Please refer to the following article:
Sometimes, I think that I have been misdiagnosed. It is well documented that in the USA more than 50% of all patients with neurological illnesses have been misdiagnosed.
So maybe my CBD is possibly AD (Alzheimer’s Disease)?
It doesn’t really make much difference, does it? Either which way, there is no cure!
Please read the article below – it makes for some intense soul-searching:
By Alanna Shaikh | 11 March, 2013 00:11 The Times Monday 11 March 2013
My father had Alzheimer’s disease. He started showing symptoms about 12 years ago, and was diagnosed in 2005. Towards the end, he didn’t know where he was or what day it was. But even by the time he died last year, aged 73 and rarely speaking, he still knew his family. I loved him, and spent the last decade watching him disappear.
Dad was not alone. There are more than 35 million people in the world living with dementia. By 2030, that number is expected to have doubled.
Dementia is scary. The large numbers of people who get it, the shaky hands and confused faces of people living with it – they frighten us. We want to believe it won’t happen to us. It robs the sufferer of all memory and understanding and, at present, there is no cure. No wonder we’re worried.
It’s not surprising that we seek ways to reduce our risk of developing Alzheimer’s: an entire industry has sprung up around prevention, selling products such as antioxidant vitamins and brain-enhancing video games. Some of the official advice – to exercise every day, eat a healthy diet, keep the mind active – clearly makes sense. It may even have a preventative effect. But the studies on lifestyle and dementia are all observational, which means “proof” is shaky at best.
Then there’s my Dad, Mahtab Shaikh. He was a bilingual college professor who, for 30 years, taught human anatomy and physiology in upstate New York, where I was raised. His hobbies kept his mind active: chess, bridge and writing opinion columns. He kept to a healthy weight. He ate a lot of chickpeas. He did everything you can do to prevent Alzheimer’s.
I keep my mind active, too, both in my work (in international development) and in my daily life. I watch what I eat; I take my cardiovascular exercise. But that does not mean I’m safe because Alzheimer’s, especially the early-onset type my father had, tends to run in families. Though there are no firm numbers, it is clear that those who have a parent, brother, sister or child with Alzheimer’s are more likely to develop it.
So, at 38, I am getting ready. Instead of just hoping it won’t happen to me, I am preparing in case I get Alzheimer’s disease.
When my father was diagnosed, he did his best to prepare himself. He loved to teach. He was my teacher long after I finished school and left home. He taught me how to drive, play chess and do maths in my head. He taught me bigger life lessons, too, about trust and love. This, then, is his last lesson for me – what it is like to live with Alzheimer’s.
I am focusing on three things, based on what I learnt from my father and what I have read in the medical literature. First, I’m changing the things I do for fun. Second, I’m building my physical strength. Finally, I am trying to become a better person.
When it comes to Alzheimer’s, as cognitive capacity fades, there are fewer options for entertainment. Books are almost impossible to read. Television is too confusing. Chess would be out of the question. This is why dementia carers are trained to engage people in simple, hands-on activities that don’t have a required end point. And, as I’ve seen with my father, the most familiar things are the last to go: as long as he could hold a pen, he could manage an anatomical diagram.
I have realised that, as things stand, there is nothing much that carers could do for me. I’m my father’s daughter – all my hobbies are of the intellect. I read, write and think about global health. What would my carers do – give me charts and graphs to colour?
Hence I’m learning new, hands-on hobbies. I’ve bought myself some good paper and nice pens and am starting to draw, often with my sons, Zach (aged seven) and Sam (almost two), and not that well. I’m learning to knit: I love being able to produce something (even if, so far, it’s only a practice square) out of a ball of yarn. I’m teaching myself basic origami, making small boxes and filling them with gifts for friends. All of which helps me sleep better at night.
The way I see it, the more my hands learn now, the more useful they’ll be later, when my brain can’t run the show. Research shows that people with dementia who are occupied with activities are both happier and easier for their carers to look after. It may even slow the progress of the disease. That’s my goal: to be as happy as I can for as long as I can.
Alzheimer’s is not just mental – it is physical, too. Coordination and balance start to slip. Muscles develop tremors. People become uneasy on their feet and start to move less. This starts a vicious cycle – they lose muscle mass, which in turn makes them move even less.
