Tony Walsh recited his poem at the Manchester vigil tonight –
Tony Walsh recited his poem at the Manchester vigil tonight –
Today, the day afterthe bomb blast in Manchester, I took my Rooi Gevaar (Red Danger) on its longest trip yet, some 5 km through Newton Park to my hairdresser and back. Thanks to Grant for keeping me looking good.
Some comments from a disabled person:
Pavements are broken, uprooted, concrete is broken
Piles of rubbish and builders rubble are piled up
Unmowed grass verges
Cars parked on pavements
Curb ramps on one side not matched on the other side of the road
Pavements dug up with no passage way
No concrete walkways at all
Stop over the white lines on the road leaving no pedestrian crossing
Ride before lights turn green and after they turn orange and red
Don’t know how to navigate traffic circles
All in all, took me 15 minutes there, little nervous and shaken, and twenty minutes home.
Now I better recharge the battery! Range is 40km
This is life in the not so fast lane …
Ps. I miss my X-Trail
My name is Ed Lunnon and I am a patient cared for by the St Francis Hospice of Port Elizabeth.
Today, we witness the best of the human condition, through song and music and dance.
Let’s give Richard and all the artistes a very warm round of applause.
But, ladies and gentlemen, just as we witness the best of the human condition, we are all only too aware of the worst of the human condition – the elephant in this room:
death through cancer, TB, HIV/AIDS, and Motor Neurone and other degenerative brain diseases.
Just a few months ago, we witnessed the very public suffering, death and funeral of rugby Springbok Joost van der Westhuizen who had motor neurone disease.
Let’s see by show of hands … How many of you have been touched personally, or have had a family member or close friend touched by one of these illnesses in the twelve months that have elapsed since we attended the last Last night of the proms?
Yes, sometimes it takes the worst of the human condition to draw out the best of the human condition in us … That of generosity, compassion, love and charity towards our fellow human beings.
So, in these few minutes, I would appeal to you to help the Port Elizabeth St Francis Hospice to help us, who battle the ravages of these illnesses, which for you may be just a name, but for us, is our reality each and every day of our limited lives.
I challenge you and you and you to empty your purses and pockets as you leave this hall tonight and to fill the coffers of the Hospice placed at the various exits.
This past year it was your parent, your spouse, your sibling, your child or your friend.
This coming year, it may be your very self!
Remember, these diseases spare no-one .
May I thank you in advance for your kind generosity?
Baie dankie, muchas gracias, merci, enkosi kakhulu , thank you very much.
Watch live here
Ill 10 years 6 months / (c) 2017 Edward C Lunnon / Deuce
Just a few weeks ago, Phillip Weyer-Henderson gave me a lift home from the Old Grey Club in his Audi R8. A few of us (from the Class of 1984 – my first class at Grey) had lunch together at the Club.
It was the last time that I saw Phillip alive. This morning I was informed that he had been killed, together with two other Old Greys, in a car accident.
Just a few years ago, we had lunch on their farm, Toekomst ( read my blog by that name https://edlunnon.wordpress.com/2010/10/12/toekomst/) near Jansenville. Their daughter Amee had asked me to talk at Collegiate.
We spoke about the Toekomst (The Future), about being positive!
Since then, they have lost their mother, Liese, in the farm dam.
Now, their Dad in a car accident.
I have given up on counting the losses of the last few years: last week it was Shane Fourie, Sonja van Rhyn, Willem Engelbrecht, Ingrid Scholtz, John Clarke, Andrew de Wet, Rob Stear, Pam Thomson, …
After Liese’s death, Phillip regularly invited me to come and visit him on the farm. I kept on postponing the visit. Now it’s too late!
Life and death – the two sides of the coin. I will write later.
© 2017 Edward C Lunnon | Deuce | I’ll Ten years 6 months
I was born in Stellenbosch in 1956.
I completed my tertiary education at the University of Stellenbosch between 1976 and 1981.
I was the Primarius of Helshoogte in 1981.
