don’t feel pain’ are overturned and replaced with tender care and compassion.

Thanks to volunteer Sophie Bell, studying Equine Psychology at Nottingham Trent Uni, for answering our questions

Sampson fell in love with this feller

Dear Zakia and her husband George helped get us everything we needed (from gas refills and inner tubes to bags of dog food and a cat litter tray) as well as spoiling us with biscuits, toast and kebda not to mention putting our sheets in their washing machine, bless ’em.

A thousand thanks to George and Zakia Reskalah for their kindness

and especially the boys’ favourite biscuits!

ACE is celebrating 20 years of making a difference in July 2020 – why not join their patron, actor Martin Clunes, in supporting their work today? See their wonderful video on Angel’s Story page here.

Amen

* * *

Check out Africa Clockwise on Carte Blanche this Sunday 19th July 7pm MNet and DSTV!

Posted in 21 Egypt | Tagged , , , , , , | Leave a comment

Egypt 6: Luxor or In De-Nile…

On our journey up the west coast from 2013-16, I tried to weave context throughout my stories, to post my observations about the interesting people we met along the way against a backdrop of African history, to try and gain some perspective on their lives. Here on the east side through 2018, having relapsed in the European winter of 2017, I was no longer able to sustain much interaction with the world outside the truck. I also stopped typing notes, so I am working now from the scrawl in my diary, which was mostly documenting my struggle to survive.

(N.B. This is an almost unbearably bloated blog – I started writing Egypt up over 18 months ago and I’m afraid the pain of this long drawn out process is all too apparent. Please bear with me as I try and get back into my groove. Thanks to those who have stepped up to support me on Patreon; your belief that I can close the circle means more than I can say.)

When you get this chronically sick, you lose the capacity for the meta-narrative. The physical horrors of your daily life are so great, the emotional toll is too demanding. Just a harsh word from a loved one can sledgehammer you for 24 hours; so you can’t take on thinking too deeply about Brexit or Yemen or impending climate catastrophe, else you’ll end up sinking into the slough of despond.

You rather retreat to the company of fellow sufferers on Twitter, and prop each other up with sheer marvelling at surviving each day. You are like a band of traumatised refugees trudging the long lonely road together, struggling along with no end in sight, holding each other up with soothing lies:

“There’s still hope. Out there, there must be somebody in power who cares.”

“They’re coming to save us, to save the children. They might ignore us, but surely they can’t leave the children like this…”

* * *

On Jan 6th 2018 severe ME patient and advocate Anne Ortegren, of Sweden, chose euthanasia after 16 years of chronic illness and pain. Her suffering was beyond what most people can imagine. Like most people with ME she had lost her capacity for temperature regulation. But while I have drenching sweats whenever I get cold, her hyper-reactivity caused an immuno-allergic reaction that was next level: for ten years she suffered with constantly burning skin that couldn’t bear the touch of clothes or bed linen. Sheer unrelenting torture. This is the letter she left for us, as finely wrought as antique French iron gates, painstakingly forged in the fire of her experience.

* * *

On Jan 7th, the day we left Red Sea Diving Safari at Marsa Shagra, Sampson was fighting off a 24 hour bug that had him so sick he crawled back into bed in the tent after breakfast and slept till lunchtime. But back in the truck on Jan 8th he was up early, banging about and raring to go. I exploded – had he forgotten already what being dreadfully ill felt like for him yesterday morning? The way it is for me every morning? I had to spell it out: it’s like the worst hangover in the world plus the worst flu. So stop brutalising me with noise in the first hour I’m awake – carelessly banging the door, slamming the fridge, clattering crockery. It’s cruel! It hurts. It makes me want to throw up. And if you can’t grasp this, I’m going to have to live on my own.

I wasn’t proud of my outburst. My shouting woke the kids and used up most of my energy for the day. But if watching the M.E. movie Unrest had helped them both realise that this is real and happening to me, why can’t – or won’t – he? For me, losing 2 or 3 hours sleep due to the dog barking means taking 2 to 3 times longer to get up. And I was feeling way too dizzy to leave quickly – I had to work up the strength to do T’ai Chi to calm the vertigo down enough to enable me to sit up in the front.

The first ever Africa Clockwise Instagram post was taken that day: a beautiful empty shot of the desert just past Barramiya, perfect for the final cautionary frame of the Saving Water with the Sampsons video. I started Instagram as way of my people far away being able to keep up with glimpses of our daily reality despite me now being so behind in the blog.

Africa Clockwise first Instagram pic Jan 2018

In the middle of nowhere on the way to Edfu

Surrounded by desert

That day I had moments of appreciating the beauty of shadows cast by lone acacias amidst desert expanses of charcoal, red and gold; I felt extreme gratitude for exchanging the drudgery of routine at home for this experience. We even held hands across the cab for a moment. Sampson admitted that he was having nightmares post-Unrest, that, most unusually, he couldn’t describe. (Sigh. So he did feel something – just not for me.)

Trying to capture the beauty of a lone acacia from speeding truck 1

But the fallout from the vibration of driving was dire.

Lone acacia 2

I took a preventative Ibuprofen after lunch in an attempt to head off the worst of the inflammation, but still, when the engine stopped, I had to go lie on the bed for an hour till the world stopped spinning. Again it seemed just being in the cab while driving, despite being wedged in with a travel pillow, was giving me too much brain rattle to cope.

Lone acacia 3

My journal records I had a moment that evening when I felt my heart was not right, overly strained at rest: “I reckon that, when my time comes, it will be my heart. It’s comforting perhaps, that it should be quick, not long drawn out, but still a bit frightening. I would like to discuss it with my partner, but I can’t. I know it would frighten him too much. It’s like having three children to protect. I have to face this alone.”

Lone acacia 4

That night I cooked for stroppy teens and fell asleep exhausted at 9pm.
“But Monte’s so freaked out to be in a new place, his barking woke me three times before midnight. I was so so deeply asleep; it was sickening to be wrenched out of it. I told Mark I shouldn’t have to feel this level of pain (I normally sleep through the most intense period of PEM). I don’t want or need a guard dog and if it happens again, he must go out and sleep in the tent with him.

It did, he has, and now I’m too upset to sleep. He came in to get dog food and left without saying a word. It’s ridiculous what we have become. I hate it; hate he chose this, hate he refuses to acknowledge the impact of it.”

Lone acacias 5

I finally got to sleep about 3am and was woken at 6.40 by Monte barking again. Weak and dizzy as all hell, and now with a raging sore throat, I was scared to be feeling on such shaky ground. Only two sleeps out of Marsa Shagra and already I was back to this. I couldn’t get out of bed. Too cold, too wretched, I lay waiting for the spinning to ease while the kids got up.

I told Sampson I couldn’t carry on like this; a few more weeks or months, I could be back in a wheelchair or worse. There was no chance of me seeing Luxor properly in this state. Most of all, I was gutted that his decision to keep the dog was stealing my limited time with my daughter. I felt at a crisis.

Should I go back to Cape Town next week with Ruby for a couple of months to recover (or at least sleep) till Monte was over his puppydom? But I couldn’t leave Zola to homeschool himself, and we couldn’t afford to fly me back, let alone both of us, with Ruby’s school fees due – never mind the carbon footprint. I felt trapped in a vortex of circumstances beyond my control.

* * *

Lying on my bed in the back, I missed the transition from the desert into the Nile Valley, and felt cheated when Sampson told me about it. So after lunch, despite pain and dizziness, I strapped myself in the front. I didn’t dare take another Ibuprofen, as daily use would be far too much for my stomach.

Before Edfu

Outside was suddenly a different world: Upper Egypt is GREEN! It’s the agricultural heartland of the country, spreading out from the Nile, and its lushness has had a critical influence on the country’s history.

And – in a change from the cities and towns we had driven through from Alexandria to here – suddenly there were WOMEN, everywhere! Egyptian men were generally very bloody wearing: there were too many little boys throwing stones, mocking teens, lairy young men pulling all nighters or old men sat around in hookah cafes with their feet up on benches (while somebody else was cooking for them) – spoiled princes all. It was such a joy to see female people back on the streets. Walking in groups: shopping, trailing toddlers, coming from school.

After

Lower Egypt, with the cities of Cairo and Alexandria, is considered more affluent, more sophisticated. Urban middle-class Egyptian women tend to live life behind closed doors, confined to the house for the vast majority of their time. Upper Egypt might be more rural, more ‘common’, but it definitely felt more comfortable for us girls.

Egypt’s range of people was as varied as the country’s range of landscapes: from the modern sprawl of Cairo, to the empty desert of Marsa Alam, from the colourful coral reef of the Red Sea to the luminous fertile green of the Nile valley. As we sat in the truck on the side of road surveying the passersby – some dark skinned, some light brown, some very pale – Ruby said “Wow, people look so different. Just like South Africans”. Admiring a woman sporting a leopardskin coat, green patterned legwarmers, Nike trainers and a replica Louis Vuitton bag with chutzpah, I had to agree with her.

Generally, clothing in Upper Egypt was much more traditional than in the cities of Lower Egypt: men were wearing long charcoal grey or brown robes; older ones with white turbans; most with moustaches, on donkeys. People were much friendlier, and often very excited to see us – there were hardly any tourists round here.

On the way into Edfu…

back in a built up area

things got a bit cramped…

with low hanging wires presenting a particular challenge

Edfu was crowded, and it got a bit scary trying to find our way to the Temple of Horus with the truck squeezing through narrow roads in the centre. At one point a whole posse of guys helped Big Reg turn around under low wires; a kid leapt up onto the front bonnet, pushed a broom underneath them, lifted it and scampered along the length of the roof! So it was especially surprising when we finally found the Temple and saw the size of the carpark:

Beyond vast! And empty!!

The Temple of Edfu was so much more… everything than I could have remotely anticipated. More HUGE. More architecturally impressive. More modern-looking. Despite being built between 237 and 57BC by Ptolemaic kings during the Greco-Roman era.

The temple was dedicated to the falcon-headed Horus, god of the sky and of kingship, son of Isis and Osiris. It is covered in hieroglyphics relating the age old conflict between Horus and his fratricidal uncle Seth, god of the desert.

It’s the largest temple dedicated to Horus and Hathor. Each year, a statue of Hathor travelled south from her temple at Dendera to visit Horus at Edfu; this event marking their sacred marriage was the occasion of a great festival and pilgrimage.

Over centuries, the temple became buried in 12m of desert sand and Nile silt. Locals even build homes on top of it. Only in 1860 did the famous French Egyptologist Auguste Mariette begin to uncover it. Wikipedia describes the temple as “one of the best preserved shrines in Egypt”.

Welcome to the Temple of Edfu. Be prepared to have your mind blown.

I was not remotely prepared – for either the sheer scale…

or the magnificence

or the artistry

or the detail

or the delicacy

Words failed me then

and they fail me now

So I’m going to let the beauty of the Temple of Edfu

speak for itself

It was so spectacular, from a distance

or close-up

Just imagine what it must have looked like as originally painted

with each enormous column

crowned with a unique design

in different colours

Shoo

There were still traces of turquoise and ochre in more sheltered corners

And apart from the pictures –

what if you could read the words?

What stories were they telling?

of feast and famine

of love and death

The combination was enthralling

My arms were getting so tired I vowed only to take pics of things that really delighted me

There were still too many

and more

The temple fell into disuse following the banning of non-Christian worship across the Roman Empire in 391. We could see damage to reliefs done by Christians; the blackened ceiling of the hypostyle hall was a result of arson attempting to destroy religious imagery considered ‘pagan’. Some figures on the outside had the surfaces of their faces, arms and legs chipped away:

Ruby checking out the vandalism

A guide explained it was the fault of the “Romanin” – Romans conscious of the ‘sacrilege’ of the art felt no qualms about stealing the gold leaf. And then there were the more modern graffiti artists:

Boys will be… inferior craftsmen determined to leave their mark no matter how shameful

Sigh… so embarrassingly inadequate

in comparison to such grandeur

From macro – the barque sanctuary in the centre

to micro – detail on the arch behind

Exquisite

Referencing my obsessive diary habit, Sampson joked that one of 9 side chambers (which was smaller than the others, with no figures of gods pictured) had hieroglyphics so densely packed, it should be named “the Sam Pearce room”.

Please step into the room of my mind

Yep

Just check the scale of this again – even round the back every inch is covered

We were all gobsmacked

by the grace of Horus and his consorts

What a blessed day in our lives

As we exited the temple in the perfect golden light of afternoon, I felt utterly overwhelmed. Humbled and enthralled in equal measure. Full of gratitude for this astounding day in my life and appreciation for achievements of our Hellenic/Ancient Egyptian/African ancestors which have endured 2200 years. All hail the Ptolemies!

Check this Temple of Edfu reconstruction video showing how it might have looked to contemporaries.

Fascinatingly, an industrial family in Leeds, UK, were inspired to build the Temple Works flax mill in Holbeck in 1840 with columns in the same style as the courtyard of the Temple in Edfu. Their building did not endure as well as the original –  a pillar in the façade collapsed in 2008! Ambitious renovations are underway.

* * *

Walking around the temple for just over an hour hadn’t made my Big-Wobbly-Head-Puppet dizziness any worse but inevitably I was shattered and knew I was going to pay. I’d planned ahead and cooked in advance so Ruby only had to reheat our leftover supper as risotto.

Thank goodness because it took us a while to find a place to pull off the road and it was nearly dark already

We drove a little way out of town looking for quiet place to sleep and pulled off onto a side road next to an irrigation canal among sugar cane detritus. Sampson set the tent up far away to ensure I had a quiet night to recover. I felt bad for him because it was shockingly cold: I was using two sleeping bags and even Ruby requested the pink fleecy blanket. (We were still very much in the northern hemisphere at this point, so despite the sunny days, January was deepest winter with overnight single digit lows.)

We’d seen some very narrow gauge tracks nearby and when Hub said “What’s that?” I replied without thinking, as a bit of a joke, “It’s the sugarcane train!” Still, when the very thing came clattering right past the truck just before 9pm Sampson sent me a shocked text message – he’d been worried it would blow the tent over!

