Profoundly grateful for the support and kindness shown under the post about my kids. I rarely include home scenarios or get personal out of respect for their privacy, but this felt like a moment where exposure might promote understanding.
I’ll be writing more about that thread, (including your comments) because it showed who YOU are. I feel grateful to know each of you in any capacity.
We all have times of transition that become overwhelming. I am not always skillful with challenges, but I am direct and honest and able to find the humor pretty quickly.
With my brain condition, I’ve had to drop harsher critics and those who refuse to see that our situation is not the same as other families. Those who deny themselves real understanding of Parkinson’s but give it lip service...yeah, yeah you “knew a guy” or “your neighbor or your Uncle...” so you’ve got it all figured out and “why don’t I just do this or that and heal myself!”
The former acquaintances and friends who fail to discern the difference between a parkie brain and a relatively healthy brain have said and done things that made it so much worse. With friends like them, who needs enemies? It drained my time and energy, always trying to explain.
Yet here we all are! Welcome to messy humanity and this sometimes ridiculous but miraculous life!
I don’t have time to get beat up by casual observers when PD delivers enough of a beating... every day and every night.
Of course folks don’t have to read what I post, or my blog, or short stories, or any other writing, but the distinction is that my friends know the difference between a symptom of an involuntary neurologic condition or side effects of a medication and who I really am. Those who refuse this ultimate reality fall away. They made it into something it was not, got fed up (fair enough, it does suck), or they got scared.
Parkinson’s IS scary, but I’m still here doing my best with resources available, and living a vibrant active creative life, so I might help others do the same. I stick my neck out and go to bat FOR a community and cause bigger than myself.
It’s impossible for me to be “normal” and highly functioning in all ways. I haven’t followed dominant culture to begin with- so if that’s what you seek, you’ll be frustrated. Like anyone faced with challenges too big for their capacity, I never imagined I’d have to make some of these choices.
How do any of us know what we’d do, until we are in that situation ourselves?
For those who have seen the changes and still accepted me, and for new friends who have only known me as a PwP: I cherish our connection! Thank you.
This is not for the faint of heart. If you are in my circles, you have courage AND compassion. The jagged parts of life are made smoother, and even survivable, because of you.