Hospice Appeal: Last Night of the Proms


Ladies and Gentlemen. Thank you and Good afternoon.

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.

A Whole New World

(c) 2014 Edward C Lunnon

8 years 1 month ill …
Physical: Deuce / Mental: Advantage Ed

Listen here: http://youtu.be/PmvT7B3u7II

I can show you the world
Shining, shimmering, splendid
Tell me, princess, now when did
You last let your heart decide?

I can open your eyes
Take you wonder by wonder
Over, sideways and under
On a magic carpet ride

A whole new world
A new fantastic point of view
No one to tell us no
Or where to go
Or say we’re only dreaming

A whole new world
A dazzling place I never knew
But when I’m way up here
It’s crystal clear
That now I’m in a whole new world with you
Now I’m in a whole new world with you

Unbelievable sights
Indescribable feeling
Soaring, tumbling, freewheeling
Through an endless diamond sky

A whole new world
Don’t you dare close your eyes
A hundred thousand things to see
Hold your breath – it gets better
I’m like a shooting star
I’ve come so far
I can’t go back to where I used to be

A whole new world
Every turn a surprise
With new horizons to pursue
Every moment red-letter
I’ll chase them anywhere
There’s time to spare
Let me share this whole new world with you

A whole new world
That’s where we’ll be
A thrilling chase
A wondrous place
For you and me

Today, for me, was a whole new world, my eyes were opened and there were a hundred thousand things to see!

Nothing dramatic happened! It was just that I received my new spectacles.

Having CBD, one would think, is bad enough and that I would be spared all the other things that may also go wrong in the body. Alas, that’s not the case!

For a while now, I have had problems with my right eye. Last week was a return visit to the ophthalmologist and he suggested another eye test too. That resulted in my new vision today. What a welcome change!

I also lost a tooth last week whilst eating my muesli and that necessitated a trip to the dentist.

I need to thank all the various professional people who assist me in every possible way, especially those in the last week who have come to my assistance yet again. They kept my last week very busy! In between all the other glamorous things that I am so blessed to be able to do, the daily housekeeping can not be neglegted!

* Dr Dean Barclay (and Dr Jan Venter in Dean’s absence) from the Eye and Laser Institute and Bryan Dowley and Tim Seaman from Spec-Savers care for my eyes
* Dr Alisdair Brown who cares for my teeth
* Andre Grundling (Orthotists) manufactures and tweaks my arm and leg braces (my “scaffolding”)
* Grant Randall from Front Cover looks after my hair and beard
* Stuart Dicke, and Julian and Marby Fletcher massage my tired muscles
* Annemarie Salmon keeps me moving in and out of the water at Aurora Hospital
* Sr Gill le Roux, Sr Janice Malkinson and Isaac Ruben from PE St Francis Hospice who visit me regularly and lift my spirits when they start falling.

(Please forgive me if your name is not here – this was just the last week and I will acknowledge you when your turn comes up! My memory is not the best anymore, either!)

So, life isn’t just all the glitz and glamour of the photoshopped pictures which we have all come accustomed to seeing on Facebook.

Nowadays, in our “whole new world” of social media, we tend to display our carefully manicured and Instagrammed lives to each other to view. Let’s not forget that there is a lot of dreary and drudgery (is there such a word?) maintenance that goes into keeping ourselves and our Facebook’s looking good and Twittering for others to see!

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What’s on your MiND?

7 years 11 months ill with a degenerative neurological illness CBD …

Last night, Mother Nature emptied her buckets of ice and snow and water over Port Elizabeth and the Eastern Cape, answering the call to the Ice bucket challenge.

So now, this morning, part 2 of the challenge remains. To whom or what should a donation be made?

The question, of course, is “Why would you want to donate anything?”

Is it because you want to be philanthropic and donate money towards research to eradicate these scourge diseases?

I am yet to be informed that there is any recognized brain research being done in South Africa. Until that happens, I am of the opinion that NO research is being conducted. So why give your money to nobody?

Is it because you want to make my life and that of my fellow twenty-odd ill compatriots a little easier?

So who cares for us? Who makes our lives easier and more comfortable?

Who provides us with the arms and legs and lungs and tongue that we lose?

Who provides the hugs, the care, the love, the psychological assistance, the 24 hour assistance, the medication, the physio- and speech therapy, the crutches, the wheel chairs, the breathing apparatus and all the other apparatus that we need to enable us to live a somewhat dignified life – a life that we, as healthy people, take so,for granted?

In the first instance, we are dependent on our families.

