Frankly I Don’t Give a Damn

©2013 Edward C. Lunnon

Tuesday 25 June 2013: 6 years 9 months on …

Physical: Deuce / Mental: Advantage ED

The month of June is International Motor Neurone Disease Awareness month and Friday 21 June – our winter solstice day – is also International MND Day.

The local branch of the MNDA of SA arranged an awareness breakfast on Saturday and on Friday the movie “I Am Breathing” was screened.

Ironically, I have NOT been breathing – at least not well!

Last weekend (15 June), feeling well, I spent time at the Patensie Citrus Festival. Friday night I visited Eppie and Lande Ferreira (with Matt Sexton, Kings coach, and his family) and I slept over at Pietie and Coba Ferreira (and braaied with them and ex Helshoogte boarder Corne Muller.)

Saturday morning, we did a tour of the Citrus packing sheds and then “did” the festival. Stalls, music, singers, beer tent, people from far and wide … I was humbled by how many people, even here in Patensie, recognise my voice from radio. It is a measure of how the message of neurological illnesses is being spread far and wide. I am most grateful to AlgoaFM for giving me the time each Wednesday for our programme “ED is in wED”!

I returned late afternoon to Port Elizabeth because we had a farewell dinner with the Stapletons – they have headed off to Thailand for the holidays!

Everything changed on Sunday morning – Father’s Day. I woke up with a cough and feeling grotty. For the first time in almost seven years since I have had CBD, I was also ill with something else!

I stayed in bed and wafted through the next few days being Father’s Day, Youth Day, Public holiday, long weekend, Monday, Tuesday … and whatever day it was. I am not quite sure anymore which was what!

I saw Dr Butters and he confirmed that I had bronchitis – the last thing that anyone with a degenerative neurological illness wants (bearing in mind that our chest muscles are affected, we breathe shallowly and we eventually die from lung complications and illness such as pneumonia.)

For the first time since I have had CBD (seven years now), I have been confined to bed (other than when I broke my elbow some five years ago.)

It’s been a test of my resolve and a wake-up call of what lies ahead.

Watching the movie – the story of Neil Platt’s fight with MND – also did me no good. But in between, I went to listen to Elvis Blue sing at Grey, saw the public screening of the movie and attended the breakfast on Saturday. Alan Solomons spoke about the Kings rugby franchise – beating the odds – and it reminded me so much of the fight that we have with MND. Mandy Gurr, a local ex-theatre personality and singer who has fought the illness for some 15 years now also spoke (with difficulty but with so much courage). She leads where we still have to go, and what an example of courage and determination she sets for us who battle with so many different kinds of illnesses that life throws at us.

“Raising awareness” is the term that we hear so often when we talk about illnesses of various kinds. Often the “raising awareness” goes hand in hand with “raising money” because most cases of battling illness go hand in hand with battling finances. Becoming sick becomes a financial battle as well! That’s often why we have these “awareness” days and functions.

But I have also come to realise that unless dread disease and severe illness hits us personally or our immediate family or close friends, then – quite frankly – we don’t give a damn!


We don’t prepare for it, we don’t care for it and we simply ignore it and hide it away. We live our lives as if it will never hit us – others yes, but not us.

It’s only when it comes like that “thief in the night” that we are forced to pay it much attention.

Hence, my motto, for those who have the gift of good health – LIVE.LIFE!

Last night, I went to listen to Prof Cyril Karabus speak about his recent traumatic experience in the United Arab Emirates (Abu Dhabi). (He had been found guilty on “murder” charges in his absence as a result of a young patient of his having died from leukaemia ten years ago when he did a locum there. Now, he was detained when passing through the airport on his way back to SA from a family wedding in Canada.)

In a moment, his life, and that of his family, was changed by the course of life!

I’m starting to feel better. It’s time to LIVE.LIFE again!


Madiba Magic

©2013 Edward C. Lunnon

Monday 24 June 2013: 6 years 9 months on …

Physical: Deuce/ Mental: ED

Madiba, we are told, is critically ill today. Our thoughts are with him and his family.

Exactly eighteen years ago, he stood at Ellis Park holding the Rugby World Cup aloft. The Springboks had beaten the All Blacks and were the 1995 World Cup Champions.

It is considered one of the turning points in the building of our fragile new democracy.

Pera and I were at the maternity ward of St George’s Hospital here in Port Elizabeth. We spent the day there!

It was a turning point in the life of one Phillip John Lunnon. Pera was 25 weeks pregnant with Phillip, but he had decided that today was the day. No more waiting for September!

Thanks to skilful work by the gynaecologists, thy managed to keep him in there … until on 7 July 1995 he was eventually brought into the world by Dr Ivan Berkowitz at 27 weeks!

He – all 1,3kg of him – lodged in an incubator at St Georges for about a month until his homecoming.

We will celebrate his 18th birthday in two weeks time. He is now our tallest family member at 192cm!

We are truly blessed with two wonderful sons.


I am Breathing


Thursday 20 June 2013
6 years 9 months on …

Advantage Bronchitis!

