Meet the wonderful...Pandora Poikilos
Welcome to my blog on unsung, inspirational women, the kind hardly anyone knows about, the ordinary you's and me's who live up the street or around the corner but who live beautiful, extraordinary lives and give so much to others.
Pandora Poikilos is one of them who exists for some of us only in virtual reality. She is one of Blogland’s leading lights. With more than 8,000 followers of her Blog Peace from Pieces, and a book ranked among the top bestsellers on Smashwords, she has made the sometimes inscrutable world of technology her new home.
In 2003, at the age of only twenty five years, Pandora was diagnosed with Intracrannial Hypertension. Her symptoms began with headaches and double vision. She went for a CT scan followed by an MRI. Then she saw the neurologist, and in a single moment, the man in the white suit gently pointed out that from then on, Pandora would not be in control of everything.
Intracranial Hypertension is a neurological disorder, which literally means that the pressure of cerebrospinal fluid (CSF) within the skull is too high. “Intracranial” means “within the skull.” “Hypertension” means “high fluid pressure.” Main symptoms are headache, nausea and vomiting, double vision and other symptoms. If untreated, it may lead to swelling of the optic disc in the eye, which can progress to vision loss. There is no known cause. There is no cure.
Most days, Pandora feels double her age. She has a VP Shunt in her head and a tube that runs from her brain to her body. She feels scared. She feels cursed. And she feels abnormal. On some days, she is like a raging bull, tearing around doing as much as she can. Others see such days as ‘good.’ They call these supernatural bursts of activity, ‘determination.’ It probably helps them feel easier; reassured and less threatened by the reality of Pandora’s all-consuming, life-altering disease. However, Pandora sees her actions as the mask she wears. Compulsively, she does as much as she can before another bad day catches up with her, and she won’t be able to do anything other than lie in bed and wish away such moments. She feels helpless. She cannot see what eats away at her. But she knows it is there, everyday – an invisible force tearing her to shreds from the inside out. Blackness envelops her, as her eyes fail. She needs help with simple everyday tasks. The pain you and I feel should we jam our hand in a door is nothing to the pain Pandora endures when she undergoes brain surgery. But the VP Shunt is a choice between sight and sanity or ongoing crippling symptoms driving her mad.
Pandora has been together with her partner for more than two years. They met two months before she was due to go for her VP shunt surgery. They clicked instantly. Pandora repeats how brain surgery helps you put your priorities in order. Some days are really bad. And it is painful when Pandora’s partner cannot fully understand what she is going through. But they take things one day at a time. “Life's too short to sweat the small stuff,” she says.
Though Pandora lives in London, she has moved countries several times to reach doctors who were able to treat the condition. After the surgery last year, symptoms vastly improved. She no longer needs lumbar punctures (painful enough on their own) or daily medication. She only needs regular checkups for the shunt and her eyesight.
I asked Pandora what writing means to her. It means many things: acceptance, love, faith, hope, freedom, and peace. These are all themes she has touched on and about which she has written. But if she had to choose one word to complete the sentence, ‘Writing is…’ she would say this: "healing". When she writes, she is no longer the frail, inept woman battling an incurable neurological disorder. She can be anything she sets her mind to be…without limitations. She can choose to heal past hurts. She can sketch her future and show the people closest how much they mean to her.
Pandora had been going through a particularly rough patch with medical and personal issues when a close friend suggested that she should pick up a pen and write to heal herself; hence the name of her blog: Peace from Pieces.
“Most of all,” says Pandora, “I hope I can offer ‘healing’ to someone else who may need it, so they too can chin up and keep moving forward. Lord knows I'm literally a few brain nerves short since my diagnosis and shunt surgery, but for everything that has been taken from me, I still have the best thing of all, my words…”
Pandora’s favourite quote and one that she lives by is something she wrote: "The next time someone tells you 'the absence of expectations is the absence of disappointment,' do not listen. Have expectations. Keep them great. It'll be a very bumpy ride. You'll even get bruised, sometimes very badly. Sometimes, you'll come to an abrupt halt or even fall off your ride. But you'll grow. And if you do not grow, you do not live."
I identify strongly with Pandora, and am grateful to her for being the first inspirational woman to feature on my new blog. I too suffer from a debilitating disease. Writing is my release, my escape into the hauntingly beautiful world of the imagination. What a gift it is, this imagination – the means by which we might participate in the beauty of the day!
Thank You Pandora for being such an inspiration, one of the unsung, unnoticed, special women who is truly deserving of exaltation!
Pandora Poikilos - http://pandorapoikilos.com/ |
Facebook Page https://www.facebook.com/peacefrompieces |
Twitter http://twitter.com/#!/PandoraPoikilos |
Amazon http://www.amazon.com/Excuse-Brains-Have-Stepped-Out/dp/0983197873 *Support the cause - $1 from every paperback copy of Excuse Me, My Brains Have Stepped Out purchased on Amazon.com will go towards the National Organisation of Rare Disorders.