The Story

Tuesday 24 May: 4 years 8 months on … DEUCE!

I started blogging in October 2009.

It was a way of communicating my activities and my state of health to my friends and family. The word “blog” comes from the contraction of the two words “web” and “log”. A blog is simply a “web log” of one’s activities – a sort of electronic diary available for all to read.

So my writing of blogs had two goals: one was to be a diary of my last days on this earth; the other to raise awareness about my illness, corticalbasal degeneration (CBD), a form of motor neurone disease and a virtually unknown syndrome when I became ill now four years and eight months ago.

In the beginning, the blogs flowed fast and furiously. My brain’s ability to work with figures was replaced with a new-found ability to write prose. I have written some 160 blogs to date, and they have been read online by more than 22 000 “hits”.

In the last month or so, the writing has not been so easy or so regular. My ability to type has been severely restricted, and I have been making use of voice recognition software to assist me. However, I now find that my cognitive abilities are also declining, and it is not always easy to put into writing what is going round in my head! My ability to get around and to do the so many things that I have written about in the past has also become more restricted.

So, the last few weeks have become even more challenging. However, it is even more important now to stay busy and to keep my mind occupied as much as possible.

That’s easier said than done: my hands are affected and so manual work is difficult; my short-term memory and concentration is affected and so reading and movies are problematic; my ability to multi-task and order is affected, so organising things are not easy. (The Gilbert and Sullivan production of OKLAHOMA last week tested my skills in that regard and I think I have now met my match!) Even my ability to sit has become a problem – the spasms that I get down my left side become more pronounced when I sit for a while.

It has however allowed me more time just to relax and to watch TV – normally CNN or Sky News. It has opened a whole new world for me – and what a world and global village we live in!

I have written before about living in moving times!

Over the last period of time, I have witnessed the earthquakes in New Zealand and Japan and the tsunami in Japan. I know no-one in Japan but I have a sister in New Zealand.

Then there have been the floods, the droughts, the fires and the tornadoes. Just yesterday, we saw the death and devastation in Joplin, Missouri, USA caused by a tornado that is reported to have killed more people than any other before it. Our family was in Joplin in 2001 when we visited the USA, and my American “family” live close by in Cassville and at Table Rock Lake, Missouri.

There has been the Arab Spring – the uprisings in the north of on our own continent. First, there was Tunisia, then Egypt, now Libya and Syria and all the other smaller Middle Eastern countries. There is the whole Israeli / Palestinian challenge that has raised its head once again – and, as I write, the Israeli Prime Minister is addressing the American Congress, in a room that I have visited in the House in Washington DC.

There were the northern hemisphere winter snowstorms and the Ash Cloud this time last year from the Icelandic volcano Eyjafjallajokull that disrupted life around the globe. Just one year later, we have that volcanic ash cloud problem all over again – almost de je vu.

The upheavals of the world remind me of the challenges that we face in our personal lives. They come at regular intervals to us all, and they provide the rungs that raise us higher and the stepping stones that make us stronger.

But, as in our personal lives, we also experience the pleasant things in our world.

Recently, we spent much time watching the Royal Wedding. I was in London in June 1981, just before Charles married Diana. The hype then, as now, was unbelievable. 

Then there was the recent visit of Queen Elizabeth II to Ireland – a country much like our own in that it has had its fair share of problems and challenges. I had the pleasure of visiting Dublin in November last year, and it surprised me that I had visited that City before the Queen (I wondered if she may have ever gone there before – incognito?!)

The history of Ireland is so very similar to that of South Africa. And the peace that they now experience there, ratified in their Good Friday Agreement signed on Good Friday, 10 April 1998, can in part be ascribed to our own lessons learnt that led to the birth of the New South Africa on 27 April 1994. (Our own elections last week were testimony of the peace that we now enjoy.)

I enjoyed tracing the Queen’s steps through Dublin as she visited many of the places that I had the privilege of visiting last year: the Garden of Remembrance, Croke Park, Dublin Castle, the Liffey River, and, of course, the home of “The Black Stuff”, the Guiness Brewhouse! Her steps in the summer were, of course, very different to mine in the heavy snowfalls of last December.

