You may as well call me Cinderella.
I take at least 10 pills each day, just to function. I know this is not unique to PD, but at 118lbs, sans sleep, it takes a toll. Parkinson’s medications wear off at various points in a 24 hour cycle, but no one knows exactly when.
Forgive my haste, but I only have so much time. Time to feel sorta kinda normal before my body locks up, again. Time outside my room. Time to live without chronic and often overwhelming pain.
I don’t bother trying to find a glass slipper, because I can’t afford to believe in fairytales. I don’t tell you this or to get reassurance or validation. I’m disillusioned enough to chuckle at cheerful memes, and a few horrible people I’ve known who hastag “blessed” or “love” without a trace of irony.
Per usual, this is no SOS. I’m sharing my personal experience of a progressive brain disease primarily to spread awareness, and because the whole world seems focused only on survival of the fittest... and money.
The magic of movement (and focus, and energy) disappears without warning, so when I’m finally “on”, and the pain is at a minimum, of course I want to dance all night. Uno mas! If I go home first, the apocalypse might be upon us.
One last dance, please, before the familiar struggle starts all over again. I arrive at your door exhausted, and desperate for shelter. First you called me crazy, addict, and various false projections that you, along with your uninformed friends without a degree in neurology, use to define me. People have done and said some pretty ridiculous things re: PD, but it’s only made me stronger and clearer about who and what is worth my time.
You finally let me in, knowing this menance within my substantia nigra will likely hurt you too. When you took time to understand, you made a loyal friend for life. I would do anything for solid friends who stood by me through challenging times- you helped me forget the cowards who kicked me when I was down.
This is me, pretending to be brave- not because this is easy. I’ve made the choice to endure and thrive with as much grace as possible. Our children need to see their Mom rising stronger after each fall.
Thank you to the family, caregivers, friends, and partners who stick around. You have endured ugly parts of an unexpected and most inconvenient diagnosis- one that tortures millions- yet you’ve proven wise enough to distinguish the victim from the disease.
Not everyone has the capacity to witness such an unpredictable new reality. It’s most unsettling to those who rely upon strict and tight schedules. The chaos of disease must terrify them.
“Haha! Bless your soul! Do you really think you’re in control?”
In a few situations, I was disturbed by the behavior of people I once trusted. It hurt to be not only misunderstood, but attacked and humiliated for something beyond my control. With very few exceptions I have been overwhelmed by kind and incrediby cool people who just get it, but the cognative dissonance of supposed comrades was just too ridiculous.
A few clicks on google would have led the confused ones to various blogs and sites containing undeniable medical and scientific facts. It’s a lot to ask. We’re all impossibly busy! Of course I don’t expect anyone to bother with checking a blog, but I promise to surprise readers with the release of new work.
I am doing my best to tame this beast with the resources available in each moment. Your awareness of the brutality of this condition and your acceptance are gifts! I cherish these friendships.
Life IS beautiful, but sometimes it’s too intense, too much at once.