Pics taken the following day

showed the train carried substantial amounts

and explained why it was so loud!

At 3.50am, a group of men with torches came back pushing a couple of empty carriages along the tracks and started loading cane. What a time to start work. But I’d slept solidly in between – a miracle. I felt so much better after a chunk of uninterrupted sleep, it was a different world. Pain and dizziness were so diminished, I was able to doze on till 7.30 and got up in glorious golden light when the train carts were nearly full.

The gratitude I felt for not feeling utterly wretched was as wide as the sky.

First view through the window at dawn of the men we’d heard hard at work in the dark for a few hours already

Our quiet spot turned out to be a busy junction!

The winter morning was so beautiful…

(as Sampson stretched and I did T’ai Chi next to the canal much to the amazement of small boys just out of picture)

it made pain more bearable

– as did the welcome – a local gifted the kids some fresh sugar cane for snacking

so Sampson showed some fun tricks in return.

Strawbs are still my best memory of Egypt

After another fab breakfast, I strapped myself in for the drive alongside the Nile on the ‘Road of a Thousand Speedbumps’: Sampson had to brake every 100m all the way up the west bank to Esna. It was exhausting and I was frustrated with my constantly blurry photos. I missed some classic pics: today, an embroidered Rikki tuktuk taxi motoring along with 2 giant cabbages bouncing on the roof; yesterday, a colourful calèche or hantour, set against our first glimpse of the Nile. My reactions were too slow to catch them, but I wrote it down to remember my delight.

I was loving the vibe of the little shops; preferred paint colours seemed to be lilac, dark pink and Cape-Town-municipality aqua.

In places, it was like the Bo-Kaap

but with more daring murals

and some beautiful inscriptions

On the other hand, tractors heaped with sugar cane were always painted in a combination of blue/red/orange/yellow, with hearts at the front. It was so difficult to take a decent pic of them while bumping along in the truck, but I tried:

We saw so many tractors

piled high with sugar cane

all painted in the same combination of colours

orange, yellow, blue and red.

I’d be fascinated to know why –

I got a bit obsessed

At every police road block, there were at least 5 guys, half with machine guns or rifles, all grinning, some mere lads, conscripts. They became noticeably friendlier as they became noticeably poorer. I was loving the feel of being back in Africa, small shops piled high, horse-and-carts, the aluminium-pots-and-pans man, the feeling of Less Stress.

There was such peace and contentment along this stretch

the feeling that things had been done this way for thousands of years…

and would perhaps continue to be so for thousands more

At Esna, we crossed a bridge back over the Nile and took a much bigger easier road to Luxor, though still scattered with speed bumps. We arrived at 3pm and were shocked to find that the Temple of Luxor was bang smack in the middle of town.

Oh my word – isn’t that the temple just beyond the traffic light?

Er – yes it is!!

Can we park here??

Surely not

We drove round the city centre twice trying to find parking.

By the time we entered…

the sun was going down at the end of this avenue of sphinxes

We had to be quick

but then again, maybe this was meant to be –

we didn’t have long before closing…

so I couldn’t get overtired

and the light was perfect

Go with the flow and be grateful

The Temple of Luxor was far less well preserved than Edfu, but much bigger and older, having been built around 1400BCE. Unlike other temples in the the ancient city of Thebes, this wasn’t dedicated to any particular god but to the rejuvenation of kingship itself – it is suspected that many of the pharaohs were crowned here.

There are chapels built by Amenhotep III, and Alexander the Great. Other parts of the temple were built by Tutankhamun and Ramesses II. During the Roman era, the temple and its surroundings were a legionary fortress and seat of government.

It was fascinating to read that originally there were two obelisks flanking the entrance that weren’t the same height but looked the same due to the illusionism employed in many Egyptian temples. I would have liked to test this theory, but one of the obelisks was transported to Paris in 1833 to decorate the Place de la Concorde – in exchange for a French mechanical clock which has never worked. ACT UP covered it with a giant pink condom for World AIDS Day in 1993. An exciting life for a hunk of rock.

The phallic references were all around…

There were soaring columns everywhere

with enormous crowns

These kings were stupidly huge

As you can tell by the size of the guide below

The colossal seated figures of the deified Ramesses II were cult statues of the king as embodiment of the royal Ka.

I was interested in the depiction of the team behind the throne

the slaves underneath doing the heavy lifting

and the representation of their proud features

Back amongst the huge columns…

the kids were pretty gobsmacked

we hadn’t been expecting such magnificence

There was a varied array of artisanal penises on display – an old man lurking in an inner chamber posing as de facto guide was pushing young women tourists into “touching them, as a prayer for strength”. I declined. I was quite strong enough already.

Alongside this impressive girth

there were more spindly specimens

popping up everywhere.

Most extraordinarily, there is an active Mosque of Abu Haggag within the temple grounds – built on the ruins of the ancient temple which was originally converted to be a church by the Romans in 395AD then to a mosque in 640 – resulting in more than 3400 years of continuous worship. This makes it the oldest religious building in the world.

Check out the Temple of Luxor reconstruction video.

The Mosque within

other evidence of Christian iconography

plastered over the ancient Egyptian

as well as some amazingly well preserved colour originals

It just went on… and on

More than 50000 stone fragments now stored in the Luxor Temple block yard were once part of the decorated walls of the Luxor and Karnak temples. They were reused as building materials in the medieval period. Many fragments were uncovered in the 1950s during excavations around the old Sphinx road.

The amount of ancient artefacts just lying around was overwhelming

so I just snapped my faves – this feller spoke to me

and this uraeus

and this Anubis

They were just a fraction of a fraction of the piles of priceless treasures sitting uncovered and neglected in the courtyard

There were far more tourists here, even this late in the day

and so much more to see, but we were feeling dazed already

We beg the kings’ pardon for managing only a cursory glimpse of their endeavours –

but we felt you

* * *

“I dreamt all four of us were sliding down grassy hills covered with shiny brown straw bits (like the dead leaves and sheaths of sugar cane too slippery to do T’ai Chi on yesterday) as if we were sledging. I was in the lead, managing to pull off increasingly difficult and dangerous turns, manoeuvring surprisingly well until, speeding up and beginning to get out of control, I suddenly hit a mogul and leapt almost vertical. I found myself going so high there was complete silence – – – then I was plummeting, coming down so fast I was convinced I could not but die on impact. I turned to see Ruby and Zola behind me looking fine, I knew they would cope, so I faced front, gripped Monte’s bed tighter (only then did it become apparent what I was sledding on) and prepared for a big shock impact… But I soft bounced like I was weightless, fell with no pain – and woke up.

My heart was racing so hard I thought I might die.”

Posted in 21 Egypt | Tagged , , , , , , , | 2 Comments

Please Help Me Come Full Circle

I’ve got very behind telling the second half of the story of our journey. In 2018, from Egypt to Kenya, I was mostly too ill to write. In 2019, from Tanzania, I was stronger, but got derailed by my daughter – or rather co-opted into her climate activism, as we organised 3 school strikes together as I moved through Malawi and Mozambique to Durban. In retrospect, it was a joy to be doing something so vital and constructive with her when I couldn’t face the lonely writing up  – the wounds were too fresh.

Family Sampson finally reunited in Cape Town, November 2019

We are blessed that COVID-19 did not strike last year when we were stranded in a garage without an engine, thousands of kilometres away from Ruby; that she has already completed her Matric; that Zola is an old hand at homeschooling himself; that Sampson has infinite jobs to do on the Big Green Truck to keep himself sane. Being together makes everything else bearable.

But back in Cape Town with winter descending, my health has deteriorated to such an extent I have reluctantly had to accept that even remote activism is no longer an option for me. What’s more, the raging pandemic of social injustice across the world right now – whether racial or environmental – is so overwhelming, I need to withdraw completely and shield to survive.

Lockdown has had almost zero impact on my lifestyle – as a ‘moderate’ ME sufferer, I am still 70% bed bound and rarely leave the house – the only difference is that my husband has no prospect of earning a living from stand-up comedy or motivational speaking until 2021 at the earliest.

So I am coming to you, loyal followers, to help me craft a work of art out of crawling a way through this. It’s over a year since I abandoned the chronicle of our east-side trek midway through Egypt. I propose to rejoin our journey on the road to Luxor, and fill in the gaps as soon as physically possible.

If you would like to join me on the last leg of this trek, please consider becoming a Patron of this blog from July 1st 2020, the anniversary of the day we set off 7 years ago. To support me to complete the Africa Clockwise story and turn it into a book, please click here. Every little helps.

Before I share the link to social media, I would appreciate regular readers’ feedback as to what rewards you would like to be offered at each tier of Patreon membership. As well as making it sustainable, your insights and your company along the way will help make the rest of this journey a joy.

Thank you so much for your time and consideration.

Love from us xxxx

If you can afford to contribute to feeding the most vulnerable in our Cape south peninsula community at this time:
Masi Creative Hub targeting children in Masiphumelele
Feed Our Valley supporting soup kitchens in Ocean View and Redhill
Ocean View CAN currently setting up a vital COVID Community Care Centre
Ukama Community Foundation feeding the hungry from Masi to Vrygrond

Posted in 0 South Africa | Tagged | Leave a comment

Joining the Dots… Reflections on Corona and Compassion

NB. This was written before news broke of the first death from COVID-19 in South Africa.

Public information poster in Monrovia in 2014

1. On Killer Viruses and Perspective

Unlike most South Africans, we’ve been here before.

The Ebola virus, which originated in the deep forests of Guinea in early 2014 and dawdled for a couple of months in the border regions of Liberia, arrived in the capital Monrovia at the same time as the Big Green Truck.

The kids and I left within 24 hours – not because we were scared, but because my brother paid for us to fly to my parents’ surprise 70th birthday party in UK. We thought we were going for 2 weeks and took only one bag between us.

We didn’t come back for 7 months.

To the Liberian population, Ebola seemed to come from nowhere and escalated so quickly, that despite an admirable ramp-up of public education, there was initially much distrust of health service providers as it seemed that people who got taken into quarantine in hospital died.

At first, my husband thought he would wait it out somewhere remote, and went surfing. A few weeks later, in a village on the coast, Sampson decided it was time to leave when a group of people were seen carrying their mother down the road after breaking her out of the local clinic. By then, most airlines had stopped flying, so his ticket out cost more than our three put together. The 9 days he spent shut inside the truck waiting to get on that flight were among the longest of my life.

We found out later that the woman survived, but several members of her family who tended her died.

Liberians showed a lot of grace under pressure. The brutalities of the civil wars 1989 -2003 were only a decade behind them. Many of the population displayed post-traumatic symptoms; they’d been through so much already – they didn’t panic easily.

But with Ebola, the survival rate was about 50/50. Mortality rates for COVID-19 are estimated at less than 1%. As Ruby said last week “You’re not going to bleed to death through your eyeballs people, so calm down and get a grip!”

Marooned in the UK over that winter, as the death toll across West Africa rose higher and higher to more than 11000, I remember initially being appalled that relatively little news coverage was being given to the serious threat of the epidemic, beyond salacious stories of gruesome deaths in the tabloids. As it wasn’t directly affecting British people, only Africans, it didn’t make the top 3 news items until the virus arrived in America.

There were many impacts born of ignorance: international conferences in South Africa were cancelled because foreigners perceived that there was a risk of contracting the virus on the continent, despite Jo’burg being several thousand kilometres further away from Liberia than London is!

At the start of the outbreak, Liberia had 1 doctor to every 100 000 people and Sierra Leone had 2 (compared to European average of 390) yet the international relief effort managed to contain the epidemic before it took down the global economy. Little credit was given at the time to the magnificent job the Nigerian health authorities did in shutting it down and limiting deaths within their vast population to 8; Senegal managed 0. If West Africa had not handled it, Ebola could have devastated the whole continent and been unleashed on the world.

This time the boot is on the other foot. Because of its dithering governments, Europe is now the epicentre of the epidemic and Africa is suspending flights and shutting its borders to travellers coming from there. Funny how those racist Chinese memes have merely transformed into tiktoks of plucky Italians singing and Spanish aerobics classes though.

Meanwhile the USA has 65000 cases while Mexico has less than 500; my favourite story today was of Mexicans blocking American travellers from crossing the border while “wearing face masks and holding signs saying ‘Stay at home’”.

Evidence showed that Ebola came from bats, and there have been two studies investigating whether this coronavirus jumped species when endangered wildlife/products were stored in unnaturally close proximity in Asian markets. This ‘Revenge of the Pangolin’ seems to indicate that Mother Nature is indeed sending humanity to our rooms to think long and hard about what we are doing.

2. On Surviving Social Distancing and Self-Isolation.

Unlike most people, I have been here before. I live here.

People like me with Myalgic Encephalomyelitis (literally ‘muscle and brain stem inflammation’ – a neurological condition estimated to affect up to 30 million people worldwide) spend our lives in isolation.

People with ME have to do social distancing to survive. Not so much to protect ourselves from germs (although we are immunocompromised) but to guard against energy-draining people and activities. We have to self-isolate to recharge our malfunctioning metabolic batteries. As a person with moderate ME, for every couple of hours you might see me outside, either walking or in a wheelchair, I currently spend 2-3 days at home recovering, mostly lying on my bed.

People with severe ME (about 25% of the global total, more than the population of Scotland) spend their entire lives in bed, unable even to sit up. Many of them don’t have enough energy to speak or swallow and have to be tube-fed. Interacting, even online, is often dangerously exhausting for them. Their existence consists of enduring constant pain in solitary confinement.

So for us, the irony of a sudden slew of articles like this is almost too much to bear. A panic over social isolation causing chronic inflammation? And mental health problems? And increased mortality rates? But the world’s press is only getting concerned about this now you healthy people have to do it?

Suddenly, people with ME are the experts. A three week lock down? Pah! We’ve been doing this for months, years, and in some cases, decades. Check out Josie’s hard-won advice or wise words from Anil, who’s had 2 visitors in the last 2 years.

