I Remember … (1)

7 years 7 months ill …

Physical: Advantage CBD / Mental Deuce

I remember …

The Motor Neurone Disease Association of SA meeting at Old Grey Club.

We had a very touching and different meeting. Kasturi Pillay and her children came down to PE from Durban. Her matriculant daughter gave a talk on “Living with dad and MND.” Kasturi spoke afterwards and shared much insight on her journey and her young husband’s acceptance of his condition, and what he taught them as he journeyed with MND until his death at age 44.

I remember …

Being doubled booked for therapy on Wednesday and getting a free session on Thursday, and forgetting to go for my weekly beard trim at Grant’s …

I remember …

Watching Grey play rugby against Michaelhouse, narrowly winning by 10 – 7,  getting caught up in the beer tent and just beating the rain downpour on the way home

I remember …

pig

Heading off to the Bathurst Agricultural Show, staying at the Settlers Cottage circa 1821, eating at the Pig and Whistle, the Earthen, Lara’s Eatery, the Bathurst Arms, the nurseries, craft shops, and thanks to Tanya for the hospitality. It was great meeting up with so many familiar faces again!

I  must remember …

The ABC, A Bathurst Country Affair is to follow in August over the Women’s Day weekend. More fun to come!

I remember …

As a kid, 6 April, a public holiday, was celebrated as Van Riebeeck Day – the day that Europeans under the leadership of Jan van Riebeeck from Holland first came to settle at the southern point of Africa. Bringing Christendom to Africa, some would say, and the beginning of our problems, others would say …

I remember …

Rushing home for the 10th Iron Man from Barry’s house at Villas Marinas on Marine Drive. I watched the first one back in 2005 when I was still well … how things have changed since then. And it got quite cool in the evening – watch the video:

I remember …

Oscar Pistorius taking the witness stand in his murder trial in Pretoria and  Shrien Diwani arriving at the  Cape Town High Court after fghting extradition in London for three and a half years now. I was in London in November 2010 when his wife was killed in Cape Town and the British press made South Africa look like a banana republic because of the murder!

shrien

I remember …

The Australians detecting the pings from the black boxes of the mystery disappearing Malaysia flight 370

20140408-225010.jpg

20140408-225115.jpg

20140408-225128.jpg

20140408-225141.jpg

Men (and Women) of Iron

©2012 Edward C. Lunnon

Monday 23 April 2012: 5 years 7 months on … Game CBD

Sometimes, even a man made of iron has feet of clay, and stumbles and falls. After all, we are all only human!

This past Sunday was the annual London Marathon. It’s of no particular significance to me other than that Londres is my favourite city in the entire world, and my surname resulted from the colloquial pronunciation of the City’s name by my Londoner forefathers.

 It was also the annual Spec-Savers IRONMAN ® South Africa competition held here in Nelson Mandela Bay. The athletes swim 3,8km in the Indian Ocean, then cycle 180 km in and around the Port Elizabeth countryside and top it all off with a marathon run, 42km along the streets of the city!

The triathlon starts at 07h00 on Sunday and the winners do it all in some eight and a half hours. The cut-off time for the rest of the masses is at midnight.  If one completes the challenge within the allotted seventeen hours, you earn the right to call yourself an IRONMAN ®!  

I remember being one of just a few people at Hobie Beach watching the very first IRONMAN ® contest in 2005. Lindsay Brown, who got me to run my first Knysna half-marathon in 2000 with him, and who had been the MD of Spec-Savers, was participating in the event.

But around this event has now sprung up a mushroom patch of other supporting events – Iron Girl (on Friday) and IRONKIDS® and the Vodacom Corporate Triathlon Challenge powered by AlgoaFM (held on Saturday) – and thousands of participants, volunteers, workers and spectators.

Of particular significance to me was the Corporate Challenge. It is also a triathlon, but just 10% of the distances of the IRONMAN® contest are involved. Either one, two or three people may complete the three disciplines.

Together with two other people who also have neurological illnesses like me, we were entering for this competition. Unfortunately, the interest in the race this year was so great that the organisers had to cut off the entries at 1500 people, and we fell on the wrong side of the cut-off point.

And, maybe a good thing, too!

The disease has been taking its toll and the last few weeks, I think, has seen more deterioration than in the preceding five years!

