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

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

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

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

* * *

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

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

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

* * *

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

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

* * *

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

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

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

* * *

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

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

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

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

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

* * *

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

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

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

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

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

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

* * *

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

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

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

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

It doesn’t look dangerous.

* * *

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

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

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

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

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

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

* * *

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

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

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

* * *

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

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

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

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

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

* * *

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

* * *

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

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

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

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

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

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

* * *

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

* * *

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

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

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

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

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

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

* * *

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

His courage in the face of all those pesky patient activists who, despite Wessely’s refusal to acknowledge the biomedical evidence of more than 6000 peer-reviewed papers over the last 30 years, continue to insist their disease is real?

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

* * *

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

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

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

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

* * *

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

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

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

* * *

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

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

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

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

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

* * *

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

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

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

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

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

* * *

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

* * *

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

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

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

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

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

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

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

* * *

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

* * *

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

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

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

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

Allies, will you join us?

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

Allies, will you march for us?

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

Allies, will you speak up for us?

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

Allies, when will you step up for us?

* * *

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

* * *

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

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

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

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

* * *

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

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

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

* * *

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

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

* * *

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

* * *

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

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

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

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

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

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

* * *

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

* * *

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

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

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

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

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

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

Like a hydra we will rise.

* * *

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

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

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

* * *

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

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

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

* * *

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

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

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

* * *

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

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

* * *

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

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

The survival tactics spoonies adopt are good advice for all humans: try not to look back, only forward. Don’t think about the time you’ve lost, just about making the most of the time you have. Don’t dwell on what you can’t do anymore; focus on making the most of what you can. (The irony of forgetting the content of this paragraph twice in the writing of it, the enforced calm, the patience, waiting for the sense to float near enough back to me so I can make a grab for it and pin the meaning down. I can’t even work out if it is irony.)

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

* * *

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

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

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

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

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

* * *

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

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

Truckulence on the coast of Kenya

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

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

Advertisements
Posted in 00 M.E. | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 19 Comments

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

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

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

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

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

What a salve for the weary winter traveller…

to finally arrive at a place so warm

Look at all the welcome mats laid out below!

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

* * *

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

Hand luggage from Athens airport

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

Safely squashed into our seats

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

You can tell how much this dog is loved…

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

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

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

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

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

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

* * *

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

Not a bad place to be stranded for a few days

It even had a T’ai Chi area

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

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

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

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

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

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

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

Sampson became a big fan of El Falah kebda restaurant

where fingers of the freshest just-delivered bread…

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

And oh to be back where tomatoes taste of tomatoes!

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

It was also gratifying to see…

that the female ideal portrayed in Egyptian adverts…

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

I didn’t get to see the sights of Alex

apart from sitting in traffic

and more traffic

and the view along the corniche

But although the city’s crowded

so much of it is beautiful

you can see why Cairenes flock there every holiday

I was sad not to be able to see more

* * *

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

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

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

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

It doesn’t look dangerous.

* * *

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

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

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

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

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

The view from the penthouse

Mohamed Galil and Bolt, his 11 month old Rottweiler puppy

(bizarrely he hadn’t heard of the movie)

Monte knew his place

Though he worked up the courage to say hi

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

Michelin Man went missing

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

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

Tsk, any excuse for a distraction…

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

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

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

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

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

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

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

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

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

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

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

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

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

Welcome to Egypt

Quite surreal

Bless ’em. Just lads.

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

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

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

Big Reg parked next to the first military post

At least we got a beach walk

Monte was getting the hang of walking to heel

and exploring

Zola posed for his latest album cover

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

Flies on the bed

Flies on the towels

Flies on the textbooks

Flies on the table

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

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

Being escorted to the mouth of the Nile

The soldier took this souvenir pic for us

Crossing the Nile into Rashid

a picturesque place

with imperious overtones

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

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

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

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

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

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

Sampson jnr taking it to the next level as usual

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

Our dear friend Karim Elsadani

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

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

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

Africa(‘s not had its) Day

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

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

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

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

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

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

‘Wolof Fame’ from Dakar Biennale 2016, Senegal

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

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

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

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

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

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

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

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

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

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

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

 

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

 

 

Posted in 20b All Africa | Tagged , , | 7 Comments

Not the Acropolis

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

Back to the city

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

Funky Athens

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

All roads lead to the capital

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

Greeks inspiring us with innovative ways of travelling with a dog

Cats on laps much easier in my experience

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

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

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

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

* * *

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

I was 24.

From the Bench

She sits like Patience on a monument
Smiling at grief

Twelfth Night, II iv 115

I               

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

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

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

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

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

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

The most frightening thing is content.

* * *

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

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

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

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

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

This was the closest I got to the Acropolis

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

and the exciting view of excavations in progress below.

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

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

sleeping on the pavement outside Louis Vuitton #This Is Europe

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

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

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

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

At last, enough parking space for Big Reg

and loads of room to exercise

A thousand thanks to the Hellenic Cycling Federation for their hospitality

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

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

* * *

II             

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

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

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

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

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

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

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

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

Winter is ever within me
Withering my vitals.

* * *

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

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

Because I’m worth it

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

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

We all slept better that night

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

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

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

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

* * *

III           

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

I am no longer
Caring and carefree
But cared for.
Comforted.

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

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

My life is the fitful nightmare of frozen motion.

My ambitions sit beside me on the bench
Arguing with Patience

I look forward
Gathering myself to walk on.

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

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

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

I want to dance again
On any old ankles

And be glad for this time
Pausing in the shade.

* * *

Those last three days in Greece were hectic.

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

It’s a good job they’re cute

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

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

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

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

How we managed to transport Monte from Greece to Egypt

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

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

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

A glimpse of gorgeous Plaka – wish I could have explored

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

Giorgos Daskalakis and Kiara Tzivraili

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

for more pics like this!

and this!

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

Sampson holding the baby

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

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

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

Rush, rush, rush…

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

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

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

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

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

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

Goodbye Greece, and thank you

Posted in 20a Europe | Tagged , , , , , , , , | Leave a comment

A Crateful of Pomegranates

There was no denying it. Sampson was in love.

Devotedly

and

hopelessly

Besotted

Can your husband have an affair with a dog? Granted, Monte was a darling. Young, energetic, doe-eyed, silky-haired and constantly adoring – what’s not to love?

Dohhhhh

*Sigh*

So we went back to the lovely vet Dr Dimitri and got Monte and Lucky jabbed, microchipped and registered for €100 each.

