Joining the Dots… Reflections on Corona and Compassion

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

Public information poster in Monrovia in 2014

1. On Killer Viruses and Perspective

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

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

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

We didn’t come back for 7 months.

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

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

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

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

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

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

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

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

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

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

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

2. On Surviving Social Distancing and Self-Isolation.

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

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

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

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

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

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

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

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

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

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

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

A more compassionate world is possible.

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

3. A Message to Margaret

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

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

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

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

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

Zola and Margaret’s generation need to stick together.

4. GrAttitude

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

Before the first death in our country –

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

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

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

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

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

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

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

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

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

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

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

5. Top Tips for New Homeschoolers

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

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

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

Homeschooling despite distractions, Ghana 2014

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

Dept of Health’s official COVID-19 news and resource portal

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So Near And Yet…

Written mid-November 2019

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

Us lot, all optimistic on the coast in August

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

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

“It’ll only take a day” said Sampson

Famous last words…

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

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

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

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

Big Reg’s berth in the vast Mercedes Commercial carpark

with a gaping hole where the engine should be

Dealer Principal Robbie Van Der Merwe

Super P.A. Maranise Abrahams

Service Manager Ashwin Dalthmum

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

The man on the frontline: Terence Nayager smiling under pressure

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

We were privileged to be invited to attend…

the launch of the new Arocs at NMI-DSM

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

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

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

Sashen looking very serious

Sizwe keeping his sense of humour about the whole thing

Everything out once again…

the whole engine…

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

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

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

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

Mercedes leading by example in GIVING this season

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

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

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

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

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

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

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

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

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

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

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

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

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

and generously provided us with a splendid new one

while Darren Potgieter of Cabris Driveline Technology serviced the gearbox

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

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

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

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

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

Before… the shocks last changed in Dakar, Senegal

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And thanks to workaholics Kevin and Roberto…

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

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

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

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

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

who always appreciate a laugh, no matter the stress levels

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

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

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

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

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

who made the BEST melktart!

Sis Lindiwe in the coffee shop

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

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

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

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

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

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

Missing these two fellers

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

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

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

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

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

Family Sampson just before leaving South Africa in 2013

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

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

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

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

The culprit

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

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

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

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

Remedial action 1: cervical collar

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

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

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

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

My pot for POTS

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

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

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

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

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

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

Remedial action 2:

using two travel pillows and a recycled plastic oil container


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

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

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

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

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

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

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

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

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

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

then rest

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

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

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

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

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

The bliss of being able to walk again

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

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

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

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

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

* * *

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

Gigi Joseph

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

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

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

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

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

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Climate Slave Reparations

Este é para Moçambique

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

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

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

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

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

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

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

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

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

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

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

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

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

Well, now is their chance to make amends.

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

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

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

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

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

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

And they chose not to.” 

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

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

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

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

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

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

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

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

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Egypt 5: Marsa Shagra – Reef Break

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

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

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

and his grandson, Ahmed, waving on the right

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

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

* * *

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

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

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

Back on the road

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

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

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

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

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

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

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

* * *

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

Marsa Shagra is so beautifully designed…

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

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

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

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

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

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

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

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

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

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

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

2018 on the horizon

* * *

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

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

O how I danced.

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

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

* * *

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

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


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

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

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

Lucky picks the best places to park off

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

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

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

With the best teaching facilities

so much information

and so many dive sites to choose from!

The kids were amped…

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

and get strapped in

This is no small operation

The equipment is top notch

And the comprehensive attention to detail is most impressive

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

Sampson looking like an old pro

So proud of my soggy adventurers

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

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

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

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

So much love…

surrounding this little feller

and he was having such fun with his friend

 – endless chasing…

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

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

Mr Hossam Helmy, founder of Red Sea Diving Safari

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

We were so honoured to spend this hour with him

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

Beautiful Marsa Shagra with its outdoor bean bag lounge

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

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

The cafe

The gift shop

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

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

View over the dive centre

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

Luxury tented accommodation

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

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

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

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

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

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

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

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

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

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

View from the restaurant

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

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

Sampsons were overwhelmed by the choice…

the scale…

and the attention to detail…

Not to mention the DESSERTS!!!

