“Like Sands Through The Hourglass, So Are… ”

Children, I am so sorry to have to tell you this, but there is no other way.

It is the job of parents to protect their children from the horrible truths of the world – the perennial violence, the abuse, the corruption – until they are old enough to come to terms with it. But there comes a time when hiding a dark truth is more dangerous than sustaining a white lie.

We have failed you.

We have ignored the wisdom of our scientists, the warnings of our activists, the greed of our corporations and the cowardice of our politicians. We have cosied up with our screens to drown out the howling outside our windows: the howling of the wind that is already too strong and the refugees who are already too many.

Now climate change calamity is upon us.

The last 5 years have been the hottest on record. Unabated greenhouse gas emissions due to human activity mean that global warming is likely to rise from the current 1˚C higher than pre-industrial levels to 1.5˚C as early as 2030, according to the most recent IPCC report. The resultant extreme weather conditions are ravaging all five continents. Already this year we have seen extreme heat and floods in Australia, and bushfires destroy vast tracts of irreplaceable wild forest in Tasmania  – as devastating as those which killed more than 100 people in California last November.

Hurricanes in the Atlantic, Pacific and Indian oceans are becoming more destructive. Antarctic ice sheets are melting six times faster than they were in the 1980s, which is why 200,000 migrants are predicted to be on the move in Bangladesh due to rising sea levels and increasing soil salinity. In Southern Africa drought and desertification due to more intense warming here by the end of the century may create millions more.

The tipping point is approaching much faster than previously assumed, leaving only 12 years to avert the catastrophe of pushing 1.5˚C. to 2˚C, when all the polar bears, whales and coral will be lost and an unprecedented climate experiment will be unleashed upon the world.

You know all those imminent disaster movies where the danger signs are there but everyone is blithely ignoring them apart from the one maverick guy with the passion and determination to point them out?

She has arrived.

The only person talking sense in the world right now is a teenage girl from Sweden whose autistic gift allows her to blank out the babble of glittery nonsense surrounding us and demand attention for the only facts that matter:

Our house is on fire
There is no more time.
We have to act now.

Greta Thunberg is a greater leader with a better grasp of realpolitik than any president or prime minister in the world today. (Seriously: listen to her TED talk now). It is time to stand with her, to strike for climate justice and speak truth to power. Tens of thousands of school kids across Australia and Europe have already heeded her call, and this Friday so too will students across UK, with the blessing of over 200 academics.

It’s time South African youth also joined #FridaysforFuture and demand that our authorities:

  1. Stop everything. Suspend all time-wasting arguments about land expropriation, Brexit or the Wall. At this rate, global warming will ruin most arable land before agreement is reached on reform and isolationism won’t keep out carbon or methane.
  2. Start taking this seriously. Declare a Climate Emergency and make ending fossil fuel production, reliance and influence the number one government priority (as Alexandria Ocasio-Cortez is proposing with the Green New Deal in US).
  3. Urgently establish independent panels of environmental and disaster management experts to make plans at local, national and international levels for adaptation and resilience.

In South Africa in 1976, Soweto children took the lead in protest. They refused to go to school because they were being forced to learn in the language of their oppressor. People all over the world were horrified that a government could shoot at children who were standing up for justice. It was the beginning of the end for the blinkered apartheid regime. Those children changed the course of history.

Greta is refusing to go to school one day a week until the Swedish parliament honour the Paris agreement because what is the point in preparing for a world that will not exist unless our governments wake up to realities? What is the point in us recycling yoghurt pots when 100 fossil fuel companies are responsible for over 70% of the world’s emissions?

She is right. School is pointless if it is not equipping you to face the coming situation. If it is not teaching you how to work together, to save water, to grow your own food and to maintain calm and peace in the face of potential extinction. Humans have wiped out 60% of wildlife since 1970; now we’re on the verge of doing the same to ourselves.

Ten years ago my husband and I realised the way the wind was blowing and decided to take our children on an adventure. For the last 6 years we have been travelling Africa Clockwise in a Big Green Truck running on waste vegetable oil. It was our chance to spend quality time together as a family, but also to prepare our kids to live with less, and cope.

When we set off, we thought it was their children who would bear the brunt of environmental chaos and potential social collapse, not ours. Not in our lifetime.

(I have a disease called M.E.: my metabolism does not work properly so, like Mother Earth, my energy is not renewable. My body is like a sieve and my energy is like sand that continually leaks out of the holes, even though I lie motionless for the majority of the day. Every night I sweep up the sand and pour it back into myself but inevitably some is lost, so I have less to start with tomorrow.

The one benefit of being mostly confined to my bed is that I am granted more stillness, more quietness, more space to face up to the magnitude of what is happening.)

The beautiful WWF Fight For Your World ad says: “We are the first generation to know we are destroying our planet and the last one that can do anything about it“. You are the mythical rainbow warriors the world has been waiting for. It is time to stand up with your peers and demand the attention of the stupid adults in charge.

In this disaster movie, there is no hero but you.

* * *


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Egypt 3: Alright Giza?

Wednesday 6th December 2017 was a great day in the life of the Sampson family.

What this picture of us at the pyramids doesn’t show is how it took me a week to work up enough strength to get there, and another week afterwards recovering from the walk round.

That’s a full week of bed rest conserving energy as much as possible in advance, followed by a week paying a heavy price in intense fluey musculoskeletal and hypersensory pain.

Nobody would guess to look at me. People we met along the way will not believe that in 2018 the majority of my time I was horizontal, resting up for that one hour every few days I could be in the world.

If you are beginning to feel reluctant to read any more of this poor-me illness stuff, I empathise. I don’t want to write it either. It’s boring and draining and relentless. Living through it was hard enough; going over it all again, a year later, is twice as traumatic. I hate dwelling on it.

I’d rather focus on the positive; that’s always been my natural defence, my way of coping. It is how I’ve got through all the years to now. But I owe it to everyone living with a chronic illness who’s too sick to express their reality to tell the whole truth and nothing but the truth. I’m going to try and leaven the narrative with the joy I felt at seeing what I could of the places we travelled through this last year, but I’m not going to pretend. So prepare yourselves for a rough ride.

At the time I wrote: “With Ruby in the truck there is an immediate upturn (of the family spirit volume button): more music, more laughing, more games, more sarcasm, more playing with the cat, more cuddling, more giggling, more delight. God how I’ve missed her, her female energy. How she calls out her Dad’s bullshit!! She is an Earth Goddess of Note.”

My daughter is the best fun of anybody I know. That dirty laugh of hers… Full bodied, throwing her head back. Her headbanging version of Tim Vine’s Pen-Behind-The-Ear meets the Sense8 theme tune was a highlight. She is – and always has been, even as a toddler – the living embodiment of couldn’t-give-a-f*ckness. It took me 30 years to evolve as far as she was already at 4. I can’t wait to see her in her prime.

I remember she and Dad having hysterics watching Monte sliding stiff-legged down the wooden ramp when the slatted side got accidentally overturned. But generally Sampson was grumpy because he wasn’t getting enough sleep due to dog-tending. Things were hard enough without him squandering the joy we could wring out of difficult days with his constant whingeing. Ruby began to get irritated on my behalf. God it was so wonderful to have an ally against his… – it feels disloyal to say, but there’s no other word for it – selfishness.

I wrote: “I don’t want to be Forced to Compete on Tiredness. I always win, and thus always lose. He chose his, I didn’t.”

We left the MCV garage at 11pm, which in Cairo is like driving in Cape Town at 4pm: busy, but still moving, just. We drove as near as we could get to Giza and parked in the shadow of a flyover.

It was so cold, Lucky the cat snuck into my sleeping bag at dawn. Sampson was up weeing Monte twice in the night before slamming out the door at 5am to walk him for 3 hours. At 6am an irate stall holder was banging on the side of the truck because Big Reg had unwittingly stolen his space. The pollution was choking. I cooked supper first thing because I knew I wouldn’t be up to it later. Sampson came in feeling sorry for himself and fed himself first; I couldn’t bear seeing it through Ruby’s eyes.

Sampson fell asleep on my bed because his back was sore so I sat upright at the table for an hour too long with the kids, sewing holes in Zola’s jeans. As a result I was way too tired to go out to the evening sound and light show at the pyramids, which we’d decided yesterday was the only time of day Big Reg could get there. Sampson wasted more of my energy arguing that we could take a taxi, but an hour’s journey there and back would drain the energy I needed to walk round. So we made a plan.

Still can’t believe we’re really here at last

At midnight, we drove to the five star Mena House Hotel, which is situated on the private road up to the pyramids, with no entry to normal traffic. We managed to blag our way in with the flimsy excuse of having an appointment about waste oil collection. It was gobsmacking to get up at 7am and see the pyramids so ridiculously huge over carpark. It was like the aliens had landed. When we gave our details in at reception, the Food and Beverage manager said he’d phone us later, which gave us the perfect excuse to pop up to the pyramids while we were waiting.

Morning! The Great Pyramid of Khufu surveys

the magnificent Mena House Hotel –

like Table Mountain, it’s always there to orientate you

but this monolith is man-made!

With such a huge population and such high unemployment, Egypt, like Nigeria, is a nation of hustlers. As damnably persistent as their mossies and flies.

The touts on the way up the road were invasive enough for Ruby’s brusque rebuffs to verge on rude. A man calling himself ‘Sabel the Bedouin’ who was especially friendly decided Zola was Sudanese. Zola was also greeted as “blood” by others who thought he looked “Nubian like me”. I’ve said before our son looks like an Egyptian prince 🙂

I was so glad we weren’t tempted to hire one of the ricketty horse carriages, as they were ridden round the bumpy grounds at lethal speeds. I was a bit shocked at how little development had gone into the area around one of the top tourist sites in the world, especially in comparison with Athens, though a guide did tell us a new museum was opening soon. The ugly steel fence was functional but hardly in keeping with the graceful style of the ancient Egyptians. At least food stalls were banned from inside so there was zero plastic waste. The only women workers I saw were litter pickers. All the harum-scarum camel-drivers, horse-whippers and trinket-sellers were blokes.

Tourist ticket prices wouldn’t subsidise much maintenance – at only E£120 (R100) per adult and E£60 (R50) for kids, entrance was cheap even for us shoestring budget travellers. It was only E£10 for locals. While I applaud the Egyptian authorities for keeping access affordable for all (unlike e.g. Table Mountain or Robben Island) surely humanity’s grandest monument deserves more preservation funds?

I was also surprised at the perfunctory security check. It was only a week since the Sinai bombing but there was no x-raying of bags, only a metal detector gate. Although there were busloads of Cairene school kids, we saw no more than 10 other foreigners the whole day. Very sad for Egypt’s tourist economy; wonderful for my energy economy.

We declined the offer of a pushy guide and rather went round slowly at my pace, with lots of rest stops, using Wikipedia.

Welcome to the Pyramids –

The Great Pyramid was built for the fourth dynasty Egyptian Pharaoh Khufu over a 10 to 20 year period concluding around 2560 BC. At 146.5 metres (481 feet), it was the tallest man-made structure in the world for more than 3,800 years. Originally, it was covered by limestone casing stones that formed a smooth outer surface; what is seen today is the underlying core structure.

the scale of which are truly mind-numbing

Khufu’s vizier, Hemiunu (also called Hemon) may have been the architect. It is thought that the Great Pyramid was originally 280 Egyptian Royal cubits tall (146.5 metres), but with erosion and absence of its pyramidion, its present height is 138.8 metres. Each base side was 440 cubits, 230.4 metres long. The mass of the pyramid is estimated at 5.9 million tonnes. The volume, including an internal hillock, is roughly 2,500,000 cubic metres .

Khufu is the oldest of the Seven Wonders of the Ancient World and the tallest

Based on these estimates, building the pyramid in 20 years would involve installing approximately 800 tonnes of stone every day. Additionally, since it consists of an estimated 2.3 million blocks, completing the building in 20 years would involve moving an average of more than 12 of the blocks into place each hour, day and night.

Sorry, what? The Big Green Truck is 10 tonnes, so that’s like hoisting 80 trucks’ worth up there every day? In 2500 BCE? And the colonisers still insist it was they who brought advanced civilisation to Africa??

The accuracy of the pyramid’s workmanship is such that the four sides of the base have an average error of only 58 millimetres in length.

The cute school kids were on an end-of-year day-out, begging for selfies with us and shouted at by teachers for imposing. We walked quickly away to escape bullying camel touts.

“We can conclude that although the ancient Egyptians could not precisely define the value of π, in practice they used it”.

The ships of the desert…

…being used as pleasure dinghies

The largest granite stones in the pyramid, found in the ‘King’s’ chamber, weigh 25 to 80 tonnes and were transported from Aswan, more than 800 km away.

Boys on all sides were blithely ignoring this sign

The basalt blocks show “clear evidence” of having been cut with some kind of saw with an estimated cutting blade of 15 feet (4.6 m) in length, capable of cutting at a rate of 1.5 inches (38 mm) per minute. John Romer suggests that this “super saw” may have had copper teeth and weighed up to 300 pounds (140 kg). He theorizes that such a saw could have been attached to a wooden trestle and possibly used in conjunction with vegetable oil, cutting sand, emery or pounded quartz to cut the blocks, which would have required the labour of at least a dozen men to operate it.

The stones were enormous, far too big for me even to consider clambering up onto

We were all a bit ecstatic to be here. Ruby couldn’t stop beaming. Even her VZ shades getting pickpocketed didn’t dampen her mood. Infamously inexpressive Zola was enthused enough to take loads of photos on his phone. It seemed almost miraculous to be here, together.


Sources cite either 118 or 138 as the number of identified Egyptian pyramids.

Wow 2

The Pyramid of Khafre is the second-tallest and second-largest of the Ancient Egyptian Pyramids of Giza and the tomb of the fourth dynasty pharaoh Khafre, son of Khufu, who ruled from c. 2558 to 2532 BC. 

The pyramid has a base length of 215.5m and rises up to a height of 136.4 m. It is made of limestone blocks weighing more than 2 tons each. The slope of the pyramid rises at a 53° 13′ angle, steeper than its neighbor, the Pyramid of Khufu, which has an angle of 51°50’24”. The pyramid sits on bedrock 10 m (33 ft) higher than Khufu’s pyramid, which makes it appear to be taller.

Wow ❤

The ancient Egyptian name of the pyramid was Wer(en)-Khafre which means “Khafre is Great”.

Wow 4

The shape of Egyptian pyramids is thought to represent the primordial mound from which the Egyptians believed the earth was created. The shape of a pyramid is thought to be representative of the descending rays of the sun, and most pyramids were faced with polished, highly reflective white limestone, in order to give them a brilliant appearance when viewed from a distance. Pyramids were often also named in ways that referred to solar luminescence.

