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.