Hubster was in heaven

The bijou pastries deserve a close-up

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

Sampson was thrilled to meet this man and his daughter

who was crossing Egypt in a three wheeler!

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

Sam-friendly lunch made with love

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

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

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

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

Bless ’em

My little softies

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

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

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

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

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

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

Thanks a million Mr Helmy and all at RSDS

Especially Mr Rafiq

and Mohamed Abdelghany and Ahmet Magdy

We will never forget you

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

Ever optimistic, smiling through pain

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

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

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Egypt 4: Hurghada ‘Dog Tired’

Let me tell you a bit about my husband.

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

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

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

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

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

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

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

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

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

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

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

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

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

* * *

Leaving Cairo before dawn

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

Monte had got over his first fear of Ruby

and was rarely out of her arms while travelling

…puppy love 🙂

while these two were still mutually enraptured

The Red Sea coast is one long building site

Thousands of apartments for sale

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

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

Thanks Chef Mohamed El Hosseini, every little helps!

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

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

All the tourist buses stop at the magnificent Zafarana Food Court

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

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

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

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

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

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

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

So cute. But so exhausting to be around.

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

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

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

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

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

along with sea…

and sand…



and sand.

* * *

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

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

I felt sick.

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

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

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

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

That’s why I love him folks.

* * *

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

Welcome to Hurghada…

a town of hotels…

that trade on its eastern exoticism

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

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

and their Xmas preparations for European guests

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

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

FOMO cat hated being left inside during walkies

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

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

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

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

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

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

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

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

Wise beyond her years and not suffering fools gladly…

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

She needed a holiday, not more stress

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

Nastya really gets into the Christmas spirit…

And was so kind to share hers with us

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

Nastya with the youngest members of the Vashlyaev family

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

These two darlings are both such love-bundles

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

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

A spectacular hang-out for leisure and waterspouts

with gorgeous views of the El Mina mosque

not to mention the boats

where – for real – the adventur never ends (sic)!

Managing director Heba Shawky was a dynamic executive who looked to be in her late 30s and seemed to be living on cigarettes and coffee. (Sampson respectfully asked her to stop smoking after the first fag, which was very kind of him because I was too intimidated to admit that the fumes were about to finish me off.)

HEPCA MD Heba Shawky with Prof Hanafy

HEPCA the Hurghada Environmental Protection and Conservation Association was founded in 1992, by 12 local business owners who were passionate about diving but concerned how careless anchor practices were threatening to destroy their spectacular coral reefs. The non-profit initially installed 50 eco-friendly mooring buoys. Now they carry out 10300 private installations every year, all over the Gulf and the Red Sea.

HEPCA – doing an amazing job protecting the Red Sea environment

Ms Heba has been at HEPCA 12 years. She started in marketing but following her belief that “Passion is the thing”, became a self-taught marine biologist who loves dolphins and turtles. She’s the kind of woman who Gets Things Done – before she’d finished her second cigarette on the balcony, she’d sorted us out a waste oil donation from the Marriott. Heba Shawky is what I imagine a modern day Huda Sha’arawi would be like.

Great view from HEPCA balcony incidentally

We were very grateful that she made time to see us during a hectic week, in between consultations with her scientific advisor, Dr Mahmoud Hanafy, Professor of Marine Biology of Suez Canal University, and launching a new app for reporting infringers of Red Sea rules. Over the last quarter century, HEPCA has successfully worked to establish awareness of their violation. The next step, Heba says, is to implement enforcement.

