On 30th Oct it was exactly one month before Ruby flew into Cairo to meet us, and the week’s to-do list was intimidating: collect the new carnet from the SA Embassy in Athens, book the Big Green Truck on a RORO ferry, apply for Egyptian visas, book flights to Alexandria, get the pets to a vet for their final approval and, oh, find somewhere cheap to live for the days in transit because after making the ‘twice the value of the vehicle’ Egyptian entrance deposit to the AA, there was zero cash left in our account…. Yet all of this was causing me less stress than the fact that my capacity was shrinking at a rate of 10% per degree centigrade dropped.
We got up at 4am to avoid rush hour on our drive into the capital. Sampson was panicking thinking we were too late, but Greece wakes later than Africa – the road into central Athens was clear. Big Reg sailed down the wide open boulevards lined with impressive buildings, from what I could see from my bed, and arrived outside the SA Embassy at 5.45am. It was still bitterly cold.
Early morning Twitter had a UK minister reportedly calling his secretary ‘sugartits’ in the latest #metoo scandal and President Zuma reportedly described as ‘a gangster like us’ by Agliotti. Hardly an edifying start to the day.
I was wasting so much energy trying to keep warm, wrestling layers of clothes on and off morning and evening, that I was beginning to avoid having showers because the effort was so exhausting. Pain was now constant, the aching in my back, hips, arms unable to abate in the absence of afternoon heat. But still I put on two hoodies and forced myself to do T’ai Chi outside on the cracked marble steps, watching the clouds of my breath freeze on the air. For I knew that once I gave up gently oiling my joints and stoking my internal boiler, I would be on a slippery slope back down to bedridden.
We were greeted at the SA Embassy by the fabulously warm First Secretaries Mrs Kgomotso John and Mrs Sejako Marole. Having picked up Big Reg’s third carnet, posted there by the AA in Jo’burg (thanks Bokang!), we were invited in for rooibos. We were exclaiming at the warmth of an African welcome compared to a general lack of greeting in Europe – though Mma John added that her last posting, Equatorial Guinea, was very dour as so oppressed. They told us some hilarious stories of how badly Greek people drive and how scratched cars are considered a matter of course here and nothing to make a fuss about!
Sejako is so full of positivity, I loved her immediately. She’s a mother of four and was telling us tales of the family setting off in the car to see Mount Olympus with just “water and salt” in the way she was brought up. That’s the soul of a true African adventurer!
Mma John was impressed by the cleanliness of truck (I had made a bit of an effort over the weekend to get the ‘en suite’ sparkling) and how Zola was reading Shakespeare. When she pressed €30 on me to treat him, it felt like a present from his gogo 🙂 He got on with school while I made lunch before collapsing on the bed for a couple of hours. The café Sampson was sat sending emails from was too smoky for me to go in.
* * *
I started writing the following 3 part poem late in 1994. It was the only thing I completed during the period I slipped from being moderate to more severely ill with M.E. It took me several months.
I was 24.
From the Bench
She sits like Patience on a monument
Smiling at grief
Twelfth Night, II iv 115
Now I am an old woman
I stoop slightly
As if my spine aches to carry my heavy head.
My bones complain
Noises hurt me
Crowds fluster me
And sometimes I forget things.
Somedays it’s my heart
And somedays it’s my ears
And somedays it’s my back
And somedays I’m just
I am an old woman
Blue with cold on spring days
Not easy to carry bags of shopping
And stairs might as well be mountains.
Walking through the Gardens I saw
Two smiling white-haired old ladies
Sitting on a bench, resting
their pink tweed suits
their thick ankles
Pausing in the shade.
They overtook me later
As I sat on a bench, resting;
I know how their old legs feel.
Somedays I am frustrated:
My body has betrayed me.
Somedays I feel life is passing me by
Yet I am content to sit quietly
Surveying the living
I have lost myself.
The most frightening thing is content.
