Joining the Dots… Reflections on Corona and Compassion

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

Public information poster in Monrovia in 2014

1. On Killer Viruses and Perspective

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

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

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

We didn’t come back for 7 months.

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

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

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

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

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

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

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

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

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

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

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

2. On Surviving Social Distancing and Self-Isolation.

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

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

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

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

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

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

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

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

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

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

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

A more compassionate world is possible.

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

3. A Message to Margaret

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

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

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

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

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

Zola and Margaret’s generation need to stick together.

4. GrAttitude

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

Before the first death in our country –

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

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

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

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

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

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

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

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

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

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

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

5. Top Tips for New Homeschoolers

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

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

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

Homeschooling despite distractions, Ghana 2014

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

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

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4 Responses to Joining the Dots… Reflections on Corona and Compassion

  1. Kenneth Green says:

    Hi Sam,
    Glad to read that you are all well, so to speak. There is an event in the offing that might interest you.
    It is the first from Biolab London on the subject of Mitochondria. These critters as you probably know, make energy in the body. One of the symptoms of their failure is ME. I am hoping that a podcast will be available as I don’t wish to travel to London. I personally know the founder of Biolab, and the chief scientist. I have not met Sarah Myhill, but she is well known for her dedication to the study of ME. See this link:
    Say Hi to your folks from Polly and me. Haven’t seen them for about 2 years!
    Ken Green ND

  2. says:

    Nice one.Always a pleasure reading you.And I have been doing so since coming across the green truck

  3. Norma says:

    Sam, This is Norma Read, Ashley’s mother. As always you write such good common sense, so well expressed. I’m glad you’re back home after your wonderful journey. Blessings to you and your family during this apocalyptic time in our world. Keep well. Norma

  4. Julie wright says:

    Love the idea that we’ve all been sent to our rooms to think …brilliant analogy and too right.

    Glad you’ve blogged again……and .even though it often wipes you out…..your writings do inspire and inform……Margaret indeed!!

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