Sampson with the kind and thoughtful Dr Dimitri Karamaridis

Preveza’s finest vet

who, with the help of his practice partner Bourkard Schwartze

sorted Lucky and Monte’s pet passports for the crossing back to Africa

But Preveza felt as tired and put upon as I was. The evidence of EU-imposed austerity was everywhere. There were so many empty shop fronts in the backwater towns – about a third of every high street – Greece had a feeling of being half abandoned itself. The run down pet shop was full of dust and piles of faded stuff.

Still, we spent another €100 on special food

and bowls and toys and a new bed

I shall remember Greece for orange trees after rain…

for citrus-flavoured chocolate (it took me months before I was well enough to eat mine)…

for the Greek yoghurt that now wasn’t!

dozens of heart-wrenching roadside shrines commemorating lost loved ones…

wistful graffiti…

and the farmer who didn’t mind at all that we’d parked overnight in his olive orchard but greeted me so kindly

As the pattern of being awake from 2am-5am between doggy doings became entrenched, everything was taking longer. Two hours to get up, then T’ai Chi was becoming slower and more painful. I was feeling sick all the time, not just nauseous after eating. I strapped myself into the passenger seat surrounded by cushions, with a travel pillow to support my neck and carried on. But whenever we stopped, the resultant brain-rattle hangover was making me feel very ill indeed. I was beginning to wonder if I could even withstand travelling in the bumpy truck all the way home.

* * *

By some cruel twist of fate, the person most responsible for the misrepresentation of M.E. – a disease first documented by Dr Melvin Ramsay following an infectious epidemic amongst 292 staff at Royal Free Hospital in 1955, mostly nurses – is Dr Simon Wessely, a fellow graduate of University College, Oxford.

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

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

Sir Simon Wessley took this patronising arrogance to the next level in the late 80s/early 90s – deliberately recasting M.E. as a psychosomatic condition called ‘Chronic Fatigue Syndrome’, a term adopted by the Centre for Disease Control in the US in 1988 following the Lake Tahoe epidemic of 1984/5 affecting around 175 people in Nevada, which was infamously characterised in the press as ‘Yuppie Flu‘.

This summary of Dr Wessley’s contribution to M.E. research (or the derailing of it) by the heroic Margaret Williams is well worth reading if you can stand it. I’ll be honest, it took me four months to work up the strength to do so because when it was published last Christmas I was at such a low ebb, I knew if I attempted it, my anger would lay me out flat for a week.

Let me try and distill the dilligent labour of Margaret Williams into a few choice quotations:

“Dismissive of the fact that the WHO has formally classified ME/CFS as a neurological disorder since 1969, Wessely has spent the last 30 years denying the existence of ME and striving to get “CFS/ME” re-classified as a mental (somatisation) disorder…

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

In 1989 Wessely wrote in the British Medical Journal:
“(neurasthenia) is back with a vengeance. My local bookshop has just given ME the final seal of approval, its own shelf. A little more psychology and a little less T-cells would be welcome”. (BMJ 1989:298:1532-1533).

Much was already known at that time about the role of dysfunctional T cells in ME/CFS but such was Wessely’s influence that his personal beliefs prevailed throughout the NHS: important research findings were ignored, with Government and other institutions such as the medical insurance industry gratefully and uncritically accepting as fact Wessely’s assertions that ME/CFS is a behavioural disorder, thus depriving claimants of financial support to which they were legitimately entitled….

Wessely is renowned for his damaging assertions about ME/CFS, some of the more memorable ones being:

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

“It seems that ME sufferers prefer to feel that they have a ‘real’ disease – it is better for their self-esteem (and) the label ‘ME’ helps legitimise their dealings with doctors” (Report of meeting held on 15 April 1992 at Belfast Castle; Pfizer Invicta Pharmaceuticals, pp4-5)

“I will argue that ME is simply a belief, the belief that one has an illness called ME” (9th Eliot Slater Memorial Lecture, Institute of Psychiatry, London, 12 May 1994)

“The term ME may mislead patients into believing they have a serious and specific pathological process….The possibility that abnormalities of immune function play a role in the pathogenesis of CFS has attracted considerable attention. Such abnormalities should not deflect the clinicians from the biospsychosocial (psychiatric) approach and should not focus attention towards a search for an ‘organic’ cause….No investigations should be performed to confirm the diagnosis” (Joint Royal Colleges Report on CFS, October 1996)

“The majority of patients seen in specialist clinics typically believe that their symptoms are the result of an organic disease process…. Many doctors believe the converse….Many patients receive financial benefits and payments which may be contingent upon their remaining unwell” (Gen Hosp Psychiatry 1997:19:3:185-199)

It is only human for doctors to view the public as foolish, uncomprehending, hysterical or malingering …..One challenge arises when patients have named their condition in a way that leaves doctors uncomfortable, as occurred with chronic fatigue syndrome….It may seem that adopting the lay label (ME) reinforces the perceived disability. A compromise strategy…would mean treating chronic fatigue syndrome as a legitimate illness while gradually expanding understanding of the condition to incorporate the psychological and social dimensions” (BMJ 2003:326:595-597)

It was twenty eight years after Wessely successfully called for “more psychology and less T-cells” that on 27th December 2017 The Open Medicine Foundation announced the First T cell Project Meeting for the ME/CFS Collaborative Research Centre at Stanford.

““OK folks, nothing to see here, move along please” seems to have been his standard response to everything he has investigated when he has been proved wrong, for example, ME/CFS, Gulf War Syndrome, the potential dangers of mobile phones, and the Camelford poisoning disaster, a stance which seems to have made him useful to UK Governments of whatever party and he has been rewarded accordingly: a knighthood and a Regius professorship are not awarded for speaking inconvenient truths that may expose vested interests and the incompetence and liability of Departments of State….”

* * *

We paused in Itea, a humble little town on edge of the Gulf of Corinth. I imagine it’s very busy in summer, but there were no tourists in winter, and you got the feel of an intimate community going about their business.

Beautiful Itea

from below

and above

I loved how in Greece, bicycles everywhere were left unattended, unlocked. Kids playing carefree on the jetty would throw their bikes down and run off laughing. This would be unimaginable at home in Cape Town. What a lovely way to be.

We parked off by the harbour

First thing in the morning, Sampson and son were outside in the sunshine taking Monte on his first walk around the harbour. They made a video of Zola doing tricks on his unicycle – it was just 6 weeks since he got it. I was unable to take part in that section of day because it was taking me so long to get up. Monte was getting stronger, wrestling Lucky and giving as good as he got. His legs were a bit wobbly, but he was trying to gambol. I felt a similar level of capacity myself.

* * *

Following my diagnosis in late 1993, I started arming myself with information.