* * *
The next day was another 4am start, driving to the shipping agency Minoan Lines in Piraeus. I sat wedged in the front wrapped in a sleeping bag feeling battered and bleak. Going back to bed from 5.30–8am saved me. At 10.30am I had to meet the shipping clerk Xanthi whom I’d been dealing with on email and turned out to be as lovely in person as I’d anticipated. She confirmed there was absolutely no option for us to travel with the truck, as zero passengers were allowed in the port of Alexandria.
For the first time on this trip, Big Reg and family Sampson were going to be separated. I was trying not to find the prospect of travelling without a kitchen or a bed in tow terrifying.
We called in on the Egypt Airline offices and got more bad news – they were no longer flying direct to Alex and all the flights I’d seen online had been cancelled between Oct-June. I was praying we weren’t going to have to fly to Cairo and then bus or train north.
We parked near the Acropolis just before it closed at 6pm. I realised there was no way I could possibly walk up there but still it was awe-inspiring to look up and see the Parthenon lit up at dusk.
I was even more thrilled to find it was only €5 to enter the award-winning Acropolis Museum and that wheelchairs were available; I promised myself that Zola and I would get back for a shufty before we left Athens. After the boys had enjoyed their souvlaki supper courtesy of Mma John, we moved the truck at 11pm to be nearer to the Egyptian Embassy. Sampson posed Big Reg as ‘broken down’ surrounded by Papi’s orange cones in a restricted parking zone so I didn’t have far to walk.
Ist Nov dawned 15˚C inside the truck. Sampson got told off for looking like a vagrant while doing his exercises on a mat outside the posh shops. On my way to submit our Egyptian visa application forms, I saw this guy:
On my return, I called out to Sampson, bent over the open bonnet in his overalls looking busy, “OK we can go now”. He started revving the engine to raise the brakes’ airpressure so Big Reg could move off. This takes several minutes (and then it’s another five before the engine is warm enough to switch to running on waste veg oil).
As this sent a cloud of choking diesel fumes into the Stavrolexo Café, I glimpsed a glamourous young woman at the bar throw her hands in the air. So I got down and took our Greek translation of the letter of introduction into her to apologise. When I touched her arm, she was suddenly crying over her cigarette. In between sobs, she said sorry, it had just felt like the last straw: she had not been paid for 3 months, didn’t know how she was going to make her rent and just didn’t know what to do.#This Is Europe
What could I say? I hugged her and told her to keep in touch. I know she follows us on Facebook, so I hope things have cheered up a bit for you by now Adeliki xxx
Finally, thanks to a brilliant tip from the SA Embassy, we parked off outside the Olympic Velodrome.
Zola was also having a tough day. Upon gentle enquiry, he admitted he was anxious about the upcoming crossing and also upset by reading facts in his EMS textbook about inequality in South Africa, pointing out ‘black households earn on average R7000 per month, while white households earn R62000 per month’.
“That’s almost nine times as much!” he said in a shocked voice.
God how I love that boy.
I was so glad he got royally treated on an evening out with Sejako and her kids (Susie 9, Kudzo 13 and Step 16). Zola went along with them to footie training, then the boys roamed around the mall together and got KFC. He felt very comfortable and really enjoyed their company, bless them for their kindness. I was sad to be too weedy to spend more time with their lovely mum.
* * *
I am an old woman:
And sometimes I cry
When it pains me too much
To pin up my hair.
I measure out my energy
Like a child, honey
Like a miser, precious gold.
I pace my steps
To rush me is a violent crime.
O for matches to prop open
My brain’s sightless aching holes
Ever fumbling for reminders
of how I used to be.
Sometimes I panic –
And sometimes I am tranquil as a zombie.
Sometimes I think I am acquiring Patience;
And sometimes I think she is a cruel taunting little girl.
My ankles are thinner
But we are all old women
Bitterness rides us like surfers –
On calm days we care little for what we cannot do
On rough days what might have been
Last year I was an invalid.
