You Raise Me Up – THANK YOU!

 

The purpose of my blog site is to raise awareness of corticalbasal degeneration (CBD) – a relentless, progressive, degenerative neurological illness that leads to complete paralysis. There is no cure and there is no treatment. A person with CBD becomes unable to walk, talk and to use their hands. Within a relatively short period, that person dies from pneumonia.

Three years eight months ago, when I became ill, I had never heard of the illness. No one I knew had heard of the illness. Not even my GP had heard of the illness!

Then, three years two months ago, on 8 February 2007, I was diagnosed with that illness.

Why me?

Because, through the talents that God has given me, I am now able to make a difference in other people’s lives. I am still able to talk and type, I am able to use my radio programme and I am able to write my blogs. I am able to raise awareness of not only CBD, but of all kinds of illnesses, disabilities and challenges with which people have to live.

I am so excited that as of today, 29 April 2010, my blog site, within two months, has been visited more than 1000 times! That means there are now so many more people worldwide who have become aware of corticalbasal degeneration.

May I be as bold as to ask you to help me celebrate this milestone by

  • Thanking your Creator for giving you Life

 

  • Thanking Him for giving you good health (if you are fortunate to be in this position)

 

  • Thinking about and praying for someone who has ill-health and for their loved ones and care-givers

 

  • Taking yourself out to visit that person or taking that person out to do something different

 

Thank you for your prayers, your support, your interest, your caring, your concern and your love. You raise me up.

Died and Gone to Heaven?

29 April 2010: 3 years 7 months on . . .

 Having CBD does not mean that you are immune to other illnesses. You also get those mundane, everyday, ordinary sort of things that everyone else around you gets. It makes you ill but, after a visit to the doctor and a script from the pharmacist, it disappears miraculously. And so, in addition to the CBD, it would now seem that my uric acid level has become raised, and this leads, from time to time, to a dreaded gout attack.

So, on Thursday last week, I found myself at the casualty department of St George’s Hospital. No, not for the gout, but this time with Phillip! He had injured his pinkie playing rugby in Grahamstown on Wednesday afternoon. Despite an anti-inflammatory and a strapping, the swelling did not subside. So off we went to the hospital – by the amount of money that I have invested in this private establishment, I may be forgiven if I considered myself a shareholder by now?

An x-ray revealed a broken bone, and that means he will remain strapped and rugby-free for four to six weeks. But, it was while I was sitting there waiting for him, that I could feel that dreaded pain starting up in my left big toe. I had no intention of riding it out again using the standard medication that I have used in the past! I immediately phoned the miracle doctor and made an appointment to see him later, anticipating the dreaded cortisone jab into my bum that would bring instant relief from the pain.

After Phillip had been put to bed, literally and figuratively, I headed off to Dr Rod Butters. It was just the previous week that he had made a home visit at ten in the evening – now when last did you have a doctor make a home visit? It had reminded me of Doris, my late mother, who always insisted that the kitchen be spotless and that all dinner dishes be washed, dried and packed away at night before bedtime, just in case the doctor needed to make an emergency night call. Imagine the disgrace if he had to see an untidy kitchen!

Back to Rod Butters: Out came the syringe and in went the needle…just a slight burning sensation as the Celestone Soluspan Voltaren cocktail went straight into the right cheek. Out came the needle and away went the pain. Isn’t it amazing? If only these clever guys could find something to put in that syringe that would take away the CBD!

But wait . . .

If you have read my blogs, you will know by now that my condition varies considerably during the day and that mornings are the worst part of my day. My body seizes up during the night and, when waking, it takes me a while to get up and get going. My body goes into the foetal position and my arms creep up over my chest. They feel as if they have turned into bags of cement over night. Thank God, it’s not painful – but all very uncomfortable.

It’s also not a pretty sight, and one that only my family and a few others have seen. This is always the most difficult part of the day for me, and the time when I have to fight the tears and the temptation just to pull the blanket over my head and stay in bed. For the rest of the day, most people would not even know that I am ill – the outward appearance belies what is happening underneath the surface. Hence the statements that I often hear “But you look so good!” I look so good only because the panel-beating is so good!