My mother was horrified at the list of recommended dietary restrictions that arrived in the post from Action for ME: “What on earth are you going to eat?!” But only by cutting things out of my diet, did I become able to recognise the drastic effects they had on me when reintroduced and how much energy they consumed as I struggled to digest them.

One of the first things that pwME (people with Myalgic Encephalomyelitis) realise is that they competely lose all tolerance to alcohol. I hadn’t been able to drink since an epic night on Mekong whisky in Thailand in 1992, as now the after-effects of even half a glass of wine were so horrible: legless and the hangover from hell. Now I came to realise that caffeine gave me an instant migraine. Sugar made me nauseous and sweat buckets. But by far the greatest culprit was gluten. As soon as I stopped eating wheat, I started feeling better. Eventually I reluctantly had to abandon rye and oats as well. The consequences were too blatant to be ignored: 8 months’ pregnant-bloating within 20 minutes, excruciating pain and a feeling of toxic shock.

After several months of trial and error, I found that sticking to rice, pulses and vegetables was least demanding on my system. Anything processed, anything with additives, anything unnatural would immediately make me ill. I found myself lucky amongst pwME that I could still tolerate fruit. (I may not have been able to get drunk in 25 years, but I have been incredibly blessed to enjoy melon, mangos and strawberries. How would I have survived this trip without being able to eat bananas?)

I found out there were some famous people who had M.E.: round the world yachtswoman Clare Francis and Chariots of Fire director David Puttnam among them. Florence Nightingale and Charles Darwin, who both retired indoors with unexplained conditions after hyperactive early lives, were also suspected sufferers. I wondered if ME might be what had affected the poet Elizabeth Barrett Browning and why she loved living in Italy.

(Since then jazz pianist Keith Jarrett, author Laura Hillenbrand, soccer player Michelle Akers, director Blake Edwards, actors Cher and Michael Crawford, musicians Randy Newman, Stevie Nicks, Flea from Red Hot Chilli Peppers, the keyboardist of Suede, the lead singer of Belle and Sebastian, rapper Trip Lee and Lady Gaga have joined the list.)

Our harassed and exhausted Coventry GP, who hadn’t given me more than 5 minutes attention before, turned out to have a wife incapacitated with M.E. for more than a decade. But even he couldn’t give me any useful advice beyond ‘Rest, rest, rest’. Still, I could not keep warm. I couldn’t stand up for more than a minute. The only way I could go shopping was on a municipal mobility scooter looking like a pensioner. Except a pensioner wouldn’t be laid out flat for 2 days afterwards. I sat huddled indoors by the radiator in a black wool overcoat. More than once I had muscle-spasms around my heart so severe that I couldn’t breathe in for several minutes. There was no option but to learn to be patient the hard way: keep calm or you don’t get to carry on.

Desperate times call for desperate measures. My Mom decided to send me to stay with her sister in Johannesburg, a place I had never planned to visit, but with an average February temperature of 26˚C.

It was 1994. What a time to witness history happening in South Africa.

* * *

A group of giggling girls about Ruby’s age watched me do T’ai Chi that morning. After I finished, I went over and explained to them what I was doing and why:
“Don’t laugh at other women. Life is hard enough, we must stick together.”
Chastened, they agreed. One of them told me proudly that she did Tae Kwon Do.

They explained they were off school because tomorrow was the Public Holiday Ohi Day commemorating 28th Oct 1940 when their prime minister Metaxas defied an ultimatum from Mussolini, with a spirited “No!” which prevented an Italian invasion and precipitated Greece’s entry into WWII. This was why the sea scouts were practising marching up and down with their flags. I hiked up the road to get copies of documents for Ruby’s Egyptian visa so that Sampson could post the original Parental Consent Affidavit to SA to allow her to travel.

During school time, I read a review of the film Unrest, written by a woman with severe ME who said the opening shots of the film where the protagonist was crawling up the stairs had only made her feel jealous, as she hadn’t left her bedroom in 15 years. This gave me some much needed perspective. I felt gratitude to be in the world at all, even for fraction of the day. I wrote in my diary:

“I am very aware that if I was living at home, I would not see my son at all during my functioning time of day. In this moderate state, before 10am and after 5pm I’m pretty useless. So I feel very lucky to be spending lucid time with him when he can still experience me as an intelligent being.”

The bitter wind had me piling on boots, a jacket and my fake furry leopardskin hat to go one block to the supermarket. Zola was also feeling hyper-sensitive, but to the sharp looks and suspicion of the refugee-wary locals:
“Mom, what percentage of people are racist?”

I didn’t want to dismiss or downplay his fears so I explained the background to theirs, but to cheer him up added,“Don’t underestimate how gorgeous you are – quite a lot of those looks are ‘wow’ ones – you’d better get used to it for when you’re famous!” I’d seen the girls checking him out that morning…

It worked: he gave me a sheepish grin. We drove out of town and found a quiet place by a deserted hotel, next to the sea.

Peace

sunshine

and fresh air

* * *

The Wessely School’s convenient blurring of the distinctions between people suffering debilitating fatigue as a result of clinical depression and other chronic conditions and people with ME, an organic neuroimmune disease caused by an as yet unidentified viral trigger, has led to GPs insisting on inappropriate and – in a tragic number of cases – detrimental treatment advice.

Wessely-sanctioned Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are the only treatments currently offered by the NHS to ME patients. Yet the results of the enormous PACE trial, published since 2011, ‘proving’ their effectiveness have been thoroughly discredited – thanks to the superheroic efforts of an international cohort of citizen-scientists and maverick Californian investigative public health journalist Dr David Tuller exposing egregious scientific shortcomings and manipulation of results. Open letters 2015-17 to The Lancet and Psychological Medicine signed by more than 100 scientists and 50 ME charities from countries around the world asking for an independent reanalysis of the data have yet to receive a response.

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

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

GET has proved significantly counterproductive, leading to many moderate pwME relapsing with post-exertional malaise into years of severe suffering. Unsurprisingly this has caused depression and despair for many.

The following are difficult to read, but please, I beg you, as we approach  #MillionsMissing ME Awareness Day on May 12th, do the mothers of these young women the courtesy of clicking on their names and bearing witness to their stories:

In 2017, after 6 years bedridden, 10 days after her 21st brithday, Merryn Crofts passed away and became the second person in the UK to have ME cited as cause of death. Those of us outside UK can’t see this Channel 5 news clip of her mum Clare Norton, but read her account of her daughter’s bravery and salute her dignity:
“what other illness gives the least attention to the worst affected?”

