Remembering Retha

On Sunday 12th June, Mlindeni and I went to visit Retha for the last time. As Sampson drove us along the coast for an hour and a half to her friend’s flat in Strand, I lay in the back of the car on a mattress wedged into the boot and tried to keep calm. It’s the only time I’ve left this place since we moved in.

Retha looked distressingly frail, but was as vivacious as ever. We three packed a lot of joy into the 90 minutes we spent together, while Sampson bonded with Boet. Although it was apparent she couldn’t continue to survive the onslaught of the cancer that was drowning her in ascites, Retha had defied the odds for 2 years already, and her spirit seemed invincible.

Four weeks later, she was gone.

Even though her passing was anticipated, the tsunami of upset through the week of her memorial was devastatingly depleting for the Whatsapp group of mostly bed-bound folk she used to watch over. Writing Retha’s obituary was a way to channel my grief and uplift our collective sorrow. To stand witness to this darling woman’s life, her bravery and her defiance of the shackles suffering imposed upon her.

It was published in the Daily Maverick 168 newspaper on 30th July but, to mark Severe ME Awareness Day 2022, I am publishing the uncut version here so the links might be available as a resource to people with ME or Long Covid. As someone with severe ME, able only to work for an hour or two on my bed in the afternoon, to put it together and then recover from writing it took me the best part of a month.

NB: Most news outlets are still using ‘long Covid’ but I am following patient-led resources in using upper case for both, dignifying their disease with its own name, recognising a pathology in its own right.

* * *

An Angel and a Warrior: Retha Viviers, founder of The ME CFS Foundation South Africa

By Sam Pearce

Retha Viviers (28 October 1966 – 10 July 2022) always said “We can’t change the cards we are dealt, just how we play the hand.” 

In 2002, Retha Viviers was struck down by mysterious persistent sickness following a series of infections post-surgery. She was 36, her daughters were 10 and 2. Gradually, her chronic rhinitis and severe headaches progressed to being unable to tolerate standing up, let alone the running or hiking she loved. 

Born in Germiston in 1966, Retha’s economics degree had taken her from market research to strategic planning in heavy industry. However, by the time she was finally diagnosed with Myalgic Encephalomyelitis (ME) in 2006, she was housebound and unable to work. The loss of her income put great strain on the family, which was compounded when her eldest daughter was also diagnosed with post-viral ME aged 18, confirming a genetic vulnerability. 

With no drug regimen and no specialists available in this country, the outlook was bleak. In 2012 Retha formed a closed support group for ME/CFS on Facebook and became aware of the desperate needs of hundreds of chronically ill people. This gave her a new purpose and she founded The ME CFS Foundation South Africa in 2015, an NPO dedicated to providing support and advocacy for this invisibilised patient population, trapped in their bedrooms. Despite starting every day feeling like she had a hangover, heavy flu and veins filled with cement, Retha administered it by sticking to a strict regimen of lying down to rest for an hour after every three hours’ online.

“Nothing about us without us”

The course of Retha’s lifetime mirrored the history of energy-limiting chronic illness. 

‘Benign Myalgic Encephalomyelitis’ was the name given by Dr Melvin Ramsay on identifying the polio-like syndrome displayed by 292 staff at Royal Free Hospital in London in 1955. There had been many other outbreaks showing similar inflammation in the brain and spinal cord, such as those affecting 198 people at the Los Angeles County General Hospital in 1934 and another 488 in Iceland around 1948. 

In 1969 ME was defined as a neurological disease by the WHO. But in 1970 two male psychiatrists reexamined Ramsay’s case notes and decided, simply because most of those affected were female nurses, that a more likely explanation was “epidemic hysteria”. McEvedy and Beard came to this conclusion without interviewing any of the patients themselves, many of whom remained too ill to work decades later. 

Their misogynistic hubris led to bias, stigma and staminism that was to stymie funding for biomedical research into ME for half a century and blight the lives of millions.

In 1984, another mass outbreak in a super-affluent suburb near Lake Tahoe, Nevada prompted the coining of the tabloid moniker “Yuppie Flu”. The US Centers for Disease Control renamed ME “chronic fatigue syndrome”, further trivialising the disease. Conflating it with other conditions causing fatigue (such as depression) prevented recognition of ME’s hallmark symptom post-exertional malaise, where sufferers crash with dramatic worsening of symptoms from 24 hours after any physical or mental exertion.

By the 1990s, an increasingly influential group of psychiatrists and psychologists were dominating the field of CFS research. Their insistence on a psychosomatic rather than organic cause for the disease was most convenient for both governments and medical insurers seeking to avoid paying out disability grants.  

This collusion reached an apex in the infamous PACE trial, a £5 million research project partly funded by the UK Dept of Work and Pensions. Results published in 2011 seemed to prove the efficacy of graded exercise and cognitive behavioural therapy, but heroic efforts of citizen scientists exposed huge flaws in the findings, such as changing criteria for recovery halfway through the trial. More than 100 researchers and clinicians signed an open letter to the Lancet requesting an independent reevaluation of the study and demands for an enquiry were made in the UK Parliament.

A seachange in the narrative about ME was marked in 2017 with the groundbreaking Oscar-nominated documentary Unrest by Jen Brea, in which Retha appeared. Finally people with chronic illness were telling their own story, in the spirit of “Nothing about us without us”.

Relentless advocacy by ME organisations finally led to an overhaul of CDC definitions in the US in 2017 and an updating of the UK’s NICE guidelines in 2021 banning graded exercise therapy as harmful. 

Missing Millions

There are #MillionsMissing due to ME, which is twice as common as MS. 25% of them end up bed bound and unable to cook or care for themselves. The most severe don’t have enough energy to swallow, have to be fed via tube or intravenously and suffer periodic paralysis. Noise, light and even touch are excruciatingly painful. 

How do you cope when you have a disease without recognition, when doctors refuse to treat you and hospitals turn you away? When you are too ill to march in protest?

You seek comfort in solidarity. 

ME support groups online are the tightest bunch of friends who’ve never met each other you’ll ever find. Not only did Retha personally provide medical resources, basic living necessities and even emergency housing to hundreds of desperate individuals over the years, but the networks she created sustained thousands of people. 

Retha’s efforts to get the disease featured on Carte Blanche in 2017 brought ME to the attention of the South African public for the first time. Her descriptions of her existence helped families and colleagues understand what patients were going through. Annually, she led online campaigns for International ME Awareness Day on 12th May, Florence Nightingale’s birthday. (It is suspected that Nightingale suffered from ME as, after contracting bacterial illness in the Crimea, she spent most of her latter years bedridden.)

But mostly it was Retha’s weapons-grade empathy which inspired a culture of care and mutual aid in the local ME community. She checked in daily via Whatsapp with dozens of bedridden people too ill to be on social media, and gave them enough hope to endure.

Links to Long Covid

In January 2020 Retha was diagnosed with advanced ovarian cancer. When the public health system gave her a few months to live, the community she had created refused to accept it. A crowdfunding campaign raised substantial amounts for private treatment which prolonged her life for more than two years. 

Despite the gruelling burden of chemo and surgeries, if anything she stepped up her work from her bed. 

In July 2020, Dr Anthony Fauci commented that an emerging pattern of extended Covid-19 symptoms (chest pain, muscle and joint pain, inability to be upright, heart palpitations, shortness of breath, cognitive incapacity, nausea plus an overwhelming exhaustion unrelieved by sleep) was “highly suggestive” of ME. Retha opened her support group to our Long Covid cousins during the critical period of the pandemic when knowledge was thin on the ground. People with ME who had been living in lockdown for decades and already experts at surviving social distancing were ready to offer the advice they were not given – particularly the critical need to Stop, Rest, Pace to avoid permanent disability. 

When Professor Resia Pretorius published her groundbreaking study on microclots in Long Covid in 2021, Retha approached her to suggest an investigation into whether there was similar coagulation pathology in the South African ME population. With ethics approval granted, Retha set about asking for participants and dozens of volunteers from her Foundation networks enthusiastically donated blood samples to the study in early 2022. 

Investigator, PhD student Massimo Nunes, states that “preliminary findings suggest similar abnormalities in the coagulation system of ME/CFS individuals, comparable to that found in cardiovascular disease”. Although results need to be corroborated with a larger sample size, they may lead to the discovery of novel inflammatory molecules involved in the pathology of both ME and Long Covid.

Evidence of hypoxia compromising oxygen delivery to muscles, as well as reduced blood flow to the brain, suggests that if our disease had been renamed ‘chronic oxygen starvation syndrome’ in the 1980s rather than being dismissed as ‘psychological’, there might have been treatment for Long Covid sufferers by now.

In late 2021 Retha did a publicity drive including another Carte Blanche feature on the links between Long Covid and ME which emphasised how the pattern of institutionalised gaslighting was repeating, with governments and medical insurers denying benefits to millions more sufferers.

In the months before her passing, Retha was still supporting the Foundation’s Long Covid ambassador Mlindeni Gabela’s attempts to alert the media to the fact that, if 1 in 10 people develop chronic illness after Covid, our government should not slavishly follow UK and US policy abandoning mask mandates but heed the huge risk that post-viral disability poses to the economy.

Death of a “pure angel”

Retha died aged 55, exactly the mean age of death for people with ME. Although ME has only rarely been cited as a direct cause of death, life expectancy is significantly lower than average, as well as offering a lower quality of life than multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and cancer.

The news provoked an outpouring of grief, not just from across South Africa but across the globe. Her kudoboard displays personal messages from the Netherlands, Germany, Italy, France, Spain, UK and USA as well as tributes from Canada’s Open Medicine Foundation, the World ME Alliance and ME organisations in US and UK, Ireland and New Zealand. 

The same phrases come up repeatedly: “A pure angel”, “fierce warrior”, “a truly great friend” “mischievous sense of humour”, “steadfast support” and “Love personified”. 

Her “dancing eyes and wide smile” will never dim in our memories. With her style, grace and never-ending compassion, she gave us all dignity. Retha was dealt a tough hand but played it with aplomb and always a trick up her sleeve. Hope was her joker, and she taught us to hang onto it for our life’s worth.

Contribute to Retha’s #ImHopeful Legacy Fund on The ME CFS Foundation South Africa website.

Thanks to Boet, Claire and Stephanie for sharing her with us, and supporting her to help so many xxx

#LonghaulersUnite 3: Spotlighting Staminism

This one’s for the MEeps and the LoCos

Before you can tackle something, you have to name it.

Before sexism and racism were acknowledged as concepts, addressing these issues on an institutional scale was practically impossible. Witness the emergence into public awareness of homophobia last century and transphobia this century: until such behaviour was named, society could continue to pretend such injustice wasn’t happening.

Ableism is a term that has come to be associated principally with access and mobility issues and secondarily with slurs and patronising or even infantilising attitudes to those with visible disabilities. For me, ‘ableism’ does not (yet) encompass the span of egregious experiences the Sick have to endure.

The chronically ill need a word to draw attention to the disdain, discrimination and danger we are exposed to because of our invisiblised disability.

To be treated like you’re making this up, to be turned away from the ER when your heart rate is triple what it should be, to be forced to exercise despite potentially perilous consequences – this is abuse of the Sick at the hands of healthcare practitioners who have zero appreciation of their privilege as Well people with an infinite supply of metabolic energy. If there is a backpack of White privilege, there is also a backpack of Well privilege, and it’s stuffed full of spoons.

For the last few years, I have mostly been unable to read due to reduced capacity to both hold up a book and hold ideas in my head. I save my energy for writing whenever I can. So forgive me if I have missed publication of some conceptual theory that addresses this gap in language.

Last week, I was wrestling with options for the concept I’ve been grappling to express: ‘energism’ didn’t grab me (plus a ‘jism’ would never be taken seriously in the UK). ‘Capacitism’ or ‘chargism’ (as in ‘assumption of full batteries’) didn’t work either. ‘Metabolism’ was catchy, but a bit too left field?

