Wednesday 28 May 2014

circle of truth

Another brilliant film from the people at Shift.MS to mark World MS Day - fantastic to see a couple of famous faces in there too!

Watching this, I really felt for Gen - I wish I'd kept schtum, rather than bursting into tears in a staff meeting.

Ah well, 20/20 hindsight is a wonderful thing.

But also I recently had to do something very similar in a session at work - the horror, the horror...

Anyway - enjoy!

'Circle of Truth', directed by David Allain and written by Matthew Edmonds, explores some of the challenges that people with MS face when deciding whether or not to disclose their diagnosis to their colleagues. Produced by Rankin Film Productions, the cast includes Simon Day from The Fast Show, BAFTA-winner Lauren Socha, and Skins actress April Pearson.

Friday 9 May 2014

this isn't happening

Ivan the Terrible's hair shirt (16th century). The tsar wanted to die like a monk.
Warning: this post contains language.

You find me today in a typically self-loathing mood. The main reason? WALKING INTO WORK. Again.

I'm currently averaging one day a week walking in. It's really not enough. But I know that I'll always find an excuse - "ooh, it looks like rain", "I didn't sleep well last night", and so on and so on..

To be frank, that's all bollocks.

The main thing that stops me walking into work is fear of unlikely events happening which were talked about enough in my CBT sessions a couple of years back.

Knowing how unlikely these events are doesn't mean that I can switch my brain off. The old drip-drip-drip of unhelpful thoughts can keep any of us indoors.

The day I walked in this week I had a Board Meeting - I finished at 8pm but I felt great all day. Walking home with a friend, he actually struggled to keep up with me.

I know the benefits. I KNOW the benefits.

I just need to bloody crack on with it. And posting this to you is - in a sense - a way to embarrass myself into doing it.

To offer a bit of much-needed perspective, here's a poem which I picked up on Twitter earlier. One of my old Freelance jobs was to do with Literature Development in the East Midlands, and part of that involved me working with Jo Bell. She's a poet and was formerly Director of National Poetry Day - as a boat-dweller, she's currently Canal Laureate for the Poetry Society.

As I mentioned in my last post, any song lyric can mean something to anybody at any point in their lives - see great misunderstood songs of all time like "This Land Is Your Land", "Born In The USA", "You're Gorgeous".

(although Ms CrankyPants I'm still waiting for your interpretation of "I Can't Go for That (No Can Do)")

And the same can obviously be said about poetry.

But this poem - "This Isn't Happening" by Anthony Wilson - is a remarkably accurate portrayal of what happens inside your head when you're handed a medical diagnosis which your brain cannot and will not compute. It certainly took me back to my own.
This is not happening. It happened. Past tense.
One day, every day, eight years, a minute ago.
When they told me, they said, they are saying.
Mr Wilson. Anthony. (Tony). Darling. My lover.
It looks like. If you could. You have great veins.
Here is a gown. Here is a bag. Here are your pills.
Yes, you will. Yes, you will. It will, yes. All of it.
We don’t know. (We will never know). We don’t know.
No. Because. Maybe your genes. More likely your.
It’s best if you. If you can. We advise it. Everyone.
One day, that day, this, after another, today, May.
I am not angry, was not, shall not be. But I am angry.
Today, when they said ‘Actually…’ A minute ago.
With perhaps and maybe. Not No. We love Yes.
Yesterday. When it happened. (Present tense). Now then.
It left, it is leaving, it never. I am still waving goodbye.

(view the poem on Anthony's website)
Anthony was diagnosed with non-Hodgkin’s lymphoma, a cancer of the lymphatic system, at the age of 42. Thanks to him for being gracious enough to let me share this here.

Thursday 1 May 2014

the perils of shuffle

My introduction to the world of blogs and blogging came in the "halcyon" days of the mid 90s. I can't remember the first ones I read but my main interest was the world of the MP3 Blog - how curiously dated that sounds now!

Songs from sites like Bubblegum Machine and Spoilt Victorian Child are still in my collection - either the original files or because (as was often the case) I bought the music in a Real Format.

These sites had something of a sharing, curatorial ethos - similar to the old Compilation Tapes I would force into the hands of friends and potential / actual girlfriends. The blogs seemed to be more generous and personal than simply banging a complete album into a zip file for anyone to download (although it has to be said that those sites have their place too *hem hem*).

Anyway, I persuaded the other members of my band to do one called Domino Rally - as a group of fairly young men with very few responsibilities we had a healthily competitive attitude to finding and sharing new music. And - my logic went - it would enable us to promote our band as people with interesting opinions and taste.

We started the blog in 2005 - our last album of new music was released in 2004 and we played our last gig in 2006. So that worked..? But the blog carried on for a while, even if it was eventually only me posting on it

For reasons too long to go into here, I deleted every single post and comment in 2009.

And for reasons unknown to myself, I've been spending a fair amount of time uploading the posts again...

As part of that, I'm creating a Spotify playlist for most of the songs and it has been really nice to listen to them again and recall a time when music was still the main focus of my life.

This is a song which I heard for the first time in an age (my original scintilating prose is here):

Now I know full well that I was tired and emotional (a plateful of MS Fatigue with seconds) when I heard it. And I also know that any song can be made to mean ANYTHING to ANYONE at ANY POINT in time, depending on what you read into it. But the lyrics really stopped me in my seat the other day:
Oh, just want to push somebody
Your body won't let you
Just want to move somebody
Body won't let you
You want to feel somebody
Body won't let you
Who, who, who do you talk to?
Who do you talk to?
Who do you talk to?
When your body's in trouble
I guess I was having a physically frustrating day!

On a similar musical tip, I was shuffling away quite merrily at home when this song came on.

A beautiful song. The album this comes from was released around the same time as my diagnosis and this song in particular was in HEAVY ROTATION on BBC 6 Music. While I was being cheerily stoical about my diagnosis, my soon-to-be wife was trying to process it all for herself.

I know that she found this song comforting and not-a-little cathartic at the time. It still makes me sad now, but it has a soothing, almost uplifting feel to it. Like looking out to sea and feeling that your problems don't really mean all that much in the great scheme of things. I think it helped Mrs D come to a feeling of acceptance.

I remember we went to see Richard Hawley at Nottingham's sweatiest venue the Rescue Rooms shortly after - it was nice to hear a man with such sophisticated, honeyed tones greet the audience with "F*ck me, there's a lot of you!"