The Walk to Freedom

©2012 Edward C. Lunnon

Monday 13 February 2012: 5 years 5 months on … Advantage CBD

Last Saturday morning, Sean and I left Stellenbosch, crossing Sir Lowry’s Pass in the rain. Behind us, False Bay and the Hottentots-Holland basin lay basking in the sun.

The weather mirrored my mood.

It had been another trip of sunshine and rain.

It took a while to convince myself that I was able to do another long trip by car. Travelling is just becoming that much more difficult for me. It’s far easier and less frustrating just to stay at home. But I have to guard against becoming a couch potato, and I really have been nowhere since the last trip to Nieu-Bethesda in December.

A last-minute decision on the previous Thursday saw us deciding to make a trip to the Western Cape and the Cape of Good Hope. Sean had not yet started his second year at university and I am retired – so we had the time! Sean was keen to see his mates in Stellenbosch. Did I have the will?

I was keen to attend the Il Divo concert in Cape Town – I have enjoyed their music for a few years now. Once I had ascertained that there were still tickets available, I booked and the decision was made. Cape Town – here we were coming!

We left on Monday morning, heading westwards along the N2, stopping at the Storms River Bridge and in George and arriving in Stellenbosch (my birthplace and centre of learning) at 18h00. The temperature peaked at 43 degrees Celsius somewhere near Riversdale – we were grateful for auto air-conditioning and the car seemed the best place to be!

Straight on to the Danie Craven Stadium to watch Maties play in the Varsity Cup against TUT (Tshwane University of Technology) and then on to The Akker and the pizzeria next door for pizza supper with Sean’s friends David and Graham Clarke, David Bryant,  Neil Wessels and others.

Then we went on to Durbanville to the Wüsts where we would be staying for the week.  It was from their home five years ago to the week that I proceeded to theTygerberg Hospital to be informed of the diagnosis of CBD. This was the birthday week that I was supposed not to have seen!

Tuesday saw us heading for the Cape Town docks and Robben Island (Rob = seal in Afrikaans). We had tried so many times before to view the Museum there and each time the trip had been cancelled because of poor weather or a malfunctioning boat! So it was with a bit of apprehension that we headed for the docks.

But this time it happened, and we were joined for the trip by my nephew-in-law Sebastian Ridgway.

(As a student, I had previously visited the Island, when it was still a prison, for a dinner-dance one Saturday evening. We had gone across on the ferry in the dark, danced the night away, drunk copious volumes of alcohol, eaten the best of sea-foods garnered from the cold waters of the Atlantic Ocean that surround the Island, and returned on the ferry at 3in the morning, with many passengers returning their sea-food to the self-same place from whence it had come!)

This day-time ferry trip crossing the some 14 km took some thirty minutes. Although it was quite hazy, the trip reveals a magnificent view of Table Mountain, Devil’s Peak and Lion’s Head. In fact, you see Table Bay as you have never seen it before. Indeed, the “fairest Cape in all the world”!

Once on the Island we were bussed to the Robben Island village (where the prison warders and now the museum staff live – and where we had previously partied) and to  the various prisons (that one for criminals, the one for low-level political prisoners and then that maximum prison that was reserved for “The Leaders”  – Nelson Mandela and the rest!)

If the view from the boat is spectacular, then the backdrop of Table Mountain from the Island is something to see to believe. The history of the Island, as told to us by the guide, from penal dump to leper colony, through prisons, to the museum of today makes for interesting listening. It is almost a summary of the history of our country – something not to be missed if you are visiting Cape Town!


Too soon we were walking from Madiba’s cell back down the road to the boat in the Island harbour and back to the Mother City.

The time spent on the Island is not nearly enough to take in all the history and the scenery. I felt quite guilty when I realised that I had partied the night away way back in the seventies in a hall just a few hundred yards away from prisoner 46664, Nelson Mandela, then “terrorist” and now our beloved Madiba and retired first president of the democratic New South Africa.

How the world has changed in less than thirty years. Last Saturday when we drove back to PE, 11 February, was the 22nd anniversary of Nelson’s release from prison, and we still remember those pictures when we saw him for the first time leaving prison in Paarl with Winnie, his then wife, clenched fists in the air and part of his long walk to freedom!