Once I have “defrosted” in the morning, I am ready to face yet another beautiful day that I have been given. That is my reward for getting through the initial discomfort! What I do with the day, with every additional moment that I have, that is my choice.

But …on Friday morning things were different.  For the first time in three years and eight months, I woke up and my arms were not tingling and that heavy cement feeling was gone.

I thought I had died and gone to Heaven! I just lay in bed and it felt so good to be normal again. I WAS able to pinch myself because my fingers were working.

And then I got out of bed and walked normally, without the slowness and the difficulty in moving. This time the happy tears flowed freely, just because it felt so good. How long would it last? Well, the respite was short-lived and by Saturday morning things were back to normal – well, CBD normal for me – anyhow, what is normal anymore?

The question of course is, can’t I get a daily dop of that gout cocktail to ease the CBD symptoms? Will a cocktail a day keep the symptoms at bay? That would put a whole new meaning to having a daily shot! I guess this calls for yet another visit to the neurologist . . . is there any money left in the medical aid?

Heaven is a Place on Earth

19 April 2010: 3 years 7 months on . . .

 

If Heaven is a place on earth, then surely that place must be Stellenbosch. Maybe I am biased, only because Stellenbosch is the birthplace of one Edward Charles Lunnon!

Affectionately known as Stellies to thousands of students, it is the second oldest town in South Africa (after Cape Town) and was founded in 1679 as an agricultural settlement. It has been an important educational centre for over a century and is the home to the famed Stellenbosch University, as well as schools such as Paul Roos Gymnasium, Rhenish Institute for Girls and Bloemhof Girls’ School.

It is at the heart of the South African winelands and is surrounded by majestic mountain ranges, and orchards and, of course, the vineyards crawling over the hilltops for as far as the eyes can see and creeping up the bases of the blue mountain peaks. At this time of the year – autumn – the usually green leaves take on the resplendent colours of red and orange and yellow.

Dorp Street has the longest row of historic buildings in the country and De Braak, the once village green used for military parades is still surrounded by the quaint old buildings of the 17th and 18th centuries (and now also surrounded by the informal traders that have become a part of our South African landscape!)

Besides being my birthplace, I also studied here when I returned from the USA in 1976. I lived in Helshoogte for six years. Helshoogte is not only one of the tallest peaks surrounding the town, but it is also the tallest 9 story residence of some 300 men, of which I had the privilege of being the Primarius – head student – in 1981.

So this is where I obtained my degrees and diplomas and I also returned here in 2004 when I obtained a PDHIV/AIDS Management Cum Laude. I not only received my formal education here, but I made many friends here, many with whom I still have contact today – I guess, they are a part of my informal education that I obtained here (arguably more important than the formal education!) and the basis of many stories and reminiscing that still takes place today.

The whole family is here for the weekend, because Sean and Phillip are playing rugby against Paul Roos. They are part of a contingent of hundreds of Grey boys who are here to play tennis, rugby, hockey, chess, catch fish and whatever . . .

On the way down, with Sean at the wheel again, we spent Thursday night in Knysna. There we caught up with Herman and Sally (friends from my business days) in their magnificent home that overlooks the Knysna lagoon.

The boys have travelled extensively with us since birth, and time spent together in this way has been some of the best quality time that we spend together as a family. When not sleeping, conversation moves from history to geography to bantering and even to the odd occasional mathematical calculation which is thrown in. These travelling times are and have always been special moments for us – whether it has been England, USA, Durban, the Drakensberg, Kruger National Park, Gauteng, the West Coast, the Karoo, the Western Cape or the Garden Route.

Then, on to Stellies. Sean is in the process of deciding where to study next year and so a bit of promotion work for Stellenbosch is necessary from my side.

Firstly, we go to the Neelsie, the Langenhoven Student Centre, which is where, as students, we played bridge, drank copious amounts of coffee and ate many plates of “slap” chips (fries) on cold rainy winter days. These were supposedly inter-lecture breaks, but often served as the lectures themselves!

