We don’t usually love media, but a little attention after some lengthy hibernation from work was bound to be very valuable for our (Theo’s and my) 12 or so year old business, Origin of Image. The lovely Sunday Style (Herald Sun) offered an interview in their ‘My_Space’ feature… hmmm, quite funny for us as there’s nothing ‘my’ about ‘our’ life. We share work, living, we even share Pudendal Neuralgia (PN).

However this media attention and the snap of me in Sunday’s weekend paper had me staring at my portrait (thank you Marija Ivkovic) with curiousity at that captured second of my able life. I looked incredibly independent, active, like I was working full-time and like the issue I confessed to was clearly easy to live with.

We are all judged on our facade… and although it was stated in the article that I have PN, I often wonder: can it (or any other invisible issue) ever be understood by my friends, family or community at a glance? The answer is obviously ‘no’. I myself battle to understand this conflicting issue with its high sensitivity, on/off maddening, screaming and confusing signals and failing functions, and that’s no surprise because even I can’t see it! Theo puts it well, “I can’t understand Pudendal Neuralgia but I believe Soula”.

For the split second of the portrait though, (goodness, even I keep looking at it quite enjoying the scene), I’m sitting on my non sore side and my wrist is about to snap because all my weight is pressing on it. Regardless, I allow myself to dream that everything is exactly as it seems in the picture… 24/7.¬† I get to dream for just another second before my pelvis reminds me that the hard working, happy snap is instead made up of Theo’s daily help, my limited activity, the Peripheral Stimulation device, nerve blocks, medication, remedial massage, traditional Chinese herbs and now, an adjusted home to suit… (I won’t go into the ‘I don’t, I can’t, I avoid, I won’t’ activities).

(Let me clear my throat)… And now that I’ve posted my whinge, I’ll go back and have another look at my happy portrait snap of ‘our space’. This time I’m grateful that I even have an able facade, one that others can think is O.K. and oozes full time work… even if it takes the both of us and an invisible premium pain package