Anyway back to Cape Town. Sean spent the evening with friends, I collected him the next morning, we visited the Waterfront, found a sushi spectacular and then headed off to the Grand West Arena for the Il Divo concert. It was the opening evening of their current world tour. What a privilege to see them in person and to hear such big voices.

Thursday was visiting day in the Hottentots-Holland basin – first my high school in Somerset West* which takes its name from the basin and where I matriculated in 1974 with, as the Honours Board now tells you, one of the two A aggregates of that year; then my sister, Lyn in Strand and then my Aunty Doreen and Uncle Peter at Bikini Beach in Gordon’s Bay.

Then we head back to Durbanville to have dinner with my neurologist, Franclo Henning and his wife Helen. Five years and one day to the date after my diagnosis – we joke about the prognosis I was given and jokingly discuss the law suit regarding the timeline that I should not have made five years!    

This is my long walk to freedom …  how long will I be imprisoned in this decaying body and who knows when I will experience my day with that clenched fist in the air and cross the divide into the unknown that lies ahead?

Thursday was my day – I think Sean must have found it quite boring – so Friday was his day! We went to Stellenbosch, had lunch in the Neelsie (the Student Union), then left him with his friends for the day and night, and visited some of my student friends at Helshoogte (my ex-residence of six years).

Then, for me, back to Durbanville for a farewell braai with Gretel and Willem.

It was the end of another very busy week … early Saturday morning, we left Stellenbosch headed eastwards to Plettenberg Bay for a quick visit to the Bryants, and then back to Port Elizabeth (to the news that Whitney Houston had died at the age of 48! Her walk to freedom, like Michael Jackson and Amy Winehouse before her, was also at an end.)

I was exhausted but excited and elated that I had once again gone home to The Cape of Good Hope.

Dare I hope for another visit?  In the meantime, I’ll just keep on walking …

 * My grateful thanks are extended to Sunette Fourie for inviting me back to the school and for being such an excellent hostess and tour guide. She is the only teacher still at HHH who was there when I was there as a pupil. The only other person from my era still there is Kevin Dockrall who was in class with me and is now a teacher at the school. It was great catching up with him too in the staffroom at break time.







High Five!


Monday 5 September 2011: 5 years on … Advantage ED

September is the month of birthdays.

Today is my sister, Ingrid’s, birthday.

Next Tuesday 13 September would have been my father’s birthday.

I was born on Tuesday 18 September 1956 so Sunday 18 September 2011 is my 55th birthday

And, of course, this September is my 5th birthday with CBD – having first noticed strange symptoms in September of 2006.

I had first noticed that I was having difficulty typing on the computer keyboard with the ring finger and pinkie of my left hand. Then, I needed to hold my left hand with my right hand when I shaved.

The disease affected my left side first, and being left-handed, I noticed the problem early. I ignored it at first, thinking it was a re-occurrence of a herniated neck disc that I had experienced in 2000 (shortly after returning from Disney World in Orlando, Florida) and for which I then had surgery, fusing  two discs with a piece of bone from my right hip.

Over the years I have had numerous operations – my hip is in my neck, and I have bone from my knee in my right big toe to “fix” a fracture I obtained during my military service in Oudtshoorn. I spent many weeks at the 2 Military Hospital in Wynberg,Cape Town.

But, it was on a September hunting trip that I started feeling the numbness in my right arm.

Sean and I had gone hunting with Gary Webb from Addo and Andrew Kettlewell, our plumber from Andrew’s Plumbers. Andrew and his family had decided to emigrate to Australia, and this was to be their last weekend in Africa. Andrew wanted to spend it with his son under the African sun in the African bush, and he invited Sean and I to accompany them. We had just bought our white diesel Peugeot and we drove the brand new car through the muddied gravel roads of the Kirkwood area. I remember not being too happy about that.

But it was a tremendous weekend – up in the mountains around Kirkwood. We slept in the hunting cottage and braaied on the Saturday evening as one does on hunting trips! Everything was perfect, except for my arm. I just kept quiet about it though.

And when we arrived home on the Sunday, 17 September – the day before my 50th birthday – Pera had prepared a surprise party and we braaied again, with everyone who had come round to celebrate.

That next week was the start of the 5 month journey visiting the medical fundi’s – the doctor, the chiropractor, the physiotherapist, the neurosurgeon, the neurologist, the MRI and CAT scans, and eventually Tygerberg Hospital and the diagnosis of corticalbasal degeneration.

