Friday 24 June 2011: 4 years 9 months on … Game ED!


(from the Latin meaning Undefeated or Unconquered)

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

English poet:  William Ernest Henley (1849–1903)

At the age of 12, Henley fell victim to tuberculosis of the bone. A few years later, the disease progressed to his foot, and physicians announced that the only way to save his life was to amputate directly below the knee. It was amputated when he was 17. Stoicism inspired him to write this poem. Despite his disability, he survived with one foot intact and led an active life until his death at the age of 53.

The poem was written in 1875 in a book called Book of Verses, where it was number four in several poems called Life and Death (Echoes). At the beginning it bore no title. Early printings contained only the dedication To R. T. H. B.—a reference to Robert Thomas Hamilton Bruce (1846–1899), a successful Scottish flour merchant and baker who was also a literary patron. The title “Invictus” (Latin for “unconquered”) was put in the Oxford Book of Verse by Arthur Quiller-Couch. 

The poem has Influenced the arts ever since.

In the 1942 film Casablanca, Captain Renault, a corrupt official played by Claude Rains recites the last two lines of the poem when talking to Rick Blaine, played by Humphrey Bogart, referring to his power in Casablanca. The irony in the reference is that the theme of the poem refers to self-mastery, when in fact all of Renault’s power in Casablanca is merely granted.

In the 1945 film Kings Row, Parris Mitchell, a psychiatrist played by Robert Cummings, recites part of “Invictus” to his friend Drake McHugh, played by Ronald Reagan, before revealing to Drake that his legs were unnecessarily amputated by a cruel doctor.

While incarcerated on Robben Island prison, Nelson Mandela recited the poem to other prisoners and was empowered by its message of self mastery.

The poem was used in a voice-over by Lucas Scott in the television series, One Tree Hill.

Canadian poet and singer-songwriter Leonard Cohen recited the poem as an introduction to his own song “The Darkness”, during a couple of shows on his 2010 world tour, most notably at his State Kremlin Palace show.

In Napoleon Hill’s book, Think And Grow Rich, this poem is quoted and discussed. Hill added that, we are master and captain, “ . . . because we have the power to control our thoughts”. We are warned that this “power”, alluded to in Henley’s poem, “ . . . makes no attempt to discriminate between destructive thoughts and constructive thoughts”. Napoleon Hill explains that the conscious choice is laid upon the individual and suggests that the poet left others to, “. . . interpret the philosophical meaning of his lines”.

The poem was important to Oklahoma City bomber Timothy McVeigh, who recited it on the day of his execution.

Novelist Jeffrey Archer quoted the poem in the first volume of his A Prison Diary series ‘Hell’ which recounted his time inside HMP Belmarsh.

“Invictus” is also a 2009 biographical sports drama film directed by Clint Eastwood starring Morgan Freeman and Matt Damon.

The story is based on the John Carlin book Playing the Enemy: Nelson Mandela and the Game That Changed a Nation about the events in South Africa before and during the 1995 Rugby World Cup, hosted here following the dismantling of apartheid. Freeman and Damon play, respectively, South African President Nelson Mandela  and Francois Pienaar, the captain of the South African rugby team, the Springboks. (1)

The 1995 Rugby World Cup Final was played between the Springboks and the New Zealand All Blacks at Ellis Park in Johannesburg exactly 16 years ago today on Saturday 24 June 1995.

For three weeks, prior to this big day, we had lived through World Cup euphoria (something similar, although not quite as big, as last year’s Football World Cup).

Together with friends and family, we had planned a day of festivities around the Final and which would culminate in that South African tradition of all traditions, the all-important braai!

Well, we never got to participate in the events planned for the day.

Pera was six months pregnant and due at the end of September 1995. (We previously lost a second son who had been still-born in November 1994.) Early on the morning of the Final, I woke up to hear her screaming in the kitchen. The baby (at 26 weeks) was threatening to come out and I rushed her to St George’sHospital, where we spent the rest of that day. The doctors managed to prevent the birth, Pera remained in hospital and late that evening I drove up Cape Road on my way home.