My body feels like a pot of stew simmering away on the stove. As you see little craters and movement appearing in the surface of the stew, just so do the muscles twitch and spasm in different areas all over my body. My left leg appears to have a short-circuit somewhere: it works and then stops – losing all its power. My left arm is difficult to lift beyond waist height. My mind is all over the place.

I have been laid low for the first time since becoming ill. No Stellenbosch for me this weekend (to see Grey First XV beat Paul Roos) and no beachfront to experience all the Ironman excitement. I have been confined to the house and to my room most of the time, and I have to guard against becoming a total recluse! This iron man also has feet of clay!

But don’t let me feel sorry for myself.

We were planning to participate in the Corporate Challenge to raise awareness of neurological illnesses. Yvonne Anderson has been extremely helpful in doing work with handicapped people and she arranged for me to see some people on Wednesday.

I met with Msimeselo Boltina, a young black guy from Lusikisiki in what was the former Transkei Homeland. He is some twenty-eight years old, confined to a wheelchair, cannot talk and has been (most probably mis-) diagnosed with arthritis! If we think we are hard done by poor medical infrastructure and support, then he (and so many others) really has a massive challenge.

Put into the equation a young psychology student, Callyn Bowler – ironically her father Keith Bowler is one of the main organisers of the IRONMAN® SA contest. In her boyfriend’s mother, she has been exposed to the ravages of motor neurone disease and has felt moved to assist people in this area who have the disease. She has researched the internet and with the information gleaned there, wishes to start a support group for MND patients in the Eastern Cape.

It really would be great to see her vision come to fruition in Nelson Mandela Bay.

Besides the symptoms of one’s illness that one has to contend with, it is often the isolation, the sheer loneliness and the lack of (especially) medical support that frightens one the most in dealing with this affliction.

I am fortunate to have – and I will always be indebted to – Port Elizabeth’s St Francis Hospice for their comfort and support. Especially Sr Gill le Roux, Sr Janice Malkinson and Isaac Ruben need to be thanked for their weekly visits – and Jenny Nickall – for all they do for me, and just for being there!

The Hospice Palliative Care Association of South Africa celebrates 25 years this year, and if ever there is a deserving association that needs your support, then here is one.

Please support them because, let me assure you, that when you have a loved one who experiences a terminal illness, Hospice will definitely be there to support you!

Throughout our country, they promote quality in life, dignity in death and support in bereavement for all people living with life-threatening illness, and also for members of their family.

“Celebrate Partnerships” with them.

 If you feel moved to show your support, simply sms the word HOSPICE to 40772 (R20/sms) and show that you care. (You can visit the webpage www.hpca.co.za for more information.)

IRONically, the word LIFE is made up of two parts LI and FE. Li is the chemical symbol for Lithium and Fe the symbol for IRON.

Lithium is a silver-white metal and under standard conditions is the lightest and least dense solid element that can float on water. It is soft enough to be cut with a knife. The nuclei of lithium verge on instability and the metal is highly reactive and flammable.

When cut open, it exhibits a metallic lustre, but contact with moist air corrodes the surface quickly to a dull silvery gray and then black tarnish.

Pure Iron (Fe) is also soft, but may be significantly hardened and strengthened by impurities from the smelting process – up to 1000 times harder in the form of steel.

Isn’t that LIFE? Soft as we may be as human beings, we are also very unstable and highly reactive. And we are hardened by the challenges and impurities that life throws at us. But at our core, we are still soft and we can exhibit lustre by showing that we do care.

Africans talk about UBUNTU: we are because of them! So as we celebrate being men of iron, let’s also show that we do have some lithium in us, too!

*(Interestingly, lithium salts have proved to be useful as a mood-stabilising drug due to neurological effects of the ion in the human body.)

 

Diamond Iron Gold Silver Bronze Black Diamond Green Emerald

Monday 11 April 4 years 7 months on … ADVANTAGE CBD

A month ago today, Friday 11 March 2011, Japan was hit by its strongest earthquake ever, followed by a devastating tsunami and then a nuclear disaster. Thousands of people were killed and many more missing – also presumed to have died.

 Today, it was struck by yet another large earthquake and a tsunami. In the interim there have been numerous other after-shocks.

And all this time, I have not written anything.

 The reason for this is quite simple: My hands are becoming more difficult to hold up, my fingers becoming more rigid, sitting for periods of time becoming very uncomfortable (my left bum is numb most of the time!) and my mind becoming cloudier and overcast. It’s not exactly the best recipe for writing!