And, I have enjoyed watching the President of the United States, Barack Obama, visiting Ireland (and tasting the Black Stuff) and London. And, indeed, even as he can trace his roots to Ireland, I can trace my roots to Ireland (on my maternal grandmother’s side) and to Wookey Hole, Somerset, England (on my paternal grandfather’s side).

When our family visited Buckingham Palace in 2001, Sean (then 9 years old and clinging to those famous railings that surround the Palace) asked why SHE needed such a large house. Well, tonight as the Queen entertains 171 guests to dinner (with 2000 knives and 5 wine glasses per person!) I can now see why SHE needs it!

Ten years later, our pleasant things: we celebrated Sean’s nineteenth birthday last week; we saw, on Tuesday, the production Oklahoma (where I went to school in 1975) and yesterday, I made an amazing discovery.

The ongoing spasms that I have been getting, especially when seated, appear to come from the fact that the gluts in my left buttock have atrophied. When I sit, I am either affecting the circulation or a nerve. And, if there is no weight on my left bum, then there are no spasms! How best to sort this out will be the challenge of the next week … the story continues.

Heading South – Going Home

A Change is as Good as a Holiday (Part 5)

Sunday 19 December 2010: 4 years 3 months on …

(As I write this, the snow once again pours down onto Europe and disrupts traffic all over again!)

Saturday 4 December – Sunday 5 December 2010

Saying goodbye has never been my strong point. I usually choke up – and then don’t say the things that I intended to say or should have said. And, over the last four years, this has been even more so. I sometimes think that people must think that I am extremely rude because I don’t say goodbye properly!

The truth is that despite talking to myself beforehand and getting myself ‘strong’ for the occasion, I am still not able to control the waterworks! And then, I just rush off, and let the water flow out of sight …

 This time was no different.

When the taxi arrived to fetch me at 11h00, just minutes after being booked, I said my brief goodbyes to Grace, Jake and Mike, almost as if I was just going down the road to do the morning shopping. But the tears started rolling, and did so almost all the way to the airport. The taxi driver chatted away, talking about everything from the FIFA World Cup to the 90 billion Euro bailout that Ireland had just received from the European Union and the IMF. All he got in return were curt one-word responses and the occasional muted sniff! Strange African fella, he must have thought!

At the airport, I asked to leave on an earlier flight – not because I wanted to get out of the place, but because missing my flight to Johannesburg at Heathrow would have complicated matters for me. Their was a brief window of opportunity for flights to leave Dublin – the snow had stopped, but it was forecast that the fog would roll in from the northwest and more snow was inevitable!

I spent my last Euro coins on a packet of chips, and then watched them spraying the ice off the wings and fuselage of the plane that would carry me back over the Irish Sea to London Heathrow – Flight EI 168 scheduled to take off at 14h10.

I saw the fog rolling in from the west. I was right in the front, seat 2A, at the window and by the time we started moving, the airport was shrouded in a blanket of fog. There had been so many stories of people getting on and off planes because of cancelled flights, that I became anxious that the plane should become airborne.

 Luckily, the flight was only slightly delayed because, once again, we had been requested to delay our arrival at LHR in order to fit into their time slots. But, up we went, through the grey pea-soup fog, and then, as we banked and turned eastward, almost like Someone opening the curtains, there below me lay the Emerald Isle. As far as the eye could see, it looked like a giant quilt blanket – white squares of snow surrounded by dark leafless trees. It was the most awesome sight, and will remain with me as my parting gift after a most special week.

 Slightly late, at half three, we landed at Heathrow. My bag had been checked through to Johannesburg, and Flight SA237 was only due for boarding at 20h05 and to leave at 21h05. So I used the time to explore the aged Terminal 1 (the original Heathrow, due for demolition and rebuilding over the next 10 years). SAA and Aer Lingus use terminal 1 and I was specifically booked like that in order to cut down on my moving around unnecessarily at Heathrow.

I found a free internet kiosk and proceeded to catch up on emails and Facebook. Then, a trip to the toilet almost ended in disaster. Travelling alone always means that such a trip entails having to carry all your belongings with you.