The better someone’s physical condition when Alzheimer’s hits, the longer they can stay strong and active. There’s not much research to back me up, but my second task is to build muscle.
The third thing I need to do is the most difficult.
I need to become a better person. When he lost everything he had ever learnt, my father’s good heart still shone through. And that’s what I need to learn. I need a heart true enough to survive being stripped of all else by dementia. – (c) The Daily Telegraph
My last check-up in Cape Town was in December last year.
At the time I had discussed with the good professor the painful problem that I had in my left buttock and upper left leg.
Everything else that I experience is uncomfortable but not painful!
We have tried everything – I mean everything! – to alleviate the pain, especially aggravated when sitting or lying down.
He suggested that I should see a specialist in Port Elizabeth who was doing work in this regard.
So when I returned home, I made an appointment to see her.
Only one problem – she is so busy that the earliest appointment I could get was on Thursday 22 August 2013 – eight months in the future!
I asked Dr Britz in Port Elizabeth to see if he could speed up the process and the response I got was that I would be put on a waiting list in case there was a cancellation.
All this time I have just lived with the ongoing pain.
I received a call last month that there was a cancellation and I could visit the next day! As luck would have it, I was busy with a motor neurone disease meeting and was not able to go.
So yesterday the big day arrived.
Armed with my R800 for the consultation, my medical aid card and ID document (which I had been reminded on a few occasions to bring along), I went to see the specialist.
Well, a good lesson for any patient is to discuss the payment with the doctor personally. It so happened that there was a discount involved because I had been there previously. Thank you very much!
The rest would be forwarded to the god of medical aids in this country. I think that soon we will Discover that the funds there have also dried up!
After a thorough examination, it was recommended that maybe a cortisone injection into my hip joint would assist.
It was just a jab of a prick and a little EINA!
Some anti-inflammatory capsules would round off this exercise in self-discovery and trial-and-error medication. Let’s keep our fingers crossed.
By last night, the pain was a little worse and by this morning, even more so.
Let’s hope it will improve as the day wears on.
And no more sitting for the rest of the day … is this what a giraffe feels like standing all day?
©2013 Edward C. Lunnon
Tuesday 25 June 2013: 6 years 9 months on …
Physical: Deuce / Mental: Advantage ED
The month of June is International Motor Neurone Disease Awareness month and Friday 21 June – our winter solstice day – is also International MND Day.
The local branch of the MNDA of SA arranged an awareness breakfast on Saturday and on Friday the movie “I Am Breathing” was screened.
Ironically, I have NOT been breathing – at least not well!
Last weekend (15 June), feeling well, I spent time at the Patensie Citrus Festival. Friday night I visited Eppie and Lande Ferreira (with Matt Sexton, Kings coach, and his family) and I slept over at Pietie and Coba Ferreira (and braaied with them and ex Helshoogte boarder Corne Muller.)
Saturday morning, we did a tour of the Citrus packing sheds and then “did” the festival. Stalls, music, singers, beer tent, people from far and wide … I was humbled by how many people, even here in Patensie, recognise my voice from radio. It is a measure of how the message of neurological illnesses is being spread far and wide. I am most grateful to AlgoaFM for giving me the time each Wednesday for our programme “ED is in wED”!
I returned late afternoon to Port Elizabeth because we had a farewell dinner with the Stapletons – they have headed off to Thailand for the holidays!
Everything changed on Sunday morning – Father’s Day. I woke up with a cough and feeling grotty. For the first time in almost seven years since I have had CBD, I was also ill with something else!
I stayed in bed and wafted through the next few days being Father’s Day, Youth Day, Public holiday, long weekend, Monday, Tuesday … and whatever day it was. I am not quite sure anymore which was what!
I saw Dr Butters and he confirmed that I had bronchitis – the last thing that anyone with a degenerative neurological illness wants (bearing in mind that our chest muscles are affected, we breathe shallowly and we eventually die from lung complications and illness such as pneumonia.)
For the first time since I have had CBD (seven years now), I have been confined to bed (other than when I broke my elbow some five years ago.)
It’s been a test of my resolve and a wake-up call of what lies ahead.
