Today I saw the cobra lying by the side of the path about ten metres ahead of me. Coiled up like a liquorice wheel, like a hosepipe, she was so still that for a while I thought she was dead.
I wondered if the people picnicking further along had killed her; they were drinking and there were empty quart bottles dropped carelessly in the bush heavy enough to do the job. But no, it was just that the cobra hadn’t clocked me yet. The wind was blowing so fiercely in my direction, she couldn’t smell me coming.
* * *
The first time I saw her, it was out of the corner of my eye. The end of her tail flicked up and caught the light as she disappeared into her hole. Lappies told me it was an honour. Even though Cape cobras are among the most common of South African snakes, sightings are still rare. A friend of his who has been hiking the mountains around Soetwater for 25 years has never seen one.
Even from that glimpse, I could tell she must be quite a substantial size. As cold-blooded creatures, snakes need to come out and lie in the sun to raise their body temperature enough to move about. In winter, they go into brumation or dauer state.
I empathise. My body can barely function when the temperature gauge slips below 15˚C.
* * *
We all slow down a bit as we get older. Very few people in their 50s have the va-va-voom to party all night every weekend like they used to in their 20s.
Maybe you count yourself as having half the energy you had then? But could you still pull an all-nighter for a deadline if you absolutely had to? Can you still push the boat out for a celebration every couple of months?
I estimate I now have about 1% of the energy I had before I got sick 30 years ago.
I’ve sunk to a lower level than that, but right now I can get up and get out once a day, walk 100m, breathe some fresh air.
Most of the time I lie here on the bed. I might be recovering from some great endeavour a few days ago – a trip to the clinic or the bank – or saving up energy for an online chat with a loved one. Mostly I’m recuperating from having a shower or making lunch. Those are good days. On bad days I can’t manage either of those things.
* * *
Since the flash of tail, I approach the low wall where the hole is cautiously. Cobras are mostly invisible, mostly stay underground. They’re not sociable, even with each other. If you see them out and about, they’re solar fuelled and ready to hunt.
* * *
I am so good at this now, so expert in meting out my scarce energy, that you wouldn’t have any idea how endangered my existence is. I look casual, my movements appear effortless, but it’s taken me a week of preparation and iron discipline to get to here: standing upright, washed, fed, body bolstered, compos mentis enough to interact with you.
Please make an effort to be jolly. It will take me a week of poisoned purgatory just to get back to baseline and I have to live on the memory of this for a month! Never mind the risk of killer viruses.
* * *
Wellness is a privilege you don’t realise you have until it’s gone.
* * *
Twice more I have seen her, stretched out, basking in the sun at the base of the wall. Motionless, soaking up the life-giving force. Vulnerable but still vital.
* * *
You cannot possibly appreciate the skill it takes to bring about ‘occasions’. How diligently I must pace my days, my weeks, my months. How I must ruthlessly hone my choices, weighing up the costs in pain and dysregulation versus benefits to sanity, hunting down moments of joy amidst the sapping waste of compulsory appointments.
* * *
Unlike the contemporary state of being Black or Queer, being permanently Sick isn’t associated with a defiant Pride. But I am proud of how I’m surviving my erasure. Not just the discounting of the chronic pain and the relentlessness of running on empty. But the forced re-imagining of who I am, the shedding of all the skins of me: the dancer, the walker, the talker, the reader, the promoter, the producer, the provider, the facilitator, the carnivalista, the feminista, the protester, the lover, the mother, the friend.
What is left?
* * *
When she finally noticed me, she raised her head to assess the threat. Ten metres back, I effortlessly became still. Slowly, she tasted the wind before sliding off into the dry grass.
* * *
Today I am happy. Because I was able to walk. Because the sun shone. Because the mountains allowed me complete calm. Because the glinting of a thousand wavelets on the cobalt and cyan sea gave me delight. Because I felt the leap of the massed terns wheeling in the blue.
Because despite it all, I am alive.
You have to choose to focus on what you have, not what you’ve lost. Some days it’s impossible, the grief is overwhelming. But today my gratitude is a balm. I am so lucky to have a loving family who believe me. Who support me by constantly shopping and cooking and washing up. Who allow me to lie down and save my scant supply of energy for things that make my life meaningful. Writing a few words a day.
This page has taken me a week.
* * *
Someone watching from the outside would think I do practically nothing. That I achieve nothing. But I am an energy virtuoso.
You wouldn’t even be able to lift your head.
I have learned that the stiller I lie, the more life I have access to. It is horribly counter-intuitive and has taken me decades to fully grasp the artistry. Determined rest is the only way to charge my flat batteries and not overload my dysfunctional nervous system. Peace is critical; upset is poison.
The biggest threat to my body is misunderstanding it. My venom lives inside of me. Nothing outside frightens me anymore.
* * *
Drinking homemade rooibos cappuccinos with my husband in the afternoon. Watching my quiet son’s face break bashfully into a smile.
A thousand birds, roosting on the summer rocks like snow, whirling up into the wind in a thick drift, a blizzard of terns.
* * *
Curled up here on my bed, life is still beautiful. It’s still life.
After leaving CAT, I was able to sleep on in the mornings until my chronic pain ebbed enough to be able to get out of bed more easily. In these winter temperatures, it was exponentially harder to push myself to get up at 7am instead of 9am, and doing it would make me feel disproportionately sick. When I asked Sampson, how, scientifically, this could be the case, he answered that I was like a 40 year old Mercedes 9/11 that takes a while to warm up and function properly – unlike a Ferrari body like Zola’s which immediately revs up ready to go!
On our way out of Nairobi, I was deeply sad to be just too ill to visit Mwalimu Gregg Tendwa, an inspiring multimedia artist, DJ and cultural facilitator I’d met in Cape Town in 2012. A vibrant and fascinating character, I had been looking forward to seeing him in his element at his home in Machakos (as I had Deji in Lagos and King in Bamenda). Once again, ME was depriving me of an opportunity to connect with people I care about.
As always, it felt better to be back on the road. As the altitude dropped from 1000m to 500m on our way down the busy highway towards the coast, Sampson gave me a wonderful blow-by-blow account of his UK visit with all the gossip from friends and family.
The baobabs were back, we saw meerkats and zebras by the side of the road, and it was getting warmer all the time.
That first night I felt such a sense of relief and freedom to be out of the city.
The next day, we only had 100km to go to Mombasa but Sampson was still stressing out because Ruby was due to land in less than 24 hours.
About 4pm, Big Reg arrived at Moi International airport, a surprisingly quiet spot surrounded by grassy lawns. Zola and I went for a little walk/unicycle respectively and there were dozens of tiny monkeys scampering about. Watching us from the base of huge tree nibbling on a yellow mango, one sat back on his haunches and displayed duck-egg-blue balls!
After all that driving on the hectic highway, Sampson crashed soon after Zola’s leftover curry and mash, but I decided to stay up rather than not be able to cope with being woken at 2am to leap out of bed. Amazingly Ruby got wifi on her RwandAir flight so we were chatting on WhatsApp. She was worried they’d left Cape Town half an hour late so she now had less than 30 mins to get through airport checks in Kigali and transfer to the Mombasa flight. It was nail-biting to imagine the progress of my still 16-year-old daughter from my bed. Especially as Moi International experienced power cuts twice during that time – when the whole airport went dark, I wondered would that affect the landing lights or signals from the tower?
Ruby finally arrived about 3.30am on 16th June 2018, Youth Day. She walked out pushing a trolley balancing an enormous gaffer-taped big wave board her Dad had persuaded her to bring which she’d had to run across Kigali airport with, bless her. Not a single official had asked to see her Parental Consent Affidavit, and she told us that the lights had gone out on her plane as well…! It was awesome to be all together again.
We decided to head north not south because we heard the new bypass was not yet open. It was the less larney side of Mombasa but still thick with five star hotels, where we stopped to ask for waste vegetable oil. The Duty Manager at the first one unceremoniously threw us out of the carpark at 11pm, furious that her predecessor hadn’t observed permission protocols. Whether she thought we were the security threat or the ones at risk wasn’t made clear…
Big Reg drove 100m up the road and parked instead outside the far more welcoming Maasai Resort. This late night on top of the previous one, combined with the effort of calming Sampson’s flat panic, cost me a lot of spoons. In the morning, we had to thread our way through back streets between the fancy hotels along the narrowest of public paths to get to Bamburi beach. The kids were appalled to see another huge dump of plastic waste right next to this sign:
It was reminiscent of Ghana: best front forward for the international tourists, but beware the layers of poo just behind. There was a similar amount of badgering on the beach to buy boat-trips, camel rides and trinkets. But shoo it was wonderful to be back by the sea, with a stiff cleansing breeze. The air felt tropical again at last.
Sampson got cracking with local auto man Mr Edward Ronald who took several hours to extricate both alternators to replace voltage limiters and give them a service. After Zola’s Maths exam, the kids played in the Maasai Resort pool. I think this was the last time Ruby was able to physically dominate her brother – trying to stop him as he dragged himself around the rim with crossed legs. She’s so strong but has such a high-pitched giggle; his laugh was now so deep and guttural. How they have grown and yet stayed the same!