In the end I settled on ‘staminism’.

The Well assume that those of us without physical, mental or emotional stamina are weak, when in fact we are managing to operate despite massive deficiencies in cellular metabolic capacity, brain chemicals or hormones. We are not weak, we are under siege.

A respected friend told me of our beloved Brianne Benness’ coining of the term ‘stabilism’ to highlight unfair public dismissal of conditions with fluctuating severity a.k.a. dynamic disability. It is vital to highlight that people who occasionally need mobility aids should be allowed to exist as ambulatory wheelchair users or to lie down without being accused of ‘faking’. In the face of the withering judgement of late stage capitalist society, we need this word to push back against an obligation to explain our symptoms or perform disability.

But alongside demanding recognition of disability-fluidity, there is a more pressing need for acknowledgement of limits that should not be routinely questioned because of the huge risks involved for Longhaulers. Quite apart from the sheer rudeness of telling someone “You don’t look ill” or that you “should” be able to do something, guilt-tripping Sick people into pushing beyond their energy boundaries can cause a serious deterioration of their condition. Staminist bullying can put the Sick at risk of becoming permanently bedridden, condemning them to a state of severe illness and constant pain the Well cannot even imagine.

* * *

We moved house on Saturday 4th June. Or rather moved truck. Emptied most of it out into this little holiday cottage by Fish Hoek beach where we’re going to spend the winter while Big Reg goes to the garage.

We are privileged to be able to afford help to manage the move. Sampson unloaded the roofbox with the assistance of muscleman Terry from Zim, a gardener with a degree in accounting. From 12-4pm, with a lie down in the middle, I packed stuff into boxes which my friend Marlene from Ocean View carried across the lawns to the cottage before unpacking them into cupboards. She lifted all the heavy stuff, like tins. But still, this was the first day for a very long time that I knowingly, inevitably, pushed myself beyond my limits.

It kicked in at dusk. Extreme PEM is such a bizarre reaction. Stage one was the onset of extreme pallor and an urgent need to lie down in the dark, accompanied by a feeling some describe as “fizzing”. For me, it’s like my whole body suddenly tips into pinball emergency mode: TILT!!!!! It felt like deep physical shock, with every cell clanging an alarm. Internally there was a sense of flashing lights, buzzing electrical shorts and high alert. As if my fight-or-flight mechanism had gone haywire and was pinging around inside.

My temperature started veering wildly – a sudden drop to bone cold followed by a hot flush, then my favourite combination: cold sweats, urgh. Even after eating a substantial meal, I immediately felt hungry again, as if my body was starved of fuel. Stage two is too-tired-to-sleep, though I’d gone way beyond exhausted. I felt so wired, I couldn’t reach deep sleep and only managed to doze, waking over and over through the night.

The next morning, even though I was hobbling like a pensioner and feeling grimmer than usual, I experienced a brief period of “Oh…maybe I got away with it?” But Longhaulers know better than to greet this false dawn. You still have to hold back, because it’s only 24 hours after the main exertion when the true consequences hit you.

In the mid-afternoon, I risked a 10 minute perambulation in the sunshine, got back and lay down straight away. When I tried to get up half an hour later, it was like concrete had been poured into all my limbs. Only then did I realise exactly what I’d done to myself. My spine felt traumatised; an iron spike into my skull. By this point my arms and hands were throbbing as if I’d been weightlifting all day yesterday, rather than transferring underwear into drawers and onions into the veggie basket.

‘Fatigue’ doesn’t really cut it.

* * *

In the early morning, I heard a podcast interview with Laura Bates, founder of the Everyday Sexism project, who has written a new book, Fix the System, Not the Women. She related how, in 2021, after the murder of Sarah Everard, police told women in the area not to go out alone after dark, and after the murder of Sabrina Ness, attack alarms were given out to women. Reflecting on this, Bates got a round of applause when she asked: “At what point are we going to stop talking about the women and what they should do differently, and look at the problem?”

When the challenge is framed as “violence against women” as opposed to “male violence”, it places responsibility for addressing it on the victim and not the offender.

I want to learn a lesson from Laura Bates’ observations and encourage us to leapfrog into a more empowered way to deal with our problem. In our case, we need to turn the spotlight away from the Sick and onto healthcare practitioners, medical insurers and government departments.

With all due respect to our hard-working ME organisations, what we need right now is not another showcase of paintings and poems about our suffering, but direct action to address the systemic bias that is denying us our right to healthcare. If we want structural change more than ‘thoughts and prayers’, we need a politically savvy campaign – not an art salon.

This starts with a definition of what is oppressing us. Staminism: an ignorant attitude that dismisses or belittles the painful energy-limited experience of the chronically ill. That fails to account for the impact of energy impairment on every single aspect of our lives. That condemns us as weak, when we are in fact Sick.

Shining a light on staminism throws into harsh relief the cruelty of clinicians who, contrary to updated guidelines from medical authorities on both sides of the Atlantic, continue to impose GET and CBT on vulnerable newly diagnosed post-viral patients.

With the pandemic unleashing a tsunami of Long Covid across the world right now, veteran Longhaulers owe it to the next generation of the Sick to set the tone as well as set the agenda. Respect isn’t a bonus extra during a public health crisis, but a fundamental. We should not be begging for attention but demanding our rights and our dignity. It is time to call out the staminist behaviour we will no longer accept:

It is staminist to imply the chronically Sick are ‘fakers’, malingering or undeserving – this is hate speech that vilifies us and enables abuse.
It is staminist to bully the Sick to push themselves beyond their energy limits.
It is staminist to prize productivity above the value of proactive rest.
It is staminist to expect the severely Sick to drag themselves to doctors’ rooms and pay for a 20 minute consultation with having to endure a week of PEM.
It is staminist to gaslight us about our symptoms or minimise our struggle and pain.
It is staminist to put us in hospital wards with bright lights, loud noises and overwhelming smells.
It is staminist to continue to insist, in the face of copious scientific evidence, that our illness is psychological.
It is staminist to continue to deny that our disease deserves biomedical research funds commensurate with patient numbers and the level of suffering.
It is staminist to threaten the severely Sick with forced removal to psych wards.
It is staminist to remove severely energy-impaired children from their homes with bogus diagnoses of MUS or Pervasive Refusal Syndrome and accuse their parents of Munchausen syndrome by proxy or FII.
It is staminist to deny the chronically Sick medical treatment and insurance payments.
It is staminist to make application for disability grants so arduous as to be inaccessible to those with energy impairment and compromised cognitive capacity.
It is staminist to dismiss and invisibilise our illnesses and refuse to count ME and Long Covid as disabling chronic conditions.

Perhaps it’s time for an Everyday Staminism site to record and make visible the scale of what the Well inflict on the Sick on daily basis, from micro aggressions to major abuse.

* * *

By Thursday, I was able to function more normally again. I was pleased I’d paced so well – four hours on my feet cost me only four days’ payback to get back to baseline, rather than a whole week. Of course, a cosy bedroom and the unseasonably warm climate-changey weather helped. (Sampson was able to go swimming without a wetsuit that Tuesday and was surrounded by a frolicking pod of dolphins!)

I felt I’d got off lightly.

I have debated long and hard with myself about including this last section.

I woke up with the word “Staminazi” in my head. Whoa, I thought, that brings a whole new spin to Arbeit macht frei. But I didn’t want to be responsible for putting that word out in the world – even if those who continue to insist on pushing the false narrative of Freedom through Exercise deserve to be seen as dangerous fanatics forcing those with Long Covid to risk becoming as permanently disabled as those of us with severe ME.

But then I read an incisive blog by Professor Brian Hughes about a new book by Fiona Fox, head of the Science Media Centre, a propaganda arm of the Very Important Psychologists from the Royal Colleges. In it, Fox devotes a chapter to “The bitter row over ME/CFS research” which she prefaces with – take a deep breath of chutzpah here – an inscription from the Holocaust Museum, part of the poem by Pastor Martin Niemöller which begins “First they came for the Communists…”

Prof Hughes concludes:
The implication is that ME/CFS patients (and their advocates) who deign to object to medically obsolete treatments are, in fact, sinister malefactors aiming to overthrow the healthcare system by incrementally purging it of innocent doctors who just want to administer CBT. You know, just like the Nazis.

(Pause to facepalm…)

Prof Hughes states that “The hyper-privileged always seek to deflect criticism by casting aspersions on their adversaries” and draws a parallel between the “two deeply hierarchical professions” academia and medicine, and other conservative groups “where dominant seniority frequently stands in the way of progress”:

In defending their naked protectionism, these medical conservatives have adopted all the usual scare tactics deployed by right-wing hysterics. They have complained that they are “being silenced,” shamelessly adopting the standpoint of the oppressed and marginalised. They have accused those who criticise their bad science of being “activists,” as though they are being targeted by an organised conspiracy.

(N.B. Adam Lowe also reviewed Fox’s book, with a plethora of calm facts and stats from his time serving as an ME patient rep on the NICE treatment guidelines committee, with an emphasis on the oversight and integrity of the process.)

And most recently, they have leaned fully into right-wing paranoia. They have completed the Bingo card of the conservative persecution complex. Utterly succumbing to Godwin’s law, they have decided to imply that their adversaries are actual Nazis.

Godwin’s law states that, as an online discussion grows longer, the probability of a Nazi analogy increases to certainty, but also traditionally holds that whoever first brings an hyperbolic comparison to Hitlerism into the debate automatically loses. Barrister Valerie Eliot Smith for one thinks the ME community may have basis for a defamation suit.

Personally, I don’t think such a comparison is appropriate under any circumstance (although I hold up my hands to deserving the occasional tongue-in-cheek application of the phrase grammar nazi). But if the BPS lobby is bandying analogies about, let us weigh the evidence:

To whom is a Nazi label more appropriately applied?

Is it to the millions of ME ‘activists’ unable to stand up, let alone march and protest, who are trapped in solitary confinement in our beds because stigma and systemic neglect since 1970 has led to a disgraceful absence of research to free us from our suffering?

Or:

To the members of the Royal Colleges who initially refused to accept the democratic conclusions of the joint committee conducting the 3 year review of NICE ME/CFS treatment guidelines? Who continue to utilise such unscientific propaganda to maintain their monopoly over the field?

To the psychologist who, in the early 2000s, signed off the brutal and fatal sectioning of Sophia Mirza? To the Very Important Psychiatrist who, in the 1980s, approved leaving 12 year old Ean Proctor to sink in a swimming pool when his mother described him as “in a wheelchair, he couldn’t speak, his hands were in tight fists. He was all skin and bones—he looked like something out of Belsen. How could he do anything?”

To the Lewisham Hospital doctors who, in 2019, insisted that 17 year old Jehan ‘Gigi’ Joseph-Garrison was not physically but psychologically unwell and forced her to engage in harmful exercise therapy despite her being so frail as to be “close to death”? A process her mother Dionne – an experienced clinical psychologist herself – has described as “almost torture”.

Is Staminazi too harsh a word for those who have deliberately stymied biomedical research funding for post-viral illness and left the Very Severe imprisoned in the dark for decades?

British teenager Gigi Joseph on holiday in Norway before she became ill

Gigi in hospital in 2019 (photo included with her permission)

American photographer Whitney Dafoe, aged 21, before falling ill in 2004

Whitney has been bedridden since 2012. This photo is from his blog Alone Together April 2022

May this winter solstice be the lowest point for the Longhauler community.

May our rising light reveal the scourge of staminism.

Still Here!

Some friends and family have been wondering where I’m at, so here’s an update. 2022 hasn’t panned out at all as expected but, considering everything, I’m in a good place, mentally, as well as being sheltered in the peaceful and leafy surrounds of the Imhoff Caravan Park in Kommetjie.

Yeah, I always look well

As winter encroaches, I am waking sometime between 8.30 and 9.30am depending on how capable my body was combatting adrenaline spikes in the small hours. It takes one hour for the sensory overwhelm to subside enough for me to get out of bed (noise and light are debilitating at this stage, I often wear ear defenders), and another hour to wash, dress and make my bed. My husband makes me a fruit smoothie for breakfast; I consider myself very fortunate that I am not at present suffering the difficulty swallowing I had in winter 2020. Half an hour’s T’ai Chi eases pain in my muscles and joints, restores my balance to some degree and stokes my organs.

So it’s taking the whole morning to get up and get ready. Lunch is also usually prepared by my husband because I’ve used up my standing time on T’ai Chi. I have to lie down and rest to bring my heart rate back down while he’s making food, then rest again after eating in order to digest it. I only shower once every three days, because that takes my energy reserves for the entire day.

If I’m lucky I may get one hour after lunch when I’m capable of working while lying on my bed. Writing has unfortunately taken a back seat to a host of other things: an admin email or a phone conversation with a family member might use up all my spoons for that day, and both have been very necessary recently.

In the late afternoon, whenever I can, I have been taking a gentle walk around the campsite. This 10 minute circuit brings the day’s total steps to around 4000, a huge improvement on May 2020 when (unable to fly to Spain as planned due to the onset of the pandemic) my upper limit was 1500 steps. Even last year, I had to stop and lie down every 100m to put my legs above my head so I could breathe. Now I can go 1km! It’s a significant increase in strength and resilience.

I am so eager to do more but am constrained by getting klapped by PEM if I go above my limit. A week last Saturday, Zola came to visit, and I lay on a campbed outside the truck chatting for 90 mins. Exactly 24 hours later, on my usual sedate circle of the park, I suddenly felt very unwell. My Fitbit showed my heart rate spiking to 162 (from resting 68) when it usually only reaches 100-120 if I’m pacing carefully. When exercise is poison to your body, how do you keep fit?

Postscript: The day after pushing myself a bit too hard to publish this blog before month end, my heart rate went up to 177 on my afternoon walk.

Maybe once a week, on a day when I don’t shower, I cook the evening meal in the early afternoon, just to give Sampson a break. But it’s mostly a token gesture: he’s doing all the shopping, all the washing up, all the hand-washing. Plus chopping a butternut left my right arm completely useless for 2 days!

* * *

It’s a year since I went down with Covid in Cabo Verde in May 2021, 14 days after leaving the safety of 14 months’ shielding with my husband. Sampson has been so careful about not exposing me to infection, he is the only one of my extended family not yet to have contracted Covid. I am so grateful for his sacrifices. Sometimes I feel wretched that he is trapped with me in my Groundhog Day existence.

In June 2021, after a fortnight of “aeroplane legs” where it felt like blood was coagulating in my lower limbs, one evening I experienced an attack of vertigo so extreme, I struggled not to lose consciousness for 10-15 minutes despite Ruby holding my feet above my head. Since then my cognitive capacity has dropped considerably. In July in Spain I became aware that I could not hold two thoughts in my head simultaneously. In August, battling to complete my annual Severe ME Day blog while waiting to receive my first vaccine, the fog was so bad I felt like my brain was drowning. In September, I experienced some relief wearing the rigid collar to lift my vertebrae and help drain my jugular vein, as recommended by the specialist I saw in Barcelona. But still my train of thought kept falling through the missing slats in my mind.

In late October, a month after I returned to SA, I made it to an appointment with a physio who hadn’t read my links about Ehlers-Danlos Syndrome, the connective tissue disorder the Spanish surgeon told me I had, or the Muldowney Protocol he recommended they implement. After a few repetitions, I expressed my doubts that neck ‘figures of eight’ and arm ‘snow angel’ exercises were suitable for me and stopped. A few painful days later, while going up the ladder into the truck, a gust of wind bumped the door against my right shoulder. The ricochet bounced my left shoulder out, badly damaging my rotator cuff.

My body can’t tolerate painkillers, so for 4 months it was difficult to sleep and to get myself dressed. I had to support my arm in a sling while walking. It’s been healing better since March, and now I can almost do T’ai Chi properly, although I still can’t lift my arm high enough to apply deodorant or put my hand on my hip. I’m so fortunate it wasn’t my right one.

It took 6 months to find a GP willing to help me. I thought coming back from Barcelona with brain scans demonstrating evidence of Cranio Cervical Instability would make dealing with doctors easier, but in fact it made it worse! The first two I contacted via email were unwilling even to see me and insisted I should go to a specialist. I agreed, but as there are no ME or EDS specialists in South Africa, am I just supposed to endure constant pain, insomnia and orthostatic intolerance, without any medication or support?

Third time lucky, I found a young female doctor who apologised for her colleagues’ lack of compassion and even volunteered to come and see me at home! She confirmed that the shoulder subluxation last November had in fact torn 70% of the ligaments in my left arm. I know she can’t fix me but I’m hoping we will be partners in the journey to identify medications I can tolerate to ease some of my symptoms.

In the New Year I determined to concentrate on writing this book and dispense with everything else, even Patreon. But on Jan 2^nd my Mom had a stroke. Though I was unable to travel back into European winter and offer any physical help, I prioritised providing emotional support for my brother who was doing the heavy lifting of caring for Mom alongside Dad for 4 months after she got out of hospital.

Sampson and I had planned to head north in March, take the truck to the KZN coast where it’s warmer, but a steering part we were waiting for hadn’t arrived. It was frustrating at the time, but now we’re glad we stayed – although hostel is a safe environment, Zola began to take strain in term 2 of Grade 12 and we realised he needed our close support to make it through Matric. Sampson has been ferrying him to French classes and delivering his own weight in noodles weekly.

I’ve gone out a handful of times this year. In Feb I joined a birthday picnic on Noordhoek common, in March I lay in a friend’s garden for a 90 min visit and in April I finally made it to the dentist – woohooooo! In May I went to Kalk Bay for the first time since completing the Africa Clockwise trip in 2019 and reclined on a padded bench in an outdoor café on a Sunday afternoon watching the world go by. It felt like a mirage.

Each time I paid heavily for travelling in the car; even lying down in the back with the supportive collar on leaves me with mild concussion symptoms that can take up to a week to recover from. So I feel lucky to be staying in this campsite, which as well as being a green oasis of calm and birdsong, is full of friendly neighbours who make me feel less isolated. About once a month, I’ve managed to walk to the beach about 500m away. Sitting on the rocks looking across to Hout Bay and Chapman’s Peak with a sliver of Table Mountain in the background makes me feel mightily blessed.

* * *

For international ME Awareness Day May 12^th 2022, I wrote a piece for the Daily Maverick about the risk of Long Covid on behalf of the ME/CFS Foundation of South Africa. I started drafting it in March, did the main interview with Mlindeni Gabela online in April, but only managed to complete it thanks to being alerted to Facebook testimonials by other friends. Mostly I was unable to focus long enough to compose my thoughts and capture them in words.

We are ignoring long Covid at our peril, say those living with it

Currently I feel like I’ve managed to crawl up out of a deep dark well, and am hanging on to the side by my fingernails with my head just over the top shouting out to passers-by, who seem to be wandering about carelessly, oblivious to fact that at least 1 in 10 are at risk of falling into this post-viral hole of permanent disability.

My life might look basic to you, but I am fully aware of how rich and varied it is compared to those treading water at the bottom of the well. From early April, post-booster, after a day with a hammering heart rate when my body thought I was dying, my immune system seemed to bounce out of the metabolic trap. I started sleeping through the 3am-5am wired window and feeling less nauseous, able to enjoy food a little more, walk a little further. (Please note this is not an example of Graded Exercise Therapy – it’s taken more than 2 years for my body to get stable enough to begin slowly increasing my daily steps. Any earlier would have been detrimental.)

In early May, the week after my brother returned to Portugal, my folks finally went down with Covid. My Dad of course has barely flagged, but my Mom – who had worked her way back to walking through three physio sessions a week for three months – is still flat out. I’m trying not to worry about her post-stroke vulnerability and micro-clotting until strictly necessary.

Though the mills of medical authority grind exceedingly slowly, following the delayed publication of the updated NICE guidelines last October which banned GET for patients with ME, this month an acknowledgement that ME deserves a level of research on a par with other severely disabling conditions was finally forthcoming from the UK government. On 25th May, at the launch of a report by the All Party Parliamentary Group on Myalgic Encephalomyelitis, the British Health Secretary Sajid Javid pledged more support for ME – in part because a young relative of his is suffering with it.

A significant reason I am doing better now than in 2020 is not so much physical as emotional. This winter I may only be 70% bed-bound rather than 90%, but I am at least 50% more comforted by the care and support of my husband. His attitude towards my illness has totally transformed; he is no longer living in denial or resentment and I am so thankful. This decision to make the most of it and cherish each other makes all the difference in the lives of the chronically ill. We are at the mercy of our carers and their mood affects our entire existence. Sampson’s love, tenderness and humour lift me up and carry me through.

Next weekend, when the truck finally goes into the garage, we are moving into a cottage so Zola will have a cosy bedroom for his winter holiday. We’re looking forward to our son turning 18 and our daughter 21 in the next two months, and a family reunion at the end of the year when Ruby comes home from the UK for Xmas (variants allowing).

The delight of my life right now is the family ‘Wordle Smugness’ Whatsapp group where three generations compete for glory on a daily basis. The kids are realising that their Nana wasn’t a demon at Scrabble for nothing. We crips may be down, but we ain’t out yet!

Karibu

The settlement of Malindi was developed by the Swahili civilization during the 5th–10th centuries – the word Swahili meant ‘coasts’. KiSwahili has served as East Africa’s lingua franca since 9th century. Bantu-speaking farmers moved into the area, smelted iron, and built timber and wattle houses thatched with palm leaves. By the 11th century, the Swahili along the coast were acting as middlemen for Somali, Egyptian, Nubian, Arab, Persian, and Indian traders. They began building coral houses and walled towns, and their elites converted to Islam, often speaking Arabic.

Once rivalled only by Mombasa for dominance in this part of East Africa, Malindi has traditionally been a port city. In 1414, the town was visited by the fleet of the Chinese explorer Zheng He. Malindi’s ruler sent back a personal envoy with a giraffe as a present to the Chinese Emperor.

When the Portuguese explorer Vasco da Gama met Malindi authorities in 1498 to sign a trade agreement, he erected a coral pillar. At that time, Malindi was a prosperous town with a majority Muslim population of between 5,000 and 10,000 exporting ivory and rhino horns as well as agricultural products such as coconuts, oranges, millet and rice. This trading post served as a rest stop on the way to and from India, and the Portuguese were eagerly welcomed by the wazee who sought to use the Europeans’ military might to establish themselves above their rivals in Mombasa.

* * *

It was in Malindi at the beginning of July 2018 that I stopped being able to accompany my family out on visits. During their 4 days of surf, the boys met German artist Rainer Leimeroth (pictured above with his daughter Nora) who invited us home to meet his family, but I was too ill so the others went without me. He bought Sampson’s Africa Clockwise board as well as Ruby’s SUP to teach his kids to surf.

Sampson did an Africa Clockwise show for the staff of Ocean Beach Resort, who gave us 80L of WVO and treated us to a restaurant meal. Although Chef Isaac made me a delicious Sam-friendly gluten-free fish dish, I was struggling to sit up for the length of time it took to eat it.

But I was grateful for hard solid sand to walk on arm-in-arm with my daughter while she filled me in on all the details about school. And though mostly confined to horizontal, I was happy writing, enjoying the whittling and smoothing process of editing the first blog on Egypt.