Added to this, are the ongoing normal daily domestic, home and family issues that have to be attended to, and are sometimes more taxing than dealing with the CBD.

The fact that Japan has had one major disaster does not preclude it from being subjected to many more. The fact that I have CBD does not preclude me from having to face many other of life’s challenges as well.

And so, the last few weeks have been particularly taxing and draining. I grow tireder and wearier – some I guess from the life issues and some from the disease itself.

Yesterday, Sean and I went down to the beachfront to watch the Iron Man contest. I recall being one of a small group of people watching from Hobie Pier the swim commence in the very first Nelson Mandela Spec-Savers Iron Man contest seven years ago. The contest has subsequently grown tremendously and improved significantly.  

Thousands of people now line the route and get involved in the festivities of the day. As in life, there are those who make use of the opportunities that come their way, those who do not get involved at all and those who find fault in every prospect. Despite the economic benefits for our City and the plain and simple entertainment value of the occasion, there are those who will complain about the road closures and the traffic jams!

For the 1745 athletes themselves, there is the challenge of their personal triumph over time, distance and their own bodies as they take on a 3,8km swim, a 180km cycle and then a full marathon of 42,2 km!  

We watched as local athletes Tissink took the gold (8 hours 5 minutes) and Cunnama the bronze, with German Bocherer taking the silver – all three breaking the previous record time of 8 hours and 17 minutes!

The athletes looked tired and weary as they crossed the winning line one after the other – from 15h00 onwards until the cut-off time at midnight, 17 hours after the start at 07h00!

For a moment, I thought of my own race that I run – my body becoming wearier with each additional step that I take. How many more laps do I have to run? How much more time do I have? When will that finishing line appear in front of me and what will be the numerals on that overhead digital clock that constantly counts the time.  Some days, I look so forward to seeing that finishing line.

But then there are the times when you feel like you can and want to do yet another marathon and a few more laps!  Times like Friday night’s Neil Diamond show at the Nelson Mandela Stadium.

Way back in October last year, it was announced that 70 year old Mr Diamond would be singing in Port Elizabeth. Never in my wildest dreams did I ever expect to hear the person that I used to listen to on Springbok Radio singing live in “PE” (as he announced his welcome to the 22 000 strong audience!)

It brought back memories of Friday night’s Springbok Radio Top 20 and my little brown leather-cased transistor radio with earphone that I used to listen to in bed in darkened bedroom between 10h30 and midnight. There were all those other radio programmes too – Squad Cars, Pick a Box, Mark Saxon – No Place to Hide, Consider Your Verdict, Creaking Door. The list is endless.

Those were the pre-TV days and besides my brown Hitachi transistor radio there was the “wireless” in the lounge – the radiogramme with a few orange-lit valves in the back and a green eye in the front that had to light up before it was warm enough to make any sounds!

Besides the radio and Springbok’s Top 20, there was the record player that played those heavy black His Master’s Voice records at 70rpm, the 7-singles at 45rpm and the LP’s at 33 and a third RPM – that included my LP of Neil Diamond Hot August Night!

You put the record on the silver centre spindle (spindle through hole in centre of record), moved the swing arm to steady the record on top of it, and then pressed the start button. The LP dropped onto the turntable, the arm with the stylus moved over the edge of the record, then descended onto the outer grooves and – voila! – Mr Diamond would start singing in mono sound out of the speaker at the bottom of the ‘gram! 

When it was announced that Neil Diamond would be singing here in PE, I invited AlgoaFM listeners to apply for two tickets that I sponsored. Their stories are blogged previously.

I awarded the tickets to sixteen year old George Marriott of Queenstown, a pupil at Queens’ College. He has an illness called spino cerebellar degeneration and is largely confined to a wheelchair. His parents and sister joined him for the concert, and it was an absolute pleasure meeting them at the concert and getting to know them better at breakfast.

One of the slogans of the Iron Man contest is “ANYTHING IS POSSIBLE”. This is so true when one sees the hardships that so many people have to face on a daily basis. It gives me strength to face yet another lap!

And for the two hours that Neil Diamond entertained us, there was not a care in the world. The audience was soaked up into the pleasure of his music and the memories of all his old favourites.

