Lago D'Iseao.

I arrived in Paratico on Lago D’Iseao in north east of Italy at 11pm to summer rain. I was very tired and groggy from the journey but also very excited.
I went to Italy with my mother who goes a 4 – 5 times a year for Ballet teaching and examining.

So I find myself in a very small town on a lake. You could turn the clock back 300 years the same produce and wine would still be consumed. (without some of our luxuries).
But it’s not hard to imagine when your surrounds, (man made), are century’s old. Amazing.

My mother was teaching at a Summer school in Sarnico, which is another small town near to us.

So during the day I would explore my surroundings, take pictures, eat & drink and watch life.
It sounds good, and it was but I did things I wouldn’t normally do like walking long distances, exercising my Italian language skills, doing my best to be a normal person and not attract attention to my self.


I walk the promenade next to the lake. There are markets, vendors selling cheese, meats, sunglasses, clothes, anything.
A moment of hot sunlight burst through the full clouds.
The smell of wood fired ovens is in the air as all the restaurants in the village prepare for the dinner rush and the village clock tower chimes from across the lake reminding me of time. We all have somewhere to be.
I look as normal as I can and keep up walking pace with the other people, enjoying the scenario, looking at passers by and the wares.



For Katerina, Gillian, Susan, Giada, Michele & Cristina.

Living History.

I'm going to Sydney this weekend I'm really excited primarily I'm going because my Grandfather turned 97! What a good innings, I love him very much.
I have very fond memories of when I was young from staying at his house in Woy Woy on New South Wales central coast, eating rhubarb that he grew, sitting in the sunlight to dry off after bath time in mornings, going to feed the duck's bread scraps on the lake in his row boat, his impressive tyre swan collection that lined the property etc.

Happy Birthday grandad!

97 and sharp as a tack. (well almost, but that's to be expected).

The other reason I am going is because I was originally born there when we lived on Bronte beach and I have a lot of family and friends still living in Sydney.

Philip the Libraian.

Today I’m in the Oncology Day Unit getting day 1 of 2 of the 78-grams-per-day of Intragram.
I went a month without it when I went to Italy. The result of that wasn’t dramatic, I found I had less energy and I fatigued quicker.

The difference between me and another in my shoes that had no access to help is the treatment and rehabilitation.

I am very lucky and blessed.

If this affected someone else in a part of the world where they didn’t have the access I have. I would hate to think what would happen.

This week I have had my children, gone swimming, (did laps), at a proper pool, had a catch up day with my good friend and old flat mate, had physiotherapy, occupational therapy, speech therapy followed by some more swimming and hydrotherapy. I could write about each experience because it’s all unique and interesting.

I’m just so busy I usually just want to relax and enjoy tranquility, forget about my crazy life for a little while.

One of my former client’s who is a senior journalist published an article in the local newspaper last weekend on my whereabouts and predicament.
It was really nice, it has put me in touch with many similar people.

Being this way can make you feel VERY alone, no matter who is around you or how good things are.
(another thing that hate about this).

I will put the article up here when I get tech enough to figure out how to do it.

My boy has B.M.X. racing tomorrow night, I'm really looking forward to that and so is he.

And I joined one of our public library's late today.
What a fascinating place. I wish I had got onto it sooner.
I think I found my new haunt.

Information.

For those new to this.
Thank You for taking the time to read my updates, please check it often I update it weekly. (sometimes every few days).
My condition causes me to fatigue from talking, so writing is a bit easier for me.
You might want to read the updates from the archives to gain knowledge on what has happened so far.
In particular: 17.11.08 & 25.11.08

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Eye Accessorie Chic.

Is this the latest essential item?

Eye patches are mysterious, cool and sexy. But I already knew that.

Eyes are Window's to the Soul.

Italy was bitter sweet.
I experienced some amazing things that are more than enough to stimulate and inspire.
I can’t say how many times I thought to myself “I could disappear and stay here.” But ALWAYS holding that thoughts hand was this terrible affliction.
Like a shadow.

I wouldn’t leave because of the relationship I have with my children.

There were so many times when I would do my favorite thing and just watch the world go by quietly.
Not needing anything. Inconspicuous. Just being.
A moment where I would let simplicity and normality take over my imagination.
Like a bubble being burst I would suddenly realize the epitome of what I oppose, due to this illness my life is anything but simple. I am reliant on society.
No just normally walking somewhere.

“Do I have my tablets?”
“Do I have my eye patch?”
“Do I have my walking stick?”
“Will I make it?”
“Who will I let know where I am going?”
“I remember when I didn’t have to do ANY of this.”

Then I would see, hear or taste the most amazing thing ever.

Some things have changed for me like I am only wearing my eye patch when focusing on something for a long time e.g.; watching a film or television or reading. My self confidence took a REAL beating when I got sick and I built up reliance on hiding behind the eye patch, (i am very conscientious of people looking right into my eyes, because i do that), having no eye patch allows me to look normal and doesn’t attract a heap of unwanted attention.
It gets me used to seeing people without the eye patch, (which i would sometimes avoid), and people used to looking at me and looking at my eyes.
It also gives me a wider field of vision and will maybe strengthen up my eyes to sort of coordinate?..

Don’t get me wrong I know a heap more about my cerebella dysfunction. I am a little disappointed there is no quick fix though.

I will write at length about Italy though there is just so much to enter, more reading to endure!
I did an interview for a journalist, (which will be in this weekend’s paper incidentally), 19 questions took me 6 weeks.
Thank goodness I don’t have a deadline to adhere to.

Oohhhhhhh I'm Back Y'all! & I'm Wac Y'all!....

I find myself back in Australia this morning, (9th july), feeling very taxed after a very heavy schedule.

I try and update this at least twice a week but due to the lack of time and remoteness of locations it has been about 2 weeks since I updated it.

So thank you if you took time to check it but I am sorry for the minimal information.

There is a lot to disclose.
Unfortunately I have not come back as my usual strong, fit, shopped out, healthy, work weary self. I am just back.

I am very glad I went though, the Doctors we saw agreed that all of my treatment was the best thing to do.
Unfortunately there is not much information on my illness anywhere. In fact, I thought I was maybe 1 of 15 people with this illness in the world, (which didn't make me feel so alone), apparently there are maybe 15 to 30 similar cases but MAYBE 5 people like me that are known...

I had mixed emotions (to say the least) about going away.
My primary emotion was if the doctors over there could push some magic button and my life could return to the similar way it was headed.

Alas! Not the plan..


And how is the news about Michael Jackson?! Crazy!

I have long since missed the hype, (i didn't even hear the initial news for 12 hours), but it wouldn't be right for me not to pay homage to the man that made the moonwalk famous.

The shock hit many people in various ways, I was fairly nonchalant about it until I read this email from my little girl whilst I was away:

[ I'm doing well but when i heard Michael Jackson died i cried. love u bye xox ]

[ yes that is a sad thing. at least he made some beautiful music that will last forever. don't be sad honey. i love you. ]



My daughter is 11.
His passing will make itself known to most.
He will be survived by the legacy he left with us.

I will rest, make a few important calls then write some more.