He even came and joined in a cuddle without being asked 🙂

The Egyptians believed the dark area of the night sky around which the stars appear to revolve was the physical gateway into the heavens. One of the narrow shafts that extend from the main burial chamber through the entire body of the Great Pyramid points directly towards the center of this part of the sky. This suggests the pyramid may have been designed to serve as a means to magically launch the deceased pharaoh’s soul directly into the abode of the gods.

I’ve rarely seen her happier

There was a brisk chill wind blowing off the desert, so the skies were remarkably clear. But as we munched our snacks, the cosy sunshine became overcast, with a sudden looming dark blue rain cloud.

During lunch break the blue skies were overtaken

The Pyramid of Menkaure is the smallest of the three main pyramids of Giza. It is thought to have been built for the fourth dynasty Pharaoh Menkaure, son of Khafre, grandson of Khufu. The pyramid’s date of construction is unknown, because Menkaure’s reign has not been accurately defined, but it was probably completed in the 26th century BC.

by the wrath of the north

In 1837, English army officer Richard William Howard Vyse, discovered in the upper antechamber the remains of a wooden anthropoid coffin inscribed with Menkaure’s name and containing human bones. This is now considered to be a substitute coffin from the Saite period… Deeper into the pyramid, Vyse came upon a basalt sarcophagus, described as beautiful and rich in detail with a bold projecting corniche, which contained the bones of a young woman. 

Looked like biblical vengeance coming

Unfortunately, this sarcophagus now lies at the bottom of the Mediterranean Sea, having sunk on October 13, 1838, with the ship Beatrice, as she made her way between Malta and Great Britain. It was one of only a handful of Old Kingdom sarcophagi to survive into the modern period. The lid from the anthropoid coffin mentioned above was successfully transported to England and may be seen today at the British Museum.

“Unfortunately”? Classic British understatement for “catastrophically and unforgivably”. Likewise “successfully transported to England” means “looted from Africa”.

Just time for a solo portrait of beaming boy having one of the best days of his life

Menkaure’s pyramid was called Netjer-er-Menkaure which means “Menkaure is Divine”.

and a last glimpse of Menkaure’s tenacity

At the end of the twelfth century al-Malek al-Aziz Othman ben Yusuf, Saladin‘s son and heir, attempted to demolish the pyramids, starting with Menkaure’s. The workmen whom Al-Aziz had recruited to demolish the pyramid stayed at their job for eight months, but found it almost as expensive to destroy as to build. They could only remove one or two stones each day. Some used wedges and levers to move the stones, while others used ropes to pull them down. When a stone fell, it would bury itself in the sand, requiring extraordinary efforts to free it. Wedges were used to split the stones into several pieces, and a cart was used to carry it to the foot of the escarpment, where it was left. Due to such conditions, they could only damage the pyramid by leaving a large vertical gash in its north face.


The temperature plummeted as we hurried down to the Sphinx. My legs had had enough by now and I knew I was on borrowed time. We didn’t get up close but it was just perfect.

Wow. Did I say that already?

It is impossible to identify what name the creators called their statue, as the Great Sphinx does not appear in any known inscription of the Old Kingdom and there are no inscriptions anywhere describing its construction or its original purpose. In the New Kingdom, the Sphinx was revered as the solar deity Hor-em-akhet (Horus of the Horizon), and the pharaoh Thutmose IV specifically referred to it as such in his “Dream Stele“.


Residues of red pigment are visible on areas of the Sphinx’s face. Traces of yellow and blue pigment have been found elsewhere on the Sphinx, leading Mark Lehner to suggest that the monument “was once decked out in gaudy comic book colors”.

It really is all that

The Sphinx was probably the focus of solar worship in the Early Dynastic Period, before the Giza Plateau became a necropolis in the Old Kingdom…The lion has long been a symbol associated with the sun in ancient Near Eastern civilizations. Images depicting the Egyptian king in the form of a lion smiting his enemies date as far back as the Early Dynastic Period. 

We did it

A typical description of the Sphinx by tourists and leisure travelers throughout the 19th and 20th century was made by John Lawson Stoddard:

As close as my legs and my Nikon would allow

“It is the antiquity of the Sphinx which thrills us as we look upon it… The face and head have been mutilated… The mouth, the beauty of whose lips was once admired, is now expressionless. Yet grand in its loneliness, – veiled in the mystery of unnamed ages, – the relic of Egyptian antiquity stands solemn and silent in the presence of the awful desert – symbol of eternity. Here it disputes with Time the empire of the past; forever gazing on and on into a future which will still be distant when we, like all who have preceded us and looked upon its face, have lived our little lives and disappeared.”

Made it to the end of the road.

Ruby bought a tiny statue of the cat goddess Bastet as a memento and was given a bonus purse for her fluent Arabic greeting.

Turner and Bateson suggest that the status of the cat in ancient Egypt was roughly equivalent to that of the cow in modern India.

We celebrated with fresh juice: green sugarcane for them…

and pomegranate for me

We just got home in time. By 3.30pm it was already dark, gloomy and cold. Winter was catching us up.

The Eye of Horus was looking out for us

While we were away…

somebody had been getting into mischief!

On waking the next day, I couldn’t understand why my arms hurt even more than my legs. I’d walked further than I had in weeks, so why did I have such terrible PEM (post exertional malaise) in my elbow joints and wrists? Then remembered I’d taken about 150 pics yesterday…

That evening, Sampson met with Mr Hany Aziz, the Rooms Division Manager of the Marriott Mena House, officially one of ‘The Most Famous Hotels in the World’ and amongst Time magazine’s World’s 100 Greatest Places 2018. Mena House has been hosting visitors to the pyramids since 1886 – from Kings, Queens and Presidents to Arthur Conan Doyle, Agatha Christie, Frank Sinatra and Charlie Chaplin. Mr Aziz was extremely proud of the hotel’s history and full of fascinating stories.

Sampson and Mr Hany Aziz, GM of the legendary Mena House

who treated us to drinks and anecdotes in the Sultan bar

He started working there 30 years ago after studying in India, and was present throughout the glorious Oberoi era. From the celebrities he had welcomed, Mr Aziz singled out Barbara Bush, whom he loved because she brought her grandchildren, and Brooke Shields, whom he loathed because she was so snooty. It’s probably useful that his name Hany means ‘one who lives in happiness and tranquility’ or ‘chilled’ in Arabic – very similar to the meaning of Zola in isiXhosa.

For decades Mena House was the only dwelling in the area

He showed us a cabinet of photos including one of Kai-Shek, Churchill and Roosevelt in the garden in 1943, and another of Beghin, Carter and Sadat holding peace talks in 1979. Mr Aziz gave us a personal tour of old ‘Palace’ section of hotel, which was officially closed – new owners Marriott were about to carry out an extensive refurbishment.

He showed us the Montgomery suite

which boasted sparkly bronze basins,

an enormously wide bed,

exquisite mashrabiya panelling

and inlaid ivory antiques,

a stupendous view

and my favourite: doors that once belonged to “Egypt’s first feminist”!

Hoda Shaarawy (a.k.a. Huda Sharaawi) was Egypt’s first female lawyer and a force to be reckoned with. In 1919 she organised a women’s demonstration against British rule and led street protests during the Egyptian Revolution; in 1923, following the death of her husband, she famously cast off her veil in public and inspired a generation to do the same; she founded the Egyptian Feminist Union, which pressurised the government to make primary education compulsory for girls as well as boys and enabled female access to university. Married at 13 to a man 40 years her senior, she successfully fought for the legal age to be raised to 16. This video celebrates her extraordinary achievements.

Hoda’s doors were as sturdy and delicate, as spectacular and intricate as she was

Mena House is a treasure trove

of such architectural delights

with opulence everywhere you look

They even wrote a book about it

Mr Aziz gave me a copy of The Mena House Treasury from which I learned such gems as that John Travolta inaugurated Egypt’s first disco ‘The Saddle’ there in 1972. But his greatest gift came about by complete fluke: Mr Aziz insisted on taking a family photo of us on the freezing balcony of the Montgomery suite at the very moment the end-of-year corporate event outside had scheduled for their stupendous fireworks display:


It felt like they’d put it on as a surprise…

just for us!

(It was in fact for the hundreds of invited guests sitting at a banquet below)

I don’t think any of us will ever forget it

Thanks to kind Hub for capturing how awestruck we were

Apparently it costs $7500 to light up the pyramids for a wedding or a fancy event, so it doesn’t happen every day – how lucky were we to gatecrash?


What a magical night to remember

I was so shattered that night, even their booming DJ set didn’t keep me awake.

Eternally grateful

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Egypt 2: Cairo or ‘Walk Like An Egyptian’

Right, well, what with the relapse brought on by Euro winter 2017 and other challenges, I’m now a full year behind telling our story. Please pray I am granted time and capacity to catch up with the blog and make it home. If you have the patience to wait for the missing episodes, I have the persistence to deliver! It may just take a little while for me to get back into my stride…

It’s rare that having a chronic illness proves useful while travelling in Africa, but coming into Cairo last November provided one occasion. Just over a week before Ruby was due to fly into Egypt for the school holidays, we got up at 3am to drive into the capital. We have learned to do this as a matter of course to avoid rush hour traffic in all big African cities, but Cairo, second largest of all at more than 20 million, is renowned for its gridlock.

Driving from Alexandria on the desert highway the day before, a car had driven towards us going the wrong way in the fast lane. The articulated lorry in front of the truck had swerved, and Sampson had only avoided the lorry with his juggler’s instinctive flinch of the wrist. I was exhausted just being on duty in the passenger seat judging the speed of heavy duty vehicles zooming towards us every time Sampson attempted to overtake from the right hand lane.

There were some friendly faces amidst all the uptight uniforms: Major Hassan and Capt Sharif waived a traffic fee “You are welcome to Egypt”

That evening Zola had cooked because I couldn’t stand up to do it. Just as we were settling down after supper, the police came rapping on the door and told us to move on. The boys dragged themselves up to lock down and as we were about to set off I rolled off the bed and put my foot into Monte’s worst-ever pile of diarrhoeary poo. Aarrgh. Zola was an absolute star and mopped it up with half a roll of kitchen towel. I’d like to put on record how grateful I am to this day.

Big Reg sidled along to the next turn off and hid in the dark for a couple of hours’ rest before setting off on the 6 lane highway. When an aggressive Shouty Man in a booth at the second toll plaza took E£100 for a E£20 ticket and demanded another E£500, Sampson pulled over and came back to my bed to ask for diplomatic assistance. I was glad I’d slept in my T’ai Chi clothes in preparation for just such an eventuality.

I put on a headscarf and staggered out carrying our folder chock-full of documents, looking as pale as death. It was 4am and about 12˚C; I was so cold and in so much muscle pain, I needed help to get down the ladder and Sampson supported me on his arm up the steps into the booth. Looking extremely nervous at the prospect of me passing out in his office, Shouty promptly returned the E£80 change. I gracefully acknowledged his generosity with a nod. I hadn’t had to say a word.

The huge Cairo highways were busy even through the small hours. I sat bundled in a sleeping bag in the passenger seat. “The pyramids should be somewhere on our right” said Sampson, peering into the dark, looking in vain for triangles on the horizon. “There!” I exclaimed, as the grey mass against the skyline suddenly resolved itself into the right shape, dwarfing the tiny tower blocks in front. It was the first time on this journey I’d ever seen anything so huge you could miss it.

Cairo by night. My brain-fogged memories are mostly as blurry as this pic.

Big Reg headed for the diplomatic area, and squeezed into a space at the end of the SA Embassy’s road ready to get some sleep before it opened. But still there was no rest. Peremptory policemen kept knocking on the door. The second time I got up and confronted the young officer with my barefaced barely-covered-grey-haired-weary-old-mother-ness.
“Er…” he said, a little sheepishly, “Do you have a licence for this truck?”
“Yes we do,” I replied “but we’re sleeping now. Goodnight.” And shut the door.

The. Constant. Sleep. Interruptions. Were. Killing. Me. They were even beginning to take a toll on Sampson. Slowly but surely, getting up two or three times every night to take Monte for a wee was wearing him out; but at least he could get straight back to sleep. He’d bought a piece of wood as a ramp to help the puppy get in and out of the truck from the driver’s side rather than slamming the side door next to me, but even so I was woken every time and rarely able to drop back off within an hour.

At dawn, when Monte got restless, Sampson would take him for a walk and I would try get another hour’s kip to ward off the worst of the pain. After a couple of weeks of this pattern, I was beginning to get desperate. Without solid sleep, I could not begin to recover from the crossing from Greece; the exhaustion of that was being compounded by the torture of this long-term sleep deprivation.

On top of that was the oxygen deprivation. By our third morning in the most polluted city in Africa, the lack of fresh air and sleep was making me feel deathly ill. Those first 15-30 minutes on waking were sheer hell. Coming to consciousness gave a flight or fight shock to my system. Both noise and light became cruel. Nausea and pain everywhere, fingers, joints, back. But why the soles of my feet so tender? And. Can’t. Think. Speak. Striaght. (sic)

On standing, my heart was racing so much that it was becoming hard to do T’ai Chi. Just getting up, washing and completing 2 or 3 short forms would consume the whole morning. My functioning day time hours (when I was capable of teaching or writing) shrank to 2 in the afternoon. When Sampson complained he was feeling tired, I had to point out that it wouldn’t be cool to whinge about achey legs to a person in a wheelchair when you’d decided to stay up all night dancing. “Please don’t complain to me about tiredness, when I’ve been reduced to horizontal.

You chose to keep the dog”.

Sampson taking strain

He came back from the SA Embassy with an Afrikaaner and an Egyptian woman, business partners Frans Visser and Abeer Elshemy. They were so friendly and thought they might be able to help with the truck licence conundrum after Embassy staff were stumped. Frans told us he has learned a lot about jumping through Egyptian bureaucratic hoops and put Sampson in touch with his legal advisor.

Vivacious Abeer had us in fits of laughter describing how her puppy ate her Raybans. She was in the middle of her second bout with breast cancer, a few months into chemo with a major op due in January. She told me her baby niece was inspiring her to survive it. One year on, I’m thrilled to say Abeer is still going strong.

That Thursday night we got to bed at 7pm and up again at 3am to travel an hour south east on the ring road around Cairo to arrive at Tractafric partner garage, global giant Manufacturing Commercial Vehicles (MCV). With 6000 employees in 24 countries worldwide (including UK and SA) and 1000 in Cairo alone, MCV leads the continent in Mercedes bus and truck sales.

Big Reg arrives at the enormous MCV headquarters in Cairo

The hub building was designed to resemble a giant Mercedes sign from above

Check out the Google Earth image!