I did further postgraduate studies at Stellenbosch in 2004.
I did my practical teachers training at the Paul Roos Gymnasium in 1979.
That is my connection with Stellenbosch, and through Stellenbosch I am connected to a multitude of people.
In 1982 and 1983 I completed my military training at Oudtshoorn Infantry School.
There I met Andre van Staden who had also completed his studies at Stellenbosch.
In January 1984, Andre and I sat in the half moon of chairs in Rector Dieter Pakendorfs office at Grey High in Port Elizabeth. We were two of the fifteen who started our teaching careers there.
I left teaching in 1988 and a few years later Andre was promoted to deputy headmaster and later Headmaster of Pearson High Scool in Port Elizabth.
Andre and Adia had two sons who attended Grey in the same classes as SeAn and Phillip.
That is my connection with Andre van Staden.
Now Andre has been promoted to Rector of Paul Roos Gymnasium in Stellenbosch. It is the only school other than Grey High in the country that has a “Rector”.
That completes the circle.
Congratulations, Andre on this wonderful appointment. You leave behind you a legacy of achievements and a horde of pupils who will be forever grateful for your educational finesse and Afrikaans tuition.
I wish you and Adia all of the very best in the Western Cape.
11 years 5 months ill | ©2017 Ed C Lunnon | Advantage CBD
Eleven years ago, on 8 February 2006, I was diagnosed with CBD, a terminal, incurable neurological illness.
Imagine the following: you have a fancy motor car that suddenly starts shaking and shuddering. You take it to the garage, ask the mechanic to diagnose the problem and to repair the car, BUT the bonnet (the hood) is welded closed and cannot and may not be opened.
So, together with other mechanics, they take the car for a drive, observe the shaking and shuddering in various situations, and eventually tell you what they surmise the problem is. It’s not the wheels, nor the shock absorbers or the springs, nor the tyres. By default, it can only be a problem with parts in the engine, but because they cannot open the bonnet, they are unable to repair or replace the faulty parts. So they put pieces of foam rubber in various places to curtail the shakes, more padding in the seats, and tell you to drive slower and shorter distances. Eventually, the make-shift repairs fall apart, and the car stops working.
Similarly, my body started shaking and shuddering, and by default, eventually,I was diagnosed with a neurological illness, a problem with the nervous system of my body housed in the brain and which cannot be accessed, repaired or cured. There are a number of these neurological illnesses, each with a name to describe the symptoms that are observed, and with various make-do medications that are applied to make the ride a little easier. But, eventually, all the makeshift repairs no longer suffice and my body stops working and I die!
(In the USA post death brain autopsies indicate that more than 50% of pre-death diagnoses are incorrect! In SA, post-death brain autopsies are not done.)
Let’s discuss the analogy further.
When my car begins to give problems, I have to pay for the car to be tested. Furthermore, I pay for the new parts and all the labour. And, as the problem continues, I have to pay more and more out of my pocket in order to try and get the vehicle to work. If you are wealthy, you have no problem in paying, and maybe even just throw away the old and get a new!
For their vehicles, some people have a maintenance agreement, and certain things, maybe not all, are covered by the contract. If you can prove it was a manufacturers fault, you may be able to claim from the manufacturer or dealer. The “maybe not all” parts are paid for by yourself, and if you don’t have enough money, you have to beg, borrow, or steal!
Some vehicle manufacturers have an ombudsman or a club or group that you can discuss your problem with and get advice, but they are under no obligation to pay for your repairs or replace your vehicle. They simply give advice.
Similarly, when my body plays up, I have to pay the medical costs. Some people have medical AIDS that assist with certain costs and possibly not all. The balance comes from your pocket, your family, your friends, or some or other benefactor.
If you feel aggrieved by the situation, you may approach the ombudsman, or possibly some group that has been established to help you with a particular problem.
If there is no such group, then some people create a group of their own, to help themselves and possibly other people with similar problems in the future.
The reality in South Africa is thar medical AIDS do not have to cover neurological illness costs and normally don’t.