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

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

Australian Alison Hunter died in 1996 aged 19 after a decade of suffering. She was the founding president of MEYA (ME Young Adults) in Sydney.

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

Martin Lev director of Action for ME and former child movie star committed suicide in 1992 aged 32.

Vanessa Li of Hong Kong committed suicide in 2015 at 34 having been ill since she was 19. She was a founder of the crowdfunding campaign for the Microbe Discovery Project.

Dr Nancy Klimas, Professor of Medicine and Immunology at the University of Miami and one of the world’s foremost AIDS and ME/CFS physicians said in the New York Times, 15th October 2009:
“I hope you are not saying that (ME)CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses I would rather have HIV.”

Stanford Professor Ron Davis, who used to work on the human genome, has said:
“This is a much more serious disease than many of the other things that people are worried about. It’s more common than MS, it’s more common than Parkinson’s disease, it’s more common than Aids. This is probably the last major disease that we know so little about. And it’s because of its nature that it’s been hidden. The severe patients are often just in their home being looked after by someone and no one knows they exist. But it can get very severe, people have tried to make some measures in terms of debilitating illness, it’s generally viewed as worse than many other diseases that have been ranked in terms of quality of life.’’

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

For HIS courage???

His courage in the face of all those pesky patient activists who, despite Wessely’s refusal to acknowledge the biomedical evidence of more than 6000 peer-reviewed papers over the last 30 years, continue to insist their disease is real?

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

We continue to ‘make a fuss’.

* * *

As I couldn’t walk that far, I had to miss the Ohi Day parade. Instead I spent the weekend doing washing with Zola’s help because my arms were not up to wringing the clothes out. In between, he taught himself how to bunny hop off a step on his unicycle, which was very impressive. Sampson was bleaching and gaffer-taping the holes in the floor in an attempt to get rid of the smell of dog pee.

Phew

Huge achievement of hand-washing

which had to be rehung inside because of sudden rain

At dawn through church bells, I was dreaming of Hub, yearning for him. I woke up and realised that my libido had surfaced for the first time in months and I needed to seize the moment. I snuck into bed with Sampson, confident that the teenage zombie upstairs couldn’t be disturbed.

My man was keen and conscientious as ever and I was totally ready despite the pain in my joints making relaxation difficult. I moved on top and we were so nearly there together – he looked so beautiful, underneath me in the half light, just shaved last night, his face like the young him. Then suddenly I was crying – I had had so clearly a sense that this could be The Last Time. “Am I nuts? Am I torturing myself unnecessarily? Or do I genuinely know my body after all these years of living with this, and know how rapidly I’m deteriorating?

He came when I put my hands on his torso and I was happy, just to have felt well enough to try. I don’t think it was possible for my body to orgasm today, it requires too much energy and I was too weak. But at least I slept another hour cuddled together, and that felt like a gift. I woke with a GASP – the second time this week. Why do I feel like I can’t breathe enough? Is it because we have an extra being exhaling carbon dioxide into the truck? (Dog under the bed.) Or because my blood cells are getting less efficient at making oxygen?”

* * *

My aunt in Johannesburg hadn’t seen me since I was 12 and didn’t know me from a bar of soap. She was aghast to see me sleeping so much and took me to her doctor, an overconfident man of 30 who didn’t listen and proscribed Prozac. I refused to take it. I knew I wasn’t depressed – I’d been at my happiest ever when I first fell ill while travelling in 1992; in 1993 when I deteriorated I was living the life of freedom and theatre I’d dreamed of. My body just couldn’t handle the twin challenges of a malfunctioning immune system and a cold climate.

South African sunshine saved me. The energy my body didn’t squander on trying to stay warm it could put into building up my strength. Slowly but surely, I became more resilient. Being in such a fascinating place at such a fascinating time helped – I spent the first month reading an encyclopedia of South African history and the weekly Mail&Guardian. I was honoured to work processing the queues at a polling station at the first democratic elections in April 1994, getting blisters adding last-minute IFP stickers to thousands of  ballot papers and explaining the difference between national and provincial votes to men in leg irons at Leeuwkop prison. I was also delighted to be taught how to speak South African by my young cousins who would not believe that ‘naartjie’ wasn’t an English word.

After a few months convalescing at my aunt’s, I moved to Cape Town to share a flat with her friend’s son in Vredehoek. I felt so much stronger at sea level, I decided I’d been leaning on my parents long enough and got a job on a stall at Greenmarket Square. In the winter months of July and August I only worked a couple of days a week around the rain, resting in between, but as summer approached this increased to three in September then four in October.

Almost overnight, I relapsed.

I couldn’t understand how I was so much worse than I’d been the previous November in England. My parents had just taken early retirement and came out to investigate, renting the flat next door. By Christmas I was hardly upright at all, in constant pain and in a haze of brain fog. I could barely hold a pen. My ever present sore throat made me feel like I was swallowing through knives. I couldn’t regulate my temperature and was drenched in sweat whenever I got cold. The effort of getting down the hallway to the toilet once made me retch. It became apparent this illness wasn’t going away anytime soon. Desperate times call for desperate measures. They decided to buy a house.

This was South Africa in early 1995. Far more people were emigrating than immigrating. My folks would never have had the balls to sell up and make such a risky financial move were it not for these circumstances. But I wasn’t going to get better in a UK climate so they felt they had no choice.

I maintain that no one – but no one – can truly understand what it’s like to have M.E. unless they’ve had it themselves or lived 24/7/365 with someone who has. Even then it’s still difficult to appreciate the capricious nature of it. My husband never knew me in my acute phase, or during the following year I spent mostly bedridden. He never saw me sleeping 20 hours a day. He never had to lift my head to drink. He never pushed me in a wheelchair.

I only met Sampson when I was 26, finally back on my feet and able to drive again. He knew I had to rest for a week after every night out together in those first few months; he learned to read my sudden pallor and try stop me from overdoing it; he could see the drastic consequences of me accidentally eating wheat or being exposed to chemicals. But he never had to feed or bath me like my parents did in 1994/5 when I was briefly one of the severely affected 25%. So he has no concept of what the risk of relapse truly means to me. Or could mean to all of us.

* * *

That morning, a geezer who’d been beavering away all weekend in the local allotment behind the truck came up to Sampson. He thought he was about to reprimand him for staying too long, but the gardener smiled and handed him a small crate of pomegranates which had blown down in last night’s storm. Greece really did feel like the best of Europe and Africa together – the wide availablity of good cheap food plus genuine human warmth and generosity. We sat and chowed through one each before folding up all the clothes and packing up to leave. The pomegranate juice felt like healing magic.