Weekends flow differently in Muslim Egypt: Thursday night feels like Friday night, Friday feels like Sunday and Saturday is like a Saturday in Fish Hoek: everything shuts at noon.

Friday emptiness

Parking off outside MCV

The normally bustling industrial area was so quiet that Friday and empty apart from passing market lorries loaded with vegetables. I was still not up to walking but the boys got the bikes down for some exercise. Lucky was getting jealous. Stuck in the cab watching Sampson playing outside with Monte, she started mewling piteously. FOMO cat. When he started cycling big circuits with the puppy, trying to tire him out, she joined in!

When Fish Hoek Primary had finished writing, they sent papers for us to print off and Zola started his exams. I was amazed he was applying himself so diligently, considering his slackness during the transition from Greece to Egypt. But his curious mind never ceases to delight me; this week he asked for definitions of the following words: “quintessential” “promiscuous” “supercilious” and “omniscient”.

As Zola got down to exams, Sampson got down to cleaning the kitchen in honour of Ruby’s arrival. At the end of her first year back in formal school, I was proud of Ruby’s excellent exam results in English and History, especially as her favourite subjects are Maths and Science!

Counting off the days till Ruby’s arrival

It was Ruby who told us about the appalling bomb attack in Sinai. This “deadliest attack in Egyptian history” killed 311 people and injured another 122 during Friday prayers at a Sufi mosque. The government declared 3 days of national mourning.

It went a little way towards explaining the police paranoia.

* * *

Sampson set off at 5am for his jaunt to Alexandria with Frans’s friend Lionel. After three hours by car to Immigration, he waited 45 mins for lawyer’s assistant 21 year old Mina, who pushed her way to the front of the queue of men. Within 15 mins, she had obtained a stamp in his passport confirming the extra 2 months’ residence permit that Consolidated Freight Services had said was impossible to extend before the expiry period. (We have to admit to feeling a bit disappointed in CFS; they came highly recommended, but as we were charged top dollar for their services, we felt they should have made more of a fuss to sort this out in the first place.) THANKS FRANS!

After his triumph at immigration, Sampson spent the night at our kind friend Chef Karim’s flat. Karim’s father and brother came to visit and they ate a supper of sausage and egg and bread and cheese together in circle.

Thanks again to the Elsadani clan!

While Dad was away, Zola did his last exam then cooked. We hosted visitors: dear Meriam from the MCV marketing department, and Mr Roger Maher, Director of Export Sales, who kindly agreed to sponsor a vital service for the Big Green Truck. At 4.30pm it was dark. The northern hemisphere winter was catching us up.

Roger Maher, Export Sales Manager and Meriam Al Nokrashy Anwar, Senior Marketing Specialist

Wednesday 29th November 2017 was one of the most heavy going of trip so far for the Sampson family: all of us were pushed beyond our comfort zones. While 16 year old Ruby was taking three flights alone from Cape Town, Sampson was jumping through bureaucratic hoops in Alex  – so Zola and I had to handle the garage service in Cairo.

Thank God Monte slept till 10 past 6. After T’ai Chi to thaw my stiff limbs, Zola locked down and I girded up my courage. It had been years since I had last driven the truck. But with Zola in the passenger seat giving extra muscle to help me change gears, I managed to reverse Big Reg out of the lot, around a huge black puddle of dumped water and engine oil,  then drive triumpantly into MCV. It was worth the PEM pain in my arms the following day for the wide-eyed GOBSMACKEDNESS of two dozen greasemonkeys milling at the entrance who’d never seen a woman drive a truck.

Within an hour there were 8 guys checking brakes and nuts, adding radiator coolant and changing the engine oil. In between starting the engine a few times, I got chatting to Mr Diaa and found out he was emigrating to Australia the following month “for his family”. We were happy to hook him up with friends of ours in Melbourne who also have a new baby, in case he needed advice.

Full MCV team super efficient service underway

complete with oil change

Thanks to the lovely Mr Diaa Gamal and Mr Mohamed Ryad

Zola and I tackled the last of the spring-cleaning while keeping up with Sampson and Ruby in transit via Whatsapp. Her Ethiopia Airlines plane from Jo’burg was 40 mins late boarding; this was worrying as she only had 2 hours’ change over time in Addis…

The MCV team brought us mint tea at elevenses. The supersweet caffeine kick sure helped Zola whizz through those chores!

Monte’s self control was getting better; he did a couple of pees on the floor but was managing to poo outside. On our final walk around the MCV block, he was skippety-skipping alongside of me and I had to admit I was falling in love with him despite everything.

Meanwhile Sampson had been out at 6am to be first at the traffic dept, and meet a ‘consultant’ ex-worker Mohamed Ahmed, 70 years old with a crutch. Sampson described the fixer as “A fat Ken Dodd: bad teeth, bulgy eyes”.

First he had to get a pass issued to get inside the port. It took 3 hours, 10 processes and 5 copies of 4 different documents: licence, passport, visa and Arabic explanation ‘from the Embassy’. At 11am he was still not sorted and the office was due to close at 12. Sampson queued outside three differnet windows twice, then inside. When it started looking like it was not going to happen today, Sampson reported:
“Mohamed just had a complete hissy fit. He went inside the office to beg one guy to get us into the port in time. When arselicking didn’t work he started crying. He looked like something out of the Simpsons, Itchy and Scratchy going nuts. Some of it was real I reckon, but some was exaggerated to show he was earning the money.”

At 12 on the dot, they were told they needed one more copy, and Karim saved the day by running about like a headless chicken to get it. Finally Sampson had a pass, only to be denied entry to the port by a security guard who said he had to get a taxi to another gate because he was a foreigner.

While keeping me updated on the drive through, Sampson drily observed that ‘Walk like an Egyptian’ often meant ‘confidently headfirst into traffic’:
“People here don’t seem to have any fear or concern for their safety – either the cars will pause to let them pass, or they will get hit. Either way, it is the will of God, insh’allah, and their fate is in his hands alone.”
A mark of great faith it seems.

Inside the traffic department in the port, the process to extend the truck permit that Sampson had assumed would take an hour, took another 2 and a half: a Kafkaesque obstacle course of 15 procedures, involving 10 different men in 5 offices in 2 buildings, paying 3 times, E£560 in total. The fixer fee doubled it. The carnet had to be approved, photocopied, stamped and signed by 3 different people, including the Head of Traffic who was dressed like a General. There were no computers at all. When the process was completed, Sampson waited another half an hour for the printed licence card to be laminated.


Thanks to Karim, they celebrated obtaining the licence with a free meal in his former restaurant. The unecessary-if-communication-done-properly-in-the-first-place licence extension cost about extra R1000 in total, but 2 days and more than a few grey hairs.

Sampson then had to wait 2 hours for a 3 hour train back to Cairo because all the early ones were full due to the public holiday the next day. The station was filthy, but the train was glorious, only £E45 in 2nd class with a reclining seat; moreover it left on the dot and arrived on time. He took another hour in an Uber directly to the airport, then waited 4 more hours for Ruby to arrive, mostly sitting outside because of the high security alert following the Sinai bombing.


I’d crashed after my shower, aching all over from standing up so much of the day. I woke up when my phone died with a buzz at 2am and was panicking to get it plugged back in because Ruby was supposed to have landed at 1.20 – what had happened? I Whatsapped Sampson and got no reply; with my heart in my mouth, I called him and Ruby answered… It was the very moment she’d walked out into his arms, such was the delay. I heard Dad in the background “How did she know??!”

Beyond relieved, I messaged the good news to my Mom and best friend then lay down and listened to some calming Cabin Pressure but didn’t sleep till they got back at 4am and I heard her voice. She ran up the ladder, hugged me in a bear clasp, squealed in delight to see the puppy and pounced on him. Monte was so overwhelmed, he peed himself!

The reunion was joyous… (check the Mrs Ball’s chutney in hand)

Not least because of the many presents Little Ms Christmas brought with her…

Ruby arrived on the Islamic holiday of Mawlid (which in Arabic means the birth of a child or descendant), a celebration originating in 11th century Egypt marking the observance of the birth of the Prophet Mohamed PBUH. We hadn’t seen her for 5 months since she visited us in France.

When finally Sampson, Zola and Monte crashed out, Ruby cuddled up next to me on the bed, talking nineteen to the dozen till she wore herself down. As we lay in the dark, her face at my chest looked just like my baby girl though I could hardly get my arms around her, and she calmed the same as I stroked her hair. We said goodnight as the morning call to prayer rang out.

There is a special peace that only comes when all four of us are together in the truck

Like her Gran Joy, Ruby loves giving so much, it took some persuading to get her to hold off unpacking everything until the next day…

Sampson got his much needed hair clippers

But Zola definitely did the best:

Nana had sent him a whole new wardrobe

and Ruby had picked him up a whole new library

Zola was absolutely thrilled

as was I to see them both so happy

Finally the whole family was reunited: both Big Reg and Ruby had returned to the fold. Now we just needed MCV to sign us off as safe and ready to embark on the east coast leg of the trip.

Next morning took this pic reflected in the mirrored frontage of MCV. Altogether again at last!

Over the next few days the crack MCV team got down to work: Diaa Gamal, Mohamed Atila, Ahmed Said, Aboud Fathie and Ahmed Rifat

Thanks to the wisdom and ingenuity of expert Chief Engineer Mr Nader Selim

they even got the dodgy spare wheel off

and sourced a new rim for us!

Monte loved his morning exercise doing a circuit of the MCV workshop

After the main service

Big Reg went to the body shop of Mr Abdelhamid Ahmed Algneedey

who plied us with anise tea while his team worked into the night to finish the welding

MCV gave us a full service, changing all fluids (engine oil, gearbox, transmission fluids in diffs and transfer box, hydraulic fluid in engine as well as coolant in radiator). They greased all parts, adjusted brakes and tick over speed to stop constant stalling. They sourced a new rim for our spare wheel, while our cracked rim was welded and kept as a spare. They removed the air compressor and found the leak, fixed the oil dipstick, replaced the water hoses on the heat exchange plate and bought a new fuel line to fit new filters.

The body shop welded the hatch, the tool box, Zola’s unicycle and fixed the side gutter ripped down by a tree, fixed hinges on roof box and added an all round waterproofing strip. They checked our leaking injectors and added silicone, gave us two new metal window winders and a spare plastic one. They also donated a dozen empty containers for onward oil collection.

We are so grateful to the team at MCV for their generosity and diligence, especially our friends Mr Nader and Mr Abdelhamid.

We are eternally grateful for your kindness

What more can we say about MCV’s level of commitment to excellence but:


Posted in 21 Egypt | Tagged , , | 6 Comments

M.E. Too or Why I am No Longer NOT Speaking to Doctors about Chronic Illness

Three weeks ago, I met the first doctor in 25 years to believe me. She is a gynaecologist and I went to consult her about my intense peri-menopause rather than my autoimmune condition. As symptoms overlap however, I had to explain my history. Dr A knew nothing about Myalgic Encephalomyelitis, but asked me to spell it for her and tell her about it. She was open to my knowledge, interested and supportive.

This experience of being treated with compassion and respect by a medical professional came as a profound shock.

How different my life might have been if it was always like that.

* * *

I was a girl from Coventry, UK, who never had a day off sick in 7 years at senior school. My dream was to do drama at college, but the drama that dominated my life there was not the thespian type I’d anticipated.

Snapshot 1990: The week after I get the damning results of my student union sexual harrassment questionnaire revealing the scale of date rape at Oxford University published in a national newspaper, walking through the quad, feeling like the stones themselves hate me.

Medical intervention 1: The doctor diagnoses glandular fever and EBV and recommends I drop out and do my finals the following year. I say I don’t want to spend a single second longer in that place than I have to, so will push on through. He shrugs.

* * *

Snapshot 1992: Halfway through the happiest year of my life, travelling through Asia, I’m sitting on a bed in a dodgy hotel in Indonesia feeling wiped out. All seven of us on the trek have been struck down by giardia. I am the only one who never recovers.

Medical intervention 2: After six months of diarrhoea, a battery of tests and a barium enema, the hospital tells me there’s nothing wrong with me besides IBS. This despite a baffling array of symptoms from purple lesions on my thighs to falling asleep at the table. I resolve to dismiss my unwellness the way the hospital has dismissed me: press on, ignore it and hope it will go away.

* * *

Myalgic Encephalomyelitis was first identified by Dr Melvin Ramsay following an infectious epidemic amongst 292 staff at Royal Free Hospital in 1955, mostly nurses. There had been other outbreaks, the most notable affecting 198 people at the Los Angeles County General Hospital in 1934 and 488 in Iceland around 1948.

In 1970, the year I was born, McEvedy and Beard, two male psychiatrists reexamined the Royal Free case notes and reported that “there is little evidence of organic disease affecting the central nervous system… and epidemic hysteria is a much more likely explanation…The data which support this hypothesis are the high attack rate in females compared with males” McEvedy CP, Beard AW. Royal Free epidemic of 1955: a reconsideration. BMJ. 1970 Jan 3;1(5687):7–11

McEvedy and Beard came to this conclusion without interviewing any of the patients themselves, many of whom remained too ill to work decades later.

* * *

Snapshot 1993: Standing crying outside the supermarket because I don’t have the strength to walk home with 2 bags of shopping. I’m 23.

Medical intervention 3: List of symptoms for my weary young GP: sleeping 14 hours a night; waking to find clumps of hair on my pillow; constant nausea and dizziness. Worst of all, can’t think straight; struggle to read, can’t write. When I say that I couldn’t get a lump of blu-tack off the wall yesterday because of the pain in my hand she takes a deep breath and says, with obvious reluctance, “I think you may have M.E.”

What? This was Before Google, so I went to the library and found a book, written by a medic with M.E. There it was: a comprehensive list of symptoms. I had every single one of them, even those I hadn’t realised were connected, like noise and light sensitivity. It explained that M.E. was characterised by ‘post-exertional malaise’, pain in muscles 24-48 hours after doing even light exercise. It told me that the only way to avoid it was to do half as much as you thought you were capable of. Except this was impossible, because your capacity and limitations shifted daily.

The book said 10% of post-viral fatigue patients recover spontaneously within a few years; those that don’t reach a plateau of symptoms between mild and moderately affected; about 25%, the severely affected, end up bedridden in darkened rooms.

Even though the prognosis was bleak, I was ecstatic. It was a huge relief just to know I wasn’t going mad and I wasn’t alone. But if this disease was already documented, why on earth had it taken 18 months for someone in the medical profession to mention it to me?

* * *

By some cruel twist of fate, the person most responsible for the gross misrepresentation of M.E. is psychiatrist Dr Simon Wessely, also a graduate of University College, Oxford.