Watching the movie – the story of Neil Platt’s fight with MND – also did me no good. But in between, I went to listen to Elvis Blue sing at Grey, saw the public screening of the movie and attended the breakfast on Saturday. Alan Solomons spoke about the Kings rugby franchise – beating the odds – and it reminded me so much of the fight that we have with MND. Mandy Gurr, a local ex-theatre personality and singer who has fought the illness for some 15 years now also spoke (with difficulty but with so much courage). She leads where we still have to go, and what an example of courage and determination she sets for us who battle with so many different kinds of illnesses that life throws at us.
“Raising awareness” is the term that we hear so often when we talk about illnesses of various kinds. Often the “raising awareness” goes hand in hand with “raising money” because most cases of battling illness go hand in hand with battling finances. Becoming sick becomes a financial battle as well! That’s often why we have these “awareness” days and functions.
But I have also come to realise that unless dread disease and severe illness hits us personally or our immediate family or close friends, then – quite frankly – we don’t give a damn!
We don’t prepare for it, we don’t care for it and we simply ignore it and hide it away. We live our lives as if it will never hit us – others yes, but not us.
It’s only when it comes like that “thief in the night” that we are forced to pay it much attention.
Hence, my motto, for those who have the gift of good health – LIVE.LIFE!
Last night, I went to listen to Prof Cyril Karabus speak about his recent traumatic experience in the United Arab Emirates (Abu Dhabi). (He had been found guilty on “murder” charges in his absence as a result of a young patient of his having died from leukaemia ten years ago when he did a locum there. Now, he was detained when passing through the airport on his way back to SA from a family wedding in Canada.)
In a moment, his life, and that of his family, was changed by the course of life!
I’m starting to feel better. It’s time to LIVE.LIFE again!
©2013 Edward C. Lunnon
Monday 27 May 2013: 6 years 8 months on …
It’s been another busy week, with little time to write. And when I’ve had the time, I haven’t had the energy!
So here comes another skeleton, with hopefully the flesh put in at a later stage!
About 60 – that’s the meaning of the above title and that’s our ages – give or take a good few years in all our respective cases.
“Our” being Neil and Pam Thomson, Anton and Ingrid Scholtz, Alan and Trish Stapleton and Pera and I.
And our connection being that some 20 years ago we started what we called our Investment Club.
We met once a month on a rotational basis at each couple’s home for a meal, and each couple “invested” R100 into the Club – Pera and I put in R100 each. My duty was to invest the monthly amount of R500 and to grow the money so that at some point in the future (round about now) we would cash in our investments and go on a “world cruise” together!
Two ‘hiccups’ occurred – firstly, each couple produced two more people and the group therefore grew from eight to sixteen people. Our children spoke at school about the Investment Club meetings that they attended on the last Sunday (or whichever it was) of each month! Heaven alone knows what their teachers and friends thought about this!
Secondly, at the end of year two, I think it was, when we saw the balance slowly growing in our investment account, we were tempted to draw the money and go away for a weekend together.
So, after that, we never ever gave the money a chance to grow enough for our world cruise, but we did, on an annual basis – round about Reconciliation Day public holiday in December – cash in the funds and spend a long weekend together.
We visited places like Hog’s Back, Katberg, Keurbooms, Knysna, Blanco, Blue Lagoon, East London, St Francis Bay and wherever the following criteria were met:
No self-catering by the ladies, within close driving distance of Port Elizabeth, activities for the adults and the children, inexpensive (at least within the constraints of our Investment Account balance), etc …
Well, we never would have had enough for that world cruise, but we invested tremendously in our children’s social upbringing and in their readiness for life. They learned to climb mountains, read hotel menus, order “passion fruit and lemonades”, play golf, ride horses, stage theatre productions, play carpet bowls, manage becoming lost and a host of other things that one could add to the list.
We all learned to enjoy friends and family and life and nature and good times together.
In the process, we amassed many happy memories and photographs and stories along the way.
Unfortunately, as the years passed by, and we all got older, it became more and more difficult to co-ordinate our diaries and do things together. So, some eight (?) years ago, we finally called an end to our Investment Club.
But, thanks to the labours of Pera, we managed to have a reunion of the adult members of the Club this past Sunday. Someone suggested that the Investment Club be renamed the Pensioners’ Club!
