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.
3 thoughts on “Your Mileage May Vary…”
Thanks for being vulnerable and sharing your insight.
Great post, Corey, as always. All that any of us has is this moment, but we forget that and assume we have more. Making plans gives us the feeling of safety, I think – or maybe it’s just me. As I have gotten older (just turned 62 🙀), I live time more consciously and try to enjoy it an hour at a time. It makes me feel like I have a lot more time left to enjoy.
~ Wendy H.
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