I put everything down on the floor, and picked it all up when I left. Or so I thought! After about fifteen minutes of browsing through WH Smith, I suddenly realised that my cell phone was missing. I rushed back to the toilet and there lay my Blackberry on the floor, just where I had left it! This was definitely not Africa! (As it was, all I lost in the two weeks was one of my gloves at Twickenham, so, despite my concerns, my mind had worked well for me over the fortnight.)

Seat 39G was on the aisle, and I had open seats next to me, which looked promising for a good night’s rest heading back over Africa. But during supper – chicken or beef yet again! – I got chatting to a young guy, Jared Golden, across the aisle.  He is from Cape Town (went to school at Herzlia) and works as an analyst in the financial economic applications (FEA) team at Barrie and Hibbert  in Edinburgh. He was headed home for the holidays.

“My broader FEA activities include quarterly real-world model calibrations, contributing to research and development regarding modelling and calibration and improving calibration tools. I provide support for various Barrie & Hibbert products (software and scenario sets, etc.) and services (reporting, consultancy, etc.), which includes providing financial modelling assistance to clients, advising on calibrations and providing assistance on economic interpretation of model output.”

Well, we chatted to such an extent that the woman in front of us complained that we were making too much noise, and so he came to sit next to me. We chatted almost until breakfast time at 05h00 (GMT – now 07h00 SAST), and so little sleep was had.

Landing at Oliver Tambo was ten minutes early, but because of that, they had not organised the gateway in time. (Welcome home!)

Once the door opened, I got through customs quickly – no stopping of anyone! – and headed off to terminal B to meet Graeme and Belinda for breakfast. A short catch-up and chat and then it was off to Port Elizabeth, flight SA417 due for departure at 13h05. Before then, welcome home yet again: at the last moment, we were moved from the advertised boarding gate to another, and then, when I checked in, I was asked to stand to one side before boarding. No reason was given, and I muttered whilst everyone else boarded.

Right at the end, I was told that I had been upgraded to First Class (from 15D to 2C!) and so, I arrived home in style (even had lunch served in china plates with proper cutlery – but still chicken or beef!), and was the first passenger off the plane in Port Elizabeth.

[Lesson #5 , for me, is ‘DON’T MUTTER WHEN THINGS APPEAR TO GO WRONG – YOU MAY JUST END UP IN A BETTER SITUATION THAN YOU ORGINALLY ANTICIPATED! THE CLASSIC LESSON: EVERY DARK CLOUD HAS A SILVER LINING!]

So, two weeks after leaving Port Elizabeth Airport, on Sunday 5 December, Boeing 737 Flight SAA 417 from Johannesburg touched down at that same airfield, right on time at 14h45. The wind was howling at 60kph and the temperature was 24 degrees.

I bounded across the concourse, no tears, no limp, mind clear and holding my heavy duty Levi jacket in my right hand and my travel bag in my weaker left hand!

Pera and Phillip had come to fetch me. As I waited for my suitcase to come off the carousel, I pondered about the two weeks and the wonderful privilege that I had just experienced.

My sincerest thanks and appreciation go to all those people who I have mentioned in these blogs “A CHANGE IS AS GOOD AS A HOLIDAY” for having made this memorable trip possible.

To Grace Carswell, I shall remember our all too brief conversations in your beautiful new kitchen and home, with great fondness. Your Irish food was magnificent, and your hospitality was superb. I wish you and Mike Godspeed as you continue on your life’s trip with your wonderful young family of Jake and Chloe.

To Mike, a mere ‘thank you’ seems so insufficient. Who would have thought, when we first met in 1984 at Grey High School, me the teacher and hostel master, you the pupil, the Head of House, the Senior Student Officer and the 1st Team rugby player that, twenty six years later, we would meet up in Dublin, Ireland, thanks to your friendship and generosity?

You have given this (not so old) man two very special weeks in his life and the most wonderful memories.

I hope that, one day, you will put up a picture of me with all those famous people that grace your practice walls! At least then, a part of me will remain in Ireland.

Another lesson I have learnt this fortnight from the Greatest Teacher of all, is that “It is more blessed to give than to receive.” ST Francis of Assisi said “For it is in giving that we receive”.  As Christmas 2010 approaches rapidly this week, may we all learn this great lesson of Life.