Now at least I have the strength
To turn over in bed
To lift a cup
To hold my head up and tell you:
I am an old woman
I deserve respect
No I am Not content
To sit in sunshine
Winter is ever within me
Withering my vitals.
* * *
As Sampson and son set to filtering the remainder of the oil we collected in France, I sat inside the Velodrome on their wifi sending out copious copies of documents ready for Big Reg’s boarding of the ferry and investigating flights to Alexandria. This was quite enough to do without the extra hassle of blagging TWO pets onto a plane. I spent three hours hanging on the phone to Turkish Airlines over three days sorting it out. When you’re feeling very ill, unavoidable energy-sucking admin is pretty much my idea of purgatory – especially as at the weekend, I had to chase everything up sitting outside their closed doors on a camping chair during howling rain and wind wrapped in a blanket.
The first call centre operator told me requests for carrying pets could not be processed until our flights were booked. But after I’d paid for our tickets, the second told me that flights shouldn’t be booked until pet carriage had been approved, adding that it wasn’t going to be €10 for the cat, as the first woman had quoted, but $70. Eeek.
I followed up that request with an enquiry about Sampson’s ‘emotional support dog’: he’d done the research online and obtained necessary supporting documentation from a psychiatrist. But when I mentioned ‘Doberman Pinscher’, the operator said no, that breed was forbidden. I quickly backtracked and said I can’t remember exactly what it says on his pet passport, but it’s mixed breed and only a puppy…
On day three, as the boys were getting everything out of the roof box and packing it into Zola’s bedroom in the nose cone for safety, I found out the cat had been accepted, but the dog refused because it was a Doberman. “Oh no,” I said “that’s not the case, it’s a mixed breed, Doberman and other, and very small – under 7kg” and re-submitted our request, adding “I really don’t want to be separated from my husband as I’m a wheelchair user – if we can’t travel together we will need to refund our tickets at no charge because we were given the wrong advice about booking before making arrangements for pets… perhaps I should submit a complaint?” Over lunch, Sampson was going into a flat panic, already planning how he would have to travel overland separately with Monte, with no thought to how I might manage to extricate the truck from the port alone. Thankfully, the lovely Emre called me back to say our request came back approved. Alleluja.
This was nearly a ‘train smash’, but Zola had a bike one: pelting round the carpark on his trusty Merida, he bashed his face into the wire fence and put a hole in his new jeans. I think what most freaked him out was that the people sitting in a car next to him didn’t rush to his aid. Hmmmm.
Out of the blue, ‘The Backpackers Greece’ contacted us on Facebook having seen the truck, hoping to hook up. I left a message asking for accommodation advice as we were putting Big Reg on the boat two nights before flying into Alexandria to meet it. They called back and said we could stay at their place in Plaka, a few minutes from Acropolis Museum, free of charge! Travellers know there is nothing more precious than the kindness of strangers.
Meanwhile Jen Brea’s ME documentary Unrest was at long last launching in US and UK with news about it breaking everywhere – I was simultaneously so buoyed by the coverage and so frustrated at not being able to see it.
* * *
Since I was a young woman, dancing
I have shrunk
My horizons, distilled.
I am no longer
Caring and carefree
But cared for.
I am silent
But I am not brave
I am tired
two years’ tired
I have clawed my way back to here.
Now I am struggling
To stand still.
My life is the fitful nightmare of frozen motion.
My ambitions sit beside me on the bench
Arguing with Patience
I look forward
Gathering myself to walk on.
We are all old women
Some of us are merely older than others.
I hope to be a wiser Old Girl
For this premature rebirth
I want to be ready to hug Patience to me
And swing her round, laughing
I want to dance again
On any old ankles
And be glad for this time
Pausing in the shade.
* * *
Those last three days in Greece were hectic.
The first day was one long slog, with the truck pulled over ‘broken down’ in No Parking zones all over Athens. Zola and I spent the morning traipsing up and down with Lucky in a carry case, dragging a reluctant Monte on a lead trying to locate a vet to get the pets signed off as healthy – bless you Dr. Calliopi Marouli and her assistant V.