Sir Simon Wessley took McEvedy and Beard’s patronising arrogance to the next level. Despite the fact that the WHO had formally classified M.E. as a neurological disorder in 1969, Wessley deliberately set about recasting M.E. as a psychosomatic condition called ‘Chronic Fatigue Syndrome’, a term adopted by the Centre for Disease Control in the US in 1988 following the Lake Tahoe epidemic of 1984 which affected 175 people in Nevada and infamously inspired the tabloid phrase ‘Yuppie Flu‘.

Throughout the 80s and 90s, the prevailing narrative was either that people with M.E. (pwME) were either whingeing workaholics suffering burn-out or lazy, benefit-scrounging malingerers. Of course if you were female (and the vast majority of us are) there was a third option that had been a stalwart since Victorian times: we were all hysterical hypochondriacs.

This brilliant summary of Dr Wessley’s contribution to M.E. research (or the derailing of it) by the heroic Margaret Williams is well worth reading.
TW: pwME may crash from sheer outrage. Here’s a sample quotation from Wessley:

“Most CFS patients fulfil diagnostic criteria for psychiatric disorder….Other symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal and neurological. Do any of these symptoms possess diagnostic significance? The answer is basically negative…. It is of interest that the ‘germ theory’ is gaining popularity at the expense of a decline in the acceptance of personal responsibility for illness…. The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ”
Psychological Disorders in General Medical Settings Ed: N Sartorius et al Pub: Hogrefe & Huber, 1990

Williams summarises:
“Not only has he consistently denigrated people with ME, but he has dismissed, ignored or ridiculed the substantial body of international biomedical evidence published over the last 30 years that proves him wrong… it worth noting that the Medical Research Council itself now acknowledges that there is evidence of immune dysfunction and inflammatory mechanisms in the brain and spinal cord of people with ME.”

* * *

Having mild M.E. is like living your life on a tightrope. You advance gingerly through each day, you look ahead constantly, you weigh your every step. One wrong move could take you down. You are forever dodging the curveballs being thrown at you: a bug, a period, a shock. It’s the ultimate balancing act.

Having moderate M.E. is living your life floundering in the safety net, trapped by pain, an infinite struggle to get back on your feet.

Severe M.E. is lying smashed and broken on the floor, forgotten in the shadows below.

The people watching only ever look up and see the tightrope walkers smiling effortlessly under the lights.

It doesn’t look dangerous.

* * *

The Wessely School’s blurring of the distinctions between people suffering profound fatigue and debilitation as a result of clinical depression and people with M.E., an organic disease resulting from a malfunctioning immune system, has led to GPs insisting on inappropriate and detrimental treatment advice.

Wessely-sanctioned Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are the only treatments currently offered by the NHS to M.E. patients. Yet the results of the enormous PACE trial, published since 2011, ‘proving’ their effectiveness have been thoroughly discredited.

Super-heroic efforts of an international cohort of citizen-scientists led by Californian investigative public health journalist Dr David Tuller have exposed egregious scientific shortcomings and manipulation of results. But open letters 2015-18 to The Lancet and Psychological Medicine signed by more than 100 scientists and 50 ME charities from countries around the world asking for an independent reanalysis of the data have yet to receive a response.

Where CBT has shown to be ineffective, GET has proved significantly counterproductive in many cases, with post-exertional malaise triggering severe relapses. Unsurprisingly this has caused depression and despair for many.

Dr David Marks, Editor of the Journal of Health Psychology has concluded:
“The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the PACE trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”

As the Independent has noted in an excellent summary of the history of ME so far: “Throughout it all, patients were depicted as dangerous militants in the media for criticising the trial, even though they turned out to be vindicated.”

* * *

Snapshot 1994: Trying to fill in 45 page application for UK disability benefit. ‘Fit for work’ criteria: can you sit upright in a chair? Tick yes or no. No boxes to distinguish for how long, or if sitting up in a chair one day would mean you had to lie down the next. I give up. I’m too exhausted and overwhelmed to face the booklet, let alone a long fight for state support. My mom decides it’s time to send me somewhere warm to convalesce.

Medical intervention 4: My aunt in Johannesburg hasn’t seen me since I was 12 and doesn’t know me from a bar of soap. She is aghast to see me sleeping so much and takes me to her doctor, an overconfident man of 30 who doesn’t listen and proscribes Prozac. I refuse to take it. I know I’m not depressed – my body just can’t handle the twin challenges of a malfunctioning immune system and a cold climate.

South African sunshine saves me. The energy my body doesn’t squander on trying to stay warm it can put into building up my strength. Slowly but surely, I become more resilient.

* * *

Snapshot 1994: Sitting on the toilet seat retching from the effort of walking from bedroom to bathroom. What is going on? How can increasing my days working on a market stall from two to four a week have made me relapse to such a state? I can hardly stand upright, I’m in constant pain and a blurry haze. My throat feels like I’m swallowing through knives and I’m drenched in sweat whenever I get cold.

Medical intervention 5: The only way for me to stay in SA is to get a medical visa. As a condition of my application, I am obliged to attend a support group at the Chronic Fatigue Clinic at Groote Schuur Hospital in Cape Town. The fact that it takes place in a cold draughty room, on hard wooden old school chairs under harsh strip lights demonstrates the complete lack of understanding of the doctors convening it.

Sitting there, surrounded by other people patently way too ill to be upright, is sheer torture. We are coaxed to share our chronically confused stories so that the facilitator can confront our delusions. As my muscles go into spasm, I feel my energy ebbing away.

A two hour session in such cruel conditions lays me out for a week. It’s insanely counterproductive. As soon as my permit is granted, I gratefully stop going.

I don’t speak to a doctor about M.E. for the next 20 years.

* * *

Snapshot 1995: I am sleeping up to 20 hours a day. I have lost nearly a third of my body weight. My parents have to help me wash, and eat. I struggle to turn over in bed or lift a cup. After cleaning my teeth, I can’t use my arm. Occasionally my mind rises briefly from its zombiedom and looks around horrified, before helplessly sinking back down into brainfog so dense it’s almost suffocating.

* * *

Of the two years I spent mostly bedridden, I only spent 6 months ‘severe’. I am not qualified to describe how it feels like to live with very severe M.E. Rather read the devastatingly moving book A Girl Behind Dark Glasses by Jessica Taylor-Bearman, and marvel at the effort it cost her to share her experience with you.

For me, severe M.E. was like getting trapped in ‘The Sunken Place’. (If you haven’t seen Get Out, do yourself a favour. Spoiler alert: the psychotherapist is the baddie in that too.)

Life with moderate M.E. – with apologies to those who have not seen Stranger Things – is like existing in the ‘The Upside Down’, that parallel universe to the bright sunny place where everyone else lives. You struggle relentlessly through a desolate, decaying, lonely wasteland calling out in vain to the people on top. They can hear you, but they can’t see where you are.

If you’ve met someone with M.E., they were mildly affected. ‘Mild’ M.E. is anything but. It means capacity is reduced by up to 50%. They might still work but not a lot else. They tend to cry off attending meetings and birthday parties. They are easily dismissed by doctors and ignorant comedians. Having mild M.E. is like being Lady Pole, in Jonathan Strange and Mr Norrell, condemned to a hidden double life in Lost-Hope, always exhausted and unable to explain it coherently to anyone.

It’s unlikely that you’ve met someone with moderate M.E. They rarely leave their houses, and if they do, they can’t afford to waste energy chatting.

You won’t have met anyone with severe M.E. They rarely leave their beds.

* * *

Snapshot 1995: It’s another Friday night. I lie on my bed in the darkened room and wonder when I will begin to despair. It has been 3 years since I fell ill. How am I ever going to get strong enough to get a job, meet a soulmate, have a baby? How long is it going to take?

* * *

In 2017, after 6 years bedridden, Merryn Crofts passed away 10 days after her 21st birthday. She lived in unimaginable pain and died due to infection arising from intravenous feeding after M.E. left her unable to swallow or digest food.

I beg you to read Clare Norton’s description of her daughter’s existence. She concludes: “what other illness gives the least attention to the worst affected?”

Emily Collingridge died in 2012 aged 30 subsequent to some brutal treatment in hospital. She had been ill since the age of 6 and wrote a book Severe ME/CFS: A Guide to Living in 2010.

The first person to have ME on her death certificate, Sophia Mirza, died in 2005 after 6 years’ illness aged 32, when she suffered a massive relapse after being forcibly sectioned and locked in a psychiatric ward for 2 weeks despite the desperate efforts of her mother to protect her.

These words are from Lynn Gilderdale‘s mother Kay, a former nurse, who wrote this open letter following her acquittal of murder after assisting her daughter’s suicide in 2008. Lynn was 31 and had been severely ill since the age of 14:
“I wish with all my heart that I knew at the start of Lynn’s illness that graded exercise at this acute stage causes further damage. She could have been spared seventeen long years of unimaginable suffering if we had done the right thing at the beginning and listened to what she told us.”

In 2009, Dr Nancy Klimas, Professor of Medicine and Immunology at the University of Miami was quoted in the New York Times: “I hope you are not saying that (ME)CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose… I would rather have HIV.”

* * *

The most savage irony of all is that in 2012, Wessley was awarded the inaugural John Maddox prize for his “courage” in the field of ME/CFS and Gulf War Syndromes for “standing up for science”: The prize rewards individuals who have promoted sound science and evidence on a matter of public interest, with an emphasis on those who have faced difficulty or opposition in doing so”

His courage in the face of all those pesky patient activists who, despite Wessely’s refusal to acknowledge the biomedical evidence of more than 9000 peer-reviewed papers over the last 30 years, continue to insist their disease is real?

This breathtaking hubris has exacerbated the suffering of hundreds of thousands of people, predominantly women and children, who have been forced into CBT and GET in order to access state grants and medical insurance, despite evidence that this therapy can significantly worsen their conditions.

* * *

I was so fortunate not to remain severe. I wasn’t regularly losing consciousness, needing vital signs or feeding tubes checked, so I could choose to exist without consulting doctors. Just about.

Medical intervention 6: I have zero confidence that the Chinese doctor my mom’s yoga teacher has insisted we visit will make any difference to my situation. Dr Lin’s bedside manner is non-existent and the acupuncture is excruciating. But there’s an immediate impact on my sluggish organs. As Mom and the yoga teacher carry me out to the car, Dr Lin tugs my cardigan down over my ice-cold sweaty back. I feel his compassion.

I start going for needles 2-3 times a week and Dr Lin encourages me to learn T’ai Chi, a gentle way to stoke my energy and keep me limber. I attend my first lesson on an evening at the height of South African summer in a full length winter wool coat. I can’t stand for more than 2 minutes at a time. Slowly, carefully, I learn how to pace myself and build my wasted muscles back up without paralysing post-exertional malaise.

Snapshots 1995: The gratitude I feel the first time my parents take me to Noordhoek beach and support me to stand and breathe the wind. The pride I feel the first time I have enough spare energy to wash up after supper. The euphoria I feel the first time I drive out alone, to the local supermarket. I stand awestruck in the aisles and marvel at my freedom.

* * *

In 1996, when I got back on my feet, I felt like a rescued Thai child, miraculously released from the sunken cave. A part of me wanted to shout about it from the rooftops. But mostly my urge was to move on and never look back. I wanted to party. I wanted to travel. I wanted to have some fun before my 20s disappeared altogether. I didn’t want to talk about M.E. anymore. I wanted to live.

Snapshot 1997: I’m in love with a wannabe comedian who juggles at music festivals for a living. Our friends know I don’t drink and weirdly carry a tupperware of padkos everywhere, but they have no idea how compromised my health is. They only ever see me out at weekends, dancing, chatting. No one realises I spend the whole week in between lying down recovering.

I feel guilty about that now. What if I’d committed to consciousness-raising while I was strong enough to? If I’d focussed on that instead of starting a business and a family? But I needed to get independent, I needed to earn. And I was living in a developing country with far more pressing local concerns of mass poverty, drug addiction and domestic violence. What was the point choosing such a losing battle as chronic illness awareness? I rather fought where I thought I could make a difference.

* * *

Snapshot 2000: My 30th birthday. I’m functioning at about 60% of pre-illness energy levels and have my metabolic management down to a fine art. I maintain a stricter diet and more carefully calibrated exercise regime than many professional athletes; it just allows me to hold down a job. I work from home, and the role is far less challenging and less lucrative than my education prepared me for, but at least I can support my family.

People with M.E. are being persecuted by doctors, teachers, family members – the very people supposed to look after them. Imagine someone with late-stage cancer being told to pull themself together and stop pretending to be ill. Imagine someone with congestive heart failure being forced to do an exercise program to access state benefits. Imagine a diabetic child too sick to go to school being forcibly removed from home and put into psychiatric care. This has been happening to the chronically ill for decades. It’s happening now.

Snapshot 2001: My distrust of bullying doctors and dislike of exhaustingly overlit, noisy hospitals leads me to choose a home birth. I haemorrhage afterwards and need two transfusions a week later, but our baby girl is fine. My husband gets an hilarious comedy routine out of it.

Chronic illness is cruellest when it effects children. Before they get a chance to really stretch their legs or their brains in this life. M.E. is the leading cause of long-term sickness absence from school for both learners and teachers. Yet, thanks to Wessley’s biopsychosocial model, over and over again, children with M.E. are categorised as school phobic. Worse, their parents get accused of child abuse and Munchausen Syndrome by proxy, when all they are trying to do is protect them from harm.

The horror of this is so great it’s currently beyond my capacity to express it.

* * *

Of course, the big difference between now and 25 years ago is the world wide web. In the early 1990s, when I was first confined to bed, I felt so utterly alone. Now, the internet is the safety net for the massive spoonie community and no one with chronic illness needs to feel isolated.

I know post-Brexit post-Trump feeling is jaded and cynical about Twitter and the way it has empowered hate-mongering but to spoonies, social media is a vital source of loving kindness and life-saving empathy. It has transformed my experience of chronic illness. The flashes of recognition I get from seeing aspects of my daily reality mirrored by people all over the world are so comforting. It’s a joy to share symptoms and swap memes about brain fog.

I am so grateful for the perspective granted me by the extraordinary wit of grounded Dutch ballet dancer Anil van der Zee whose devastatingly understated one-liners should make him a YouTube megastar. The defiant pluck of Brit Stroopwaffle, who doesn’t have enough energy to swallow but determinedly blogs about access to plastic straws. Polyglot Nevra in Pakistan who is 23 and 34kgs but still made it to her brother’s wedding. The Swiftian brilliance of Australian Kaitlyn Plyley. And most exquisite of all: the diamond-forged prose of Jamison Hill as showcased in the New York Times.

