Sunday, July 4, 2010

Meeting of the Jelly Bellies

This morning I remembered (in time) that there was a meeting at the Murdoch Institute for M.E./CFS in Second Life. To my delight the meeting room was full of people, or I suppose the correct term is avatars? (I 'googled' the term: An avatar is a computer user's representation of himself/herself or alter ego. ) So, the room was full of avatars, in all sorts of wonderful and fantastical outfits. My top rating goes to 'Dianne', dressed as a fairy! Wonderful! I am a little jealous, as I have just about managed to change into a t-shirt and trousers.... as for my shoes... I (Yona Spearfoot) am now walking on what I can only describe as 'shoes with halos'. (Help to change them, gladly accepted!)
Getting the hang of this second life is almost as challenging as living in the first one, but at least you are only one click away from ''quit' and, presto, Yona Spearfoot has gone to 'virtual sleepyland' for a while.

But, my goodness is it fun to be there.
Walking into doors and walls, which I had given up in my first life, I relived here in full flow, BUT it does not hurt. It just makes me laugh! The time I tried to 'have a drink on M.E.' at the exhibition (see earlier post)... will I tell you?... I obviously clicked the wrong button as I ended up standing on the table, next to the bottle of wine and the glasses,... and that was even without a drop of alcohol in my avatar body.

Second life is also fulfilling my dreams. It is possible to FLY (at last, Fit To Fly!) A wonderful experience in which my (then dress) fluttered in the wind. The landing it even more fun, as one lands rather ungraciously on the ground. One time I landed in the sea and found myself walking among the fishes.
By chance, I found a hot air balloon waiting for me to fly in.

Yes, there have been some embarrassing moments too. One that I recall is when I was creating a sculpture in the sandpit. Again I clicked on the wrong button and found myself sitting in the sandpit, in my knickers... So glad that nobody else was there!

Of course there is a serious side to this M.E. Centre in Second life. (SL)
'Kirsty Bearfoot', who's mother has M.E., became passionate to make the condition more understood, and to alliviate the fact that so many people with M.E. are isolated. Many are housebound or even bed bound. Kirsty received funding from the Australian government to research if a group on SL, would alleviate some of the isolation that people are experiencing.
I think she has succeeded.

SL is a place to be well, to have fun, to have a body, an avatar, that is healthy. It is a place to relax, to meet other people, to sit by the sea, or a crackling fire.

There are regular meetings where people can meet others with the condition/or their family members or friends, and talk about their treatment, about their isolation, about anything really.

Today there was quite a big group and the discussion was about the Soy Kefir research. Dianne, a regular visitor to SL, (who has brought me around exhibitions and sat with me in the sunshine), said that there was a slide show about the research in 'the other room'. It was decided that we move there. I had to laugh when we all stood up, and manage to loose our guide. There we were, this wonderfully weird looking group of avatars wandering aimlessly in the hallway.

All gathered again, the discussion continued about treatment. At some point someone ('Petra' ?) asked 'does anybody have a bloated belly?' Many responded with a yes.
Dianne wrote on her message The Meeting of the Jelly Bellies.
I thanked her for given me the title of my next blog!

Murdoch University is a good place to visit, for anyone with M.E./CFS (warning: do set a time limit!) or for anyone interested to learn more about the condition. There is lots of information available there and a quite touching exhibition of works and words created by people with M.E.

Thank you 'Kirsty' for inviting me to this world, and for 'Dianne' to be my guide and companion.
I wish you all well!


slothgoth said...

*wave* I visited for my first meeting yesterday (as 'Xanthe Graymark') and had a smile on my face by the time I logged out. This is a wonderful way to fight isolaton - not just of the physical kind, but that of being surrounded by people who don't 'get' ME. It is incredibly comforting to say something like 'sometimes I have to put my arm in a sling' and get as a response 'yes, I do that too' rather than looks that say 'you're just odd'. 'Kirsty', I hope you are as proud as you should be of what you have created.

Kirsty Best said...

Wow guys, I'm so happy you are enjoying the Centre! :))))

For anyone interested in learning more about the ME/CFS Centre in Second Life, feel free to visit our website and join our mailing list.

- The ME/CFS Centre website is:
- Join our mailing list at: (You need to create a Google account if you don't have one, or sign in with the account you currently have).
- We have three regular weekly meetings in the ME/CFS Centre in Second Life:
---Monday at 6pm Pacific Time (GMT-7)
---Thursday at 3pm Pacific Time (GMT-7)
---Sunday at 3:30am Pacific Time (GMT-7)
- The Centre is open at all other times for visiting and browsing.We invite all those with ME/CFS and their friends and family to use the ME/CFS Centre and attend our gatherings and events.

-To visit the Centre in Second Life:
All you need to attend is a Second Life account, available for free. We suggest those with ME/CFS sign up through Virtual Ability: If you have any problems getting the confirmation email once you click "Send Email" on the registration page, check your spam folder as it often ends up there.
Once you have an account and have downloaded Second Life, the Centre can be accessed through this URL: http://www.tinyurl/me-cfs All you need to do is open up the Second Life application on your computer, open up the URL in your web browser (http://www.tinyurl/me-cfs ), and then click "Teleport now" above the image of the Centre.

Kirsty Best (aka Kirsty Bearsfoot)

Corina Duyn said...

Thank you Janie, it was a pleasure to meet you yesterday
Kirsty, thanks again for setting up the centre and for adding more information about this wonderful place.

Cusp said...

I visited when the Art Exhibition was on but found it really hard to navigate and exhausting in terms of concentration. Think I'm just too past it for 2nd Life stuff. There's enough going on in this one for me atm. Still it was fun and my avatar looked great -- much better than I ever have LOL :O)

Corina Duyn said...

hi Cusp, I agree that the exhibition can be hard work, as there is so much to see. I just look at a few art pieces at a time, and then go outside to relax. That is probably what I like most of SL, just lying on the beach, or sitting by the crackling fire, or have a chat with people/avatars I would never get the chance to meet otherwise.
On another note, being involved in the ME centre has meant for me that I am not 'crazy'. M.E. is as real as it gets...
I LOVE the looks of the different avatars. Weird and wonderful. In comparison to those, I look very 'ordinairy', but well...!

Kirsty Best said...

Hey Cusp, you might want to try the "virtual CamTour." We set it up after the exhibition launch. You can see the whole exhibition without having to move your avatar around. Thanks to Traskin Snakeskin for his amazing programming on this (and one of our loyal ME/CFS Centre members :)