On Parkinson’s: Falling down the rabbit hole

Me and my Dad

My dad asked me to look into Deep Brain Stimulation surgery for him.  He finds the computer screen hard going these days. It’s like the keyboard and mouse are out to get him, either that or they’ve shrunk like the furniture in Alice in Wonderland. I guess Parkinson’s is a bit like falling down the rabbit hole, where you can’t trust either your eyes or your body, to tell you the truth of your surroundings. 

When he sits in his chair, he slouches heavily to the right. Mum is always saying ‘sit up straight’, like he’s doing it on purpose, but she’s only sharp tongued because he wouldn’t register it otherwise.  He straightens himself, and then I watch him slide slowly to the right once more. If you don’t keep him talking, or sometimes even if you do, his eyes close and he drifts to sleep.  Sometimes he dribbles, but that is only on his ‘off’ days, which thankfully are less frequent than his ‘on’ ones, which brings me back to Deep Brain Stimulation surgery, or DBS for short.

They want my opinion on whether ‘now’ is the right time. My initial reaction is ‘yes’ because I want to see my dad like I do in my head; tall and strong, with a huge booming voice and even bigger laugh. Parkinson’s steal voices, leaving behind a whispering echo. I hate having to ask him to speak up. He is speaking up.

I temper my enthusiasm and tell them I will do some research on google scholar.

My visit ends with Dad going into the garden. He keeps himself busy out there, but this summer Mum took over weeding the vegetable patch because she couldn’t bear to see him struggle. Not that she told him that was the reason. She tells me these things instead. How he’s stopped laying the breakfast table and spends half the night in an upright chair, as he legs do a jig to a tune only they can hear.

Could this operation bring my dad back?

Parkinson’s is a disease that destroys the brain cells that produce dopamine. Dopamine is a neurotransmitter. These tiny chemicals cross the gap between the neurons in our brains. Dopamine is responsible for voluntary movement (so thankfully breathing and heart rate are not affected). Reflexes are unaffected too. Throw a ball at Dad and he will catch it – his body reacting instinctively – but ask him to walk through a door and he will dither backwards and forwards for minutes at a time.

One of the funniest scenes I have ever witnessed was in a narrow hotel corridor in Cornwall. A white haired gentleman, much older than Dad was approaching from the other direction. He too had Parkinson’s, his face expressionless, like he was wearing a mask of his face, covering his real face. Reaching each other, they began a Parkinsonian jig, shuffling backwards and forwards, staggering left and right as if dancing to the Devil’s fiddle  – Devil went down to Georgia. After I had wiped the tears from eyes, my belly aching, I guided Dad past. If I hadn’t been there, they would still be dancing now.

I go back next Sunday for coffee, as I usually do. Dad is looking really good. He is standing relatively upright and only falls asleep once in his chair. Mum sounds and looks upbeat too. She has on a bonkers t-shirt over animal print leggings. Will she ever dress her age? I hope not. We discuss his 65th birthday the following Friday. We are going out for a meal to celebrate. We won’t know until the evening whether dad will be ‘on’ or ‘off’. If he is ‘off’ the evening will be short and Mum will be bristling with disappointment and worry.

I tell them I have done some research on DBS.

Mum’s face takes on that pinched expression she gets when she is feeling threatened.

I tell them the research shows that the global outcomes for those who have DBS compared to those who haven’t, is significantly better. I explain that significant means the findings are not due to chance, but as a direct result of the surgery. I tell them that those who have had it done, and posted their experiences online, don’t regret it and would do it again in a heartbeat.

I tell them that there has been some evidence of cognitive impairments like short term memory loss, though overall these impairments appear to be temporary, and serious events, like psychosis are statistically insignificant (in other words they are the same incidence as in those who don’t have DBS). I tell them the biggest risk is a stroke during surgery. 

I tell them it requires two operations; one to insert the probes deep into the brain and a second to attach the electrodes to a voltage box under the skin of the chest. Dad will have to go through a series of assessments first. He will have to come off all his medication for a time so they can see what the most troubling symptoms are. He may not be suitable, but age is on his side.

He hasn’t fallen asleep and his eyes are solid blue, like they’ve always been. I have more ‘on’ days than ‘off’ he says, and the thought of it terrifies me.

‘Sit up straight, Stuart,’ Mum snaps.

He does, immediately tilting to the right again.

‘Well there’s your answer then,’ I say. It is not a miracle cure, nor an easy route, but it is an option if things become too unbearable. We all agree that until he has more ‘off’ days than ‘on’, he should wait.

Mum is pleased he is not considering it, yet. Even though she is angry that Parkinson’s has stolen their retirement and tells me how resentful she gets at times. She is thankful for the good days.

