Do you have a tribe? You should. You need one. At least one. Trust me. I have several.
A posse of Parkie pals. A sisterhood of mothers. Friends from all eras of my life. Preschool pals who remember when I sucked my thumb. College chums who remember the passions I explored: friends from my various iterations with whom to reminisce. My husband and kids keep any notion that I have all the answers—or even any of them–in check. I have my work tribes who I am honored to call collaborators.
And there’s my scribe tribe with whom I write about it all.
Tribes, people with whom to commiserate, share information — with whom to celebrate and mourn the chronic condition that is this life. My life. A chronic condition shared is a chronic burden lightened.
I have two answers when people ask how I am: The knee jerk, “I’m fine.” Or if they know me, “Same twitch, different day.”
But I’m not just ‘fine’ and my twitchy symptom is a reminder that my brain cells are in free fall. Everyone knows it’s chronic. Degenerative.
“I’m progressing,” is my new response. For better and worse. All of me is chugging along this mortal coil. My dopamine cells shuffle off too quickly, gravity continues to force my flesh southward – and my mind marches on, learning new tools of the writer’s craft, witnessing Blue Moons and realizing that children say, “I love you” in various ways. I greet the alarm clock with joy. Today I am blessed. To rise. To learn. To embrace tribes old and new.
My tribes and I hope for and, on good days, dare to believe that there will be a cure. It’d be great to be part of a tribe of survivors, those who look at their ailment(s) in the rearview mirror.
For now, though, I’m chronic. I’m laconic… well, after a gin and tonic. I’m sardonic. Sleep is neuroprotective, regenerative. My iteration of PD leaves me sleepless. Ironic.
I took a boxing class because it’s supposed to be good for Parkinson’s. I injured my knee. Comic.
I iced it. Took another boxing class — they’re a great workout. I walked and iced; biked and iced. I iced and iced. The pain in my knee sent me to a doctor (I’m not moronic.)
Who ordered an MRI. The polite technician walked me to the whirring machine. After the test, he asked if he could help me off the table. A couple days later, my doctor’s office called to explain I had a lateral tear in my meniscus. And they referred me to a surgeon who fixes such ailments.
I finally have a malady that can be fixed! “That’s what we do,” said the affable and highly regarded surgeon when I met him the following week. I have a fixer who will fix a fixable pain. I am fixable! Well, at least one joint is.
And now I have another tribe – those who’ve had successful meniscus repair. Those of us who were fixed by orthoscopic, out-patient surgery. My knee pain is part of my past.
I remain flawed. Chronically so. Just ask my friends and family. And my neurologist. But modern medicine has crossed one ill off my list; it has put me in a tribe of purgatory between fixable and chronic. For now.
Tomorrow is another day. Another chance to look through Pandora’s Box – and find that sweet sparkle at the bottom of it all.
I have a tribe of hope. You’re welcome to join anytime.