Windfall

Posted in 20a Europe | Tagged , , , , , , , , , , , , , , , , , , , | Leave a comment

Pantokrator

Somehow, between Montenegro and Greece, it seemed all ideas of giving Monte away to some kind people had evaporated. We crossed into the Hellenic peninsula on Sampson’s 51st birthday and I think he felt the universe had given him a puppy.

Greece at last

Gloriously verdant

and no potholes

Hooray!

The adoration…

was mutual

It was the first time in 20 years I’d been too ill to write him a birthday poem. At least I had bought him a present before we left SA: Barbarian Days – A Surfing Life by William Finnegan. It was supposed to carry him dreaming across the desert, surfing vicariously through the stories until we could make it back to the waves.

Birthday chilling

As we approached border, we were ready to brazen out the fact of Monte sat on a towel on the floor at our feet with a “found this starving puppy, on our way to the vet now”. But Greek officials were far too busy taking apart a car stuffed full of luggage driven by a chancer in aviator shades and excessive gold chains to worry about us.

Playing it by ear as usual

Sampson celebrated with pack of 12 birthday choc ices from Lidl and passed several of them on to little girls in the waiting room of vet Sophie in Ioannina who lanced and drained Monte’s swollen joint (infected from another dog’s bite) and provided worm tablets, antibiotics and special intestinal treatment dog food. Which gave him even more spectacular diarrhoea….

I fell asleep before the lights were turned off, forgot to clean my teeth even, and woke up freezing without my sleeping bag on. It was increasingly wintry. The temperature inside was not helped by Sampson getting out twice to relieve Monty. Twice he didn’t make it in time. Lucky had taken to sleeping next to me. I woke at 8, but it was so cold, I got back into bed for an hour until it was warm enough for me to venture out. There was mist on the lake outside. The boys had porridge for breakfast and I made a gluten-free version: stewed pears and raisins with ricecakes crumbled into it.

It was time to get back to the sea.

* * *

So how did I get M.E.?

I was brought up in Coventry, an industrial town in the middle of England, and sent to a fee-paying high school that for centuries had been a sausage factory to shape up the lazy-ass sons of the mercantile classes for redbrick university entrance. My parents were teachers in the state system and made huge sacrifices to give me a better education. Five of my original class of 28 got in to Oxbridge.

Girls had been accepted so recently that my first year marked the inaugural appearance of female pupils in the 6th form. They didn’t need the same kind of pressure putting on them as the majority slacker boys but no one had worked that out yet. I knew what it cost my family every day to send me there – so I never took a day off in seven years. I left school with a bristling array of qualifications, a bad habit of staying up very late to write essays and the capacity to completely ignore all symptoms of ‘flu.

Coventry in the 1980s was vying with Newcastle for the title ‘Murder Capital of Britain’. It had massive unemployment due to the closure of so many of the Midlands’ car factories that my grandfather had worked in. You know that song Ghost Town by The Specials? They were from Coventry. The city centre could be a violent and dangerous place on drunken evenings, especially for teenage girls. I had to wait for my younger brother to get tall enough to escort me before my parents would let me go out dancing to House DJs at The Dog and Trumpet on a Saturday night.

I survived the sublunary dullness of my school years thanks to a couple of inspiring and committed teachers and the opportunity to get involved in acting. I even performed Shakespeare as part of the school’s first production at the Edinburgh Festival. After a gap year working in London at a women’s magazine, I went to Oxford to read English, keen to pursue a career in theatre and writing and looking forward to getting involved in as much drama as possible.

But the drama that dominated my life there was far from the thespian type I’d been anticipating. University College is Oxford’s oldest. The year I arrived, 1988, men had been studying there for 739 years. Women undergraduates had been allowed across the hallowed portal only 9 years before and made up 30% of the student body. There was one female fellow.

My first weekend, I was asleep in my single room at the top of the building very late on a Friday night when the 2nd year lads who shared a suite nextdoor came back from the bar with a few mates. One of them was the new Beer Cellar president and had obviously been treating his pals to a few afterhours drinks. They were so rowdy they woke me up, for the first of a hundred times that year.

I phoned my boyfriend from the landline in my room to witness the level of noise – he was a jazz pianist, at work in Covent Garden – and he told me to lock myself in. When my neighbours and their guests progressed from banging on the wall to banging on my door I got concerned that the latch was pretty old and looked round for something to defend myself with. It was when I caught sight of myself in the mirror with a serrated little kitchen knife in my hand that I got angry: what the hell was I doing? How had I been reduced to this?

I only found out this was ‘Fuck a Fresher Week’ afterwards. A whole rash of incidents had taken place that weekend. What happened to me was – and still is 30 years later – entirely unremarkable. The boys were quietly reprimanded by the Junior Dean. I was treated as a trouble-maker for making such a fuss. That was week one.

In the third term of my first year, I was elected college Women’s Officer; I spent most of my second year fighting for justice for rape survivors within college and negotiating Univ’s first Code of Practice for Sexual Harassment. I was subsequently elected Oxford University Student Union Women’s Officer (the last time it wasn’t a sabbatical paid post) and in 1990 carried out the first university-wide sexual harassment questionnaire. The damning results were published in The Sunday Observer the week after Thatcher resigned.

For about 18 months I slept an average of 4-6 hours a night, and almost never the night before handing in an essay. We were set three a fortnight in our second year, on subjects such as the History Plays or the entire works of George Eliot (one of the very few women on the syllabus). Anxiety and eating disorders amongst my fellow female students were rife. I still thought I was superhuman and could cope. Sickness was something that happened to other people.

The second term of my final year I went down with glandular fever (mononucleosis) with a blood test showing evidence of Epstein Barr virus. The doctor recommended I drop out to recover properly and take my finals the following year. But I didn’t want to spend a single second longer in that place than I had to, so I carried on, pushing through my exhaustion as always.

That summer I escaped to London, eager to pay off my student debt and earn some money to take a year off to travel.

* * *

Sunday was gorgeous but my energy was drained by the first day of my period and I was not up to walking. I sat with Monte while Sampson went for swim and watched Zola bounce out the truck and back in for his goggles. I love how the sea turns the teen into a keen bean again. Zola spent the morning washing his clothes while Sampson did some serious lying down recovering from his third month in a row up all night with a needy baby.

Naps

I weighed my options up carefully and decided that, sadly, the cold wind was going to come up too soon to justify the extra effort of setting up outside, so I lay down on the bed instead. I edited till 4pm then dragged myself up to chop a pile of veg for supper. Birthday boy had no idea what the cooking cost me. Finally I had a shower while the pot simmered – I hadn’t even managed a wash that morning.