These folk I have never spoken to directly and will never meet, understand aspects of my life more intimately than most members of my own family. They are companions on my journey. Their strength sustains me. Their humour and their grace hold me up.

They have taught me so much already; not least, to start taking this thing f’ing seriously.

* * *

Snapshot 2010: As I approach 40, I feel I’m on the slippery slope again. Even though I work mostly from home and mostly in the summer, my capacity is shrinking. I’m taking too long to do simple admin, I can no longer multitask and faciliating lays me out for days. It’s time to quit before I start letting my team down badly. But how can I survive without a wage?

* * *

Of course, the danger of the Instagram moment is that a snapshot in sunshine on a good day can completely skew the image of your chronic condition. We need to apply the radical self-loving spirit of campaigns such as Slumflower Chidera Eggerue’s #saggyboobsmatter. Like less-than-media-perfect bodies, people with chronic illnesses also need acknowledgement that their less-than-media-perfect lives can be beautiful. #saggylivesmatter.

Like Jayletay, we need to post pictures of our daily struggle and our pain. Putting on a brave face and putting our best foot forward has not historically helped people with M.E.

We also need to be allowed to document the harsh realities without being censured for the modern crime of rejecting #positive thinking. Sugarcoating our experience for those who find it difficult to swallow does not help invisible illness be seen.

We must do it – to school doctors and policy-makers, to show solidarity with other sufferers and, most of all, to ensure the ‘mild’ know what they’re risking when they push their energy envelopes.

Not only do people with M.E. have a lower quality of life than MS, cancer and stroke patients, reduced life expectancy and higher rates of suicide, they tend to be treated like dirt by the medical fraternity. It is an insult to spoonies to suggest we are not thinking positively enough. We are by definition the optimistic ones, because we are still here.

Despite feeling like death every day. Despite constant pain, nausea, dizziness, brainfog and exhaustion; in the face of disbelief, ridicule and loneliness and without any effective medication or any prospect of it in the near future.

The people who deserve awards for bravery in the face of scientific controversy? All of us who Keep Chronic But Carry On.

* * *

Snapshot 2013: It’s our son’s 9th birthday. The house is rented and all our possessions are sold. Family Sampson hit the road in a 10 ton truck, aiming to drive Africa Clockwise. We are travelling with a kitchen and a bed in tow, so I can eat what I need when I need it and lie down whenever I have to. Fuel is free because we recycle waste vegetable oil. Neither the planet’s nor my energy is renewable. It’s time to wise up.

* * *

‘Chronic fatigue’ is a cruel misnomer – it’s not tiredness. It’s incurable exhaustion that feels like ‘flu-with-a-hangover-having-run-a-marathon. Daily. For decades. Best-selling author Laura Hillenbrand’s oft quoted simile sums up the impact: “Your tiredness to our fatigue is a match as to an atom bomb.”

It’s a disability almost impossible to imagine, even for ‘healthy’ disabled people. No one who’s not been chronically ill can possibly conceive of feeling this lousy for this long. That’s why people with M.E. reject the term CFS. Completely F**ked Syndrome would be more like it.

In 2018, having no energy is far more crippling than having no legs. Western society may have acknowledged the need to provide wheelchairs and ramps for the disabled, but there is no access to life for those of us who are moderate to severely chronically ill. If our society decided to banish those without working limbs to permanent exile in their bedrooms there would be an outcry. And yet this is the solitary confinement endured by those without a working metabolism.

Like Raquel Mesegeur, I dream of public resting spaces, Cloud-Spotter Cafés, with chaises longues for people with chronic illness or chronic pain. Where we could lie down without shame and use the saved energy to squabble over the social model vs medical model of disability…

Allies, will you join us?

In 2018, Jessica Kellgren-Fozard has said it is more socially acceptable to be gay than invisibly disabled. Our QUILTBAG comrades can march with Pride to demonstrate their solidarity. The chronically ill cannot. The empty shoes of #MillionsMissing are symbolic of our desire to stand up and be counted while underlining the impossibility of our doing so.

Allies, will you march for us?

We literally don’t have enough energy to complain about how our chronic lack of energy is not being taken seriously. Sister, if you’re exhausted from constantly being expected to explain systemic racial prejudice to white people who won’t listen, just consider how weary we become protesting to doctors who insist our neuro-immuno-fatigue is all in our mind, knowing the effort will paralyse us with PEM for days, weeks, months.

Allies, will you speak up for us?

Womxn, LGBTQIA and POC may empower themselves by deciding to save their energy and refuse to engage anymore with their ignorant oppressors. But most people with chronic conditions don’t have the luxury of that choice. We can’t choose to ignore the system we rely on to dispense medical care and state benefits. We have to humiliate ourselves before disdainful doctors every day.

Allies, when will you step up for us?

* * *

Snapshot 2014: Moving through life at my own pace is working well for me through 12 countries along the west African coast. I’ve even survived having malaria and typhoid simultaneously. But the Big Green Truck arrives in Liberia at the same time as the Ebola virus and we are forced to evacuate.

* * *

It is too easy to pour scorn on a spoonie. Combined with the lack of obvious physical impairment, our cognitive dysfunction and lack of emotional stamina make it hard for us to communicate our realities clearly and forcefully.

If #MeToo has taught us anything, it is that we must believe each other. I fear even spoonies will read my story and doubt it. But I need to hold my head up and trust that you will. Travelling Africa after all mostly requires the things chronic illness teaches us: how to be tenacious and stubborn and resilient. And patient.

While we wait and wait for M.E. research budgets to trump that of male-pattern baldness in US, we are praying that Prof Ron Davis and his team at the Open Medicine Foundation are blessed with swift success in his Big Data Study looking for the M.E. biomarker and evidence of a ‘metabolic trap’.

I tell myself that if we can make it round Africa in a 40 year old truck running on vegetable oil, anything is possible.

* * *

Snapshot 2015: I am back in bed in my mother-in-law’s house. It’s snowing. My first winter in UK for 20 years has triggered my most severe relapse. For weeks I watch the heart-shaped shadows from the net curtain move across the wall. I long to get back to Africa.

I get online to update myself about research and discover a) there still isn’t any happening and b) a young woman called Jen Brea has Kickstarted a documentary about living with M.E. I feel both scared and validated. I write a blog called ‘Press Pause‘ admitting the extent of my chronic condition for first time.

I find out that people with M.E. are more likely to die prematurely of cancer and cardiovascular disease. It’s hardly surprising when our bodies have been under siege from our immune systems for decades. I might have 20 years less than everyone else’s three score and ten, so I resolve to make the most of what I have left.

* * *

When I get my tattoo, it will not be the semi-colon of a mental illness survivor, but a pause sign (II) signifying my solidarity with the millions missing whose lives are permanently on hold due to Invisible Illness.

Icon by Icomoon from http://www.flaticon.com

* * *

Snapshot 2016: Libya is too dangerous to cross so we are standing on the deck of a ferry taking the Big Green Truck across the Med from Morocco to Spain. When we left Cape Town, we thought it would take us 2 years to drive around the whole continent. What with losing a year to the Ebola pandemic and 16 breakdowns so far, it’s already taken us 3 years to get halfway. My daughter has grown too big for her bedroom and we’re going to have to find her a boarding school. But at least we’ve made it this far together.

* * *

In her opinion, said Dr A, there are three things vital to keeping well: supporting gut health, boosting the immune system and avoiding stress. She was delighted to hear I eat yoghurt daily and take probiotics and vitamin C; that I haven’t had gluten or caffeine or alcohol for decades; that I do T’ai Chi every morning, even if it is the only upright time I manage that day.

“But you’re doing so well!” she exclaimed.

It wasn’t until she said it that I realised it had never happened before. Dr A is the only person ever to acknowledge or congratulate me on my disease management skills: for working it all out for myself in my early 20s in the absence of any medical knowledge or care; for the careful calibrating of my life every single day since; for mastering as best I could the neverending balancing act that is living with chronic illness.

Looking into her beaming face, I found myself in tears.

I’d been braced for the usual disbelief, for that icy dismissive attitude bordering on disdain. Her warmth released a luxurious rush of trust and sense of possibility within me. With such an open-minded doctor at the beginning, I could have discussed difficult options, worked together towards understanding the vagueries of my condition, have had an ally in the strategic employment of therapies, one with a medical education and the capacity to skim research papers quickly and make informed calls.

But of course, this doctor is Kenyan. Africa has been spared the propaganda of the Wessley School. A sleeping sickness is taken seriously here.

* * *

Snapshot 2017: It’s our fourth week stuck in a garage in France and September is looming. I tell my husband that if we don’t get the parts we need soon, I am going to get ambushed again by a European winter. We’ve still got to drive across Italy and down the Adriatic Coast to Greece before we can cross back to the warmth of Africa. I beg him to get a move on and get us out of here.

* * *

The heroic efforts of dozens of patient activists over the last few years have emboldened me. Since Oscar-shortlised Unrest, film director Jen Brea has become the reluctant poster girl for M.E. and walks the TED talk from her wheelchair. Housebound Jenny Spotila keeps a sharp eye on NIH research budgets on our behalf. Cort Johnson reports back from conferences. Bedbound Tom Kindlon reads and distills the latest research. Hundreds and thousands of us who can’t do those things are eternally grateful.

We know that keeping up the momentum of consciousness-raising is dangerously depleting for individuals. Every year after the #MillionsMissing awareness campaign on May 12th, the entire M.E. community is on their back for a month.

A couple of weeks ago Jen Brea reflected heartrendingly on the infinitesimally slow pace of her progress. She was agonising about the eternal dilemma of having to choose between devoting precious energy to activism or creative endeavour: “I don’t want to be an activist. I have to be an activist.”

I long for Jen to get well enough to make more movies. (Imagine the dramatic Spotlight she could throw on a transatlantic cover-up of collusion between medical researchers, insurance companies and the institutions supposedly regulating them resulting in the protracted abuse of countless innocents. Starring Robert Downey Jr. as maverick journo Dave ‘PACEman’ Tuller, Hugh Grant as evil Professor Weasel plus Scarlet Johannssen playing Jen. And Omar 😉

But Jen recently had to have surgery for thyroid cancer and is battling to get her capacity back; in the last 5 years, through Unrest, MEAction and MEpedia she has led the mobilisation of a global movement and jeopardised her own health for the cause. She needs a break and pwME need to step up.

We must learn to share the burden, pass the baton, do shifts.
Luckily, we are legion.

Like a hydra we will rise.

* * *

Snapshot 2018: Since the relapse, every day is the same: the Sisyphean task of dragging myself up, doing Tai Chi and fuelling myself to lie on the bed and write for an hour or two. Thankfully my 14 year old son is now mostly homeschooling himself, because brain fog makes explaining his maths almost impossible.

It’s supremely frustrating that I’m six months behind in the travel diary blog. Whenever I start getting my balance back something knocks me down: through Egypt the cold kept me mostly bedridden; in Sudan I got typhoid and the meds knocked me sideways; in Ethiopia I was battling to breathe at altitude. By necessity, the story is becoming less about who and what we meet upon the way and more about my internal journey to the acceptance of a level of disability I had hoped I’d left behind long ago.

But I know how lucky I am to have even glimpses of the places the Big Green Truck is rattling through.

* * *

M.E. is more common than MS, Parkinson’s and AIDS put together. There are an estimated 15-30 million people with M.E. worldwide, with at least 1 million in US, 250 000 in UK, 560 000 in Canada and 100 000 in Australia. There are no stats for the countries we’ve seen on this journey. South Africa has the only M.E. association on the continent.

What about the rest of the world? A 2006 study found the prevalence rate of CFS in Nigeria was significantly higher than that of the USWhat’s happening to those with invisible illnesses in invisible countries? 

The history of AIDS activism can teach us a lot. In 1980s, HIV was stigmatised as the ‘Gay Plague’ in the West, but by the 1990s highest infection rates were revealed to be amongst heterosexuals in sub-Saharan Africa. Isn’t it just as likely our ‘Yuppy’ disease will be shown to be most severely impacting unemployed people of the the global South?

* * *

When I started writing this, the first line read “Yesterday, I met the first doctor to believe me.” It’s taken 3 weeks, my every capable moment, writing on my laptop while lying down. I am physically challenged by being too weak or too dizzy to sit up but the mental hurdles are worse. The. Interrupted. Thoughts float away from me as if being pulled out for the Pensieve by some malevolent wizard’s wand.

The impact of the cognitive challenges of chronic illness are perhaps the most underestimated. You become unable to follow a thread, to connect words to meaning. I have a degree in English from Oxford and – genuinely – I misspelled both the words ‘English’ and ‘Oxford’ while typing that. I was trying to say I haven’t read a book this year. I devote my mental energy to homeschooling and writing an account of our journey for my kids to remember it when I’m gone.

Being unable to express yourself clearly in a doctor’s room can be fatal.

* * *

People with M.E. get used to such a poor quality of life that we describe our health as “good” if it’s not dire. A good day for me is when I can think clearly enough to write without too much pain from typing the day before. A sudden slump, sore throat or painful glands is the red flag telling me I’m overdoing it. Through my 30s that was after a day at my desk, on the phone. In my mid 20s and now in my late 40s it could be from having a shower. To get this written, I’ve been taking one once every three days.

Still that’s easy compared to Mary Smith’s experience of taking a shower.

* * *

To adapt to chronic illness, I have simplified my life in every way I can. To save my ever-dwindling energy, I dispensed with a deadline-filled job, a house that always needed cleaning and a social life with friends. In order to nurture my family, I have reduced and refined my existence to the bare minimum of things I need to stay functioning: clean air, fresh food, happy kids. But still the walls of my limitations keep closing in.

I know my body very well and it’s feeling increasingly worn out. More and more often I wake gasping for air. My heart feels like it could seize at any time. The clamp on my brain stem is tightening. But returning to the state I was in 25 years ago has allowed me to appreciate the differences – despite greater physical challenges, I have far less mental anguish, more philosophical stamina.

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. (The irony of forgetting the content of this paragraph twice in the writing of it, the enforced calm, the patience, waiting for the sense to float near enough back to me so I can make a grab for it and pin the meaning down. I can’t even work out if it is irony.)

On good days, by the beach, I bask in gratitude that my chronic condition allowed me to downsize my life and prioritise peace.

* * *

We are our own doctors. We have to be. As Jenny Spotila has said, all those of us disabled with chronic illness for more than a decade are PhDs in self-care.

It’s time to make the most of our best resource: ourselves. Let’s make MEpedia the biggest repository of global data on our condition and speed the work of the heroic few researchers on our side. Let’s all submit our medical histories so patterns can’t be ignored, post the strategies and therapies that have helped us. Let’s list the medical professionals who are sympathetic and blacklist the ones who aren’t.

