I am thrilled to be writing again!
Over half a year has passed since I last posted on my website. In that time, I have been doing less cooking, less writing, and no posting—all, mostly on account of the excruciating pain in my left leg, which has yet to resolve, however, in the past month, at last, I have managed to strike a balance between the pain relief medication, the pain level, and the distressing side effects of that medication.
So, with no resolution in sight, and no evident cause for the pain—which, admittedly, feels like a tooth ache throughout my whole body, all day and all night, every single day, sometimes easing into a feeling of walking on broken glass while having a barbed wire pulled through the inside of my foot (and I don’t think that I’m exaggerating much when I say this)—thanks to the pain relief medication, with all its own troubles, I have been somewhat more functional and eating more in the last month.
Amazingly, through all this time, I feel fantastic in my mind and heart. Funny things happen when I choose to feel content, regardless of my physical circumstance.
Being barely functional, I have managed to live some fantastic experiences:
I cycled with the new Mobi shared bike system we now have in Vancouver, as well as cycling with our own bikes a few times with some friends to the lovely cabin on the majestic Galiano Island;
my friends, relatives and eager readers of my story (hand-delivered to them in the Boobs anthology) in my native Europe were such a joy to visit with again, as was seeing the Pet Shop Boys in concert when I returned to Vancouver (they were the first band I ever saw back in high school in Toronto), and, while it was nearly impossible for me to write while standing up, with the pain from my leg screaming in my brain, reading several books—such as Pope Joan—while standing up at night, proved to be a sanity-saving proposition. I have also never taken so many baths, which together with the hot tub and steam room at my local YMCA, were comforting to my body and soul in general.
Temporarily losing my ability to speak more easily during this timeframe has been disappointing; realizing that I am able to choose not to feel frustrated and to feel curious instead has been wonderful. With more sleep again, and while managing the number of sources and intensity of my pain, I feel encouraged in my approach to retraining myself to speak more fluidly–in that, my less dystonic speech is more consistently back again.
Yesterday, on the last day of February, the world observed “Rare Disease Day“—and although I don’t consider dystonia to be a “disease”, presently referring to my diagnosis as a condition, the effects of my condition do cause some “dis-ease”, to me and to those in contact with me. Hence, I do appreciate that one day in the year is designated for raising awareness of less common conditions that many people live with, while some thrive more than others.
a neurological condition that affects movement and speech
it does not affect intellect or ability to enjoy life if given the opportunity”
For the occasion, I am penning a 500 word summary of my dystonia story—a remarkable feat in light of my having embarked on telling my story in over 100,000 word book. The synopsis was inspired by the Chicken Soup for the Soul – Dystonia Edition writing contest by the Dystonia Medical Research Foundation Canada. My good writer friend, Rena Graham, offers her editorial skills to help improve my summary-story, as does another good friend from Belgium..
Today, on the first day of March, I begin my 2017 birthday month celebrations. My day was a lovely balance of working on my income taxes, receiving another installment of my acupuncture trial, and visiting with a lovely friend.
Feeling grateful for all who’ve reached out in mutual support.
– living life alive – Maggie’s Way