My Sunday night movie treat was half a pomegranate. I love pomegranates. There’s something so intense about the ruby redness of their jewelled seeds, the juice explodes on your tongue like distilled summer heat; it seems to give a huge vitamin C boost to my system.

There was a storm the next day, so it was wet but warmer. It was stupendously tiring to have to drag so many clothes on, but once I was strapped in to jeans, socks and walking boots I felt more capable. Zola was in a great mood and we zapped through school.

Hard at work

Preveza

In Preveza, Sampson tracked down another vet, who was willing to do the pets’ innoculations even though they were not yet 3 months old, because jabs needed to be done 3 weeks before our flights.

He came back with a collar and lead, and special expensive dog food. When I queried his assumption that we were keeping Monte, my husband said, “But we agreed”. I didn’t want to row in front of Zola but felt it was time to point out that an exhausted silence does not equal acquiescence.

* * *

In Jan 1992 I set off with a friend to volunteer in Bangladesh for a few months. I had an amazing time and travelled marvelling on through Nepal, India, Thailand, Malaysia and Indonesia. In Sumatra in July all seven of us on a trek went down with dysentery. But I was the only one who never recovered.

I pushed on through Hong Kong and across China and Russia on the Trans-Siberian Express to Prague where I ran out of money and got a job teaching English in a middle school. I was still so ill, I went to hospital and was given anti-giardia medication for a second time.

But I continued to be constantly exhausted and feverish. By December I was coming home at 4pm and falling asleep at the table. I had had diarrhoea for six months and was feeling increasingly weak. I had purple welts on my thighs and cheeks like an AIDS patient. I couldn’t speak enough Czech with doctors to find out what was wrong with me. Finally, I gave in and got a coach home to Coventry for Christmas.

It took another year to diagnose. The first round of tests – including a barium enema – found nothing wrong and I was told I just had IBS. I resolved to pull myself together, packed up and set off to Manchester in the spring to start a theatre company with my best friend from college, who’d been at drama school training as a director in my absence. It was the life we’d dreamed of, in a city full of excitement and opportunities. I felt full of optimism for the future.

But I couldn’t get out of bed in the morning. My energy, which used to be boundless, was unreliable and sometimes absent altogether. My Mancunian GP ran more tests, found I was seriously anaemic and insisted I stop being vegetarian. But even forcing down liver did not restore my capacity. I found myself crying outside the supermarket because I didn’t have the strength to walk home with 2 bags of shopping. I was 23 years old.

As winter came on, it got worse and worse. I was sleeping 12-14 hours a night. I would wake to find clumps of hair on my pillow. I had constant nausea and dizziness. Worst of all, I couldn’t think straight; I struggled to read and I couldn’t write. When I told my young GP that I had been unable to get a lump of Blu-tack/Press-stick off the wall because of the pain in my hand she took a deep breath and said, with obvious reluctance, “I think you may have M.E.”

M.E.? I’d never heard of it… Was it something really serious, like M.S.? She couldn’t tell me anything apart from the fact that this was a possible diagnosis if, after 6 months and all other tests proved negative, post-viral patients were still ill with unexplained pain and fatigue. This was Before Google, so I went to the library and found a book, written by a doctor with M.E. And there it was, a comprehensive list of symptoms laid out before me. I had every single one of them, even the ones I hadn’t realised were connected, like noise and light sensitivity. It explained that M.E. was characterised by post-exertional malaise, pain in muscles 24-48 hours after doing even light exercise. It told me that the only way to avoid it was to do half as much as you thought you were capable of. Except this was impossible, because your capacity and limitations shifted daily.

The book said that a particular type of person tended to get M.E.: those that don’t rest when they’re tired or sick but push on through. This means a disproportionate amount of sufferers are women, who often have no choice but to carry on for the sake of their children. It also said 10% of patients recover spontaneously within 2 years; those that don’t reach a plateau of symptoms between mild and moderately affected; the severely affected remaining 25% end up bed-ridden in darkened rooms.

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

I soldiered on but by November I was crippled with arthritic pain and brain fog. The only time I was warm was when I’d just stepped out of a hot bath. I couldn’t push through this time, I wasn’t able to look after myself anymore – my brother was having to interrupt his studies to come round and cook for me. For the second Christmas in a row, I gave up and went back to Coventry.

* * *

We parked off by the deserted Castle of Christ Pantokrator in Preveza. I set off slowly to explore; Zola overtook me on his unicycle.

The fortress of Pantokrator

named after the small church built on top

was constructed by Ali Pasha Tepelena in 1807

during a century of Ottoman rule over Epirus

It’s now abandoned

and covered in graffiti

Christ Pantokrator is largely an Eastern Orthodox conception of the Almighty

as mild but stern, “Christ the Teacher” – this 6th century icon from St Catherine’s Monastery, Sinai

It was cold

but very beautiful

and very quiet

Sampson was up twice in the night again with Monte and I didn’t get back to sleep in between. After dawn I dreamt that I was a small child and had two toy dogs that came to life: their teeth started snapping at my hands as I was feeding them. I woke feeling so much worse than the previous day despite my attempt to fend off the effects of the cold by sleeping in my sheepskin hoodie. Today I had second degree malaise, a horribly stiff neck, debilitating spinning nausea and pain in my arms and hands from typing yesterday. It was a huge effort to sit up, an hour to come round enough to stand, two hours to complete the process of getting up.

Nothing better than Greek Greek yoghurt for breakfast

Meanwhile Sampson went for a surf. There was hardly a wave but a good paddle miles out the back is always good for his head.

Worth a paddle

But there was a storm coming

I knew which way the wind was blowing. After he came back in and had eaten ravenously, I sat down opposite him and said,

“Look, the day we found Monte, remember I said we couldn’t possibly keep the dog as well as the cat? I have Not yet agreed to take on another (potentially huge) child! Lucky is 2 months old today and I haven’t slept through the night since she arrived. I will not be besmirched as somehow lazy for not picking up puppy poo in the small hours when I didn’t sign up for this.

You leave me no option but to spell this out: I know I physically can’t do it and I shouldn’t because keeping the dog means a significant risk of relapse for me. With temperatures as low as they are, I have no buffer as it is. This is the time I should be focussing on building up my strength ahead of the huge hurdle presented by the demanding admin tasks and physical crossing to Egypt – with the added stress of doing it all without the guaranteed safe food and rest provided in the truck. The only way I can get through this is if I can sleep enough to save up enough energy to cope with the challenges. But with you getting up every night and waking me, my insomnia is getting worse not better and I feel like I’m on a very slippery slope.”