Needless to say, we reminisced (that which we could remember!) and laughed and ate and drank to Life!
Memories are made of this! (and please correct any of the above-mentioned “facts” that may be incorrect!)
©2013 Edward C. Lunnon
Tuesday 7 May 2014: 6 years 8 months on …
Some two weeks ago, the day before I went to Wynberg for the weekend, I received the following email from Mike Proctor-Sims via Lance du Plessis at AlgoaFM:
Mike Holmes and I were fishing last weekend. Standing on a beach, rods in hand, with the fish not biting leads to lots of chatting and Mike came up with something you might be interested in. Holmes and I have a mutual friend who owns and manages the Baviaans Lodge, which straddles the Baviaans and Kouga mountains and various kloofs. Rob is an avid environmentalist and has built his lodge, which borders on the Baviaanskloof Wilderness Mega Reserve, using eco-friendly methods.
Mike was talking about this guy you have on your programme once a week who is suffering from an incurable disease and using his remaining time on earth to discover wonderful places, mainly in hte Eastern Cape. I have heard him on your show once or twice as well. Mike said the guy had mentioned that the Baviaanskloof was one such venue he would like to experience. I have spoken to Rob and he would be delighted to host him — you as well if you can get away.
The main feature is the natural beauty. Cycads, fynbos, indignous forests, streams, Bushman caves and really nice rustic accommodation to are the more sedate features while more challenging are river rafting and boating on the Koaga river and the 4X4 route that runs between his lodge and the main road through the Baviaanskloof, the dirt road joining Patensie and Willowmore.
There is a time factor involved if you are interested in a visit. The weather is good at the moment, neither too hot nor too cold but the cold is imminent.
I suggest you have a look at Rob’s two web sites www.baviaanslodge.co.za and www.baviaans-kouga4x4.com. There is no cell phone signal there but you can E-Mail him on email@example.com and possibly organise a Skype conversation. If you do decide to make the trip both Mike Holmes and myself would be keen to possibly tag along to maybe do a magazine article.
This e-mail set in motion a sequence of events, further e-mails, SKYPE conversations, plans, “unplans”, replans and final plans that saw Sean and I set off for the Baviaanskloof on Saturday afternoon for an overnight stay at the Baviaans Lodge.
Unfortunately, to get all the parties involved to be able to co-ordinate diaries became a mission impossible. Being a “pensioner”, I’m the easy one! Everyone else had “things” to do, but I am dependent on a driver and Sean was only available on Saturday afternoon after work.
My memory fails me often nowadays, and we actually left home twice! Firstly, after filling up with petrol, my petrol card had expired and couldn’t be used! I’d pay with the credit card then, only to find that my wallet wasn’t in the car. So then Sean paid and I’d refund him – we went back home to fetch the wallet – only to find it was under the car seat all along!
We had no sooner left Port Elizabeth along the N2 and I was telling Sean about a warning light that had gone on in the bus to Cape Town the previous week, when the self-same light came on in our Jeep Wrangler! So we stopped at Jefferys Bay and so did the warning light!
Then we went westwards along the Langkloof’s R62 to Kareedouw where we picked up two of Rob’s sons at the school hostel to take them with us to the Baviaans Lodge, our accommodation for the evening and their home.
We went back some two kilometres along the R62 to Assegaaibosch Station and then some 40 km north westwards to the Lodge. Despite only being 40km, the road winds up and down and round and round over the Kouga Mountains and River and so it took us about an hour and a half to get there at about 17h00.
Along the way, the view is stunning and the wow’s became Wows became WOWS! The final descent into the Valley of the Lodge is an OMG WOW WOW WOW!!
No words can do the area justice – hence the pictures attached to this blog should tell the story, and even then, they often don’t tell the full story.
We met Rob at the Lodge, then were shown to our cottage and after unpacking and freshening up, returned to the lodge for a chat, drinks and supper.
No electricity, no TV (to watch the Kings – TG we only heard the score the next day!) but only paraffin lamps, chatter, red wine and a meal fit for the Kings – onion soup, herbed chicken and malva pudding with hot custard made us ready to hit the sack and settle down under the duvets on a dark, quiet, chilly, crystal-clear evening up in the mountains.