It was wonderful to listen to my teens reconnect over a sparkly makeover. I couldn’t get off the bed to sit with them but managed to sneak these pics out of the window. When they came in to show me, their stance reminded me of an old photo which I found in the mini-album in my cupboard. They’ve been playing the same game since they were toddlers!
I was so grateful Zola cooked his special dahl that night, ‘cos I was flat out.
The next morning, Sampson and I walked half the distance along the beach because I’d overdone it the day before. I got only 20% of the hassle I’d had when alone. I spent the rest of the day lying down, talking Ruby through how to link concepts in her history essay on Rwanda, loving her enthusiasm, before photographing and emailing all of Zola’s exam scripts to FHHS.
We moved on to ask for oil at the five star Serena Beach Resort and Spa, which was beautifully designed, with a bijou villa feel in contrast to the grand blocks all around. Duty Manager Herman asked us lots of questions as we sat drinking welcome lime cordials and green coconut juice. He told us Mandla Mandela was his mate, and when he was invited to Qunu to meet Madiba in 2012, he’d taken 12 Maasai with him!
Herman showed us Serena’s famous turtle hatchery and we were delighted to discover that their once weekly turtle talk for tourists was tonight!
At 7pm we attended a fascinating presentation by conservationist David Orlando, who told us all about the common Green turtle, the more rare Olive ridley and omnivorous Hawksbill sea turtle, the latter most endangered by the destruction of the coral reef. He was an entertaining speaker – describing soft Leatherbacks, in contrast with Loggerheads, as the “saloon car version”!
Each female lays up to 100 eggs in a nest at high tide. It takes 60 days for the young to hatch but the lower the temperature, the longer the incubation period. The higher the temperature, the more females are born. This apparently is the opposite of crocodiles. Like salmon, sea turtles go back to the same beaches they were hatched upon to lay their eggs, receiving an imprint from its unique sand that acts like an inbuilt GPS. They can swim from Kenya as far as Mozambique and even South Africa over decades but they always come back.
Female sea turtles can retain sperm “like a built-in sperm bank” and lay clutches of eggs in 2 week intervals between March and June, but then don’t return for 2 or 3 years. For every 1000 hatchlings, only 1 survives to sexual maturity – that’s about one for each mother every 5 years. Unlike crocodiles, turtles provide zero parental care and the hatchlings have to run the gauntlet of mongooses, crabs and sharks to reach the sea.
David explained that providing 24 hour security to nesting female turtles on remote beaches was impossible, but the hotel works with local fishermen, offering them incentives for conservation such as chest freezers. Recent Kenyan legislation now gives turtles the same protection as rhinos and elephants – poachers risk 20 years in prison or a KSh20million fine.
Turtles are a flagship species to assess the health of the marine environment. Alongside the threat from natural predators, they are in danger from discarded nets, garbage dumped on nesting sites and sea level rise. As they feed on jellyfish, sea turtles are also very vulnerable to swallowing plastic bags; David told us that the banning of them in Kenya in 2017 had led to a 10% reduction in deaths.
Serena spends around $30 on each nest, protecting and preserving habitats and raising awareness through beach cleanups and education. Under their stewardship programme, they had nurtured over 55000 eggs and 46000 hatchlings so far. It was no surprise that alone amidst Kenyan hotels on the global stage, Serena had been awarded a Gold Eco Tourism rating since 2016.
It was so unusual to be out ‘of an evening’, let alone taking notes in a lecture; I felt a little giddy with excitement and exhaustion afterwards as we made our way through the beautifully lit grounds back to the truck.
The next morning, while we were doing our exercises in the landscaped gardens, a gaggle of journalists and cameramen arrived for a press conference. Apparently the Deputy President was in a meeting inside.
I loved these giant chess pieces modelled from over 2500 recycled flip flops by Ocean Sole. One set commemorates marine life presided over by a king and queen turtle; the other documents the life cycle of a butterfly, acknowledging Serena’s other important conservation project: the Butterfly Park, which hosts 67 of the 871 different types found in Kenya. Passionate project manager Maurice Unda has been going out in the early mornings to catch, mate and then nurture butterflies since 2002 when he began with only 6 species.
The kids took advantage of the enormous pool to play piggy-in-the-middle with their Dad, but I wasn’t strong enough to go in. When our friend Bryan Piti unexpectedly called in on his way back from visiting his aunt, Sampson and Ruby went up to the lobby to chat to him but sadly I had to stay in the truck and rest to preserve my energy for the eMzantsi AGM on Zoom that evening. I hated how my severely limited capacity was forcing me to choose between work obligations and friendship.
I finally managed a dip in the pool at the hottest time of the afternoon on the following day, just before we left, straight into traffic on the road going north. Sampson had identified a potential empty beach by a gap in the reef about 20km away. It proved difficult to identify the right dirt road and as dusk was descending, he was on the verge of giving up and going back to the main road when I insisted we persevere, determined to sleep next to a sea breeze. Finally we found the turn off, and Big Reg bounced 2km down the straight and narrow road, luckily with no low trees. As we reached the fork at the end, a glorious cobalt blue sky greeted us and I felt a thrill of promise.
Sampson ran ahead to check for firmness and came back whooping, before steering Big Reg carefully down the final 100m of sandy path and pulling into the most perfect open spot by the empty beach. By then, it was too dark to see much, and I was far too tired to get out, but the next morning (after a heavy rainstorm thrashing so hard against side of truck made it rock violently) I was delighted to wake to this:
What a place to have arrived at just in the nick of time for Zola’s 14th birthday! In my diary I called it Bliss Beach – to luck into finding it felt like a reward for getting through the trials of the last few months.
Zola’s haul of birthday presents was impressive: 4 books from Ruby, a range of Masi Massive drip she had picked up for me from our favourite local brand in Masiphumelele, headphones and a shirt Sampson brought from the UK. Zola was very chuffed with his new clothes and a chunky ring from Ruby but his face when he saw the watch his Dad had got him in UK! And that was before the pièce de résistance – a skateboard from Uncle Paul – left him completely gobsmacked. Well done team!
As per Sampson family tradition, Ruby also got presents on her brother’s birthday (especially as we weren’t going to be together for hers next month): skate shoes from Paul, 3 books, headphones, a waterproof speaker, a massive box of Maltesers and a plum hardcover suitcase. My present was five days here doing nothing but recovering now number 1 had arrived safely and number 2’s exams were finally over.
After Sampson introduced us to local spear-fishermen, muscle-laden Juma and Harold, I was so tired I had to lie down. The PEM in my arms from restarting exercises was terrible. I did manage to read a whole chapter of Romola – it felt amazing to give the effort I usually spent on homeschooling to myself. The kids took themselves for a walk as a tropical squall came over. ‘Truckulence’ felt within reach.
Once again, instead of taking the opportunity to be alone with his wife, Sampson continued to stress out, today’s panic being about transferring video to hard drives which had suddenly become urgent from nowhere. He pushed past me after I had the temerity to point out how this unnecessary angst was poisoning our hard won calm. In the shower, I tried not to sob. He tried very hard the rest of the day.
We were surprised by a visit from village elders at 9am. I wasn’t yet washed, but managed to quickly sweep the floor before welcoming the chief. After ten minutes’ standing talking while all the men sat at the table, I was so dizzy and overwhelmed I sheepishly had to ask to sit down. After they left, I had to lie on the seat until the world stopped spinning. Sampson didn’t come back to check on me, but took himself into the surf. I didn’t know whether he thought I was shamming or was just not coping with me being this weak.
After I made myself lunch, I lay down to start editing. In the heat of the day, I took this amazing picture from my bed of the glorious view out of the door, but the effort it cost me leaning up on my elbow to get it – causing my heart rate to spike – was shocking. The realisation of quite how weedy I was brought me to sudden tears. As I was apologising for being in this state, Zola was next to me and Ruby was saying “It’s fine, I didn’t want to do loads this holiday anyway, I’m really really tired and need to rest as much as you do”. She was so kind, so comforting, so everything her Dad was failing to be.
After resting the whole afternoon, at 5pm I was able to get out for a 100m walk along the beach with Zola to the overhang of volcanic rock at the end. I ended up sitting down making mini sandcastles with Adnaan 12, Bamba 10 and David 7. A young man passing stopped to chat. Recently qualified Dr Denis Chilumo studied medicine at the University of Nairobi and had come back to Kilifi County Hospital “to serve my people” – unlike local politicians whom he ruefully stated prefer “to grab rather than to serve”. Bless him. It was an honour to meet him, but I had to eat supper lying down because this extra 10 minute conversation took me past my limits.
We watched Get Out again. Sampson loved it.