It is somewhat ironic that, in this week of the release of the movie I AM BREATHING, I should get bronchitis – for the first time!

I am now in day 5 of not being well all started on Father’sDay – Sunday. Hopefully I will be well enough to attend the premiere screening of the movie tomorrow.

In the meantime, I have personally watched the movie. It is not for the feint-hearted. And for a few moments I have allowed myself to think ahead of where this CBD takes me and my family. I get scared, but it kickstarts my coping mechanism. I won’t allow myself to dwell too much in the future.

There is still too much to do in the present – so I can’t waste too much of it.

A few of us in this life are selected to be the Neil Platts, some are selected as carers and helpers; and for the rest – the public: you become those people that we depend on to fight our cause and to help RAISE AWARENESS of our situation.

I hope to see you at the premiere tomorrow at 11h30 Old Grey Club Port Elizabeth.


Amigos Para Siempre (Friends For Life)

Wed 19 June 2013
Advantage: common cold

I had a cold. I now have bronchitis. That’s not good news for someone with CBD.

So Charlie and I have spent the day in bed – watching cricket: SA vs England.

Charlie’s clearly bored! So am I – my brain remains too active and sharp. It just can’t control my body anymore. So my body is failing me.

Charlie’s body is fine. His brain controls his movements well. Maybe his brain isn’t as sharp as mine!

Guess we could pool our resources … Friends for Life!

MND Day: Fri 21 June: “I am Breathing” Movie Premiere in Port Elizabeth

See you on Fri at 11H30

BrainStorms - Ed Lunnon's Blog

This premiere will take place at the Old Grey Club Lennox Street Port Elizabeth.

Time 11H30 to 13hoo

Cash Donation / Cash Bar / Club Lunch Specials available


“It’s the disease that most health professionals say they’d least like to get. It’s the most cruel and undignified end.” (Louise Platt, The Plattitude blog, 2008)

This year, on 21 June, in a wee village in Scotland a small group will get together to watch a film about a man who dies from Motor Neurone Disease (MND), also known as ALS or Lou Gehrig’s disease. At the same time, in a cinema in Finland, people are arriving from all over to see the the film, I AM BREATHING. In Russia, in the UK, across America, in Brazil, in India and across the world others have volunteered to screen the film – in village halls, schools, churches, sitting rooms, pubs, and…

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Cinderella: Fur or Glass Slippers?

©2013 Edward C. Lunnon

Tuesday 11 June 2013: 6 years 9 months on …

Game: ED

“Claim: Cinderella’s slippers were made of fur in the original versions of the fairy tale, but they became glass slippers in later versions as the result of a mistranslation.

Status: False.

This came up in conversation a few days ago, so I looked into it a bit. And alas, though mistranslation is not the culprit, it seems pretty clear to me that the slippers must originally have been fur, and turned into glass through a misunderstanding.

Snope’s discussion of the point is clear and well researched, as usual:

The standard explanation for Cinderella’s famous footwear is that it is the result of a mistranslation, someone having mistaken pantoufle de vair, fur slipper, for pantoufle de verre, glass slipper, when making an English version of Charles Perrault’s Histoires ou contes du temps passé avec des moralités (1697). (The title of Perrault’s collection — in English, Stories or Tales of Olden Times with Morals — also is known as Tales of My Mother Goose, after a line that appears on the frontispiece of the original, Contes de ma mère l’oye.)

The principal difficulty with the standard explanation is that pantoufle de verre appears in Perrault’s original text, so this is definitely not a question of mistranslation. Nor does it seem to be a case of mishearing, with Perrault writing verre for vair when transcribing an oral account, since vair, a medieval word, was no longer used in his time. (Vair, variegated fur, from the Latin varius, varied, also is a root of miniver, originally menu vair, small vair, which referred initially to the fur — perhaps squirrel — used as trim on medieval robes and later was applied to the prized ermine, or winter weasel fur, on the ceremonial robes of peers.)

Indeed, the original text of Perrault’s tale “Cendrillon ou la petite pantoufle” does use pantoufles de verre (“glass slippers”) not once but three times (see below), so it’s clearly neither a mistranslation nor a (simple) misprint. However, the argument against mishearing seems to me to be extremely weak. Though I’m not any sort of expert in the history of French, a bit of poking around on Gallica suggests that vair was still used to describe a glamorous and valuable kind of squirrel fur, in the context of talk about the olden days, quite a bit later than 1697. If the word had indeed gone out of everyday usage, then that creates exactly the sort of context in which a creative mishearing would be likely.”

From Language Log by Mark Liberman


Whatever; whatever!

My slippers are neither glass nor squirrel fur.

They are made from sheep skin and sheep wool. And they have lasted 26 years, having been given to me way back in 1987 by Jean Watermeyer of Doorndraai, Four Winds, Beaumont and the Standard Bank House all in Aberdeen and the district of Camdeboo!

They have walked a long way – sometimes an easy passage and sometimes a more difficult path.

Now, they are worn out and showing the wear and tear of a life well-lived.

They have now lived their life!