The only light outside was the wispy white constellations of the Milky Way – gazillions of shimmering stars, suns, planets, galaxies, shooting stars, and all those other things of which I comprehend so little. It’s all too much for my little pea brain to understand – I don’t even try to understand – but I can and do appreciate the beauty and the Godliness of it all! I wonder sometimes when the time will come when I, too, will be glistening away somewhere up there …
That wasn’t the only flickering.
The little flames in our bedside lamps (real lamps!) and our eyelids flickered in unison. I think our eyelids closed as we blew out those lamps and before our heads hit the pillows! It put two meanings to the term “lights out”!
Sleeping in we did, because we could and, thankfully, had it not been for the crows knocking on the roof that woke us up, we would have been more than just the slightly late that we were for our pre-arranged 9 o’clock breakfast time!
Cereal, juice, yoghurt and eggs, bacon, beans, tomatoes and fritters rounded off with hot homemade buns and filter coffee were set before us and almost sent me back to bed for more sleep!
But we had a trip to do. From the Lodge, a 4×4 entry route northwards into the Baviaans Kloof proper (which runs 120km from Willowmore in the west to Patensie in the east) provides 32 kilometres of unrivalled scenery. We must have covered some half that distance: up and down and over and round and down and up and then, unfortunately, because of the time constraints, a u-turn and did it all again in reverse back to the Lodge! The Jeep did us proud.
This is a unique, wilderness area right on our doorstep. Each twist and turn in the road would reveal different vegetation, depending on whether it was on the windward or the leeward side of the rugged mountains. Grassy plains next to fynbos, winding rivers and streams, cycads and red and white proteas and other members of this unique plant species, geographical features, spectacular kloofs and bird life had us constantly grabbing for our cell phone cameras to take just another pic!
From the highest spot that we went to, we could see St Francis Bay away to the east and the Outeniqua Mountains at George away to the west. In between, luscious green valleys are interspersed by flat-topped plateaus and soaring blue mountain peaks.
Rob, our host, cook and guide, told us snippets about the history, the geology, the fauna, the flora, the endangered species, the secrets, the inhabitants, the rock art, the caves and the rock overhangs.
There is obviously far too much to talk about and to see and to do, and too little time to do it in!
So it was with a heavy heart that Sean and I left at two (with the kids piled in the back to return to school). But we will be back, I hope, to savour some more of this pristine, remote nature lovers’ paradise.
Our thanks are extended to Mike Proctor-Sims and Mike Holmes for conceiving the idea and to Rob le Roux and his family for hosting us and for their warm hospitality. It was a truly unforgettable experience.
ED is in the week EnDing wED 24 April 2013
©2013 Edward C. Lunnon
Tuesday 23 April 2013: 6 years 7 months on …
Sean left school at the end of 2010. I had set it as one of my goals to see him get into matric and to leave school.
That was because I had been told in February 2007 that I would be “severely incapacitated” by 2010 (three years!) and dead by 2012 (five years!).
Well, now it’s 2013 and Phillip is in matric and I’m not dead and neither am I severely incapacitated! I am grateful for this extra time.
I haven’t even set myself a goal of seeing Phil getting to the end of his school career! I have just assumed that I will still be here. I just don’t know anymore!
But, what I do know is that everything we do with Phil at school this year is “for the last time”. The chicks are slowly leaving the nest, and by next year, we will no longer have children at school. That chapter will be closed.
It was the last encounter with Paul Roos Gymnasium from Stellenbosch this past Saturday. (I did my practice teaching at Paul Roos way back in 1979.)
This Saturday is our last encounter against Wynberg in Cape Town, and I hope to go down to the Western Cape for that. Then there’s Bloemfontein later this year and NO I’m not organising any trains for parents to Bloemfontein! I did one in 2007 and one in 2009 and they were the best, coldest, latest, drunken trips to Bloem that I have ever done. Luckily, I don’t think the SA Railways even has spare coaches any more, and I’m not even going to try to find out if they know where their rolling stock is!
But as one door closes, the next one opens. So today I had to fill in some forms for Phillip’s application to Stellenbosch University next year. He wants to do mechanical engineering at my Alma Mater.
It was a scene of déja vu. I could see myself filling in my own university application forms 40 years ago! The difference is that we physically filled in paper forms and made bank deposits – now it’s all “online” and EFT transfers!
