Knowledge 1

Discovery is an interesting concept.

A tiny piece of knowledge, of information and your life can change beyond recognition.

I woke up this morning and I looked on YouTube and read a video blog of somebody’s diagnosis of Parkinsons.

Incredibly ,they got the diagnosis from standing start to full knowledge in less than 24 hours which is almost unheard-of in these NHS delay ridden times. And the thing that made me stop and think was not the diagnosis itself – it wasn’t even the speed – it was the fact that the guy telling the story was sitting next to his partner and that she had been there for him throughout the process. And five years later whatever she was still there, finishing his sentences for him! Obviously, this struck a chord with me in these straightened times. And it took me back to my diagnosis 10 years ago.

Parkinson’s UK and similar organisations are always saying that sharing the story of your diagnosis is helpful to others, so here’s mine. I think it’s pretty typical but nevertheless it’s interesting to me! There’s quite a lot so I’m splitting it over a few posts…save your tired eyes!

So, I was a healthy 35-year-old trying for a baby and full of career ambition and angst just like most people. Until I noticed one day that I was brushing my teeth with my left hand not my right and I thought “that’s weird” but didn’t do anything about i. Then I noticed that I couldn’t eat using my chopsticks as well as I had been able to. Now anything that gets between me and Chinese food is something serious – needs to be dealt with immediately. So I made an appointment at the doctor feeling very proud of myself, thinking things would be dealt with quickly. I went to go see him And he did all the normal tests and checked my capabilities on both hands and said “I’m not sure what it is, come back in six months if it’s still the same”.

Anyway within those six months I got pregnant and was understandably distracted, so never went back to the doctor and my hands got a little bit worse, but to be honest, the fun and games of pregnancy at the age of 36 by now were more engaging and so I didn’t do anything about it. My eldest son was born in March 2006 and I noticed that my hands were beginning to really hurt. I went to the doctor and I was diagnosed with de quervane’s syndrome and possible carpal tunnel. They did all the tests for carpel tunnel and couldn’t rule it out but couldn’t specifically diagnose it either. So they decided to do the operation on my right hand because it seemed a sensible thing to do. This was after having lots of incredibly painful steroid injections into my wrists and I said “well it’s going to be very inconvenient not be able to drive two weeks, before I have this operation is there anybody else i could see just to make sure that we’re happy that’s what it is “.

And that’s how I got to a senior respected neurologist who took one look at me and said “well I need to do the testing to discount any others conditions but I think you’ve got Parkinsons”.

I was by myself. I had had no warning. No inclination at all. Completely out of the blue. I don’t remember leaving the hospital but I remember walking home from the hospital in a daze. I phoned my husband on the way – I don’t remember what I said – I think I just decided to ignore it and get on with life as best I could. I mean I had a little boy, a tough job and hopes and dreams – it just seemed unbelievable. Therefore it wouldn’t have a place in my life.

And I carried on. I stayed in my job, travelling nationally and oversees, I had another son (and a miscarriage), I taught myself to write using my left hand, I learnt how to rest when no one could see so I appeared ok. I hid PD from everyone really even though I told people. I didn’t hide the words but I fought against their meaning and implications. I think many people do if they are honest. And it worked. For a few years. And then suddenly, it didn’t….

I will post the next instalment soon. What did you do when you were dx?

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Certainty

There is a very well-known saying that there Are only 2 certain things in life: death and taxes. Well, I have been exploring a related third certainty: the need to work in order to provide sustenance. There is a lot of philosophising around the ‘post work’ model of social structuring. Basically, as machines become more intelligent and capable our requirements for human workhorses will reduce to such a level as to render the concept of work redundant in itself. We will not have to work any more. Discuss.