My guidelines for dealing with this come from a blog I wrote in 2018, when I was far iller than I am now. I spent 85% of that year on my bed inside the truck, seeing very little of the countries in East Africa we were passing through:
“The survival tactics spoonies adopt are good advice for all humans: try not to look back, only forward. Don’t think about the time you’ve lost, just about making the most of the time you have. Don’t dwell on what you can’t do anymore; focus on making the most of what you can.”

Now a third of the global population is in lock-down, the big question for pwME (and other people with chronic fatigue, chronic pain or ASD) watching this on Twitter is: When the world gets a tiny taste of what it’s like to live like we do – will it start to view access for the invisibly ill in the same way it does access for the more ‘acceptably’ disabled? We don’t just need wheelchair ramps; to enable us to go out in the world we need sofas every 100m and Quiet Rooms in schools, hospitals and supermarkets to shelter from the hypersensory onslaught.

I celebrated my birthday earlier this month with a long awaited trip with my daughter to the largest contemporary African art museum in the world, the Zeitz MOCAA in Cape Town.  I had been looking forward to it for 3 years! It was a joy from start to finish, due entirely to the front-of-house staff who went out of their way to bend rules to accommodate my needs.

Not only did they reply promptly to assure me there was wheelchair access throughout, they arranged for me to enter through the back way to avoid crowds at the front desk. Not only did they allow me to wear sunglasses and ear defenders because I am hypersensitive to light and sound, an erudite staff member kindly gave me a quiet one-on-one introduction. Not only did they allow me to eat the safe food I brought with me, they arranged for us to sit in their restaurant with a superb view. Most crucial of all, a briefed staff member gave me leave to to lie down on a sofa outside the restaurant with my head covered just beforehand. This 15 minutes in the dark headed off the crash I had coming; the easing of pain extended my visit by an hour, enabling me to see another floor of exhibits after lunch.

This empathetic treatment gave me such dignity and hope. It also meant the three hour outing only took me a few days to recover from, rather than a few weeks.

A more compassionate world is possible.

P.S. To all the people who were too busy when I last asked: now you’ve got time on your hands, please watch Unrest, the movie about ME, now on Netflix!

3. A Message to Margaret

Last Sunday, the day before the City of Cape Town banned going to the beach, Sampson, Zola and I drove to Fish Hoek for breath of fresh air on that blustery autumn afternoon. I was shocked to see how many people had decided to do the same – Jager Walk was packed.

Sampson strode out ahead of us, while Zola supported me on a gentle stroll. As we passed a family of bathers on a bench, me on the inside, a woman behind us shouted to her teenage daughter, who was struggling out of a wetsuit just ahead of us, “Watch out Margaret – she’s touching his arm!”

We’d walked several steps further before the implications of this hit me. I was nearest her daughter, but the white woman had looked at me arm-in-arm with my son and decided that the teenage black boy was the site of risk? This virus is not yet prevalent in townships and the people who brought it into SA are exclusively privileged travellers who can afford to holiday in Europe, the vast majority of whom are white, and yet she decides he is the problem?

Shoo, it’s Columbus and the Taino, Cortes and the Aztecs, and the Dutch East India Company giving smallpox to the Khoi while making them wash their laundry all over again – ignorant European disease-carriers decimating the innocent indigenes!

By the time we returned, they’d gone and I didn’t get a chance to chat. So I’d just like to say “Watch out Margaret: it’s at times like this that people’s base prejudices are exposed. Educate yourself, stand up for science and never assume your elders are acting in your best interests.”

Zola and Margaret’s generation need to stick together.

4. GrAttitude

Today, 26th March, global deaths as a result of COVID-19 passed 20 000.

Before the first death in our country –

Before this pandemic inevitably explodes in the places in South Africa where overcrowding and lack of water on tap is standard and HIV and TB make millions more vulnerable –

Before the selfishness becomes apparent of those who, in this last week since the President closed the schools, insisted their domestics leave children unattended and come to work on crowded taxis just to do their ironing –

My overwhelming feeling right now is thankful: that corona happened this year not last year, when we were stranded without an engine in a garage in Malawi so far away from my daughter about to sit Matric. Hugely grateful that it’s happening on President Ramaphosa’s watch and not on Zuma’s – it’s been uplifting to see the former show some firm leadership at last.

To avoid despair, we have to choose to be positive – to employ both grit and gratitude. We have to choose to be proactive and create community networks to withstand the crisis, rejecting the instincts of those who barricade themselves behind a laager of loorolls. We have to choose to join the dots and learn the lessons.

It is high time we realised that we are all irredeemably connected:

If someone in remote Guinea is so desperate for protein that they are eating bats or if someone in rural China erroneously believes pangolin scales to have medicinal powers, all of us will suffer.

If privileged people continue to be wilfully blind to their role in perpetuating this inequality (there is no reason anyone on the planet should lack for food or education today) and their culpability for the consequences – of corona, of capitalism, of colonialism – all of us will suffer.

If we continue to ignore the fact that how we treat the most vulnerable in our society – the shack-dwellers, the refugees, the elderly, the chronically ill – is a litmus paper for our capacity to survive the crises that ongoing global heating and environmental emergency will continue to throw at us, all of us will suffer.

This month, our President has proved that, when the threat is perceived as great enough, he can take bold action to save lives and the economy. Imagine what might happen if he could show the same backbone and take immediate steps to free us of our fatal dependence on fossil fuels and Eskom?

Now renewable energy is cheaper than coal, he is perfectly positioned to push for a just transition. Using wind and solar to reboot our economy would ensure the resilience needed to sustain South Africa through the crises to come.

Contribute to the national Solidarity fund, or local initiatives Feed Our Valley and Masi Creative Hub

5. Top Tips for New Homeschoolers

As someone who planned to spend 2 years homeschooling but ended up doing 6 – and spent 2 full terms stranded in garages enclosed in a 3m2 space with a 15 year old last year – I offer the following advice to those feeling overwhelmed at the prospect of being stuck at home with their kids for a month or more:

  1. Draw up a calendar and put it on the wall where everyone can see when lessons are due to restart after the official holiday. Explain that the family will be following a routine, with school happening every day from 8am till lunchtime and they can only play/ watch TV/ go online after lessons are done.
  2. Start the day with exercise. (I found my son worked far more quickly and efficiently on days when he spent an hour surfing before school because he was more focused after letting off steam.) If you can’t get outside in a garden, do exercises indoors. Challenge youngsters to build up their ability to do press-ups/do the splits/hold a yoga pose/bounce a ball/juggle three with daily practice over the lock-down period and give them a sense of achievement. More ideas for preschoolers on Pick n Pay School Club.
  3. If your kids are in primary school, you just need to make sure they do some Maths and English every day. For the first 2 years of our trip, we would recite times tables on our daily walk and do spot quizzes. I abandoned this habit once they were able to answer “What’s 6 x 4? 3 x 12? 7 x 9?” quicker than I was. If your kids’ school or local education department isn’t providing materials, it’s possible to access lessons online (see below).
  4. If they’re too young to read alone, get them to read to you every day – anything that can hold their interest. If you haven’t got access to books, try a magazine, a website, or a cereal box. Read to them, every night, a story that can keep them riveted and carry you through these 3 weeks; or stream a free audiobook from Audible. The routine is comforting – to this day my kids doze off to Stephen Fry reading Harry Potter. Challenge your teens to read a chapter a day. Get them to write every day. Once a week a story, a diary entry, a letter to someone, a list of ambitions, a piece of research on something or someone that interests them. Practise giving a speech about it.
  5. Once you’ve done Maths and English, do some fun stuff. A cooking lesson is also a great opportunity to learn about measuring, ratios and temperature. Teach your kids how to sew on a button or darn a sock. Getting creative with pens, paint or plasticine can combat frustration and while away hours. If you don’t have access to expensive materials, make collages from cut up newspapers or leaves. Lego saved us on many an occasion. When was the last time you played a board game together? Cards, dominoes, Uno or dice games such as Yahtzee are all good for practising mental arithmetic. Challenge your family to an intergenerational singsong! If you don’t have instruments, make some shakers from plastic containers and rice, or have a DIY karaoke competition!
  6. If your kids are in high school, I hope they’ve been sent home with text books they can work through – the South African CAPS curriculum is easy to follow as each topic is clearly labelled e.g.“Term 2, week 3”. Once you’ve read through the text of the lesson together, they just need to be supervised to complete written exercises. The Western Cape Education Dept has made school closure resources available online and Paper Video has made access to their G8-12 video lessons free over the lock-down period, as has Siyavula Maths and Science and Advantage Learn Maths. Ukhozi FM is also offering Matric revision sessions daily from 9-10pm.
  7. If your kids (or you) are battling to accept your new role as Teacher, try thinking of it as homework extension – start by asking them what they might be struggling with at school, something they may have been reluctant to ask for help with in front of the whole class. They might appreciate you spending an hour helping them get to grips with telling the time or revising fractions. Even if you struggle yourself with algebra, they will learn from your willingness to tackle it together. If teens are still reluctant to study, ask for their help teaching Maths to younger ones – they love knowing better than you! But it also helps foster understanding and cooperation around the challenges you’re all facing.
  8. Reward them for good behaviour whenever possible – ignore the negative whenever you can, and focus on the positive to reinforce a constructive environment. Younger ones love receiving stickers and stars on their work, and even the stroppiest tween can’t resist glowing in response to an ‘Excellent work’ comment on a good essay. On your wall calendar, put a star every time they complete their daily 3-5 set lessons. Every five stars, reward them for their self-discipline: give them a treat or access to data or simply an hour alone with your undivided attention. Go on a virtual visit to a museum together!
  9. Keep a record. In my Teacher’s Book I wrote down every day what subjects each child had done, what pages completed. Through the roller coaster days ahead, that will help build routine and give you all a sense of achievement – bietjie bietjie maak baie.
  10. Don’t overburden yourself. You are not qualified to teach, so anything you do manage is a bonus. See these tips as guidelines not a straight-jacket. If you or your moody teen are not in the right frame of mind to study, don’t push it. Be kind to each other and go with the flow. Try and see this not as an obligation but as an opportunity you have been given to reconnect with your kids and see where they are. If I had not spent so much focussed time with my son, I would never have realised how dyslexic he was and how much he needed help. When in doubt, just give yourselves a hug.

I’ll be adding to this list as more info becomes available – feel free to chip in with your recommendations.

Homeschooling despite distractions, Ghana 2014

Ruby Sampson (Matric graduate with 3 distinctions, homeschooled from Grade 6 to Grade 9) is available for online tutoring – put your contact details in the comments if you would like her to help you inspire your youngsters to keep up with their schoolwork.

Dept of Health’s official COVID-19 news and resource portal sacoronavirus.co.za

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So Near And Yet…

Written mid-November 2019

We can’t deny it’s been a tough few months. We re-entered South Africa at the end of July and confidently expected to be back in Cape Town to support our daughter through her Prelims in late August – and definitely in time to accompany the African Climate Alliance to the Global Strike on 20th September.

Us lot, all optimistic on the coast in August

Well guess what? Late again Sampsons! Ruby’s doing Matric right now and the Big Green Truck is still not home.

After travelling through Swaziland in early August, we arrived at Mercedes Commercial NMI-DSM in Durban North for a roadworthy.

“It’ll only take a day” said Sampson

Famous last words…

They gave Big Reg the once over and said everything looked fine, they just wanted us to nip up to Pinetown to have an injector pump leak fixed. Bowling along up the hill, the power suddenly dropped: pop! The compression rings had gone again… Breakdown number 26.

Sampson was gutted. It was the third time this year. By this point, we’d already had the engine out in Tanzania and Malawi (twice) and spent 85 days in garages in 2019. We comforted ourselves by reflecting how lucky we were – we had been on our way to Lesotho, so it could have happened on the Sani Pass! But to breakdown just a few kilometres away from the biggest Mercedes truck garage in the southern hemisphere – that had to be a blessing.

Dealer Principal Robbie Van Der Merwe of Mercedes Commercial NMI-DSM listened kindly and put us in the capable hands of Service Managers Ashwin Dalthmum and Kisten Govender. Big Reg got cosy in a corner of their enormous carpark – there were more than 200 brand new and used trucks on sale, with around 50 vehicles being worked on daily, from very early morning till late late at night.

If you gotta break down, this is the best place to do it!

Big Reg’s berth in the vast Mercedes Commercial carpark

with a gaping hole where the engine should be

Dealer Principal Robbie Van Der Merwe

Super P.A. Maranise Abrahams

Service Manager Ashwin Dalthmum

We want to make special mention of the patience of Workshop Manager Terence Nayager, the long-suffering man in the middle, constantly juggling the competing needs of his clients, his bosses and his mechanics. Profit margins are now so narrow, it can be cheaper for fleet owners battling to meet delivery deadlines to buy a new truck than spend 3 days fixing a broken one.

The man on the frontline: Terence Nayager smiling under pressure

This terrifying environmentally-threatening fact seems to be why there are so few remaining capable mechanics in Europe and South Africa – apprentices are mostly being trained to be ‘fitters’ now. Our experience shows that only in remote Africa is it financially viable to bother to mend broken trucks as old as ours. ‘Uptime’ is a major bonus feature of new Mercedes trucks – their latest model Arocs provides instant satellite notifications of any engine problem to the nearest service provider to ensure swiftest possible resolution and return to the road.

We were privileged to be invited to attend…

the launch of the new Arocs at NMI-DSM

Maretha Gerber, head of Mercedes Trucks South Africa, came from Jo’burg to MC the event

featuring the glamorous gals of the Durban branch: kind and capable Service Advisors Sabitha Haripersad, Ashleena Howathbehari and Alareece Gregory

In these circumstances, we were very lucky to be in a position to receive the advice of veteran expert Randy Krishna as well as the services of senior mechanic Sashen Chetty (around his long list of priority client jobs).

Sashen looking very serious

Sizwe keeping his sense of humour about the whole thing

Everything out once again…

the whole engine…

and Big Reg’s guts spilled out all over the workshop tables

To have driven more than 46000 km around the continent just to break down so spectacularly within sniffing distance of home seemed unnecessarily taxing at this point. But thanks to Mr Nizam Akoob, the owner of NMI-DSM, agreeing to sponsor the labour required, trusted partners of Mercedes in Durban were also willing to come on board.

