Eight months on and still writing

Christmas is almost upon us and the end of the year is looming. It’s traditionally a time to look back and reflect on the last year before looking forward to a new one. There were three big things that happened for me this year. I started to take part in a clinical trial for a drug for Secondary Progressive Multiple Sclerosis, I went to Australia and I began this Blog.

My MS over the last couple of years or so moved has from the more common Relapsing Remitting kind to the Secondary Progressive kind. The short version to explain this is that in the early stages of the illness, when the body goes all wrong, it then pretty much repairs itself. After a bit it gets fed up with its work keep being undone and stops bothering to fix it. And so when there’s a flare up, whatever damage it does, stays. It’s called secondary progressive because it’s the second stage of the illness. If you have Primary Progressive MS, it starts at this stage. Either way, at this point there is currently no treatment licensed and available to treat it. Hope starts to run away. There is, however, an enormous amount of research happening, some of which is becoming really quite exciting. So when I was given the opportunity to join a trial a light appeared at the end of the tunnel.

Now that I no longer have a restriction on how long a holiday I can take, I decided to go to Australia, and take the time to see all my friends. They live at opposite ends of the country you see.

I’d been thinking about setting up a blog for a while but didn’t know if I had the motivation to keep it up. Having a trial to write about, gave me that. I’ve enjoyed every minute of the challenge of writing a short piece to post every week. I hope you’ve enjoyed it as much as I have. But I think it’s time to take a break over this busy time of year, to refresh and rejuvenate my writing.

I wish you all the best Christmas and New Year and look forward to seeing you all again in January 2015.

A Greek Wedding Part 2 - The Ceremony

Inside the church was a vision of gold and light. The guests filled the tiny space to bursting. Many had to stand. They hushed as the choir began to sing. It didn’t matter that I didn’t understand a single word. It was beautiful.

The Bride and Groom were at the front, with the little bridesmaids behind. The priest sang his words. He placed a crown each on the heads of the betrothed couple, symbolising that they are King and Queen of their home, which they will rule with wisdom, justice and integrity. The Koumbara exchanges the crowns three times, following which the priest did the same. This sealed the joining of the couple as one.

Behind them, the littlest bridesmaid was playing with Helen’s train. Every so often, Helen’s friend got up and straightened it. The little bridesmaid thought this was a good game and ruffled it again.

The Bride and Groom’s right hands were joined, and the rings blessed and exchanged. They were placed on the right hands. The priest read a passage from the Bible, then poured wine into a single cup, from which the Bride and Groom took three sips each. Then it was time for them to take their first walk as husband and wife. The priest led them slowly three times around the table on which had stood the crowns, candles, rings and a cup of wine. It signified the promise of their marriage bond until they are parted by death. At the end of the ceremony the Bride, Groom, their parents and Koumbara stood at the church door while the guests lined up to individually congratulate them.

At the reception afterwards for the Bride and Groom to celebrate with their closest friends and relatives, the top table was decorated with the same flower display as had lined the walk into the church. Around the venue were lanterns and columns with flowers and candles. On each table was a vase of the same flowers. And at each place setting was a decorated ring of entwined branches, flowers and ribbon created by the Bride’s mother.

After the meal was the first dance. Helen and Jason nervously took to the floor. They needn’t have worried. It was beautiful. More couples joined them and the celebrations began.

Helen’s brother led the traditional Greek dancing. Sara joined in though she didn’t know what she was doing. But he was a good teacher and everyone followed his footwork closely.

The cake was cut. The Bride and Groom each fed the other one a mouthful to the applause of the guests. The cake was shared with them and the dancing continued.

A Greek Wedding Part 1 - Arriving at the church

I went to Athens, but not to see ancient Greek ruins. I was going to the wedding of my two good friends, Helen and Jason.

As in British weddings, it is tradition that the bride and groom do not see each other the night before the big day. SoJason went out with his friends then back to his parents for the night, while we girls had a delicious meal in a nearby restaurant. It was great to meet Helen’s friends. They all spoke such good English, I felt embarrassed that it’s the only language I’m fluent in. But they made me feel very much part of the group even though we had only just met.

The next morning, Helen went to her parents to prepare for the day. Another friend from the UK, Sara, and I got ready at the flat and then took a taxi to her parents. It is tradition for the bride’s friends to visit during the day’s preparations. Having arrived at the address, neither of us could remember which number within the building they lived at. Thank heavens for mobile phones. Helen let us into the building. “Can you remember which floor they’re on?” “Err… no.” Out came the mobile again.

Inside the flat it was all go, but calm. The dress was hanging up, the mother of the bride was having her hair done. Then it was Helen’s turn. The concentration on her face and that of her hairdresser was immense. The photographer arrived and set to work. At one point she was recruited to help with the hair. Meanwhile Helen’s mum was having her make-up done. Finished and dressed in her finery, she looked beautiful.

