Pin Pricks & Angels

As a small child, I was prone to nightmares. Quite often awakening sobbing and shaken and yet so relieved to have escaped. Only to find, that in fact, I was not awake and the nightmare I had just escaped was really the beginning of some new horror! A dream within a dream. 

When I got a little older, some part of my subconscious mind allowed my conscious mind to enter the dream and I would wake myself up by pinching and digging my fingers into my breast  – almost impossible for a boy with the thorax of a malnourished greyhound.

Long before encountering the terrors of Dracula and The Big, Bad Wolf, there was Pin Pricks. It sounds so ridiculous, but it’s true – PIN PRICKS! 

In terms of horror, for me, “Pin Pricks” was my equivalent to “The Conjuring”. It revolved around a rubber inner-tube. I don’t remember what size tube it was – car or bike tyre. It was more the fact that I’d been cast into the role of the soft rubber tube and many a night I’d have to endure being some-how rolled (there was no wheel supporting the tube) across the hard ground, scattered with pins. I could feel every pin, as it punctured the rubber, like it was penetrating my skin. So odd and bizarrely prophetic, considering that this is the earliest example of a dream that I can remember. I was maybe four years old, if that.

It is not pin pricks these days. A more apt descriptor might be the sensation derived from the discharging of static electricity. 

It’s something I know I cannot and probably shall not ever pinpoint. My decline into this living hell. This incessant, all pervading madness.

An example of a common description for Parkinson’s Disease, used by therapists in correspondence, goes something like this:

“Parkinson’s Disease is a lifelong, progressive neurological condition which impacts muscle control and which over time can lead to tremors, changes in gait and control, general stiffness and loss of balance.”

In one report, there is the mention of severe anxiety and depression. It seems rather odd to me that most people avoid discussing this side of the disease. Even the neurologists I have engaged with do not seem to discuss this side of the condition. Especially the neurologists. Certainly not openly and definitely not with much empathy.

It seems that while the neurologists I’ve engaged with, may have Intelligence Quotients, charting in a similar direction to their bank balance and investment portfolios, they possess little Emotional Intelligence, which has been hard to deal with at times. 

Having recently endured an hostile environment at my last appointment, where I was rebuked by my “living god” for raising the need to control my anxiety, amongst other things, I’ve decided to check out my options. 

Reactionary? Perhaps.

But the fact is this complicated, multifaceted disease (or group of diseases) has severely eroded my tolerance levels. Another wonderful symptom to add to an increasing list of not just physical and mental, but emotional dysfunctions. No doubt, there will be some people who will say that I’ve always been a grumpy prick and there are numerous examples, which I’ll not go into here. 

Maybe I’m just a sensitive fellow. Another person’s behaviour towards me is just that. It’s theirs to own, not mine. I’ve  been around long enough to know.

It would be suffice to say that my goal is to become a better person, living and learning. I hope that I’ll do this right up to the day that I die. 

However, it would be foolish of me and dishonest, to paper over the cracks. Those “darker” emotions are a part of life presenting me with opportunities to learn and grow.

When I began writing my blogs, I said that Parkinson’s wouldn’t define me. However, it’s not easily dismissed, as many people living with this condition will attest, it impacts your whole life, waking and sleeping.

I could easily have died, 53 and a half years ago. A couple of weeks after being born, I developed pyloric stenosis, and subsequently was admitted to hospital, dehydrated and looking pretty much like a skun rabbit. 

Way back in 1966, there was a pretty good young doctor stationed in my home town, well trained nursing staff, a well equipped hospital, which the locals were quite proud of, and rightly so. My illness resulted in a short stay in hospital, no surgery was necessary and I went on to devour more than my fair share of whatever mum served up, to become a jolly, dimensionally well-rounded infant. 

The chances that a baby is conceived, survives birth and lives to be my age are quite incredible and I have to admit that for the overwhelming majority of the time I’ve spent on this wonderful little rock, I’ve taken so much for granted.

There’s a gulf of difference between just surviving and living your life. They’re not necessarily mutually exclusive situations and I’m definitely one of the lucky ones.

I’ve somehow fluked it, living through incidents which could easily have seen my existence terminated. 

Yes, Rapunzel and the rotten balustrade, ad infinitum! Vehicle roll-overs and so on.

There have been many good times. So many. Through them all, I have to say, my greatest good fortune has been the people around me. 

I have previously acknowledged these blessings.

Now I acknowledge the sadness I see. I cannot help feeling responsible for what I see in the eyes of the people who mean so much to me; worry. Just like the Paul Kelly song, I’ve been careless.

In part, it is because of this carelessness with the love of others, I’ve hurt people.

In part, it is because of this condition.

I can’t say that it would be easy to talk to someone who has an inexpressive, dead pan face and an inexpressive, monotone voice. Let alone someone who is often frustrated, by his own shrinking capacity to efficiently perform tasks which previously were performed on auto-pilot.

This frustration leaking out, in toxic and often angry behaviour, not directed at anyone, other than myself. A stream of expletives and mutterings and the storm brewing in my face is not an attractive look. Not only impacting my cognitive and executive functioning, exacerbating  symptoms in an uncontrollable spiral, but it is particularly wearing on those closest to me. It has to be.

Case in point: my implosion, posted on Facebook back a couple of weeks ago. I definitely let myself down there. However, that said, I’ve also forgiven myself. 

Have I had too much time on my hands? Probably yes. 

Ostensibly, I can allow myself to cut myself some slack, but me and myself, tells us that we must do better.

The majority of us (human beings – not the “us” alluded to above) are wired to connect on a neurological level. Most of us also have the ability to influence how we make those connections. 

This may sound like a lot of warm fuzzy bs to some, but if you’re interested, feel free to check the TEDX talk by Fiona Kerr in our videos link. Don’t be put off by her talking about leaders, because I believe that anyone who’s stood up in tough times is a leader.

So, having once again blathered on, seemingly pointlessly, I’d like to dedicate this mind-numbing edition to those I’ve hurt, to all the mental people who’ve given their love and support to me, whether they felt obligated in some way, or not. Thank you. You know who you are.

I’d especially like to thank the carers & loved ones of PwP’s* and the PwP’s who’ve connected with Marz & I. It means so much to know there are others out there going through the same sort of stuff.

Cheers, love you long time.

*PwP’s – People with Parkinson’s