I was talking today to someone about how things have changed in the world since we were younger. We had ‘landlines’ as they are called now, but to us they were just the phone. They were also attached to the house by a cord. Later cordless phones came out and those of us who were teenagers could finally take the phone into their room, if they were quick about it! No more sitting on the seat of the telephone table in the hall and whispering sweet nothings to our paramour, all the while keeping an eye – and ear – out for siblings or parents who might be listening.
There was also a thing called a ‘party line’ I’m not sure how it worked, but I think there was a switchboard that directed telephone traffic and you shared a line. I think the operator could cut in and tell someone to get off the phone because another person needed to use it. Imagine getting a teenager to do that these days! I was perhaps a young child when they existed and only know a bit about them from having heard older adults talking about them.
We also talked about letters. Getting letters in the post was always exciting. Sometimes there might be a few dollars from a relative for a birthday or something or maybe a card. Some people had ‘penpals’ that they wrote to and who wrote back to them. Some may have penpals that they never met, who lived far away, but it was exciting to hear from someone from another country and hear about how they lived their lives. The other thing – I had quite forgotten until someone reminded me of it – was a special fold out letter/envelope combined which was really light weight and felt a bit like tissue paper. These were special things to write to someone overseas and they were sent airmail. It was exciting to see one of these blue beauties in your letterbox, because you knew it carried news and chat from far away.
Then there were postcards. A double edged sword, if you couldn’t afford to travel yourself! On the one hand it was exciting to get a postcard, to see what adventures friends or families had been on. One the other hand, if you had neither the means nor the opportunity to travel yourself, there might be a smidge of jealousy!
These days there are not many of these things around. Travel was not as widely accessed as it is these days and phone calls from England – where my Dad’s family were living – were always accepted with trepidation, as the cost of making a call was quite high. Occasionally, it would be good news of a new baby, an engagement or a wedding, but mostly it would be sad news of someone’s passing. Because of the cost of an overseas phone call, I am pretty sure that my parents would not have necessarily told family in England about Dad’s Parkinson’s. Perhaps they might write a letter, but my Mum and Dad were practical people and I can almost hear what Mum would say. Something like, “There is no point worrying them and there’s nothing they can do, so why upset them for nothing?” Because communication was so sparse to the other side of the world, little of note was discussed unless a major event. Eventually it might come out in conversation, but I’m sure not until things became noticeable.
Now that communication is literally at our fingertips and we can talk to people wherever they are in the world a lot has changed. Video chats and Messenger provide an instant link with those we care about wherever they may be. The cost is not high and so opportunities abound to keep in touch on a regular basis and not just in the case of calls about sad news within the family. Connecting with family even on a daily basis is within the grasp of anyone with a smartphone. Who knew that phones would be considered ‘smart’!
Having had parents with Parkinson’s I notice differences in the way that Parkinson’s was part of our family. That may sound strange to say that Parkinson’s was ‘a part of our family’ but in essence it very much was. Parkinson’s is something, while I take care not to let swamp our lives and be all that we are about, it is a part of our lives that we cannot ignore or deny it’s existence. Even though I try to live in the moment as much as possible, a lot of plans in life can be infected and affected by it’s presence. Unlike my parents, I chose to tell my family about my diagnosis as early as possible. For them to be able to support me and to understand what my personal journey with Parkinson’s is like. I don’t want to be in a position – like my parents in the past – of a phone call from me being received with trepidation lest it be bad news. I want it to be openly discussed when needed, but not what my life is all about. Sure things will get more challenging along the way, but just like anything in our lives that are affected gradually I hope that Parkinson’s is just part of our lives and not all our lives are about. Just like my arthritis which has slowly affected various parts of my body, Parkinson’s could be looked on the same. Every new symptom, ‘just another Parkies thing!’ Not over dramatised and given importance I do not wish it to have. Acknowledging change but also acknowledging and celebrating the things that I am still able to do, not abilities that I have lost.
My hope is that one day in the not too distant future – and hopefully in my lifetime – that my descendants, perhaps my great grandchildren will say “What was Parkinson’s?” because a cure has been found. Just like the landline is something they could not fathom, my wish would be that the very idea of a condition like Parkinson’s seems impossible. A condition that was so serious and has changed and altered the course of many family members lives would be something they would never see nor need to understand. That like the ‘landline’ or ‘postcards’ or ‘letters’ they are relegated to live only in the past and in stories told, like ‘once upon a time…’ and that the happy ending that the story holds is ‘…and never more was anyone to have Parkinson’s ever again…’
Wouldn’t that be a lovely tale to tell…
My journey with Parkinsons 