HEPCA’s full staff numbers 600 with 12 in the Hurghada office and 120 in Marsa Alam. They have a huge fleet of trucks to collect, recycle and sell solid waste – by which means they soon aim to be independent of European funding. She says she’s become so obsessed with this target, she visits solid waste sites even while on holiday! (She was proud to tell me that Egypt had the first sewage system when renaissance Europe was still “drowning in their own shit”!)

We were escorted to the disposal plant so we didn’t have to drown in ours

The beloved founder of HEPCA, Amr Ali, died of a heart attack aged 45. Heba had been his deputy for 7 years and said they were “like brother and sister”. The Red Sea Defender boat was rechristened the ‘Amr Ali’ in his honour. At the Port Ghalib beach resort, they have a wet lab which hosts schools tours and university research. They even offer Masters scholarships. Heba says they “work like a company, but with the spirit of an NGO”.

Picture of Amr Ali outside HEPCA HQ

Heba says her main effort now is presenting economic evidence to back up the enviromental case – not focusing on ‘how good it is to preserve sharks’ but on how protecting the coral is best for Red Sea tourism figures: “The ocean is free and our most valuable possession.” She was interested in finding out whether or not their Bioboat, used for educational outings with school children, could run on WVO?

We never got to see HEPCA’s Bioboat, but we did spend some time admiring the marina’s ‘Massive Yachts’

We watched the boat’s reflection shatter as a school of tiny purple fish started jumping out when attacked from underneath by bigger ones.

In a second fascinating conversation alone with Heba, she gave me a potted history of modern Egypt. She described the ‘elegance’ of the Egyptian people before the ‘coup’ of 1952 (she didn’t call it revolution) that deposed the monarchy and marked the end of British dominance of the Egyptian state.

When the military took over, everything went down, she said. The Muslim Brotherhood was very naïve, the big boys of the military manipulated the banks and engineered monopolies in all sectors: agriculture, industry and business.

“Don’t get me wrong” she said “I love my army” – but in their proper role of defender, “not making pasta and baby milks”. Mubarak became a tycoon and stole billions. All money and authority was in the hands of ten oligarch families who monopolised industry: hotels, trucks… “We got nothing for our taxes, there was no investment in education or health, and as prices increased, the middle class were being crushed, like all over the world”. Heba thinks even the traffic in Cairo was designed intentionally to “keep them busy, keep them down”.

“Is it better now, since the revolution?” I asked.
“We don’t know,” she replied, “But we are most worried.”

Manners and ethics have changed post-2011. “Our language is different, more vulgar… we are not tolerant of each other as before. We are frustrated because what’s happening in the Middle East was predicted, like Trump in The Simpsons!” She bemoaned the increasing gulf between the haves and the have-nots: “We have kids taking Chanel bags to school and kids living on dumps eating garbage. But whatever happens, we mustn’t give up – we must never lose hope.”

When I asked her about being a woman in management, she denied that there were any barriers to promotion; at least in Northern Egypt, she insisted, women were at high levels in banking, media, marketing and the private sector. On her appointment, she warned the Governor: “Treat me as a man or I will act as a woman”.

Monument to Egyptian might in centre of town

We spent a couple of nights at the marina, and all the things to see made up for the  particularly pesky mossies. Ruby was playing us all her new music, and it was so great to have this injection of modernity! (This is how Zola got obsessed with Despacito and learning Spanish…)

We had a great berth in the carpark

Strategies for tiring Monte out…

…showed more success when Zola’s unicycle got mended by the marina’s in-house welder


just hanging out

It was quite weird to discover…

that Lucky didn’t like fish!

Not impressed… preferring crisps, lettuce or popcorn

Ruby was feeling down in the pre-menstrual dumps, so I pushed myself to take her Xmas shopping along the Sheraton road outside the Marina, trawling through all the tourist shops. She spent a long time choosing matching bracelets for herself and two school friends. Several shop-keepers laughed in our faces when we said we were South African: “But you’re white!” Ruby got quite offended. Here in north Africa there seemed to be far less awareness of South African history than on the west coast; sub-Saharan Africa is assumed to be 100%black.

