Saturday, May 24, 2003

I've just read an article at the UK's Independent news site called 'Now I see life in a different way' (19 May, 2003) by Alison Whelan. The writer was diagnosed with Retinitis Pigmentosa more than ten years ago, in her mid-twenties, and gives a very personal account of how she has dealt with RP so far.


Reading the article I'm realising how much the RPList community shapes how I think about dealing with it. Canes - good. Driving - bad. Humour - good. Whinging - bad. Holding hands for guidance - bit clumsy. Sighted guide technique/cane/dog - a sign of healthy acceptance. To read an article by someone not flamed into shape by the list makes me feel about my ribs where the writer might be vulnerable to sharp pointy instruments wielded by indignant fellow RPers. Lines like 'RP is my dirty little secret.' Lol.


I love it, I like people saying how it is for them without regard to how they 'should' be approaching the condition - and the article was positive. My own experience of RP is very different - quite apart from the Louis Vuitton sunvisor Whelan says she wears (for a while I wore an awful Billabong straw hat that someone suggested might be good for when I'm gardening), my pattern of visual field loss is different - smaller patch of vision in front but enough peripheral vision to keep me from tripping over stuff (or maybe I've developed the best scanning technique yet). And that's what's great about reading other people's stories - so very different and yet there are the roll-your-eyes-and-laugh similarities (such as gesturing enthusiastically and whacking someone you don't see) that make it known that I'm not dreaming this disease. (or disorder... or condition...)


Also found at the Independent 'Agony aunts could face prosecution over advice on sex' (23 May, 2003). The wording of a Bill currently under consideration in the UK, which aims to protect children from sexual assault, might inadvertently make it illegal to educate and inform children about sexual matters. No Dolly Doctor! Or whatever the UK equivalent might be...


Sometimes I enter a url into my browser, knowing that it's wrong but not wanting to bother with looking at my bookmarks (why use my patchy vision when I could use my patchy memory?), and then get it wrong. Tonight I found myself at a restaurant called The Iron Monkey (see yesterday's blog to see where I was hoping to find myself). I quickly backtracked and then thought... I wonder where in the world that restaurant is?. So then I'm reading about the
Honey Candied Grapes and Pear Sorbet (Served with Citrus Confit & Bleu Cheese) for $8.00 and the Chocolate Sin (Chocolate Satin Sheets Layered with Chocolate/Nutmeg Mousse and Raspberries Served with Chilled Chocolate Sake) for $10.00 (USD) I could try if ever I'm in Jersey City, New Jersey, USA.


Tara Calishain mentioned in the latest ResearchBuzz that AllTheWeb has a new feature allowing you to convert measurements. So, for example, if someone complains that it's pretty cold... say, 37 degrees... and your wondering if maybe they live in one of Western Australia's deserts and they're driving home just how much heat they can handle, you can a) remember that some people work in Fahrenheit (like nearly everyone in the US) and then b) type into the AllTheWeb search box: convert:37*F . Then you'll know exactly what that person's definition of a pretty cold is (2.777778 degrees Celsius in this case). More about the feature can be found at: AllTheWeb's Conversion Calculator page.


Usually I use Notetab's converter, if I have it open, or maybe, if I can be bothered with bookmarks, the Celsius Fahrenheit Converter at, let's see... Kasaci's Place. Wow, never visited the rest of the site before... the owner is Turkish by the looks and I might pop back to check it out later!


I was hoping to link to the Tuesday, May 20, 2003 entry at Alex The Girl but I can't seem to find a separate url for it... I guess if you happen to read this and you read it kinda soonish, then you'll see it there anyway. The piece is all about people needing to be heard and hearing them. I guess bloggers know a bit about that.

Comments:
The authoritative message :), funny...
 
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