Two months before, dear old friends of ours had sent an email to Sampson recommending I try an “amygdala retraining therapy” for my ailments. One of the couple had experienced relief from fibromyalgia pain and fatigue symptoms through repetition of phrases “to stop negative thought processes” and they offered to buy me the 6 CD series. I know their intervention was nothing but kindly meant, but it still hurt. It took me several weeks to craft a reply that calmly and comprehensively summarised my feelings with the frustration excised. It felt like a real achievement when I finally pressed send:

Regarding this illness: there is a growing consensus that the situation of ME/CFS right now is a bit like HIV/AIDS in 1985, before the advent of decent funding and comprehensive research. Ignorance and stigma from the medical profession is causing a lot of unnecessary suffering and confusion. I am certain that 20 years from now, it will be clear that ‘Chronic Fatigue Syndrome’ was an umbrella term applied willy-nilly to a whole host of conditions in a bleak period when doctors tended to dismiss majority-female-affecting maladies.

ME, Lyme’s disease, EDS, POTS, fibro and other ’spoonie’ conditions share symptoms with many psychological disorders and the overlap has allowed therapies such as CBT and GET to be approved as official NHS treatments when the latter especially has been proved fatally detrimental to people with ME. People who are sick with post-viral syndrome for a couple of years and then recover, I think have a different (stage of the) condition – I classify this as a CFS but not full blown ME.

I know I have ME – by which I mean a neurological, auto-immune systemic disease first identified by Dr Melvin Ramsay in 1957. You can’t talk yourself out of it anymore than you can talk yourself out of malaria.

On the journey back to Hemingways, my husband came past me on the bed, looked at me tenderly and asked “You OK my little bird?” before giving me an affectionate peck on the cheek. His unexpected compassion brought me to tears, and an awareness that I can handle anything if surrounded with such cushions of care. Ruby’s being here made us both be better to each other. (It had been 3 months since we last made love, a chasm previously unheard of in our marriage, sadly more symbolic of our recent estrangement than my weakness this year.)

The teens played like kids for hours in the pool, wrestling games, or Marco Polo with Ruby cheating shamelessly! In my diary I wrote “They are the opposite  of Gremlins – just add water and they transform from snarling beasties of early morning grumpitude into frisky puppies tumbling over each other.”

They played tennis in the rain in their swimming cossies, and I pushed myself to knock a ball over the net with Zola for 15 mins. My demonstration of a classic cross court backhand was probably the last time I impressed him doing anything physical, and well worth the PEM pain in my elbows. Thanks for all those hours coaching us in the back garden, Dad!

(And greetings to Hemingways electricians: Harrison Kithi, Sulieman Karabu, Christopher Baya and Khonde Karisa)

Sampson was delighted to meet the Big Green Truck’s little green brother when local community based organisation Dabaso Tujengane‘s Lynne Elson arrived in a customised motorcycle container driven by Rahusa for their Wajimida Jigger Campaign. Jiggers are tiny sand fleas that burrow into hapless children’s feet and cause an horrific infection known as tungiasis – if you’re brave, look at the gruesome images on the website of funder NGO Maliza Funza. The Swahili words on their mobile clinic exhort readers to “Keep clean, wear shoes” and the donated black canvas Toms and neem&coconut oil soap have saved many thousands of kids from infection. Sampson was so impressed by this initiative, he christened Rahusa and Lynne the Jiggernauts!

Once again, I was unable to stand up long enough to chat. I was definitely starting to lose touch with the outside world, because I was just too exhausted to communicate. I wished I had a shorthand way of explaining why talking was impossible for me at that moment. You only have to say the one word “cancer” for people to have an inkling of what you’re going through, sympathetically back off and cut you some slack. Isn’t is ridiculous that just standing upright trying to explain “energy-limiting chronic illness plus orthostatic intolerance” was liable to burn through my reserves for the rest of the day!

On Friday 6th July I had what felt like the first proper functional night’s rest this year. I wrote in my diary “This thing you call sleep is amazing”- it made an extraordinary difference. My brain immediately started making plans. I managed a swim after T’ai Chi despite winter water temperature, trimmed my hair, did a rates recon and cooked supper.

The highlight of the day was bumping into Athman “Atchu” Oman and his glorious ride, the flyest tuktuk ever, named after his Baby Naa aged 3 years. Check the speakers!

On Saturday, my Dad got me up to date with World Cup gossip before we all went to the sports bar next door with Hemingways manager Melinda and her husband Richard for a jolly evening watching England beat Sweden 2-0.

Grade 11s were obliged to do some work experience this holiday, so Ruby was very lucky to be accommodated at Hemingways by shadowing duty manager Mr George Tsuma and then spending some very special days with dynamic local Watamu vet Dr Feisal Faraj attending to dogs, kittens and even a turtle!

Sampson and Zola left on a boat trip to surf a reef in the Mombasa channel, so for a whole day I experienced the unusual peace of being completely alone in the truck. Apart from PJ of course, who seemed to be constantly hungry and sleeping. Such a comfort it wasn’t just me!

In the night I dreamed I was fainting. It was so vivid and scary. I was falling and unable to speak, willing my “help me, help me” eyes to be understood by whomever was watching me topple over. (Three years later, with the advantage of a pulse oximeter, I now know that feeling is a sign my oxygen saturation levels are dipping dangerously below 90%)

The next day, Ruby and I shared laughs in the pool in the morning as she pulled me around; unfortunately this knocked me out so much, I couldn’t go with her in the tuktuk to do the shopping in the afternoon, so she made the culinary choices. Look what a bargain she cooked up for us and PJ!

Things I was supremely grateful for: my daughter and her willingness to try anything; Zola’s amazing tomato tumeric sauce; green coconut water helping me feel less dizzy in the mid-afternoon; the impeccable laundry service at Hemingways that saved me from the increasingly impossible effort of handwashing (when those bags came back with all those clothes fresh and folded, I could’ve cried, it was such a gift).

On the final day at Hemingways, we all went for a dip together. On the loungers, a middle-aged man leaned over and kissed his wife passionately and tenderly like she was the only thing in the world and exquisite; I felt broken. Sampson was oblivious.

That afternoon, I couldn’t work out why my nape-ache and brain inflammation was as bad as if we’d been driving for hours. I wasn’t up to handling the late kick-off so the kids went out without us to watch Croatia knock out England in the semi-final, escorted by our heroine Jiggernaut Lynne.

Tuskys Supermarket Watamu

On our way out of town, we stocked up once again at the supermarket, where this was the greeting outside. The KiSwahili word “Karibu” means “You’re welcome”.

I wished I was well enough to have taken photos of Watamu’s endearing painted signs, but I had to lie down most of journey back to Kilifi for the last couple of days of Ruby’s holiday. What a joy it was to be back at Zola’s almost deserted birthday beach. Kilifi reminded me of the President’s Right. It was a bit of a jolt to realise how much weedier I was since those days in Ghana in 2014.

Welcome back to paradise

We had come back to shoot a video to thank Victron for the solar equipment they had donated. For the last few days at Hemingways, I had been editing Sampson’s script down from 6 to 3 pages. It was only 3 minutes long, but filming it took hours. We only had one day to do it because the boys had surfed extra days this week in Watamu, so Sampson was stressed.

The process made me vow Never To Work With My Husband Again. While the kids did brilliantly – Ruby pitch perfect in every take and Zola impressive even though he hates this kind of thing – Sampson was faffing around to a dangerous degree. Even though I’d begged him beforehand “If you want me to be in this video, please don’t argue about everything every step of the way – I haven’t got energy to waste” – guess what? With him directing, it took forever; he even exhausted Ruby.

Finally at 5.30pm I was able to lay down while he cooked celebratory chicken for supper and Zola went diving in the breakers. But when I got up an hour later to come to the table to eat WALLOP!! I was struck with the horrifying realisation of what I’d done to myself. I couldn’t believe the level of pain just from pushing through the last couple of hours. My body felt like I’d been beaten top to toe by a plank, no, a BEAM of wood.

Was the result worth it?
Karibu!

That night we watched the brilliant stand-up comedy show ‘Nanette’ by Hannah Gadsby and I was reminded why I love him when Sampson wept and grasped my hand. But he also blinded me by putting the searingly bright light on over my bed three times afterwards, despite the dozens of times I’ve told him how much that hurts when I’m tired.

At dawn, after my overwrought body was woken by yet another hot flush, I lay listening to Sofie Hagen‘s Made of Human podcast, pondering guest Chidera Eggerue the Slumflower‘s admonishment about “colluding in our own oppression”. Wasn’t I angry with him for doing to me what I am most guilty of: ignoring my symptoms and putting others’ creative needs first? I’d spent a lifetime prioritising others’ development. It was time to stop making excuses.

I was and still am sorrowful that my stubborn teenagers wouldn’t let me take a photo of all four of us together in this idyllic place. But I’m very grateful that my sneaky daughter took these photos of her parents next to PJ stalking the birds – I don’t think I’ve got another pic of the two of us together on the whole trip!

That afternoon we drove back to Mombasa airport with me flat out in the back. I managed not to cry too much before Ruby left at 3.30am to catch her plane back to South Africa and restricted myself to 5 minutes’ sobbing afterwards because I was too exhausted to handle more. Each time I woke overnight I was hit by the misery of remembering: she’s gone, she’s gone.

Bombshell

I started writing this blog the week before Christmas 2021. A month later, I abandoned it. I’d hit a brick wall. It wasn’t only because my Mom had a stroke just after New Year. Everything seemed to have skidded to a halt. I was stuck.

Last week I finally spoke to my daughter.

“Ruby, I’ve not been able to write. It’s not just been because of the constant worry about Nana, of being too far away and potentially just another burden if I went over there in mid-winter. But because I’ve reached the point in the journey where you flew to Mombasa to visit us for the winter holiday. The story ceases to become mine to tell. You need to let me know whether you’re comfortable with me broadcasting it. Or whether I must save it for the book. Or not bother at all.”

She was quiet for a long moment; “I don’t know what I think about that”.

“That’s OK” I said, “You don’t have to decide right now. I’d obviously send it to you for approval first. There’s no rush…”

“No” she interrupted briskly, decisively, “I do want it in there. It’s important to point out the irony, how everyone was scared something bad would happen to us in Africa, but in the end it was Europe that proved unsafe. It’s part of the trip. It’s what made me who I am, it’s what made us who we are. I’m not ashamed of it.”

A great weight lifted off my shoulders. It’s what I hoped she might feel eventually, what I hoped I would feel if it had happened to me, but I couldn’t presume to speak for her. I gulped my gratitude.

It’s taken her five years to get to this point. I couldn’t be prouder.

* * *

On the road north to Watamu, I only managed one hour sitting upright in the cab before having to lie down in the back. I was shocked at the fall out just from that, alongside the increasingly painful PEM pain in my arm from resizing photos the day before. The fact that things had begun to feel beyond my control brought me to tears at the supper table that night. I also had ringworm on my hand – another sign my immune system hadn’t yet recovered from typhoid in Sudan. I felt Rattled, and not just from the brain shake of being back on the road.

At the time I wrote:
“If the lesson of 2017 was ‘If you hide the true state of your weakness from your elderly parents to avoid worrying them, you can’t be upset when they show ignorance of and insensitivity to your condition’, then the lesson of 2018 so far has been ‘You can’t be angry with your husband for not taking the fragile state of your health seriously if you’ve been modelling such behaviour for years’. I have been bitter that he’s not looking after me, watching out for me, pulling me up when I’m about to fall down – but have I been as loving and care-full of myself? I have to be honest and kind with myself if I want those around me to act accordingly. If I’m angry with him for pretending this is not happening – what does that say about me?”

The first place we approached for WVO was the luxury boutique hotel Hemingways. The Watamu site had recently been redeveloped and was so brand new, they were still finishing the thatching: with renewable recycled plastic fronds from Malaysia that last for 25 years! Five star with four pools, it was the premier property in colourful Cornishman Dicky Evans’ hospitality chain (and named Kenya’s Leading Beach Resort at the 2021 World Travel Awards). Dicky, a former Kenyan rugby captain, apparently also owns the Cornish Pirates rugby team in Penzance UK, whose strapline ‘Putting the Aaargh in Rugby’ is a classic groan worthy of Sampson himself!