Chronic illness veterans, carers and allies have to call Time’s Up on disbelieving doctors. We need to occupy their rooms with posters listing symptoms and a copy of Unrest and threaten to stay lying down on the floor until they watch it. We must insist that they listen. Because only #Spooniesplaining can stop their sheer ignorance condemning young people to lives in wheelchairs, condemning children to lives in bed and condemning parents to witness their unnecessary suffering.

We don’t want your pity; we demand your respect.

Medical intervention 7: Here in our second month on the Kenyan coast, at my ideal constant 27˚C heat, I am slowly pulling back to 40% upright. Next week, I’m doing a talk to Dr A’s colleagues at Mombasa Hospital. Posting this essay on the blog will save me explaining my M.E. history in detail so I’ve got enough energy left to answer questions.

* * *

Snapshot 2018: August 8th is Severe M.E. Day. It’s also our 20th wedding anniversary. I won’t be going out for a meal or a drink. I’ll be lucky to get out of the truck and walk 100m along the beach. But I’ll be feeling so blessed to be able to do that. Because I’ve been in the sunken place and I know that in comparison, this is paradise.

Bedridden far more bearable at balmy 28˚C with a sea view

Truckulence on the coast of Kenya

Sam Pearce has a Masters in Diversity Studies from the University of Cape Town and a PhD in Patience and Persistence from the School of Chronic Illness

Follow www.africaclockwise.co.za to see if she makes it home to South Africa.
Facebook: Africa Clockwise
Instagram: @africaclockwise
Twitter: @samfleurpearce

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Egypt 1: Alexandria or “Love Egyptians, Hate Egypt?”

I cannot explain the euphoria I felt sitting in the front seat of the taxi into the city of Alexandria at 2am. As we cruised down the long straight road between stretches of black water, even the lights bedecking the towers of the enormous refinery like a bald Christmas tree seemed celebratory, the dirty plumes of smoke beautiful. I was amazed and elated at my feeling of relaxation and safety: we’d arrived, we’d made it, all five of us! Nothing could dent my sense of achievement, not even the juggernaut of Post-Exertional Malaise that was going to hit me tomorrow. I hadn’t thought I could feel truly calm without the physical support of the truck – kitchen and bed in tow – but I did and that felt like an absolute triumph.

Monte was curled up on my lap, still groggy from the vet’s sleeping pills that hadn’t affected Lucky in the slightest. When the only hotel in Alex with “we accept pets” on its website said it was full, I remained unruffled. At 4.30am, after 3 more hotels had refused us, Wael the taxi driver, whom I’d liked and trusted instinctively on arrival, took pity on us, made a call and rented us an APARTMENT! Cheaper and so much better than any hotel room: loads of space, self-catering, separate bedrooms – and best of all, a tiled floor for the puppy to pee on.

I would like Wael to know that his compassion was fundamental to our love of our time in Egypt; that despite the piles of official bullshit that we had to wade through during the next three months, this selfless act of kindness on our first night gave Alexandria a heart-coloured tint that did not fade. For every painful piece of bureaucratic bollocks there was always a generous-spirited Egyptian ready to help get you through. Would that all weary travellers were shown such humanity on entering our countries.

When I was woken at noon, I went to open the balcony shutters and was greeted by this view:

What a salve for the weary winter traveller…

to finally arrive at a place so warm

Look at all the welcome mats laid out below!

There was a man wandering about below in long grimy robe – holy man or beggar, it was difficult to tell from way up here. I reflected on the way I was thinking about this local, my new neighbour: so happy at the prospect of getting to know him. I felt a sense of wonder at how much easier I feel about encountering unknown places and people since beginning our journey in 2013. How much more open I am to learning about cultures of which I am ignorant. How fond I anticipate being of Egypt after DRC, Nigeria, Liberia – all countries where a negative experience was expected but a very positive time had. I wondered how much more open I could be with application and practise – if I keep moving, could I finally arrive at being able to Love Everybody Unconditionally? Will that be how humanity evolves to be truly civilised?

* * *

Like many people with Myalgic Encephalomyelitis (pwME), I can walk but if I don’t use a wheelchair at the beginnning of a longhaul plane journey, I may be desperately in need of one by the end. It’s not so much the walking, but the standing in queues waiting to board which exhausts me. pwME often have orthostatic intolerance (or POTS) which means that when you stand, blood pools in your legs, your heart rate rockets, you feel faint and your brain stops working properly.

Hand luggage from Athens airport

To all the people who were bemused when I was wheeled straight to the front, then proceeded to walk up the ramp – please understand, just because you can’t see my disability, doesn’t mean I’m not disabled. I’d already started the day in moderate pain from PEM after three days’ intense activity before we got to the airport; standing in a queue for 30 minutes on top of that would have cost me a week in bed.

Safely squashed into our seats

If Sampson didn’t strictly need an ‘emotional support dog’ at beginning of the journey, he certainly did by the end. We had no trouble getting both registered pets on the Athens to Istanbul leg, but as we were boarding the plane to Alexandria, an official arrived to say that air regulations stipulate that a dog and a cat are never allowed together in the same cabin. Two cats are OK, and even two dogs, but not one of each.
“Not even if they are both tiny and used to living together?”

You can tell how much this dog is loved…

by the lengths we went to to get him back to Africa

I could see Sampson was getting in a state and about to lose it. After all the effort we’d gone to to get them on the plane, to be turned back at this point… I could see him trembling. We’d heard so many travellers’ tales, read too many online horror stories about nightmarish Egyptian customs processes crammed with officials eager to pounce on any excuse for extra charges… Sampson was scared that if we relinquished either of the pets, we might not get them back without some major baksheesh.

As he couldn’t bear to be parted from the puppy, Lucky was taken and put in the hold. I was concerned the carrying case I’d had her in on my lap wasn’t strong enough or warm enough, but made a deliberate decision not to worry. I had to save my energy, because I was bracing myself for a fight the other end.

But when we came to disembark, Lucky was waiting for us at the door being cooed over by a bunch of air stewards. PHEW.

The wheelchair was whisked across the luggage reclaim area, past a huge passport queue and straight through customs, with the Sampsons straggling in its wake. A uniformed bloke standing feet akimbo at the very end was about to wave us through when he caught sight of Monte in Mark’s arms and held up a quizzical hand:
“Oh yes,” I said, flourishing a folderful.

He took out the wad of documents, scanned the vet approvals and beckoned us on without checking for export stamps. I could have spent a day at the Acropolis Museum after all! But I was so grateful we’d made it through without a challenge, and relieved Sampson hadn’t been pushed to breakdown, I tipped my handler the first note I got out the ATM.

* * *

It took another four days to get Big Reg out of the port. This was three days longer than we’d been told, but at least gave me a chance to do nothing but rest and recover from the inevitable crash.

Not a bad place to be stranded for a few days

It even had a T’ai Chi area

Every day, Sampson jumped on a taxi to Consolidated Freight Services (CFS) in town to travel with a fixer to the port. He described it as “some Orwellian nightmarish administrative hell hole”. They went through fifteen different offices and a myriad procedures: logging details of driver and visa, obtaining clearance for licence and insurance, checking of engine and chassis number, stamping a new number onto the engine, and issuing of a credit card-sized Egyptian licence for the truck separate from the carnet and his international driver’s licence.

At every desk, there were a dozen people doing one man’s job – and they were all men. It seems the state actively encourages this sheltered employment. There were no computers, and everything had to be issued in triplicate with carbons like a Monty Python parody of British colonial bureaucracy. Sampson was shifted from pillar to post and bounced back again: everybody had to have copies of everything else and every copy had to be stamped, signed then restamped and countersigned. Big Reg also had to have new Arabic numberplates and two compulsory giant fire extinguishers issued – even though we had two perfectly good ones already.

This is the breakdown of the non-negotiable €920 fee charged by CFS:

“Clearance: 260 Euro
Traffic (inc. Egyptian numbers & license, fire extinguishers): 220 Euro
Customs inspection: 150 Euro
Drivers inside port: 10 Euro
Port Yards & receipts: 150 Euro
Port permission: 25 Euro
Passport Stamps from Ministry of exterior affairs & carnet stamp: 105 Euro.
Rate EXCLUDE only vessel DTHC which is the discharging cost from vessel you can either pay vessel agents direct or we pay & charge to you at Cost.”

Not at any other border have we been obliged to pay to have a customs inspection or carnet stamp. Or get “clearance”. Sampson also dropped about another R1000 in photocopy fees. The extra “discharging cost from vessel” we had to pay to Marina Shipping came as a body blow as we weren’t expecting it to be so hefty: that $120 (€102) was the last of our emergency cash. For anybody else attempting this: the cubic meterage is the key unit affecting costs – we could have halved ours with a more conservative submission.

These fees were on top of the €1500 we’d paid to Minoan Lines to put Big Reg on the Grimaldi RORO ferry across the Mediterranean. It did seem insane that we had to pay 2/3 of that again just to get the truck out of the port of Alexandria. It came to over R42 000 in all (excluding flights). We absolutely couldn’t afford to break down or go to hospital for a few months.

On the positive side, Egyptian food was super cheap and super good.

Sampson became a big fan of El Falah kebda restaurant

where fingers of the freshest just-delivered bread…

piled with chopped liver fried in spices are served with fresh lemon and chillis for R3 each

And oh to be back where tomatoes taste of tomatoes!

It was also about 5 ˚C warmer than Greece. Alhumdullilah! The increased temperature really helped my energy levels. People were also warmer – Sampson made some helpful friends as soon as he set foot out the door: neighbour Mohamed Galil escorted him to register a SIM card; Mark Ashraf wrote restaurant recommendations on a paper napkin.

It was also gratifying to see…

that the female ideal portrayed in Egyptian adverts…

was more realistically sized than the Western version, if disturbingly pale

I didn’t get to see the sights of Alex

apart from sitting in traffic

and more traffic

and the view along the corniche

But although the city’s crowded

so much of it is beautiful

you can see why Cairenes flock there every holiday

I was sad not to be able to see more

* * *

Having mild ME is like living your life on a tightrope. You advance gingerly through each day, you look ahead constantly, you weigh your every step. One wrong move could take you down. You are forever dodging the curveballs being thrown at you: a virus, a period, a shock. It’s the ultimate balancing act.

Having moderate ME is living your life floundering in the safety net, trapped by pain, an infinite struggle to get back on your feet. It doesn’t help being weighed down by the stigma and shame of disbelief.

Severe ME is lying smashed and broken on the floor, forgotten in the shadows below.

The people watching only ever look up and see the tightrope walkers smiling effortlessly under the lights.

It doesn’t look dangerous.

* * *

After pulling off the most outrageous act of the trip so far in managing the crossing from Greece to Egypt, I had fallen off the tightrope big time. I was thrashing about in the net.

For pwME, going to sleep is like going to war. You battle to get down deep enough to replenish your energy stocks. You dread waking drenched in cold sweat every hour through the small hours and feeling the raw pain of your PEM each time. All too often you wake in the morning more exhausted than the evening before because you feel like you’ve been fighting to sleep all night.

When Monte chewed through my only pain-free sandals, I cried.

It took me three days to write an email to the WCED appealing their denial of Ruby’s Afrikaans exemption. In between Zola and me caught up with our Radio 4 podcast favourite Susan Calman’s progress on Strictly and discovered the Nicholas Brothers. WOW.

On Monday, when Sampson called to say the truck had finally been given the green light to leave the port, Zola and I packed up in half and hour so as to save the cost of another night. I was so proud of my son’s super-efficient kitchen clearing skills: we left the place immaculate. Good Samaritan neighbour Galil came to fetch us with his ginormous Rottweiler puppy Bolt and took us to wait in his 14th floor penthouse flat opposite.

The view from the penthouse

Mohamed Galil and Bolt, his 11 month old Rottweiler puppy

(bizarrely he hadn’t heard of the movie)

Monte knew his place

Though he worked up the courage to say hi

Big Reg finally made it back at 4pm. The good news was that nothing had been stolen during the passage across the Meditteranean except the tiny Michelin Man off his keyring!

Michelin Man went missing

The bad news was that, despite Sampson having a 90 day visa in his passport, only 30 days had been granted on his driver’s permit. Despite the considerable fee we’d paid for handling, CFS said there was nothing they could do about it. The permit couldn’t be extended before the expiry date. Worse, it could only be extended from the port of entry i.e. Alexandria. Sampson was faced with the prospect of having to return to Alex twice during our 3 month stay as we travelled south across the country to keep the truck legal – an impossible task.

The first day back in the truck , I was dying to get back to our normal routine, but Zola was proving a nightmare. Being allowed to sit on constant wifi through the last week had got him into bad habits. We were already a week behind with schoolwork, but he was reluctant to knuckle down and for the first time was being so rude and disrespectful, he was reminding me of Ruby at that age! Getting his phone confiscated for 2 weeks till she arrived caused a massive strop and he sulked in his bedroom for the rest of the day.

Tsk, any excuse for a distraction…

On top of this upset, our sleep was disturbed because a local Mr Grumpy had moved us on from a quiet protected square next to Gabril’s block to the communal area in the middle, where Young Men With Cars came to smoke, show off and hang out in the cool evenings. On the second night, the Young Men With Cars started playing footie around the truck just after midnight. At 2.30am they were revving a broken down engine.

At 5am, Sampson was up to walk the dog.

Egyptians seem to dig all things German. It’s weird but Teutonic brands are so admired, spaza shops call themselves Aldi and drivers stick Mercedes logos on Chrysler bakkies. Most of all, Egyptian men LOVE German dogs. Every young man about town wanted a Rottweiler or a Dobermann as a status symbol. The hipper the owner, the bigger the dog. All the high-rise guardians loved Monte. Every time we stopped, a crowd of youths would gather round to ogle the puppy. Sampson was even offered 5000 Egyptian pounds (R4000) for him. He was terrified Monte was going to get stolen and ended up buying a thick chain to secure him to the truck when lying outside.

The SA Consul in Alexandria was away on holiday, so after several days failing to get through to the SA Embassy in Cairo, we decided to get out of the city for the weekend and try to find a quiet berth next to the sea. We drove east out of Alex, thinking that driving towards the Sinai was less risky than driving towards Libya.

(What ignorant fools. The following weekend, a bomb and gun attack on a Sufi mosque in Northern Sinai during Friday prayers was to kill 235 people.)

This was the same week CNN coverage of migrants being sold at auction outside Tripoli was causing an international outcry about modern slavery. Our only experience of Libya however was meeting Al Sayed, a super-friendly Libyan truck driver who makes his living smuggling petrol across the border, loves his mum, and, while in Alex to visit her, stopped to admire Big Reg. He proceeded to entertain us with his tales of his great passions – Great White Sharks, Mike Tyson and Greenland – and photos of his giant jet skis/bikes/trucks. His looks and charisma reminded me of Kieno Kammies and his constant refrain “No way maaan” was weirdly Capetonian.

