Saturday 24 July 2010: 3 years 10 months on…
Some people must think that I am the world’s biggest hypochondriac. I am often told “But you look so good!” My reply is usually along the lines of “I wish I felt as good as I supposedly look”.
CBD is a movement disorder. It does not affect my appearance but it is a degenerative brain disorder that affects my movements. The contact between my brain and my muscles is affected and, over time, the brain loses the ability to control my muscles.
So, thank God, I have no pain. But each movement that I make with my hands, arms, feet and legs –every word that I speak – is no longer something that “just happens” – it is a calculated, conscious act that I make and which requires more and more energy. Hence the slowness and the tiredness.
Unfortunately what we see is not always what we get. Appearances often belie what is underneath, and appearances often lead to perceptions and perceptions often lead to stereotypes and labels. And thus a lot of our beliefs and actions in this world are based on appearance.
“But you look so good” reminds me of the advert for Farmer Brown chickens: They look so good ‘cos they eat so good! Maybe, that’s why I still look so good.
And I “eat so good” because of my good wife, Pera, food-lover and cook of note. In times of illness, old age and disability, we concern ourselves about the person affected. Often, we neglect to think about the so many people out there who become the “carers” and who also become affected and who carry burdens that we also do not see. We need to be more aware of the caregivers in this world and to support them in the vital and frequently unrecognised role that they play.
Both my parents died at an early age, and so I forget that many of my contemporaries are now at a point where they have to care for elderly parents. Just in this week, I had a conversation with good friend Trish Stapleton, wife of Alan, an ex-teaching colleague of mine. Over twenty-five years, the Stapletons have always been there for me and for us – whether it’s been the Christmas dinners, the parties, the Investment Club, the braai’s, the calls, whatever … they have just been there!
But they have also been there, especially, for Trish’s parents, Lane and the late Charles Stewart. They have been such an example – in both word and deed – to so many of us of caregivers extraordinaire. Thanks Stapes and Trish – and get well soon, Lane!
As this disease takes its toll on me, it also takes its toll on Pera and the boys. They bear the brunt of the “off-the-air, out-of-the-public-eye, not-so-nice” side of me. Let us not forget them in this journey, and let me assure them that, despite the outward appearance sometimes, they have that very special place in my heart. You are the wind beneath my wings. Saying a mere thank you to you, I guess, will just never be enough!
And talking of journeys and appearances, I return to my own journey of our student tour through Europe in 1981 about which I have already written in I’m Legal Now.
From Switzerland, we travelled by train across and through the Alps into Italy where we visited Milan, Venice, Florence, Rome and Brindisi. I have not been back there since 1981 and I’m not sure if it’s still like that. But, one of the things that struck me on that tour was that the outward appearance of buildings did not matter to the Italians.
We would often arrive at a hotel and wonder just where in the world we had been booked. Indeed, this was a budget tour, but surely not that budget! The place often looked like it was about to fall apart.
But, again, don’t judge the book by its cover. Inside, would be the comfort and splendour that makes Italy so special. Rome – the Eternal City – was my favourite and they struggled to get me out of the place. It’s a city that brings history alive, and puts the BC right into the AD! Maybe, one day, I will get there again.
It was a train tour of note. And, today, as Grey College (Bloemfontein) arrives to take on Grey High (PE) on the fields of Mill Park (not the Fields of Flanders, although I guess there will be many a hard-fought battle today!), I think of that other train trip of note.
That was the trip in July 2007, just after I had been diagnosed with CBD. I arranged a train for 250 Grey parents to take us from Port Elizabeth to Bloemfontein for the annual encounter.
We were scheduled to leave PE station at three on the Friday afternoon, and the excited parents arrived at two. But our train was delayed due to a level crossing accident earlier that day in Addo.
The liquid refreshments to service the needs of the thirsty passengers for the weekend were quickly consumed on the platform, and additional supplies were later purchased from the off-sales across Strand Street. When the train eventually left four hours late at 19h00, some of the passengers were actually flying!