The Motor Neurone Disease /ALS Associationof South Africa is a voluntary charitable organization to provide assistance where able, but is under no obligation to pay your bills.
If you don’t like what they do, you start your own assistance organization, such as the J9 Foundation, Family Trust Fund, The Hospice, Friends of Motor Neurone Disease Association and many other such voluntary, charitable associations.
But, ar rhe end of the day, none of them are obligated to assist you. You are responsible for your Medical care and costs.
In most civilized first world countries the government provides health care for its citizens.South Africa does not fall into this category. So make sure thar you have made provision for your medical costs, especially if they happen to be a costly affair such as MND.
In reality, and from a financial perspective, one can only hope and pray that you are taken sooner rather then later. Besides having to watch over the medical concerns, which are horrible in themselves, the financial aspect creates a further milieu of concerns.
I have read a lot of vitriolic notes regarding MND over the last few days. (See my own previous blog).
Once I have garnered more strength o ver the weekend, I will write again.
Watch this space.
In the meantime enjoy PJ Powers and remember that, unfortunarely, we are not a World in Union.
Today, we had one of our infrequent MND support group meetings at the PE St FranciS Hospice.
And, I am angry!
The land, indeed the world, is awash with tributes pouring in for the late Joost van der Westhuizen.(if the media is to be believed!) And rightly so!
Don’t get me wrong. Death is so final, so permanent, and no one, except those nearest and dearest, experience the loss and the sadness so intimately and so emotionally. We all experience it at some time or another, but never all at the same time. Don’t tell me you know what I feel, or how I feel, or I am so sorry about your loss , we share in your grief … A few days later, all is over and forgotten and the closest are left filling the emotional gaps.
So, as much as we can, we, too, extend our sympathies and condolences to Joost’s family and friends. We say we are sorry. We know how it feels to lose loved-ones to death.
But why does it take a Joost to get ill or die? Why an Ed or a Bongani or a Dave or a Mandy .. Before he became ill, I did not see the same enthusiasm about or interest in MND. After the memorial service on Friday, I guess it will all disappear!
I am angry! The President and his ministers issue statements like gone roo soon, loss for the country, he set an example, he led the way, Captain Courageous, … but why not the government? The Caprains of Industry? Surely, there’s is the responsibility to lead the way in finding a cure. In helping us, in making life easier for us, in eradicating this scourge from our society. Why should it have been Joost’s responsibility?
After all, he’s a man. He’ just a man.
I am angry because our government turns a blind eye. They can’t look after 94 psychiatric parients, let alone the 240 odd MND patients in this country. There is no money budgeted for MND research – in fact, there is no research facility in the land. We are dependent on family, friends, corporate donations and the goodwill of the community. Not even medical AIDS assist because these Neurological illnesses are not defined as prescribed minimum benefit illnesses in terms of health legislation.
I am angry because come next Monday, I will still be cared for my my family and my health careers from the Hospice, I will still be fighting for my medication to be paid for by the Government Medical Aid. There will still be no meaningful research done in SA, there will be no cure, and we will be learning to cope with this death sentence that has been dealt us, without any meaningful assistance from the government.
I am angry because despite all the good words about Joost (and I guess they are all true – I don’t know, I never met the man!) nothing is said about Bongani, a member of our group who also passed away this month. Surely, living with MND is difficult enough, but couple that with living in a shack, not having electricity or running water, or a plate of food and only the hands and love of his wife Ro assist him. I will never forget the sight of his wife feeding him crum for crum from our plate of sandwiches …surely he should also be saluted for his courage , his fortitude, his perseverance . In many ways, he was a far bigger fighter than Joost – a Captain Courageous.
I am angry that the J9 Foundarion, despite being lauded for its community assistance, did not respond to correspondence regarding sufferers plight and their needs. They selectively assisted people to encourage their marketing needs. What research have they undertaken, I most respectfully ask, and howdoes that help me or Anne or Mandy or Bongani or ….?