Hurghada fashions…

crammed along downtown sidewalks

I was tempted by the cosiness of this pink-fake-fur-lined coat but it wouldn’t fit in the wardrobe

There were some very smarmy operators, but in ‘World of Sweets’, we loved softly-spoken shop assistant Tariq as much as the gorgeous pistachio creations. He was a Syrian refugee and had only been there 15 days. He told us he was qualified in IT but sacked from a job in Cairo because he was not Sunni Muslim. He said it was proving increasingly hard for him and his brother as they attempted the trek to safety:
“In Sudan they black but heart is white; in Egypt the skin is white, but the heart is black”.

Tariq seemed scared verging on paranoid, warned me not to give him our web address because we were on camera, and rather passed his details to me screwed up in a tiny scrap of paper while shaking hands.

I sadly don’t have a pic of pistachio sweets but you can imagine the display if this is what you get just in a dried goods store: bissap petal tea bottom right

I didn’t blame him, I was feeling a bit paranoid myself. Today was the second time Mom had a recording of her own voice played back to her after speaking to me on the phone. Whether this was a warning or an example of incompetent surveillance we couldn’t tell – neither was reassuring.

This was the week of the ANC conference when Cyril Ramaphosa beat Nkosazana Dlamini-Zuma to the leadership. This was also the week we watched Sense8 with Xmas treats: pomegranates for me and homemade halva-sauce for Sampson’s popcorn. Having been drawn to pomegranates in Greece, it was only now I found out that they are anti-inflammatory. They certainly give me a boost (as hibiscus/bissap tea or coconut water does) but they were proving increasingly exhausting to eat. My kind husband began patiently decanting seeds for me every night so I didn’t have to pick out each one individually, holding up my arm for unsustainable amounts of time. It took me a whole evening to eat half a pomegranate’s worth of scarlet gems. But I slept so much better afterwards with the pain in my brain stem slightly eased.

Sampsons’ treats: Hurghada did the best chocolate halva in the whole of Egypt

and for me: a pain-relieving bowlful of perfectly ripe pomegranate gems

I was determined to go with kids on a glass-bottomed boat trip, but the day we’d booked it, I felt so ghastly first thing, I didn’t think I would make it. By mid-morning, I’d rallied enough to risk it and luckily guessed the right clothes to cope with the aircon. We boarded with lots of Chinese, Russian and German tourists and went straight downstairs to check the glass-lined third deck below the water line.

The Happy Dolphin

Welcome on board!

Beautiful view of marina as the boat pulled out of the harbour

with another gorgeous perspective on the mosque

Down below the view was even more spectacular

The coral was darker than I anticipated…

subtle shades of blue, yellow, brown and purple…

all in muted tones…

crazy shapes from fractals and potatoes….

to brains and trees…

We sat mesmerised… Sampson was horrified that the rest of the kids on board were playing on their phones after the first five minutes.

The pro diver went out trailing fish food to make a splash.

When the three Sampsons jumped overboard to snorkel…

boat staff were marvelling at their strength…

how they could hold their breath…

for so long…

and kick around…

so deep…

I was so proud!

It was marvellous to see schools of fish moving freely…

the ones that looked like zebra, or the ones that looked like pens…

big blue and purple ones, little yellow ones, black darty ones, slow fat ones.

Not so happy to see the ubiquitous plastic bags spoiling the view

Unexpected bonus was lying on the supersoft leatherette cushioned floor of top deck eating popcorn…

…for the ride back to harbour

That was more than enough excitement for one day but the Arabia Azur Resort was expecting us to come and collect oil. On arrival, GM Maher About Elnour swept down and invited us in to eat – I stayed behind because I was exhausted and had to rest in preparation for the truck being open for visitors as he had advertised at 3pm.