On the bright side, in this warmer climate by the sea, I was no longer having hourly hot flushes like the last couple of weeks, far fewer. Mombasa’s average high in June, July and August was 27˚C (low 20˚C) compared to 22˚C (12˚C) in Nairobi, and that extra 5 degrees was easing pain as well as freeing up energy I had been using trying to stay warm. I used it to handwash my sweaty bed clothes. We gave a pile away to the local kids who would come and play in the afternoons.
Sampson did a brilliant job of editing the video footage Ruby had filmed of her friends at school for her anti-FGM PSA message. I can’t believe they managed it in one day, while Zola was working out the soundtrack song on the keyboard!
Sampson was saying that after Ruby went back to school, the truck needed to go into a garage for a service. The prospect of another couple of weeks’ exposure to fumes and noise of workmen led me to research the cost of flights to Edinburgh. While slowly going through blog photos of Alexandria, I weighed up the pros of going to visit dear friends amidst festival jollity against the cons of potential costs to health and cash that might be needed for truck or kids. At first I though I would gather myself and push through to manage it – mostly because I thought we needed the break and perspective to save our marriage. But after mulling it over for two days, in the end the stress of too many variables plus airport deadlines felt overwhelming and I resolved to just kick back and let the coast warmth heal me.
My husband was being so much kinder to me since Ruby got here. Was that due to her presence, or influence? Either way, my body very much appreciated being allowed to rest. I hadn’t cooked this whole week.
I loved this beach. The emptiness, the wind, the calm. I felt my body could reset here.
On our last morning, when the others were elsewhere, a very little boy with big eyes that I hadn’t seen before materialised next to the truck. He was on the verge of tears, couldn’t speak, and seemed in shock – symptoms of PTSD. I came down the ladder and sat down on the grass next to him. I couldn’t speak words of comfort in his language, but I repeated “it’s OK” gently and touched his hand until his breathing calmed. Looking out to sea in companionable silence, we shared my banana, mango and yoghurt breakfast.
I tried not to feel overwhelmed by how woefully inadequate this was.
This blog is dedicated to the beautiful family of Nawir Ibrahim who shine in my memory like a beacon. This was a gruelling week for me – I felt at almost the lowest ebb of the whole trip both physically and mentally – but their heartfelt hospitality carried me through.
We were late. After a long day sorting out truck tax online with the Kenya Revenue Authority then doing a plastic fantastic shop upstairs at Naivas (new bowls, plates, cups and even a sink!) while Zola was writing his EMS exam, we realised with horror that somehow we’d left PJ behind. Big Reg had to go back to KALRO in the dark and we were so relieved when five minutes after calling out and flashing our torches around in the drizzle, she came mewing up to us complaining at such neglectful treatment!
So by the time we arrived at Nawir’s house at 10pm I was flat out on the bed, energy reserves entirely depleted, completely unable to go in. I felt I was being inexcusably rude – the family had waited up for us, and his sons were hovering outside hoping for a chat – but that would have finished me.
In the morning, Big Reg followed Nawir to his office at CAT: the Centre for Alternative Technologies. Nawir has been in the renewable energy business since 1996 and CAT installs solar energy systems in lodges, farms, offices and hospitals across East Africa. His expert team were ready to install a set of massive new solar batteries provided by Dutch company Victron Energy (suppliers of solar energy products worldwide) as well as a MultiPlus II, which they’d just launched. It’s a powerful new product which works as a 3KW inverter and solar charger while also allowing 50 amp charging from the grid, an unprecedentedly swift bonus.
Victron’s batteries were much bigger and much heavier than our originals, so the weight had to be redistributed across two storage cupboards instead of one. This took an extra day and required a hasty re-imagining of interior space. On the bright side, it finally forced Sampson to clear out ‘under the table’; but the dust and upheaval it entailed was a lot to cope with top of the unrelenting cold and lack of privacy as a team of men clambered over the truck for a week with the winter wind blowing through all the open doors and hatches.
We took shelter inside the CAT office. While Zola was writing his English exam, I was making notes for the first east side blog on Egypt. Nawir introduced us to his daughter Dalila, 23, who had just finished her degree in International Development at the University of Sussex in Brighton. She’d only got back from the UK 3 days ago, but she was already working alongside her Dad.
Then her mum arrived: Wow. Umkulthoom Saleh, known as Umi, is tiny but her impact is huge. She radiates light, positivity and joy in the same way her Egyptian namesake shone brighter than any star across the Arab world. She was so luminously genuine, I loved her immediately – and that was before she knocked me out knowing about ME! She has a friend with an autoimmune condition also suffering in their bedroom. To be immediately believed and affirmed I realised had never happened to me before; I was so dazed, I nearly cried.
At 5ish Nawir locked up the office and insisted Zola and I came home with them, saying his wife had cooked especially. Sampson had just swept up an entire bagful of dirt from under the table, but the contents of the storage lockers were still spread out all over the floor, and going to take another couple of hours to pack away, so I was relieved to accept.
Umi was fulsome in greeting and asked her son Ibrahim show us around their comfortable bungalow, a former farm manager’s house, all bay windows and wooden beams. It was strangely reminiscent of the old Victorian house I was brought up in during the 70s, Enid Blyton books and all. During the course of the evening, Umi was moved to tears several times due to our experiences echoing each other’s – firstly when she found out our birthdays were on the same day, although she is 3 years my senior.
She also homeschooled her kids: Musaab (20) was now doing his A levels, while Ibrahim (15) was due to do his O levels next year. Umi told me she was convinced she was experiencing menopause when, 10 years after Ibrahim had been born, she became pregnant at the age of 45! Amara Muneera was now nearly 6. “She had to have a companion” said Umi, so along came Najat, who is 4. I played “horsey horsey” and “I draw a snake upon your back” with the littl’uns and they were so lovely, it made me wistful that my kids were way past such simple pleasures.
That night, Umi served us superb food, as fine as any five star hotel restaurant we have eaten at en route: chili bites with chick pea flour and tamarind sauce, cauliflower pepper soup, coconut chicken, grated beetroot, rice with broccoli. It was so warming and nourishing, I felt bolstered despite my deep exhaustion. On top of that, she sent us home with all our towels washed and dried, and hot clean sheets. What a joy. After we were dropped off by Nawir, Zola ate another handful of the chili bites that had been pressed on us while telling his Dad all about our evening. I couldn’t remember when I last saw him so delighted.
In the meantime, after hearing how cold we were, Bryan Piti had come round to see Sampson bearing bags of groceries and two huge blankets – what a lifesaver! The next day, Saturday 9th June, I used them to make a bed in the CAT office and lay there writing a proposal for Africa Clockwise and Zijani to the Kenya Climate Innovation Centre.
CAT experts Mr Alex Wango, Stephen ‘Dofu’ Mwambire and Solomon Ochieng were busy wrestling with the installation of two extra solar panels as well as Victron’s fantastic Multiplus II and its colour monitor touch screen.
In the afternoon, Sampson performed the Africa Clockwise show for the CAT staff in their conference room and was gratified to have Mr Solomon gasp at his tricks, although he couldn’t teach this group anything about alternative energy that they didn’t know already!
Zola, in a break between exams, was entertaining himself with a new challenge: climbing a ladder while on a unicycle. I finally persuaded him to let go of his old faithful plastic slides from Liberia; he really can’t be accused of being addicted to fast fashion!
After this long day, we were all taken back for supper. Umi had lovingly produced another incredible spread: a huge plateful of freshly cooked triangular khameer, a bowl of gluten-free potato and onion bhajis for me, the most scrumptious fried fish in cumin. She must have been busy for hours. Dalila sat on the floor feeding the little girls, telling us hilarious stories. She’s a great mimic, with anecdotes for Africa. I told her she should be a comedian!
After Umi spent a while expressing her great love for overland exploring, we were suddenly struck with the idea that she should write a Guide for Muslim Travellers to African cities. She would be the ideal person to address this gap in the market! I felt so blessed to sit around and chat in the bosom of this wonderful family, while Sampson did a mini magic show for the little sweethearts. I’m sad I didn’t get a pic of gentle Ibrahim, but like Zola, he does not seek the limelight.
Dear Nawir dropped us home very late. Ibrahim had said he would pick Zola up at 9am next morning to go to and see Deadpool 2 at the cinema and Zola was so anxious not to miss him he was up at 6am and sat outside for an hour and a half!
I was hoping Sampson and I could take advantage of this rare Sunday afternoon alone to spend some quality time together. Instead we ended up having a row so terrible I described it in my diary as ‘relationship-ending’.
When my husband disappeared over to the office to download podcasts on the wifi while stretching, I told myself not to dwell on wasted opportunities and go with the flow. But when he came back at 1.30pm and told me he was going to lie down for the rest of the day because he had a cold – with no thought of preparing food or needing a table to chop on or indeed anything for anyone else – it all came tumbling down. I knew he was stressed about getting back on the road to be on time to collect Ruby, but the gulf in his understanding of just how ill and incapable I was had become overwhelming.
