You’ll find two articles by me about the process of writing this work elsewhere on this blog (under ‘Writing About Disability’), as well as two reviews of the published book. The book is now out of print, so I present to you here two versions of it.
The ‘Thesis Version’ contains all the original poems in their original form, and also a whole lot of stuff that was eventually edited out by the publisher – this includes quotations from drug company drug inserts, a series of relevant quotations, and a bibliography.
This is the version I prefer, as the quotations give the sense of what it’s like to be diagnosed with an ‘incurable’ condition that is being blitzed by endless trials of different medications, trying to find something that works. I feel this gives the text an added element of relentlessness, not just with the disease process, but also with the treatment options, which is very much the feel I was going for.
However, I DO want to stress that I continually counsel people on Rheumatoid Disease online forums to stop freaking out about possible ‘side effects’. These lists can be daunting, and scary, but it’s important to keep in mind that drug companies are required by law to list ALL reported side effects, even if they only occurred in one patient out of 100,000. Fear of side effects is a very poor excuse for avoiding early and aggressive treatment, which all experts now counsel as correct protocol to, as much as possible, avoid joint destruction and permanent disability.
Also, since this text was written, the new, immune system targeting ‘biologic’ drugs have become more widely available and these have been game-changing for many patients. In my case, ‘Enbrel’ brought me back from bedridden to complete remission in 2005, which was pretty miraculous. I still have the disease, and the joint damage from earlier attacks, but for the past ten-plus years my Rheumatoid Disease has been much better controlled due to this treatment and I am extremely grateful to the Australian Government’s Pharmaceutical Benefits Scheme for publicly funding it.
The pdf file below is the ‘final text mockup’ as designed by Jeffrey Harpeng, and edited by Ynes Sanz, for PostPressed just prior to publication in 2006. It contains a specially-written ‘Introduction’ by me. I am thankful for the late John Knight, for his faith and belief in this project, and to all who helped with design, editing, layout and marketing.
Cover Art for published version: