Parky; one year post op.

12 months on, the journey continues

Ok, so, right. It’s coming up to 12 months since I had surgery on my brain, to instal what is effectively a pacemaker for the brain. 

What I would like to do with this article is list twelve things the past 12 months have taught me. These are not in any particular order; they are just as my slow brain can recall them in sentence form.

Number 1:

Sometimes you just have to give yourself permission to be unwell. It’s good to be positive & cheery; but sometimes you just have to acknowledge that today probably won’t be a very good or productive day

Number 2: 

What it means to be productive can change with the onset of the day

Number 3:

Hooray for not having the Parky shakes any more. I am pleased to announce that when they turned the neuro stim on the day after the surgery, the shakes stopped immediately. Gotta love that

Number 4:

Hooray for the Neurology team at the Austin. I am in awe of their dedication, their expertise, their accessibility. I have learned that they are the real deal when it comes to health care

Number 5:

People are innately very generous & kind. They have been to us anyway. In all things big & small, in word & deed. I give thanks for the gift of true friendship that often goes above and beyond. 

Number 6:

65 is a difficult age to be looking for work. I still manifest symptoms of parky; mainly the power of speech. At least once a day my lips go on strike and I am left trying to exist without them. I’m lined up for some interviews shortly & I’m at the mercy of the Parky roulette wheel, i.e. “which symptoms are we going have on show today?” So the lesson for today is, don’t panic; you are not your circumstances. Navigate the course that you find yourself on. To quote a famous film line, “everything will be alright in the end.  If it is not alright, it is not yet the end!”

Number 7:

Thank God for my wife; she is amazing

Number 8:

It hurts when you fall over. Balance is a key issue with Parky. I’ve fallen over a number of times since diagnosis. Breaking a rib was the crowning moment in motor skills or lack there-of. These last 12 months have taught me that taking my time to be sure of my circumstances is a skill worth paying attention to. 

Number 9:

I’ve learned this year that people generally don’t cope well when confronted with unmanageable situations, like a disease that has no cure. My evangelical “friends” don’t cope well with this kind of reality. Surely I’m meant to pray, I get better & we all go to Disney Land together. There was a time when I subscribed to this style of belief. I firmly believe in a God that can heal & I hope that one day I can share with you that these things have in fact occurred. What has transpired though has forced me to examine & apply the theology that we are the hands & feet of Christ; his works happen through us. The easy route through all this is “oh well, I prayed and nothing happened; I have therefore discharged my responsibility.” 

This kind of healing journey requires regular engagement at the most human of levels. Anything short of that could be viewed as tokenistic. Honestly? I have witnessed people with the some of the most difficult of health challenges demonstrate rock solid faith in a God that heals in such a way that it shames me even to think on it. My simple prayer? God I believe, help my unbelief. 

Number 10:

For those that know me, my guitar playing has suffered quite a bit these past months. I can’t seem to get back the subtlety & nuance that once were mine. I have a guitar next to me as I type this. I’m not really fussed by it; more curious at how powerful the brain is when it comes to physical functionality. Watch this space. (Oh & for my sister Helen, repeat after me “I’m gonna move that toe”)

Number 11:

We are still making plans, lots of them. A big lesson from this year. Has been to keep my eyes on the horizon, just like Nic Cesters songs exhorts us. This is so true for Bernie & I. I am close to releasing another album. If I focus on my immediate surroundings & opportunities, not much will happen but if I lift my eyes & widen my gaze, the possibilities multiply exponentially. 

Number 12: 

Tied in with #11- I’ve had to learn & re-learn how to listen and who to listen to; starting with day 1 post-op; I found myself sharing a room with a gentle giant of a man who has the unusual name of Hach (pron “H”) Struggling with his own illness we laughed our way through that first week. But you have to listen. My good mate Dave & my beautiful big brother each conducting their own classes on bravery in the face of mortality; friends like Deb & Haz, or the ever increasing Bennett clan, all of these people whispering ever so softly, deep truths that challenge them. My own children who have concern etched all over their faces but they just get on with things. And then there’s my grand daughter who all she has to do is smile & life is immediately wonderful. 

Last but not least, my wife of nearly 45 years. I need to listen more to what she isn’t saying as she wears this pretty hard somedays. 

What a glorious thing it is to love & care for someone.

It’s like a soothing balm really