The risk of disabling me when my skills were most needed was crazily obvious to me, but my husband seemed willfully oblivious. Never mind the expense or inconvenience of a big dog in a small space or the commitment of hours of training time ahead. He was adamant I was exaggerating, even scoffing at me, confident with Zola on his side. Our son was remembering fun times with Mia in the summer in France – they both wanted to keep Monte. I wanted to keep him too, and felt so angry to be put in the position of killjoy. There was no one else to stand up for looking after me; it would probably not even have been different if Ruby were with us, she loves animals so much.

I asked Sampson, begged him, to carefully consider the consequences of taking on another newborn when I was already in so compromised health, when we had the most challenging border crossing yet ahead of us, as well as Ruby on her way for a precious holiday.

What do you think?

Reader, he chose the dog.

Posted in 20a Europe | Tagged , , , , , , , , , , | 1 Comment

Brothership

Of all the countries on the European continent we were due to pass through, I only had misgivings about Albania. Beyond vague inferences concerning Balkan ‘baddies’ in Hollywood movies, I could find for no logical reason for this sense of unease. Albania seems to have a similar reputation in Europe as Nigeria has in Africa – undeserved shade thrown by a fistful of exported gangster heavies and underground smugglers that by no means reflects the majority of the population.

Zola pointed out to me that Voldemort had been banished to Albania: that probably explains it!

The road to the border began to look more like Africa than Europe:

The road to the border…

offered no signs, cones or danger tape…

to warn of sudden roadworks on a collapsed bridge halfway down a very steep slope

Men with shovels standing amidst the CAT vehicles, cheerfully called Big Reg over the half-repaired road. My Dad would have had a heart attack.

The slow-moving queue at the border checkpoint made us nervous, but turned out to be due to a computer malfunction. A frustrated official repeatedly scanned our passports, while a 6 foot tall Albanian policewoman in a black uniform with red piping looked on, rocking her knee high boots, full glamour make up and aviator shades. She looked like she was auditioning for Rizzoli and Isles and was prepared to kick ass at any moment. But they waved our Green Card insurance copies through, no problem.

We drove in still feeling a bit tense, but the first man driving a donkey cart we saw split his face into the widest toothless grin and waved – Sampson and I automatically both waved back, delighted. This was a different style ‘We Are Not Europe’: it was a relief to be beyond Euro norms, back in a relatively tourist-free zone where it was natural to acknowledge your fellow human beings.

To us, Albania came across…

as more friendly…

far more colourful…

and more house proud…

(they love balconies… and lime… and purple)

than Montenegro

Albanians seems to take great pride in their houses, which are often colourful, and always dripping with balconies, pot plants and trailing vines. The first mosque we saw had a Disney-esque dainty white fluted minaret, and a church right next door.

Peaceful vibes

Sampson stopped to change an oil filter, and asked for water outside a restaurant and function venue that looked like a castle. ‘Location location location’ seems not to be a principle applied in Albanian real estate investment; this enormous building deserved to be surrounded by rolling lawns if not a moat, but was slap bang next to the Rruga Nacionale. Milling young boys called a waiter called Emejdi who spoke awesome English and invited us round the back to fill up. He was almost fluent after only 5 years of lessons at school – an extraordinary achievement without ever interacting with a native speaker. I take my hat off to his teacher.

An Albanian’s home is his castle: crenellated grandeur of Vllazmia bar restaurant

l to r: Kristi Tali, Aurel Tali, Romaldo Kupa and Emejdi Lagi aged between 14-17

It was so cheering to meet a 17 year old sincerely saying “We work hard to support our parents where we can”. The four of them work there after school every day. They reminded me of my grandparents’ generation: short back and sides, work ethic and all. Emejdi taught us how to say ‘Thank you’ in Albanian – Faleminderit in case you ever need to know – and explained that Vllazmia was built by two brothers, is staffed by extended family and the word itself means (he hesitated for a moment as he sought the right translation) “Brothership”. What a gorgeous evocation of friendship and brotherhood, personified by these shy lads. Or I misunderstood and it just signifies the bros are football fans.

As we drove south, I reflected that a relatively poor Eastern European city looks very much like a relatively rich African city: the same half finished buildings, dodgy roads and lack of traffic lights. There seemed to be no town planning or zoning – residential, retail and industrial were all mixed in together. I kept seeing super modern corporate architecture, all angles and mirrored glass, next to crumbling appartment blocks or marooned like spaceships in the middle of arable land. Albania had an extra line in flourishes such as the mock mini-palace office two storey with a giant Buckingham Palace sized statue of rearing horses and a fountain.

No feed lanes resulted in occasional traffic chaos

There were also men en masse in bars drinking coffee in the middle of the day. I only saw one woman in a cafe in the whole of Albania. This was to become the norm back in North Africa, but at this point it still felt strange that half the population had just disappeared.

Apart from the ‘for sale’ signage that made Sampson snigger…

and the giant ‘EHW’ sausage adverts…

the most striking thing about Albania…

was the size of the petrol stations

These huge double volume service stations were always right next to an extraordinarily flash hotel and bar. The forecourts were generally empty. Was it a case of ‘Build it and they will come’ or some massive money-laundering loophole?

That night we pulled off at Eurostop, where friendly waiters were happy for us to sleep overnight and enjoy the free passwordless high-speed wifi. I ate the last of our tuna and sweetcorn soup and sat online late into the night scrolling through the latest in the post-Weinstein avalanche of ‘revelations’ which were not a surprise to me or anyone female. One of the reasons I got ME in the first place was the toll taken on my health fighting in vain for justice in a series of rape cases at college when I was Womens’ Officer.

Sampson was feverishly downloading podcasts – I’m not sure when I wrote the following but feel the need to include it for British readers:

* * *

I just found out via a comedy podcast that Jacob Rees-Mogg is standing for leadership of the Conservative Party. Quelle horreur. I only came across him once during my time at Oxford. It was my first week, when I went on an introductory tour of the Oxford Union – not the student union, OUSU, but the exclusive pseudo-gentlemen’s club which you had to pay an extortionate price to access. It wasn’t going to be an option for me, but as Benazir Bhutto had been a recent President, I was keen to sneak a peak at how this venerable university institution was evolving.