In the second instance, they depend on organizations such as the Hospice Organisation (the St Francis Hospice of Port Elizabeth, in particular) and the Motor Neurone Disease Association of South Africa.

These organizations, who do sterling work, are dependent on public ( that’s your!) assistance.

So, if that’s on your MiND today, go to http://www.hospice-PE.co.za or http://www.mnda.org.za and make your donation there! All the details are there to make it easy for you. No more worries for you!

We thank you for caring and sharing.

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Another Busy Week

 

7 Years 9 months ill ..

Physical: Advantage ED / Mental: Advantage ED

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I Remember …

… My visit on Tuesday afternoon with Sister Janice from Hospice. Sister Gill is overseas in UK after a boat trip from Cape Town to Southampton. She returns this week.

 

… After Ed is in wEd, I visited Bluewaters cafe, then Aurora for physical caring and hydrotherapy. Evening spent at Moth meeting off Kragga Kamma Rd.

 

… Thursday required some more  mental caring from Rev George Irvine and Isaac, and in the evening with Sean at Maritime Motors for the launch of the new Jeep Cherokee.

 

… Friday was the opening of the new sushi bar at Bluewaters cafe and we had supper sans cellphones! Just the four of us with no outside interference! Also had a tea visit with MND patients Keith Biljon and Dave.

 

… Saturday: missed the fun run at Walker Drive due to the cold at 6am! (5 degrees); rugby Grey vs Dale. Sean ended up reffing Seconds and First on the trot (the Union ref did not arrive for the First Team Game!) In the evening, I attended a fundraiser for Friends of MND at Old Grey.

 

… Sunday early braai at noon with friends that continued until 8pm … fun had by all!

 

… Monday: Aurora; Tuesday: interview for Hospice on PEFM 87.6; haircut; rugby at NMB Stadium – Wales vs Kings

 

 

 

 

 

Week of the Proms

7 Years 9 months ill …

Physical: Advantage Ed / Mental: Advantage Ed

 

I Remember …

… This was the week of frustration with GEMS Medical Aid. All I want is my medication. After all, I  have paid into the medical aid since my first salary cheque in January 1982, that’s 37 times! What frustration and thanks to Provincial Pharmacy and DisChem Newton Park for assisting! Thanks to Sr Janice from Hospice for her help, too!

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… For the last 7 years and 6 months, since December 2007, I have been living on and driven and fuelled by my Pot ‘o Gold – Carbilev! From this Sunday I am now on my new fuel – a generic medicine called Teva Carbi-levo. Why? Because my new medical aid says so (it’s cheaper!) The old pills came in a plastic pot 100 at a time – the new ones are blister packed and have to be removed one-by-one from the blisters – ten on a sleeve. Rather stupid, me thinks, when they are for people whose fine motor skills no longer work and who cannot use their fingers!! Let’s just hope the 25mg carbidopa and and 100mg levodopa keep me moving like the old ones ….

… Last Night of the Proms and Banquet was attended by Pera, Gran, Peggy and I on Saturday evening. What a show and spread! Thanks to Gavin Loon, Investec and St Francis Hospice. I spoke at the Sunday afternoon show … see my speech blogged here :

https://edlunnon.wordpress.com/2014/06/01/hospice-heros-thank-you/

While you there also view my blog Zip Zap!

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… I had lunches with my matric maths teacher, Michiel Ackerman, and with Ben Roth

… We started preparing for our HHH40 Reunion in Somerset West on 26/27 September 2014

… We went to the Mumford Revolution show at Old Grey with Stapes and Trish …wow!

WordpressBlog 007… Beer tasting at Barney’s is always a pleasure and add in the view!

… Swimming and exercising at Aurora Hospital and Rehab Centre is now on my weekly routine schedule. Followed by a meeting at Dis-Chem Pharmacy to sort out my pills.

… I used to spend days away from home on business trips – Jozie, Cape Town, East London, George. The best was leaving the Big Smoke and coming home. Today, Sean flys to Jozie on his very first business trip. Be safe!

Welcome to the world of delayed flights, waiting, airport lounges and company beers! Enjoy!

Haha … And the first flight IS delayed!

… And it’s time for another MND meeting at Old Grey … With Iron Man, motivational speaker , ex house mate and colleague Alec Riddle!

Hospice Hero’s – Thank You

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Good afternoon, Ladies and Gentlemen

A NYC Taxi driver wrote:

I arrived at the address and honked the horn. After waiting a few minutes I honked again. Since this was going to be my last ride of my shift I thought about just driving away, but instead I put the car in park and walked up to the door and knocked.. ‘Just a minute’, answered a frail, elderly voice. I could hear something being dragged across the floor.