I am angry because the so called awareness of MND that has been generated by the Foundarion still leaves the general public including yourselves in the dark. Even the press releases were contradictory in terms of the illness.just ask yourself how much do you know now about MND that you did not previously know?
I am angry because I guess it’s just not your problem. It doesn’t affect you. After all, you don’t have MND! Joost was chosen, and Dave and Anne and Keith …
I am angry because despite Joost’s team talking on TV about the MND research wing named after Joost, in reality there is nothing, not even a Welcome desk at any facility in the country.
I am angry because thousands of women (and men) will attend Loftus Versfeld tomorrow. Because they knew Joosr?, no! Because he helped them, no! Because of his exceptional athletic ability, possibly! Because of his good looks, his piercing blue eyes, his erstwhile six pack, his abs, many! Let’s face it, ugly people like myself and others start off at the back of the queue. Life is just easier for the bold and the beautiful. I am angry.
Will those people attendingcontribute to MND research, help other parients, set up trust funds, build clinics? I doubt it! I am angry.
Where are our so-called Friends when we need them? If there’s money to be made they’ll be there. Otherwise the ll grace rhe pages of our newspapers and organise more meetings and make more speeches and take more pictures!
Yes, I am angry!
Mandy Gurr- Snymann has been trapped in her body for 17 plus years. She posts the following on her Facebook page yesterday:
“As a fellow Motor Neurone Disease patient, I thank God for coming to take Joost home. At last he is free from the body that had become a jail … free from this thief of an illness that is cruel beyond words. May his soul rest in peace. I pray that God will comfort his children, family, friends & carers, bringing them peace. I send my love & thoughts to MND patients that I know & think of those we have lost with fondness xxx
I have a right to be angry!
So the Chinese – don’t you just luv ’em – they built this wall together with the North Koreans as a prototype for you, Donald. You can do it, Donald, they said, you can do this by you and yourself. No need to bring in Mexican labour, may just have to Bill (that’s not Hi-la-ry,s husband) the Mexicans.
I luv ’em, Donald, like you, but we gotta stop the drugs coming over the Red River in sombreros and gondolas. Let them head for Europe and we’ll tax each one that passes by Key West on their water boards.
You, as the President of the United States and, I , Xi Jinping, the leader of the People’s Republic of my Tjaina, we gonna make America great again, and maybe we can get Vladimir to Put-In nice Russian ladies. But not Melania, she has a degree in copy writing from the University of Ljubjana, and she’s gonna remain on Broadway.
Put-in is becoming a Vladi nuisance anyway! He’ spending too much time in the Gym. I guess he is also a Discovely member and has to build up his Voyager miles for his next trip to the ISS -International Space Station, Donald, that’s not to be confused with ISIS now!
But we can’t have the Russians committing Crimea all over our our beloved mother lands. (By the way has Barrack found his Birth Certificate to prove his mother’s a Hawaiian).
I think the FBI has mislaid my tax returns and Laduma’s birth certificate! They’ll blame it on my Russians hacking again – but they destroyed the documents when they were checking Hilary’s hard drive. No, Donald, don’t get confused now – that’s not Bill I’m referring to … My interpreter gets these things wrong.
Maybe we should resort to sign language and get that South African that’s so good at sign writing. I’ll ask the Guptas to arrange.
So yes, Donald, sometimes I think I’m going to like you and then I don’t. Sometimes I think I’m not gonna like you and then I do. BUt Maggie and You are gonna get along – no not Maggie – that was the other British woman whose father owned a grocery shop. I didn’t check if she came from Portugal or Greece. Hope we don’t have to send her back!
No, it’s May I was referring to – the one in Red that came to tour yourWhite House. For a moment rhen I thought she had taken the Red Carpet, but it was to impress the communists on Red Square. Good surname she has – fits in with our May Day celebrations!
I’ll have to tweet her to wear it again! She really twittered in that Colour. And maybe she can wear it when she and you come to visit the Queen later this year. It matches your hair Colour, too!
So, Donald, I have to BRexit now.
But, please come fetch your wall …