I was told that I would, most probably, become severely incapacitated within three years and would die within five.  There was a caveat though: “jokingly” I was told that if I made five years I would maybe consider coming back and suing the specialist for giving me the incorrect information, and for pain and suffering!

Well, it’s five years on:

Andrew, Carol and family are alive and well and living in Australia.

Ed is alive and not so well – but far from severely incapacitated or dead – and still living under the African Sun.

Sean now does the driving.

High Five!

(Maybe I should call my lawyers to call their lawyers in order for them to go and have lunch together  on my account!)

Ed Lunnon is a Happy Traveller

Wednesday 16 February 2011: 4 years 5 months on …

Ed Lunnon is a happy traveller.

On Thursday 8 February 2007 he was in Cape Town, South Africa, but this time on a very different journey.

 At 9h00 he walked into the neurologist’s office and when he walked out, it was the beginning of a trip unlike any other he had previously undertaken.

 After five months of medical tests, a degenerative neurological disease called corticalbasal degeneration had been diagnosed. This illness would progressively melt down his body until he would become severely incapacitated.

He was told to return to his home in Port Elizabeth and to enjoy the next three years of quality life remaining.

 His personal diary documenting that poignant final journey was shared with his friends and family initially by e-mail and later through Facebook. By popular request, his private thoughts became public domain through a blog site, BrainStorms, and a weekly radio programme, ED is in wED, with presenter Lance du Plessis of AlgoaFM. The natural progression was to this website, Live.Life.

 These activities, and the public support in reaction to them, has sustained and encouraged Ed along the difficult steps of that journey of saying farewell to a beloved world in which he has so enjoyed travelling.

Hopefully, the time you spend travelling through this website and blogsite, accompanying Ed on his final journey, will encourage you to Live.Life each and every day, and to remind you to embrace the delicate, transient moments of our lives.

After all, our lives and the people that we share our moments with – our family, friends and even ourselves – are but fleeting joys.

 But we never lose the time we spend enjoying them. It is time that assists us to conquer our fears of our final earthly trip – of facing death and leaving behind those whom we have loved and with whom we have shared that time.

“And if we can conquer our fears, we can conquer anything.”


Be an ACE …

Live and leave      A  bundantly
Laugh                    C  ontinuously
Love                     E  ndlessly

To succeed in Life, you need a Wishbone, a Backbone and a Funnybone

Candle in the Wind

Monday 7 February 2011: 4 years 5 months on …


Jesus bids us shine
With a pure, clear light,
Like a little candle
Burning in the night.
In this world of darkness
So let us shine
You in your small corner,
And I in mine.

Jesus bids us shine,
First of all for Him;
Well He sees and knows it,
If our light grows dim.
He looks down from Heaven
To see us shine
You in your small corner,
And I in mine.

Jesus bids us shine,
Then, for all around;
Many kinds of darkness
In the world are found
Sin and want and sorrow;
So we must shine
You in your small corner,
And I in mine.


The 21st Century and the New Millennium came with great trepidation and expectation.

 What would it bring?

 In my case, my neck collapsed and 2000 AD saw me in a neck brace and surgery to repair a herniated disk in my neck with bone from my hip.

 In 2001, the Twin Towers of the World Trade Centre in New York City came tumbling down.

 And, if I thought that was a crash, then in 2002, our whole world fell apart when suddenly, overnight, I found myself jobless and out on the street.

 The next four years saw many hours and days of hard work and slogging, rebuilding my life around a new consulting business. But, just as that business started taking shape, the tremors of 2001 and 2002 proved to be but the foreshocks of the main seismic event that was to come.

 In September 2006, just days before my 50th birthday and after having spent hours behind the computer finalizing accreditation documents for our new Company, I realized that my left hand fingers were not always pressing the right keys on the keyboard. That, together with a strange tingling sensation in my left arm, brought me to think that I was having a recurrence of the 2000 neck collapse.

 The next five months saw me visiting the doctors, the chiropractor, the neurosurgeon, the neurologist and the hospitals for MRI and CAT scans.

 In December 2006, I was given a drawing and a description of the possibility of what was called an extra-pyrimidal disorder. Confirmation would be required by undertaking a trip to Cape Town.  