Hemingways’ manager Melinda Rees was so welcoming to Sampson and the kids, I felt terrible to be simply way too ill to get off the bed to go and meet her. I had to take Ibuprofen to try and reduce my brain inflammation to sleep.

The next day, I was glad Ruby coaxed Zola out of bed to swim, before being whisked off by Melinda’s friend Jane to see the EcoWorld recycling centre, a project of the dynamic Watamu Marine Association, where tons of plastic collected along coastal beaches is building a circular economy in Watamu, being transformed ‘from trash to cash’. When they got back, Sampson did his climate awareness show for 30 Hemingways staff to thank them for their WVO donation. Ruby had to take the pics:

Afterwards I dragged myself up to go on a short windy walk round the whole complex with the kids. I was so dizzy I couldn’t stand or sit up for long, but felt blessed to hang out on the hamster wheel seat with them, more aware than ever how precious our time together now was.

Memories of this time are dominated by a soundtrack of Ruby singing along to 17 by Alessia Cara. This is also when Zola started listening obsessively to The Vampire Masquerade by Peter Gundry, following his research on waltzes as part of a school project.

On third morning there, while the boys were in the gym, I was doing T’ai Chi by the pool and Ruby was enjoying swimming in the rain showers. She kept asking me if I was OK “because you look so pale”. It was true I was really struggling, not to breathe, but somehow to oxygenate. I was also confused as to why my body wasn’t responding like it usually did to Good Solid Warm. The humidity was not that sapping. Why wasn’t I bouncing back?

I wrote in my diary “If I’m about to have a period, or officially hit menopause (it’s been 11 weeks now) or about to go down with malaria, then this drastic lack of energy could be explained. Otherwise, I have to admit to the possibility that this might be it. My new level: pretty disabled. Basically bedridden but for one hour in the morning and one in the late afternoon?”

The sobering realisation that I wouldn’t be surprised at my heart conking out at any time now made me resolve to finish letters I’d started drafting to family in the event of my death. I wasn’t scared, just facing facts. I was very glad my husband was in a strong enough mental state to share thoughts with; it was so much better not to feel alone with it all. I was less distressed at the shrinking of my physical capacity as mental. I could feel my fogginess getting denser – I was increasingly getting lost in it, which was so frustrating when there was so much to do and so little time.

This disease was messing with me like PJ with this crab.

It was only another 20km on to Malindi, but a very bumpy road. Big Reg parked on an empty sandy lane outside the five star Ocean Beach Resort. It was stiflingly hot and I was so grateful for the sea breeze at the end of it, even if I couldn’t get there yet. I’d taken Ibuprofen again to preempt brain shake and it zonked me right out.

Sampson was beside himself at the prospect of some decent surf, as excited as a kid at Christmas. The boys got two sessions in, and the swell was so big, Zola snapped his board. For the next couple of days their pattern was: gobble down breakfast, surf, back for brunch, surf, back for supper, collapse.

I decided to focus on Ruby as she’d been spending far too much time concentrating on me being ill the last few days. We spent several hours on the bed researching universities across SA and UK. Her preference was for a BSc at WITS in Jo’burg, at that time with fees at about R50000 p.a. She knew the reputation of UK universities was better, but at £9000 a year now, she decided they couldn’t be 3 times as good. She was saying she wanted to study Cell Biology so she could become an ME researcher. Bless her.

The next day I managed a short walk on the beach before it got too hot. My stomach was painful and weirdly bloated, distended far more drastically than from dodgy food. Eventually I realised it must be the result of taking Ibuprofen 3 days in a row. Finally, I got stuck into some editing; although I had failed to get two blogs up in June, I felt I was back on track now.

At the end of the afternoon, Ruby came to lie next to me on the bed and told me about a chat she had had recently with our friend, her fairy godmother Clare. Sheepishly she related that, after she’d told her about a memory that had come back to her, Clare had said “You really must tell your mom”.

“OK…”

Ruby said she didn’t know why she hadn’t told us at the time, and she had really wanted to tell me since but… “Just tell me” I said. “Well,” she breathed in, “remember that time in Spain 2 years ago, in the campsite?” “When you woke up to find the man in your tent?” “Yes… Actually he was on top of me.”

Blink.

(How the world can capsize in a second.)

She told me she’d woken up when one of the cats, Cleo, walked over her face. When she shouted, he put his hand over her mouth and throat so she kneed him in the groin and he’d legged it. She said she’d screamed for help and we hadn’t heard because there a strong wind off the sea taking her voice in the opposite direction. (We’d moved the truck two parking places over to get more sun on the solar panels and although Zola had shifted his tent too, she’d refused to move. We’d all thought she was safe here.)

She didn’t recognise him, but knew he was Spanish.

Only when she ran out after him – facepalm – did she realise he was naked below the waist, carrying his jeans.

* * *

The shock

* * *

The horror

* * *

The humbling

* * *

For every time I had ever thought “How could a mother not realise when her daughter had been sexually assaulted?”

I never would have guessed that a daughter of mine would not tell me something like this. I had always made an effort to be open and approachable, so that no child would feel that they couldn’t be comfortably honest with me. What I hadn’t reckoned on was her not being able to be honest with herself. She said she thinks she blocked it out immediately, blanked it so completely, that the memory had only started coming back to her in flashbacks during the panic attacks of the last few months.

What could I say. There were no words possible to encompass the scope of the sorry I felt. I just held her, while the world rocked.

* * *

The incandescent anger

* * *

‘holding her down by the throat’

* * *

My darling girl

* * *

She’d just turned 15

* * *

At the beginning of Feb 2022, 20 year old mid-pandemic UNISA BSc student Ruby called us for an hour. In the last week of 2021, three months after arriving at her uncle’s in the UK, she had finally got a job, and, in quick succession, found a room in a shared house and some lovely new friends. She was so happy, relating how someone had told her how loving and open and fun she was, concluding “I feel back to myself again”. Her Dad and me looked at each other across the phone with tears in our eyes. We’d felt it already, but it was wonderful to hear her claim it.

Ruby Feb 2022 – she thinks the bags under her eyes look awful, but I think they are honourable badges of service after 2 weeks on nights caring for a client with advanced Alzheimer’s. Thank you Clare for all your precious gifts to my girl xxx

Still Life

Today I saw the cobra lying by the side of the path about ten metres ahead of me. Coiled up like a liquorice wheel, like a hosepipe, she was so still that for a while I thought she was dead.

I wondered if the people picnicking further along had killed her; they were drinking and there were empty quart bottles dropped carelessly in the bush heavy enough to do the job. But no, it was just that the cobra hadn’t clocked me yet. The wind was blowing so fiercely in my direction, she couldn’t smell me coming.

* * *

The first time I saw her, it was out of the corner of my eye. The end of her tail flicked up and caught the light as she disappeared into her hole. Lappies told me it was an honour. Even though Cape cobras are among the most common of South African snakes, sightings are still rare. A friend of his who has been hiking the mountains around Soetwater for 25 years has never seen one.

Even from that glimpse, I could tell she must be quite a substantial size. As cold-blooded creatures, snakes need to come out and lie in the sun to raise their body temperature enough to move about. In winter, they go into brumation or dauer state.

I empathise. My body can barely function when the temperature gauge slips below 15˚C.

* * *

We all slow down a bit as we get older. Very few people in their 50s have the va-va-voom to party all night every weekend like they used to in their 20s.

Maybe you count yourself as having half the energy you had then? But could you still pull an all-nighter for a deadline if you absolutely had to? Can you still push the boat out for a celebration every couple of months?

I estimate I now have about 1% of the energy I had before I got sick 30 years ago.

I’ve sunk to a lower level than that, but right now I can get up and get out once a day, walk 100m, breathe some fresh air.

Most of the time I lie here on the bed. I might be recovering from some great endeavour a few days ago – a trip to the clinic or the bank – or saving up energy for an online chat with a loved one. Mostly I’m recuperating from having a shower or making lunch. Those are good days. On bad days I can’t manage either of those things.

* * *

Since the flash of tail, I approach the low wall where the hole is cautiously. Cobras are mostly invisible, mostly stay underground. They’re not sociable, even with each other. If you see them out and about, they’re solar fuelled and ready to hunt.

* * *

I am so good at this now, so expert in meting out my scarce energy, that you wouldn’t have any idea how endangered my existence is. I look casual, my movements appear effortless, but it’s taken me a week of preparation and iron discipline to get to here: standing upright, washed, fed, body bolstered, compos mentis enough to interact with you.

Please make an effort to be jolly. It will take me a week of poisoned purgatory just to get back to baseline and I have to live on the memory of this for a month! Never mind the risk of killer viruses.

* * *

Wellness is a privilege you don’t realise you have until it’s gone.

* * *

Twice more I have seen her, stretched out, basking in the sun at the base of the wall. Motionless, soaking up the life-giving force. Vulnerable but still vital.

* * *

You cannot possibly appreciate the skill it takes to bring about ‘occasions’. How diligently I must pace my days, my weeks, my months. How I must ruthlessly hone my choices, weighing up the costs in pain and dysregulation versus benefits to sanity, hunting down moments of joy amidst the sapping waste of compulsory appointments.

* * *

Unlike the contemporary state of being Black or Queer, being permanently Sick isn’t associated with a defiant Pride. But I am proud of how I’m surviving my erasure. Not just the discounting of the chronic pain and the relentlessness of running on empty. But the forced re-imagining of who I am, the shedding of all the skins of me: the dancer, the walker, the talker, the reader, the promoter, the producer, the provider, the facilitator, the carnivalista, the feminista, the protester, the lover, the mother, the friend.

What is left?

* * *

photo by Bryan Maritz courtesy Tyrone Ping

When she finally noticed me, she raised her head to assess the threat. Ten metres back, I effortlessly became still. Slowly, she tasted the wind before sliding off into the dry grass.

* * *

Today I am happy. Because I was able to walk. Because the sun shone. Because the mountains allowed me complete calm. Because the glinting of a thousand wavelets on the cobalt and cyan sea gave me delight. Because I felt the leap of the massed terns wheeling in the blue.

Because despite it all, I am alive.

You have to choose to focus on what you have, not what you’ve lost. Some days it’s impossible, the grief is overwhelming. But today my gratitude is a balm. I am so lucky to have a loving family who believe me. Who support me by constantly shopping and cooking and washing up. Who allow me to lie down and save my scant supply of energy for things that make my life meaningful. Writing a few words a day. 

This page has taken me a week.

* * *

Someone watching from the outside would think I do practically nothing. That I achieve nothing. But I am an energy virtuoso.

You wouldn’t even be able to lift your head.

I have learned that the stiller I lie, the more life I have access to. It is horribly counter-intuitive and has taken me decades to fully grasp the artistry. Determined rest is the only way to charge my flat batteries and not overload my dysfunctional nervous system. Peace is critical; upset is poison.

The biggest threat to my body is misunderstanding it. My venom lives inside of me. Nothing outside frightens me anymore.

* * *

Drinking homemade rooibos cappuccinos with my husband in the afternoon. Watching my quiet son’s face break bashfully into a smile.

Choosing words.

A thousand birds, roosting on the summer rocks like snow, whirling up into the wind in a thick drift, a blizzard of terns.

* * *

Curled up here on my bed, life is still beautiful. It’s still life.

Bliss Beach

After leaving CAT, I was able to sleep on in the mornings until my chronic pain ebbed enough to be able to get out of bed more easily. In these winter temperatures, it was exponentially harder to push myself to get up at 7am instead of 9am, and doing it would make me feel disproportionately sick. When I asked Sampson, how, scientifically, this could be the case, he answered that I was like a 40 year old Mercedes 9/11 that takes a while to warm up and function properly – unlike a Ferrari body like Zola’s which immediately revs up ready to go!

On our way out of Nairobi, I was deeply sad to be just too ill to visit Mwalimu Gregg Tendwa, an inspiring multimedia artist, DJ and cultural facilitator I’d met in Cape Town in 2012. A vibrant and fascinating character, I had been looking forward to seeing him in his element at his home in Machakos (as I had Deji in Lagos and King in Bamenda). Once again, ME was depriving me of an opportunity to connect with people I care about.