The fabulous Arabia Azur Resort Hurghada…

is justifiably famous for its magnificent Christmas feasts…

with a menu in three languages: English, German and Russian…

not to mention its stupendous Xmas decorations…

made entirely of chocolate!

Check the loving attention to detail…

The family were escorted back by a live band: two drums, a tabor and a flute!

Crowd of about 50 guests had gathered – of course the Germans came early!

Sampson did an impromptu speech, without mic, with translation assistance of rep Michelle

Wonderfully generous GM Maher Abou Elnour shamed me with his up to the minute Facebook coverage – he even had a live feed going on!

Thanks also to the lovely Amira Kotb, PA to the GM at the Marriott Beach Resort

who donated 100L waste cooking oil to us as part of their innovative Green Star programme

The Green Star green capacity-building programme that Amira from the Marriott told us about is a laudable initiative of the Egyptian Ministry of Tourism implemented by the Egyptian Hotel Association which offers an opportunity for hotels in Egypt to be internationally recognised for raising their environmental performance while reducing operational costs.

The Marriott was aiming to increase its number of green stars from 3 to 5 over 2 years by replacing all lights with LEDs, installing lower water pressure valves in all bathrooms and converting all kitchens to natural gas. This had been further spurred by an 170% rise in the price of electricity in a single year!

We urge you to support Green Star Hotels such as the Marriott and help pave the way to responsible tourism in Egypt.

The Marriott Beach Resort is another stunning hotel, with its own marina

Kids got to play in pool while I rested.

The main whack of PEM from the Happy Dolphin/Arabia Azur activities hit me two days later, after Italian Marta Gambarin at the Blue Moon Vet had given Lucky the chop, and both pets their necessary vaccination cocktail.

The suffering was random and relentless. I’d wake up in deep pain because I’d fallen asleep on top of my blanket and my muscles got cold. Or I’d fall asleep in my sleeping bag and wake up with my nightclothes drenched in sweat because it was so hot and humid. Sometimes, I felt I couldn’t breathe despite the hatch and the sidedoor being thrown open.

Lucky feeling as wiped out as me

I got up on the second day feeling so wobbly and so grim, thinking about Anastacia and whether I should phone when there was a knock on the door – and there she was! She’d caught sight of the truck by the Marriott on her way back from dropping the kids at school and came to see how we were. She was so genuinely delighted when I asked if we could come back – I felt the universe was blessing me with a kind friend when I was desperately in need of one.

* * *

Relapse for #pwME is like the slow motion plummeting off a cliff in a cartoon – no matter how much you flail, you’re going down. When you’ve overdone it and gone too far, no amount of Wile E. Coyote arm-flapping or back-peddling is going to save you from the crash. There is just the horror of the disappearing long drawn out scream…

* * *

Dec 22nd was the first day when T’ai Chi didn’t make me feel better. One short form proved too much, I had to come in and lie down. By 4.30pm I was still not showered. Brain fog had descended like the blanket over Table Mountain, swathing my senses in a shroud too heavy to shrug off.

We went back to the Russians’ to do oil filtering. Ruby had come down and slept on the floor under a net because she was being eaten alive by mossies up in the nose cone, so Sampson took to sleeping in the tent despite single digit temperatures. As a result I was no longer being disturbed by Monte, but by now it was too late and things had deteriorated too far – even better sleep wasn’t helping me pull back. I was still dizzy, still couldn’t stand up, my arms were still useless from holding the camera for an hour on the Happy Dolphin. While the Sampsons went off to the station for Zola’s first kitesurf lesson, I just managed to put another wash into Nastya’s machine, then it was back on the bed for the rest of the day.