Everywhere, the fires were burning, people were partying in the street and ecstasy, excitement and exhilaration pervaded the country. We had beaten the All Blacks 15 points to 12 and the World Cup was ours – the rugby kings of the World! (To this day, I have never watched THAT game in its entirety, but, of course, I have many times seen the photograph of THAT drop goal that sealed the game in our favour and which hangs in just about every boardroom and pub in this country!)

It was a tremendous boost for our fragile new democracy born in 1994 and barely one year old!

But talking about births … for the next two weeks, the baby threatened to be born. On the night of 6 July, with Pera’s gynaecologist, Dr Caras Ferreira, out of town, Dr Ivan Berkowitz was hurriedly called from a formal dinner to St George’s Hospital when, once again, it was touch and go. He arrived at midnight in his tuxedo and bow-tie.

(I knew Ivan and Harriet well, and we have remained friends to this day.

Ten years prior to this, in June/July 1985, the Grey First Eleven went on the first Grey overseas cricket tour to England and Holland. Darryl Berkowitz was Headboy of Grey in that year and a member of the touring team that I accompanied, together with Rod McCleland, Keith Crankshaw, Dickie Ogilvie, Neil Thomson and Charles Pautz. We sold tickets for that dreaded VW Golf and raised funds together with the Berks (and all the other parents) and also had our return party at their home in Conyngham Street.

It was so good to meet up with many of the members of that touring team at last year’s and this year’s 25th Reunions at the school. And, as I write this, the Grey cricket team is once again touring England. We wish them good luck and happy travelling!)

Anyway, Ivan explained that Pera would have to remain in hospital for the rest of her pregnancy, and that if he did not deliver the baby soon, we would lose either Pera or the baby.

And, so it was, on the next morning, Friday 7 July 1995, sixteen years ago, that our second son (and we had previously been told by the gynaecologist to expect a girl) was born by caesarean section at twenty seven weeks and weighing 1,3 kg. Our previous son was due to be called Phillip, so this baby was named Phillip John. He spent the next two months in the incubator at the hospital, and cost the medical aid about double the price of our very first house that I had bought!

Phillip John Lunnon (our Dr Phil!) celebrates his sixteenth birthday in two week’s time. Now, at six feet and three inches, he is the tallest in the family, beating me at six feet and Sean at six feet and two inches!

He is our fighter – our very own Invictus.

There have been times that I did not think that I would make it to his sixteenth birthday but I, too, am a fighter.

I thank whatever gods may be
For my unconquerable soul.

I am the master of my fate:
I am the captain of my soul.

[ (1) From Wikipedia]

Down Under! (but not yet down…)

Friday 28 January 2011: 4 years 4 months on …

Imagine travelling in China for four years and never hearing any English. Then one day, someone arrives and converses with you in English. What excitement!

Well, that’s how I feel – I am so excited – because this week I have found someone who understands what I am experiencing:

For the first time since I was diagnosed with CBD just short of four years ago, I have had direct correspondence with someone else who also has the illness. Her name is Alison Bevon from South Australia and, with her permission, I am publishing her email to me:

Dear Ed
Thank you for replying to me.  I do feel like I have known you for a few months now.  I have been reading your blogs regularly and I have attempted to listen to your radio programme, but because I live in South Australia and we do not have a very good wireless broadband system where we live its hard to keep it from dropping out,  but your blogs have been an inspiration to me.  I feel like I have come to know when your feeling down, and its hard to keep your spirits up.  Maybe sometimes you feel like me and  think you can defeat this illness and its not going to end up being the disaster we know is coming.   That’s why your article waiting at Heathrow or Deathrow, meant so much to me.   I have been trying for ages to try and put into words how I am actually feeling but finding words isn’t easy for me now.  So now I have shown my family your posting and it all makes it easier for them to understand .  As much as you can understand without actually being in our position.
As for me, I am 59 years old, married ( for 41 years) female diagnosed in February 2010,  after I had what we thought was a slight stroke, and I lost control of my right arm. I could move it but it really wasn’t responding to me and I was very unsteady on my feet and my speech had slurred.   I had a previous one a few months before but that had resolved itself but I had begun to lose parts of my ability to calculate problems, couldn’t follow a recipe and I was forgetting to for example hang out the washing which I had forgotten I had done.  My G.P. decided I had depression and was testing me for that, even though I was adamant I wasn’t depressed. I was also being treated for a stomach problem where the nerves around it weren’t working properly and couldn’t compress.  Now that had been put down to my condition. 
I was sent to a neurologist and had an MRI which showed diminished frontal temporal lobes and a few white spots which shouldn’t have been there, as well as Multi System Atrophy. Then he came up with CBGD, which I had never heard of, but he gave me a medical computer printout of the condition and said he was very sorry but that now I was on my own journey and that it was terminal,  but I thought that was ridiculous, I would prove him wrong but as the year has gone on and my symptoms have increased, I have accepted it and let my wonderful support team be there for me.
My support team consists of Disability services, which will supply any equipment I may need at home and a wonderful palliative care team ( which consists of doctors, nurses, and a physiologist) who all cater to my needs as they come up. ( All for free, because we have a great medicare system here ) . I have been to a Rehabilitation Centre where they taught me how do my exercises to keep my poor aching muscles stronger and strength training for my fingers which were becoming quite useless.  I also have a speech pathologist who will help me when I lose my ability to swallow correctly and I go to hydrotherapy once a week.   So as you can see I am being well catered for and I have my made an Advanced Medical Directive for my future treatment in writing so that my family doesn’t have to make any discussions for me which I know will cause them distress, because I dont want to have any medical intervention. No CPR, or peg feeding, or any thing that will prolong my life. 
I have had my DNA taken and I have donated my brain to the brain foundation.  So as you can see Ed, I am well prepared. I feel like now my bags are packed, my affairs are taken care of and I’m in that waiting room.  So now I am just waiting, waiting for the next symptom to arrive or for the next phase of my life.  Whatever that may be.
I have joined the CBGD Carers Support Organisation in America  on the internet and I find that very informative. I have posted a couple of times, but I feel like it then becomes about me, and carers have different feelings and concerns than I have and Robin who runs the forums always comes up with very informative information which I love to read.
As for my symptoms now,  I have trouble walking.  I have a wheelchair when we go out.  I couldn’t manage a walker because I have cognitive problems and I cant manage to coordinate everything.  I cant hand write anymore.  I was right handed but now I try to scribble with my left hand, and my right hand seems to wander a lot.  I have had trouble with night-terrors, waking up five times a night screaming, but my palliative care doctor prescribed Rivotril drops ( I dont know what there called in South Africa ) because she said I was having small seizures and the drops have helped me alot. I take Baclofen for muscle spasms, Moltilium for my stomach problems and it helps stop the nausea, when I get dizzy, and Pariet medication for Barretts disease. As well as PanadolOsteo for my general aches and pains.  My right eye gets very jerky at times, and I have trouble conversing with people face to face or on the phone,  however,  I can still type and I can still get my thoughts to paper.  Which is not bad for a person with a form of dementia. 
I forgot to tell you about my wonderful husband, John, who is now my carer.  He has gone from a person who couldn’t boil water to someone who now has to cook, clean, push me around in my wheelchair, wipes my tears, taken over all the household duties without complaint.  I don’t know how he does it.  He also had a triple by-pass three years ago so he also has that medication and problems to deal with as well.  I have an adopted daughter who is 25 years old now.  She doesn’t live at home any more she only moved out a few months ago.  She tries to deal with my problem as best as she can, but its hard to deal with.  Another wonderful family, the family of a friend of hers, has taken her under their wing,  and I am very happy that they include her in all their family, grandparents, uncles, aunties, cousins, so I wont  have her to worry about her, when I cant be there for her anymore.
Apart from all that Ed, and you said to write, give it to you all so I hope your coping alright with all my writing.   There’s a lot more information I can give you but you probably need a rest from reading and I definitely need one from writing,  but today I’m in a very happy place.   I feel like I have found  a friend in you, because I knew no-one with this disease before I started reading your wonderful blogs I love your stories and I love your pictures. So I really feel like I know you  well.  Thank you for taking the time out, of what seems like a very busy schedule, to write to me.
Take care
P.S. My palliative care psychologist, took a copy of your wonderful Heathrow article, after I showed it to her to let her know how I was feeling.  She said it was truly inspirational and would help her understand what many of her patients are going through.