I was aware I couldn’t think clearly, was battling to hold a thread in my head. Too tired, too hurt, too overwrought, in response to his shouting I ended up screaming, then begging. When, an hour later, I was in bits on the bed and he suddenly said “Maybe you’re right”, there was no comfort in it. I didn’t ever want a day like this again. I couldn’t cope with anymore. I was so completely knocked out by upset that I couldn’t eat but fell dead asleep for an hour, shattered.
I had been looking forward to a quiet day writing. But I had wasted a day of rest, and put myself through a pointlessly exhausting ordeal. I was beyond grateful that Umi sent a parcel of mutton and chick pea curry back with Zola, because when Sampson finally started frying an onion for supper, the gas had gone. She has no idea how vital that sustenance was that terrible night when I felt driven half mad by grief and despair.
Desperately drained, I only survived the next day thanks to moringa. While Mr Alex and his team moved batteries into the wardrobe, I supervised Zola’s Maths exam in the office. Bryan and the Zijani team delivered 320L biodiesel, and hoisted it up under the brand new solar panel. Sampson was so happy to be stocked up – this stash should see us home.
We were so blessed to find such incredible supporters here in Kenya. Victron took our solar capacity to the next level, but it was thanks to the ministrations of Nawir Ibrahim and the Centre for Alternative Techonologies team, and Bryan Piti and Ziljani that we made it into the last quarter of the journey.
Both of us were appalled by what had happened on Sunday, and were trying hard to be better. At supper, Sampson said that today he realised he has always felt that physical truck repair stuff is ‘not his thing’ – that someone else more practical should rather be doing it, like his Dad or his brother. He’d been slightly resentful of me as a result, but suddenly saw that was unreasonable. I had also been reflecting on his fragile mental state and realised I can’t be thinking I’m the only one with major health challenges to contend with. Our mutual apology – or at least acknowledgement – brought us a step closer.
On Tuesday, in the middle of the night I woke feeling very poisoned, though I couldn’t tell by what. I felt so confused: it must have been some industrial toxin in the air just released because I was gasping and had pain in my chest. I felt so nauseous I got on my hands and knees, but could not get out of bed. My husband kindly got up to get me a drink of water and open all the windows. It was frightening because I didn’t know why it was happening – but thankfully it had abated by morning. But the next day, while Zola did his science exam in the office, I was also struggling to avoid paint fumes in the yard.
Through Wednesday night, I had huge hot flushes every hour which left me like a limp rag. At 6.40 I woke in absolute hell. The pain was like I’d been beaten everywhere. I knew Sampson wanted the guys to start work at 7.30 so we could be on the road before lunchtime, but I could not surface. I felt 90 years old, and only managed to crawl out at 8am. I did T’ai Chi excruciatingly slowly, so embarrassed still to be there in the way. But as Steven finished off the final wooden shelving and Zola started his final French revision exam, Umi appeared, full of joy. She clasped my hands, delighted that due to our ‘inspiring’ example, Nawir had agreed to travel overland to Sudan for their next holiday!
I found their love story far more inspiring. Over a cup of rooibos, Umi shared that her parents were apparently not keen on Nawir initially because he was not Yemeni Arab like her family. “Islam kept us together” she said, simply. Nawir’s grandfather was from the Comores, but his grandmother Dorothy Patterson was South African, a mixed race daughter of a ship’s chandler who had two children with a Dutch ship’s chef. They left SA because of apartheid legislation while Nawir’s father was still in the womb. When the chef died, Nawir’s father was born in Zanzibar and she became a single mother in Dar es Salaam. Nawir still has relatives in Simon’s Town and had recently bought a holiday home in Port Elizabeth, where they love to escape to.
I was fascinated by the rich tapestry of intertwined family histories along the east African coast that Umi was weaving for me and longed to hear more, but it was definitely time for us to leave them in peace. But I will never forget her generosity of spirit – how she selflessly devoted herself to providing sustenance to all of us, Umm to everyone: family, staff and visitors. She had no idea how depleted I was, or how grateful for her example of commitment to happiness.
As Big Reg pulled out of Nairobi around 2pm, PJ was getting herself in a right old state. It seemed like she had forgotten what it was like to drive for any length of time, and was mewling in anguish. It was very upsetting, because her crying was reminding us of Lucky’s painful end in Khartoum. I stroked her and sang to her for so long, I fell asleep sitting up in the passenger seat with her draped on my arm.
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I had a different plan for this blog. But that was before.
Before NICE (the UK’s National Institute for Health and Care Excellence) folded to pressure from Very Important Psychologists at the Royal Colleges on 17th August and halted publication of their new treatment guidelines for ME/CFS, at the legal end of a three year process, literally at the eleventh hour.
Before, I finally made it to Barcelona in mid-September for brain and spine scans I’ve been needing since 2018 that are impossible to obtain in South Africa.
Before I knew for sure.
‘Pause’ has taken on a whole new meaning since then.
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To set the scene, let’s refresh our memory of the history of ME since the 1950s by means of Professor Brian Hughes‘ seminal TikTok, which sums it up far more succinctly than I did:
30 years ago I got sick with glandular fever. I never got over it. ‘Post-viral fatigue syndrome’ sounds mild, doesn’t it? It doesn’t encompass the life-wrecking balls-up that is Post Exertional Malaise.
30 years ago, ‘psychologicalisation’ of chronic illness was at the peak of its power. My GP was reluctant to give me a diagnosis; after 6 months of 20-something me turning up with exhaustion and diarrhoea and anaemia and nausea and bloating and arthritic pain and spasms and sore throat and light sensitivity and hair-falling-out-in-clumps, the words ‘Myalgic Encephalomyelitis’ seemed dragged from her against her will.
30 years ago, there was no internet to share our stories, our survival strategies, the history of our disease. But now, with the biomedical research evidence overwhelming, the arguments for Graded Exercise Therapy and Cognitive Behavioural Therapy thoroughly discredited and Long Covid numbers rocketing, it’s only the Very Important Psychologists who continue to suffer from ‘false illness beliefs’: that is, their false beliefs that post-viral illness is not cripplingly real.
* * *
Let us pause for a moment to consider the impact of the psychosocial paradigm in the intervening years.
The dehumanising treatment that Sophia Mirza was subjected to before her early death in 2005 (that I wrote about in Sick Consciousness part 1) is far from unusual. Katrina Hansen, a young Danish woman featured in the ME documentary Unrest, was hospitalised against her will for three years from 2013. At the end of 2020, another international campaign had to be launched to draw attention to the plight of Holger Klintenberg, a 35-year-old Swede ill since the age of 19, who was under threat of being forced into institutionalised psychiatric care.
In the 1980s, Ean Proctor, a British boy whose ME became so severe that he was mute and immobile at the age of 12, was taken from his home and put in a psychiatric hospital for nearly 6 months. His mother said “They thought we were making him ill. Ean was in a wheelchair, he couldn’t speak, his hands were in tight fists. He was all skin and bones—he looked like something out of Belsen. How could he do anything?” According to an interview with Ean conducted by Dr Anne Macintyre for a Channel 4 documentary in 1993 (from 19.00), he was subject to inhumane treatments including being left to soil himself and to sink in a swimming pool to try and snap him out of his ‘psychological illness’.
Yet it’s often the parents of sick children who are being accused of child abuse, not the consultant psychologists. Jane Colby of the Tymes Trust, who has been monitoring children with ME in UK since the 1990s, said in 2019 that the number of families who have been investigated had reached 232, with over a hundred cases alone since 2014.
Please watch this short video of Dionne Joseph from last year, describing her battle to keep her severely ill teenage daughter Jehan ‘Gigi’ Joseph-Garrison from being forcibly removed to a psych ward and made to engage in harmful exercise therapy, despite Dionne being an experienced clinical psychologist herself.
Please be witness to the picture of Gigi in hospital aged 18 weighing 36kg included with her permission in this article.
The Pause tattoo I got back in August looked a bit rough around the edges – like the guy who did it. While I was checking out his biker’s beard, faded tats and silvered teeth, he was looking askance at my shades and ear defenders. He must have thought I was a right wimp. But when he got going with his needle gun, I started laughing softly – why had I ever worried the process might be too much for me? This wasn’t even 0.25 out of 10 on my pain gauge!
The chronically SICK are living on a different scale of suffering to the Well. The Well can’t even begin to imagine the scope of ours.
The Society for the Inclusion of Chronic Knowledge has a lot to share with the world.
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A month ago, my daughter escorted me in my wheelchair from my folks’ place in Malaga on the plane to Barcelona to see one of only 4 specialists in the world in Cranical Cervical Instability (the other 3 are in the US). Due to the pandemic, I had been waiting 2 years to get to Spain from South Africa to have these very expensive upright and supine brain and spine scans.
I was diagnosed with vertical Atlantoaxial Instability, between the C1 and C2 vertebrae. The scans also clearly showed that my ‘loose’ spine is compressing my dominant jugular vein. As a result, deoxygenated blood and cerebral spinal fluid are not being drained from my brain, effectively drowning it in its own shit!
