Living with a disability

Well the recovery never really happened. I have not given up hope, but I am not waiting around for it. I have been left with what I estimate to be about 50-60% of my previous functionality and energy levels. If i step outside my 'energy envelope' - I do too much exercise, work, stay up too late, stand too long, walk too much, socialise too much, - then I pay the price the next day and sometimes have to spend an entire day in bed. I have not got very good at 'pacing' myself as I have only really just come to terms with the idea that I am not going to recover in the immediate future, and I have been dealing with the grief and denial that goes with that for some time. But I'm working through that and the good project manager that I am, I am sure I will get together a program to try and optimise the resources I have left. The first thing I need to get on top of is my night time schedule. I get into a bit of pain, zone out with TV or computer or both and don't go to bed until late and so feel like I need to sleep in the next day. I sound like a petulant teenager really. Well, I need to set a reasonable curfew for myself, and some routines for getting off to sleep.

And the mystery disease is: Guillain Barre Syndrome

After some 8 months of symptoms ranging from almost not being able to walk, blurred vision, incredible pain in my back and legs, loss of feeling in my legs, feet and hands, not being able to breathe at times, bladder and bowel problems the details of which I won't bore you, intolerance to heat as I have stopped sweating, not being able to ride my scooter or bike, nausea, dizziness, headaches, digestive problems and a month in hospital, I finally got a diagnosis - Guillain Barre Syndrome.

Guillain Barre Syndrome itself is very rare - 1 or 2 people in 100,000 get it, but of course, my version had to be a rare variant called Autonomic (sudomotor) variant of Guillain Barre Syndrome. The neurologist told me I was the second one he had seen in 10 years with this varient. I should recover, but he is not sure how long it will take.

Two weeks ago, just when I thought I was getting better, I got a stomach bug and it was like having a mini relapse - and I really panicked. My walking has deteriorated, my sight has gone blurry again, I have been really struggling. I'm slowing improving, but by lunchtime my leg is dragging on the ground and I can hardly move around.

I might feel terrible, but everyone is telling me how good I look! I can highly recommend a week of fasting for that fresh faced model look.

The one that did not get away

Here is Rae with the monster zucchini. Any of you who have had the pleasure of growning zucchini will know that one of the curious things about them is that they seem to be flowers and then finger sized little zucchinis and a week later they are have put on an exponential growth spurt and taken over half the vegie patch!

Since I got back home I have been watering my Zuchinis which are just about to mutate into monsters - I had better pick them tomorrow morning before they take over the neighbourhood.

Time to get back into the vegie patch. I made a a wonderful gardening date with my friend Marian and her daughter for the week after easter to help me tackle my community garden patch which looks like a scorched landscape at the moment - with a nice crop of weeds - how come they aways survive?

College Park Memoirs

I've been in College Park Maryland - a kind of outpost of Washington DC, but in another state for three days now. It has been a real eye opener. We spent yesterday touring the sites of DC - all the monuments and cemetaries. One thing I did not realise was how close the pentagon is to all the monuments and the white house - in fact, its about 1 minute flying time between the whitehouse and the pentagon for a 747, even though they are in different states. So every time an airplane took off from Ronald Regan airport and flew over, it was quite nerve wracking.


The outskirts of DC are kind of - well - square. All the buildings are square and many are red brick in a kind of colonial style. And even the new places are boxes - so South Parkesk in their shape and appearence. Tonight we commuted into town and went to a fantastic restaurant - Maggiano's in DC. The food was fantastic, and even though it was a pretty swish restaurant - it was only about $25 a head. We has vodka gnocchi with tomato and a spinach salad with blue cheese - so nice. We are going back next week.

Tomorrow we are off to Georgetown University, so that will be interesting. Lots of photo's of squirrels the last few days as they are so cute but apparently attack if you get too close.

Three days in S F

Copy of email to Kerry and Grant

I have had 3 days in San Francisco and I
have warmed to the place and its hills.