Stuck at the Airport

Monday 10 January 2011: 4 years 4 months on …

Over the last few weeks we have heard many stories and seen many visuals of people stuck at airports in the United Kingdom, Ireland, Europe and North America. Unseasonable weather and heavy snowfalls created a knock-on effect and havoc around the world. People’s holiday, Christmas and New Year’s plans were thwarted and thrown into disarray.

That’s Life!

We can plan, set objectives and goals, make New Year’s resolutions and think that we have everything under control, but suddenly, and often, in the blink of an eye, God – or nature or the universe or some higher authority or life, or whatever we believe in – dictates otherwise.

As much as we think we ARE, the reality is just that we ARE NOT in control.

And, so, at times, we get stuck at the airports of Life.

I think of my own situation. It was slightly more than four years ago that I started realising that something was wrong. My left hand fingers weren’t doing what I was telling them to do and I was having problems shaving – I couldn’t get my left hand to my face!

Chiropractors, physiotherapists, doctors, neurosurgeons, neurologists, CAT and MRI scans set the investigatory pathway beyond cancer and tumours to Parkinson’s and then eventually to Corticalbasal Degeneration.

In that brief moment, sitting in the neurologist’s office at Tygerberg Hospital in Cape Town, my life – and that of those closest to me – was thrown into disarray. Our plans, our goals, our objectives, our lives, were thrown out of the window in the flash of a moment.

Just when I thought that my life’s Garmin was working at its best, when I thought that my GPS system can’t get it wrong, my way was lost. The snow had come and I was stuck at the airport!

When you lose your way with a GPS, you are told “recalculating” is taking place. New objectives and instructions are given to get you to your destination.

Similarly, when stuck at Life’s airports and at this time of each year, you need to take stock, “recalculate” and set yourself new goals, new plans and new objectives. Otherwise, things can go horribly wrong.

My diagnosis has got me stuck. And being stuck at my particular airport doesn’t make things easy. It’s the difference that one letter makes.

I am not stuck at Heathrow – I am stuck on Deathrow.

Whilst the rest of the world carries on ‘normally’, I (and my family for that matter) have become entrapped in an artificial cacoon – waiting for the inevitable to happen.

There’s no way back. I can’t go back to the Life that I knew. Right now, there is no way to reverse the CBD that I have. The damage has been done and cannot be repaired.

Each day, more and more snow falls. What started off as an exciting new challenge becomes a daunting future. The circumstances become increasingly difficult. And I am being worn down, day after day.  As the disease gives more of itself each day, it takes more of my body by paralysing it and more of my mind by confusing it. I become increasingly weary.

All that remains is to wait for that plane to arrive to take me to my Final Destination, and to make myself as comfortable as possible in the meantime.

And, in the meantime, like at the airport whilst the wait continues, the floor becomes hard, the lights go out, the services dry up, the money dries up, the patience runs out, the tempers fray, the information ceases and the waiting becomes intolerable.

I have said that I will party till the End. I am not being negative nor selfish but, please forgive me if there are times when I wish that End to arrive speedily, when I wish for that plane to arrive sooner rather than later. There are times when I consider all the possibilities of hastening the arrival of that plane – a mercy flight? – that will take me out of this uncomfortable hiatus.

I guess there are many people who have been stuck in similar circumstances before, and many will be stuck there in the future. Many are stuck with me right now!

It is not for us to judge their wishes. It is only when we, too, experience those circumstances, that we may be able to make an informed decision about their wishes and actions.

Is there ever a point when the quantity of life overrides the need for the quality of life?

 It is something that I wrestle with as the packing up and goodbyes commence and St Francis Bay and Holidays 2010/2011 come to an end.

 It is something that I wrestle with in my cacoon as I set my objectives, goals and plans for 2011.  






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.


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.