In the end it took contributions from 10 different companies to get Big Reg back on the road, including: Alert Engine Parts, Dave Wesley and Son Engineering, CBS Clutch &Brake Systems, Mac’s Electrodiesel Services, Turbo Exchange, Cabris Driveline Technology, Diesel Electric Natal, Gabriel and Protea Truck and Bus Parts.

Pulling all this together was a mammoth undertaking – and Sampson has the high blood pressure to show for it. But it was also very humbling and inspiring to be witness to such an enormous demonstration of solidarity and support from Mercedes Commercial and our Durban sponsors who saw how far we’d come and wanted to help us make it home. It showed us that contemporary South Africa has managed to retain the traditional African spirit of compassionate assistance (a.k.a. ubuntu) while cultivating the kind of technological expertise usually only expected in Europe.

Mercedes leading by example in GIVING this season

Only the combined force of the Mercedes family of fundis were able to give us the insight we needed to work out why the same problem had kept happening to the Big Green Truck all through 2019.

Expert engineer Craig Wesley (from Dave Wesley and Son) concluded that our problem was a combination of fuel dilution and carbon. When you use waste vegetable oil as fuel, carbon build-up in the engine is accelerated and moves into the engine oil. On top of this, fuel dilution – which happens to all engines after some time – was caused by cooking oil leaking past the pistons. He thought these combined contaminants were causing substandard lubrication, poor performance and eventually sludging of the engine oil.

That had happened to us for the first time in Cameroon, after doing 10 000 km up the west coast of the continent from SA. But on the east side, since our oil change at MCV in Egypt, we only managed 3000 km across Sudan and Ethiopia before sludging to a standstill at the Kenyan border – probably because Big Reg had spent a hectic couple of months running under harsh conditions through hot deserts and over cold mountains.

Craig said that, due to the carbon build up, the injector nozzles weren’t giving a good spray pattern. They had already been compromised by using WVO in too-cold conditions through Europe and northern Egypt, resulting in low power. Straining the engine up and down the mountains of Ethiopia at high altitude, low revs combined with contaminants in the engine oil had led to sludging and repeated overheating – hence Sampson’s ‘McGiver fix’ with a hosepipe spraying cooling water onto the radiator.

The only way to avoid this problem while using WVO as fuel, Craig advised, is more regular changes of both engine oil and injector nozzles in future.

Finally the constant overheating had stressed the block too far – Craig assumed it had probably hairline-cracked back then, four countries ago, even though he was the first to spot it. So even though we replaced the pistons three times, they were just going to keep popping due to pressure from the distortion of the block. Phew.

So now, for the third time this year, we had a whole engine to rebuild. The good news was that we knew what was happening and could nail the problem this time. But the bad news was that we’d run ourselves down to the wire paying for imported parts in Tanzania, and again in Malawi. How on earth were we going to cover the cost?

I didn’t think we were going to make it home until Faraad Ebrahim of Durban central branch of Alert Engine Parts came on board at the end of August and persuaded the owners of four other branches to come together to sponsor the shared cost of the block (R15 000). I would sincerely like to thank him for taking the lead – without Faraad getting the ball rolling, we would probably still be sitting in that corner of the carpark next to the eThekwini refuse trucks…

A thousand thanks to the team at Alert, the first to show faith:

(l to r) Faraad Ebrahim of Durban central, Bala Naidoo of Pinetown, Pieter Grace of Pietermaritzburg, Mehboob Bux of Briandene, Len Pillay and Craig Tantum of Durban with Sampson

Our hero in Durban: Craig Wesley from Dave Wesley and Son

Our hero Craig Wesley skimmed the head and exhaust manifold, engineered the parts, then handled the sub-assembly of the whole engine (plus the alternator bracket).

Justin Minietti of CBS was appalled at the state of Big Reg’s mashed radiator…

and generously provided us with a splendid new one

while Darren Potgieter of Cabris Driveline Technology serviced the gearbox

Macs Electrodiesel got cracking replacing nozzles in the injectors, new seals in injection pump, checking alternators and servicing the starter motor…

We’re so grateful to the team of Rakesh Singh, Lushen Singh, Michael Cameron, Duran Moodley and boss Chris le Roux.

At Turbo Exchange, Roland Watkins checked the turbo, fixed the damaged impellers, and gave it a full service so Big Reg basically has a new turbo kit inside…

They also gave us a spare turbo for the road and an in-line fuel filter and water trap to help prevent damage to injection pump in future

Alongside the huge contributions of Alert, CBS, and Turbo Exchange, the MOTUS group of companies also persuaded Roger Wilkerson at Gabriel to donate new shocks.

Before… the shocks last changed in Dakar, Senegal

After: sexy new shocks from Gabriel, as modelled by Bradley Padayachee

At the last minute, Diesel Electric Natal sponsored a new lift pump and got it sent down from Jo’burg when the old one’s aluminum housing cracked during fitment just before the test drive.

But it was Protea Truck and Bus Parts who truly saved the day:

– not only did they give us the full kit of pistons, rings and gaskets that we’d bought three times before…

but they also provided Big Reg with new fuel filters, oil filters, fan belts, power steering belt…

injector pipes, turbo gaskets, water pump, crank pulley…

a full gasket kit, 15L of coolant, an oil pump and new headlights!

Three cheers for Protea! Without them filling in all these gaps, we would never have got back on the road.

Heartfelt thanks to the three partners: Dayalan Govender (here with Sampson and I)…

Scully Padayachee (pictured) and Kevin Naidoo for contributing around R20 000 worth of parts – we will be forever grateful.

And thanks to our friend and passionate petrol-head Denzil for inspiring their involvement

Another new friend, Philip Symons, founder of eWasha washbay water recycling, spent an afternoon explaining to us the clever process by which the NMI group has recycled 49 million litres of carwash water in the last 8 years, saving the company over R2million!

eWasha washbay water recycling is saving precious resources for the NMI-DSM group

eWasha also recycles washbay water at Bidvest Car Rental – and thanks to Philip putting in a good word for us, Bidvest lent Sampson a bakkie for a couple of weeks to go get our groceries while Big Reg was stranded without an engine.

Thanks to Bidvest Car Rental KZN regional ops manager James Fawcett and Claire Taylor

Thanks also to Ryan Taylor of Southern Natal Lubricants for giving us 80L Castrol – enough for 3 oil changes so we don’t get in this mess again anytime soon!

And thanks to workaholics Kevin and Roberto…

of Trailer Sol who came at the weekend to sort out the wiring on our Victron solar system battery charger

And thanks to Pravin Ramlal of IComputing Solutions Apple Store Durban for fixing Sampson’s Mac Book Pro when the motherboard blew up and mouse pad died

Plus Seaport Supply who gave us a water pump when our kitchen tap failed. Seriously, it seemed that everything that could break was breaking. Some days it felt like this relentless onslaught of small setbacks might break our spirit too.

So we were lucky to be surrounded by the Mercedes Commercial team, who just kept going no matter what challenges were thrown at them, especially after Sampson’s lunchtime show sharing stories of our journey round Africa so far:

We were so fortunate to be taken in by the NMI-DSM Mercedes Commercial family

who always appreciate a laugh, no matter the stress levels

and were so very patient with us Time-Wasters –  not Eco-Wasters!

Durban was indeed the warmest place to be both in season and in spirit.

Thanks also to Angie and Dave, new friends we met in Mozambique, who gave Zola and I shelter for a week to save me from the worst of the workshop fumes, and to Rogers who ran Sampson around from the cheapest hardware stores to the best curry houses!

And our other NMI-DSM friends: Uzair Mohamed who brought us padkos,

Service Advisor/comedian-in-the-making Zunaid Manuel…

who made the BEST melktart!

Sis Lindiwe in the coffee shop

and Ram Latchu, the kindest man on site, who cheered us with his beaming positivity every single day!

Towards the end of September, the engine was back in, but the ‘old-school’ clutch and accelerator linkage were causing major headaches. Sampson eventually modified the new clutch himself with an extended rod engineered by Craig Wesley, a custom-fix that Terence called ‘genius’. But more hiccups kept holding us up…

At this point a very dear friend of mine – who’d suffered a severe stroke at the beginning of July, followed by 8 weeks in a coma, a miraculous resurfacing then several traumatic brain-draining procedures – passed away in Cape Town. Marooned at Mercedes Commercial, we’d missed the Global Strike and all of Ruby’s September school holiday; I couldn’t bear missing paying my respects to Sue as well. With less than 12 hours’ notice, I booked Zola and I on a flight back for her memorial service. A day later, on Oct 1st, he started back at school.

I’d like to apologise to Mercedes Commercial NMI-DSM and all their partners for the delay in publishing this acknowledgement of their support and generosity. Through October and November, grief and single parenting took a heavy toll on my M.E. body, which was already struggling after spending half the year battling the fumes, noise and stress of living in garages with a teenaged boy doing school in a 3m² space. Hats off to Zola for surviving it.

A thousand thanks to Terence, Kisten and Ashwin for putting up with us for over two months!

Big Reg broke down on August 12th and only left Mercedes Commercial NMI-DSM on October 18th, having spent 61 days there – that’s a total of 146 days in garages in 2019. Mark and Mojo are slowly making their way home…

Missing these two fellers

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DIY Water Traction Therapy or How I Hauled My Way Back from Severe ME

This one’s for my #pwME/POTS/EDS/Fibro/Lyme/MCAS/MCS and all the other ‘MUS’

A year ago, for Severe ME Day, I wrote about my apparently inexorable descent back to the severely disabled state I was in 25 years previously as a consequence of a major relapse and long term degeneration. I’m writing this update now in the wake of Jeff Woods’ and Jen Brea’s testimonies, in case anything happens to me before I can complete the detailed account of my recovery back to ‘moderate’. I’m 18 months behind in my travel blog and wanted this evidence in the public domain for people with ME and suspected cranio-cervical instablity (CCI) as soon as possible.

I have written before about my fairly typical viral onset aged 22, how I went from acute to mostly bed- or house-bound through my mid twenties. What is not typical is that cold weather seemed to exacerbate all my symptoms, so I emigrated from UK to South Africa in 1994. Thanks to the climate and a Taiwanese doctor practising Chinese acupuncture, I slowly improved to the point where, from the age of 28, I was able to work and I managed to maintain at ‘mild’ through my thirties.

But when, approaching 40, I felt my stamina deteriorating again, I knew I couldn’t sustain even my work-from-home job. As neither my energy or the planet’s is renewable, my husband and I came up with a cunning plan to survive. In 2013, having spent 3 years converting an ex-army truck to run on recycled waste vegetable oil, our family rented out our house and left Cape Town to travel Africa Clockwise.

Family Sampson just before leaving South Africa in 2013

That first year travelling up the west coast of the continent, I felt better living at my own pace: homeschooling the kids, with no need to battle deadlines, traffic or stress, eating when hungry, lying down when tired, gifting myself early nights and gentle days. I had an epiphany when I got malaria and typhoid at the same time and I realised that ‘severe’ ME in my 20s had been significantly worse on a daily basis. I had been more ill than I’d ever realised; so that meant I was stronger than I knew.

In Cote d’Ivoire in 2014, I had a stupid little accident. Starting up the Big Green Truck, my husband pulled away and hit a pothole just as I bent over to lock down the fridge: the jolt smashed my head against the wooden side of the bed. The concussion took a week to subside but it took a year for my neck and back to come right – I eventually got some physio when we evacuated from Liberia. The Ebola pandemic forced us to remain in the UK over a winter (in a bedroom with mould up the wall); this precipitated my worse relapse in 20 years and scarily undermined my baseline.

We returned to the truck in 2015 and made it up the west coast to Morocco in 2016. As it’s currently inadvisable to drive through Libya, we were obliged to travel across Europe. A breakdown in France in 2017 had us stuck from July until September looking for parts, so we ended up travelling down the Adriatic coast in early winter. Temperatures were far too cold for me to cope and my capacity started plummeting, about 10% for every degree below 20˚C. We managed to get the truck back from Greece to Egypt by November, but in December I had a disastrous fluke accident.

The base of our mini-Christmas tree – a lump of plastic weighing perhaps half a kilo – fell out of a cupboard directly on top of my head, giving me another concussion. It wasn’t as bad as the 2014 neck injury, but the consequences were far worse.

The culprit

I had constant nausea, a feeling like I had a Giant Wobbly Puppet Head and a racing heart whenever I stood up. These debilitating POTS symptoms didn’t improve with rest. All my ME symptoms worsened dramatically; I was perennially exhausted, battling relentless insomnia and adrenaline surges all through the night, and an inability to cognitively process during the day. Antibiotics for typhoid twice in three months through the too-hot deserts of Sudan and too-cold mountains of Ethiopia didn’t help my recovery. Neither did my ongoing peri-menopause.

But the big shock was that, even when we reached the kinder climate of Kenya, I didn’t get my strength back. In the warm, I was expecting to start feeling stronger within a few months, but I just wasn’t coming round. Worse was my increasingly extreme reaction to the vibration of driving – I stopped being able to travel in the front seat and was confined to my bed in the back of the truck with no view.

How I travelled through the majority of 2018 and 2019 – on my bed in the back

My complaints about ‘jangly head syndrome’ – a feeling that someone had taken me by the neck and shaken me violently, triggering an avalanche of symptoms – led to my husband trawling all the pharmacies in Mombasa for cervical collars before he found one firm enough to give me some relief: the Philadelphia model.

Remedial action 1: cervical collar

But the constant POTS and PEM got so bad, we had to abandon plans to travel through Uganda, Rwanda and Burundi because it was taking me 3 days to recover from the vibration of driving just one hour while lying down in the back. We rather spent another 3 months more or less stationary on the balmy Kenyan coastline trying to stabilise my symptoms. Progress was painfully slow, but I eventually improved to the extent that I could walk 100m on the beach every two or three days; that’s when I wrote last August’s blog: ME Too or Why I Am No Longer NOT Talking to Doctors About Chronic Illness.