We’ll keep our fingers crossed that his application will be successful. And he wants to stay in Helshoogte Residence – she was my very happy home for 6 years. And I was her primarius in 1981.
And while I’m filling in Phil’s application forms on the one side, I am also busy filling in my forms to attend Helshoogte’s fortieth birthday party next month.
Even though it clashes with the reunion in May of my last matric class that I taught at Grey, I certainly won’t miss “Heaven is a place on Earth” – Stellenbosch, my birthplace and place of my education. Born and bred in Matieland!
So I’m trying to juggle times and planes and lifts and accommodation to maximise my attendance at both reunion functions on that second weekend in May. Of all the 52 weeks of the year, why, oh, why are these two reunions on the same weekend? Life can not just be simple, can it? Not even with good old customer service.
Not for the last time, I hope, I headed off to Tavcor Motors this afternoon. Last year, I had some bad service from them with Sean’s car and often businesses mess up even more when they go into recovery mode. Not them!
They have made it up to me in leaps and bounds. I can only thank and congratulate Garrick and his two PA’s, Elaine and Yolande, for the most unbelievable excellent service – way beyond the call of duty – that they have given to me with the repairing of Sean’s Polo that was damaged in the hailstorm outside Graaff-Reinet two months ago. If this is the type of service that they offer then I can only recommend them in future.
And not for the last time have we witnessed the things that we have seen this past week: bombings at Boston; explosions at West, Texas; earthquakes in China; floods in the Eastern Cape …
I will write more later.
©2013 Edward C. Lunnon
Monday 25 March 2013: 6 years 6 months on …
Physical: Deuce / Mental: Advantage ED
ED is in week EnDing wED 27 March 2013
Wed 20 Mar: AlgoaFM; Gym; Sean Old Grey Rugby vs Crusaders
Thu 21 Mar: Human Rights Day; Grey 1st bt Westville in Grahamstown; lunch at Rat
Fri 22 Mar: Braai at home with Clarkes and Stapletons
Sat 23 Mar: Kings vs Crusaders; Michaela’s 21st birthday party at Dexter’s Den
Sun 24 Mar: Lunch at Bluewaters café; Proteas bt Pakistan; Rest …
Mon 25 Mar: Meeting with Melanie (Hospice); Physio; Visit Ackermanns; Rugby Madibaz vs Maties
Tue 26 Mar: Visit Sr Gill (Hospice); Rest …
It was diarised as a quiet week! A week of rest …
But, this has been a busy week and Human Rights Day long weekend. By Saturday, I was exhausted and had to leave Michaela Botha’s 21st birthday party early. Thank goodness for Sean driving me home at ten. They got home at two am, I was told! This has become the 21st birthday party season!
Friday and Saturday were especially difficult for me – I think it’s partly due to the heat (36 degrees in Grahamstown on Thursday!) and partly due to the busy schedule. I’m just not up to all the travelling, late nights, and occasional beers anymore!
Anyway, I woke up late on Sunday morning feeling much better and, after lunch at Bluewaters café, just lazed on the couch – watching the Proteas beat Pakistan in the last of the One Day Internationals. It was also a cool day and hopefully the start of autumn and the approaching winter weather. I thrive on the colder weather!
The long weekend was special.
It has become a lonely world for me. No work to go to in the morning, no daily interaction with other people, no work functions, few and fewer visitors – as the months go by my world becomes a smaller place and it becomes more difficult to understand what my contribution is to this world.
Even when I have company it becomes difficult to share my world with them. They are so busy with their worlds that no longer have relevance for me and so we live in two different worlds. We live past each other.
The daily programme involves Charlie, our Jack Russell, who is my company when I get up in the morning and for the rest of the day. Barbara, our domestic, is there … with the vacuum cleaner! For the rest, I am kept busy by all my medical appointments, hospice visits and whatever other projects that I have found to keep me busy.
I am not good at keeping my own company!
However, there’s my desktop, my laptop, my IPad and my Blackberry that I couldn’t live without.
They are so challenging but so exciting, and when they go on the blink like this weekend (because of the Seacom cable problem in the Mediterranean Sea somewhere between Egypt and France, MWEB tells me) then I have withdrawal symptoms. Thank goodness for DSTV and Discovery and BBC and SKY and CNN and Richard Attenborough’s AFRICA and Great Britain! We live in an exciting and wonderful world!