A first trip in January 2007 to Cape Town’s provincial and the University of Stellenbosch’s academic facility, the Tygerberg Hospital, proved unsuccessful when upon arriving there, it was discovered that the Professor of Neurology was overseas.   

 Another trip was arranged.

 And so it was that tonight, exactly four years ago, on 7 February 2007, I found myself in Cape Town once again. The next morning, 8 February 2007, the diagnosis was confirmed: I was told that I had corticobasal degeneration, and that I would become severely incapacitated within the next three years, with death expected from pneumonia within about 5 years. I was given a handwritten note so that I could remember the name of the illness. I remember very little of the rest of that day as I sat at Cape Town’s International Airport waiting for my flight back to Port Elizabeth and my family.

I was later to discover from the internet that CBD was like a burning candle, melting your muscles and leaving your body a pile of wax. It begins on the one side of your body and then works its way across. As it gives more of itself, it takes away more and more of your abilities – your ability to walk, balance, talk, think, swallow and use your hands. And, by the end, your brain is awake and imprisoned inside that limp pile of wax and you become a person frozen inside your very own flesh.

 All of this could take no more than five years from that day, 8 February 2007.

 And so last year, round about this time, after my first fall and breaking my elbow on my “good” side, I decided to be ‘clever’ and to save time and to respond to my family and friends by writing an omnibus email in order to update them on my condition.

 What started as a time-saving device has become an almost fulltime “occupation” – the emails grew into notes to my friends on Facebook and then into the public domain on a blog site Brainstorms on WordPress, and into the AlgoaFM radio programme, ED is in wED, together with Lance du Plessis. Today, on the eve of my fourth “birthday”, and thanks to Online Innovations, the website went live on the internet!

 As I write this note tonight, that blog site (only 11 months old) has just passed 17 000 hits – many readers who, like me, four years ago, had never heard about an illness called CBD.

 I am truly humbled that, by sharing my diary with you over the last year, an awareness has been created about illness and despair and the ability of the human spirit not only to challenge and meet and rise above these obstacles but also to accept that as humans we are not always towers of strength and sometimes it is perfectly good enough to just fall apart.  

 As I enter Year Five and my candle continues to flicker in the wind, I am only too grateful to you, the reader, for your continued support and encouragement to share my honest, humble, sincere and simple account of my ever-increasing difficult walk with CBD – my very own walk to freedom.

 “With all its sham, drudgery & broken dreams, it is still a beautiful world. “

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.  







This article will appear in the December edition of Matieland, the Stellenbosch University publication for its alumni:



Schalk Burger is a name not unknown in Stellenbosch.


But this Schalk Burger is from Windhoek. He is the newly elected primarius of Helshoogte for 2011 and gives me hope for the future.


Schalk is also my “adopted son” for the “Pa-en-Seun Naweek” which I attended earlier this year.


I am always thrilled to journey back to Stellenbosch. It is the hub of so many of my journeys and the source of so many of my traveling companions.


In fact, my life journey started there when I was born in the Hospital at the top of Merriman Street.


I returned to Merriman Street in 1976 to begin my academic journey and lived across the road from the hospital in the then 3-year-old Helshoogte. Six memorable years culminated in my also becoming the primarius. In 2004, I continued with that academic journey.


Stellenbosch created my wanderlust for travel. It was the hub from which four of us (including my sister Ingrid who later became primaria of Serruria) left in 1977 for a tour of Schalk’s homeland, Namibia, and from which eight of us left in 1981 on a Euro-Rail journey through Europe.


My current and most difficult journey commenced in 2007 – also in Stellenbosch! That was when Professor Jonathan Carr of the Stellenbosch University Medical School’s Neurology Department diagnosed a rare neuro-degenerative disease corticalbasal degeneration. It is a disorder that follows a journey all of its own. Daily, it gives more of itself, and takes away more of my body by gradually paralyzing it.


It will bring my life’s journey to a premature end. I want that journey to end in the place that I refer to as ‘Heaven is a place on Earth’.


So, on the weekend of my return, I arranged with Schalk that my ashes will be returned to that place where it all started – the top of Merriman Street and to Helshoogte in Stellenbosch.



The End of the Beginning (and the Beginning of the Next)

Tuesday 26 October 2010: 4 years 1 month on …

“You have a condition called corticalbasal degeneration.  You will become severely incapacitated within three years … and may have some five years left. Go back to Port Elizabeth and enjoy what time you have left …”

Those are the words that I remember from my consultation with Prof Carr at Tygerberg Hospital on 8 February 2007.

