(Un)Lucky 13

©2012 Edward C. Lunnon

Friday 13 January 2012: 5 years 4 months on … Deuce

Tuesday 24 January 2012 … Advantage CBD

I started writing this blog on the evening of Friday 13 January 2012. Other than writing a title I did not write anything else – simply because I started watching, on Sky, the breaking news of the running aground in the Mediterranean Sea of the 4000-odd passenger liner, Costa Concordia, on the coastline of the tiny Tuscan island of Giglio, just off the western coast of Italy.

 It was news in the making – another human tragedy playing itself off on TV. I enjoy watching these real life “reality shows”!  Life is just not, excuse the pun, plain sailing!

And quite frankly I have not been in the mood lately to write much.

Saturday morning was the “Run in the Parks” and after my 5km walk, I was even less inclined to continue writing. By Sunday, I had developed a rash around the top of my left leg, just where my leg brace ends. By Monday, the itchiness was driving me mad – so yet another visit to the Doctor.

More pills (celestamine: 3x day for 5 days) and the aptly-named Stopitch cream were prescribed.

The rest of that week and this week, I have been miserable. Intense heat and humidity, a rash increasing rather than decreasing and the non-use of my brace (simply because it aggravates the itchiness) have all contributed to my frame of mind.

Other than attempting to attend to some administrative things (like paying accounts and filing!), I have not been too productive, and that makes me even more negative. It’s a spiralling whirlpool of emotion and self-pity. And having been ill now for almost five and a half years doesn’t make things any easier.

I’ve become like a computer that just “hangs”. You know the feeling – it’s when nothing happens on the computer; the little sand-timer just whirrs away on the screen but everything freezes. It won’t move forwards and it won’t move backwards. The only solution is to switch off and start all over again. In computer terms, they talk about “re-booting”.

And so these are the times that I have to re-boot myself, and this time it’s taking longer than ever before.

By last Sunday, one week on, the heat continued unabated, the itch was driving me mad, my right leg – for the first time – has shown weakness related to the CBD, and I slipped twice during the week, and the rescue divers had found 13 bodies in the partially submerged wreckage of the Costa Concordia.

That evening, we watched on TV, the movie Apollo 13.

It took me back many years to 1970 when I was in Standard 6 and 13 years old! Apollo 13 was to be the third mission to land men on the moon, but on 13 April 1970, a massive explosion in an oxygen tank put an end to the mission to land on the moon and, from then on, it was also news in the making – how to get the three astronauts safely back to Earth.

Those were the pre-TV days, but I remember, so vividly, my little black Hitachi transistor radio with its brown leather carrying case and aerial, and an earphone to listen to the human drama late at night in bed when I should have been sleeping!

I remember the voices from deep space, whining and hissing on the English programme (there were only three programmes: English or the A station, Afrikaans or the B station and Springbok Radio). The drama of that rescue and the eventual safe recovery of the three astronauts from the Pacific Ocean remain in my mind, and became so real as we watched the pictures for the first time – 42 years later!

(So sorry that I can’t remember what I had for breakfast anymore, or where I put my note book in which I wrote my notes to remind me what to do today!)

Monday morning at 10am saw me return to the doctor – now I’m on Maxaderm and Difluzole and hopefully that will get rid of the rash! At 1pm it was my daily visit to the biokineticist, at 3pm, my annual visit to the neurologist and at 4pm a visit to the psychologist. It’s just another day in the human drama of living with CBD!

(“Well maybe, just maybe, it isn’t CBD – after all you’ve been around five years now and our statistics show that patients with CBD don’t really last this long …” – that’s the comforting news that I get at my “annual” … – “but then it’s definitely some kind of extra pyramidal neurological disorder, and who knows, if you hang around long enough, they may just find a cure … after all, they are doing a lot of research … “.

Yes, it’s comforting to know that we can land men on the moon and bring them back safely to Earth, we can float multi-passenger ocean liners on the sea (and double-decker Boeings in the air, for that matter), and we can save thousands when the liners hit the rocks (and lose just a few) – but, a hundred years after documenting the first cases of motor neurone disease, we are still no closer to rescuing  those human beings who, on their life’s journey, become stranded by that disease. Or have an itchy rash for that matter … 

 (to be continued …)



AlgoaFM Podcast: wED 18 Jan 2012


Broadcast No 92:   
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