Al Sayed Daw Omran Ben Daw, our Libyan friend, showing off the Great White Shark tattooed on his arm

This is Mariam Barghash, whom Sampson christened Ruby’s US Egyptian sister, cos she was hilarious giving him lip, with her cute Pocohantas plaits

Meanwhile, SA was quietly smouldering as the state capture shit began to ignite the fan.

It was late to set out, so we were relieved to have installed our new Hella brakelights

Big Reg couldn’t get off the highway. We were looking for any road to the coast, but 50km out of town past a massive gasworks had still not seen a single turn off to the sea. As it was getting dark, we managed to pull off onto a road that crumbled then petered out into sand. Within five minutes a soldier appeared, then five more. We offered our Letter of Introduction in Arabic, and a superior officer was radioed. We were surprised when he arrived looking like a 20 year-old Freddie Mercury. It’s lucky Sampson is used to winning over hostile crowds; he soon had his new habibis grinning, and even got away with hugging them goodbye…

This became the pattern. In one weekend, we underwent appraisal by four sets of uniforms: two military, one border guard, one police. The second entailed a full shake down by three soldiers who were not aggressive but superbly efficient: within five minutes they had rifled through every cupboard in the truck. In 30 seconds one guy had found an oyster shucking knife so deeply buried in a storage net Sampson didn’t even know it was there. There was no sense of hustling for a bribe; these were implacable security checks – all extremely professional, but not terribly relaxing.

The last one took a couple of hours, featured five bakkies and a parade of automatic weapons and balaclavas and ended up with the senior officer parked off on one of our deckchairs while the young conscripts posed for selfies with Sampson.

Welcome to Egypt

Quite surreal

Bless ’em. Just lads.

Later that night Sampson’s solider fans returned to invite him back to the post for a smoke and a drink. “Shoo” he said, after finally shutting the door behind them, “You might hate Egypt, but you gotta love Egyptians.”

If you’d like to understand the background to this state paranoia, I found this article on the recent history of post-revolutionary Egypt very useful. (Please note the throwing into gaol of an innocent bystander to a political protest.) Our phones were definitely being tapped: when my Mom rang from South Africa, the call would be dropped after 30 seconds then when she rang back the rerouted number would show up as ‘Unknown’ and sometimes the recording of our conversation would be played back.

Various parts of the internet were blocked. I couldn’t get on to the Al Jazeera website, though whether this was permanently censored or just temporarily while AJ journalist Mahmoud Hussein is being detained by the Egypt government I couldn’t say (18 months and counting). At the time of publishing this blog, recently re-elected President Sisi had just extended the State of Emergency allowing this level of surveillance for the fifth time.

Big Reg parked next to the first military post

At least we got a beach walk

Monte was getting the hang of walking to heel

and exploring

Zola posed for his latest album cover

No matter how far we went, it seemed we couldn’t get beyond the military exclusion zone, or escape the choking clouds of crop stubble smoke or the hoards of flies. We couldn’t figure out where they were coming from, there was nothing but wind and sand outside. Seriously, if you want to make a quick million, start exporting fly-paper to Egypt.

Flies on the bed

Flies on the towels

Flies on the textbooks

Flies on the table

Zola’s Hermionesque vocabulary was cracking me up:
“These flies are insufferable!”
“I’m baffled by frequency tables.”
“No, it was instantaneous.”
Too much hanging out with poncey Poms?

A bit further down the coast, we asked the next checkpoint crew if we could visit the mouth of Nile, and ended up being escorted down the road by two guys in fatigues. There were a few fishermen around but basically the whole stretch was deserted. Does Egypt really fear invasion from the sea so much that it restricts development of the entire Mediterranean coastline?

Being escorted to the mouth of the Nile

The soldier took this souvenir pic for us

Crossing the Nile into Rashid

a picturesque place

with imperious overtones

The pretty port city of Rashid (a.k.a. Rosetta as in the Stone) was photogenic but I was too sluggish to catch pics of the corniche. There was no shortage of men chilling with coffee/tea/shishas in the cafés lining the delightful promenade along the Nile.

Sampson bought palm heart snacks – vendors were chopping them out as if whittling tree stumps was easy. I remember being told about how people had survived on them during the civil war in Liberia. Zola described the taste as “Half white cabbage, half coconut” – spot on.

A portion of palm hearts: very crunchy and sometimes nearly sweet.

Parking off on a football pitch was the best we could do

At least there was lots of room for Sampson to exercise Monte

Much to the delight of local boys Mohamed, Nader and Ahmed

Sampson jnr taking it to the next level as usual

I wasn’t coping well with travelling; sitting up in the front seat was too rattling for my dizzy head, so I was mostly lying down in the back. We stopped outside a service station restaurant, and a leather-jacketed security guy was giving us grief until Chef Karim came out to greet us. Despite never having visited an English-speaking country, his English was fluent just through studying literature. We gratefully ordered a wonderful home-cooked meal from him, and enjoyed a quiet night without hassle.

Our dear friend Karim Elsadani

Karim is the son and grandson of chefs but longs to travel, and to that end has “educated himeself online, via YouTube”. He was telling us that Egypt was far from being freed by the mass demonstrations that began in Tahir Square on 25th January 2011 (following other pro-democracy protests of the Arab Spring) finally toppling President Hosni Mubarak. The autocratic excesses of President Mohamed Morsi’s Muslim Brotherhood government led the populace to protest again and gave the military an excuse to come back and implement a coup d’etat. The subsequent security crackdown – resulting in at least 1000 deaths on one day in August 2013 – seems to have left the country in a state of shock. Karim feels it’s more oppressed now than before; no one dares speak out against government policy and members of his own family had been targeted by the authorities following a Facebook post.

Nevertheless, Karim volunteered to be our Voice on the Phone from the Embassy were we to run into any trouble (as Hugo was for us in Angola) and has bravely given permission for me to include his opinions here . When I asked him what his dreams were, he said sheepishly “I just want a girlfriend”. He’s nearly 30 but he says it’s impossible to meet anyone stranded out here on the fly-blown highway.

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

Africa(‘s not had its) Day

Just before the blog *finally* gets back to recounting our Africa Clockwise adventures on the east side, I would like to make a direct appeal to the many idealistic young Africans we meet upon the way. As someone who has spent half my life in the UK and half in South Africa, and traveled overland across both continents in the last 5 years, I feel there are some things I should flag for your attention.

In the week of Africa Day, as hundreds more migrants were rescued from sinking boats off the coast of Spain, Italy‘s new populist government vowed that “the good times for illegals are over”, the Hungarian government introduced laws trying to criminalise those who would assist them and the French president revealed that the only guaranteed way for an immigrant African to be accepted as a citizen was to demonstrate the skills of a superhero. (#ThisIsEurope)

In addition, Australia’s infamous holding centre Manus Island reported its third refugee suicide this year, Trump’s zero tolerance policy at the US border with Mexico was shown to be forcibly separating children from their parents and 25 West Africans who set out on small catamaran from Cape Verde and sailed 3000km across the Atlantic were rescued off the coast of Brazil after 35 brutal days at sea.

Migrants are putting themselves at the mercy of a hostile world. At the other end of the scale, the brain drain persists as Africa’s finest young tertiary-educated minds continue to head out to pastures perceived to be greener in the academic and professional fields of US and UK. All too often, however, they find they have to be “ten times better” to be offered equal opportunities or acknowledgement.

Please young Africans hear this: Europe is not the promised land. Europe is a continent of aging people, spent resources and tired ideologies. Their governments increasingly sound like a bunch of pensioners in a cramped old age home squabbling over who gets to hold the remote. Their attitudes are selfish, their vision is narrow and their outlook pessimistic. Their glory years are behind them but it’s all they talk about. They’re too short-sighted even to see the writing on the wall.

By contrast 60% of Africa’s population is under the age of 25. The vibe here is youthful, enthusiastic and dynamic. There is no greater explosion of the creative spirit anywhere than in Jo’burg, Lagos or Nairobi right now. The innovative intensity of NYC or London may be legendary, but I would testify that Naija’s energy is greater: Lagos is hustling in competition with a population of 21 million compared to 8+ million, so it’s bound to be.

‘Wolof Fame’ from Dakar Biennale 2016, Senegal

The future lies with Africa. The continent is poised on the brink of harnessing the demographic dividend. It has six of the world’s ten fastest growing economies according to the World Bank – with Ethiopia currently clocking in at 8.5% – and is the second fastest growing economic region behind South Asia.

If the AU were to inspire African nations to invest primarily in upskilling their youth what fourth industrial revolutionary milestones might they achieve? Young Africans may be able to leapfrog ahead into the post-digital age in the way they bypassed landlines and went straight to smartphones. (Addis could start with speeding up delivery of the AU passport please, so we can start sharing knowledge with and of each other and capitalising on it.)

The African spirit is infinitely capable, infinitely resourceful, infinitely adaptable. This is how your ancestors have endured and overcome slavery, colonialism, the Cold War and finally capitalism. Despite great suffering, you remain generous to strangers, mindful of nature and humble before your gods. Generally, you are much nicer people, believe me: genuine, joyful, grateful.

Young African, Europe does not offer the hospitality that Africa prides itself upon. There is no warm welcome for the stranger there, no teranga, no karibu. European cities look good on TV, but the places you would end up living are as often as dirty and crowded as where you are now, plus a lot colder so you have to find money for heating as well as food. However intelligent and hard working you are, you will be treated like a second class citizen or a sponger, marginal at best, criminal at worst. However successful you become, you will be always be viewed with suspicion, as a terminal outsider if not a terrorist.

Young African graduate, by taking yourself on a one way ticket abroad, you are wilfully continuing the deliberate leeching away overseas of the superior strength of this continent that started with slavery. By taking your talent to the developed world, you are leaving the young and old of your extended family, your country, to cope without you. You will be striving to add value to the state and status of ex-colonial masters who will not appreciate your labour or your sacrifice. You will never be first choice for funding or promotion – anything you are granted will be seen as a favour, as ‘token’ or ‘quota‘, never on merit. You are severing yourself from your family, from your culture, from your roots – and for what? You will never enjoy the respect or attain the dignity you deserve. By all means go and get valuable experience – but please bring it back home.

I’m not completely naïve. I know Africa has its challenges, its Big Men, its corruption (although Spain was showing us this week you don’t have the monopoly on that). But right now Africa has resources the rest of the world want. Why is China here building all the new roads? While investing in your infrastructure, they are making deals for your minerals and your oil. Most of all, they’re going to need your people because their population is also ageing rapidly.

There is a bitter irony in this age of fear and loathing of migrants that soon, once again, Europe is going to be desperate for African labour. But it should be sweetened by the understanding that, this time, they’re going to have to pay for it.

Young Africans with brains and bravery and burning ambition: don’t go west where you’re not wanted – stay home and invest your energies here. Band with your peers, pool your ideas and and lift Africa up. Research and invent entrepreneurial strategies to tackle African problems, stop your short-sighted governments selling your resources off cheap and insist that the ex-colonial masters fund these initiatives as reparations. Not as aid, but trade.

Make Africa a continent that the Empires of Mali, of Ashanti, of Kongo, of Kush, of Aksum could be proud of; that Cleopatra and Askia the Great and Queen Njinga and King Shaka could be proud of; that NkrumahLumumba, Sankara, Cabral and Fanon and Biko and Fela and Makeba could be proud of. A continent that can teach the world other ways of being, other ways to do democracy – maybe even some manners.

I know times are hard and sometimes it feels like progress is impossible, but if all the go-getters carry on exporting their gifts, those left behind are condemned to exploitation unto eternity. Collaboration and confidence are what is needed – along with constant civil society pressure on governments to deliver economic power to the people rather than their own pockets.

Please don’t risk losing your life or your dignity. Stay where your skills are sorely needed and will be far more appreciated. Stay home and Make Africa Great Again.


“We must act as if we answer to, and only answer to, our Ancestors, our children and the unborn.” Amilcar Cabral



Posted in 20b All Africa | Tagged , , | 8 Comments

Not the Acropolis

On 30th Oct it was exactly one month before Ruby flew into Cairo to meet us, and the week’s to-do list was intimidating: collect the new carnet from the SA Embassy in Athens, book the Big Green Truck on a RORO ferry, apply for Egyptian visas, book flights to Alexandria, get the pets to a vet for their final approval and, oh, find somewhere cheap to live for the days in transit because after making the ‘twice the value of the vehicle’ Egyptian entrance deposit to the AA, there was zero cash left in our account…. Yet all of this was causing me less stress than the fact that my capacity was shrinking at a rate of 10% per degree centigrade dropped.

Back to the city

We got up at 4am to avoid rush hour on our drive into the capital. Sampson was panicking thinking we were too late, but Greece wakes later than Africa – the road into central Athens was clear. Big Reg sailed down the wide open boulevards lined with impressive buildings, from what I could see from my bed, and arrived outside the SA Embassy at 5.45am. It was still bitterly cold.

Funky Athens

Early morning Twitter had a UK minister reportedly calling his secretary ‘sugartits’ in the latest #metoo scandal and President Zuma reportedly described as ‘a gangster like us’ by Agliotti. Hardly an edifying start to the day.

All roads lead to the capital

I was wasting so much energy trying to keep warm, wrestling layers of clothes on and off morning and evening, that I was beginning to avoid having showers because the effort was so exhausting. Pain was now constant, the aching in my back, hips, arms unable to abate in the absence of afternoon heat. But still I put on two hoodies and forced myself to do T’ai Chi outside on the cracked marble steps, watching the clouds of my breath freeze on the air. For I knew that once I gave up gently oiling my joints and stoking my internal boiler, I would be on a slippery slope back down to bedridden.

Greeks inspiring us with innovative ways of travelling with a dog

Cats on laps much easier in my experience

We were greeted at the SA Embassy by the fabulously warm First Secretaries Mrs Kgomotso John and Mrs Sejako Marole. Having picked up Big Reg’s third carnet, posted there by the AA in Jo’burg (thanks Bokang!), we were invited in for rooibos. We were exclaiming at the warmth of an African welcome compared to a general lack of greeting in Europe – though Mma John added that her last posting, Equatorial Guinea, was very dour as so oppressed. They told us some hilarious stories of how badly Greek people drive and how scratched cars are considered a matter of course here and nothing to make a fuss about!

Magnificent South African Embassy women: Sejako Morale (l) and Kgomotso John (r)

Sejako is so full of positivity, I loved her immediately. She’s a mother of four and was  telling us tales of the family setting off in the car to see Mount Olympus with just “water and salt” in the way she was brought up. That’s the soul of a true African adventurer!