She, Sara and I left to go to the church to organise the final arrangements. It was tiny and beautiful and in the middle of a wooded part of town. A cream carpet was laid from the steps to the entrance. Then it was lined with flowers and lanterns that lit the path as the sky darkened. Esther, with Nikos’s and Margarita’s Mums prepared the Wishes Table. On it was a book for guests to sign with wishes for the happy couple.

The groom paced about nervously. He looked smart in a blue suit with a lilac tie.  Soon, the Koumbara (Maid of Honour), the little bridesmaids and the guests began to gather.

Then, with a serenade of beeping car horns, the Bride and her father arrived. A beautiful, white vision emerged from the car. The congregation applauded and parted to allow Bride and Groom to join. Together they lead everyone inside…

Master of Sabotage

MS is a Miserable Sod
All powerful it thinks it’s God
I hate it immensely
But what can I do?
It creates disaster
Maybe I’ll sue
It takes my dignity
It knocks me down
It makes it difficult
To go into town
It stops me from walking
It doesn’t do talking
It has no reason
For committing treason
Insidiously creeping
I think it is sleeping
But then it is leaping
And leaves me weeping
It doesn’t give up
It doesn’t stop
Relentless and endless
It continues to bop
Master of Sabotage
Creator of doom
It grows and grows
Making more gloom
My feet feel like clay
It goes on all day
I want to shout
Let me out
It doesn’t hear
It adds to my fear
There’s no rhyme or reason
To where it will go
What will be next?
When will it show?
There is no guide
And nowhere to hide
It doesn’t care
It isn’t fair
Always it’s with me
It won’t leave me alone
I can’t give it back
It’s not on loan
I want a break
I want to eat cake
It’s my life
It’s not its to take
But take it, it will
Even though it won’t kill
Maybe that’s worse
It makes life a curse
What is it for?
This MS war
To prove what
I haven’t got

But...

 
There’s more that I have
Than there is that I don’t
I’ll work on those strengths
And give in I won’t.
I can laugh and can talk
With wheels I can walk
I can still get about
With my friends I go out
I can’t hold a pen
But still I can write
I tap on my keyboard
The words they come out
They jump and they dance
When I give them the chance
They say what I think
And how that I feel
All my frustrations
Those feelings are real
The heartache and anger
I’ll channel it through
Watch this space
I’ll show what I can do
I’m more than MS
FUCK YOU!!

Sea to City by rail

I've started a course on Literary Travel Writing at Citylit in London and I thought I'd share with you one of the pieces I wrote for it. We were tasked with writing about a journey.

I boarded the train at Southend Central. “Are you ok with dogs?” the lady I sat next to asked. I was confused. Then a little head appeared from under the seat. “She’s very good” I said. “She used to travelling,” the lady replied. “When I first got her she was too little to leave at home, and now I wouldn’t travel without her.”

Stopping at Chalkwell the beach is empty and deserted. The sun tries to break through the mist and cloud. I can see a dulled yellow disc behind the curtain. It casts a bright gloomy light adding a blue tinge to the grey.

Leaving the station the train runs between the sea and the houses overlooking it. And squashed between the track and the river is a footpath that leads to Old Leigh. The town was spilt when the railway line was built and the side next to the sea has retained a village like atmosphere. It’s the place to buy the freshest fish. The little boats, many of whose predecessors took part in the Dunkirk rescue, stand upright in the mud while the tide is out.

We move into Hadleigh Farm. A tractor ploughs a field. The Castle remains stand tall and clear, framed by the sky behind. In front, lies lush green hillside sloping down to the track and the river.

 

The train rolls on. It fills with more commuters as it goes. There’s little conversation. They’re all glued to ipads and iphones. There are a couple of men with fold-up bicycles. A lady applies her make-up. How does she do that on a moving train?

Small boats, in a haphazard crowd fill the channel between Benfleet and Canvey. Then the scenery disappears behind trees lining both sides of the track. Countryside emerges again briefly, exposing a small and lonely chapel, before the trees enclose us again. The next time they thin, we are in Basildon. Then more trees, behind which lie Legoland housing estates.

By the time we get to West Hornden, we are in farmland again. The cows are laying huddled together. That’s a good sign, I think. Nobody notices. They are engrossed in their electronic equipment.

Urbanisation and The District Line begin as we arrive in Upminster. We follow it to Barking and as we pull into the station, so does a tube train. Its driver sits relaxed, with his sleeves rolled up and the door wide open. I wonder what Health and Safety would say.

A short way after West Ham, the two lines separate. If I look one way, I can see the red, whirly monstrosity that is the Orbit. On the other side is the distinctive Canary Wharf building. A canal winds between the blocks of flats. The Docklands light Railway joins us at Limehouse.

