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Mark CopeAlthough born in Toronto, Mark was brought up in the south of England before returning to Canada in the mid 80s to embark on a career in the Canadian Armed Forces. After serving as a paratroop officer, Mark moved into the aerospace industry as a project manager, a role which he still enjoys today, albeit in the retail sector. He is an avid rugby fan and volunteers for a variety of organisations including SPCA and HSBC Rugby Sevens. He was diagnosed with Parkinson's eight years ago and is scheduled to undergo Deep Brain Stimulation surgery in early 2017.

 

New Game, New Rules by Mark Cope

Tom was in that glorious moment between waking and sleep. His mind, free from the drudgery of orchestrating his body, wandered aimlessly while poking at unopened thoughts and reawakened, enticing memories. He loved spending time here. As consciousness gradually took control, his brain's electrical impulses put on their overalls and went to work… what a letdown!

There were some free radicals that continued their weekend, singing and dancing throughout the day. Sometimes they went completely out of control… until the enforcers, the meds, broke up the party. In short, Tom had Parkinson's disease.

Today he has a goal. Today he would finish a short story. Tom had spent the better part of his time on earth in denial. He had convinced himself that he enjoyed his chosen career and while there were certainly flashes of satisfaction, he was hurtling towards earth after a gentle push off the career ladder. It had been less of a revelation and more of a slow realization that your peer group had disappeared into upper management.

His mortality had insinuated its way into his life with the diagnosis, 7 years ago.  After a brief but intense "why me" period, he had settled into a comfortable pretence that nothing was wrong… but that was changing. The physical effects of the malady were well recognized and now outwardly visible. The worst change was the growing inability to communicate with everyone. He slurred his words and was barely audible. Writing a legible note became a Herculean task and stringing a coherent sentence together in front of work colleagues became a distant memory.

Tom knew that the relentless march of the disease would eventually force him to make significant changes, but he wasn't ready. He had spent the time since his diagnosis dealing with the present rather than planning for the future.  Now, the ingenuity with which he hid his symptoms was being outpaced by the disease. As he limped across the floor of the office to his desk, colleagues whom he had worked alongside for years would look with startled eyes, but no one ever asked what was wrong. Everyone knew something was wrong, but the suffocating cloak of social niceties that we live under stopped anyone from inquiring. On the other hand, maybe he was being presumptuous and they just didn't care.

People talk about waging a war against a disease, but in truth it's a series of guerrilla skirmishes that are fought against an overwhelming adversary you know you can never beat; but, by using off the wall tactics and fighting with what you have, you can prolong the conflict. After all, life is a terminal disease.

Tom didn't feel like a fight this morning. In fact, he didn't even feel like getting out of bed today. He dutifully gulped down the medications and waited for the magic to happen. His now fully conscious left brain reasoned that there were new opportunities to capitalize on dormant skills and interests. The pessimistic right side wondered why anyone would bother; he was on a road to disability and early death. Today was a left brain victory.

Pulling himself upright, he waited for the medication to kick in and give him his body back. It gave him time to think. He was more comfortable in a world of words, design, painting and history rather than formulae, logic, calculations and technology – his errant career choices. He was out of time; the disease would soon steal everything. That was the signal to start typing.

The words flowed and in a beautiful solitude he imagined himself as a witty, creative purveyor of prose tapping into an innate ability to convey, ideas and feelings in refreshingly novel ways. The cruel reality of peer review, assessment and comparison were not for this moment. As he continued tapping, a realization crept up on him, he was actually enjoying it; he liked what he was doing. It wasn’t because of the collection of words assembling on the screen in front of him, but because he had taken a step on a new road… he was a writer!

As he explored this new way of thinking, he wondered what being a writer really meant. After all, everyone could write, so did being a writer mean you have to enjoy it? Likely. Make money at it? Less likely. Tom was comfortable with the term "hobby writer."  His mind continued the questions: did he have to be a "good" hobby writer? Did he have to win writing competitions? Did he have to earn money? If he was a good hobby writer, did that mean he had shifted jobs and now had to be judged against other writers? He envisioned his life in obscure mountain retreats covered with tie dye and dreadlocks, listening to 20 years olds giving insight into our existence, and advice as only a 20 year old can.  He involuntarily shuddered.  Couldn't he just remain as a good hobby writer and fight the need to be better, stronger and faster? He put his head in hands and gleefully invited his right brain to take over while his left brain faded into the background, still trying to resolve the self-created loop of despair and unanswered questions.

One thing he was sure of: he was in alien territory. He had always been comfortable expressing himself through words, sure, but up until now writing was a tool, not a job. Then he felt a rise in his stomach like a primeval creature awaking; the "what ifs". What if I'm the only one that thinks I write well? Or, worse still, what if he is fed well-meaning lies by his friends hiding behind unsaid truths? The "what if" creature was now fully awake, flexing its body of failure and its ugly head of self-doubt. Tom was starting down the old familiar path that always led to the same place; give up, stick with what you know, listen to people telling you what to do.

The difference today was that the game had changed; there was no option to stick with what he knew. Everything was a new step. New game, new rules. He startled himself as he unconsciously said the words out loud. As he reconnected with his keyboard, he smiled.

"New game, new rules," he repeated. He had a second chance, only this time, he would make the rules. Well, some of them anyway.

Tom re-read the unremarkable prose on the screen in front of him. It had seemed good when he was writing it; even now it seemed passable, if a little flamboyant. Did he really want someone else reading his petty scratchings? Why did he have this urge to be judged? No, damn it. He was writing for himself. His logical brain chided: Well what's the point in that? Writing is communication, and communication needs two parties. If you start talking to yourself, well then you are only a tiny step away from a house full of 40 stray cats.

Finally, he made up his mind: it wasn't the right time for public review. This was his epiphany, his road to Damascus and he didn't want to share. He still wasn't sure whether this came from a false sense of self conviction, or whether it was the thought of someone else casting a judgement on his outpourings. He didn't want to know. This writing was personal. Tom got up and turned off the light. He slowly ambled out the door. Suddenly, he turned back to his computer and punched "send."

It was done.