Upon arrival in Dublin, the customs officer had asked me what my purpose was in Ireland. I responded “holiday”. We all have a purpose upon our arrival on this planet Earth but I don’t think it’s a holiday! At this Christmas time, I pray that we each may find our purpose, and achieve that purpose, in the time that we are given to spend here and to explore our planet and temporary home.

 

“And if there’s going to be a Life hereafter, and, somehow, I know, there’s bound to be

I will ask my God to let me have my Heaven in that Isle of Green across the Irish Sea… “

As the daylight fades, the twilight approaches and the shadows grow longer. But the shadows have not yet overtaken me.  My body grows wearier, my mind begins to falter and my ability to do the little, normal everyday tasks becomes increasingly affected. I am becoming increasingly frustrated.

Gloaming is defined in the dictionary as that time after sunset and before dark. It is that time when the shadows get longer and longer and then disappear completely. It’s not completely dark yet, but there are no more shadows. Gloaming separates day from night and from the new Dawn.

Please forgive me for the times when I ask that my gloaming period should be short. 

Forgive me when I ask my God to allow me to leave this earth on an earlier flight, not because I want to leave this beautiful place that offers so much, but because I look forward to that day in Paradise when I will, once again, be able to do those everyday tasks and be free of the weariness and discomfort.

 It is often at the end of a busy day, in the twilight and gloaming period, that one experiences the most peaceful and beautiful and memorable times, and sees the most majestic, almost-painted, sunsets and seas and skies. (Just go and sit at Sunset Rocks at Cape St Francis at sunset.)

My trip to England and Ireland has been just that!

I extend my heartfelt thanks to everyone who made this Twilight Trip possible.    

 

Ta Athru chomh maith le Saoire (Cuid 4)

ED is in IrElanD

Ed Is in Eirinn

Ta athru chomh maith le saoire (Cuid 4)

A Change is as Good as a Holiday (Part 4)

Friday 17 December 2010: 4 years 3 months on …

Sunday, 28 November 2010 – Saturday, 4 December 2010

Sunday morning was packing up and heading off for Heathrow Airport at 10h30 to meet up with Mike and Grace Carswell, and our very short flight of 55 minutes over the Irish Sea to Dublin. But flights into Dublin were delayed (we would see why later!) and we only left LHR shortly after 15h00.

Mark and Janet Stanborough dropped me off at Heathrow and when I checked in, there was no record of my booking. Mike had flown over to London for the Old Grey dinner and when I called him, he and Grace were on their way to the airport. He gave me a new reference number and so I tried to book in a second time. This time, the flight had not opened for checking in yet as a result of the delays. We decided to have breakfast instead.

Third time lucky got me checked in. The Stanboroughs left and I headed off through customs. This time, it was far more thorough than the previous time in Johannesburg. Shoes off, belt off, wallet out, cell phone out, but still the machine kept beeping.

Eventually, it proved to be a paper clip in my shirt pocket. I had put my Euros (for Ireland) in my top pocket and a paper clip was holding them together! Paper clip dumped and Euros into wallet got me through the check point and into the holding and shopping area for flights to the Republic of Ireland.

Grace and Mike arrived, and we waited with hundreds others for flights to Ireland – some had been there since early morning.  Mike knew a number of people heading back and he introduced me to some, including “Louis”, Alan Lewis who had refereed the rugby game between the All Blacks and Wales in Cardiff the previous evening.

When Aer Lingus Flight EI 163 to Dublin eventually took off, we headed west and north. I was at the window and was able to see the white snow covered hills and mountains of Wales. Then the Irish Sea and then the east coast of Ireland and the city of Dublin. Mike gave me a running commentary of the coastline and pointed out his home suburb of Blackrock and other landmarks.

Failte go dti Baile Atha Cliath (Welcome to Dublin) – the name Dublin is derived from the Irish name Dubh Linn, meaning “black pool”.

As far as the eye could see, the Emerald Isle was not green, but snow white!