As we freshers filed through the foyer, Rees-Mogg was standing in the entrance hall. He was in front of a fire place, with his hands behind his back Prince Charles-style, wearing a tweed jacket and a bow tie, with his glasses and side-parting looking pompous and middle aged already. I laughed out loud and looked around to see if the others had noticed.
‘Good on ‘em!’ I thought, ‘Kudos to the Oxford Union for paying a student actor to perform the stereotype of upper class Tory twat to acknowledge how far they have moved beyond that, by inviting lower class yobs from the Midlands like me to join.’

As we were shepherded past, without comment from our guide, the dawning realisation that he wasn’t an artful parody but the genuine article was one of the many black-hole horrors I felt engulf me that first week. Another was the sentence I cut out and kept from the OUSU Handbook: “The good news is that Oxford has a thriving live music scene and a wide range of DJs and dance venues. The bad news is that every word of that is a lie.” No wonder that more often than not I was on the last coach up to real life in London every Friday night. Thanks to Sunship for keeping me vaguely sane…

* * *

I warned you these catch-up blogs were going to be random. Like my veiled awareness at the time – hazy with brief periods of shocking lucidity.

Welcome to Eurostop!

In Albania there were Euro mentions…

and EU flags everywhere…

It seemed weird that Montenegro and Albania were trying so hard to get into the EU when the UK was trying so hard to get out.

I was increasingly foggy: the slow undermining of the constant cold combined with exponential effects of longterm insomnia meant my capacity was on a slippery slope.  I kept missing photo opportunities as I was lacking quick reactions to pull my camera out in time. Holding it up for too long gave me debilitating arm ache the next day.

I will always regret not capturing the turkey herders! We saw so many but I never managed to snap in time.

As Big Reg trundled along, Sampson and I sat in the front with the puppy on a bit of old blanket on the floor between us and discussed names:

‘Stig’ seemed wrong…

‘Montenegro’ a bit too jingo-tastic for my liking…

‘Kernow’ not quite him…

Twiggy Ba(r)ker?

Sampson loved ‘Monte’ best and already he seemed like his dog.

Monte spent most evenings lying on Sampson’s chest till he got his strength up

Sampson was as patient and tender with him as a newborn…

cleaning up the wees he did on the floor and exclaiming in delight at “proper poos!”

We were lucky to find this beautiful spot…

past Fier by the river

where Daniel’s music and honey hut resides

It was the first time Monte stood up and walked

As Sampson coaxed Monte to explore, Zola and I took our French translation outside in the last of the sun at 5pm, while the cabbage was cooking and the rice fluffed in the hot box. We reflected that the cat had become ours by default.

I was so tired I slept through the mossies and Sampson wiping up Monte’s middle of night poo-on-the-floor that made him gag. It was so cold by the river, I was grateful Lucky came to snuggle on my feet.

Sampson took early pics of Albanian fishermen throwing nets like in Angola

In the morning, Daniel was bemoaning the constant tug-of-war that is Balkan politics: “Kosovo and Serbia, Macedonia and Greece, Turkey and Kurdestan – Albania, we don’t have a problem with no one”. He played me some wonderful a cappella music which he told me is one of two UNESCO protected pieces of Albanian heritage – the Balkan folk harmonies somehow reminded me both of Celtic ballads and isiXhosa throat singers. He sits here all day in his hut by the side of the river selling his CDs and listening.
“I love nature too much” said Daniel dreamily.

Sampson with Daniel Mehmetaj at Mallakastër Poem who gave us an Albanian folk CD to remember him by

We figured he must have a sideline; people on motorbikes were popping by till very late and we couldn’t imagine that their need for traditional folk songs was that urgent.

Sampson also chatted to a passing Polish couple, who were somehow managing to travel home from temporary work in Croatia without passports. This was certainly not Europe!!

Tom and Anya – hope you made it home!

We drove on through the countryside

Had to get out to take a closer look at this amazing bronze of Ali Pasha at Tepelene

looking over the western lands of the Ottoman Empire he ruled with an iron fist

More wifi and another bath for Monte at another huge Autostop

While others went about their daily business

The weedy among us rested

This was the first day Lucky and Monte started playing together.

We got to the border and found it closed! Apparently Greek customs officials were on strike. I was so glad that we were not stuck and forced to sleep in cars like others there. It was a great excuse to drive 30km back to the city of Gjirokastër, Albania’s second example of UNESCO World Heritage that Daniel had told me about.

Gjirokastër, from the old Greek for ‘Silver Town’

I left Zola doing school and Sampson walking Monte…

and set out for the fortress above…

the ‘City of Stone’

I slowly climbed up the hill thanking God we had stopped and parked below

– even cars were struggling to negotiate the steep corners in the old town

On the road up to the fortress…

there were a scattering of energetic old ladies selling crochet work and bits of filligree lace, one with amazingly long silver-grey plaits like a venerable Pippi Longstocking

From up here you could get the best look at the ancient stone houses for which Gjirokastër is famous

The fortress has been here since before the 12th century

Artillery captured by the Communist resistance against German occupation is displayed…

including Italian tanks

as well a US Air Force plane symbolising victory over the ‘imperialist’ western powers

Ali Pasha himself added the clock tower in 1812

and the extraordinary self-proclaimed King Zog expanded the prison in 1932

The National Folk Festival is held here annually

The views are stupendous

I began to understand the Albanian obsession with castles. There was a supreme feeling of safety and stability in the solidity of the stone.

The fortress gave me great perspective over the last few hundred years: like the view from the clock tower over the valley, I could take in the sweep of history from the might of the Ottoman Empire, over the Nazis and the Communist republic. The tanks in the gallery all pointed to the inevitable rise and fall of fascists and dictators. All oppression will eventually be overthrown as its excess becomes too much even for the apathetic or the brainwashed to bear. It was a comforting thought in the age of Trump and Zuma.

Hidden away towards the back of the castle…

was a sacred shrine of two Bektashi Sufi Babas from 16th and 17th centuries

Before I knew anything about the sect or their beliefs…

I was overcome with a feeling of great calm

I can’t explain the feeling that descended on me as I entered that tiny courtyard under the trees. At the time, I knew nothing about the Bektashi and their panentheism, or the widespread religious persecution in Albania under the socialist regime. An information panel on the wall told me that the Bektashis were not forbidden alcohol and women went unveiled in public. Their were no gender divisions within the tekke and no strict rules on times of prayer or fasting. Above all, Bektashism taught tolerance of different nations and religions.

The tranquility of the Babas’ tomb wasn’t just generated by the green leafy calm and the lilting birdsong echoing off the ancient stone walls; no, there was something more tangible, created by hundreds of years of prayer, offerings and reflection in this glade. Great great peace.

This was the last time I walked anywhere alone for three months.

Posted in 20a Europe | Tagged , , , , | 2 Comments