It precisely explains the increased feeling of brain fog I’ve had since my second concussion en route Africa Clockwise in 2018, as if my head was being held underwater.
In recent years, CCI/AAI has been shown to be affecting an increasing number of ME patients. For a significant number of us, it seems ME is a relapsing/remitting progressive disease like MS, with a post-viral collagen breakdown causing blood oxygen starvation to our muscles and brain, hobbling our cellular energy metabolism. For me, after three decades, the severely disabling neurological, endocrine, dysautonomic and gastro effects of this are being compounded by the fact that ligaments all over my body are collapsing; in the last few years I’ve had problems with my hips and ankles as well as my neck. The surgeon believes I also have the connective tissue disease EDS as the MRI also revealed a Tarlov cyst at the base of my spine.
My personal theory is that the overlapping chronic illness cluster of ME, Fibromyalgia, EDS, POTS, MCAS and other co-morbidities may all end up under the umbrella of one wide-ranging diagnosis (like ‘cancer’) once adequate research is undertaken. The escalating prevalence of Long Covid – a very similar debilitating post-viral condition – may be the thing that finally unlocks the necessary funding and focus.
It was life-changing to get a physiological validation of my symptoms after all these years. Not least because since wearing the recommended rigid cervical collar (that lifts my head and allows my jugular to drain) my PEM has subsided so considerably that my capacity has been boosted by almost 50%. I can now walk more than 200m without having to stop and lie down, and stand up long enough to cook. My brain can breathe. I can think. I can articulate my incandescent anger.
Anger on behalf of millions of people languishing in completely avoidable purgatory because of the hubris of a handful of arrogant men. Without their bullying interventions dominating the field and diverting decades of research, we could have had medication to manage this disease by now, maybe something as simple as insulin for diabetes.
* * *
My life has been on Pause for long enough. NICE has no right to pause these guidelines and extend the suffering of people with ME. To allow more innocents to exercise their way into wheelchairs.
* * *
My Pause tattoo is a bit skew, like a door stamp for a nightclub, hastily stamped inside your wrist as you shuffle in on a sweaty Friday night. It makes me think of all the youngsters who queued up in lines outside clubs cross Britain all through the summer, jam-packed against each other, not knowing which of them was going to be randomly selected for completely avoidable permanent sickness, thanks to their callously negligent government.
Boris Johnson has been playing Russian roulette with Gen Z – letting the Delta variant of the virus run amok among them, gambling on herd immunity ahead of winter. He’s knowingly condemned at least 10% of young COVID-19 victims to long-term disability, and potentially 25% of that Long Covid cohort to Severe ME.
The poorly inked tattoo brings to my mind the carelessly carved identification numbers on the left forearms of Auschwitz camp survivors. They had no agency when fate marked them out for cruel and brutal treatment.
A couple of years ago, there was controversy over whether the empty shoes of ME Action’s Millions Missing protests showed gross insensitivity to Holocaust survivors and their families, triggering memories of Nazi gas chambers, drawing inappropriate parallels. Of course this is not genocide; chronically sick people are not being deliberately rounded up and killed.
But who are we to judge? Surely only the Very Severe themselves are qualified to quantify their suffering in comparison to such heinous persecution? Are there fates worse than death?
Have people with ME not been vilified to the point of dehumanisation? Are they not victims of a hate crime, a big lie proposed by the psychiatrists who commandeered the field in 1970 and maintained by well-funded propaganda ever since? Are not the most severe, the most vulnerable 25% – many youth and children – being treated the most cruelly? Even, as Dionne Joseph described, “almost tortured” by being made to do exercise in hospital?
Are they not being deliberately disappeared into the category of ‘Medically Unexplained Symptoms’ while basic research funding is denied and the world looks another way? Until people with ME and Long Covid are counted in official statistics, their suffering won’t count either.
There are millions way too ill to sit up or speak, let alone stand up and protest. The Well can’t see the Sick in our darkened rooms. We are beneath your radar, and half the time brain fog makes us barely conscious of ourselves.
It is time to reframe severe chronic illness as a human rights issue. As prisoners of sub-conscience, condemned to solitary confinement without any prospect of parole, we must appeal to Amnesty International to challenge government and medical industry abuse of people living in post-viral purgatory.
The Kenya Agricultural & Livestock Research Organisation KALRO was a haven for the Big Green Truck in Nairobi. Sampson had made the contact when he brought the house down presenting at a science education conference at the Unizulu Science Centre in KZN. KALRO do groundbreaking work – there was a hive of people busy in labs and greenhouses all over the National Agricultural Research Laboratories campus – but it was lovely and quiet, with clean green air; the perfect spot for Zola and I to hang out while Sampson travelled to the UK for his brother’s wedding.
I was feeling the return to altitude – Nairobi is 1795m above sea level, 500m less than Addis but still high enough to have me labouring to breathe. I woke that first morning with my heart racing, feeling rattled by the after effects of the hectic journey and shivering as it was 20˚C and raining.
Like Cape Town, July and August are Nairobi’s coldest months. I felt cheated of the milder climate of the plains we’d hurtled across in between the capitals and wished we could go straight to the coast. Combined with still feeling knocked out by our second lot of typhoid meds in 2 months, I was scared that I might struggle to cope 2-3 weeks alone here.
On the bright side, the people at KALRO were just lovely. Director of the Children’s Science Centre, Kenneth Monjero Igadwa, had just driven from Kenya across Tanzania and Burundi to Uganda and back on a 6000km 2 week round trip agricultural mission and was exhausted (and going down with malaria) so we were greeted by his vivacious assistant Janet Kariuki, gorgeous in her sparkly scarf. Purity Muli (pictured below between Daniel Ndungu and Caleb Mwangi) doing her Masters in natural pesticides, was also assigned to keep an eye on us.
Before stressed Sampson flew out the following day, I made him a rice omelette to keep him going on the coach to Plymouth and tried to cut his hair into something a bit more respectable. It ended up rather New Romantic, reminiscent of Martin Fry circa 1982. “That’s the look, that’s the look” (I don’t remember seeing this ABC video at the time but blimey how much is going on here??)
It was SO calm after he’d gone. Zola and I enjoyed chicken soup and The Crown, reassuringly sedate and dull and delightful. I was hoping that being still for a while and ceasing the typhoid meds would alleviate the hot flushes I was now having all night and all through the day.
Each morning, Zola and I would walk around the campus, in a loop around gorgeous green fields of crop experiments, before knuckling down to school, determined to finish the term before Ruby arrived. We were also entertained by the monkeys scampering all around.
I adapted to single parenthood by cooking a huge supper pot once every three days e.g. a giant butternut, carrot, lentil and ginger soup – with Zola’s chopping help. We were getting into a nice rhythm, rewarding days of hard work with his keyboard playing or an episode of The Crown with us two cosy on the bed and the cat on my tummy. PJ was being uncharacteristically needy, coming to sit on my head early every morning before snuggling down inside my sleeping bag for an extra doze. She was also puking so often we were beginning to wonder if she was pregnant.
The peace was bombed when Ruby called me sobbing, completely overwhelmed by the Grade 11 workload at Wynberg Girls, which had her studying till midnight every evening while an old primary school friend of hers was homeschooling only 4 hours per day. I said if she wanted to drop out and complete her Matric that way I would be behind her 100%. I meant it, but also suspected that, without opposition, she would choose to push through. She’d come too far to drop out now. But the guilt and worry from not being nearer to comfort her was eating at me.
At 3am I woke with an appalling headache from severe brain inflammation (like when we were in Martigues in France). I couldn’t work out why; there had to be some midnight dumping of chemical fumes I couldn’t smell going on. I was worried how Zola would cope if I were to have some sort of episode as a result. However he was proving pretty adept at managing most things in the absence of his Dad, changing the gas bottle for us and filling up the water tanks.
Kenyans are far less likely than Nigerians to barge in without an invite, but slowly but surely, visitors began to arrive at the truck. We welcomed KALRO receptionist Sophia Munene (top right below), with her niece, engineer Abigail Njoki from Mombasa, who works in construction. Abigail had already built a mall, and was now working on apartments. She advised us to head to the north coast for parties, and the south for quiet.
The next day a whole host of students piled in. I ended up getting completely carried away by their enthusiasm and talked way too much but who could resist sunny Hilda in her bright pink jacket (in group pic below), as well as purple girls Nancy Kalee and Stacey Obatsa (below left)?
I was so honoured when Langat Kibet Emmanuel (above right, between Sophie Pauline and Mary Ndeto) told me I’d changed his mind: he was not now going to go to US after all but stay and invest his brain in the future of Africa where it would be more appreciated. The exchanges with these super bright sparks resulted in the Africa(‘s not had its) Day blog.