You probably know I am doing an MA in visual communications and my project this season will be all around this idea of the post-work social landscape and how you can think about it visually. I’m thinking about the possibility of a new kind of landscape painting/drawings/whatever… Instead of a geographical or physical Landscape what about the social world? I was in the library all day today looking at this and it really is quite interesting in a geeky kind of way… Looking forward to sending some more stuff in your direction so you can have a think. It’s really interesting when you get into it… And hopefully the artwork that comes out of this will be a bit different. Well, let’s face it, it wouldn’t be me if it wasn’t slightly off the wall would it?!

Ciao!

To Venice…yes, you heard right. I’m in this lovely city for two nights. I booked a cheaply flight ages ago and was coming out to go to the Bienniale but instead I have spent my time at the Peggy Guggenheim Collection. Why Peggy? Well, I haven’t written about it yet but I was a contestant on a British TV show called Mastermind recently. Now this is a BIG THING for me…I have watched MM since I can remember and have harvoured a fantasy of being a contestant for years. Reader, I did it.

I applied a couple of years ago and to cut a long story short, was accepted out of loads of entries and filmed my episode over the Summer. You can find a link to it (episode 13) here. My specialist subject was the wonderful Ms Guggenheim so I felt duty bound to go and pay my respects.

What a wonderful place. I stayed almost all day. Really, you have to go if you get the chance. My phone is charging at the moment so I can’t post the photos but I will return. Just wanted to get this down while I can. See, I’m trying to be sensible!

Treacle

I am in treacle and that’s not a good thing. I am trying to stride through life, I am trying to maintain momentum. But I realise I have to, and I mean HAVE to, pare it down, strip it out and get back to my core. Back to the most important things in my life….family and art. That’s it. So although I have done a LOT of decluttering and reorganising recently I still have a way to go and I have to re-examine what I spend my time on.

I am also taking part in a pilot online self management programme for Parkinsons’ uk which I will update you guys on as soon as possible. It’s great though and has shown me how rich and varied my life and experiences can continue to be. New spins on old thoughts and shared experiences are challenging my assumptions.

Put these two shake ups in my life at the same time and you have a chaotic mix, throwing me around but, hopefully, leaving me at rest in a better place. I’m still slewing aroundbut am trying to get my new bearings and they are falling into place.

Life is so valuable and rare, I want to grab it even harder but the skill I have to learn is how to embrace it without taking in too much. And how to remember to take my meds. Important one, that.

People soup

Porridge tastes better in the dawn

As water drips off my wetsuit 

a chorus of chatter, of laughs and faint screams 

and make mine a chocolate and don’t hold the cream.

the sun slowly lighting us up as it lifts 

and time is so precious 

So relish the gift 

and soon we’ll return to real life – The rat race 

But this is my bubble

A bright shiny place. 

 

Now

I have a confession to make, I have another love in my life. I have been working on another venture and this weekend it took flight. I am now the founder of an arts space here in Stitchopolis. Can you believe it??  Check it out here

Hope you like!

Peck

I was once told that there are two

Types of folk in this world

The ones who leave you safe and warm

And those who leave you cold.

Not cold as in, you just don’t care

No, I mean chilled and hurt

All life leached out because they drain

Your joy by their salt words. 

I see my friend affected thus

Pecked by a ravens beak

Picked up upon with gimlet eye

And gossips thrill to speak.

I find it hard to see this as

I felt the same attack 

But if I may quote that Mr Poe

“nevermore” is now my track…

So no to social bullying 

to those who strike a spark

and no to those who fan the flame

And burn to leave a mark. 

For life is truely much too short

To be upset or cranky

Ignore Those revellers in discord. 

 it’s them not you who’s manky . 

 

Supernova

The timeline is complicated

But unforgivingly straight 

Before the night We shine

We burn

I’m bright, I know

I have letters to prove

To me, at least.

But Perhaps this fire this inner flash

This drive these files this splash

Are my last gasp

My battle cry

Before I start to fade.

I’ll rage against the downwards force

Oppose it with my will

I’ll go down fighting

But I know

I’m going downwards still.

I see it clearly now and then 

I catch a glimpse of truth

And I ignore it

And push on

There’s f2%k all else to do.