Yes, I’ve found another medium to express my pain and you can own your own copy of it!
I didn’t like the idea of creating a long description of my living with pain or turning journal entries into a pain story – I’ve got this website for that!
And besides, first and foremost, before the person in pain, I am an artist… so my book had to be creative with few words.
At just 32 pages I believe it’s a complete story. It doesn’t hold the solution to chronic pain but the book is aimed at helping you to explain it to someone else.
Art & Chronic Pain – A Self Portrait was created as an expression of my experience up until the time of my diagnosis – roughly 4.5 years. It was also made for the purpose of being a companion to other people living with chronic pain. I want the reader to feel empathy in a world where no one seems to understand, and I wanted to ease pain for the reader as they looked through it.
My marionette, Ms Soula, has been a great aid in helping me communicate my frustration with this invisible pain. I’m thrilled that the portrait I painted of her was selected as a semi finalist for the National Doug Moran Portrait Painting prize. It made me happy that Ms Soula, was beginning to communicate my message of invisible illness.
In the midst of being creative with the marionette (refer to full post) I have found more ways to express my pain some of which form this book.
I use drawings, sentences and phrases from my website, guided by your comments and emails to me, and used Ms Soula’s strings to document my pain journey’s ups, downs… and knots. I wanted this to be a special publication and with Theo’s help, we made it exactly that. There is a dust jacket with real strings attached, which Theo attaches one by one (thanks Theo).
There are only 500 copies produced and I’m happy to report that the book is almost sold out. With this exciting achievement, I have now decided to offer a downloadable version.
Purchase Art & Chronic Pain – A Self Portrait via PayPal below.
Thank you!
The price of my book is $29 (plus postage*) and it’s also available at Queenscliff Gallery. Order online by selecting an option below and hitting the ‘buy now’ button (credit card orders can be processed through PayPal even for those who don’t have an account).
Cost: $29 (view postage costs in the dropdown)
Outside dust jacket.Pictured below: two double-page spread examples.
Size closed: 195mm (W) x 255mm (H)
Pages: 32 plus dust jacket with attached strings
*Postage costs pay for waterproof and protective package.
100% of donations go to myhealthstory.com.au development.
For 13 yrs I’ve battled with PN. As a man, I think my journey to diagnosis was much longer than it needed to be because PN is more prevalent in woman. For 12 yrs I laboured under several misdiagnosis and was told my pain was strictly neuropathic and therefore, couldn’t worsen with movement. For all that time I disagreed. 7 yrs ago I had a complete mental breakdown- in addition to the pain and the loss of quality of life, I also doubted my own thoughts and feelings about everything because everyone was telling me that what I felt and thought was wrong. I don’t experience any bowel problems or sexual dysfunction but do have pain; not only when sitting, but all the time, with each footstep I take, and that pain doesn’t disappear when I’m lying down or sleeping. I require a cane to walk short distances and a wheelchair for any other mobility. I have developed additional pain conditions as a result of the many years of poor treatment for my primary condition. My understanding is that after almost a decade and a half of mismanagement, things will not improve for me and this has complicated my journey towards living fully. As the condition is regarded as treatable and reversible, I cannot qualify for disability support services in Australia, my home, yet every year my pain worsens despite extensive therapies and intense medications, making me less able to do anything much at all. I prioritise activity for paid work in order to try and not lose my income as I’m single and without family. This prioritisation means that every other aspect of my life has slowly disappeared over 13 years and soon, I will likely lose my job as well. I’m sorry to sound depressing but I hope my voice can help people seek treatment early on so that they don’t end up in a situation like mine and to be aware of how PN can also impact men and affect all mobility- not just sitting or some forms of exercise. 13 yrs ago I wish I knew what I knew now but hopefully, somebody else can learn from my experiences and also feel a little less alone.
