A Summer's Day

A summers day

Resting

Taking in

the splendour

of my tiny garden

Proud

that within

the limitations

of ME

I am able

to create

a little bit

of heaven.

Honoured

Being granted

a visit from

a goldfinch

and

it's young

Shocked

Robert

my cat

was

bird watching

too

...

Edvard Munch meets Louis Armstrong

A few months ago. I won runner up in a writing competition organised by the Irish Wheelchair Association (IWA), in conjunction with the Irish Writers Centre . I was 'chuffed' to say the least that my writing received the approval of the IWA team and judicator Michael J. Farell from the Irish Writers Centre.

You can now read my story Evard Munch meets Louis Armstrong on my website at Other Writing (page 11) or if you are interested in reading the three winning stories in the IWA magazine, including interviews with the authors, download a copy of the Summer Issue at Spokeout Our stories are at page 14-20.
I look forward to read your response/views on the story! Thanks

My summer holiday

I know I have gone on a bit about Second Life (SL), but where else would you go for a quick holiday, where the only costs is the energy needed to click the computer mouse...

... After a mishap in a canoe tour - where I (Yona Spearsong) was chucked out into the water - I decided to explore the da vinci gardens- whale watching centre. I had 'found' a landmark card (or whatever the term is) in a treasure chest in the sea near the Murdoch Institute, during a swim with fellow avatar Dianne last Sunday.

After a 'water dance' in which I truly felt free in my body (the power of suggestion?) I took a spin on a seahorse. How magical. OK, I admit, I do have a brain which accommodates magic and fantasy rather freely, but still. Where else do you get it? I started to enjoy myself, and felt the tension from the A&E experience last week and the subsequent exhaustion and illness, float away...

... so, I played a little piano to celebrate. Under the sea. At the south Pole, apparently. Where else? Unfortunately I didn't have any money on me to give the dancer a tip...

I 'teleported' to dry land again and met some families out having fun. To my delight Magic was in the air here as well. There was a huge feather waiting for me to go on a 'tour-de sky'.

I finish my adventure holiday in a treehouse. Climbing the rope ladder without any difficulty, I relaxed by a crackling fire, overlooking the sea, and having the company of a squirrel, an owl and.. a bottle of wine!

I never ever thought I could get excited about the computer's possibilities, but I have to admit, visiting SL at times, does the job, and in a way has given me 'fuel' to get on with Real Life.

Thanks again Kirsty and Dianne, and the creators of these magical worlds at our fingertips.

Brilliant Madness

When looking through my photographs, I came across this one, which always makes me laugh out loud, and though I'd share it with you.

We were in Haarlem-Holland ('07), and heard some commotion coming from the main square. (Incidentally regarded as one of the most beautiful squares in Europe... ) Anyway, what we found were lots of young women wearing stilettos. They were there to run. Yes RUN! Over the cobble-stone road, around the cathedral.

The first ones over the finishing line jumped into a waiting limousine, to bring them to Amsterdam, for the final race. There the winner would be handed a cheque of €10.000!

Worth a try I suppose!

The stilettos were measured before the run, to make sure they were the required height.

I love the girl, first from left, upright as if running a normal race, in runners. And also the girl spectacularly in mid air. Stiletto left on the road.

It took a long time before we could come to terms with what we had just witnessed.

Apparently the stiletto run is now a yearly event. Brilliant Madness!

So... what am I going to do about it?

As much as I try to get a way from the M.E. part of my life, it presently doesn't seem to work. 'It' is too much at the forefront. Party due to the infections and their influence on my overall well being. Partly because of recent information and books about M.E. I received through various means. For example a message I received via my website last night, about a new documentary What about M.E.

M.E. is for real, for me and for many, many other people. Many not as fortunate as me to have recovered a great deal.

Last night I wrote in my notebook: "So... what am I going to do about it?"

A few months ago I had resolved to 'add my voice' to bringing knowledge of M.E. to the wider community. That is a great thought, until I am too much confronted with this blasted illness, and I want to escape. I didn't make it easy on myself by 'drooling' over a beautiful Dutch looking bike in a new bicycle shop in Dungarvan. My biggest dream - cycling a bike again. I even had a red jacket picked out... Tough... :-(

So... what am I going to do about it?

Well, at first I just wanted to 'chicken out'. Ignore my resolve and just do what I like best; write, work on the Tree Project (*), do some gardening, or read.

In terms of my blog: write about fun things, like books and writing, and making soup out of homegrown produce, and add some lovely pictures. Then something Mariela keeps reminding me, came to mind: "Your venom is in your pen." How can I 'chicken out' with that thought stuck in my head...

While looking for the correct spelling of venom in the dictionary, (I couldn't find it, and looked under bee in the hope I'll find the name of the sting... ) I came across many words that made me think about what living with M.E. can be like for many people.

Bedraggle: Wet (garment) by trailing it or so that it hangs limp. Sounds like a clear, although rather unfortunate description of a person with M.E. - the person being the garment...

Bedrest: confinement of an invalid to bed. Bed-rest has taken on a whole different meaning...

Bedtime: usual time for going to bed. Permanently for some. Several times a day for others...

Bedsit bedroom and sitting-room in one. For many that is how they live, although they might have a whole house at their disposal, all they see is their bedroom (bedsit), or is there such a word as "bed-lie"...

So here I am. Have I decided what I am going to do about it?

Well, after writing and sorting out my thoughts, annoyances, wishes and dreams in my notebook last night, I came to the resolve that blogs are about writing, and maybe, just maybe, I can reach one more person in this big world of ours and create an understanding about M.E. And at the same time I get to do what I love best. Writing!