It had evidently started snowing in Dublin on the previous Friday evening. Mike commented that in his twenty years in Ireland, he had never seen so much snow in Dublin in November. Little did we know what still lay ahead of us weather-wise!

As a SA passport holder (and no visa required for the Republic of Ireland, I moved through a different queue to Mike at customs. No stopping to search me this time, but the officer asked for the purpose of my visit and when I would be leaving.

“Holiday”, I said, and he graciously offered me, and wrote into my passport, more time in Ireland than was needed. It almost became necessary to have that extra time, as we would find out later.  

Mike specialises in treating sports injuries and counts many famous Irish sports people amongst his clients. The numerous photographs that decorate his practice’s walls are ample testament to this, and a google of his name on the internet provides further evidence of the high esteem that he is held in Dublin.

Louis – Alan Lewis – was Mike’s first patient on Monday morning. He had asked me to come and chat to him. So after crashing into bed on Sunday evening, I dragged myself into the treatment room at 7h30 on Monday morning. Whilst he lay on the table, being pushed and prodded by Mike, and in between the ooo’s and the aaaa’s and some other choice words, Louis and I had a conversation of sorts! (Later in the week, I also had the privilege of meeting Irish rugby players Johnny Sextant and Leo Cullen.)

This week was different to the last in that I was staying in one place and was going to be a tourist on my first visit to Dublin.

Dublin is a city of some 1,5 million people and is on the east coast of Ireland at the mouth of the Liffey River which flows from west to east through the city. Similar to London and the Thames, the city lies north and south of the Liffey.

I was in Blackrock (An Charraig Dhubh), a suburb on the south coast. A train service, the DART – (Dublin Area Rapid Transit), runs along the coast from the northern suburbs, through the centre city and then down the coast through the southern suburbs. (For those who are familiar with Cape Town, it’s a similar set up to the rail service that serves Cape Town and goes down the Cape Peninsula coastline through Muizenberg, Fish Hoek, Kalk Bay and Simon’s Town.)

A walk of about a kilometre through the downtown area of Blackrock got me to the station, right next to the sea. There is a massive tidal difference between high and low tides – the water would either be lapping up to the wall right next to the railway line, or else a vast expanse of sand (covered in snow in areas) would meet the eye.

From Blackrock station, it was a mere ride of some twenty minutes north through six stations (including Lansdowne Road (Bothar Lansdun) station which is under and serves the new Aviva rugby stadium) to the seventh station Tara Street in the city centre.

From there it’s a short walk westwards along the south bank of the Liffey to O’Connell Street, the widest and the “main road” of Dublin that runs north-south through the city. I started my sightseeing there – but as more and more snow came down, I opted for a green bus tour that took me on a circular trip through the city. It gave me a good overall perspective and of, course, there are always the interesting titbits given by the tour guide in the most beautiful of Irish accents.

 As the week progressed, the snow continued falling – it moved from the most snow in November to the most snow ever! First it came from the northeast on the weather system blasting its coldness from the Arctic, then it came from the northwest blasting even more coldness from Iceland and Greenland. The temperature moved between a low of -11C and a high of 0C.

As the beautiful fresh white crunchy snow lands on the frozen ground, the bottom layers of snow become ice. The conditions become treacherous underfoot, cars and buses stop moving, the train system slows down and stops on occasion and walking – sliding! – becomes an art. Some of the main routes are kept open by throwing salt on the snow. Soon, the salt reserves dwindle and they have to mix grit with the salt to make the supplies last longer. The roads start looking like a giant black slush puppy.

The city is grid locked with vehicular traffic. The airport shuts down. The joke of maybe not getting out on Saturday starts looking like a reality! But that’s Saturday – don’t worry about things that may never happen!

In the meantime, I am determined to see as much as possible. So with snow flakes pounding my face and taking careful steps to avoid slipping on the ice, I manage to see (all) and visit (some)of the sights, amongst many others:

The Millenium spire, the GPO, Trinity College, Molly Malone’s statue, Oscar Wilde’s house and memorial, the Georgian homes, St  Stephen’s Green, the National Gallery and Museum, the City Hall, Dublin Castle, Christ Church Cathedral, St Patrick’s Cathedral, St Catherine’s Church, the Guiness Storehouse, Wellington Monument, Phoenix Park, Kilmainham Gaol, Grafton Street, Dvblinia (Viking/Medieval Exhibition), Aras An Uachtarain (the official residence of the President of Ireland), Teach Laighean(Leinster House) – the building housing the Oireachtas, the national parliament of Ireland.