As always, it felt better to be back on the road. As the altitude dropped from 1000m to 500m on our way down the busy highway towards the coast, Sampson gave me a wonderful blow-by-blow account of his UK visit with all the gossip from friends and family.

The baobabs were back, we saw meerkats and zebras by the side of the road, and it was getting warmer all the time.

Goodnight

That first night I felt such a sense of relief and freedom to be out of the city.

Good morning

The next day, we only had 100km to go to Mombasa but Sampson was still stressing out because Ruby was due to land in less than 24 hours.

A not unusual sight along the road to the coast

About 4pm, Big Reg arrived at Moi International airport, a surprisingly quiet spot surrounded by grassy lawns. Zola and I went for a little walk/unicycle respectively and there were dozens of tiny monkeys scampering about. Watching us from the base of huge tree nibbling on a yellow mango, one sat back on his haunches and displayed duck-egg-blue balls!

After all that driving on the hectic highway, Sampson crashed soon after Zola’s leftover curry and mash, but I decided to stay up rather than not be able to cope with being woken at 2am to leap out of bed. Amazingly Ruby got wifi on her RwandAir flight so we were chatting on WhatsApp. She was worried they’d left Cape Town half an hour late so she now had less than 30 mins to get through airport checks in Kigali and transfer to the Mombasa flight. It was nail-biting to imagine the progress of my still 16-year-old daughter from my bed. Especially as Moi International experienced power cuts twice during that time – when the whole airport went dark, I wondered would that affect the landing lights or signals from the tower?

Ruby finally arrived about 3.30am on 16^th June 2018, Youth Day. She walked out pushing a trolley balancing an enormous gaffer-taped big wave board her Dad had persuaded her to bring which she’d had to run across Kigali airport with, bless her. Not a single official had asked to see her Parental Consent Affidavit, and she told us that the lights had gone out on her plane as well…! It was awesome to be all together again.

We decided to head north not south because we heard the new bypass was not yet open. It was the less larney side of Mombasa but still thick with five star hotels, where we stopped to ask for waste vegetable oil. The Duty Manager at the first one unceremoniously threw us out of the carpark at 11pm, furious that her predecessor hadn’t observed permission protocols. Whether she thought we were the security threat or the ones at risk wasn’t made clear…

Big Reg drove 100m up the road and parked instead outside the far more welcoming Maasai Resort. This late night on top of the previous one, combined with the effort of calming Sampson’s flat panic, cost me a lot of spoons. In the morning, we had to thread our way through back streets between the fancy hotels along the narrowest of public paths to get to Bamburi beach. The kids were appalled to see another huge dump of plastic waste right next to this sign:

It was reminiscent of Ghana: best front forward for the international tourists, but beware the layers of poo just behind. There was a similar amount of badgering on the beach to buy boat-trips, camel rides and trinkets. But shoo it was wonderful to be back by the sea, with a stiff cleansing breeze. The air felt tropical again at last.

Sampson got cracking with local auto man Mr Edward Ronald who took several hours to extricate both alternators to replace voltage limiters and give them a service. After Zola’s Maths exam, the kids played in the Maasai Resort pool. I think this was the last time Ruby was able to physically dominate her brother – trying to stop him as he dragged himself around the rim with crossed legs. She’s so strong but has such a high-pitched giggle; his laugh was now so deep and guttural. How they have grown and yet stayed the same!

Back in the tropics

It was wonderful to listen to my teens reconnect over a sparkly makeover. I couldn’t get off the bed to sit with them but managed to sneak these pics out of the window. When they came in to show me, their stance reminded me of an old photo which I found in the mini-album in my cupboard. They’ve been playing the same game since they were toddlers!

I was so grateful Zola cooked his special dahl that night, ‘cos I was flat out.

The next morning, Sampson and I walked half the distance along the beach because I’d overdone it the day before. I got only 20% of the hassle I’d had when alone. I spent the rest of the day lying down, talking Ruby through how to link concepts in her history essay on Rwanda, loving her enthusiasm, before photographing and emailing all of Zola’s exam scripts to FHHS.

We moved on to ask for oil at the five star Serena Beach Resort and Spa, which was beautifully designed, with a bijou villa feel in contrast to the grand blocks all around. Duty Manager Herman asked us lots of questions as we sat drinking welcome lime cordials and green coconut juice. He told us Mandla Mandela was his mate, and when he was invited to Qunu to meet Madiba in 2012, he’d taken 12 Maasai with him!

Herman showed us Serena’s famous turtle hatchery and we were delighted to discover that their once weekly turtle talk for tourists was tonight!

At 7pm we attended a fascinating presentation by conservationist David Orlando, who told us all about the common Green turtle, the more rare Olive ridley and omnivorous Hawksbill sea turtle, the latter most endangered by the destruction of the coral reef. He was an entertaining speaker – describing soft Leatherbacks, in contrast with Loggerheads, as the “saloon car version”!

Each female lays up to 100 eggs in a nest at high tide. It takes 60 days for the young to hatch but the lower the temperature, the longer the incubation period. The higher the temperature, the more females are born. This apparently is the opposite of crocodiles. Like salmon, sea turtles go back to the same beaches they were hatched upon to lay their eggs, receiving an imprint from its unique sand that acts like an inbuilt GPS. They can swim from Kenya as far as Mozambique and even South Africa over decades but they always come back.

Female sea turtles can retain sperm “like a built-in sperm bank” and lay clutches of eggs in 2 week intervals between March and June, but then don’t return for 2 or 3 years. For every 1000 hatchlings, only 1 survives to sexual maturity – that’s about one for each mother every 5 years. Unlike crocodiles, turtles provide zero parental care and the hatchlings have to run the gauntlet of mongooses, crabs and sharks to reach the sea.

David explained that providing 24 hour security to nesting female turtles on remote beaches was impossible, but the hotel works with local fishermen, offering them incentives for conservation such as chest freezers. Recent Kenyan legislation now gives turtles the same protection as rhinos and elephants – poachers risk 20 years in prison or a KSh20million fine.

Turtles are a flagship species to assess the health of the marine environment. Alongside the threat from natural predators, they are in danger from discarded nets, garbage dumped on nesting sites and sea level rise. As they feed on jellyfish, sea turtles are also very vulnerable to swallowing plastic bags; David told us that the banning of them in Kenya in 2017 had led to a 10% reduction in deaths.

Serena spends around $30 on each nest, protecting and preserving habitats and raising awareness through beach cleanups and education. Under their stewardship programme, they had nurtured over 55000 eggs and 46000 hatchlings so far. It was no surprise that alone amidst Kenyan hotels on the global stage, Serena had been awarded a Gold Eco Tourism rating since 2016.

It was so unusual to be out ‘of an evening’, let alone taking notes in a lecture; I felt a little giddy with excitement and exhaustion afterwards as we made our way through the beautifully lit grounds back to the truck.

The next morning, while we were doing our exercises in the landscaped gardens, a gaggle of journalists and cameramen arrived for a press conference. Apparently the Deputy President was in a meeting inside.

I loved these giant chess pieces modelled from over 2500 recycled flip flops by Ocean Sole. One set commemorates marine life presided over by a king and queen turtle; the other documents the life cycle of a butterfly, acknowledging Serena’s other important conservation project: the Butterfly Park, which hosts 67 of the 871 different types found in Kenya. Passionate project manager Maurice Unda has been going out in the early mornings to catch, mate and then nurture butterflies since 2002 when he began with only 6 species.

The kids took advantage of the enormous pool to play piggy-in-the-middle with their Dad, but I wasn’t strong enough to go in. When our friend Bryan Piti unexpectedly called in on his way back from visiting his aunt, Sampson and Ruby went up to the lobby to chat to him but sadly I had to stay in the truck and rest to preserve my energy for the eMzantsi AGM on Zoom that evening. I hated how my severely limited capacity was forcing me to choose between work obligations and friendship.

I finally managed a dip in the pool at the hottest time of the afternoon on the following day, just before we left, straight into traffic on the road going north. Sampson had identified a potential empty beach by a gap in the reef about 20km away. It proved difficult to identify the right dirt road and as dusk was descending, he was on the verge of giving up and going back to the main road when I insisted we persevere, determined to sleep next to a sea breeze. Finally we found the turn off, and Big Reg bounced 2km down the straight and narrow road, luckily with no low trees. As we reached the fork at the end, a glorious cobalt blue sky greeted us and I felt a thrill of promise.

My deserted beach honing radar instinct does the business once again

Sampson ran ahead to check for firmness and came back whooping, before steering Big Reg carefully down the final 100m of sandy path and pulling into the most perfect open spot by the empty beach. By then, it was too dark to see much, and I was far too tired to get out, but the next morning (after a heavy rainstorm thrashing so hard against side of truck made it rock violently) I was delighted to wake to this:

What a place to have arrived at just in the nick of time for Zola’s 14th birthday! In my diary I called it Bliss Beach – to luck into finding it felt like a reward for getting through the trials of the last few months.

Zola’s haul of birthday presents was impressive: 4 books from Ruby, a range of Masi Massive drip she had picked up for me from our favourite local brand in Masiphumelele, headphones and a shirt Sampson brought from the UK. Zola was very chuffed with his new clothes and a chunky ring from Ruby but his face when he saw the watch his Dad had got him in UK! And that was before the pièce de résistance – a skateboard from Uncle Paul – left him completely gobsmacked. Well done team!

As per Sampson family tradition, Ruby also got presents on her brother’s birthday (especially as we weren’t going to be together for hers next month): skate shoes from Paul, 3 books, headphones, a waterproof speaker, a massive box of Maltesers and a plum hardcover suitcase. My present was five days here doing nothing but recovering now number 1 had arrived safely and number 2’s exams were finally over.

Like ‘the President’s Right’ in Ghana on the west coast back in 2014, Bliss Beach was our equivalent deserted paradise on the east side

After Sampson introduced us to local spear-fishermen, muscle-laden Juma and Harold, I was so tired I had to lie down. The PEM in my arms from restarting exercises was terrible. I did manage to read a whole chapter of Romola – it felt amazing to give the effort I usually spent on homeschooling to myself. The kids took themselves for a walk as a tropical squall came over. ‘Truckulence’ felt within reach.

Once again, instead of taking the opportunity to be alone with his wife, Sampson continued to stress out, today’s panic being about transferring video to hard drives which had suddenly become urgent from nowhere. He pushed past me after I had the temerity to point out how this unnecessary angst was poisoning our hard won calm. In the shower, I tried not to sob. He tried very hard the rest of the day.

We were surprised by a visit from village elders at 9am. I wasn’t yet washed, but managed to quickly sweep the floor before welcoming the chief. After ten minutes’ standing talking while all the men sat at the table, I was so dizzy and overwhelmed I sheepishly had to ask to sit down. After they left, I had to lie on the seat until the world stopped spinning. Sampson didn’t come back to check on me, but took himself into the surf. I didn’t know whether he thought I was shamming or was just not coping with me being this weak.

My favourite Instagram pic of 2018: the view from my bed out of the side door of the truck

After I made myself lunch, I lay down to start editing. In the heat of the day, I took this amazing picture from my bed of the glorious view out of the door, but the effort it cost me leaning up on my elbow to get it – causing my heart rate to spike – was shocking. The realisation of quite how weedy I was brought me to sudden tears. As I was apologising for being in this state, Zola was next to me and Ruby was saying “It’s fine, I didn’t want to do loads this holiday anyway, I’m really really tired and need to rest as much as you do”. She was so kind, so comforting, so everything her Dad was failing to be.

