I’ve received a couple of comments recently that align with some of my more bothersome 3 AM thoughts, and for better or worse I thought I’d try to work through them here. I don’t know what will happen, so hang on.
I started writing this blog almost ten years ago, in the hope that some of what I say and observe about living with Parkinson’s disease might be useful in some way. I haven’t stuck exclusively to Parkinson’s – I’m an opinionated cuss, and sometimes I go off on rants about things that I’m interested in. By and large, though, there’s a central theme – how is living with an incurable disease that is slowly stealing everything I value affecting my perceptions and impacting the way I live?
Although I occasionally forget it myself, the blog I write and the books I’ve published are not meant to be instructive – they’re simply one person’s chronicle of a lived experience with a progressive, degenerative disease. I’m not trying to tell anyone how they should live, or how they should meet the challenges we all face daily.
At most, I’m just describing what I see, and relating it back to other experiences I’ve had in my life. I talk about what I wish I saw sometimes, too, and there’s more than a little “whistling past the graveyard” here, to jolly myself past the scary parts. It’s a kind of therapy, I suppose.
This is most definitely not an instruction manual for living with PD or anything else, though. It would be arrogant in the extreme for me to presume I know what’s best for you, or even that what I see is what you see. I’m describing my experience, and at times slipping into what I wish were true.
Amy comes with me now when I speak to groups about my life with PD. I don’t drive much anymore, so she takes me places, and she’s been great at critiquing the talks I give. She often tells me, “no one wants to be educated when you talk – they want to hear about you. Talk about your experiences; tell stories, and don’t try to turn them into great truths or object lessons. People get it – you don’t have to get it for them. Show them you; that’s what they want to see.” I try, but I don’t always succeed.
I recently had a comment from someone who said, “You talk a lot about fighting Parkinson’s. We can’t win, so what’s the point in fighting a losing battle? I’m tired, and it only gets worse every day. When is the fight over?”
I can’t answer that for you, or anyone else. I can’t even answer for myself; I just know it’s not today. I have enough on my plate with today; tomorrow is too much to think about. I get scared when I think too far into the future, and I hate feeling scared, so I try not to do it.
I can think about today, though. I can look that far ahead and not be afraid. I can remember that today, I have people who love and care about me, and people I love and care about. Today, there are new things to learn and see. Today, there are laughs to share with Amy. Today there’s the chance we’ll get a phone call about the arrival of our first grandchild.
Tomorrow’s often too much for me, but I can manage today.