I set myself three goals, one of which was to see Sean finish his grade 11 year and enter his matric (Grade 12/Senior) year at High School. That was a year ago now, and I reached that goal quite comfortably.  I then set a new goal of attending his Valedictory Service at the end of 2010. I have slowed down and it has been more difficult to get here.

But, here I am, and – thank God – still not severely incapacitated. Although I am aware that the last few weeks have been the most difficult so far, I am still able to manage well.

And, here Sean is, finished with High School and about to write his final examinations over the next six weeks.

Eighteen years into Life and the last twelve years spent at school preparing for that Life. The last week or so has been hectically spent by him and his mates (and their families!) celebrating the end of those formative beginning years.

All of this has been well-documented and pictured on that new “can’t live without” in our lives, that euphemistically called social networking site FACEBOOK. (Our generation seems to have done quite well without it, but somehow have also slowly become addicted to it!)

First, they had their formal dinner at the Edward Hotel. A crowd of his mates arrived at our home before the dinner to have photographs taken.

I spoke to the matrics on Tuesday in the school hall ( read Fasten Your Seat Belts).

Then there was the Heritage March last Wednesday afternoon. With the military band resplendent in their reds leading the way, the Grade 12 class marches in their cadet uniforms from the present school buildings in Mill Park (just 3 years short of its centenary – will I be here in 2013 for that and Phil’s Valedictory? – my next  goal!).

They march towards St George’s Park, around Park Drive, cross Rink Street and down Pearson Street (I wondered if that Pearson is family of the current Junior School Headmaster Lindsay Pearson?) and head for the original school building on the Donkin, opened in 1859 as the Grey Institute for the first classes of the Junior School there.

The original buildings were bought by the Mediterranean Shipping Line and they have spent millions restoring both the school and the Rectory.

The school leavers form up with their “backs to the Southern Seas” in front of the school “with its front to the Southern Seas”. And so, witnessed by their parents and friends and many Old Greys, at the top of The Hill and with the white beaches and the Indian Ocean below, the Rector, Neil Crawford spoke to them about the wise man who built his house upon the rock, as opposed to the foolish man who built upon the sand.

 After Bible reading, prayers and the school song, the boys get to throw their berets into the air and to “klaar-out” for the last time. This is all very emotional and stirring stuff and the beginning of the many tears that flow over the next few days.

Wednesday evening saw the Officers and NCO’s celebrate the end of their year at a formal mess dinner in the school restaurant.

 Thursday is the Prize-giving and Valedictory services. Congratulations to all the prize-winners and the new Headboy, Alex Blumberg, and all the new prefects who were announced at those functions. Graeme Clarke, the outgoing head prefect made a very stirring speech as his farewell to the school, on behalf of his peers.

After the Valedictory Service, the parents all lined the avenue together with the staff and boys remaining behind, and bid our son’s farewell from the school, as they “walked ‘neath the Tower” for the first and last time as a school boy – and then headed off to the Old Grey Club at Kemsley Park.

Continuing with tradition, there, we, the fathers and them, our sons and now the newest Old Greys, had lunch together. (The mothers now head off to another venue, Elizabeth Place, this year, to tea and reminisce together.)

And then, after lunch, we all met up at what has become a new tradition – Barneys on the Beachfront.  At age 14, I was bringing Sean home after an evening cricket practice at Framesby when I reminded him that Mom was out and we were going home to an empty house. He suggested then that we go to Barneys for a beer! When I advised him that it was a bit soon for that, he invited me to have his first beer with him at Barneys when he turned 18! He would buy the round.

Well, (and although not his first beer!), true to his word, he bought the first round (with my money!).

There, the celebrations lasted well into the night, complete with school song and “For all the Saints” sung with gusto on the tables and chairs. Dad eventually got home after Son!

Twelve years as school mates and family friends have come to an end – the end of the beginning of the preparatory years.

And, now, after a week of festivities, the final crunch lies ahead, with school-leaving examinations taking place over the next six weeks. Then, it’s the Plett Rage, when our school-leavers and students head off to that wonderful place, Plettenberg Bay, to do whatever they do best in Plett!