And I realise, under the mask, through the looking glass and down the rabbit hole, my dad is still here. Still strong, still thinking booming thoughts, and still laughing. And when Mum snaps,’ sit up straight, Stuart’, he is still tall, if only for a little while.

As always, your thoughts, comments and experiences are welcome.

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Three for writers: Orwell’s rules

I came across this essay of George Orwell’s the other day: ‘Politics and the English Language’. Despite being published in 1946 much of what it says about writing with clarity is as pertinent today as it was then (possibly even more so with the proliferation of jargon, typified by the PR guru in the fantastic satire, ‘In the thick it’). Although the advice is general and aimed at professional writers rather than writers of fiction, I do think ‘us’ fiction writers – particularly those who write commercial fiction – can learn something useful from Orwell.

In contemporary commercial fiction, the writing should be invisible, but not ordinary. It should, as Orwell states: ‘express and not conceal or prevent thought’.

He provides a list (who doesn’t like a list) of writing rules, which he believes, if followed, will halt, not only the decay of the written word, but of thought, and with it an end to political chaos. A grand idea, but one that makes a lot of sense. We are defined by our actions, but those actions come from thoughts, articulated by language. If the language is vague, then thought is undeveloped, or muddled, and action lacks purpose and conviction.

Orwell’s writing rules

i)                   Never use a metaphor, simile, or other figure of speech which you are used to seeing in print.

If it comes easy it is probably a cliché. The other day I wrote; ‘the college was like a ghost town in August’ – it tells the reader nothing about the person who is thinking it.

I changed it to; ‘The College in August was like a nightclub in the daytime, pointless and stale.’ This expresses so much more about the character’s cultural references and state of mind.

(ii) Never use a long word where a short one will do.

Even more important if you are writing in first person, never use a word the character wouldn’t use.  My character ‘expresses her condolences’ – no she doesn’t! She sends a text saying she has a spare shoulder to cry on.

(iii) If it is possible to cut a word out, always cut it out.

This is so important in commercial fiction, where pace is very important.

At first glance, the elegant décor suggested opulence and wealth, but as I scanned the walls and ceiling, I saw the blown plaster behind the large vase of lilies and the chunks of missing cornice and creeping mould. 38 words.

The décor suggested opulence, but a closer inspection revealed blown plaster, hidden by a vase of lilies, and creeping mould. A chunk of cornice was missing in the corner. 29 words.

(iv) Never use the passive where you can use the active.

Do you know your passive from your active? In fiction it is rare you will need to use a passive voice.

In the active voice, the subject and verb relationship is straightforward: the subject is a be-er or a do-er and the verb moves the sentence along. In the passive voice, the subject of the sentence is neither a do-er or a be-er, but is acted upon by some other agent or by something unnamed.

For example:

(passive) From out of my bag, the kindle, along with notepad and pen were extracted.  

(active) I pulled my kindle, notepad and pen out of my bag.

Test yourself. Can you turn these passive sentences into active?

(v) Never use a foreign phrase, a scientific word, or a jargon word if you can think of an everyday English equivalent.

Unless, if by doing so, you express something about the character, such as, ethnicity, intelligence or job status, but definitely don’t use big words just to be clever or elitist.

(vi) Break any of these rules sooner than say anything outright barbarous.

I love this one. Sometimes a cliché, used by a character, is illuminating. Sometimes the passive voice is used to create a particular effect, for example a character intentionally distancing themselves from their own actions. Sometimes you need a long sentences chocked full of adverbs; I love you, truly, madly, deeply and completely – because of the sound and rhythm they make.  Sometimes the rules turn something beautiful into something ugly.

To boldly go (split infinitive) is so much more enduring than; To go boldly.

Orwell’s original essay was a rant at lazy, imprecise language, leading to lazy and imprecise thinking, which in turn leads to lazy and imprecise language.

“It becomes ugly and inaccurate because our thoughts are foolish, but the slovenliness of our language makes it easier for us to have foolish thoughts.”

He directs his attention on political language, after pointing out that if you speak plainly and simply, when you say something stupid, its stupidity will be obvious, whereas if you use lazy clichés or abstract terms, then you can ‘make lies sound truthful and murder respectable … and to give an appearance of solidity to pure wind.’

So though Orwell’s advice is not directed at commercial fiction writers, it is useful for commercial fiction writers to ask themselves:

1. What am I trying to say? 2. What words will express it? 3. What image or idiom will make it clearer? 4. Is this image fresh enough to have an effect? And he will probably ask himself two more: 1. Could I put it more shortly? 2. Have I said anything that is avoidably ugly?

Orwell ends his essay with a word of caution, possibly even a premonition, depending on your perspective of the merit (literary or otherwise) of recent best sellers.

“But you are not obliged to go to all this trouble. You can shirk it by simply throwing your mind open and letting the ready-made phrases come crowding in.

Share your writing gems. What has helped you to develop as a writer?