Janet kindly offered to take me to the supermarket. Sampson had been doing the shopping since my sharp decline in Egypt so I was glad of her company. I thought we were popping across the highway but she said it was “cheaper down the road” – a matatu taxi ride away. Naivas was indeed cheap, and the first place I’d seen ricecakes on sale since SA, but it was also huge, packed and sensorily overwhelming. By the time I got to the till, every cell in my body was screaming at me.
Janet caught a different taxi home so I was alone in the matatu on the way back. As I tried to get out, one of my big heavy grocery bags swang across my lap and tipped me off balance. In slow motion, I missed the step and fell straight out of the taxi onto the curb. My elbow and knees were badly grazed and bruised, and a litre pot of yoghurt smashed, but I was lucky it was not a lot worse.
After that, Zola and I walked to the supermarket at the ABC mall. It was more expensive but less energy-consuming.
As the frequency of my hot flushes increased from every 2 hours to hourly, I decided this menopause was definitely not peri- anymore. Even though it was so peaceful here, I was struggling to sleep, waking up gasping every couple of hours. It had to be the altitude putting my body under pressure. My period did not arrive.
On Sunday 27th May, while Sampson was having a whale of a time at Paul and Fran’s wedding, Zola and I were invited to visit Dr Ken, now recovered from his bout of malaria. He said he was “sending someone to pick you up” so I was naively expecting a car and was surprised when Caleb and Neil Omwera arrived to escort us on the matatu. During the subsequent 500m walk to his house, I was getting a bit desperate. Thank God I hadn’t walked this morning as I was using up spoons at a terrifying rate.
Dr Ken is a very humble guy, considering his immense achievements. Born in a rural village in western Kenya, his academic capacity and diligent commitment to study has led him all over the world, from South Africa and Australia to the US, Canada and Japan. His main research focus is in the application of biotechnology for food security. But his passion for communicating a love of science to youngsters drew him to found the Science Centre Kenya, as well as his latest pandemic project the Fun and Education Global Network fostering peer learning and Agri-COVID food gardens. Read more about Dr Fun’s wonderful lifestory here.
We sat in his modest house with his lovely wife Triza and sweetheart daughters Grace, Love and Peace (whom I am delighted to discover have since welcomed a baby brother David) and I felt so honoured to be received into their home. Triza’s gracious and steady aura reminded me of Zola, and she pressed a plate of delicious banana/potato mash with beef sauce on him (while I munched my gluten-free padkos).
An hour later, her three darling little Red Riding Hoods escorted us back to the matatu stop, and dear Caleb walked us all the way home. On the taxi, Gregory Isaacs’ Night Nurse was booming over the system as a blue neon light flashed – very disco bus vibes. I felt elated to have survived the outing but was absolutely shattered and ravenous. When we got in, I improvised ‘pan jam tarts’ – fried biscuits with peanut butter and honey.
On Monday morning, Zola took 4 hours to do Maths. I was lying down trying to load a blog when I heard him sniggering. I stood up and caught him red-handed, headphones on, watching Misfits on Sampson’s laptop which had been charging on the table! Ruby advised me to let it be – her exams had started, and she reckoned we shouldn’t sweat the small stuff.
I did my washing all by myself for the first time in 6 months. Me squatting by the tap, scrubbing away while listening to the BBC World Service, caused a sensation in passers by. Kenyans are unfailingly polite but there were murmurs, greetings and enquiries. Best of all was an unexpected conversation with Ken’s colleague, Mr Alex Kuria, on the Art of Handwashing, as we both appreciated the expert strategic planning shown by generations of African women to get it all dry.
There was no TV for sneaky teen that night, but next morning, on our walk to buy bread from the campus shop, Zola and I talked about building trust and breaking it and how easy it was to conform to most women’s poor estimation of men’s trustworthiness. After that redrawing of boundaries, boyo was on his best behaviour all day.
Purity surprised us, arriving unannounced with 60 primary school kids from the Emerald School. I gave them a 5 minute chat about the trip outside while Zola quickly tidied up and then welcomed them in for the truck tour, 8 at a time. They were very clever and cute but I crashed afterwards, and had to lie down the rest of the day. For the second time this week, I was forced to acknowledge I need to tell people about how ME affects me because another spontaneous visit could be catastrophic for my careful pacing schedule.
Meanwhile Zola was ploughing through his revision notes and doing his washing. I shaved his hair for him. While cooking a big green veg mix for our supper, we had a lovely chat about how great a partner he is going to be because he listens and asks questions and smiles. I ended up detailing my attraction to his Dad, the history of our relationship, how we came to adopt and how scrumptious Zola was as a baby. It was such a special hour together. What a blessing he has been in my life, today and always.
I’d bought lamb chops for his Friday Night Treats. This first red meat in recent memory felt so weird in my mouth I haven’t eaten them since. We watched Get Out which was brilliant on every level.
That night, in Whatsapp texts to my husband, I admitted I was dreading his return, worried that his unthinking chaos would destroy the steady peace and calm our son and I had established. I hadn’t cried once since he left.
I wanted to focus on writing and getting well enough to welcome Ruby so I wasn’t overly keen to fritter energy meeting a guy with a waste vegetable oil recycling business whom Sampson had been chatting with online – but what a treasure Bryan Piti from Zijani turned out to be! Our three hour chat was exhausting but he was so inspired and inspiring.
Bryan’s story was fascinating: a chance remark made by a lecturer in the middle of a boring Friday afternoon presentation “you can make biodiesel from cooking oil” changed his life. Aged 22, while still at university, he started the Biogen Diesel Kenya research project as a side hustle. Two years later he left to go commercial and started his company Zijani.
After being retrenched from an IT company, he sank all his savings into equipment needed to recycle WVO into biodiesel. Business was building slowly when he got a call at church to say his building was on fire. A second blow followed when his childhood best friend William died in a car accident; he had vowed to start a matatu business run on biofuel called BioBUs.
His elder brother then decided to invest 1.4 million Kenyan shillings (R175 000) in the business, with which Bryan was able to buy cut-price equipment from a enterprise that had failed. The money left provided for his employees’ pay, plus Ks20 for his matatu fare, but he had to walk the rest of the way.
His luck changed when he entered the Total Startupper competition and was chosen in the top 10 entrepreneurs of 3000 applicants. He also obtained free premises from a Catholic Father for a year – he pays his rent in liquid soap, as glycerin is one of the byproducts of the recycling process with which he adds value to his hotel clients. He also won a contract to service all 47 restaurants of the Java House chain and transform their waste cooking oil into fuel. So now he drives to work!
Bryan’s energy was like a whirlwind. His hilarious and heartwarming tales were topped by the revelation his mother was a tyrannical chemistry and maths teacher, who used to set her 4 kids exam papers in the school holidays! He knew his periodic table before he went to high school. No wonder he was so hardworking and committed to success! See him being interviewed on KTN News.
On Tuesday 5th June, the day Sampson set off to London for his return flight, I got up at 5am in his place to support Bryan at a Total Startupper breakfast meeting with fellow entrepreneurs and business mentors at the Nairobi Intercontinental Hotel. Getting up and out at that time on a chilly morning nearly killed me, let alone stringing sentences together as part of his presentation, but he fully deserved our vote of confidence.
I returned in the late morning thoroughly depleted and took a sudden dive just before eating the lunch I’d prepared yesterday. Zola asked me something about the foodbox and I realised I couldn’t recall what that word meant. I suspect what happens to the brains of people with ME when they run way too low on energy is akin to Alzheimer’s.
Sampson brought vile British weather back with him: it was raining and cold for his show at KALRO on Wed 6th June. In a violently stripey shirt and flash red and white trainers purloined from his best mate, Sampson delivered the Africa Clockwise multi-media show to a mixed crowd of staff and students. With top academics as Mr Dominic in the audience, he got great questions about everything from plastics to worm farms.
In addition, Deputy Director Willis shared some shocking info about the urgent need to recycle used cooking oil and take it out of the food chain in Kenya, because second hand use of WVO by street vendors was causing a huge increase in stomach cancer. Apparently this was about to go into law because smuggling WVO had become rife; a massive load from Ethiopia had recently been stopped at the border.
Back at the truck, we spent a couple of fun hours unpacking goodies from Sampson’s extra suitcase: 5 bottles of conditioner for me, 20 bars of chocolate for himself, loads of books and 3 pairs of shoes for Zola (not a moment too soon if you check the state of his current footwear). Zola was thrilled by sneaker donations from Joss and Paul; smart second hand were like new for him at this point.
To top off the treats, Sophia from reception delivered a parcel of fresh chapattis and a maize/beans/mash mix which was a perfect addition to our veg. They were all so kind at KALRO. Sampson would love to come back to Kenya post-pandemic and do the schools tour with Ken and his team that we didn’t succeed in getting sponsorship for in 2018.
I won’t dwell here on how sad I was not to be able to attend such a joyful family occasion as Paul and Fran’s wedding; it’s part of a grief about missing out on closeness with brothers, soul sisters, cousins, uncles and aunts that I long ago bound up tight in my heart. But I hope the happy couple won’t mind me sharing some glorious pics of their special day in May and understand that if I was struggling to travel to the next suburb in a matatu, that attempting a longhaul journey was way beyond me at that point. May they continue to be blessed with such sunshine and laughter!
