Over the years, and especially very recently, I have asked myself ‘why am I being punished?’ I have never done anything to harm anybody or anything – well I might have plucked up the courage to kill a few spiders in my time! – And yet I feel as if I am not allowed to have a break from pain and suffering. When I started out along the path towards publishing my novel I began a handwritten journal. A notebook I carry around so I can just write stuff down. It can be anything from the way I’m feeling to where I am on the path. Somebody once said to me that I should write a book about living with an autoimmune disease, and why it led me to writing a novel in the first place. ‘Great idea!’ I thought, however, in the short time I have been writing I have discovered that now there would need to be chapters in that book I never in my wildest dreams thought I would ever have to write. ‘No! that happens to other people, not me!”
The notebook is getting quite full; it is becoming a cesspit of emotion, unanswered questions and some parts, violent outbursts of anger that I don’t want my children to hear. It has inky tearstains, shouty capitals, bits crossed out & bits added with little arrows, diagrams, purple, red and black pen, lists, dividers… you get the general idea! It has evolved into becoming a good listener because I can write whatever I want, in no particular order, without grammar, punctuation or spell checking. And the best bit, nobody else can read, or understands it but me!
I think it will be a very long time, if ever, before I gather all the ‘stuff’ in that journal and put into some sort of sensible form, and tell my own real story. I would need to be in a much more stable place before I could share this part of my life with the rest of the world. Why? Because the ultimate goal would be to provide the reader with a insight into the harsh realities and devastation inflicted on a person, and their family, living with a chronic disease.