We are just in time to watch Koshuis (inter-Residence) rugby at Coetzenberg at 17h00. This is the breeding ground of Danie Craven and of South African and Springbok rugby and often the experimental ground for rugby rules that are later implemented around the world.  Some ten games of rugby taking place simultaneously with hundreds of students watching from the sidelines and often on the field of play. The decorum, the dress, the drinks, the comments, are all part of the show – maybe this will guide Sean’s thinking a bit, although the amount of Afrikaans heard is still a concern for him!

Then the 20-minute drive to Durbanville, where we are staying with old university friends, Willem and Gretel, and are later joined by Kobus and Tillie, also old Maties, for the obligatory braai and red wine. And the reminiscing . . . and the stories.

On Saturday morning, we head off back to Stellies, first to watch Phillip’s team and then Sean’s team. Then, it’s the turn of the first rugby team where we learn another life lesson. Despite the odds being against you, don’t give up and you, too, can come to within 5 points of winning the game.

(Travelling is becoming more difficult for me, and on Friday morning, I heard myself saying that this would be the last trip! I need to learn not to give up so easily . . .)

I also met up on the sideline with my eldest sister, Lyn, and her husband, Anton, who have come from The Strand to see us. Then there is ex varsity housemate, Rabe Botha who I haven’t seen for 30 years and I just missed Steve Fourie’s parents (due to my poor memory!) with whom I lodged when I first moved to Port Elizabeth in 1984.  

After the rugby, we have a bite to eat at the Dros. Amongst downtown development and a club/pub/restaurant/eatery/drinkery on every Stellies street corner, part of the Dros has been maintained, including the façade.  It is also the first in what has now become a national chain of restaurants.

In my student days, the Dros was the student name for the Drostdy Hotel. It was one of three popular “watering holes” in Stellies, the others being Tollies and Die Akker (where Neil Thomson – an ex teaching colleague and still at Grey and now Sean’s rugby coach) played with his band Leatherbone!) In those days, beers (LION was the popular choice) were 50 cents each and Tassies (Tassenberg) was the red wine of choice (I can’t remember the price!) They also served a midnight student rump steak and chips for R2.50. This came from my pocket-money, after I had spent my R1000 per annum bursary from AECI on tuition fees of R300 and R600 for annual residence fees (including three meals a day!) A 300-page hard covered economics textbook that I threw out the other day had its price pencilled on the front page – R7.99 (and, by the way, only ten pages of chapter 4 had been separated – the rest of the book was amazingly still untouched after 34 years!)

If you really wanted to splash out, you took your date to the Lanzerac Hotel for a cheese lunch on a Friday afternoon (she always ordered a ginger square!) at the princely price of R2.00. Inevitably, you had to return to res later in the afternoon to get a tie, as ties were mandatory after 6pm!

This has been a weekend of memories. But on Sunday morning, we have to head back to Port Elizabeth, this time via the country’s major arterial route, the N1. It heads north from Cape Town, to Bloemfontein, Johannesburg, Pretoria, Messina and Beit Bridge at the Zimbabwean border on the Limpopo River. We will leave it at Worcester and turn east via Robertson and Ashton, and then link up with the N2 to Port Elizabeth at Swellendam. It is the third oldest white settlement in South Africa, (founded in 1746) and to where my grandfather, Walter Charles, came from England as the postmaster at the beginning of the 20th century. The desk that I am working at now was a gift from the people of Swellendam when he retired there on 1 November 1923.

Some 30 km from Cape Town, at Paarl, the road approaches the Drakenstein Mountains and enters the Huguenot Tunnel, which has been tunnelled through the base of the mountain for easier access to the north. After spending some ten minutes in the darkness of the tunnel, suddenly you see the light shining in from the Worcester side.

It reminds me that no matter what one’s circumstances are, there is always light at the end of every tunnel. Heaven is indeed a place . . .