(*) Leaves I created for the Tree Project

Books, again!

Well, my brain is somewhat able to function again this morning. Maybe it helps to see the blue sky! The past few days, heaven helped me water the garden.... a little bit excessively, but still, thanks for the help!

One of the bonuses of having fits of coughing in the middle of the night and being unable to go back to sleep is, that I had time to read! And as it happened I had just bought a pile of books! Time Bites, by Doris Lessing, Irish Women Letters, compiled by Laurence Flanagan, Ghost light by Joseph O'Connor, and They Came like Swallows, by William Maxwell. (All courtesy of Vibes ad Scribes in Cork. A 'dangerous' place to go into...) From the library I borrowed Sea of Love, Sea of Loss - letters to Olive by John Quinn. I haven't had this many books in one go for along time!

During the writing weekend in Cuisle (thanks to the IWA writing competition- see archive ) the facilitator, Michael J.Farrel, suggested reading to help with current writing projects. Good plan!

I started with They Came like Swallow and I simply loved it. Devoured it!

The beauty of the story, the great use of language, funny, sad, brilliant imagery. I'll give you a few samples: The Koenings were German, but they couldn't help that; Blindfolded and set down like the suitcases, Robert would have known where he was; Bunny saw that there was arithmetic in her eyes; He turned his head quickly and focused his attention upon the Japanse pilgrims who were climbing in and out among the folds of the curtains.

I was overjoyed to have found this book, probably because I loved the cover and the title.

This book is now shared First Place with Tove Jansson's book Fair Play.

Next choice was Sea of Love, Sea of Loss - letters to Olive. I remember John Quinn on his great radio program 'The Curiuos Mind' at one time reading a letter to Olive (his wife who had passed away). The bit I remembered was about a 'down and out' he met in St.Stephens' Green in Dublin. '... he embraced me (I can hear you laughing!), leaned forward and whispered in my ear: "The seed in your heart shall blossom...'

This little line meant a lot to me when I heard this and was in the midst of a 'rough time' myself. Glad, to have read it at this point in my life, when I feel 'my seed has blossomed!

It is funny how of late I have these lovely little 'flutters in my belly' when I sit in the 'reading chair' in my study/library/ (office/spare bedroom/storeroom). I get this sense that something creative is bubbling up in my belly. It is even more exciting as I have no idea what is to be 'born'!

As even seeing the pile of books, is enough to set the butterflies free, I can imagine that the 'creative bubbles' are down to a writing project. Although I'm well to aware that writing for me is never just writing. For me a book is more of a book, when there are images in it.

So, what's in store? The only thing I certain about is, that whatever I'll write will be close to my heart, and will be writing about my world, either life in my beloved garden, or the "world in my head" as in the Cirrus Chronicles (of which the second story is about half way). Reality and fantasy. I can live with that. Watch this space, is all I can say. (That is, ... if you are interested to read about how the creative bubble exploded? :-)

As real as it gets, and confusing at the same time...

like,... can anybody explain why my ankle is really painful, because I have a respiratory track infection...? This reminds me of a Dutch comedian of at least 35 years ago, who used to say: "If I press here (on his chin) then it hurts there!" (pointing at his knee)

For the past month it is as if all sections of my respiratory track; mouth, throath, chest, were jealous of each other for getting 'attention'. Recently the sinuses have been fighting for their moment of fame: "Me, Me, Me! It's my turn...!" Another dose of antibiotics later and feel more and more aware of this 'blasted' ME. or is it just me?

I felt very sorry for myself earlier, as I had, yet again, missed a birthday party of a good friend. I felt/feel too ill to leave the house, and to be among people. The pain in my body was too much to bare. So, I go and sit in the bath, and fill the bath a bit more with tears. Bath full enough and I feel guilty that I am so needy, so ungrateful.
At the same time I wonder how on earth I remained (some bit) sane when I was really ill for years, not just weeks. ( I am sure I had my 'moments' then too!)

My thoughts move to how lucky I am with my lovely home, unlike the people in Haiti who don't have any. They barely have a roof above their heads, and if they have, it probably will be washed away, not by their tears, but by the next hurricane. Who am I to complain?
I am grateful also for my creativity, for the support of friends, for the fact that I am able to write, for the invention of pain killers, hot water bottles, and for the promise of a 'granny drive' tomorrow. A drive to the seaside, or anywhere, just to be away. The promise is enough, I don't even have to go.

I feel better now, at least in my mind, my body will catch up some other day.

Is M.E. for real?

A day of contrasts... to say the least.
I received a book in the post "Lost Voices- from a hidden illness". A book about young children and adults severely effected by M.E. Later I went to the library and was given a DVD that was made in 2004 during the launch of the Fit to Fly DVD. Re-living that day, made me swing from pride to distress and back again.

To add some fun to the day, I brought a visit to the M.E. centre at Second Life. After reading about an autobiographical novel written by a person with M.E. 'The state of me' I went looking for the beach to relax. On my way, I came across a trampoline.
There I was jumping to my hearts content, (without getting pains all over my body that would last for months, as after my last real trampoline adventure) another avatar joined me. She didn't jump, but asked for an introduction.
I was asked if I was a lecturer, or a visitor. I told her about M.E. and that I come here to do the things I can't do in real life.
To my absolute horror, she responded "is M.E. for real?"

I did get an apology, but it still leaves me rather horrified...

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!