Zola’s first kite surf lesson – a wonderful Xmas present from Alex

He loved it

I wasn’t up to writing or clearing the 1000 emails clogging my inbox. I was struggling to read. Reviewing the notes I always keep in the front of my diary, I was shocked to realise how few books I had got through this year (six, with The Power by Naomi Alderman, a gift from my best friend my fave) and to realise that, even with menopause kicking in, I had probably had more periods than sex. Bloody hell! It was dawning on me that I must be disabled – both facts are so uncharacteristic of me…

Zola came back in such a good mood, he volunteered to cook dahl while inside Ruby was making cupcakes with the kids. After finally managing a shower, I gathered myself to visit Anastacia inside for half an hour, to look round their lovely house full of Xmas decorations and mountains of LEGO!

Christmas cupcakes made by the twins

(Looking at lovely little Lisa, the thought of deliberately ‘cutting’ millions of girls as young as her, condemning them to a life without sexual pleasure and with constant pain from infection and tearing seemed beyond cruel, almost beyond contemplation.)

On Christmas Eve, I was woken by Zola tumbling down from upstairs to land on his knees next to me and vomit into the loo. Sampson appeared to be suffering the same plus diarrhoea, but Ruby was fine. I was feeling nauseous but that’s normal for me, so I thought I too had escaped the bug. I ate a banana, and left a clammy Zola cosied up in my bed nearer the toilet. Ruby rolled her eyes at me as Sampson lay groaning on his. Us girls went inside for a holiday salon session: I cut her hair to a bob and she helped me shave the back of my neck and trim the rest before my arms gave out.

While the boys spent the morning in their sickbeds

Christmas haircuts 1

Christmas haircuts 2

While Nastya took Ruby food shopping, I wrapped colourful scarves around random things I’d squirrelled away for pressies. My complete Xmas prep took all of 10 minutes. GOD HOW I LOVE STRESS-FREE TRUCK CHRISTMASSES! I know lots of people adore the anticipation and the build-up to the big day but for pwME it’s just another exhaustion-creating burden. I managed a shower to get rid of hair clippings, then slumped. I fell asleep on the bed waiting for supper.

Xmas morning 2017, listening to Cabin Pressure Xmas special as is traditional in the truck

Our 2017 Xmas day presents were mostly bought on the Sheraton road: a pack of Egyptian playing cards for Zola, a cotton dress for me, a kilo of chocolate toffee eclairs for Dad. Ruby got Italian biscuits and second hand Milanese fashions from Luca’s house. She went in to start preparations for the meal with Nastya, who chatted to her about how, because her Dad was Costa Rican, her dark hair and olive skin made her a target for bullies at school in Russia who called her ‘n*gger’.

This pale girl on the left? Shoo, everything’s relative né?

I rested the whole day trying to save enough energy to be able to join them for the evening meal. While Ruby was cooking and baking, Zola had his second kitesurf lesson – he got up on a board this time. If you want to learn, get yourself to Playkite in Hurghada!

Zola’s 2nd kitesurf lesson

He was “a natural” apparently. Of course.

Alex was brought up in the forests of the Siberian Urals, and has that hardy, almost-indestructible vitality of James Bond – as well as the charisma. He is passionate about his sport and an inspirational leader of an international kitesurfing community at Hurghada. He must have been bemused by my constant disappearances but was far too much of a gentleman to comment.

Alex didn’t lift a finger to help with the meal – but then neither did I. He was telling me that so many Russian men died in twentieth century wars, there are now 3 million more females than males. In Egypt the gender gap is the other way round, perhaps due to selective pregnancies. As a result, many Russian women come to Egypt to find husbands. Apparently, there are thousands of Russian wives in Hurghada alone.

However, Alex was also telling me that Russian tourism to Egypt collapsed overnight following the alleged bombing of Metrojet flight 9268 from Sharm el-Sheik in 2015. His kitesurf business only just survived the banning of direct flights to Red Sea resorts by the Russian government, which have yet to resume.

