Something worth writing

by | Aug 8, 2017 | Brain Tumour | 0 comments

"Either write something worth reading, or do something worth writing." -Benjamin Franklin.

My first voluntary movement, 18 days after surgery.

Following the 15 hour surgery on my brain 12 months ago, the whole left side of my body was left paralysed. There is still some way to go. My left hand still experiences constant pins & needles. It has about half of its required strength and dexterity. The neuro pathways, the synapse, from the brain to the hand still has obstacles.

I favour the right side of my body in everything that I do, the left side continues to struggle, reaching for the car door with my left hand, if I’m a passenger, is excruciatingly difficult. I almost fall out of the vehicle, the extent of the effort is hidden from the driver, as I enter the world of total body spasm.

I strain, all tensile extremis and stiff immobility in one. It’s aided by the very real fact that I am now seated, at last stable, for the time being not required to move, not encumbered by fighting the possibility that I could fall over at any time, as the odd slip is a regular event. I’ve recently come across the best way to describe this feeling. Imagine for a moment someone grabbing your hands and twirling you around half a dozen times before letting you go. You struggle to stand, you manage it but you have the distinct feeling the ground is swirling beneath you. It persists for about twenty seconds, and by standing your ground you regain your equilibrium before laughing at the importunity of the perpetrator. I feel this way all the time, it’s not as extreme as that six revolution whirly gig but it’s always there.

I can’t carry a cup of coffee, a plate of food, or a glass of something with a delicate aftertaste in my left hand. I can however, carry a tune, which neatly introduces my latest project. I have purchased a piano, or more precisely, a digital piano keyboard, which uncannily sounds and feels like a more than decent piano. It’s been purchased because I’m sick of left hand inertia, tired of the tired, stiff, weak, immobile, pins and needles left hand. I’m tired of adopting the demeanour ill befitting someone of a certain level of physical and artistic achievement. So I decided to buy a piano so that I could embarrass myself by going back to my childhood by learning left hand scales. Starting with the C Major key signature and working my way through the Major scale range, moving optimistically and seamlessly into the Minor key signatures before then taking care of the right hand. The objective, which looks rather far off at the moment, is Beethoven’s 8th Piano Sonata, which is really not too much to ask. For a while after practice, there is a tingling sensation the length of my arm. I take this as a good sign, that my nerves are being activated, that there are messages getting through, that there is two way communication between brain and hand, confirmation that they’d like to get along and that I’m doing something worthwhile.

Learning to juggle, I emphasise at this point, the learning and not the actual juggling, has not quite activated the synapse as I might have hoped, although I’m still keen to one day develop this skill, if not master it. As for other activities, whilst riding my bike provides me an exhilarating feeling of progress, I still have a marked left leg weakness, I can’t run up a set of stairs, it’s more a valiant attempt to appear to bound, like a misfiring piston but still nevertheless functional, for which I am grateful. My wife wants us to go for a long walk, my response being, initially, is to raise my eyebrows and enquire as to exactly what length of walk she might have in mind. Four hours is a stretch, as much as the idea appeals to me, so we settle on an hour. We won’t be heading back to Nepal any time soon, or to New Zealand and the Routeburn Track, which is where all the trouble started, but I’m up for a shorter version.

It’s both frustrating and reassuring that most people who see me assume that I’m totally healed. The reality is somewhere short of that because the brain heals slowly, very slowly, six times more slowly, I am told, than any other human organ. I have learnt that during the fifteen hours that my brain was being operated on, whilst it took care of the tumour, punished too my brain and body. It has me paying the price for my healing, I’m happy to pay it but sometimes it requires an explanation I’d rather not provide.

But I am stronger for it, happier for it, more at peace in it and so it inspires me to make a difference for those who may not have been as fortunate as I have been. I’m part of a team of wonderful people at Brain Tumour Alliance Australia, hatching a plan to raise money, quite a bit of money as it happens, for research into brain cancer, which kills more children in Australia than any other disease, so that the parents of a young child with a brain tumour do not have to be told that there is nothing that can be done. It’s deeply ironic that government spends nothing on brain cancer research and yet manages to find $340Million to spend on an Olympics campaign; $122Million for a plebiscite so that the people can tell the government something they already know; and $51Billion on submarines that no one wants to drive.

And, so it is with this small missive, to paraphrase Benjamin Franklin, whilst hoping that I have written something worth reading, I move on, hopefully, to do something worth writing.

 

 

A valiant attempt to bound up stairs – July 2017

Practicing the C Scale for left hand.