Each of these places has a unique story and place in Irish history and society. It interested me how many parallels there are between our own country and Ireland. And so many wars fought (all against England, except one – a civil war between the Irish themselves!).

Something like 45% of the Irish population is under 25 years old – so many Irish have emigrated over the years that they consider their people as one of their biggest export commodities! Then, of course, there’s the other export commodity, Guiness, Ireland’s No 1 Tourist attraction. The Storehouse is the highest point of any visit to Dublin, both figuratively and literally, as Gravity, the Guiness Storehouse Bar in the sky is the highest point in Dublin City and has the most amazing view of the city.

 This commodity also proved useful when the walking got too much and respite from the elements was required in one of the oh so many pubs that grace the Irish landscape. And no better place than Temple Bar which is the home to Dublin’s cultural quarter and touristy pubs.

With the friendliest of people, duo’s singing Irish music, Irish stew, hot fires and cold Guiness – this surely was close to being in heaven! One afternoon, I got stuck with Emile Phelan, a plumber from Jersey who was visiting his Mom in Dublin. We had many “just another” – just the one for the road home! It became a long and winding and slippery road!

 No wonder in the folksong Galway Bay, the singer croons

And if there’s going to be a life hereafter

And somehow I know there’s bound to be

I will ask my Lord to let me make my Heaven

In that Isle of Green across the Irish Sea!

I can just imagine the festivities of Dublin and Temple Bar when the weather is more favourable!

One day, after spending some time acquainting myself with the Blackrock village, I took the DART train south to its furthest point at the coastal village of Greystones, and also stopped off at Dun Laoghaire(pronounced Dun Lary). There are some magnificent coastal scenes along this route, and I can imagine that these must be extremely busy areas come the summer months.

And talking of pronounciation – you will have noticed above that Ireland is a bilingual country and most everything is tagged in both Irish (first) and English. I tried time and again to understand the announcements made on the train, but I’m afraid it was often not easy on my newcomer’s ear!

Besides the weather, I also had to deal with a cellphone that did not work and the lack of internet connectivity. I felt quite isolated from the rest of the world. The technicians could not get to the house to deliver a new modem, and as for the cellphone – well, despite spending time with Vodacom in Port Elizabeth before I left to ensure international roaming, my phone would not work in Ireland. (I had deliberately gone to see them as I had similar problems when I went to the USA in March 2007).

I spent some hours at various Dublin Vodafone outlets, but to no avail. The last one I went to put a call through to Vodacom enquiries in SA, but after listening to ‘Scatterlings of Africa’ for almost 45 minutes and no reply, I gave them up as a bad job! (No wonder, I thought, we have become scatterlings of Africa when a multibillion conglomerate can’t even answer its phones!)

(On returning to SA, I called their head office (a few times!) to complain. Well, still not much more luck other than being thanked for bringing the problem to their attention and advising me that, despite their previous advice to both Pera and me, they did not have a roaming agreement in Ireland that would allow my contract package to work there!)

Despite the communications problems, I was still able to do our weekly AlgoaFM radio show (via landline) with Lance du PLessis from my bed in Dublin on the Wednesday morning – it was billed as ‘ED is in bED’!

Too soon, the week was coming to an end. On Friday evening, Mike, his brother-in-law Barry and I went to the local pub in Blackrock to say our last goodbyes to each other and to that Irish institution of pubs and Guiness. (A pack of Guiness that I bought at the supermarket for home use was left on the outside porch because it was colder there than in the fridge!)

The snow continued till Friday, the airport re-opened, and I was taxied there early Saturday morning in order to get back to Heathrow on an earlier flight before the weather turned foul again.

 It was time to say Beannacht and Sian a fhagail – goodbye and farewell – and to begin the journey southwards home.

Lesson #4, for me, was “Despite obstacles in Life, you can still have a darn good time!”