How I spent most of 2018: on my bed with cat

Last November, thanks to Jen Brea publicising her discovery of it, I read Jeff’s Mechanical Basis for ME website. I hadn’t connected the severity of my 2017 relapse with head injury until then – I was used to blaming the cold. But this explanation made complete sense to me, mostly because I had discovered in Egypt that the only time I felt I could breathe properly was during my daily warm-up for T’ai Chi while doing a ‘downward facing dog’ stretch – with my head hanging free from my spine.

For five years, since the initial bash on the back of the head in Côte d’Ivoire, I have been using an empty cinnamon pot as a focussed massage tool. I gently roll to and fro on it as it’s exactly the right width to relieve the constant throbbing at the nape of my neck. I used to explain this two-pronged pain in shorthand to my kids by holding up two curved fingers, because it felt like I had a meat-hook lodged in the base of my skull.

My pot for POTS

Stationary on the coast of Tanzania over Christmas, reflecting on Jeff’s account, I thought back and remembered other possible contributing factors.

Aged 10, in the first week of my first term at secondary school, I was sitting outside one lunchtime with my back to the netball courts when a hockey ball sailed over the chicken wire fencing and landed on my head.

The shock was intense. I couldn’t work out what had just happened – I first thought someone had come up behind me and thumped me directly on top of the head with their closed fist and I had no idea why. It was very very sore and I felt very dizzy and unwell, but I was so embarrassed to be attracting attention, I didn’t tell a teacher and I don’t think I even mentioned it to my parents.

During the next two years, a netball at close range broke my nose and a wallop from a hockey stick resulted in stitches under my eyebrow. Presumably any or all of these minor head traumas could have acted as a mechanical trigger.

Alternatively, evidence suggests that the long term siege on the immune system that is chronic illness may have undermined my collagen production to the extent that, after 25 years with ME, I was vulnerable to CCI, either caused or exacerbated by a succession of minor head injuries and years on bouncy roads while travelling in the truck.

Armed with this new knowledge, and feeling like Wile E. Coyote, I set out to create the ‘ACME patent anti-CCI head stabiliser’ to keep my head as still as possible while driving:

Remedial action 2:

using two travel pillows and a recycled plastic oil container

Ta-daaa!

I was just about surviving an hour every other day on east African roads (far fewer potholes than west Africa) when one day in January this year, an empty tupperware rolled off my son’s bed in the nose cone above the passenger seat and hit the container cushioning my head. It was just a glancing blow, but at the worst possible angle. I knew immediately I was in big trouble.

My husband was doing a comedy show in Dar es Salaam and we’d been given a free suite in the hotel next door to the theatre for a few nights. I’d been looking forward to such rare luxury (a powershower… soft clean towels… privacy) but now I was feeling so grim, I couldn’t take advantage of it. The pain, vertigo and nausea were so extreme, the room was spinning, and I felt terribly ill. All I could do was lie in bed with my eyes shut; I couldn’t even watch the fancy flat screen TV with my son. I was devastated: had all the gains I’d clawed back so painstakingly slowly over the last 8 months been blown in one fell swoop?

Desperate times call for desperate measures. I decided I had nothing to lose and now was the time to test my hypothesis. On the third morning, my husband helped me to the hotel pool. He stood in a corner of the shallow end, and held my head from underneath as I floated on the surface. I braced myself with my hands against the sides of the pool and cycled away from him with my legs.

He couldn’t believe the force I put on his arms. But firmly and carefully I just did what I instinctively felt I needed to do to free my spine.

The effect was immediate – the first thing I noticed was that I could see more clearly. I hadn’t even realised my sight was compromised, but suddenly the sky was much more blue and everything was brighter and somehow more in focus. I stood up – and I could breathe. I hadn’t realised how much my oxygen intake been restricted. Suddenly I felt so much better. Not only had we corrected what the sharp tap on the head with the tupperware container had done, we seem to have remedied the klap from the Christmas tree catastrophe. I felt sturdier than I had done in over a year.

At the time, it seemed like a miracle. I did not write or even tweet about it until I was sure this wasn’t some flash in the pan. But it has proved to be sustainable improvement. What’s more, whenever I feel myself slipping, I find some water and do it again – and it works again. Not as dramatically as that first time, but consistently: like Jeff in a halo brace, I can see better; like Jen in traction, I can breathe better; overall I feel much better. Once the PEM from the exercise has subsided, I have less pain, less nausea, fewer symptoms.

Jennie Spotila’s dire warnings about the risks of cavalierly messing with your neck (including stroke) are completely valid, and I am not recommending this as a DIY course of action. I am just sharing my findings in case you have the good luck to find a professional physio brave enough to work with you to experiment. Out in east Africa, in the absence of anyone with the foggiest idea about chronic illness let alone any specialists in the field, I had no choice but to take matters into my own (husband’s) hands.

Please note: we only ever do this a) in water and b) after I’ve done half an hour of T’ai Chi to warm up all my muscles and joints and c) about once a month. I have to wear a wet suit if the water is below 25˚C. My husband’s fingers anchor either side of my skull at its base and he holds my head steady – he doesn’t pull. I aim to be as flat as possible and he may sit on the steps of the pool ladder to be at the right height. I can anchor myself best in a corner of a swimming pool, otherwise I have to brace against his legs.

Remedial action 3: DIY water traction in a tidal pool in Mozambique

He holds my head steady; I cycle away for 30 seconds…

then rest

I cycle away three times for about 30 seconds each. That’s enough. If I overdo it, this DIY traction can cause inflammation. But brainstem compression symptoms are always reduced. I always feel relief.

Physio Team Sampson. Don’t judge me on the homemade swimming cap – a terrible ear infection made me immune to embarrassment!

While stranded in garages in Malawi between March and May, away from the sea, I tried pulling my head down gently while leaning on a wide strap – but it felt more dangerous and was less effective. Far too hit and miss. Don’t risk it.

Six months later, I look back on 2018 like I had a bout with a life-threatening condition and survived. That’s what it felt like. I was nowhere near as drastic a case as Jeff or Jen (who suffered periodic paralysis and apnea) but their testimony made sense of what was happening to me, and has enabled me to help myself before I deteriorated to that stage. Perhaps this is a way to keep CCI at bay, I don’t yet know.

Whether this is a reprieve or just a respite, I am very grateful. I know it’s not over – I still have ‘moderate’ ME and I know that any day I could slip back to ‘severe’. But life at 50% bed bound is very different from 85%. Last year I was upright for about one hour per day in total and I was barely able to be in the world. This month I have sometimes had 3 or 4 upright hours in a day. I still have PEM, but after doing something consequential like handwashing or taking a 2km beach walk, not after having a shower; dizziness is occasional, not constant.

The bliss of being able to walk again

Best of all, my cognitive capacity has returned – I can think again, spell again, write and edit faster, contribute to society. (I’ve helped my teenage daughter and colleagues organise two climate strikes in Cape Town this year, managing logistics and PR from my bed). I no longer feel like a zombie. I no longer have massive adrenaline surges everytime I wake during the night. I no longer feel like I could have a heart attack at any time. I no longer feel that I am treading a fine line on the edge of existence. I’m back in the land of the living.

I’m back and I’m angry – that all this suffering of mine and so many millions of others may have been avoidable if evidence pointing to the neurological basis of our disease 30 years ago wasn’t ignored by psychiatrists trying to make a career for themselves. My lucky packet of domino triggers from viral infection to bacterial infection, concussion, mould, ciprofloxacin and sheer bloody female hormones has never been adequately explored. ‘Medically Unexplained Symptoms’ just means the numbers haven’t made it lucrative enough for Big Pharma to bother to devote the time and cash to investigating it properly yet.

They said MS was ‘all in the mind’ before the MRI was invented. They said stomach ulcers were stress-induced before the discovery of helicobacter pylori. Yet medical professionals are still gaslighting people with ME and insisting that we’re delusional when it seems many of us have been living with the symptoms of brainstem compression as a result of spinal damage for most of our lives.

News of Jen’s recovery from ME after surgery for CCI in May this year, coming so soon after the announcement of the discovery of the ‘nanoneedle’ biomarker by Prof Ron Davis in April, must have set off a panic amongst those whose vested interests lie in keeping chronic illnesses psychosomatic and thus Nightingales’ disability and insurance claims dismissable. Potential group action lawsuits for medical negligence damages are shaping up to surpass all previous records.

This almost guarantees a propaganda backlash bigger than that provoked by Dr David Tuller and our trusty patient-scientist cohort’s ongoing debunking of the results of the PACE trial. So brace yourselves pwME. Since I started drafting this blog, it’s already begun

* * *

The sharing of good science is all the more urgent when incidents of parents of children with ME being accused of FII (Fabricated or Induced Illness) by educational and medical authorities continue to rise. Jane Colby of the Tymes Trust, who has been monitoring children with ME in UK since the 1990s, says the number of families who have been investigated has now reached 232, with over a hundred cases in the last 5 years alone.

Gigi Joseph

In the last week, 17 year old Jehan ‘Gigi’ Joseph has finally been released after four months in Lewisham Hospital in UK after a Consultant declared she did not have severe ME (despite being unable to eat, speak or walk) but ‘Pervasive Refusal Syndrome’. Her mother Dionne (a clinical psychologist with 20 years’ experience) was threatened with police action and had to bring in the combined PR weight of international ME advocacy to prevent Gigi being sectioned under the Mental Health Act and confined to an Adolescent Psychiatric Unit.

Gigi has ME so severe she has to be tube-fed

In the US there is outrage that immigrant children are being separated from their parents and kept in cages; in the UK, Australia and Denmark the same is happening to sick children with ME, when their parents insist they are physically not mentally ill. Will it take Amnesty International stepping in on behalf of kids like Gigi before this abuse is recognised as a human rights issue?

The Big Green Truck is about to conclude the Africa Clockwise circumnavigation of the continent – Sam Pearce is aiming to arrive home in Cape Town in September

Twitter: @samfleurpearce
Facebook: Africa Clockwise
Instagram: @africaclockwise

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Climate Slave Reparations

Este é para Moçambique

Watching the highlights of the opening ceremony of the 2012 London Olympics, the year before we left to travel Africa Clockwise, I remember being quite staggered that director Danny Boyle had chosen to celebrate the Industrial Revolution as Britain’s crowning achievement. Was he really glorifying the guys in the stove-pipe hats who had whipped working class children to work 16 hour days in dire conditions? Was he really paying homage to the men who built their wealth – and the country’s, and the empire’s – on the backs of millions of slaves who were stolen from Africa along with their natural resources?

I was appalled by the smugness of Branagh/Brunel as he surveyed the destruction of the ‘green and pleasant land’ in the name of ‘Progress’. With all Danny’s genius for telling stories, did it not occur to him what the descendants of half the world who fell under the shackles of the colonial project would think? Those whose forefathers paid in blood, sweat and trauma for the cotton that built Manchester, the sugar that built Bristol, the tobacco that built Glasgow and the guns that built Birmingham? Did he really think they would join in lauding the founders of the Industrial Revolution, as they lifted up the burning brand at the centre of the five rings – the forging of which looked very much like the chains that had held the masses down across the global south for 300 years?

Surely Boyle could do better? I had hoped that the man who brought us the brutal realities of Trainspotting and showed the other side of ‘heroin chic’, might have reflected that the West’s addiction to fossil-fuelled profit was no less insidious. But there was no hint that the triumphs of Colonial Team GB were to impoverish huge swathes of the southern hemisphere and sew the seeds of suffering and inequality for generations to come.

In the nineteenth century, industrial emissions were dominated by the UK and EU countries; in the twentieth century the US took over as chief emitter of greenhouse gases; a mantle swiftly chased into the twenty-first by China. Today “the monthly emissions per capita in rich countries are mostly higher than the yearly emissions per capita in poorer countries”.

Check this graph of cumulative emissions since 1751 to see how the tiny sad blue sliver that is Africa compares to the dominant sunshine yellow effluent of the 28 countries of Europe. In this chart that maps energy use per capita as evidence of extreme poverty, Mozambique is at the far end.

According to this (if you only click on one, make it this one) genius interactive graphic, the world’s top 3 emitters in 2017 – China, USA and EU – contributed 14 times the emissions of the lowest 100. Mozambique was responsible for 0.06% of global emissions; Zimbabwe was also at 0.06% and Malawi at 0.02%. So in total they are causing 0.14% of the problem, yet they are bearing the brunt of the consequences.

On the day of the first global climate strike 15th March, Cyclone Idai made landfall, killing at least 1000 people across Mozambique, Zimbabwe and Malawi. Wind speeds of 165kmph, torrential rain and disastrous flooding destroyed 90% of the city of Beira, damaging all 17 of the area’s hospitals and leaving an inland sea visible from space. Flash flooding in Zimbabwe caused hundreds of deaths in Chimanimani district; in Malawi, hydroelectric power plants were damaged and collapsing dams caused the loss of 1400 homes in Blantyre.

Tens of thousands of people have been displaced and thousands more will go hungry this year (as a result of maize crops destroyed just a month before harvest) or die of cholera from stagnant and infected water.

Less than 6 weeks later, on 25th April, Cyclone Kenneth “the strongest tropical cyclone to make landfall in Mozambique since modern records began” came to klap the coast once again just north of Pemba, with sustained winds of 220 kmph, equivalent to a category 4 hurricane. Kenneth was the record-breaking tenth tropical cyclone of the 2018-19 season, destroying 2500 homes in the Cabo Delgado province and 70% of staple crops in the Comoros.

This was the first time in history that two storms of category 2 strength or higher have hit Mozambique in the same season. Please click on the consequences: 3 million people were left in need of humanitarian assistance. The apocalyptic pictures of the devastation suggest Beira and Pemba have been trampled by three of the Four Horseman of the Book of Revelation: of pestilence, famine, war and death, it seems climate change catastrophe may have meted out all but war on southern Africa already.