 It brings back memories of my very own end of exams at Stellenbosch University, when we (four guys and a girl – names to remain anonymous to protect innocent persons!) arrived at the Piesang’s River Caravan Park – music (70’s and 80’s!) blaring from the car speakers, and were refused entry based on the fact that the Park was a family park and the owners were unable to distinguish a family in our Peugeot! We ended up camping at the Plett Caravan Park …

Nowadays, it’s all much more formalised and organised and patronised and socialised.

 I’m sure there will be many stories to write (and some not to write) about. In the meantime, a lot of hard work lies ahead. Good luck, with your exams, school-leavers, and good luck to us all, as we all face the beginning of the next of our lives!

For Whom the Bell Tolls

Life and Death: 3 more Funerals!

6 September 2010: 4 years on …

Despite the heart sore of all the funerals of the last few months, we have also joked about the number of family and friends who have passed away. Is it co-incidence or is it because of the age category in which we now find ourselves?


Despite the sadness, I have also experienced the fun of funerals. They have become sort of enforced reunions – seeing family and friends that you have not seen for years. In some cases, the funerals have also brought people together who, because of stupid arguments, have deliberately for years avoided each other.


Despite the tears, there are the laughs of funerals – in some way, I suppose, that is our human way of coping with the loss of losing people who have been so close to us in life.


Some while ago, I wrote an article entitled Four Funerals and Not a Wedding.  Since then, and during the course of the last two weeks, we have experienced another four deaths – Aunty Elsie, friend Sergei van Niekerk (brother of Lorna Brown and uncle of Wayne, Lindsay and Duncan Brown), friend Jenny Collier’s dad, and then on Thursday, Nico Malan, from Stellenbosch, who was killed in a car accident in Wellington in the Western Cape.


Nico was Tilly Wust’s sister. I have written about the Wust family often – we became friends at Stellenbosch and we often stay with either Willem or Jacobus when we are in Cape Town. In fact, in February 2007, I stayed with Willem and Gretel in Durbanville on the night before I was diagnosed with CBD at Tygerberg Hospital. Little did I think or know when I left their house that morning en route to the Hospital how my life would change within that next hour of my consultation with Professor Carr.  


The Wusts were five brothers: in descending order of age – Willem, Jacobus, Chris, Francois and Marius. Willem was Primarius of Helshoogte in the year before I was (1980) and Jacobus was Onder Prim in the year after me (1982). At one stage, Willem, Kobus and Chris all played rugby for the Helshoogte First Team. As a student, I often used to go home with them to Durbanville or to their holiday house at Pringle Bay. I was almost like the 6th brother in the family!


Willem and I visited George and Plett in his red Toyota during varsity holidays, and I have fond memories of our stays with Dr Hendrik du Toit and his wife Anna at 21 Caledon Street, George. I also often stayed with them when I was on weekend pass from Infantry School in Oudtshoorn. Willem married Gretel du Toit during my second year at Oudtshoorn (1983).


We met up again with Chris and Susan in the Eastern Cape when Chris was a civil engineer involved with the building of the marina and canals at Martina Martinique at Jeffery’s Bay. We drove around in the man-made canals before they were flooded and I remember Chris telling us then that the project would never work.


Well, it didn’t quite work out as it was planned to do, and today the harbour there has silted up and disappeared – and there is no access from the marina to the sea! The water has to be artificially reticulated through the canal system.


Chris sadly suffered heart failure some five years ago and, despite a heart transplant, passed away some while thereafter. 


Jacobus married Tilly Malan. I spoke at their wedding reception in the Sanlamsaal in the Langenhoven Student centre at Stellenbosch University.


Those were the years of the weddings – not the funerals! And I seem to have become a professional speaker and cut my public speaking teeth at weddings in those early days – the first reception that I acted as MC was for my room mate Glynn Jones (from Tulbagh) when he married Carol Friend in Plattekloof in Cape Town. (They have since emigrated to Vancouver, Canada) Then there was Thomas and Marzeth Moolman who got married in Rawsonville, and Richard and Helena Glennie from Somerset East who married in Somerset West. There were weddings in Paarl and Riebeeck-Kasteel – I simply can’t remember them all!


I saw Jacobus (and Gretel and Willem) two weeks ago when I was down in Stellenbosch, and just last year this time, we celebrated Jacobus and Tilly’s 50th birthdays at a function in Welgemoed. And Nico was there. We also saw each other when we visited at the Wust’s holiday house in Kleinmond. His funeral took place in Stellenbosch today – all too soon!


