Month: June 2020

Winter 2017

Neurology, dopamine, levodopa, rigidity, tremor, young onset, insomnia… words that now swim around my mind and are solidifying into my subconscious.

My 35 year old husband has an incurable, degenerative, neurological disease. We have been assured that among the neurological family of diseases, this is the best one to have. A morbid and strange utterance to hear.

The first of many future scripts is filled, detailing a new medication that will hopefully alleviate the symptoms that have now found a home in my husband’s body. New medication that will become so familiar to us, so recognisable, yet so despised.

We are hopeful that this medication takes effect – confirming the diagnosis, as we dare not open other doors that may hold far more sinister realities. The words Motor Neurone are heard and our expressions are fixed with a mixture of horror and disbelief. I will my silent tears to stop from falling and quietly pray that this new medicine is effective, avoiding grim alternatives.

I force thoughts and visions of our future out of my mind. I continually bring myself back to the present, trying to focus on the here and now and what lies ahead of us – sharing this news with our family.

We tell our precious girls, who at the time, were 8 and 5. They comprehended what they were able to grasp, most likely not understanding the gravity of this new life path, that they are now unwittingly heading down. What does this mean for them? How will their lives change? How much will their Daddy change?

We share the news with our parents and siblings, my stomach in knots, relaying the information over and over. Shocked, saddened, pensive faces match ours. Kind words spoken, warm hugs given.

The medication takes effect. This is it. Outside, the change of seasons has commenced. Trees abandoning their leaves for another year, glistening frost covers the ground just before we are gifted with another sunrise, heralding the start of Winter.

A new season. Denial.

Becoming Bionic

A magical, slightly gross process is whirring away deep within the microscopic cosmos of my brain. Over the past past twelve months, tiny strands of protein have thankfully been wrapping themselves around the alien, metallic intruders that expertly navigated their way on a mission to blast electricity into the sub thalamic nucleus just millimetres from the brain stem.

It’s a remarkable world in there. So very complex.

Sleepy neurons have been dependent on being hand fed their levodopa meals – through copious amounts of pills – to produce an unusually limited supply of dopamine that was quickly consumed transmitting messages throughout the rest of the body. These same neurons have been put on a harsh diet. A new rationing regime has been introduced – less than one quarter of what they have been accustomed to receiving. The rest of their oversized portion has been replaced with essentially two enormous cow-prods – jumpstarting them into more efficient production. 

I imagine a world of chaos on this microscopic scale. An intimidating invasion preceeded by the most cataclysmic thunderous sounds and violent earthquakes as the drill-bits gave way to blinding light streaming into the dark landscape. One that was only previously lit by the gentle and peaceful crackle of electrical current as cells and neurons communicated in this once tranquil space. In this setting it is not hard to imagine why some of these worlds might rise up and fight, rejecting this new arrival with infection, pain and discomfort.

After 12 months, graciously, my little world has now completed its choice to extend a peaceful olive branch to the invaders. They are now part of the team, completely accepted and providing a valued contribution to a truly bionic world.

We probably have a lot to learn from these tiny dynamics!

Of course, all of this sounds a touch romantic (and I’m sure nutty!) but such radical treatment – not cure – for Parkinson’s disease was only ever a glimmer of hope for the future. Never able to promise anything. It required a leap of faith from an unknown cliff and into a thick mist. It was always going to hurt. But hope is a powerful motivator, a glimmer is more than enough. It allows us to wish, to dream the impossible dream, and sometimes it even drags us over the line to achieve it.

This hope, these dreams are shared – by my family, and in my truly blessed circumstance, with friends and connections beyond anything I deserve.

In many ways my dreams are now real. Our prayers answered in the affirmative. Some ridiculously out of this world technology gives me a new body and with it a new future. It has to be a new future. My new body is a different body, my new bionic, battery powered brain is different, and they bring new quirks to learn, new behaviours to become accustomed to. 

For me this means the closure of the longest chapter of my life, Principalship. A chapter that has been so life-giving and life changing, so insightful and so very memorable.

My core values won’t change, although they have been refined and put to the test, strengthened in the furnace. I have been privileged to dedicate my working life to service of others. A life that gives back more than it can take – and it can take a helluva lot! This sense of service may shift focus, and I await anxiously but positively for the grace that will direct this shift. It is a proactive wait and I am so very looking forward to strengthening connections with so many of you, re-connecting with others and of course starting new ones. Again, I am so blessed to begin this new chapter close to home. How incredibly valuable is time? and time I have – to spend with my beautiful girls, and my family.