After resting the whole afternoon, at 5pm I was able to get out for a 100m walk along the beach with Zola to the overhang of volcanic rock at the end. I ended up sitting down making mini sandcastles with Adnaan 12, Bamba 10 and David 7. A young man passing stopped to chat. Recently qualified Dr Denis Chilumo studied medicine at the University of Nairobi and had come back to Kilifi County Hospital “to serve my people” – unlike local politicians whom he ruefully stated prefer “to grab rather than to serve”. Bless him. It was an honour to meet him, but I had to eat supper lying down because this extra 10 minute conversation took me past my limits.

We watched Get Out again. Sampson loved it.

On the bright side, in this warmer climate by the sea, I was no longer having hourly hot flushes like the last couple of weeks, far fewer. Mombasa’s average high in June, July and August was 27˚C (low 20˚C) compared to 22˚C (12˚C) in Nairobi, and that extra 5 degrees was easing pain as well as freeing up energy I had been using trying to stay warm. I used it to handwash my sweaty bed clothes. We gave a pile away to the local kids who would come and play in the afternoons.

Sampson did a brilliant job of editing the video footage Ruby had filmed of her friends at school for her anti-FGM PSA message. I can’t believe they managed it in one day, while Zola was working out the soundtrack song on the keyboard!

Sampson was saying that after Ruby went back to school, the truck needed to go into a garage for a service. The prospect of another couple of weeks’ exposure to fumes and noise of workmen led me to research the cost of flights to Edinburgh. While slowly going through blog photos of Alexandria, I weighed up the pros of going to visit dear friends amidst festival jollity against the cons of potential costs to health and cash that might be needed for truck or kids. At first I though I would gather myself and push through to manage it – mostly because I thought we needed the break and perspective to save our marriage. But after mulling it over for two days, in the end the stress of too many variables plus airport deadlines felt overwhelming and I resolved to just kick back and let the coast warmth heal me.

If you too would like to experience this stunning spot, search for Maweni House on AirBnB – it’s the pink and white 5 bed mansion (with staff) at the other end of Bofa Beach pictured above – or check out the more affordable Distant Relatives Eco-Lodge and Backpackers, which hosts a famous New Year party at Kilifi.

My husband was being so much kinder to me since Ruby got here. Was that due to her presence, or influence? Either way, my body very much appreciated being allowed to rest. I hadn’t cooked this whole week.

I loved this beach. The emptiness, the wind, the calm. I felt my body could reset here.

On our last morning, when the others were elsewhere, a very little boy with big eyes that I hadn’t seen before materialised next to the truck. He was on the verge of tears, couldn’t speak, and seemed in shock – symptoms of PTSD. I came down the ladder and sat down on the grass next to him. I couldn’t speak words of comfort in his language, but I repeated “it’s OK” gently and touched his hand until his breathing calmed. Looking out to sea in companionable silence, we shared my banana, mango and yoghurt breakfast.

I tried not to feel overwhelmed by how woefully inadequate this was.

Renewable

This blog is dedicated to the beautiful family of Nawir Ibrahim who shine in my memory like a beacon. This was a gruelling week for me – I felt at almost the lowest ebb of the whole trip both physically and mentally – but their heartfelt hospitality carried me through.

We were late. After a long day sorting out truck tax online with the Kenya Revenue Authority then doing a plastic fantastic shop upstairs at Naivas (new bowls, plates, cups and even a sink!) while Zola was writing his EMS exam, we realised with horror that somehow we’d left PJ behind. Big Reg had to go back to KALRO in the dark and we were so relieved when five minutes after calling out and flashing our torches around in the drizzle, she came mewing up to us complaining at such neglectful treatment!

So by the time we arrived at Nawir’s house at 10pm I was flat out on the bed, energy reserves entirely depleted, completely unable to go in. I felt I was being inexcusably rude – the family had waited up for us, and his sons were hovering outside hoping for a chat – but that would have finished me.

In the morning, Big Reg followed Nawir to his office at CAT: the Centre for Alternative Technologies. Nawir has been in the renewable energy business since 1996 and CAT installs solar energy systems in lodges, farms, offices and hospitals across East Africa. His expert team were ready to install a set of massive new solar batteries provided by Dutch company Victron Energy (suppliers of solar energy products worldwide) as well as a MultiPlus II, which they’d just launched. It’s a powerful new product which works as a 3KW inverter and solar charger while also allowing 50 amp charging from the grid, an unprecedentedly swift bonus.

Victron’s batteries were much bigger and much heavier than our originals, so the weight had to be redistributed across two storage cupboards instead of one. This took an extra day and required a hasty re-imagining of interior space. On the bright side, it finally forced Sampson to clear out ‘under the table’; but the dust and upheaval it entailed was a lot to cope with top of the unrelenting cold and lack of privacy as a team of men clambered over the truck for a week with the winter wind blowing through all the open doors and hatches.

We took shelter inside the CAT office. While Zola was writing his English exam, I was making notes for the first east side blog on Egypt. Nawir introduced us to his daughter Dalila, 23, who had just finished her degree in International Development at the University of Sussex in Brighton. She’d only got back from the UK 3 days ago, but she was already working alongside her Dad.

Then her mum arrived: Wow. Umkulthoom Saleh, known as Umi, is tiny but her impact is huge. She radiates light, positivity and joy in the same way her Egyptian namesake shone brighter than any star across the Arab world. She was so luminously genuine, I loved her immediately – and that was before she knocked me out knowing about ME! She has a friend with an autoimmune condition also suffering in their bedroom. To be immediately believed and affirmed I realised had never happened to me before; I was so dazed, I nearly cried.

At 5ish Nawir locked up the office and insisted Zola and I came home with them, saying his wife had cooked especially. Sampson had just swept up an entire bagful of dirt from under the table, but the contents of the storage lockers were still spread out all over the floor, and going to take another couple of hours to pack away, so I was relieved to accept.

Umi was fulsome in greeting and asked her son Ibrahim show us around their comfortable bungalow, a former farm manager’s house, all bay windows and wooden beams. It was strangely reminiscent of the old Victorian house I was brought up in during the 70s, Enid Blyton books and all. During the course of the evening, Umi was moved to tears several times due to our experiences echoing each other’s – firstly when she found out our birthdays were on the same day, although she is 3 years my senior.

She also homeschooled her kids: Musaab (20) was now doing his A levels, while Ibrahim (15) was due to do his O levels next year. Umi told me she was convinced she was experiencing menopause when, 10 years after Ibrahim had been born, she became pregnant at the age of 45! Amara Muneera was now nearly 6. “She had to have a companion” said Umi, so along came Najat, who is 4. I played “horsey horsey” and “I draw a snake upon your back” with the littl’uns and they were so lovely, it made me wistful that my kids were way past such simple pleasures.

That night, Umi served us superb food, as fine as any five star hotel restaurant we have eaten at en route: chili bites with chick pea flour and tamarind sauce, cauliflower pepper soup, coconut chicken, grated beetroot, rice with broccoli. It was so warming and nourishing, I felt bolstered despite my deep exhaustion. On top of that, she sent us home with all our towels washed and dried, and hot clean sheets. What a joy. After we were dropped off by Nawir, Zola ate another handful of the chili bites that had been pressed on us while telling his Dad all about our evening. I couldn’t remember when I last saw him so delighted.

In the meantime, after hearing how cold we were, Bryan Piti had come round to see Sampson bearing bags of groceries and two huge blankets – what a lifesaver! The next day, Saturday 9^th June, I used them to make a bed in the CAT office and lay there writing a proposal for Africa Clockwise and Zijani to the Kenya Climate Innovation Centre.

CAT experts Mr Alex Wango, Stephen ‘Dofu’ Mwambire and Solomon Ochieng were busy wrestling with the installation of two extra solar panels as well as Victron’s fantastic Multiplus II and its colour monitor touch screen.

In the afternoon, Sampson performed the Africa Clockwise show for the CAT staff in their conference room and was gratified to have Mr Solomon gasp at his tricks, although he couldn’t teach this group anything about alternative energy that they didn’t know already!

The CAT team certainly know their Eco-Wasters from their Warriors!

Zola, in a break between exams, was entertaining himself with a new challenge: climbing a ladder while on a unicycle. I finally persuaded him to let go of his old faithful plastic slides from Liberia; he really can’t be accused of being addicted to fast fashion!

After this long day, we were all taken back for supper. Umi had lovingly produced another incredible spread: a huge plateful of freshly cooked triangular khameer, a bowl of gluten-free potato and onion bhajis for me, the most scrumptious fried fish in cumin. She must have been busy for hours. Dalila sat on the floor feeding the little girls, telling us hilarious stories. She’s a great mimic, with anecdotes for Africa. I told her she should be a comedian!

After Umi spent a while expressing her great love for overland exploring, we were suddenly struck with the idea that she should write a Guide for Muslim Travellers to African cities. She would be the ideal person to address this gap in the market! I felt so blessed to sit around and chat in the bosom of this wonderful family, while Sampson did a mini magic show for the little sweethearts. I’m sad I didn’t get a pic of gentle Ibrahim, but like Zola, he does not seek the limelight.

Dear Nawir dropped us home very late. Ibrahim had said he would pick Zola up at 9am next morning to go to and see Deadpool 2 at the cinema and Zola was so anxious not to miss him he was up at 6am and sat outside for an hour and a half!

I was hoping Sampson and I could take advantage of this rare Sunday afternoon alone to spend some quality time together. Instead we ended up having a row so terrible I described it in my diary as ‘relationship-ending’.

When my husband disappeared over to the office to download podcasts on the wifi while stretching, I told myself not to dwell on wasted opportunities and go with the flow. But when he came back at 1.30pm and told me he was going to lie down for the rest of the day because he had a cold – with no thought of preparing food or needing a table to chop on or indeed anything for anyone else – it all came tumbling down. I knew he was stressed about getting back on the road to be on time to collect Ruby, but the gulf in his understanding of just how ill and incapable I was had become overwhelming.

I was aware I couldn’t think clearly, was battling to hold a thread in my head. Too tired, too hurt, too overwrought, in response to his shouting I ended up screaming, then begging. When, an hour later, I was in bits on the bed and he suddenly said “Maybe you’re right”, there was no comfort in it. I didn’t ever want a day like this again. I couldn’t cope with anymore. I was so completely knocked out by upset that I couldn’t eat but fell dead asleep for an hour, shattered.

I had been looking forward to a quiet day writing. But I had wasted a day of rest, and put myself through a pointlessly exhausting ordeal. I was beyond grateful that Umi sent a parcel of mutton and chick pea curry back with Zola, because when Sampson finally started frying an onion for supper, the gas had gone. She has no idea how vital that sustenance was that terrible night when I felt driven half mad by grief and despair.

Desperately drained, I only survived the next day thanks to moringa. While Mr Alex and his team moved batteries into the wardrobe, I supervised Zola’s Maths exam in the office. Bryan and the Zijani team delivered 320L biodiesel, and hoisted it up under the brand new solar panel. Sampson was so happy to be stocked up – this stash should see us home.

We were so blessed to find such incredible supporters here in Kenya. Victron took our solar capacity to the next level, but it was thanks to the ministrations of Nawir Ibrahim and the Centre for Alternative Techonologies team, and Bryan Piti and Ziljani that we made it into the last quarter of the journey.

Both of us were appalled by what had happened on Sunday, and were trying hard to be better. At supper, Sampson said that today he realised he has always felt that physical truck repair stuff is ‘not his thing’ – that someone else more practical should rather be doing it, like his Dad or his brother. He’d been slightly resentful of me as a result, but suddenly saw that was unreasonable. I had also been reflecting on his fragile mental state and realised I can’t be thinking I’m the only one with major health challenges to contend with. Our mutual apology – or at least acknowledgement – brought us a step closer.

On Tuesday, in the middle of the night I woke feeling very poisoned, though I couldn’t tell by what. I felt so confused: it must have been some industrial toxin in the air just released because I was gasping and had pain in my chest. I felt so nauseous I got on my hands and knees, but could not get out of bed. My husband kindly got up to get me a drink of water and open all the windows. It was frightening because I didn’t know why it was happening – but thankfully it had abated by morning. But the next day, while Zola did his science exam in the office, I was also struggling to avoid paint fumes in the yard.

