My body is becoming a cage.
When your timeline has been shortened by a progressive and degenerative brain disease, you might surprise yourself. EVERYTHING changes, and almost EVERYONE chimes in to offer opinion on how to handle such things… from a comfortable distance.
Let’s switch bodies for a few weeks. Let me know how that goes! I’ll learn something about you and you can hang out with Parkinson’s. I’m not unhappy, I’m EXHAUSTED. At present, I also feel kinda judged. Since it’s none of my business what others think of me, I’ll continue to enjoy all the things while I still can. Every dance. Every sandwich. Every simple joy. I’m humbled just to be alive and whenever possible, thriving.
This kind of diagnosis offers the perspective of knowing I’ll lose everything. My voice, normal movement, including the ability to walk and get around, dance, digestion, sleep, and eventually, it will take my breath away too. Damn right I’m going to dance like a maniac and grab that microphone and act a fool sometimes. The more I move and sing the longer I might have the ability to walk and talk for as long as possible. I’d like to hold my grand kids someday.
All these things I used to take for granted.
The fact that I’m being dismantled in ways that you cannot see and fail to comprehend is not an invitation to attack first and ask questions later. I’m not worried, because eventually we all end up in the same place and none of this is under our control.
Mind your own gap. I’ll fly my flappy freak flag in your face if you refuse to acknowledge the reality that others might be having a life experience different than your own. I’m so tired of sanctimonious fools telling everyone else how to be and lobbing bullets from behind false interpretations of scripture- it’s unproductive.
If being basic in normal and believing the illusion of control the best you can do in this life, my sympathies are with you. I’m just trying to make the most of a pretty crappy situation and find dualistic thinking harmful.
I’m not normal or easy to live with, but I also don’t need to travel with a posse nodding blindly in agreement or collect party buddies to escape my loneliness. I have bigger problems that opinions and popularity is nothing more than an albatross hanging from the necks of the most insecure among us.
There’s just not enough time for energy-suckers- not when you get a diagnosis like ours, and not in perfect health.
I’m not afraid. Most of my worst nightmares have already come true. Being somewhat handicapped has carved me into a compassionate type of warrior. To survive this extra hit I had to die and get knocked down, repeatedly.
“And still I rise!”
Confusing kindness with weakness is always a mistake. Most powerful people I have ever been around practice compassion and our deeply kind, in spite of or because of the level of suffering they’ve endured. Those who love enough to make this life easier and not more difficult I am honored to count as my best friends. All this talk-talk-talking can be such a drain.
Now shut up and dance. 😎
With gratitude and love,
Now if you’ll excuse me while I get my bat suit on to save the world!