Sitting here marooned in a garage in Malawi for more than 7 weeks (our 12th in garages this year) we are nevertheless feeling blessed because the delay in getting parts saved us from being in the impact zone – we had planned to be exploring the northern Mozambique coast by late March. Now I’m dreading what we are going to see.

So what if the proud leaders of the Industrial Revolution took the lead in combatting the catastrophic effects of it?

At a UN World Conference Against Racism in Durban in 2001, Britain blocked EU countries from agreeing to ‘apologise’ for the transatlantic slave trade as a ‘crime against humanity’, but 15 former colonial powers finally consented to express ‘regret’ – on condition that such an acknowledgement would not admit any obligation to provide financial compensation. Successive British prime ministers from Blair to Cameron have repeatedly said how impossible and impracticable it would be to make reparations to descendants of slaves taken from Africa to serve the insatiable labour needs of the Industrial Revolution.

Well, now is their chance to make amends.

Rehousing and rebuilding infrastructure for the tens of thousands affected in Mozambique, Zimbabwe and Malawi would be a good start. Not only possible and practical, it might even be cheaper than building an Olympic stadium. Definitely cheaper than the rebuilding of Notre Dame, and, I venture to surmise, would grant you more leeway in heaven. (With what the colonisers have on their consciences, a prudent move.)

If they want to pass the buck, we know exactly who’s responsible for all the extreme weather and the 6th mass extinction currently underway. Just 100 companies are responsible for 71% of greenhouse gas emissions.

The Carbon Majors Report of 2017 found that “more than half of global industrial emissions since 1988 – the year the Intergovernmental Panel on Climate Change was established – can be traced to just 25 corporate and state-owned entities“. Coal and oil parastatals in China, Saudi Arabia and Russia are named as top culprits alongside invester-owned Big Oil stalwarts ExxonMobil, Shell, BP and Chevron; South African  company BHP Billiton is no. 20 while Anglo American, Glencore and Sasol all make the top 50.

What’s more, they have known what they’ve been doing for 40 years. Big Oil, like Big Tobacco, knew precisely the risks to which their product was exposing their consumers, but chose profit over health: in Big Tobacco’s case, the health of smokers; in Big Oil’s, the health of the planet and life itself. Though the scale of the cover-up undertaken by Big Tobacco through the 1950s-70s is egregious, it pales into insignificance beside the Big Lie being promoted by Big Oil from 1970s till now.

If you are in any doubt about this, please listen to the epic podcast that nailed it: Drilled by Amy Westervelt, which “investigates the propaganda campaign of the century – the creation of climate denial.” In The Case for Climate Reparations (April 2018) Jason Mark asserts:

“The Carbon Barons are guilty not only of fraud but also of reckless negligence, of failing to use their early knowledge about climate change risks to shift the direction of human affairs. You can decide not to indulge in luxury emissions like a trip to Europe, but such abstinence will do almost nothing to reduce global warming. The Carbon Barons are in a different position. When they learned that their products could be catastrophic, they had the ability to intervene in the course of history. They possessed the scientific awareness, the economic might, and the political influence to have avoided climate chaos.

And they chose not to.” 

As the Carbon Barons have governments and the press in their very deep pockets, they think they are too far above the law to be touched:
“Between 2006 and 2016, the percentage of Americans who believed that humans were responsible for global warming went down, even as scientists’ certainty in their warnings increased. In the last 20 years, ExxonMobil has routinely broken U.S. records for corporate earnings. In 2014, the company posted its biggest annual profit ever: $32.5 billion.”

Mark continues: “This century will witness trillions of dollars of infrastructure and wealth destroyed in the course of unnatural disasters. Millions of human lives may be lost in heat waves, droughts, fires, and floods. Beyond the losses for human civilization, there are the damages to wild nature—the altered forests and the acidic seas. Is any settlement large enough to remedy the extinction of a species? One stumbles in trying to make such a reckoning.”

Ta-Nehisi Coates, in The Case for Reparations (June 2014) declared:

“The popular mocking of reparations as a harebrained scheme authored by wild-eyed lefties and intellectually unserious black nationalists is fear masquerading as laughter. Black nationalists have always perceived something unmentionable about America that integrationists dare not acknowledge—that white supremacy is not merely the work of hotheaded demagogues, or a matter of false consciousness, but a force so fundamental to America that it is difficult to imagine the country without it.” 

Can we extrapolate from Ta-Nehisi Coates’ comment on reparations for slave descendants suffering 400 years of economic abuse in the US and apply parallel logic for those about to endure the protracted horrors of global climate slavery into the next century? Can we admit that we are all in thrall to “a force so fundamental” to the world that it is difficult to imagine the planet without it: elitist greed, the pursuit of profit, the myth of perpetual growth and the wilful blindness to the ultimate price that capitalism’s slaves paid and climate slaves are about to pay?

The climate emergency we are facing is an opportunity to reject the financial system that has promoted such grotesque inequality and to recall ourselves to our innate cooperation and compassion. As we stand up for our planet and choose life, we may yet reclaim our humanity. A luta continua

With heartfelt thanks to the Instagram @ilhafamiliamz from the Ilha de Moçambique for the photos and the inspiration.

Com sinceros agradecimentos ao Instagram @ilhafamiliamz da Ilha de Moçambique pelas fotos e pela inspiração.

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Egypt 5: Marsa Shagra – Reef Break

The first thing Red Sea Diving Safari founder Hossam Helmy told me was how pregnant black and white tip reef sharks are the only shore sharks of the 12 species found in the Red Sea. They come to shore to find caves to lie low in because that’s the only place there is a ground current with enough oxygen to allow them to rest and sleep safely in the shallows. The baby reef sharks feed on silverside fish, so when the bait balls arrive, his 10 year old grandson starts looking for them.

This fascinating fact also struck me as an apt metaphor for what Marsa Shagra, the largest of Red Sea Diving Safari’s three dive sites, felt like to me: a haven where I could pause and catch my breath; rest and build up my strength.

Sampson with the legendary Hossam Helmy, founder of Red Sea Diving Safari

and his grandson, Ahmed, waving on the right

We came to Red Sea Diving Safari on the advice of Heba from HEPCA; when I asked her which was the best dive experience on the coast, she didn’t hesitate to recommend them. Ruby had done her PADI Open Water qualification with Pisces Divers in Simonstown the year before we left in preparation for reaching Egypt. So she’d been waiting to scuba in the Red Sea since she was 11 – that was a long 5 years anticipating and I really didn’t want it to disappoint!

Sampson qualified to dive in Jeddah during his time working in the hospital in Saudi before we met and Zola had done his PADI at Pisces during the Ebola hiatus in 2015, so all three Sampsons were amped and ready to explore what the Red Sea had to offer in the absence of surf. I was really glad I hadn’t pushed myself to learn with Ruby back in 2012 ‘cos I sure wasn’t up to it now.

* * *

We’d set off south from Hurghada on the Marsa Alam road on 30th Dec after stocking up with bagfuls of awesome fruit and veg. Ripe figs! Mangoes, kiwis, pomegranates and seriously The Best Strawberries In the World. It saddens me that, having been in charge of all shopping on the west side, I was unable to set foot inside a market the whole time we were in Egypt. Ruby took charge and was repeatedly hit on by men twice her age telling her she was beautiful…

The best strawberries in the world? R10 a kilo!!

Sampsons were also busy conducting extensive research to find the yummiest halva in Egypt

Back on the road

Egyptian roads were some of the best on the continent, brand new highways most of them, but blemished with a ridiculous amount of speed bumps. An appropriate analogy for how Egypt’s paranoia scuppers herself. The state is a massive top-heavy military machine, so focussed on security, it forgets to put the welfare and convenience of its own people first and ends up hampering progress.

Once again soldiers arrived within 15 mins of us parking off for the night in this deserted spot

The prospect of waking up by the sea bolstered us to resist their instruction to move on by claiming we were broken down…

That night I was woken. every. hour. by. Monte. The crazy lack of sleep meant I had no choice but to travel in the back, on the bed, because I couldn’t cope with the resultant pain sitting up.

I completely lost my rag on Whatsapp. My brother, temporarily resident in India and investigating Ayurvedic remedies for his own maladies, chose the wrong day to recommend “just rice water and tumeric for breakfast, fruit is too cold” to a woman who’s been crisis managing a chronic illness since 1992…

He was complaining that, despite two whole days of resting up, he’d woken with dodgy bowels again and was feeling very sorry for himself as a New Year’s party was now probably out of the question. I’d been resting up for more than two solid months since I went down in Croatia and was still feeling so shattered, I did not handle this well:
“You do realise this has been my life for 25 years??”

I’d like to thank him for allowing me to rant. The end of 2017 was like I’d let the genie out the bottle. No longer was I going to pretend. I’d hit my limit of hiding my daily struggle from my family, always being empathetic and never expecting reciprocal understanding because I never explained because I didn’t want to waste the energy. Suddenly I had a lot of ground to make up.

* * *

We arrived at Marsa Shagra mid-afternoon and were welcomed by friendly marketing manager George. I was pleasantly surprised by the elegant layout of the place and how it complemented the stark beauty of the environment. It was Christmas week, they were at 75% capacity, but despite there being 160 people there it felt very relaxed and uncrowded.

Marsa Shagra is so beautifully designed…

Its long lines and cool verandas just invite you to float in…

make the most of the stunning surroundings and fabulous Egyptian sunshine, and relax

The wide smile of George Nady, marketing manager, sums up the welcome at at Red Sea Diving Safari

Those numbers were still too much for Zola. His social anxiety had become increasingly apparent in the last 6 months since his sister had started boarding school and ceased to be a shield for him. Zola has always been quiet – not shy exactly, but always reluctant to talk. He’s far more comfortable in one-on-one situations than group chats, and in public will rarely speak unless spoken to.

He has a self-possessed, self-sufficient quality that was apparent even when he came to us at 6 weeks old, with his thumb, opposite forefinger and big toe in his mouth and quiet eyes as wise as an old man’s. The name we chose for him reflects how powerful his character was, even at that age: ‘Zola’ means ‘calm’ in isiXhosa, as in “for goodness’ sake mother, chillax” – that was the vibe he projected, even as a baby. He was the polar opposite of his loudly demanding sister in every respect, and my reward for surviving her infancy. We were blessed to receive such a determinedly peaceful spirit into our home.

I think it was around the time of his 13th birthday in France, when I apologised to him for not going out to celebrate, like we used to at home, that Zola revealed he didn’t mind because he “didn’t enjoy going to the Bluebird anyway, too many people”. I was so shocked, then horrified that I had never known he was feeling overwhelmed and hating it. He hides his anxiety so well – almost too well: he doesn’t shake or stutter, and always looks at ease – so people around him don’t pick up on his discomfort and he rarely points it out. I flatter myself that I have become much more attuned to his feelings now we have spent so much time together without the whirlwind of his sister blasting his subtle vibrations.

So Zola refused to brave the public eye and go for a swim with Ruby. As a result, despite me feeling dazed with tiredness, I went with her. Thereby choosing to go out in the golden afternoon sunlight over a nap and a chance of going out tonight for New Year’s Eve because I definitely couldn’t do both. (Anyway Sampson was putting up the tent and I couldn’t bear the banging). I sat on the shore while she had a chilly dip then we chatted and made enquiries at the dive station. Again, I was too tired to shower, just added a tin of tomatoes to veggie leftovers before our evening episode of Sense8 and half a pomegranate.

Our Marsa Shagra set-up: Monte and Sampson banished to the tent so I could get some uninterrupted restorative sleep

We were in bed at 8pm. ON NEW YEAR’S EVE. Even for me, this was pathetic. My poor teenagers. In vain I suggested they go together to check out the disco up at the restaurant – the lights were twinkling temptingly – but they just got annoyed with me.

New Year’s Eve at Marsa Shagra – what a privilege

Zola’s reluctance I could understand, but Ruby’s attitude was harder to fathom. Her whole life she’s been a social butterfly, but she seemed suddenly far less keen to mingle. Admittedly, she was exhausted after her end-of-year exams and first year back in proper stressful school. And after her experience in the markets, she wasn’t eager to expose herself to any more Egyptian chat-up lines. But I hoped she wasn’t denying herself a night out because she was concerned about the effects of disturbing my rest.

2018 on the horizon

* * *

1996-7 was an intense period of catching up on my lost partying years. Sampson sure got into the spirit of that. Ever the scientist, he once undertook to identify the purest MDMA in Cape Town, so that the toxins in the fillers of the dodgy E’s floating around wouldn’t mess me up. After a month or two of thorough research, my selfless(!) boyfriend declared a winner and we carefully planned to take it after lining my stomach with rice padkos at ‘Dagga Dirk’ Uys’ Wingerdstok Festival in Stellenbosch.

While Sampson was coming up like a rocket, all I remember was feeling a gentle swell of energy and my foggy head clearing. As we walked up a slope to the dancefloor in front of the stage, I suddenly realised with amazement that it hadn’t been an exhausting effort – I’d just glided up it. It had been nearly 5 years since I had last gone uphill anywhere without girding myself for it. I had forgotten what it felt like not to feel tired or achey all over. Everyone else was buzzing their tits off, I was just feeling ‘normal’. It was mind-blowing.

O how I danced.

Unfortunately, the euphoria of those pain-free energy-full couple of hours didn’t outweigh the PEM and total system onslaught the experience cost me, so it wasn’t something I was tempted to repeat.

(A few years later, I was to come to the same conclusion about childbirth.)

* * *

We were woken briefly by fireworks at midnight. Ruby and I mumbled ‘Happy New Year’ to each other over the headboard. In the tent, Sampson managed to comfort Monte straight back to sleep. But when he took him out early running after his bike, they got attacked by a pack of wild dogs. Has‘Sam’ the doctor had to stitch him up, poor feller.

The definition of a hang dog look: Monte in his homemade collar to protect his stitches

Awwwwww

When I woke at 8am I was soooooooo grateful that we’d chosen sleep instead of ‘party’ – it was wonderful to be upright and relatively free of pain. I felt my fingernails had finally gotten a hold on the slippery slope I’d been on the last few weeks: a few more days of this, I told myself, maybe I’d be back to walking.