We were late to eat the roast chicken, Sampson’s ‘Jamie’ potatoes and roast carrot and peppers mix prepared by Ruby. As is traditional, Zola carried on long after everyone else had finished, methodically stripping both carcasses to the bone. Sitting on a hard chair under lights that felt way too bright, I kept having attacks of sweats as my body struggled to cope with being upright for so long. But the family were so sweet and the occasion so lovely, I didn’t want to spoil it by bowing out early.

What a spread…

(great job Flopsy Mopkin!)

…and what wonderful company

with a little bit of Christmas magic…

and juggling of Christmas fruit…

and cuddling of Christmas dogs…

We felt surrounded by love

and puddings!

After the meal, Alex got out his Cajon box drum, harmonica and guitar to entertain us, even attaching shakers to his toes. I longed to join in, to dance and celebrate, but my whole body was shouting in pain at me.

One man band extraordinaire!

One day I hope to show Alex the dance moves his music deserves

After supper, Zola begged me to turn his dreads into a funky Mohican – we got 2/3 of the way through before I had to abandon the attempt as my arms were hurting too much to hold up the electric shaver.


AFTER: Christmas haircuts 3 – this one took 2 days to complete

We got to bed at 10pm. I knew I’d overdone it but I was still shocked at how bad the fall-out was on Boxing Day. T’ai Chi was really really tough to get through, but I managed it with rests in between each form and it worked a bit to ease the extreme pain and nausea. Sulphuric burps showed me I hadn’t escaped the boys’ gastro bug after all, I just hadn’t realised I had it because feeling that ill first thing in the morning was now standard for me.

Once again, I had to give up on the whole day and lie down. I managed to write a bit to take my mind off the pain. I couldn’t stand up to shower so spent all day in T’ai Chi clothes, and slept in them too. I had fever in the night, but on the third waking knew I was over it when the bed finally became comfortable. Ruby had fed me crackerbread so I could take Ibuprofen; pain that bad was worth the resultant pressure on my stomach.

My main memory of Hurghada – on my bed

Liquid digestive probiotic saved me from the effects of the bug dragging on too long. I can’t thank Probio enough for sponsoring enough bottles for the trip, though it seems the company have gone under since we left. Meanwhile Sampson was filtering oil, Ruby was taking Monte for a walk and Zola showed he was fully recovered by eating 14 cupcakes…

It was hard not to feel left behind

When I was feeling a little bit stronger, I went to talk to my husband, wanting to be honest about the distance growing between us. I didn’t want to make the mistake again of assuming my most loved ones understand my situation and thus interpret their actions as cruel when in fact they are just oblivious – I thought I need to spell it out before we are broken too. I wanted it to be positive sharing, but he got so defensive I ended up crying. When you can’t hang on to a train of thought long enough to express it, it’s difficult to resolve anything.

I even contemplated going home with Ruby for a few dog-free months during Cape Town summer to recover my strength. But who would teach Zola then?

I longed for a shower but chose instead to put on jeans and walk 200m to the sea. It had been eluding me for nearly a week. As Sampson and Zola took Monte for another bike run to tire him out, Ruby arrived back sporting a present from Anastacia: a turquoise manicure sprinkled with silver Xmas trees – I was so grateful to Nastya for spoiling her in this way, but also so sad I couldn’t go out and treat her myself. I was terrified how Ruby’s time with us was slipping away but felt way too foggy to plan how to make the most of it.

Ruby’s Xmas manicure

So grateful for small mercies: Egyptian cream cheese and figs…

on the very last of my delicious Italian gluten-free crackers

I had descended into insomnia purgatory: the pattern of spending a gruelling 12 hours in bed to get 7-8 hours sleep had become standard. I had taken to rolling gently on the old cinnamon pot again to relieve the intense pain at the nape of my neck: it was a like a very focussed massage on the two throbbing points at the top of my spine.