To mark Severe ME Awareness Day 2021, 30 years after I first fell victim to post-viral ‘fatigue’, and 3 years since I first vowed to do it, I finally got strong enough to get a Pause tattoo.
In my August 2018 blog ME Too, or Why I Am No Longer NOT Talking To Doctors About Chronic Illness, I wrote about being inspired by the semi-colon tattoo of mental illness survivors, who use it to remind themselves that they could have chosen to end their life but didn’t; the pause sign (II) on the other hand reminds me of the millions missing whose lives are permanently on hold due to InvisibilisedIllness. It signifies my solidarity with them, my Sick pride, and why I have to hold on.
My double-fingered salute (II) is not only to show solidarity with all InvisibilisedIllnesses but also to recognise the burden of Intersectional Illness: the awareness of layers of oppression suffered by those labouring under a multitude of diagnoses, marginalised identities or both.
It is time to stop waiting for doctors to restore our dignity; we have to demand it.
My Pause (II) signifies my pledge that: I refuse to be kept invisible. I refuse to be defined by a corrupt medical establishment that casts doubt on my reality. I am no longer going to apologise for my basic needs as a chronically ill person. I am no longer going to waste my energy defending myself to deniers. I am proud of how I have learned to survive thanks to my peers and those who went before us. I choose to devote my scarce capacities to strengthening the Sick community. I choose to be proactive not reactive. I choose to set the agenda: “Nothing About Us Without Us” I will stand up for those too severe to tolerate standing up. I insist on our human rights to dignity and respect.
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Severe ME Day commemorates Sophia Mirza, the first person confirmed to have ME as cause of death on her coroner’s certificate following a medical inquest. She was born on 8th August, 1973 and developed ME following multiple viral infections in her mid-twenties. However, her death was caused not as a direct result of the severe inflammation of her spinal cord which made her life a ‘living hell’, but because she was sectioned without her mother’s consent by police and health officials who broke her door down. After brutal treatment in a locked ward of a mental hospital, her health deteriorated dramatically and her body became unable to tolerate food or water. Sophia died in 2005 alone in a darkened room, unable to bear light, sound or the presence of another person. She was 32.
This August 2021, I am proposing to redefine the word Sick. Historically, many oppressed groups seek to reclaim words hurled at them as slurs. Note this excerpt from a lecture entitled ME: what do we know (real illness or all in the mind)? given at the University of Strathclyde in October 1999 by Wessely School psychiatrist Professor Michael Sharpe:
“Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the ‘reality’ of their condition (and who) are in this sense undeserving of treatment…Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service.”
People with Myalgic Encephalomyelitis are sick and tired of our chronic sickness being portrayed as malingering, or our complex neurological-leading-to-cellular-metabolic-dysfunction disease being reduced to mere ‘fatigue’.
In this new era of epidemic Long COVID, it is time for us Longhaulers to start upholding the value of our hard-won insights into our condition. Those of us whose lockdown is permanent have a lot to teach the world about patience, about finding meaning in severely social-distanced lives, about surviving indefinite isolation.
Labels such as ‘undeserving sick’ or ‘illness fakers’ are beneath our contempt, and all Longhaulers – ME/CFS, Long Covid and other ELCI – must unite and rise above them.
Let us make #SICK stand for the Society for the Inclusion of Chronic Knowledge.
As a South African immigrant, and a student of Biko‘s work, I take great inspiration from the Black Consciousness philosophy that the oppressed have to free their minds before they can free their bodies. While there can be no parallel with hundreds of years of slavery, colonial occupation and apartheid, Biko’s beliefs about the necessity of building foundations of self-esteem to overcome institutionalised oppression hold true.
In the face of systematically targeted hate speech, which villifies us while simultaneously undermining our disease’s credibility and research funding capacity, we first have to affirm each other.
To honour the Severe, the Mild and Moderate have to stop hiding our struggle, and start celebrating our persistence in a world that insists our suffering doesn’t exist.
There is no shame in being Sick.
Sick Consciousness is the necessary precursor to Sick Pride, which is the progenitor of Sick Power.
As Biko’s definition of Black included all people of colour, so our definition of Sick must include the full spectrum of the neurodiverse to the chronically unwell who don’t match capitalist, patriarchal definitions of ‘fit for work’. We must stand together, defiantly insistent on our intrinsic worth and the accommodations that could easily be made for our access.
In the last 50 years, as society has progressed, the heteronormative majority have had to make way for gay, non-binary and trans realities. Now we must demand another shift in the consciousness of the privileged: beyond their status as Abled compared to the Disabled, they must be compelled to realise how very Well they are compared to the Sick.
We the Sick are less prisoners of chronic fatigue and chronic pain, and more prisoners of the Well’s chronic lack of imagination. They just cannot conceive of feeling this lousy for this long.
I understand the Well’s reluctance to acknowledge our reality, because it means becoming aware of unplumbed depths of vulnerability in themselves. I myself, a 70% bedbound person with multiple sensitivities, shy away from envisioning the gruelling daily existence of those with Very Severe ME, tube-fed and occasionally paralysed, because of my well-founded fear of descending to that state. But if we the Sick don’t start ruthlessly telling it like it is, who will? If so-called ‘Chronic Fatigue Syndrome’ was more precisely named ‘Living Death Syndrome‘, perhaps the risk of getting it might finally be taken seriously.
Ask the irrepressible Jenny Rowbory, better known on Twitter as Stroopwaffle, bedbound since the age of 18 in 2004. She was last able to write – with incredible positivity and lack of self pity – in April 2020 before a decline following damaging spinal surgery has left her unable to type at all. Her pre-surgery life was already purgatory – if you click on nothing else, please read her blog from October 2019 where she describes surviving on 2 hours sleep a night because that was the longest time she could rest her head on a pillow without dying from lack of blood flow to her brain. Order an audiobook of her poems and support her fundraiser to get her to the US for corrective surgery here.
This August 8th, let us Pause to salute our Sophia, our Stroopwaffle and the millions of severely Sick who continue to endure.
The morning before we crossed into Kenya, when Sampson announced he needed a day off to rest, I was hugely relieved there would be no border duty that day.
The previous evening, we’d stopped in deserted bush 75km before the frontier, the most peaceful spot in Ethiopia so far. A couple of guys had walked past, but there were no crowds of baiting youths. Zola and I took PJ for walk to make sure she’d crash out and not be scampering around in the small hours. We passed a silent night in velvety darkness.
The day before Sampson had driven 250km. At 5pm he’d taken the exhaust brake off with Zola’s help and discovered it was stuck on halfway! Something had melted on to it. They cleaned it and replaced the DIY gasket with the new joint Papi had belatedly sourced for us in France. Sampson got very cold and although I heated up dahl and served it with thick crumpet-like roti breads immediately they got inside, he was feeling completely shattered by bedtime and unwell by morning.
Thank God I’d finally managed to book his flight to UK for his brother’s wedding, (at double the cost it would have been if he’d booked it the first time he looked). The internet connection kept dropping so it had taken hours. Only with the help of my best friend, bless her, did we clear the final hurdle, booking his coach to Plymouth. It was such a relief to be sorted.
It felt like Big Reg had finally rolled into the Rift Valley proper: the countryside was lusher, greener and the earth much more red. The people were darker, wearing bolder prints; the women with centre partings and plaits either side. Although it was markedly flatter here on the plains, we were still at 1500m.
After Maths, Zola’s English lesson discussion led to research on the tango (who could have predicted that would be the topic he’d choose to explore?!) and poring over the atlas looking at Argentina for a fascinating hour exhausted me. I was happy to hand over to Dad for Natural Science after lunch.
I commenced chopping of the final few nasty carrots and half a cabbage, all of which I’d been planning to chuck but now we had to make last an extra day before making it to the market before the border. The carrots were bendy and so vrot, I had to peel them all and disguise them in a tomato and veg soup supperpot. I wasn’t up to editing, so lay on the bed doing the traditional reading-of-the-country-to-come in the Lonely Planet Africa. By bedtime I was aware all was not right.
At 3am I awoke knowing my immune system was under siege and fighting. The scariest thing was that I knew my heart was under pressure. I couldn’t explain it, but it was feeling weirdly frail and fluttery, perhaps arrhythmic. My hot flushes had gone next level in terms of frequency and intensity. When I got up for a wee, I felt very shaky.
By morning, the pain in my arms was ridiculous. How could fall-out from chopping a few veg and holding a heavy book yesterday be this bad? My rotator cuffs were behaving as if I’d been stretched on a rack. My arms felt like Elastagirl’s. My usual PEM was definitely being magnified by something else. It took everything I had to pull myself together and get out to do T’ai Chi.
This morning was the first time I mistook Zola for some bloke in the distance – he was looking so ‘manly’ I hadn’t realised it was him coming back from his walk!