At Marsa Shagra I started giving myself daily marks out of 10 in my diary, like I used to when I was first severely sick. Back in 1994/5, I did it to try and get a handle on things and boost myself with a sense of progress, even if it was minute. I soon noticed that, like back then, no matter how ghastly I was feeling or how much pain I was in, I never gave myself less than 5/10.

This wasn’t because I was trying to be brave, but because I always knew it could be a lot worse. Perhaps I also daren’t be honest with myself because the reality would be overwhelming. So 5/10 actually means dire. 6 means holding it together. 7 means merely lousy. 8 means I was up to Doing something! 9 is a day that felt amazingly productive or nearly not tired. In that state you would suspect you were going down with something and would consider having a day off work, but that’s a good day for me. This is why patient-assessed CBT criteria are often worthless: we are hoisted by our own petards of positivity.

Lucky picks the best places to park off

While the Sampsons tumbled to get up and out for their first monitored dive at 10am, I did three short forms of T’ai Chi and was very chuffed to be up to it. Slowly and steadily, with rests in between, I washed up, tidied the truck and restored calm. I fielded conversations about our trek with an American family, and an Egyptian plastic surgeon called Ahmed who asked me: “Would I be welcome travelling Africa?” (“As a Muslim or Arab” his unspoken addendum.) “Please do it and let me know!” was my reply. We have it easy travelling as we do with our rucksack of white privilege, but in my experience, Africa is consistently more welcoming to all comers than any other continent is to Africans.

Mancunians Craig and Chantelle also popped in for a chat one day when I was cooking up our last veg – they have a 7 ton truck of their own, love diving and rate this place as their favourite. Craig left me £20 to treat the kids, bless him.

Get ready for the best scuba-diving on the Red Sea

With the best teaching facilities

so much information

and so many dive sites to choose from!

The kids were amped…

to pick up their gear from Khaled Sulaiman in the dive kit station

and get strapped in

This is no small operation

The equipment is top notch

And the comprehensive attention to detail is most impressive

The rule about walking within the lines to protect the reef sharks’ habitat is rigidly adhered to

Sampson looking like an old pro

So proud of my soggy adventurers

How did such a wimp as I cultivate two such deep sea explorers?

I tried not to be bruised by Sampson’s exhausting energy when he came bounding back in post-dive. I tried not to be hurt by his brutally honest and unwittingly exclusionary enthusiasm: “Best experience as a family ever” he announced, as they noshed voraciously.

They absolutely loved it and dived twice a day for the rest of the week

As well as dives twice daily, Sampson was taking Monte running for kilometres on his bike, trying to get him exhausted enough to sleep all the way through the night. It was like having a toddler! Monte had doubled in size since landing in Egypt – we would never blag him onto the plane now. I was wondering how on earth we were going to manage if he carried on growing at this rate. He was already knocking me over; he didn’t mean to, his boundless enthusiasm was just a bit much for the truck and he didn’t know his own strength. I don’t know who he reminded me of…

So much love…

surrounding this little feller

and he was having such fun with his friend

 – endless chasing…

With Monte outside in the tent with Sampson, I was getting exponentially more sleep. By 3rd Jan, I’d pulled myself up to 7 out of 10 and I woke the kids by boogying to Beyoncé in the kitchen – MOOD. To have even a little energy after so long without it is astonishing. I had lost a lot of fitness over the past couple of months as I’d been unable to walk, but the silver lining was that my enforced bedrest may have cured the bursitis in my hips I’d had since bouncing about at the Magic System gig in Dakar!

By the fourth day I was up to interviewing Mr Hossam Helmy. What a gorgeous soul. A stupendous story teller with an encyclopedic knowledge of the ocean here. Despite being a bear of a bloke, he giggles with full body delight like a little boy.

Mr Hossam Helmy, founder of Red Sea Diving Safari

His passion for this place burns like a beacon, flickering through his eyes from a deep place inside. It has sustained him through 30 years of building up this business and fighting for the conservation of the area.

We were so honoured to spend this hour with him

Mr Helmy had a very privileged upbringing. His father was a General of the coastguard, and after getting a law degree at police college, Hossam went straight to working as special forces security detail in the office of President Sadat. But when 7 years later Sadat was assassinated, Hossam lost faith in his role. His father advised him to wait another 4 years, which he did – by which time, the General had passed on. When he handed in his notice, his disbelieving chief said “Not since Pharoah and Moses has anyone resigned from such a position”!

Beautiful Marsa Shagra with its outdoor bean bag lounge

At 36, young Hossam took himself to America to learn how other places worked. In one year he had 17 jobs, and was fired from 12 of them!

“I was so spoiled. 21 years old and working in the presdient’s office, on intimate terms with ministers, living in a palace, 7 star hotels and Mercedes… I couldn’t make a cup of tea! I needed to change my life and work with my hands. I decided to go to America, the most advanced country in world, to learn how they became like that. I worked as a dishwasher, gardener, driver, in a supermarket, pizza delivery, barbecue place… I didn’t know what I was doing.”

The cafe

The gift shop

Hossam hated Oregon snows and preferred the warmth of LA. He described how the ‘Egyptian way’ seeks to shrink tasks by cutting corners, rather than striving to become more efficient. He had us in stitches relating how he single-handedly destroyed all the photocopiers of the Navy in San Diego, after being sent to change a single ink cartridge, and how he managed to burn down a Mexican restaurant on his first day as Chef by piling four times as much wood in the clay oven rather than going out into the cold four times over four hours as he’d been told…

America, he said, taught him to be diligent, and logical.

View over the dive centre

On the plane back to Hurghada, Hossam and his friend sat next to a Dutch woman who was coming to work as a dive instructor in a resort, and they shared a taxi to her hotel. The next day she offered his friend a free dive. He eavesdropped on her instructions, walked into the dive office, helped himself to equipment and took himself in.

Luxury tented accommodation

These cosy ‘huts’ are the mid-range option; the chalets have plasma TVs and en suites!

This chutzpah has sustained him. On his first diving safari he and Dutch diving teacher Karin travelled the length of the Red Sea coast from Shaam el Sheikh to Quseir. They were forbidden to go any further south because the easiest way to patrol the open border was to block the road here. Hossam used his contacts to get permission for Red Sea Diving Safari (a business than didn’t yet exist) to go in to the Marsa Alam area. It was 1989.

He found 37 unexplored breaks in the reef that allowed pristine diving conditions. For next 12 years he took visitors to each of these bays in turn, never more than 3 days at a time. He lived in a tent 2.8m x 2m – which is a very similar living area to the truck. I would’ve loved to interview his wife and ask her what she thought of this lifestyle choice – she married the son of a General after all, but ended up living 12 years in a tent, washing in water heated by the sun on black plastic bags and no electricity, only candlelight?!

The Marsa Shagra site in 1990s when Hossam first started his diving safari business

Living in a tent at Marsa Shagra is hardly a hardship now

When he arrived in Marsa Alam – an area the size of Switzerland – he was only the 19th inhabitant; now, thanks mostly to his enterprising spirit, its central town supports 11000 people. He chose the best 3 sites to develop: the ‘diamonds’ of Marsa Shagra, Marsa Nakari and Wadi Lahami, because they are closest to the best offshore reefs.

He told us that 62% of all sea life resides in coral, and only 38% of fish in the open sea. When he started, there were 818 documented species in the Red Sea; now there are 1453, with undiscovered species suspected to number up to 5000. “We discovered 4 ourselves!” he said grinning.

When I asked him about his proudest accomplishment, he pointed to the fact that his lawyer’s training allowed him to resist government pressure to expand to 1500 rooms at Shagra. “Over my dead body” will they exceed 120 rooms, maximum guests 250 and only 120 people per day allowed to access the house reef. “Coral is like the pyramids, this is our riches… This is the only thing of value we have, we have to save it.” He is very proud that reefs under his protection are amongst the only coral in the world where fish stocks are increasing not decreasing.

His ambition is to continue to bridge the divide between scientists and locals, and combine their fonts of knowledge to deliver environmental education to Egyptian teachers and ensure conservation laws are upheld by the next generation. Hossam also opened a school to ensure his adored grandson could continue living with him (Ahmed’s father is in NYC working for the UN). The school, which started with 12 students, now has 120 and offers free diving and full board to teachers to tempt them from higher salaries in Cairo!

Hossam was most upset to hear we were not eating in the restaurant – “but it’s the best food on the Red Sea coast!” – and insisted we try it that night.

View from the restaurant

So after I’d lain on the bed for an hour or so recovering energy, I put on jeans, socks and one of the cosy Red Sea Diving Safari hoodies he’d given us, and headed up to the restaurant – wow!

Chef Waled welcomes you to the five star buffet of Marsa Shagra of which Mr Helmy is rightfully proud

Sampsons were overwhelmed by the choice…

the scale…

and the attention to detail…

Not to mention the DESSERTS!!!

Hubster was in heaven

The bijou pastries deserve a close-up

The next morning, I walked about 200m from the truck to the dive centre. After I’d sat quietly writing my diary recovering from the exertion, I walked back along the shore marvelling at the colour of the calm water over the reef, with blues from turquoise to cobalt. I was consciously banking images of the glittering sea in my brain for future use, so that when I am bedridden I can take them out, dust them off and feel the joy I felt today. I’ll be glad I travelled while I still could.

Sampson was thrilled to meet this man and his daughter

who was crossing Egypt in a three wheeler!

The restaurant went out of their way to accommodate my dietary restrictions. I was spoiled with a special spinach and onion mix, pumpkin with dill, paprika chicken – the wonderful food seemed to be making a difference to my strength.

Sam-friendly lunch made with love

Walking up to the restaurant for the third time in two days proved too much, I had to lie down on the dining chairs. It reminded me of when I first got ill in my twenties and hadn’t yet learned how to pace myself, how I would crash out in restaurants and end up with my head on the table because sitting up was impossible.

That was the night we watched Unrest, Jen Brea’s documentary on living with M.E. It had just been shortlisted for an Oscar, and has done an enormous amount since to raise awareness globally (now even offered as credit for medical students in US.) Jen’s story is very moving, as were the glimpses into lives of other people with M.E. around the world, but if I’m honest I was a little disappointed at the lack of scientific depth and clarity. I know I couldn’t expect a definitive explanation of the disease but I’d hoped at least for a comprehensive summary of symptoms; I felt a lack of closure.

But of course this was just Jen’s account of the first couple of years of her illness and, in her moderate to severe state, she couldn’t be expected to reflect anything more than that. She had devoted every ounce of her limited energy to expressing it to the best of her ability and I couldn’t but be grateful.

Unrest did allow Zola to realise it wasn’t just me with these bizarre symptoms, and the mother/daughter story featured was invaluable for spelling out the inheritance risk to Ruby (which she’d spent most of the year poopooing whenever I expressed concern about how she was pushing herself doing too much studying on too little sleep).

Bless ’em

My little softies

But there was a shocking lack of response from Sampson. Not a comment or a hug or a single sign of empathy. I was quite befuddled. His silence was so deafening, even Ruby commented on it.

I woke at 1am with my brain shouting at me: if I want to widen understanding about M.E. and fill in the gaps, I have to take responsibility for raising consciousness myself. Particularly around the African impact of this debilitating disease – what happens to people with invisible illnesses in invisible countries?

Monte-free, I slept on and on till 10am and felt almost miraculously better. It was my first day without pain or extreme dizziness since arriving here. Marsa Shagra food was definitely helping, thought I don’t know which was more bolstering – the extra protein or the break from cooking!

On this final day, we pulled off the video shoot of the Saving Water with the Sampsons script I had written in Croatia 2 months before as an educational tool for Cape schools during the drought. Day Zero was now predicted for April and water restrictions were being tightened on a monthly basis. If you look carefully, you can see me gradually wilting over the course of 4 hours’ filming – I’m lying down on that bed because I can’t stand up any longer.

Zola was initially not keen: he didn’t mind doing the Simpsons parody intro on his unicycle, but flatly refused to read his speaking part. I tried to persuade him but it was Big Sister encouragement that worked – he ended up being a complete natural and acing it. (His disgust that Capetonians could not manage to live on 87L water per day is not feigned – he was genuinely shocked that anybody would struggle with even 50L. That’s when I knew my kids were going to survive OK, no matter what.)

We spent a golden week at Marsa Shagra and were only charged for 5 days’ camping – all our dive costs and the two extra days and superb restaurant food was gifted gratis. A thousand thanks to Mr Helmy and manager Mr Rafiq for their generosity. We left on Coptic Christmas day Jan 7th so we’re sorry we didn’t get a chance to say goodbye to George who was enjoying his holiday!

Thanks a million Mr Helmy and all at RSDS

Especially Mr Rafiq

and Mohamed Abdelghany and Ahmet Magdy

We will never forget you

Red Sea Diving Safari is the most proactively eco-tourist destination we have experienced while travelling Africa Clockwise so far. The house reef at Marsa Shagra is world class, the diving, food and accommodation superb, the atmosphere always relaxed. But best of all is the passion of the people who run the place – it is tangible in all things and you leave feeling more optimistic, your soul refreshed. If this is possible, maybe humans can save the planet after all!

Ever optimistic, smiling through pain

Marsa Shagra meals soon became just a happy memory, but we comforted ourselves that first night back on the road with a strawberry-based supper – by now, we were buying 3 kilos at a time! They were simply delicious with crumbly Egyptian white cheese and fresh coriander…

Not to mention dipped in chocolate – Ruby and Dad’s Friday Night Treats!

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Egypt 4: Hurghada ‘Dog Tired’

Let me tell you a bit about my husband.

I spent a chunk of my early twenties confined to my bed or my house. Once I found my feet on the road to recovery I was eager to catch up on all those lost jolling years. Enter Sampson, party-starter-in-chief. And finisher. And mostly in charge of whipping it up in the middle.

Our first meeting in Cape Town in May 1996 was not auspicious. A mutual friend had invited me to a jazz gig at the Brass Bell and introduced us at the interval. “Mark’s also from England” he said, in the tone of “Hey, you’re from the same island, you’re bound to get on”.