Through Wednesday night, I had huge hot flushes every hour which left me like a limp rag. At 6.40 I woke in absolute hell. The pain was like I’d been beaten everywhere. I knew Sampson wanted the guys to start work at 7.30 so we could be on the road before lunchtime, but I could not surface. I felt 90 years old, and only managed to crawl out at 8am. I did T’ai Chi excruciatingly slowly, so embarrassed still to be there in the way. But as Steven finished off the final wooden shelving and Zola started his final French revision exam, Umi appeared, full of joy. She clasped my hands, delighted that due to our ‘inspiring’ example, Nawir had agreed to travel overland to Sudan for their next holiday!

I found their love story far more inspiring. Over a cup of rooibos, Umi shared that her parents were apparently not keen on Nawir initially because he was not Yemeni Arab like her family. “Islam kept us together” she said, simply. Nawir’s grandfather was from the Comores, but his grandmother Dorothy Patterson was South African, a mixed race daughter of a ship’s chandler who had two children with a Dutch ship’s chef. They left SA because of apartheid legislation while Nawir’s father was still in the womb. When the chef died, Nawir’s father was born in Zanzibar and she became a single mother in Dar es Salaam. Nawir still has relatives in Simon’s Town and had recently bought a holiday home in Port Elizabeth, where they love to escape to.

I was fascinated by the rich tapestry of intertwined family histories along the east African coast that Umi was weaving for me and longed to hear more, but it was definitely time for us to leave them in peace. But I will never forget her generosity of spirit – how she selflessly devoted herself to providing sustenance to all of us, Umm to everyone: family, staff and visitors. She had no idea how depleted I was, or how grateful for her example of commitment to happiness.

As Big Reg pulled out of Nairobi around 2pm, PJ was getting herself in a right old state. It seemed like she had forgotten what it was like to drive for any length of time, and was mewling in anguish. It was very upsetting, because her crying was reminding us of Lucky’s painful end in Khartoum. I stroked her and sang to her for so long, I fell asleep sitting up in the passenger seat with her draped on my arm.

PJ finally at peace

* * *

If you are able, please help me to complete the Africa Clockwise story via Patreon.

A Pause for the Prisoners of Sub-Conscience (Sick Consciousness part 2)

I had a different plan for this blog. But that was before.

Before NICE (the UK’s National Institute for Health and Care Excellence) folded to pressure from Very Important Psychologists at the Royal Colleges on 17^th August and halted publication of their new treatment guidelines for ME/CFS, at the legal end of a three year process, literally at the eleventh hour.

Before, I finally made it to Barcelona in mid-September for brain and spine scans I’ve been needing since 2018 that are impossible to obtain in South Africa.

Before I knew for sure.

‘Pause’ has taken on a whole new meaning since then.

* * *

To set the scene, let’s refresh our memory of the history of ME since the 1950s by means of Professor Brian Hughes‘ seminal TikTok, which sums it up far more succinctly than I did:

@bmh555

The Royal Free outbreak, a key moment in the history of medical sexism #psychology #royalfreehospital #mecfs #mecfsawareness #pwme #pseudoscience

♬ original sound – Brian Hughes

30 years ago I got sick with glandular fever. I never got over it. ‘Post-viral fatigue syndrome’ sounds mild, doesn’t it? It doesn’t encompass the life-wrecking balls-up that is Post Exertional Malaise.

30 years ago, ‘psychologicalisation’ of chronic illness was at the peak of its power. My GP was reluctant to give me a diagnosis; after 6 months of 20-something me turning up with exhaustion and diarrhoea and anaemia and nausea and bloating and arthritic pain and spasms and sore throat and light sensitivity and hair-falling-out-in-clumps, the words ‘Myalgic Encephalomyelitis’ seemed dragged from her against her will.

30 years ago, there was no internet to share our stories, our survival strategies, the history of our disease. But now, with the biomedical research evidence overwhelming, the arguments for Graded Exercise Therapy and Cognitive Behavioural Therapy thoroughly discredited and Long Covid numbers rocketing, it’s only the Very Important Psychologists who continue to suffer from ‘false illness beliefs’: that is, their false beliefs that post-viral illness is not cripplingly real.

* * *

Let us pause for a moment to consider the impact of the psychosocial paradigm in the intervening years.

The dehumanising treatment that Sophia Mirza was subjected to before her early death in 2005 (that I wrote about in Sick Consciousness part 1) is far from unusual. Katrina Hansen, a young Danish woman featured in the ME documentary Unrest, was hospitalised against her will for three years from 2013. At the end of 2020, another international campaign had to be launched to draw attention to the plight of Holger Klintenberg, a 35-year-old Swede ill since the age of 19, who was under threat of being forced into institutionalised psychiatric care.

In the 1980s, Ean Proctor, a British boy whose ME became so severe that he was mute and immobile at the age of 12, was taken from his home and put in a psychiatric hospital for nearly 6 months. His mother said “They thought we were making him ill. Ean was in a wheelchair, he couldn’t speak, his hands were in tight fists. He was all skin and bones—he looked like something out of Belsen. How could he do anything?” According to an interview with Ean conducted by Dr Anne Macintyre for a Channel 4 documentary in 1993 (from 19.00), he was subject to inhumane treatments including being left to soil himself and to sink in a swimming pool to try and snap him out of his ‘psychological illness’.

Yet it’s often the parents of sick children who are being accused of child abuse, not the consultant psychologists. Jane Colby of the Tymes Trust, who has been monitoring children with ME in UK since the 1990s, said in 2019 that the number of families who have been investigated had reached 232, with over a hundred cases alone since 2014.

Please watch this short video of Dionne Joseph from last year, describing her battle to keep her severely ill teenage daughter Jehan ‘Gigi’ Joseph-Garrison from being forcibly removed to a psych ward and made to engage in harmful exercise therapy, despite Dionne being an experienced clinical psychologist herself.

Please be witness to the picture of Gigi in hospital aged 18 weighing 36kg included with her permission in this article.

* * *

Today Monday 18th October, 2 months since the new treatment guidelines were “paused”, NICE is hosting a Roundtable meeting to “discuss concerns”. It will be presided over by an “independent chair” Dame Carol Black, initiator of the ‘Fit for Work‘ government policy designed to deny benefits to the invisibly ill and a proponent of exercise as the answer to all things.

* * *

The Pause tattoo I got back in August looked a bit rough around the edges – like the guy who did it. While I was checking out his biker’s beard, faded tats and silvered teeth, he was looking askance at my shades and ear defenders. He must have thought I was a right wimp. But when he got going with his needle gun, I started laughing softly – why had I ever worried the process might be too much for me? This wasn’t even 0.25 out of 10 on my pain gauge!

The chronically SICK are living on a different scale of suffering to the Well. The Well can’t even begin to imagine the scope of ours.

The Society for the Inclusion of Chronic Knowledge has a lot to share with the world.

* * *

A month ago, my daughter escorted me in my wheelchair from my folks’ place in Malaga on the plane to Barcelona to see one of only 4 specialists in the world in Cranical Cervical Instability (the other 3 are in the US). Due to the pandemic, I had been waiting 2 years to get to Spain from South Africa to have these very expensive upright and supine brain and spine scans.

I was diagnosed with CCI and Atlantoaxial Instability, between the C1 and C2 vertebrae. The scans also clearly showed that cervical settling on my ‘loose’ spine is compressing my dominant jugular vein. As a result, deoxygenated blood and cerebral spinal fluid are not being drained from my brain, effectively drowning it in its own shit!

It precisely explains the increased feeling of brain fog I’ve had since my second concussion en route Africa Clockwise in 2018, as if my head was being held underwater.

In recent years, CCI/AAI has been shown to be affecting an increasing number of ME patients. For a significant number of us, it seems ME is a relapsing/remitting progressive disease like MS, with a post-viral collagen breakdown causing blood oxygen starvation to our muscles and brain, hobbling our cellular energy metabolism. For me, after three decades, the severely disabling neurological, endocrine, dysautonomic and gastro effects of this are being compounded by the fact that ligaments all over my body are collapsing; in the last few years I’ve had problems with my hips and ankles as well as my neck. The surgeon believes I also have the connective tissue disease EDS as the MRI also revealed a Tarlov cyst at the base of my spine.

My personal theory is that the overlapping chronic illness cluster of ME, Fibromyalgia, EDS, POTS, MCAS and other co-morbidities may all end up under the umbrella of one wide-ranging diagnosis (like ‘cancer’) once adequate research is undertaken. The escalating prevalence of Long Covid – a very similar debilitating post-viral condition – may be the thing that finally unlocks the necessary funding and focus.

It was life-changing to get a physiological validation of my symptoms after all these years. Not least because since wearing the recommended rigid cervical collar (that lifts my head and allows my jugular to drain) my PEM has subsided so considerably that my capacity has been boosted by almost 50%. I can now walk more than 200m without having to stop and lie down, and stand up long enough to cook.
My brain can breathe.
I can think.
I can articulate my incandescent anger.

Anger on behalf of millions of people languishing in completely avoidable purgatory because of the hubris of a handful of arrogant men. Without their bullying interventions dominating the field and diverting decades of research, we could have had medication to manage this disease by now, maybe something as simple as insulin for diabetes.

* * *

My life has been on Pause for long enough. NICE has no right to pause these guidelines and extend the suffering of people with ME. To allow more innocents to exercise their way into wheelchairs.

* * *

My Pause tattoo is a bit skew, like a door stamp for a nightclub, hastily stamped inside your wrist as you shuffle in on a sweaty Friday night. It makes me think of all the youngsters who queued up in lines outside clubs cross Britain all through the summer, jam-packed against each other, not knowing which of them was going to be randomly selected for completely avoidable permanent sickness, thanks to their callously negligent government.

Boris Johnson has been playing Russian roulette with Gen Z – letting the Delta variant of the virus run amok among them, gambling on herd immunity ahead of winter. He’s knowingly condemned at least 10% of young COVID-19 victims to long-term disability, and potentially 25% of that Long Covid cohort to Severe ME.

Many just children like Ean.

* * *

The poorly inked tattoo brings to my mind the carelessly carved identification numbers on the left forearms of Auschwitz camp survivors. They had no agency when fate marked them out for cruel and brutal treatment.

A couple of years ago, there was controversy over whether the empty shoes of ME Action’s Millions Missing protests showed gross insensitivity to Holocaust survivors and their families, triggering memories of Nazi gas chambers, drawing inappropriate parallels. Of course this is not genocide; chronically sick people are not being deliberately rounded up and killed.

But who are we to judge? Surely only the Very Severe themselves are qualified to quantify their suffering in comparison to such heinous persecution? Are there fates worse than death?

Whitney Dafoe’s recent testimony gives us a rare glimpse into their existence:

Have people with ME not been vilified to the point of dehumanisation? Are they not victims of a hate crime, a big lie proposed by the psychiatrists who commandeered the field in 1970 and maintained by well-funded propaganda ever since? Are not the most severe, the most vulnerable 25% – many youth and children – being treated the most cruelly? Even, as Dionne Joseph described, “almost tortured” by being made to do exercise in hospital?

Are they not being deliberately disappeared into the category of ‘Medically Unexplained Symptoms’ while basic research funding is denied and the world looks another way? Until people with ME and Long Covid are counted in official statistics, their suffering won’t count either.

There are millions way too ill to sit up or speak, let alone stand up and protest. The Well can’t see the Sick in our darkened rooms. We are beneath your radar, and half the time brain fog makes us barely conscious of ourselves.

It is time to reframe severe chronic illness as a human rights issue. As prisoners of sub-conscience, condemned to solitary confinement without any prospect of parole, we must appeal to Amnesty International to challenge government and medical industry abuse of people living in post-viral purgatory.

Silence = Living Death

#LonghaulersUnite
#SICK

KALRO Kindness

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

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

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

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

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

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

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

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