An extract from Slender Threads, on March 15th, 2008:
The status of my patienthood was soon to become clear. But not before I had waited for another hour or two. So I waited.
It’s odd how waiting rooms are so monumentally unfit for purpose. Either that or those occupying them are monumentally unfit for the task at hand. It’s easier to wait in the machine, to be honest. More relaxing, too. I suppose this is because there’s consistency enough for the brain to switch off, and too much stimulation to get bored. After what seemed like some time, yet another consultant trooped in and led me away. This time, it was for ‘the talk’. This was the part of the day that would define my future. From this moment on … well, some upcoming moment, anyway. Continue reading
‘So, where do you see yourself in ten years’ time?’ If I’d been asked that question in 2006, I would have seen a me very different to the one that sits, laptop atop lap, slowly tap-tapping out the words you are reading. I had recently handed in the draft of my PhD thesis to my supervisors, and awaited their approval. It was a long time coming as they were both ill – sadly they are both now deceased – and this delay meant I ended up submitting late, thus missing the cut on several jobs. Unexpected event no. 1. Two years later, I drove home clutching a bag of pills and a brand new diagnosis. Unexpected event no. 2. I wrote an article for the Independent – sadly now deceased – called ‘The Longest Wait‘. Here’s an extract:
My New Year was somewhat blighted by the revelation that I had acquired Parkinson’s disease. That’s how I put it. Acquired. Like experience. It just creeps up on you.
But here’s the rub: I don’t look ill; I don’t act ill; I don’t even feel ill, yet I am. And this is what’s strange. My life hasn’t been ruined by this disease – I’m not about to die – but it certainly has changed. The problem is that I don’t know what’s going to happen: all I know is that something will.
Moving swiftly on to 2013, I published a book called Slender Threads: a young person’s guide to Parkinson’s disease. In this I considered the fact that I did now know pretty much what was going to happen to me, and why. I merely lacked a ‘when’ and a ‘what it feels like’. Parkinson’s was, for me, a disease of anticipation. That was its ‘exquisite torture’, the inevitability it brought to the table. Of course, coming to terms with the inevitability of our decline is at the heart of the human condition. We all have our ‘Mistah Kurtz’ moment. A diagnosis like Parkinson’s casts this inevitability in a different light, however. It makes it visceral. It makes it come eversomuch closer. It makes it real. Continue reading
The lights started to come back on. At first they were incandescent bursts which ripped through her unconsciousness before fading back into darkness. Then, slowly, the bursts became less violent, longer-lived, until she began to see.
The pain at the back of her neck was sharp, visceral and raw, and yet this pain seemed to lie on top of a dull, heady ache. She rubbed at it with the palm of her hand and winced as the pain increased, intensified, sharpened.
She pulled herself up onto her knees groggily and looked at her hand. There was blood. A wipe of fresh, glistening blood alongside the crust of the earlier bleed which her hand had disturbed. Her head hit the floor hard as the lights went out once more. Continue reading
[following pt 4]
‘The feed from one of our drones.’ Tamarind restarted the video. The voice was metallic. Dead. But very, very alive.
‘Haha! Got another! That’s seventeen … it’s a personal best! Let’s try … a clusterbomb! … Wheeeeeeeeeeee! Look at that one! He burst! Running man? Stop running … yes, no legs stops you running … selfie! …’ Continue reading
[following pt 3]
‘So. The baby. Richard’s?’ Began Terri. She ploughed through Tamarind’s protest. ‘It isn’t the first, and won’t be the last …’
‘I’m here to speak with Richard, not discuss my private life.’ And let him go, he’s just not interested, she almost added.
Terri stood up as the door opened and Richard walked in. ‘You girls best friends yet?’ Terri left the room. Richard stared at the door as it shut heavily behind her, its automatic closing device thwarting her attempt at a dramatic slam. ‘Who got her goat?’
‘You did. Some time ago, I shouldn’t wonder.’
‘Ok. Tamar. It is Tamar, right? I may be arrogant, overbearing and think all this Gaia stuff is a load of old … but I’m not stupid. You’re no hippychick. And that’s no baby. What gives?’ He sat and poured himself a large glass of red wine. Continue reading
[following Pt 2]
‘Dr. Woods’, Terri interjected, just a little piqued at how she had suddenly lost his attention.
‘No. Richard is my name. And you are …?’
‘Starchild, meet Dr Richard Woods’.
The expected words didn’t materialise. Richard breathed a sigh of relief. He leant down, putting his face to the child’s. It was strangely still.
‘Hello Starchild. I’ll bet your daddy’s proud of you!’ Tamarind shot him a look.
Richard froze, but the cloud passed.
‘I know how this is going to sound’, she began … Continue reading
[following on from Pt 1]
‘… and so the natural state of being, of a being, is being in love. To be sentient is to love. Cogito, ergo amore. Thank you.’
The audience broke out into warm applause peppered with shouts of ‘yeah!’, as the twenty-minute period for questions finally ended an hour behind schedule. As he was led off the dais, the speaker was engrossed in animated conversation with the event’s organiser, his words illustrated with small but intense gestures.
‘… but I’m preaching to the converted here, Terri. It’s all well and good but there’s very little this lot can do.’
Terri bridled slightly as he took her by the arm. ‘But we’re doing workshops, holding consciousness awareness days, then there’s the … ‘ She was waved silent. Continue reading
Many have commented on the crass, arrogant and patronising attitude of the HuffPo’s UK editor to those who provide much of his content (and thus pay his wages):
“…I’m proud to say that what we do is that we have 13,000 contributors in the UK, bloggers…we don’t pay them, but you know if I was paying someone to write something because I wanted it to get advertising pay, that’s not a real authentic way of presenting copy. So when somebody writes something for us, we know it’s real. We know they want to write it. It’s not been forced or paid for. I think that’s something to be proud of.”
The sound from the live feed stunned the room into silence, reducing its temperature by a good three degrees. Dave Baker, operative third class, was overwhelmed by a visceral surge of impotence. Even his colleagues comprehended that what they had just witnessed was beyond special, beyond even unique; it was the future. And it didn’t seem to like them that much.
‘What the actual fuck?
The words dripped from Dave’s open mouth.
‘You have got to be kidding me.’ He sat heavily into his seat, utterly defeated.
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