My pot for POTS: pain relief when all else fails

During a day of collecting oil from Palm Beach and AMC hotels, Ruby was helping me back to bed after lunch when I fainted and she caught me. Lying down afterwards I was wondering what on earth I could do to rescue this rubbish holiday vibe for my kids when a lovely Geordie family came to the door. They were so admiring and envious of our Adventure, they reminded me just how special what we have is: I don’t need to Do more, just Be. Thanks for cheering me Debbie and Colin.

Blessings on Colin and Debbie Hawley, their two sons and Nan and Grandad

That night I took painkillers and went to bed at 10.30, but was woken by Monte before 12. Explosion of pain.

pwME should never be woken from deeply needed sleep. It’s a violent assault. All senses shoot to overload. Every sound was magnified – poo bags rustling, pill bottles rattling, Sampson’s belt on his jeans jangling as he pulled his legs in. I could have maybe got back to sleep after the getting out, but it was impossible after the getting back in with scampering dog.

It’s horrific to know your day is already over when it’s only midnight. My guts were churning from recently swallowed Ibuprofen, the initial discomfort I usually sleep through. Worse was my heart: every time I woke, my body sprang to full fight-or-flight response, flooded with cortisol, adrenaline pumping. This was happening 4 or 5 times every night. My body was as exhausted as if I was running from wolves every time.

No wonder I wrote “This is killing me”.

My diary for this time is patchy but there was this:
“I have never been – have never put myself – in such a dangerous situation. In all these years, whenever my parents or my husband accused me of overdoing it at work, I have never pushed myself past my limits like this. I am now frightened I may never pull back from this state… If I did a drop faint yesterday, will I now start passing out regularly, like severe M.E. patients? Blue lips et al? There’s no ambulance service in Sudan. I need to start recovery NOW not push it another 3 months till Monte’s trained.

This is not a me vs dog decision: it is about the survival of the family. If I am not on my feet, who is going to do borders? Face off police? I am a better guard dog than Monte will ever be. If this pain was happening to one of the kids, there would be no question of keeping this puppy. Why isn’t my husband looking out for me? Or seeing it in those terms? Choosing this pain for me. Denying me the capacity to walk. Muscle tone could take a year to get back. If I’m lucky.”

Patchy and ugly in places but trying to make something beautiful from it

The only entry for the following day says:

That’s POTS vertigo too disabling to function at all.

One day we hope

to return the hospitality of this fabulous family

and show them Cape Town – and the real me

Благослови вас обоих за вашу доброту

* * *

I was so frustrated because I had so wanted to be up to date with the blog by the end of 2017 but had been less and less able to write since winter got me by the throat and brought me down in Croatia.

But then I read a blog by severe M.E. sufferer Anil van der Zee, a former ballet dancer in the Netherlands, confined to bed for the previous 5 years, who had a ‘better’ year in 2017 because he saw 4 visitors (on consecutive occasions) in the entire year.

That’s 3 more than he did in 2016.

Anil van de Zee, bedbound Dutch M.E. activist

I don’t have many heroes, but Anil is one of them. His grace, his humour, his spunk defies it all. Please take the time to read his account of having someone come into his home to administer a saline IV. It might help put your life in perspective too.

Anil made me feel better about my year. It was now taking me 2 hours to come round and get up and I might have lost my capacity to walk in the mornings. But I could live with that if we were still moving, and I was still watching out of the window.

On my worst day that December, in the middle of the hour necessary just to take down my net and make my bed, I was looking at the golden light streaming through the window and remembered that, in early 1995, if you’d told me I would one day walk again, dance again and go travelling around Africa in a truck with my family, I would have been so f*cking thrilled I would have cried tears of joy. I resolved to hang on to that memory. Hang on tight till the next beam of light.

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“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.

Finally we made it to Giza

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.”

Ruby Ruby Ruby ROOBY!!
More… everything 🙂

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. 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”!

Huda Sha’arawi 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.

Huda’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 , , | 7 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

* * *

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 to see if she makes it home to South Africa.
Facebook: Africa Clockwise
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Twitter: @samfleurpearce

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