I’ve come to another checkpoint, the end of the year always seems to call for a summary and with PN I won’t be summarising any grand bonuses, monumental achievements or any other events that suffice to the amount of days and hours that passed. In fact, the biggest blocks of time go on rest, treatment and wondering if this pain is actually ever going to end.
When I hear ‘festive cheer’ I can’t help but rhyme it with ‘Festive fear’, are you terrified at this time of year? Festivities call us to get out of the safe daily zone, step into marathon entertaining, baking, wrapping, socialising, a time to move away from our therapists and their treatments (Lord knows they need a break!) and jump! It’s impossible not to wonder, how will this end for my pelvis?
I know that sounds negative for someone that managed to finally get back into the studio, made Christmas wrapping (above), who contributed to her design company, who directed Art and Chronic Pain – A Self Portrait, and who wound up planning a documentary to create awareness for the very issue that holds her up day in day out, but, I’m slowly realising although I progress, PN is consuming my life more and more (and Theo’s!). PN has infested into my creativity, it’s become a monster outside my body as well. A monster now guiding me to forget my privacy, suck up the imposition and ego, and play a lead role in the name of PN awareness. How on earth did it come to this? And where on earth is it going? (You won’t believe what’s next!!) PN is truly fixated on me, in me, around me, it’s becoming the PN never-ending story. I can’t help but wonder at times, at what the point did this become my job?
(Glad I got that out. Well someone had to do it for us… I hear you, I hit your PN spot.. I know I certainly hit mine…)
My answers always surface; I am an artist, PN will never take that away, I communicate with pictures and visions first, before I find the words, and I use that gift to communicate PN for my own cathartic sake and to help others as well. I’m going to call this medico-artistic communication. I’m using PN’s pain and transforming it into advocacy, and apparently stats and your gorgeous messages tell me, I’m not so bad at it!
So… if what I managed this year was difficult then all I need to do is to simplify it for 2014. And if I take into account the pain management skills Theo and I acquired, the next year will be a good one. I’ve not gone backwards and the least I can expect is that I will recover from the Festive cheer (and fear!) and I will hold fort at: one Artist’s book, one semifinalist portrait, participating in a documentary, some part-time work, a little more local socialising, and, a bundle of creative tasks that remain on my to do list.
I just cannot argue with that.
Oh Sweetheart! It’s because of who YOU are!
The Spirits looked down to find a person who could be a ‘poster person for Pudendal Neuralgia. (They were so excited that doctors had finally recognized PN!) there were certain assets to be filled though. That person had to be Compassionate (tick!); Empathetic (tick!); Excellent people skills (tick!); Someone who could express themselves easily (tick!); Mature and Responsible (tick!); Self Assured with good Language Skills (tick!);
After looking at all of us who suffer this horrid monster, YOU were the only one who could fulfill all the requirements for someone to represent the masses!
I am honored to gave you as our spokesperson. It is a fantastic job you have undertaken! The website is recognized internationally! No small feat that I am thankful for everyday! You managed to put together your book in between pain flares! Your artistic skills are able to illustrate to all! You are at ease with the public and the camera!
And, I believe, you are a strong person Soula! Strong enough and armed with the knowledge to know when to have a break or know your limits! I see you as our Team Leader. I hope you know that we are all limited by this monster, but will offer any help we can manage even if it may only be in support. Xoxo’s
Brenda you’ve refueled me!! That is a divine message, most encouraging and the biggest compliment. You give me so much strength love and help me carry on and allow the monster to lead the way. I’m sure together, in the end, we will prevail and at the very least we’ll shrink that PN monster. Thank you so so much for that beautiful comment. xxxxxxx