14 May 2010: 3 years 8 months on . . .
Last Saturday evening, after we had watched Grey Boys’ High 1st rugby team comprehensively beat Wynberg Boys’ High, a large number of supporters, visitors and Old Boys gathered in the Centenary Cricket Pavilion for after-match drinks, and to watch the Sharks beat the Stormers on TV!
Ed Hurr, Grey Headboy of 1956 (my birth year!) and father of David Hurr, a pupil in my first 1984 class and now a member of the Old Greys’ Committee, was there. He reminded me of a conversation of two years ago in which we discussed my illness and the prognosis that I had been given. “You don’t look any worse than then” he said, “man, it’s all in your mind!”
Corticalbasal degeneration is a relentless, degenerative neurological disease that eventually prevents you from walking, talking and using your hands. It also has many cognitive effects, such as short-term memory loss and the inability to process instructions. The medical fraternity is unable to tell us what causes it. There is no treatment for this devastating disease. And there is no cure! It is a terminal illness that leads to death, normally as a result of pneumonia. I have this disease, and, it is a disease that, as Ed Hurr said, “It is all in my mind”!
In February 2007, I was told that I had three years of quality life left before I would become severely incapacitated. The three years have passed and I am now three months into my reserve tank. No-one knows how large that reserve tank is. Thank God, I am not severely incapacitated. The regression has taken place far slower than was initially envisaged. Like watching a child grow, the daily changes are not so evident, but when seen over a period of time, the changes are significant. Though others may not see it outwardly, I am only too aware of how the changes affect me over the passing months.
Three years ago, for example, I was a proficient typist on a computer keyboard. I had taken typing as a school subject when I did grade 12 as an exchange student in Oklahoma, USA in 1975. It enabled me, in the computer era, to do speedily with ten fingers what most other of my contemporaries did very slowly with one or two or maybe three fingers. In fact, it was the first warning bell of the illness when I noticed way back in September of 2006 that two of my left-hand fingers were not hitting the correct keys.
Now, I am down to using my right hand fingers and only still my right index finger to press the “Caps Lock” and the “Shift” keys! Even then, the messages don’t get through to my fingers in the right order, so what I think I’ve typed, isn’t what I see on the screen! So, I constantly have to go back and correct the errors. It’s such a painfully slow process but it’s better than writing. I am left-handed, so writing is reserved only for those embarrassing moments when my signature is required.
Ironically, when I was running my business, one of the products that we looked at marketing was a voice-recognition package Dragon Naturally Speaking. In order to sell it, I started teaching myself to use the package, not knowing that a few years down the track I would be forced to use the package myself!
Another “it’s strange but true” phenomenon also involves my hands and fingers. Many may not know that I am (was?) able to play the piano and organ. I find music very soothing and uplifting and sometimes now, when I am feeling a bit down, I will sit in front of the piano and play with my right hand. Strangely enough, my left hand fingers will “kick in” and, involuntarily, start moving and playing and pressing the right notes! It’s still all there in the mind.
In June 2007, I retired at the age of 50. Many people would give their eyeteeth to do that! At this stage, I have given my left hand. Of all the things that this illness imposes on me, the most difficult thing has been to come to terms with not going to work, not having that sense of purpose, not having those people around you, not being able to make a contribution. I’m not sure if this is a man-thing, but your work, to a large extent, pretty much defines you as a person. When asked to describe yourself, your job or vocation is often the first thing that you use in that description.
South Africans seem to be very aware (all in the mind!) of that status “thing” that is brought by the car that you drive and the job that you do. When I meet strangers, one of the first questions that I am asked is “So what do you do?” – by that I assume they want to know what work I do! If I answer that I am retired, the usual response is a glint in their eye and the next question is “So how did you make your millions?” As the youngsters say today – LOL or LMAO!
If I say that I have retired for medical reasons, the conversation usually moves into the realms of the CBD. It’s not something that you just see, and I have learned to hide many of the tell-tale symptoms. And it’s not something that I always want to speak about – simply because it stifles the conversation and turns light-hearted banter into a very serious discussion. So often, I simply answer that I am in the retirement industry! It’s an honest answer. But one that possibly creates the assumption that I sell assurance policies and leaves the inquirer a bit wary of becoming my next customer. Or, once again in the South African way (or is it a human trait?), an insurance salesman does not carry the same merit as a millionaire. So – NO further questions are asked!
Shortly after retiring, through Dave Pattle, an ex-business associate, I met up with Bill Godfrey and Peter van Kets from East London. In December, 2007, they were planning to row across the Atlantic Ocean in the Woodvale Rowing race (2007/2008) from La Gomera in the Canary Islands to Antigua in the Caribbean. I assisted in a small way with trying to get some publicity going in this area. Most publications were not interested at the time. When they launched their boat, Gquma Challenger, in Port St Francis, it was only when the female reporter from the weekly Kouga Koerant heard from me that some of the rowing was done in the nude that they got some publicity. The posters on the poles in Humansdorp read “Kaalgat oor die Atlanties” (Naked over the Atlantic)! Forget about the intrepidness of rowing 5483km unsupported across the ocean – but put nakedness in the press and it becomes another sexy story to tell. It’s all in the mind!
Well, as the first South Africans to compete in that race, Bill and Pete rowed in the doubles section. They accomplished their dream which was to win the race and bring the trophy home to South Africa.
Their story was then widely reported and televised, and they released a video “90 minutes Closer to Antigua”. It is a story of being tested physically, emotionally and spiritually whilst battling violent storms, fatigue, blisters, dehydration and loneliness.
And as Bill told us, at functions that I arranged for him to address Grey Junior boys and a group of Port Elizabeth businessmen shortly after their return to East London, in the final analysis of making it to the end and beating the odds, it’s all in the mind! “If we can do this you can do anything” wrote Bill in my copy of the DVD.
It is the story of human endeavour that transcends the ages – whether it is rowing the Atlantic, scaling Mount Everest, walking the Sahara desert, swimming the Arctic Ocean, or battling illness or disability or the problems that Life throws at you.
It is the story that one reads in any book on Life and its challenges and problems – how you deal with it in your mind is half the battle won. For me it has been a simple choice – either I sit in the corner and mope, or else I get on with Life and enjoy each day and what it offers me.
My philosophy is simple – what idiot watches a show or rugby game and does not enjoy it because he knows and is concerned that it will come to an end? He watches and enjoys every minute of the show, right up until the final curtain falls or until the final whistle blows.
With God’s help, my biggest struggle – that with CBD – will be my greatest victory! It’s all in the mind.
(Two years later, in 2010, Pete has once again competed in the 2009/2010 race – this time alone! His completion, just weeks ago, of that race in 70 odd days, was covered extensively on MNet (Carte Blanche) and TV3 last week). Well done, Pete (and Bill).