I came across a reference to a fiction book by popular Australian author Colin Thiele (anyone remember Storm Boy from school??) on one of the Australian Arthritis support websites. I can't remember what the website was, though I was prompted to find a copy of the book somewhere. It is called Jodie's Journey and it looks to be out of print. I found it at a second hand online bookstore called Brotherhood Books but it looks like I got the last copy. There is still a couple of copies over at Amazon: though one is a little pricey. If anyone is keen to read it, send me a message, I'd be happy to send it on.
It's what I'd call a short story or maybe even a novella (112 pages) and was actually a little difficult for me to read. I'm not sure how much of the treatment would have changed since 1988 when the book was written with the introduction of the newer biological DMARD's perhaps now used in preference to older ones such as gold injections, and maybe now as a first choice. That aside it is a reasonable account of diagnosis and day to day difficulties even though it is somewhat condensed. This is most likely due to the target audience.
The reason that it was a hard read for me was how much I related to within the story. I never saved the day or had an affinity for horses, though the a lot of the rest was a little close to the truth for me to be comfortable with. There were also a couple of major differences in how the main character Jodie deals with her condition and how I felt in the same situation. I'm not sure this is enough to question the authenticity of the character as every journey is different, however, I do wonder if this is a reflection of an adult's perception of a similar situation or maybe just my own childhood affecting my perception of the situation. I'll get to the examples shortly. All in all, it's not a bad read though I don't know that I'd necessarily recommend it to a kid going through this now. The story was written after Colin received a letter from a fan of his work asking him to write a story about a girl with arthritis as her friends didn't understand what she was going through and she thought Colin would having suffered with RA for many years, spending much of his hospital time writing his other books.
In the beginning of the story, you need to know that 'tinny' means lucky. Apparently this is Australian slang that I wasn't even aware of. I gathered it from the context of the sentences - though it was weird enough that I remembered enough to comment. The rest of the language is probably at about a fourth grade level.
I have a couple of comments to make about how I relate or didn't relate to the story and will expand further at a later date as this few years of my life actually needs more than a single post to share.
Like Jodie, I'm not sure what was more difficult, the pre-diagnosis period where you are criticised as putting it on or making something more of it than it actually is or the difficulty of the realisation that 'you can't' do something that you could before, or that you perceive is something that normal people can do.
An interesting point was made about the cost of alternative treatments like acupuncture. This wasn't something that was suggested to me in those days, though I do relate to the sentiment. The best treatment isn't always one that is available to the masses. An example is the physio treatment that I receive now and have been for almost a decade. It has made an enormous difference to my quality of life and I would certainly recommend to anyone and it upsets me that the quality of care and types of care available to people is directly proportionate to what they are able to afford. How could I condemn someone to the last decade of my life without that treatment? (This rant will be continued in another post)
As an extension to this and back to some of the points made in the story, the whole part about getting a wheelchair wasn't as easy as all that in real life either. I was unable to walk unassisted for quite some time and medicare didn't cover this - especially not an electric one... I was a year later in '89 so not too much would have changed. This was something that we had to jump through hoops for and I eventually did get one which replaced the second hand one that my parents had purchased. It didn't allow for too much more freedom though as I still needed to be pushed (like a baby really) and didn't obtain the independence that I desperately craved at twelve.
Explaining to strangers is always difficult. I think it was easier not to get into it really.
The big differences relate to how Jodie reacts to the commentary about her condition. In the beginning our reactions were similar, hurt and a little pissed at being called 'hopalong' or slow and clumsy. She seems to be ok with the awkwardness and lack of ability to do certain things provided that no-one sees it happen. I was the reverse, the public image seemed to embolden me. It's ok to be lazy, or I don't want to do that and disregarding it somewhat haughtily. In private, sitting there looking at your shoes for example, being unable to do up the laces simply because I couldn't reach them can be a soul destroying moment that isn't too easy to walk away from. It's easy to get into the spiral where you aren't good enough and obviously you are completely useless because guess what you can't even do up your own shoes.
Jodie also seems to get used to the 'hopalong' comment which I never did. The intent isn't usually malicious, though it always seemed to be making an obvious point about my failing to be able to walk properly. It stung. I'd put it on par with someone calling you fat. It might be true, but it doesn't make it a nice thing to hear.
I'm not claiming to be an expert here on anything other than what happened in my own life and how I perceived it at the time and now. One thing that is illustrated and so very true is about those difficult people that know everything about you and your condition including: curing it (why haven't you tried this sooner, seriously), that it isn't that bad a disease (my gran has it and she still walks to bingo and weeds the garden and she's 70, what's your problem), it's an old person's disease (kids don't get arthritis, you are making it up) and just what you should do about it (insert many millions of bizarre remedies here that no one they know has even - several hundred of which I thought what the hell, tried them and they didn't do squat). It annoys me when the advice comes from the well-meaning (and not so well-meaning but arrogant know-it-alls) clueless dolts who are the self claimed experts.
I value quality information and discussions with those who have it. I don't like dealing with the preacher types that seem to feel that they know better than I do about what I feel, think and do. Hell, I might be wrong about the best treatment, or the best anything, but come on, I do know what it actually feels like and how I feel about it!