So, yes, the long weekend was special to have everyone home – Pera from her work, Sean from his work and Phillip from the boarding house at school. Suddenly, there is chatter and laughter and banter and talk in the house again. It makes a huge difference and is even more noticeable when I get up on Monday morning in an empty house again!
This weekend is Easter long weekend and then school holidays – I look forward to having everyone at home once more!
And a huge congratulations to Phillip who was awarded his academic half-colours at school on Monday!
What started out as a possible 24-hour internet problem is now being touted as possibly a two week problem! How did we work in the years BG (before Google)?
©2013 Edward C. Lunnon
Tuesday 5 March 2013: 6 years 6 months on …
Physical: Advantage CBD / Mental: Advantage ED
Aurora Hospital is raising funds by selling a recipe book with local citizens’ favourite recipes. I have been asked to contribute my recipe and a picture of me.
So I headed off to the photographer Beverley Darlow last Monday and that put into motion the need for the Lunnon family to do a family shoot – something we have been trying to do for years!
I eventually managed to organise an appointment for Wednesday afternoon at four thirty. In a major logistical arrangement for us, the four would come from different directions and meet at the studio in Walmer.
But, as luck would have it, at three I got a call from Bev to postpone the shoot as her daughter had been rushed to hospital that morning and was still waiting to be seen!
So, thanks to modern technology, Blackberry and cyber-diaries, the appointment was shifted to Saturday afternoon at one thirty.
Well, cut a long story short, we eventually managed to complete the shoot on Saturday and now await the final product to arrive.
Our home walls would be so different and bare without pictures (photos?). They are the storeroom of our memories and the depot of our past. The work put in to getting them there is often taken for granted but they remind us of our previous generations and us in better days! Just about all the photos that I have seen on walls depict the happy things of life. Despite the circumstances, the pictures usually display smiles and laughter – maybe sometimes even a forced smile!
I would not be able to be a model! Hundreds of shots taken from one direction and then another – just in the hope of getting THAT particular shot: the right lighting, the right smile, the right background, the right clothes, the right composure, the right angle, the right body language …
But it gave me time to think, both during Saturday afternoon, and on Sunday when I went for a long walk along Sardinia Bay Beach in the most sublime weather that we have been experiencing of late,
I thought about the last seven years (almost) of my illness and how it has affected the family. Life, certainly for me, and especially for them, has been very different to that which most other families experience.
Pera has become a bread-winner, a housewife, a Mom and a carer – each one a very difficult job in itself but the four together, juggling between the various roles, become an incredible act to master! Not one for the feint-hearted!
Throughout their high school careers, the boys have lived with an ill father and everything that goes with that. They are preparing for life but at the same time are only too aware of preparations for my death.
I thought of how different it was all supposed to be. I thought of what it should have been like and could have been like. For once, I allowed myself to think back – to look at those old photographs of my memories.
Regrets? Yes, as the song says, “I have a few” … but these I will mention!
I regret that I haven’t been able to be a proper husband and father. I regret that I haven’t been able to fulfil an occupation. I regret that my “job” has been a “pensioner” since age 49 – after all, we as human beings are often defined by the job we do! I regret that I haven’t been able to contribute in every aspect to society. I regret that my life as a healthy and well and productive human being has been cut short. I regret that I haven’t been able to entirely support my family financially. I regret that I have now lost 84 salary cheques (and you can calculate what loss that is!)
I am not feeling sorry for myself and I don’t want anyone to have to do that for me! Because, whilst there are regrets, there are so many other things for which to be thankful. When I have spoken at public meetings, I have highlighted many of the gifts that my illness has brought.
I want especially to thank those people who remember us financially and who choose to do so anonymously. Their generosity and kindness have made that I have so much less to worry about, that we have not wanted and that the boys are receiving their education and preparation for life.
One day, when the family pictures taken this week adorn the walls of the homes of this generation of Lunnons and those to come afterwards, there will be much to unlock in the memory banks that they will create.
After all, every picture tells a story (and a story behind that story that the picture doesn’t tell )!
And regrets? There are ways of dealing with them too. I will write about that next time.