Quo vadis?

Who knows?

Is there a life hereafter for slippers – be they glass, squirrel or sheep?

Whatever; whatever!

Today I say goodbye to my friends of 26 years. We will go our separate ways. I shall miss them and no replacement will ever be the same.

Will our paths cross again? I really don’t know.

What I do know – I shall have fond memories of the road we travelled together.

Goodbye, my holy slippers.

Yours was a job that was well done, and it’s not about whether you lost or won the game – it’s all about how you played the game. You played yours well!

Now, your mission here has come to an end. You are tired and worn out.


No Turkey at this Thanksgiving

©2013 Edward C. Lunnon

Monday 10 June 2013: 6 years 9 months on …

Game: ED

Yes, we had no turkey!

But we did have Karoo mutton and lamb and chicken and eggs and chops and pizzas and red wine and Guiness and Castles and …. in fact, we had far too much.

However, this is Karoo hospitality and whilst we had too much to eat and drink, one can never complain about the Karoo hospitality that one experiences when visiting Graaff-Reinet! There is so much of it that one must be careful not to drown in it.

So this weekend resulted in a very unplanned and hurried visit to Graaff-Reinet. We haven’t been for a while, so it was great seeing the Karoo Clan – the Harris’s and their whole netball team of daughters (thanks for putting us up and for putting up with us!), the Wrights, the Bouwers, the Prices, the Beaumonts, Pieter and the guys at The Graaff-Reinet Club, the people at Polka, etc etc …. And apologies if I have not mentioned your name! (Please add it in a comment below and I will rectify my omissions!)

The reason for our hurried trip was indeed a thanksgiving: to give thanks for the life of Richard Clarke who died in the most bizarre set of circumstances on the national road between Graaff-Reinet and Aberdeen last week.

I first met Richard “online” when he started commenting on the blogs that I had written about fracking in the Karoo. Then, one day, we met face to face at that rather hospitable Graaff-Reinet (Mens?) Club where there always seems to be a reason for saying thanks and for saying “Cheers”!

Richard and I discussed numerous issues – he liked that and so did I, and sometimes it was necessary to have just another ale in order to cool down the intense debate!

And whether we met at the Club or on the street of Graaff-Reinet, there was always that blue-eyed smile and those deep words of discussion!

It was only later that I “discovered” that Richard was my radio interviewer, Lance du Plessis’s, cousin.

So it came as a shock last Wednesday, just as we were about to go on air, that Lance informed me of Richard’s death.

My sincere sympathy and condolences go to all his family and friends.

I shall miss his sharp intellect, his fine debating skills and that blue-eyed smile. I shall have another reason to drink an extra Guiness when next I visit the Graaff-Reinet Club.

Despite the sad circumstances of this visit, it was really great being back in the Karoo and seeing you all. And it was great to experience the drop in temperature from 22 to -2! (just a little exaggeration!)

A little of Richard’s writing:


People supporting fracking Shell for jobs should beware the wolf in sheep’s clothing.

I attended the meeting on fracking at the Graaff-Reinet Town Hall on Thursday 18 April and I did not hear anything new from Shell. It is almost two years ago that there was a massive meeting at the same spot and Shell still have no answers to the questions about water and about jobs.
There are no guarantees about jobs or water. There is no certainty that there will be jobs and no certainty that the water is safe and won’t be contaminated by chemicals used in the drilling process.
Shell SA is a part of Royal Dutch Shell which as a Multi-National Corporation is there to make money, otherwise it does not exist. Shell is not terribly worried about whether people in the Karoo get jobs or whether they can continue to drink their water.
There is shale gas in the Karoo and that can be turned in to money. This is the bottom line in any calculation or analysis by Shell. The same arrogance and even contempt for the Karoo locals was on display yet again as we were told that people concerned about chemicals are being “emotional”.
At question time this lack of respect was shown in the contempt with which one of the Shell delegation fobbed off a question around the recent article in the National Geographic about the ever present dangers in mining and hydraulic fracturing (fracking).
The presentation itself has not altered much in two years and Shell simply speak of job possibilities in the “multiple 1000’s” like a lottery which of course means that they are not sure and don’t want to be caught out.
The local community has become split over fracking with some irresponsible people encouraging the split along racial lines with whiteys anti because they don’t need jobs and blacks pro because they want jobs.
This is simplistic and done purely for political gain. The reality is that both of the groups should be together pressurising Shell to come clean on these issues of jobs and water.
There is no guarantee that there will be jobs and no guarantee that the groundwater will survive this Shell onslaught.
We have an elected government in this country whose job it is to protect the citizens of South Africa against this kind of invasion by a Multi-National Corporation that is richer than many countries.
An elected government that should controlling and monitoring the process by which rights to mine are granted. Controlling and monitoring the process that Shell seems to running on its own.
Shell at this meeting looked like a player in the game and the referee as well.
There is still a long way to go in this fight and people that support Shell and fracking because they believe it will bring jobs should beware the wolf in sheep’s clothing.


RIP Richard Clarke


PS >>>>> Happy birthday John!