I keep meeting Aussies of course - this hotel is full of them. Actually it is a great little hotel - very inexpensive but very well kept, nice staff and a fabulous breakfast buffet so you can stock up for the day. Today it was pissing down rain and cold, but cleared this afternoon to a nice sunny but cold day. I walked in the rain to Lafayette park -
which is in the swish part of town near where I am staying, because the guidebook said it had great
views. All I saw was some soggy gum trees and a wet labardour. I walked down to the california st cable car and found on the way my favourite shop in the USA - wholefoods market - it just has organic everything - imagine an organic store the size of the average Coles or Safeway - no coke -
they have their own cola (organic I guess) and lots of nice stuff. You can even buy dinner there and eat it for a very good price. I think I will head there tonight as I suspect the next two weeks might be a little fast food filled.
On my cable car ride, I took the street car and I went down to the castro - which is the gay end of town, very nice spot. Then I went to the SF mueseum of modern art. It was, well, modern. The building is spectacular, but their art besides a few pieces was a little dissapointing. There were
some interactive exhibits which was good. They had a lot of video, and there was two side by side videos of Yoko Ono sitting on stage getting her dress chopped up in little pieces by the audience in
1965 and a more recent encore. That was actually very interesting. I was also a bit tired and not paying attention and I lost my possum fur hat - i think it was whisked away to be an exhibit.
You do notice some subtle differences between LA and San Francisco. Take for example the bums. In LA - they are polite and pretty clean. They have luggage and not shopping carts. They comb their hair when they get up from sleeping in the park in the morning and their clothing is clean. In San
Francisco, the bums are more like bums, they can be a little pushier, they nearly all have shopping trolleys stacked with their belongings, and they stuggle up and down the steep hills here and there.
The other night I stepped around a guy down at the wharf. He was sprawled across the pavement, asleep or unconcious, in fairly grubby condition with an empty bottle and a neatly written sign on cardboard. 'I need a hooker, please help' I'm not sure that is what he need.

Monterey and Pebble Beach

A big day today starting off with getting petrol - took me a while to figure out you have to pre pay here - and set off for the Monterey Aquarium. What a fantastic aquarium. It was set up in the early 1980's with the help of Mr & Mrs Packard of the Hewlett Packard fame with his millions earned from scientific calculators (well I know I donated at least $120 for one back then) and large computers. Well done Packards!

The stunning thing about this place is the otters - there are around 6 in all (all seem to be girl otters) and they are fantastic. They are big - probably about 1.5 metres with tail by my estimation. All are permanent residents due to behavioural problems (they go up to people when released) or health conditions. They did seem quite happy and jolly I must say, and the otter wranglers did appear to do lots of things to keep them entertained.

All of the exibits were outstanding, but the jellyfish were fantastic. Here are some of the Jellies I snapped.

In the afternoon, I hired a bike and road around the 17 mile drive to Pebble Beach - amazing houses and golf courses and fantastic beaches and rocks. Here is one of the tees on the Spanish Bay Golf Links

Day Three -San Luis Obispo to Monterey

A facinating day on the road trip. I started off at 8.00am from San Luis Obispo - a college town. Coffee from the Black Horse- Cafe Latte with an extra shot, but still not real coffee. An nice town, but off to Hearst Castle for my tour. I booked this on boxing day from Port Fairy.

Hearst Castle is quite amazing- full of European gothic and renanance works of art - the most exquisite tapestries I have seen. The money this family had/has is palpable in the buildings and artwork.

Off down the road along the beatiful Californian Coast. A stop off to look at the elephant seals which are almost as long as an average car.

A drive along the coast was most stimulating. I am getting quite used to driving on the wrong side of the road and I have discovered that it is only when I am tired that I find it hard to cope with staying on the opposite side of the road.

Well this is California - the home of self improvement, so I bought a talking book - Jack Kornfield - on Buddhist Psychology to listen to as I travel along. It has been really fruitful to listen to this book - as it has many valuable insights.

The night in the Motel 8 at Monterey - it has free wireless broadband, microwave, fridge, TV and its spotlessly clean. What is more, it is just accross the road from my new favorite shop - Wholefoods Market. Imagine a supermarket full of organic and healthy food, with take home meals, organic beer (I'm drinking a californian organic belgian style beer now) real fruit - fantastic.

Tomorrow - the Monterey Aquarium and in the afternoon, I'm deciding between a bike ride around to Carmel, or a whale watching tour. It is good to stay in one place for more than a day, and I have done most of my travelling with only 110 kms to San Francisco where I will be for three nights including New Years.