Where in Australia are you? If in Melbourne (http://www.adeleburgess.com.au/sacral-nerve-stimulation.html has helped many males), online, drsusiegronski.com.au can help with her online courses/consults. Have you been to a pain specialist?
You should never need to apologise. There is nothing you need to apologise for. If anyone/body needs to apologise to many of us, it’s the medical system that has taken so long to understand pelvic pain – longer for men!
Do not give up. This ‘alarm system’ makes us all feel like there is no end. But there is. I do believe it’s just finding what will work for your brain and nervous system.
Thank you for finding the strength to leave the comment and advocate for others.
Soula
Thank you for writing and illustrating your book about PN. I am an artist also and have had PN for over 22 years. I just released my memoir about my struggles with PN while in the Catholic Convent trying to become a Religious Sister. Would you be interested in reading it and then blogging about it or featuring it here on your website? Please let me know. My e-mail address is: marepeluso@gmail.com. Thank you. And God Bless.
I feel so honored to have my poem on this website. I am humbled by the creativity of my fellow pelvic soldiers. I am trying not to use that other “P” word. Lol. Sounds like…The Rain in Spain ..yes, that word which comes to dominate our bodies, minds and spirits. Tell it to PI$$ off! And always always love yourself. Some days it may feel like you cannot or that you are too broken. NO! YOU ARE AMAZING! I pray for each of you beautiful beings. We are so blessed and lucky to have resources and such a competent physician and therapists. I pray for all of those pelvic soldiers who are where I was 3 years ago — living in agony, trying so hard to work and appear happy and fine and not having a clue as to why I was in so much pain “south of the mason dixon line”. I was so scared. I feel for all of those who are currently seeing doctor upon doctor with no answer. Or simply are poor and lack health benefits. Or whose spouses and/or friends do not believe them. We need to raise awareness and lessen the stigma of talking about such intimate pain. I pray for everyone going through the pelvic journey. There is joy to be had no matter what. Laughter through tears and grief releases chemicals that give some relief. I send you all my love and positive energy for continued healing of body and spirit.
My copy of this amazing book arrived in the UK today, 9th December.
I can only say a HUGE thank you to Soula for her immense creativity and vision, to publish such a unique book.
I am overwhelmed.
To hold it, to feel those strings, to read this wonderful work of Art, I felt understood at last.
This is MY story too!
I have been in this dreadful, debilitating pain for 19 years.
In my case it was a violent, traumatic and ultimately unnecessary vaginal hysterectomy that caused my pudendal nerve to be either trapped, damaged or severed.
Little was known about the condition in 1994, and I was dismissed as “cured or f***ing incurable”! That is what my Gynaecologist who performed the hysterectomy said to me.
I was severely depressed, at risk of losing my teaching career, my marriage, my beautiful sons were 4 & 6, and I thought my life was over. Years later I was eventually offered pain management which involved daily exercises on a cycling machine (!), counselling to help with anger towards the Surgeon, and several different medications.
It wasn’t until 2007 that I heard about Pudendal Neuralgia. Because my nerve has been damaged for such a long time, I had little success with Nerve blocks. Various specialists have helped to restore pelvic function. But basically I have been told to learn to live with it.
Reading, savouring Soula’s book was like a ray of sunshine and hope.
It will help me explain to people who really fail to understand why I haven’t “got over it yet!” why my life is the way that it is!
I lost that much loved teaching career 10 years ago. My sons are 23 & 25. My husband is still with me, but finds the burden of being “the bread winner” stressful, whilst I can “take to my bed, and paint”!
I have turned to Art. It helps.
Sometimes I paint my pain. Sometimes I paint my hopes and dreams. Sometimes I just sleep!
Now I know that I am not alone, and Soula, I am SO grateful.
Thank you.
With love, best wishes, and gentle hugs,
Sue Carey xx xx
Cant wait to read it as an artist in chronic pain and dealing with an adversarial system have great respect for your fight anad courage Soula, and to Sue, very lovely and eloquent reply xxx