And the late departure led to all other kinds of complications – with catering and with bedding, with heating and breakfast arrangements, with buses and arrival times. And, to add insult to injury that night, one of the heaviest snowfalls of the year hit the Karoo and slowed the train down even further. And made the evening even colder!
We arrived in Bloemfontein some 5 hours late, relying on internal heating only! Many parents did not even see their sons play on that day. Because of work commitments, Tim Brukman was not scheduled to go on the train, but because of the late departure, managed to join us at the last moment.
Uncertain about the plans for the day, he enquired what the arrangements were. Sue, his wife, replied that, after the arrival of the train, we would go for showers and then have breakfast. With no disrespect to my Jewish friends and readers, in his unique dry manner, and without a smile on his face, Tim replied, “That’s what they told the Jews!”
The stories of that trip abound. And the enjoyment of that trip, despite all the setbacks and despite my condition deteriorating, led me to organising another train trip two years later – last year in 2009. This time the parents shared a train with the Grey boys and luckily only arrived 30 minutes late!
Will there be another trip back to Bloemfontein in 2011? Time will tell.
Trains have a very special thing about them. And are often so similar to the journey that we make in Life. When Jill Bromiley retired from Grey Junior after 40 years last year, I spoke about trains at her farewell function:
Life is like a train ride. We get on. We ride. We get off. We get back on and ride some more. There are accidents and there are delays. At certain stops there are surprises. Some of these will translate into great moments of joy; some will result in profound sorrow.
When we are born and we first board the train, we meet people whom we think will be with us for the entire journey. These people are our parents.
Sadly, this is far from the truth. Our parents are with us for as long as we absolutely need them.
They, too, have journeys they must complete. We live on with the memories of their love, affection, friendship, guidance and their ever presence.
There are others who board the train and who eventually become very important to us. These people are our brothers, sisters, friends, acquaintances, whom we learn to love and cherish.
Some people consider their journey like a jaunty tour. They will just go merrily along.
Others will encounter many upsets, tears and losses on their journey.
Others still, will linger on to offer a helping hand to anyone in need.
Some people on the train will leave an everlasting impression when they get off.
Some will get on and get off the train so quickly, they will scarcely leave a sign that they ever travelled along with you or ever crossed your path.
We will sometimes be upset that some passengers whom we love, will choose to sit in another compartment, and leave us to travel on our own.
Then again, there’s nothing that says you can’t seek them out anyway.
Nevertheless, once sought out and found, we me not even be able to sit next to them because that seat will already be taken.
That’s okay…everyone’s journey will be filled with hopes, dreams, challenges, setbacks and goodbyes.
We must strive to make the best of it…no matter what.
We must constantly strive to understand our travel companions and look for the best in everyone.
Remember that at any moment during our journey, any one of our travel companions can have a weak moment and be in need of our help.
We, too, may vacillate or hesitate, even trip…hopefully we can count on someone being there to be supportive and understanding.
The bigger mystery of our journey is that we don’t know when our last stop will come.
Neither do we know when our travel companions will make their last stop…not even those sitting in the seat next to us.
Personally, I know I’ll be sad to make my final stop…I’m sure of it!
My separation from all those friends and acquaintances I made during the train ride will be painful. Leaving all those I’m close to will be a sad thing. But then again, I’m certain that one day I’ll get to the Main Station only to meet up with everyone else. They’ll all be carrying their baggage…most of which they didn’t have when they first got on this train.
I’ll be glad to see them again.
I’ll be glad to have contributed to their baggage…and to have enriched their lives, just as much as they will have contributed to my baggage and enriched my life.
We’re all on this train ride together.
Above all, we should all try to strive to make the ride as pleasant and memorable as we can, right up until we each make the final stop and leave the train for the last time.
For all of you, NOW you are part of my train, so I am wishing you BON VOYAGE – have a great journey!
Life’s Journey – it was spoken about at our farewell lunch for John Clarke at Old Grey Club yesterday and again at his funeral in Alexandria this morning.
Thank you for being a part of my Life’s Journey.
PS … and Grey PE won the hockey 1 – 0 and lost the rugby 8 – 36 …