I felt much better in the afternoon, as we drove south towards the border – perhaps because of another drop in altitude. At 600m it was so much warmer; the mossies and jungle bugs were back.
Frontier town Moyale has a hectic reputation for aggro: in 2012, 20000 refugees had crossed into Kenya following clashes in the area. And in March 2018, just 2 months previously, another 10000 refugees fled Ethiopian army shootings of 13 civilians in Oromia, 80% of them women and children according to the UNHCR. A security guard on the Kenyan side later told Sampson that 5 people had died the previous week, shot inside the border post itself.
But, thank goodness, this 24th border crossing was possibly the easiest ever. A sign on the vast brand new building was promising ‘One Stop Border Control’ although they weren’t quite there yet. The Ethiopian official who dealt with our carnet explained that soon there would be Kenyan colleagues in the duplicate office next door, so truck drivers could stamp out and stamp in at the same place! For now, the huge taped glass hangars were mostly empty. (While writing this up, I discovered Moyale finally started fully operating like this last month, reducing processing times by 30%!)
On the other side, the good news: a 1 month visa for Sampson was free, 3 months for me was $50 and 3 months free for kids! The bad news was that Kenya charges $100 for a ‘Foreign Vehicle Permit’, so swings and roundabouts. Mr Alex in the customs office, explained in super fluent English (such a surprise after months struggling in Amharic and Arabic) that Sampson would have to go into town to get insurance. But as it was now after 5pm, Mr Alex said it was cool for us to stay in their massive empty carpark with an armed guard overnight.
We ended up stuck there for three.
In the morning, when Sampson returned to say he’d found the insurance office but their computer was down, he saw a thick sludge of motor oil under the truck. It had only been changed in Cairo, so he suspected turbo trouble. Why do we always break down immediately after booking plane tickets with a deadline to get to the airport hanging over us?
Meanwhile I was feeling so weedy, I couldn’t even sit up for Maths. I had a hellish headache and low fever. The hot flushes were continuing crazy extreme – my temperature regulation had gone haywire. I was hoping this was due to a period or menopause and not typhoid or bilharzia from the lake. A sudden excoriating kidney pain was so fierce I got scared. ‘Please God, not antibiotics again, not when he’s about to leave and I have to single parent’.
I didn’t waste energy washing or doing T’ai Chi, just got ready to leave for a clinic. But, like me, the truck’s pressure was non-existent and its temperature kept rocketing, so Sampson took a motorbike taxi to find a mechanic.
We were lucky: Moses was the only truck expert in town and Sampson found him just as he was about to leave on a bus to take parts somewhere. Moses and his assistant Ibrahim cleaned, replaced and flushed the oil filter and air-cleaned the sieve filter – it took a needle to push through the last bits. It looked exactly like what happened in Ebolowa, Cameroon in 2013 but that was breakdown 8 and this was no. 19!
I refused to go to the clinic on the back of a motorbike – it was too exhausting a prospect and there were too many variables – but I started taking 9 strain probiotics. The 3 pills I had today really helped me stop deteriorating so rapidly. I entertained Moses’ 4 year old boy Nurdeen (whose mom is Somali) with drawing and snap but had to lie down all afternoon. Sampson was shivering with fever next to me on the bed. I felt OK if I lay completely still, but he had to keep dragging himself up to interact with the mechanics.
His final motorbike taxi ride to get cash to pay them finished him off – an involuntary fart ended up ruining his trousers, poor thing. He just managed to wash before he collapsed. The fact he was wincing at the light and complaining about the cold breeze as he got out of the shower seemed painfully ironic: that sensory vulnerability was my daily reality he’d been denying this whole year.
The good news was that Ruby had managed to get 62% for an Afrikaans oral! Despite missing 3 years of the subject and being denied exemption, she might pass Matric after all.
Zola was a star and cooked us carrot, spinach and red bean stew. For the first time ever, PJ didn’t come in at teatime demanding to be fed. After a long hunt, we found her playing hooky with a strapping white and ginger tom behind the gates of the UNHCR food storage area. He was very handsome with a debonair aura and she was entranced and didn’t want to come home. We called him Bob.
Overnight, poor Sampson was on the toilet every hour. I started the day determined to ‘Be The Change…’ and got him a cold flannel for his feverish forehead. He didn’t ask me how I was. I wasn’t sure I could grow old with such a lack of compassion.
Despite dropping oil pressure, Big Reg made it into town. Unable to sit up, my first views of Kenya were glimpses out the window obtained by holding up the camera and snapping randomly from my bed. Moses met us outside the Afya Nursing Home and set to work again while we went inside for typhoid tests.
Sampson was so convinced he had giardia as well, he took a tupperware full of his diarrhoea along (although I told him it wasn’t – sadly I know that smell too well from the illness that triggered my ME in 1992). He was so stressed about it, he rushed off ahead. I longed to have someone take my arm and help me down the uneven street in the midday heat into the clinic.
The blood tests showed I had a higher dose of typhoid than he did. I was more ill with half the fallout because I have had to learn how to pace myself, living with varying degrees of such symptoms daily for decades. Thank goodness Zola was clear.
When I explained to the doctor how badly I’d reacted to the typhoid medication we’d taken just 2 months ago in Sudan, he prescribed Cefixime for me: a 5 day course instead of 14, the same drug the kids had taken back in Cote d’Ivoire.
Meanwhile, Moses had somehow sorted the compressor, cleaned it of carbon, so we could set off. Alleluya!
An hour later, we came to rest in a calm green new world.
As always, the first 24 hours on the meds felt like a miracle – my headache was gone and I felt bolstered enough to walk 100m down to the river bank. An old man with legs as spindly as his stick came past, herding a few cattle. I struggled to communicate with him but gave him a couple of tins. Local superhero Guyo Kanu Jillo came down to check we were OK and told me the old feller was deaf. Kanu himself was a Ward Manager looking after Ethiopian refugees in the camp nearby.
He told me the reason Ethiopia is much harder for travellers is because “they were never British”. “In Kenya,” he opined, “we follow British ways, democracy and the rule of law”. He didn’t seem to be just saying this because he thought mzungus like me would approve, but genuinely believed in the sacred nature of the latter.
I found it deeply disconcerting that his education had taught him that Kenya was superior to Ethiopia because it had been colonised. I might have expected that 50 years ago, but post-independence? The old guy probably remembered the young Princess Elizabeth’s visit to a nearby Mount Kenya lodge in 1952 when her father King George VI died, as dramatised in the episode of The Crown we’d watched this week. I wish I could have asked him what he thought about that.
We had a big hike ahead of us: it was 750km to the capital and 2 days until Sampson had to be at the airport. Lying down in the back after my second typhoid pill, I was aware that I was fine as long as I didn’t do anything. Incapable of editing, I entertained myself watching Prince Harry and Meghan Markle’s wedding blow up on Twitter (notably via Caitlin Moran, Black Girl Nerds and Tom Eaton) in stereo with my Mom’s commentary on Whatsapp! In the end, I had to stop that too because my arms hurt from holding up the phone.
From the cab, Sampson saw herds of donkeys, camels, warthog, ostrich and a giant salamander twice the size of a cat! When we stopped to buy loads of lovely fruit, it felt both surreal and comforting to see how unbothered the quiet town of Marsabit was, 3 days into Ramadan, by the royal shenanigans convulsing the other side of the globe.
That evening, Zola concocted his delicious coriander/ginger/tomato paste, while I made mash and fine green beans to serve with tinned hummus – yum!
Day 3 of meds, I just managed T’ai Chi then climbed back onto bed for the rest of the day. We still had 450km to cover, double our usual maximum. It was difficult for Sampson driving such a busy road while ill. I wish we could have taken it easy instead of bombing towards Nairobi. I knew Andrew and Dee had spent a couple of weeks in this area because it was so beautiful, and I was grieving what we were missing. I tried taking more photos out of the window, hoping to capture insights. But they were just a blur.
Sampson saw many young people wearing nothing but skins and beads as we drove through the rural area, but didn’t think to mention it to me until we were climbing again and people were wearing anoraks against the cold. Suddenly I needed a blanket.
I managed one hour sitting up in the passenger seat around Mount Kenya – it was too misty to appreciate fully – but then I was too ill to talk to Ruby when she called us. So thankfully Zola was sat in the front with a seatbelt on when Sampson hit a series of speed bumps bouncing Big Reg so hard, I screamed and all the toiletries jumped out of the shower rack.
Hurtling along the highway, Sampson caught sight of the sign marking the Equator. With all the lorries thundering past, it was 200m behind us by the time he managed to pull over. In the state I was in, it was too far for me to walk and he refused to waste time doing a U-turn to take me back to take pics.
Fair enough, the traffic was horrible on this narrow road – I insisted Zola put on a high vis vest to walk back up there with his Dad. But it was tough to sit there alone, reflecting on past photo shoots at key milestones around the continent, and not be part of this one.