After a long pause, the door opened. A small woman in her 90’s stood before me. She was wearing a print dress and a pillbox hat with a veil pinned on it, like somebody out of a 1940’s movie.

By her side was a small nylon suitcase. The apartment looked as if no one had lived in it for years. All the furniture was covered with sheets.

There were no clocks on the walls, no knickknacks or utensils on the counters. In the corner was a cardboard box filled with photos and glassware.

‘Would you carry my bag out to the car?’ she said. I took the suitcase to the cab, then returned to assist the woman.

She took my arm and we walked slowly toward the curb.

She kept thanking me for my kindness. ‘It’s nothing’, I told her.. ‘I just try to treat my passengers the way I would want my mother to be treated.’

‘Oh, you’re such a good boy, she said. When we got in the cab, she gave me an address and then asked, ‘Could you drive
through downtown?’

‘It’s not the shortest way,’ I answered quickly..

‘Oh, I don’t mind,’ she said. ‘I’m in no hurry. I’m on my way to a hospice.

I looked in the rear-view mirror. Her eyes were glistening. ‘I don’t have any family left,’ she continued in a soft voice. ‘The doctor says I don’t have very long.’ I quietly reached over and shut off the meter.

‘What route would you like me to take?’ I asked.

For the next two hours, we drove through the city. She showed me the building where she had once worked as an elevator operator.

We drove through the neighborhood where she and her husband had lived when they were newlyweds She had me pull up in front of a furniture warehouse that had once been a ballroom where she had gone dancing as a girl.

Sometimes she’d ask me to slow in front of a particular building or corner and would sit staring into the darkness, saying nothing.

As the first hint of sun was creasing the horizon, she suddenly said, ‘I’m tired. Let’s go now’.

We drove in silence to the address she had given me. It was a low building, like a small convalescent home, with a driveway that passed under a portico.

Two orderlies came out to the cab as soon as we pulled up. They were solicitous and intent, watching her every move.
They must have been expecting her.

I opened the trunk and took the small suitcase to the door. The woman was already seated in a wheelchair.

‘How much do I owe you?’ She asked, reaching into her purse.

‘Nothing,’ I said

‘You have to make a living,’ she answered.

‘There are other passengers,’ I responded.

Almost without thinking, I bent and gave her a hug. She held onto me tightly.

‘You gave an old woman a little moment of joy,’ she said. ‘Thank you.’

I squeezed her hand, and then walked into the dim morning light.. Behind me, a door shut. It was the sound of the closing of a life..

I didn’t pick up any more passengers that shift. I drove aimlessly lost in thought. For the rest of that day, I could hardly talk. What if that woman had gotten an angry driver, or one who was impatient to end his shift? What if I had refused to take the run, or had honked once, then driven away?

On a quick review, I don’t think that I have done anything more important in my life.

We’re conditioned to think that our lives revolve around great moments.

But great moments often catch us unaware – beautifully wrapped in what others may consider a small one.

 Tonight, when you leave this hall, you will have the opportunity to drop a donation into a box at the door – to give a note to St Francis Hospice.

 Remember: that small moment in your life is a great moment in the lives of 600 odd people who live with life-limiting illnesses here in Port Elizabeth and are cared for by St Francis Hospice.

 I know that it’s a great moment because I am one of those people. I live, albeit for a while longer, with corticalbasal degeneration, a degenerative brain disease.

 My name is Ed Lunnon.

 On behalf of my fellow patients, I wish to thank Richard Cock and his musicians for the entertainment; St Francis Hospice for the caring, and you, the audience, for turning small moments into great ones today.

See 

ED is in week EnDing wED 4 September 2013

TV Recording of Hospice Ad

Seven years on …

Advantage ED!

The week that was:

  • Wed 28 Aug: AlgoaFM broadcast; Bluewaters Cafe; Blog site; massage
  • Thu 29 Aug: Nadine visit; photo admin; shopping at Incredible Connection; filled in health forms
  • Fri 30 Aug: Visit to nutrionist; haircut; sorted pix on computer
  • Sat 31 Aug: Sean’s NSRI potjiekos party at home; more pix
  • Sun 1 Sep: More pix
  • Mon 2 Sep: Massage; prepared speech for Mpkweni; opthalmologist for right eye!
  • Tue 3 Sep: Video recording for Hospice at home; Visit by Sr’s Gill and Janice; finished speech; PeFM guest