Monday, 10 May 2010

ME/CFS art exhibition



A stunning art exhibition opens on May 12 in Second Life to coincide with ME Awareness Day. For details click here and scroll down to see more stills of beautiful art work. Chapter One from my book will on display too (in the library). When Kirsty Best - the director of this wonderful virtual ME/CFS centre - approached me about having some of my words up, I was pleased but not entirely sure, I couldn't envisage, having never used Second Life, only vaguely knowing what it is. Now, I'm simply blown away by the clarity and realness of it all. If you wish to walk through the exhibition proper you can join Second Life here. I confess I found this a little odd at first, I ended up in a bizarre location where an avatar with high heels and pointy breasts fired at me with a machine gun. I think I will stick to the art exhibition. I have often thought that the isolation of ME, especially severe ME - or any long term illness - is different now with the Internet. When I was at my worst, phonecalls and letters were your contact with the outside world. Now there is all this. Fabulous!

8 comments:

Kirsty said...

Thanks Nasim! Yes there are strange parts to Second Life, sort of like the Internet in general. But there are nice parts too! Like at the ME/CFS Centre. I hope you will be able to drop by our gatherings. And feel free to use the space as you like. It's open to anyone with ME/CFS and their friends and family.

Cheers!
Kirsty Best (Kirsty Bearsfoot)

nmj said...

Hey Kirsty, it was a little bizarre, I just let this person shoot me, I did not know how to get away and neither could I really be bothered, it was all so pointless and violent, but also a little unsettling.

I have been back to the exhibition a couple times, it does take a while to get used to navigating but it is such a beautiful and calm place, and as I said in my post the art is fantastic. You have done a great job of putting it altogether, and I was pleased to find my pages displayed in the library, next to the ocean. All quite surreal.

Amy said...

After reading this, I went to check out Second Life for the first time. I joined, walked into a kind of welcome centre, tried to change my outfit (ended up with a polka dot skirt on over the biker outfit I was already accidentally wearing and couldn't take either of them off). Then bumped into another newbie, from Denmark, and had a little chat. Tried to wave goodbye to him but wolf-whistled by mistake. Walked into a wall. Couldn't navigate to the ME/CFS centre, got too exhausted and left! It's surreal, but I can see it could be good...

Can you tell me how to access the ME/CFS centre? I might have another go when I've recovered!

nmj said...

Amy, You have been having fun, I didn't even accessorize! Some people spoke to me - not the one with firearms - but I did not reply, I just did not have the will, was so wrecked after navigating, and a bit cautious, I suppose. Getting to the ME centre is tricky, if you open SL and type in the url or Surl, and click Teleport you might get a message asking to choose an application but when I chose my browser my laptop just when crazy and froze. Kirsty suggested the following: 'I would open up the Second Life software first. It will have been installed on your computer somewhere (check in programs). Log in. Then open up www.tinyurl.com/me-cfs and click teleport. You'll go straight there. I would suggest you "landmark" the centre so that you can always come back (under the World menu, select Create Landmark Here).'

My SL shortcut was on the desktop, it was easy enough to find ME/CFS centre via that. Good Luck! I actually find it all quite exhausting, I would find visiting a real exhibition easier, but I am just not v literate when it comes to interactive stuff. But I can also see the huge plus for those who are too ill to be out and about.

You should submit something!

If you get stuck you shd email Kirsty, she is on the link in the actual post.

greenwords said...

Nasim and Amy, reading about your experiences made me laugh! I haven't looked properly at Second Life yet, though am v keen to see the exhibition, but suspect my experience will be like Amy's. I'll have a go at following the instructions on how to get to the ME centre after I recover from my last post. Awareness week, I tell you, it's a killer...

nmj said...

Hey Greenwords, I would go straight to the exhibition, once I had registered, then you will avoid being shot! The clothes thing I just ignored. Good Luck!

Kirsty said...

Hi all,

Second Life is complicated for sure, and like anything takes practice. It might not be for everyone. But for some people with ME it's been a real life-saver.

I take inspiration from Agnes Sharple's story. She did the installation "Pretending to be... Frida Kalo" on the roof of the ME/CFS Centre, and some of the paintings. Like many of us, she really struggled at the start with Second Life. But now she derives a lot of pleasure from SL:

****
Agnes Sharple

As a person who lives with a chronic illness, I have been freed by Second Life--which has become my first life in many ways. I can now do the things that I can't do in real life and it also takes attention off my condition. Second Life is my window to the world and I have been blessed to meet so many great people I never would have met if it wasn't for my illness or SL.

It took me a long time to get used to SL. In the beginning it was confusing and complicated, but as I no longer have the concentration to read books or papers and don't have a TV, (TV bores me anyway), I found that it was nice just to look at my computer screen and "keep myself busy" that way, and slowly I started to interact with others and got myself a "brand new life"!

These pictures illustrate what SL is to me. I can sit in my bed and still "travel the world". For me SL is a mix of reality, the virtual and dreams.

As I said, I've been freed by SL.

Thanks to all the wonderful people I've met in here, who made me, for a short while, forget how I feel. That is precious to me!
******

I would also suggest that if you are interested, you sign up for SL through Virtual Ability: http://virtualability.org/signup.aspx. It's a safe space and they offer a great orientation course.

Cheers
Kirsty

nmj said...

Hey Kirsty, yes, i can see how SL can be a liberating, vivid experience for people with severe ME, i really can!