Tilly’s parents (both since have passed on) worked at the University. Working at the Education Faculty, Mrs Malan often joked about inside information that she had about us as students! They also ran a B&B in Stellies and I stayed there when I went back to study for the Postgraduate Management Diploma in HIV/AIDS in 2004.


That’s the qualification I obtained Cum Laude. I had wanted to continue with my Master’s degree, but then I became ill!  I saw the M.Phil advertised again in last week’s Sunday Times and wondered whether I would have enough time left to pursue studying again? It irks me sometimes when I see jobs and things advertised, and I can no longer participate in the main stream of life!


That’s also the qualification that burst my bubble when I graduated. I stood in the queue with thousands of other students at Coetzenburg’s DF Malan Centre – all dressed in cap and gown, and feeling twenty years’ old like the rest of the crowd. Blending in just like the rest – or so I thought. Until a young lass approached me and said “Oom, sal jy asseblief ‘n foto van ons neem?”!  Uncle, will you please take a photo of us? The years had taken their toll!


Anyway, with the passing of Nico, another bubble in life is burst. If anything, all the funerals of the last few months have emphasized to me the frailty, the fragility and the finiteness of our human life. Sometimes, I get angry at the apparent unfairness and injustice of it all. Just yesterday I spoke to my friend, Sonja van Rhyn, in The Strand. She has also been struck down by a neurological illness. I cried from hopelessness – I just didn’t know what to say or how to make it any easier.  


No one is invincible. Not kings, queens or commoners. Just this week, we were reminded of the anniversary of the sudden death and funeral of Princess Diana thirteen years ago, and yesterday, the father of the Prime Minister of Great Britain passed away suddenly in France. No one is spared!


We are not here on this spaceship Earth forever! The journey ends.


The funerals, therefore, have highlighted to me how important it is for everyone – healthy or unhealthy, firm or infirm, enabled or disabled, old or young – to make the most of every single day, every single hour, every single moment, which is given to us.


Don’t delay, don’t procrastinate, and don’t waste. Before you know, it’s gone to soon. Your candle’s burned out …


Jason Eichacker says:

Time is the measure of all things.

Yosemite Valley is a stark reminder of what came before you and will outlast you. Trees stretch a hundred feet above your head, looking on silently as you buzz past its trunk.

Regardless of what you do, the whole system carries on.

There is a quiet peace: things grow, things die. The system is indifferent to what survives and what perishes as long as each job is filled. The surroundings respond only to your action.

What matters is what you do.

Humans pass lives without making much of them, skipping the important stuff in favour of what is within reach. Like redwoods pushing into the sky in search of sunshine, we have to shed what would hold us back so we can continue to grow.

Make a decision or limit your future.



No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manner of thine own
Or of thine friend’s were.
Each man’s death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee.

(John Donne)

Hung Out to D(r)ie

Monday 24 May 2010: 3 years 8 months on …

As you can see from the countdown clock above, I have been ill now – or at least aware of my illness – for three years and eight months. For the first six months of my “being ill”, no-one knew what was wrong with me. During that period, the medical voyage of discovery took me in Port Elizabeth from the chiropractor, to the physiotherapist, to the neurosurgeon, to the radiographers for CAT and MRI scans, to the neurologist and then in Cape Town at Tygerberg Hospital / Stellenbosch University Medical Faculty, to the head of neurology there.

In comparison to other people (mainly in the USA) with whom I have communicated, that period of six months seems to have been relatively short. It has often taken years for doctors there to diagnose the illness, so we have actually done extremely well in South Africa. Having said that, there is no test for CBD and so it is an extremely difficult diagnosis to make. There are a number of degenerative brain disorders, each with a different name, that present with similar symptoms and cross-over symptoms. It is only upon death, when a brain autopsy is done, that a definitive diagnosis can be made. It is documented that in more than 50% of diagnosed CBD cases, it has been found that the diagnosis of CBD has been incorrect, and that the disorder / disease / syndrome / illness was rather ALS or Alzheimer’s or PSP or Parkinson’s or whatever!