Then we are at Fenchurch Street and everyone scrambles to get off.

The Moat is now full

It’s Armistice Day and the last poppy is laid in the Tower of London moat. It is now full. Thousands of people have come to see and pay their respects. Officials direct them through a one way route round the edge of the sea of red. It was a peaceful crowd that moved slowly. As much respect for each other as for what the display of poppies represented.

We walked slowly across the rampart over the moat and under the poppy arch into The Tower. At the same time, a ship’s horn sounded. The enormous and tall vessel sailed through the lifted ballasts of Tower Bridge and past the Fortress.

 

 

The sun appeared. It shone through the poppies rising above our heads. Those below glowed with pride. We walked though and my mobility scooter bumped along the cobbles. It was like being on a roller-coaster. “Hope you’ve got good suspension on that” called a man we passed. “I wish,” I replied, as I continued my bone-shaker ride.

We looked through a cross shaped slit in the battlements. The poppies shone in contrast through the gap. Further inside there was an open area. The Tower had played a role in army recruitment during the First World War, and re-enactments were being played out in the courtyard. An officer wearing a uniform of the time was marching up and down. “This is where you join up”, he barked. “Ladies come over.” I laughed. “It works”, he said. “If the ladies come, the men follow.”

Later on, he was on the South Lawn opposite, instructing three new recruits how to march. He was a harsh task master.

We wandered around further. Outside Wellington Barracks, that house the Crown Jewels (the only building apart from the cafe that’s wheelchair accessible), was a guard standing in front of his little box. I thanked him for allowing me to take his photo even though I knew he wasn’t allowed to respond. In front of Chapel Royal of St Peter and Vincula, looking onto the Scaffold Site, was a Beefeater in splendid red and black uniform. Next to it, on the Tower Green, black Ravens were hopping about. It is said that if they leave the Tower, the Kingdom (or Queendom) will fall. Back round at the first courtyard, one was posing atop a cannon, as if to say “Look at me. Take my photo.” We all obliged.

On our way out, across another bridge across the poppy filled moat the scene was powerful. A sea of people standing along the edge of the moat, looking on. Behind them rose Tower Bridge. And below them, a swirl of red poppies.

The Last Post

A sea of red swirls around The Tower of London moat, contrasting with the green grass underneath and the stone walls at the sides. A tall wave of red poppies rises from those below to throw itself over the rampart to the entrance. It freezes midway. 

The poppies are an evolving exhibition to mark the centenary of the outbreak of the First World War. On 5^th August, the first full day of the UK having joined the conflict, ceramic poppies began to be planted in the moat. By Armistice Day on 11^th November, there will be 888,246. Each representing a member of the British and Commonwealth armed forces who was killed. 

The usual bustle around the Tower is subdued as people gaze in wonder and reflection. Even the nearby busy traffic sounds muffled in respect. 

Every evening as the sun goes down, there is a roll of honour of the names of some of the dead, followed by a lone bugler playing “The Last Post”. Next to me was a lady who was there to hear the name of her grandfather’s cousin. “Your grandfather came back?” I asked. “Yes he came back. But his cousin didn’t.” She paused. “He was a prisoner of war, actually,” she said. “He was in a camp and when he died… it wasn’t because of the war. He died of a kidney infection in 1918”. 

Another man joined the small gathering crowd and enquired “Is something going to happen?” I explained why we were all standing there and the significance of the number of poppies. He let out a slow breath. “I must write that down,” he said. “How many was that?” “888,246.” 

Dusk approached. A Yeoman of the Guard and a Bugler walked to the centre of the moat. The crowd grew silent. Surrounded by a sea of red poppies, a single light shone on the Beefeater as he began to read the names of the fallen, their rank and regiment. Name after name was spoken. The silence increased. The list continued, page after page. With each identity, the enormity of the moment, and the silence, gained weight. Four men in succession had the same surname. Were they brothers? Father and sons? A few names further on, the same surname again. On and on the roll of names flowed, until approximately two hundred had been said. And yet it was a pinprick in the total. The sun had set. It was dark.

 

Then came the famous words by Robert Laurence: 

They shall not grow old, as we that are left grow old.

Age shall not weary them, nor the years condemn.

At the going down of the sun and in the morning

We will remember them. 

“The Last Post” cried in anguish. And the crowd dispersed silently.

 

 

The Longest Pier in the World

As I entered the pier, it stretched out before me into the distance. Usually I take the train to the end. What on earth possessed me to walk? I’d committed myself now. There was no going back. I had to keep going to the end, all 1.34 miles (or 2.16 km) of it.

I began to walk, leaving behind the screams from the theme park rides of Adventure Island. Below me, through the slits between the wooden planks, was mud. The tide was out. Those cracks of sea beneath had frightened me as a child.