After picking up our passports with visas from the Embassy, I trawled several supermarkets looking to stock up with rice cakes (as we were unlikely to find any in Egypt). We topped off the day with a late night sewage drop at a dump far out of town followed by a 23 point turn on the tightest corner ever on a narrow street of old Piraeus with me outside in a high vis vest holding back the traffic. I’ve never seen Sampson sweat as much at midnight in winter.
Day two we were finalising details on the Bill of Landing at Minoan Lines at 9am, before checking in with customs broker Mr Thomopoulos for clearance. We had lunch, washed up, locked down and Left The Truck. Eeek.
The taxi driver I managed to flag down outside the port refused to take us when he saw Monte, but relented when we showed him the nappy and begged. When Sampson went into the Avis office to pick up keys, Zola and I hid with the pets outside. It was such a relief to pile our household inside that tiny rental car.
Plaka was soo trendy, with tiny winding old city lanes crammed full of smart cars, jewellry shops and expensive bistros teeming with hipsters. I remembered Barbs saying that the UK was at ‘peak beard’ in 2015 – Plaka was just getting there.
The Backpackers Greece greeted us warmly: the lovely Kiara is a vivacious natural beauty with a unique style, which brought to mind Angelina, Audrey and Amal – masses of hair and brain. She’s studying Arabic and Islamic law. Her man Giorgos was a model of understated quiet like other adrenalin-junky thrill-seekers I’ve met – he’s a serious snowboarder. Check out their evocative 2 minute video of Athens here.
It was so incredibly kind of them to go stay at her mother’s and leave us total strangers in their bijou flat with a pooing puppy and a freaked out kitten. The boys ate souvlaki again while I made gluten-free pasta in Giorgos’ mini-kitchen. I was beyond exhausted, but still unable to sleep with Monte whimpering from the bathroom all night.
Day three was my last chance to go to Acropolis Museum, and we were tantalisingly near. But Dr. Marouli had told us that we needed one more piece of paper to get the pets clearance to leave the country – an export document from the Ministry of Agriculture. I thought we might be able to get it done in the morning and go to the museum in the afternoon. But having left Zola in the flat minding the babies, Sampson and I spent most of day driving round the city searching for the right building – which turned out to be an unmarked office inside an unmarked block which was part of the Ministry of Transport – all to get two pieces of paper laboriously filled in and stamped by official vet Ms Aikaterini Dikaiou. We didn’t even get time to meet Kiara and Giorgos for lunch, because at 3pm we had to leave for the airport.
(I try not to dwell on how a dog cost me a once-in-a-lifetime opportunity to visit the Acropolis Museum. I tell myself I’ll go when the British Museum gives the Parthenon Marbles back. And the Benin Bronzes. And the Rosetta Stone. And… )
How on earth did I manage to do all this when ME was making me feel so ill? Well, that’s the million dollar research question, isn’t it?
The first ME book I took off the library shelf in 1993 told me that we have a dysfunctional metabolism so our energy levels are like a heavily overdrawn bank account. The only way to get in control of the condition is to invest in rest. You must only ever do half what you think you can and ‘bank’ the rest of the energy for healing. Slowly but surely you will build up your reserves. It may take months or years but, if you can avoid unexpected outlays, you can get back in the black.
Of course, terms and conditions apply: funds can go down as well as up. It’s perfectly possible to do more than you should, push yourself beyond balance – I can ignore my shouting body and carry on talking and walking to get things done in a pinch – but the spendthrift never gets away scot-free. You always pay for it. Often with whopping interest.
But because you only see us pwME talking and walking and smiling, and not lying on a bed in the dark for hours or days or weeks afterwards, you think we’re making this shit up. And I understand. It seems unbelieveable to me too. Looking at me then, sitting dizzy in their flat smiling wanly but looking absolutely fine, Kiara and Giorgos will never believe that those three days took me three months to come back from.
But hey: I had no choice. I was prepared to do whatever it takes to get back to Africa.