Mma John was impressed by the cleanliness of truck (I had made a bit of an effort over the weekend to get the ‘en suite’ sparkling) and how Zola was reading Shakespeare. When she pressed €30 on me to treat him, it felt like a present from his gogo 🙂 He got on with school while I made lunch before collapsing on the bed for a couple of hours. The café Sampson was sat sending emails from was too smoky for me to go in.

* * *

I started writing the following 3 part poem late in 1994. It was the only thing I completed during the period I slipped from being moderate to more severely ill with M.E. It took me several months.

I was 24.

From the Bench

She sits like Patience on a monument
Smiling at grief

Twelfth Night, II iv 115


Now I am an old woman
I stoop slightly
As if my spine aches to carry my heavy head.
My bones complain
           Noises hurt me
           Crowds fluster me
And sometimes I forget things.

Somedays it’s my heart
And somedays it’s my ears
And somedays it’s my back
And somedays I’m just

I am an old woman
Arthritic hands
Blue with cold on spring days
Not easy to carry bags of shopping
And stairs might as well be mountains.

                                                Walking through the Gardens I saw
                                                Two smiling white-haired old ladies
                                                Sitting on a bench, resting
                                                                  their pink tweed suits
                                                                  their thick ankles
                                                Pausing in the shade.

                                                They overtook me later
                                                As I sat on a bench, resting;
                                                I know how their old legs feel.

Somedays I am frustrated:
My body has betrayed me.
Somedays I feel life is passing me by
Yet I am content to sit quietly
Surveying the living
Blankly conscious
I have lost myself.

The most frightening thing is content.

* * *

The next day was another 4am start, driving to the shipping agency Minoan Lines in Piraeus. I sat wedged in the front wrapped in a sleeping bag feeling battered and bleak. Going back to bed from 5.30–8am saved me. At 10.30am I had to meet the shipping clerk Xanthi whom I’d been dealing with on email and turned out to be as lovely in person as I’d anticipated. She confirmed there was absolutely no option for us to travel with the truck, as zero passengers were allowed in the port of Alexandria.

A thousand thanks to Xanthi Nannou and Mari Papagrigoraki of Minoan Lines

For the first time on this trip, Big Reg and family Sampson were going to be separated. I was trying not to find the prospect of travelling without a kitchen or a bed in tow terrifying.

We called in on the Egypt Airline offices and got more bad news – they were no longer flying direct to Alex and all the flights I’d seen online had been cancelled between Oct-June. I was praying we weren’t going to have to fly to Cairo and then bus or train north.

We parked near the Acropolis just before it closed at 6pm. I realised there was no way I could possibly walk up there but still it was awe-inspiring to look up and see the Parthenon lit up at dusk.

This was the closest I got to the Acropolis

But I was delighted by the stunning exterior of the  museum at its foot

and the exciting view of excavations in progress below.

I was even more thrilled to find it was only €5 to enter the award-winning Acropolis Museum and that wheelchairs were available; I promised myself that Zola and I would get back for a shufty before we left Athens. After the boys had enjoyed their souvlaki supper courtesy of Mma John, we moved the truck at 11pm to be nearer to the Egyptian Embassy. Sampson posed Big Reg as ‘broken down’ surrounded by Papi’s orange cones in a restricted parking zone so I didn’t have far to walk.

Ist Nov dawned 15˚C inside the truck. Sampson got told off for looking like a vagrant while doing his exercises on a mat outside the posh shops. On my way to submit our Egyptian visa application forms, I saw this guy:

sleeping on the pavement outside Louis Vuitton #This Is Europe

On my return, I called out to Sampson, bent over the open bonnet in his overalls looking busy, “OK we can go now”. He started revving the engine to raise the brakes’ airpressure so Big Reg could move off. This takes several minutes (and then it’s another five before the engine is warm enough to switch to running on waste veg oil).

As this sent a cloud of choking diesel fumes into the Stavrolexo Café, I glimpsed a glamourous young woman at the bar throw her hands in the air. So I got down and took our Greek translation of the letter of introduction into her to apologise. When I touched her arm, she was suddenly crying over her cigarette. In between sobs, she said sorry, it had just felt like the last straw: she had not been paid for 3 months, didn’t know how she was going to make her rent and just didn’t know what to do.#This Is Europe

What could I say? I hugged her and told her to keep in touch. I know she follows us on Facebook, so I hope things have cheered up a bit for you by now Adeliki xxx

Finally, thanks to a brilliant tip from the SA Embassy, we parked off outside the Olympic Velodrome.

At last, enough parking space for Big Reg

and loads of room to exercise

A thousand thanks to the Hellenic Cycling Federation for their hospitality

Zola was also having a tough day. Upon gentle enquiry, he admitted he was anxious about the upcoming crossing and also upset by reading facts in his EMS textbook about inequality in South Africa, pointing out ‘black households earn on average R7000 per month, while white households earn R62000 per month’.
“That’s almost nine times as much!” he said in a shocked voice.
God how I love that boy.

I was so glad he got royally treated on an evening out with Sejako and her kids (Susie 9, Kudzo 13 and Step 16). Zola went along with them to footie training, then the boys roamed around the mall together and got KFC. He felt very comfortable and really enjoyed their company, bless them for their kindness. I was sad to be too weedy to spend more time with their lovely mum.

* * *


I am an old woman:
Sometimes grumpy
Sometimes clumsy
And sometimes I cry
When it pains me too much
To pin up my hair.

I measure out my energy
Like a child, honey
Like a miser, precious gold.
I pace my steps
            my days
            my months;
To rush me is a violent crime.

O for matches to prop open
My brain’s sightless aching holes

Ever fumbling for reminders
                              of thoughts
                              of memories
                              of how I used to be.

Sometimes I panic –
And sometimes I am tranquil as a zombie.
Sometimes I think I am acquiring Patience;
And sometimes I think she is a cruel taunting little girl.

My ankles are thinner
But we are all old women
Bitterness rides us like surfers –
On calm days we care little for what we cannot do
On rough days what might have been
Is everything.

Last year I was an invalid.
Now at least I have the strength
To turn over in bed
To lift a cup
To think

To hold my head up and tell you:
            I am an old woman
            I deserve respect
            No I am Not content
            To sit in sunshine

Winter is ever within me
Withering my vitals.

* * *

As Sampson and son set to filtering the remainder of the oil we collected in France, I sat inside the Velodrome on their wifi sending out copious copies of documents ready for Big Reg’s boarding of the ferry and investigating flights to Alexandria. This was quite enough to do without the extra hassle of blagging TWO pets onto a plane. I spent three hours hanging on the phone to Turkish Airlines over three days sorting it out. When you’re feeling very ill, unavoidable energy-sucking admin is pretty much my idea of purgatory – especially as at the weekend, I had to chase everything up sitting outside their closed doors on a camping chair during howling rain and wind wrapped in a blanket.

The first call centre operator told me requests for carrying pets could not be processed until our flights were booked. But after I’d paid for our tickets, the second told me that flights shouldn’t be booked until pet carriage had been approved, adding that it wasn’t going to be €10 for the cat, as the first woman had quoted, but $70. Eeek.

Because I’m worth it

I followed up that request with an enquiry about Sampson’s ‘emotional support dog’: he’d done the research online and obtained necessary supporting documentation from a psychiatrist. But when I mentioned ‘Doberman Pinscher’, the operator said no, that breed was forbidden. I quickly backtracked and said I can’t remember exactly what it says on his pet passport, but it’s mixed breed and only a puppy…

On day three, as the boys were getting everything out of the roof box and packing it into Zola’s bedroom in the nose cone for safety, I found out the cat had been accepted, but the dog refused because it was a Doberman. “Oh no,” I said “that’s not the case, it’s a mixed breed, Doberman and other, and very small – under 7kg” and re-submitted our request, adding “I really don’t want to be separated from my husband as I’m a wheelchair user – if we can’t travel together we will need to refund our tickets at no charge because we were given the wrong advice about booking before making arrangements for pets… perhaps I should submit a complaint?” Over lunch, Sampson was going into a flat panic, already planning how he would have to travel overland separately with Monte, with no thought to how I might manage to extricate the truck from the port alone. Thankfully, the lovely Emre called me back to say our request came back approved. Alleluja.

We all slept better that night

This was nearly a ‘train smash’, but Zola had a bike one: pelting round the carpark on his trusty Merida, he bashed his face into the wire fence and put a hole in his new jeans. I think what most freaked him out was that the people sitting in a car next to him didn’t rush to his aid. Hmmmm.

Not a little boy any more, but a scary looking teen.

Out of the blue, ‘The Backpackers Greece’ contacted us on Facebook having seen the truck, hoping to hook up. I left a message asking for accommodation advice as we were putting Big Reg on the boat two nights before flying into Alexandria to meet it. They called back and said we could stay at their place in Plaka, a few minutes from Acropolis Museum, free of charge! Travellers know there is nothing more precious than the kindness of strangers.

Meanwhile Jen Brea’s ME documentary Unrest was at long last launching in US and UK with news about it breaking everywhere – I was simultaneously so buoyed by the coverage and so frustrated at not being able to see it.

* * *


Since I was a young woman, dancing
I have shrunk
My horizons, distilled.

I am no longer
Caring and carefree
But cared for.

I am silent
But I am not brave
I am tired
two years’ tired

I have clawed my way back to here.
Now I am struggling
To stand still.

My life is the fitful nightmare of frozen motion.

My ambitions sit beside me on the bench
Arguing with Patience

I look forward
Gathering myself to walk on.

We are all old women
Some of us are merely older than others.

I hope to be a wiser Old Girl
For this premature rebirth

I want to be ready to hug Patience to me
And swing her round, laughing

I want to dance again
On any old ankles

And be glad for this time
Pausing in the shade.

* * *

Those last three days in Greece were hectic.

The first day was one long slog, with the truck pulled over ‘broken down’ in No Parking zones all over Athens. Zola and I spent the morning traipsing up and down with Lucky in a carry case, dragging a reluctant Monte on a lead trying to locate a vet to get the pets signed off as healthy – bless you Dr. Calliopi Marouli and her assistant V.

It’s a good job they’re cute

After picking up our passports with visas from the Embassy, I trawled several supermarkets looking to stock up with rice cakes (as we were unlikely to find any in Egypt). We topped off the day with a late night sewage drop at a dump far out of town followed by a 23 point turn on the tightest corner ever on a narrow street of old Piraeus with me outside in a high vis vest holding back the traffic. I’ve never seen Sampson sweat as much at midnight in winter.

Day two we were finalising details on the Bill of Landing at Minoan Lines at 9am, before checking in with customs broker Mr Thomopoulos for clearance. We had lunch, washed up, locked down and Left The Truck. Eeek.

Three of us, with 4 cases, 2 bags of gluten-free supplies and 2 pets.

I’d been getting Lucky used to her carry case for a week. She still wasn’t impressed.

How we managed to transport Monte from Greece to Egypt

Big Reg was off on his own adventure on Grimaldi freighter the Grande Ellade…

The taxi driver I managed to flag down outside the port refused to take us when he saw Monte, but relented when we showed him the nappy and begged. When Sampson went into the Avis office to pick up keys, Zola and I hid with the pets outside. It was such a relief to pile our household inside that tiny rental car.

Plaka was soo trendy, with tiny winding old city lanes crammed full of smart cars, jewellry shops and expensive bistros teeming with hipsters. I remembered Barbs saying that the UK was at ‘peak beard’ in 2015 – Plaka was just getting there.

A glimpse of gorgeous Plaka – wish I could have explored

The Backpackers Greece greeted us warmly: the lovely Kiara is a vivacious natural beauty with a unique style, which brought to mind Angelina, Audrey and Amal  – masses of hair and brain. She’s studying Arabic and Islamic law. Her man Giorgos was a model of understated quiet like other adrenalin-junky thrill-seekers I’ve met – he’s a serious snowboarder. Check out their evocative 2 minute video of Athens here.

Giorgos Daskalakis and Kiara Tzivraili

This is a rubbish phone pic, rather follow their awesome travel adventures on Insta or Facebook 

for more pics like this!

and this!

It was so incredibly kind of them to go stay at her mother’s and leave us total strangers in their bijou flat with a pooing puppy and a freaked out kitten. The boys ate souvlaki again while I made gluten-free pasta in Giorgos’ mini-kitchen. I was beyond exhausted, but still unable to sleep with Monte whimpering from the bathroom all night.

Sampson holding the baby

Giorgos and Kiara’s cute flat was in the middle of this square

with some very truck-like space-saving design by Giorgos

Day three was my last chance to go to Acropolis Museum, and we were tantalisingly near. But Dr. Marouli had told us that we needed one more piece of paper to get the pets clearance to leave the country – an export document from the Ministry of Agriculture. I thought we might be able to get it done in the morning and go to the museum in the afternoon. But having left Zola in the flat minding the babies, Sampson and I spent most of day driving round the city searching for the right building – which turned out to be an unmarked office inside an unmarked block which was part of the Ministry of Transport – all to get two pieces of paper laboriously filled in and stamped by official vet Ms Aikaterini Dikaiou. We didn’t even get time to meet Kiara and Giorgos for lunch, because at 3pm we had to leave for the airport.

Rush, rush, rush…

(I try not to dwell on how a dog cost me a once-in-a-lifetime opportunity to visit the Acropolis Museum. I tell myself I’ll go when the British Museum gives the Parthenon Marbles back. And the Benin Bronzes. And the Rosetta Stone. And… )

How on earth did I manage to do all this when ME was making me feel so ill? Well, that’s the million dollar research question, isn’t it?

The first ME book I took off the library shelf in 1993 told me that we have a dysfunctional metabolism so our energy levels are like a heavily overdrawn bank account. The only way to get in control of the condition is to invest in rest. You must only ever do half what you think you can and ‘bank’ the rest of the energy for healing. Slowly but surely you will build up your reserves. It may take months or years but, if you can avoid unexpected outlays, you can get back in the black.

Of course, terms and conditions apply: funds can go down as well as up. It’s perfectly possible to do more than you should, push yourself beyond balance – I can ignore my shouting body and carry on talking and walking to get things done in a pinch – but the spendthrift never gets away scot-free. You always pay for it. Often with whopping interest.

But because you only see us pwME talking and walking and smiling, and not lying on a bed in the dark for hours or days or weeks afterwards, you think we’re making this shit up. And I understand. It seems unbelieveable to me too. Looking at me then, sitting dizzy in their flat smiling wanly but looking absolutely fine, Kiara and Giorgos will never believe that those three days took me three months to come back from.

But hey: I had no choice. I was prepared to do whatever it takes to get back to Africa.

Goodbye Greece, and thank you

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