Music transports me into another world – it’s almost as if one leaves your own body and enters a realm where the pain and discomfort of the body is felt no more. Those two hours of bliss were no different.

It was a hot April night! PE laid on its best autumn evening with no wind, the stars shone overhead, the music played and the crowd sang, clapped and danced the night away. What a privilege to have such a stadium, what a privilege to have Mr Diamond in the Friendly City, what a pleasure to hear his music first hand – not through the small 2 inch speaker of the transistor radio or the 10 inch radiogramme speaker, but through the most sophisticated of modern-day electronic equipment.

(If I may be realistic for one moment and put my feet back on the ground, then I must voice my concern about the lack of upkeep in the area around the NMB stadium. Less than a year after the euphoria of the FIFA World Cup 2010, the pavements are already broken, the weeds are taking over, the potholes have appeared and many of the lights have gone out. The North End area is looking more tired than many of the Iron Man contestants! What, one wonders, is the future of this magnificent structure in a City fraught with fraud, corruption and non-delivery?)

Neil Lesley Diamond finished off his main programme with a song with which I was not familiar, but, thanks to Briony Sparg and an AlgoaFM listener, I was able to source it the following day. The words of Hell Yeah! Form the album 12 Songs, says it all:

If you’re thinkin’ that my life
Is a hoot and a holler
From the start of the day
To the dark of the night
THAT it’s ringing like a bell
That you only wanna follow
And trust me when I say
I’m just trying to get it right

Still I think about myself
As a lucky old dreamer
If you’re asking me to tell
Is it worth what I paid?
You’re gonna hear me say
Hell yeah it is

And I say it loud
I loved it all
And I’m not too proud
I freed my soul
Just let it fly
Hell yeah this crazy life around me
It confuses and confounds me
But its all the life I’ve got
Until I die
Hell yeah it is

If you’re asking for my time
Isn’t much left to give you
Been around a good long while
So I gotta say it fast
Time is all we’ll ever need
But its gotta have a meaning
Be careful how it’s spent
Because it isn’t gonna last
I hear you wonderin’ out loud
Are you ever gonna make it
Will you ever work it out?
Will you ever take a chance?
Just believe you can
Hell yeah you will

Gonna be okay
You might get lost
But then you’ll find a way
Don’t go alone
Can’t be afraid
Hell yeah this life is here
And it’s made for livin’
And loves a gift that’s made for GIVING
Give it all away and have it still
And hell yeah you will

I’ve been livin’ in a bowl
With a lot of people starin’
With my feet on shaky ground
And my head up in the sky
But it’s where I wanna be
It’s a life that’s made for carin’
Got a song to pass the day
And a girl to share the night

So if they ask you when I’m gone
Was it everything he wanted?
When he had to travel on
Did he know he’d be missed?
You can tell them this
Hell yeah he did

He saw it all
He walked the line
Never had to crawl
He cried a bit
But not for long
Hell yeah he found the life that he was after
Filled it up with love and laughter
Finally got it right and made it fit
Hell yeah he did
Hell yeah he did
Hell yeah he did

To finish off a wonderful weekend, our very own modest 26-year old South African Black Diamond, Charl Schwartzel, put it all together to perfection on Sunday evening. He moved up among the leaders after a long chip-in for birdie at the first and a wedge shot from the fairway that dropped in for an eagle on the third hole. He then clinched his triumph with birdies on the last four holes for the thrill of slipping on the green emerald jacket, after winning the 2011 Masters Golf Tournament at the Augusta National Golf Club in Georgia, USA.

“It’s a dream for me,” said Schwartzel. Indeed, it was a dream weekend for many!  Hell Yeah it was!

Health-Meter

  Excellent             Ave                 Poor
Cognitive  
Memory-Short term * * * * * * * * * * * * * *                      
Executive function * * * * * * * * * * * * * * *                    
Spelling * * * * * * * * * * * * *                        
Figures * * * * * * * * * * * * * * *                    
Physical  
Left hand/  arm * * * * * * * * * * * * * * * * * * * * * * *    
Left leg/ foot * * * * * * * * * * * * * * * * *                
Right hand / arm * * * * * * * * * * * *                          
Right leg / foot * *                                              
Lungs *                                                
Swallow *                                                
Spasms –left * * * * * * * * * * * * * *                      
Spasms –right *                                                

Red stars = Deterioration / Green stars = Improvement from previous week