My first impression was of an arrogant clown. Worse than that, I made no impression on him at all: Sampson doesn’t even remember the occasion. He was about to perform – he and his bestie Ampie Omo, soon to be a member of internationally renowned band Boo!, did a comedy busking act in between the Truly Fully Hey Shoo Wow band’s sets which mostly consisted of running round to the Pulp Fiction soundtrack after sniffing Grandpa Powders off a mirror, pretending to shoot people with bananas. While our mutual friend and I were wetting ourselves in the corner, it was going totally over the heads of the nice families having Sunday lunch at the Bell.

(Just to be clear: Marcus Wyatt, this is all your fault.)

The second time, a couple of weeks later, I bumped into Sampson and Ampie at the bar at the River Club and greeted him with a breezy “Oh, hello Mr Cornwall” because I couldn’t remember his name. On the dance floor half an hour later, he sidled up to me and said, “Why don’t you let yourself go a bit?”. I took a deep breath and said simply “I have M.E. and I’ve been mostly bedridden for the last 2 years; if I let myself go, I’ll pay for it”. He apologised immediately and said he had a bad back himself and knew exactly what I meant.

That was our first conversation. You think he’d have steered well clear.

But he pursued me relentlessly. And with a commitment and dedication, that, in retrospect, he has shown for little else other than waves. That night he and I sat in a circle with a teenaged guitar maestro, who came fully equipped with the ready rolled, and our verbal jousting began.

(So Albert Frost, you are also partially to blame.)

Ironically, ‘letting myself go’ on the dance floor was exactly what signified ‘me’ pre-M.E. Letting rip at Saturday night Chicago house jams in the sweaty basement of Coventry’s infamous Dog and Trumpet in ’86/87 to Sweet Tee, Eric B & Rakim, the Cookie Crew and Hamilton Bohannon remixes, was what got me through 6th form (thanks Johnny). Not being able to dance because of this illness was far crueller to me than not being able to drink.

I booked Sampson as a novelty act for my friend Barbs’ leaving party, but his car broke down on the way and he never made it (a lifelong pattern already developing). A couple of days later, he turned up at my house and invited himself round the neighbours’  with me to watch a dreadful Die Hard video. When he finally left that night, my Mom asked me what he was like.
“He never stops talking!” I exclaimed.
“At last!” she said “Now you know what it feels like…”

Our first proper date was at the end of June, when he invited me to go with him to Soundzone’s Bandslam at the 3 Arts. We chatted so long when he arrived to collect me, we missed the first couple of bands (sorry Nine), but I remember Sampson fire juggling onstage with Squeal, and Arno Carstens so nervous backstage before he went on, he threw up. The Springbok Nude Girls were just about to be huge, but this was their first time  headlining a national tour, the beginning of the ‘South African music explosion’. We both remember that when Sampson took my hand to help me through the packed crowd to the front, it fitted perfectly.

(Debbie Bird: you’re also in the frame.)

Spontaneity – that’s what he symbolised for me then. For four years I had not been able to do anything without ruthlessly rationing energy for it. He was the complete antithesis of my enforced ‘careful careful, easy does it, consider all consequences before embarking’ lifestyle. Sampson was the epitome of living in the moment, and he made it seem easy. He didn’t dismiss my limitations; he just never let them stand in our way.

* * *

Leaving Cairo before dawn

Big Reg set off east down the brand new six lane highway from Cairo to Ain Sukna, a place we discovered doesn’t really exist yet. There was no town, just an interminable bland coastline of apartment blocks under construction. Every so often we would stop outside a resort and Sampson would go in to ask for oil – but out of season guest numbers were so low, donations ranged between 20L and 2L.

Monte had got over his first fear of Ruby

and was rarely out of her arms while travelling

…puppy love 🙂

while these two were still mutually enraptured

The Red Sea coast is one long building site

Thousands of apartments for sale

Presumably if you couldn’t afford one Fully-Finished, you went for one just Half-Finished?

The Cancun resort (complete with giant sombreros) donated 20L

Thanks Chef Mohamed El Hosseini, every little helps!

It was the second week in December, a month since we had arrived in Egypt and the northern hemisphere winter was definitely nipping at our heels. The truck was battling with airleaks, I was battling the cold and constantly disturbed sleep as Monte had to be taken out so often to pee.

Roadblocks became more challenging with an increase in non-uniformed security police. After one taking nearly an hour to verify our truck licence, Big Reg pulled over at the Zafarana Food Court. When Sampson went in to ask for oil, he and the kids ended up getting treated to a free lunch. I knew there would be nothing safe for me to eat, plus I was too tired to talk, so I ate ricecakes in the truck.

All the tourist buses stop at the magnificent Zafarana Food Court

A myriad of vendors to chose from including African entrepreneurial copycat versions of ‘Seattle Coffee’ and ‘White Castle’ burgers

Thanks to managers Mohamed Fawzy, Mahmoud Abdallah, Mahmoud Abdelfattah and Ahmed Mahmoud Magaran

The day before, to make way for Sampson’s stockpile of dog food, I’d taken the mini-Christmas tree out of food box, knowing we’d need it soon. Unbeknownst to me, Zola had tidied it away by wedging it in above his keyboard, which is kept inside a custom-made shelf above the table. I was still sat at the table working on my lap top when the Sampsons came back with 40L WVO, raving about the food and said we’d been invited to fill up with water round the back. As Big Reg pulled away, the tree base, a half kilo lump of plastic, slid out and fell directly on top of my head.

Who’d have thought something so small as that little green base could cause soooo much trouble?

My scream surprised me, but was unheard above the noise of the engine. I immediately knew something stupidly terrible had happened. Speechless with pain and dread recognition of concussion again, I struggled to get back to the bed. I lay down dizzy with nausea and went cold, though not as badly as when I hit the back of my head in Cote d’Ivoire 3 years before.

After Sampson filled the water tanks, he was invited to use the washing machine – an offer not to be sniffed at – and to have supper as well. Zafarana was spoiling us.

I was too unwell to watch TV and fell asleep by 8pm, but at 8.20 the police phoned to check on us. This was such a brutal awakening I couldn’t get back to sleep. Then every time Monte got up and out to wee, it took me over an hour to drop back off. At 7am I was feeling like death and crying with pain. Overnight my neck and spine had stiffened because of the blow on the head. I still hadn’t recovered from the walk around the pyramids, and right now I couldn’t see how I was ever going to.

So cute. But so exhausting to be around.

There was a freezing wind and it didn’t even get up to 20˚C inside today. I stayed on the bed in my T’ai Chi clothes the whole day while travelling, then all night because I was too cold and too feeling-like-I-had-a-giant-puppet-head to get undressed to shower. It was very grim. I was worried I wouldn’t get over it by Christmas and that this silly accident would ruin Ruby’s holiday. She cooked tonight, a meal from tins because there was nothing fresh left. We always sit together at the table for meals, but tonight I could not get up to eat – I felt too sick upright, and had to lie back down.

This was the day I drafted an invite to the virtual screening of Unrest, Jen Brea’s film about living with ME. It was my ‘coming out’ of sorts. High time.

The police insisted on giving us an escort from Zafarana to Hurgarda. I delivered tea and halva to our overnight guards. A second escort car took over when we crossed into the Red Sea province. Sleep saved me. As the inflammation gradually came down, I felt better. And the further we travelled south, the warmer it got. I know I’m going to be OK when the socks come off.

Our dilligent police escort: Lieutenant-Corporal Ahmed Ezed and Sergeant Abdul Nasser

Wind power very much in evidence all along the blustery Red Sea coast

along with sea…

and sand…

wind…

sea…

and sand.

* * *

Just before dawn on 12th Dec I was listening to a Woman’s Hour podcast to try and sooth myself back to sleep, a ploy that failed dismally because Nimco Ali, a Somali-British campaigner against Female Genital Mutilation (FGM) was chatting about her achievement in persuading the President of Somaliland to begin the process of banning the traditional practice of ‘cutting’ little girls. I knew that this had been a long battle in the Horn of Africa, but I was horrified to hear her talk about the stats in Egypt, a country where I had assumed women’s rights were far more advanced.

Wikipedia stated that FGM is much more common than I thought, assaulting 200 million women worldwide. It is carried out in 27 African countries, from Somalia to Senegal and from Egypt to Tanzania, blighting the lives of 98% of women in Somalia and 91% of women in Egypt. That’s more than 27 million women presently aged between 15-49, who were cut sometime between the ages of 5 and 14.

I felt sick.

Why isn’t this a global priority? Because it only affects girls. If it was millions of little boys’ bits being grabbed and razored off in the name of hygiene, there would be one helluva hue and cry. I’m under no illusions about the hegemony of the patriarchy and well aware we are currently living in a warped version of The Handmaid’s Tale but I still felt a complete idiot for being unaware of the scale of FGM for so long and was ashamed of my ignorance.

(Later, during March 2018, Reuters reported the difficulty the Egyptian state was having with implementing a 2008 ban on FGM, despite it being criminalised in 2016 following the death of a 12 year old girl in 2007. In May 2018, Egypt Today reported that FGM had been religiously forbidden in Islam. In July 2018 Somalia’s attorney general annoucned first ever prosecution for FGM after a 10 year old girl bled to death.)

The good news is that African women activists are leading the charge against this heinous practice. Since Dr Edna Aden from Somaliland reframed it as a human rights issue to the UN 40 years ago, today young women such as Jaha Mapenzi in The Gambia and Josephine Kulela and Agnes Pareiyo in Kenya, are making huge strides towards complete eradication.

When I climbed into his bed to tell him about it, Sampson was so appalled he said maybe we should drop the climate change focus and make it FGM.

That’s why I love him folks.

* * *

There are more than 300 hotels in Hurghada and we spent several days trawling the strip asking for oil at the Desert Rose, the Sea Star Beau Rivage, the Seagull, the Sunny Days, the Sphinx…

Welcome to Hurghada…

a town of hotels…

that trade on its eastern exoticism

While waiting to see the manager, we were always given a welcome juice

It was fascinating to see stupendously huge hotels such as the Seagull

and their Xmas preparations for European guests

We’d like to make particular mention of Mr Amr Abd Allah, GM at the Sea Star Beau Rivage (r)

who was so kind to let the kids swim in their fabulous pool and play table tennis while Big Reg parked outside

FOMO cat hated being left inside during walkies

Although we were graciously received by many, we were surprised that, despite enthusiasm for our cause, there was a distinct lack of managers putting their oil where their mouth was. Finally a bloke in a smoky office closed his door and spilled the beans: no hotel here in Hurghada could give us their waste oil due to a contract with the Red Sea government to dispose of it via HEPCA – an environmental protection NGO.

This was great news! I googled HEPCA, was bowled over by their mission statement and phoned immediately to make an appointment for the following week.

We headed out of town for the weekend towards the famed fancy suburb of El Gouna, hoping to find a quiet spot next to the sea. Big Reg took a promising right hand turn through a landscape of half finished buildings and ended up outside a kitesurf station run by an instantly friendly Russian dude called Alex who said we could park off by his house.

And that’s how we ended up spending Xmas with the Vashlyaevs.

I was too ill to meet with Alex’s wife Anastacia on our first day there 16th Dec. I managed to stand up just long enough that morning to cook the evening meal, then was flat out for the rest of the day.

Ruby was doing DIY karaoke and made Dad sing along to Queen. When she sang Adele’s When We Were Young it was so beautiful, she nearly made me cry. But Sampson had disappeared into his headphones, his only focus on lying down easing his back while watching TV. She pointed out that he wasn’t interested in her singing or me attempting Fiona Apple and he became blustery and defensive. I couldn’t handle it, took some more Ibruprofen for the ongoing throbbing sick pain in my head and lay down.

A few minutes later, she calmly and quietly took him apart. It was so sublime I wish I’d recorded it. My 16 year old daughter said stuff I always say but with added things I daren’t claim. How he never notices. How I always put myself out for them and he never does. How I’m much iller than I was and only going to get worse, so he needs to wake up and take over some of the stuff he’s always left to me. How a little bit of kindness would go such a long way right now.

I was sobbing at her insights and her wisdom and humbled by her nailing of us both – I didn’t escape criticism (just didn’t take notes on it!). Ruby told us both off good and proper, said she’d never forgive us if we give up and divorce, warning that she won’t come visit!

Wise beyond her years and not suffering fools gladly…

She made me go to bed at 8pm which was a good call, except then I woke at 1am and wept at the thought of her leaving – I needed her support so much, but was biting my lip not to burden her with that.

She needed a holiday, not more stress

On the second day I went in for tea with Anastacia and Ruby and was given a warming cup of cinnamon rooibos in Xmas mugs! YUM!! Nastya let us do three washes in her machine, thank god, which saved me weeks of exhaustion. She’s delightful, Ruby adored her and the feeling seemed quite mutual. This was the first time I started feeling Christmassy thanks to their efforts.

Nastya really gets into the Christmas spirit…

And was so kind to share hers with us

Fourteen years ago Anastacia came to Egypt on holiday and met Alex, who was a watersports rep in her hotel. Now he has his own kitesurf business and loyal customers who come back year after year to play in the guaranteed wind of Hurghada’s Red Sea coast. Petite Nastya is an awesome mum to their four children: Christiaan 13, Leo 10 and the twins Lisa and Pieter 5:

Nastya with the youngest members of the Vashlyaev family

I said mothers of twins should wear a badge so other mothers can recognise them and genuflect to show proper awe and respect. She laughed and you’d never guess by that delightful trilling sound what it costs her to be so gentle and giving to everyone around her 24/7. Ruby was in heaven in her kitchen and spent the weekend baking riceflour lemon cake for me and meringues with the kids. I was so grateful she was having some fun.

These two darlings are both such love-bundles

The following week we left to visit HEPCA’s swish office suite at Hurghada’s superb marina.

We spent a wonderful couple of days parking off at the Hurghada Marina

A spectacular hang-out for leisure and waterspouts

with gorgeous views of the El Mina mosque

not to mention the boats