It’s quite a narrow pier, just a railway track and footpath wide. There’s not much room to pass. I met a group of schoolchildren in their uniforms, chattering away and all holding worksheets. Their teachers were following behind. I was now over the water and had reached the first shelter. They are a welcome relief when it’s windy. It blows twice as strong away from the shore. But today it was gentle even out here. It was a good day for walking the pier. Lots of other people had the same idea. Families walking out, people walking back. We nodded to each other as we passed, or said hello.

I kept passing a family with a small child as we each stopped to take photos. A train trundled past. A seal popped his head up to say hello, then disappeared again. There’s a colony of them living on a sandbank in the middle of the river. If you have binoculars you can see them from the cliffs.

A sign fixed to the rail told me I was ½ mile from shore. Oh goodness. I’m not even halfway yet. Another shelter. This one had a fisherman casting his line. “They’re not biting today” he said. “There’s not enough wind to chop the water.” Another train went by, in the other direction this time. Further on more fishermen. Another sign. This one told me I was a mile from shore and I’m still not at the end. I’d forgotten how long this pier is.

Finally I got there. I needed a cup of coffee from the new cultural centre. There’s not a lot else at the end of the pier anymore, since the last major fire in 2005. “There have been five fires in the pier’s 184 year history”, the lady in the RNLI shop told me. “There’s a small museum at the shore end telling you all about it.” Based at the end of the world’s longest pier, Southend Lifeboat station is the busiest in England. The Thames Estuary is a busy waterway and treacherous to sail in. I always buy something from the shop. It feels important to support the Lifeboats.

I took the train back to shore. I was tired but I had enjoyed being a tourist in my own town.

Month 6 of the Trial

Not long after I returned from my big holiday, it was time for my Month 6 Assessment. I seemed to be on a mission that morning. I caught the train before the one I needed to and arrived at the Clinical Research Centre ahead of schedule. It was still half-an-hour after my appointment time before I went through. They seemed to be somewhat disorganised and less co-ordinated than usual. Yet another new nurse had taken over my care.

The consultant in charge flew in. He did a quick check of my skin, heart, felt my stomach, glands, whatever and listened to my lungs while I breathed in and out. Have I had any adverse effects, any new symptoms? No. Then we’ll continue the study. Then he flew out again.

Instead of going for my motorway vein when she took my blood, Ann went for a smaller one that seemed deeper. It protested, and she ended up in the motorway anyway. From my viewpoint that was much better and hurt much less.

I got myself in a right muddle with the maths test and kept losing track of the numbers. The pegs in the nine-hole peg test went flying across the room, although that was the doctor’s fault, not mine. I might be right-handed, but as usual my left hand was much steadier. Or should that be tremors less? In fact it was four seconds faster, which I’m sure was a bigger difference than last time.

And I’m sure he stabbed me harder than usual with the pin prick test. I yelled “Ouch!” a lot. Bizarrely, the places where I yelled “Ouch!” were the same places where I could feel nothing when the vibrating tuning fork was placed there.

My diary was photocopied and my remaining drug returned and exchanged for the next three month’s batch. I was all done. Or was I?

The next day, I received an email from the Clinical Research Centre. We forgot to do the 25ft timed walk test. Can you come back?

Flamingoes in Kowloon Park

It was a heavy downpour when I woke up, but after lunch it cleared enough to venture out. I wandered along to Kowloon Park. The concierge had told me it was wheelchair accessible. It was…very. Inside was a haven of peace from the city. If you listened carefully, you could hear the traffic, but only just. Dotted about were kiosks to buy coffee and lots of places to sit.

There was an “Avenue of Comedy” full of statues of the comical characters. In another square was a collection of odd shaped structures. There were three large swimming pools of different shapes and depths, all connected. Best of all, was a lake with flamingos. There were also swans with black necks and lots of ducks and fish. But it was the proud flamingos that caught my imagination.

I made it to the harbour this time. I didn’t take a trip around it because none of the boats were wheelchair accessible. Neither was there anywhere safe on the quay where I could leave my scooter. But it didn’t matter. The cloud was so low I probably wouldn’t have seen a lot anyway.

When it got dark, the Temple Street Night Market was buzzing. It was full of what my mother would delicately call “tat”. But I did find some purple ear-phones for my Ipod. There were outlets with buckets of live seafood, waiting to be freshly cooked. I declined to experiment, but every one of them was full of customers.

I thought I’d treat myself to a cocktail for my last night. While I was trying to decide whether I wanted a second, or should I go upstairs and pack. The waitress arrived with another glass. “I didn’t order another cocktail,” I said. “It’s happy hour,” she said. “It’s buy one, get one free.” How could I refuse?

My plane home got lost in Hong Kong airport. It had arrived early morning and had been parked at a distance gate, until its departure that evening. Only they seemed to have forgotten where they parked it.