When Professor Carr informed me that he thought that I had CBD, I was shocked and emotional. On that, my second trip to him in Cape Town, I did not expect to come home with a death sentence hanging over my head. Either, he gave me very little information at the time or else I don’t recall much of that visit in his office on 8 February 2007.

What I do remember, is that he and I cried and that he jokingly said that maybe in five years’ time I would come back and sue him for making the wrong diagnosis, or for giving me timelines that would prove to be incorrect. He also did not recommend that I searched the internet for information, as it would not make for “good” reading, and much of what I would see there could be untested research!

However, the internet has been the source of just about everything that I have since researched in connection with CBD. I have often said that dealing with my illness is the easy part – the difficult part is dealing with all the other side shows that accompany the fact that one is ill. One of these is dealing with the medical fraternity.

My intention is not to point fingers at anyone, but the practicalities of being diagnosed with CBD need some explanation.

I have read comments made by family of other CBD-diagnosed patients that once that diagnosis is made, the patient is simply left to die! As mentioned before, the reality of CBD is that there is no treatment and there is no cure. It would appear that many doctors do not have the knowledge to deal with the illness, and, in fact, there is not much dealing to be done. The disease winds its wieldy way, taking with it your ability to walk, talk, think and use your hands, and nothing can be done to stop it.

In Port Elizabeth, a city of 1 ½ million people, I think there are three neurologists. (I am talking about doctors in private practice and I do not know what the situation is at the public hospitals. Their track record would seem to indicate that the situation there is far worse. Just tonight, the Minister of Health is reported as having said that the Health Department is in a state of crisis!) They have an inordinate amount of work and it takes six months to get an appointment to see the specialist. If anything goes wrong in the meantime, he takes queries telephonically from patients between five and five thirty Mondays to Thursday only. It’s like trying to call a radio station when they have an on air radio competition! You just don’t get through. And, come five thirty, you give up and try again tomorrow. And please don’t get ill on the weekend!

(It is easier and quicker to email the help desk at the Mayo Clinic in Jacksonville, Florida. They do research there into, amongst other things, CBD and often, the response is instantaneous! Jacksonville, by the way, is also a twinned city of Port Elizabeth.)

I expressed my concerns about this communication method to the specialist, and now, we have the arrangement that I fax him my queries and when he has the chance, he calls me back.

Thus, it was that I faxed him last Friday morning about the muscle spasms that I have been experiencing in my left leg, from the toes to the buttock, for the last three weeks now. Also, I mentioned the ‘discovery’ that I had made when injected with cortisone and that having taken away the numbness in my hands.

This Monday afternoon I received my call back. There was not much he could say about the spasms but suggested that I play around with the timing and dosage of the pills that I take – my  Pot of Gold – the little yellow tablets of Carbilev that artificially provide my body with the dopamine that my brain cell factory is no longer producing! (My understanding is that dopamine is a chemical that one’s body needs for communication to be effected between the brain and the muscles.)

Give it about a week and see what happens. Many patients with these sorts of illnesses will tell you that dosage and timing of prescribed medication becomes a game of trial and error by the patient and his caregivers. As far as the cortisone injections, well he couldn’t really say anything except concur that it was not feasible to have daily injections of cortisone.

Many people think that, because the illness is so rare, medical professionals are falling over each other to attend to you. The reality is that no one is really too concerned. When we organized a fundraiser three years ago to contribute money to research, I was told, and I understand, that there are far more pressing realities in South Africa than to do research into an illness that one or two people may have!

The reality of simply getting access to medical expertise when dealing with this particular illness (and I am sure many others) is a frustrating and stressful one. Even more stressful is the payment of that access! Yes, finding the doctor and his treatment is one thing – paying him, another.

I don’t know how people who are not covered by a medical aid manage this. But even thinking that your being on a medical aid scheme is sufficient, requires careful attention. I can only recommend that every reader very carefully ascertains their position in this regard. It would appear that understanding your medical aid rules requires a master’s degree nowadays, and when confronted by serious illness, a whole new world of discovery lies waiting for you. An entire blog is required to deal with the intricacies and frustration of medical payments!

Hang, man, even then, living is better than dying until it’s not!

And, yes, until the hangman comes, until then, please forgive us if sometimes we have a hang-up about being dealt this hand that we have simply been hung out to dry.

The challenge for us, at those some times, when you think you have been hung out, is to hang in … and to hang on.

You’ve got to get the hang of it!