The Things We Keep


This post has the same title as one I wrote in my journal last year right after I learned about the death of one of my best friends.  It had to do at that time with the things we keep in our memories as we are leaving behind grief and sadness.  Apparently I am not quite done with that theme yet.

  I am visiting my parents in my hometown this week, in a little tiny town most people have never heard of.  I’ve spent my life just telling people I am from St. Louis, although it is a 45-minute drive away.  The past few days have been spent driving around to places that look only partly familiar to me.  I grew up here in the 70’s and 80’s when there wasn’t much of anything.  No McDonalds, no Starbucks, lots of not-much.  There is now an overlay of growth over everything.  An area that was once just a huge wooded hill across from the parking lot where I had my summer job before college was flattened and turned into a giant complex of shopping centers, restaurants, and movie theaters.  Each time I come home the familiar edges are erased just a little more, so now thirty years after leaving home the familiar is almost buried.  The playground at my elementary school is gone, replaced with a new kindergarten wing and a few pieces of modern play equipment.  The used bookstore where I rode my bike to get all the Stephen King books my allowance could buy is gone, and the owner has passed away.  The library has moved to a modern building.  I’ve had moments this week of dizziness, just trying to reorient myself when the line between what I recognized and what is new gets blurred.  


My life is feeling a lot like my sense of geography is right now - I can see the old life we had, but PD is slowly, slowly going to overlay it into a life that I didn’t anticipate and don’t recognize.  I planned this trip as a sort of get-away by myself, planned before we got our diagnosis.  Our diagnosis, like everyone’s, was a work in progress.  It’s been stressful for awhile even before we had an official diagnosis in hand, and I wanted a few days for myself.  What I thought was that I could get away from PD and I could let go of it for a bit. 


What I didn’t realize was that you don’t have the PD, the PD has you.  It’s a constant companion.  It’s a little like a burr in your shoe, and you are on a really long hike where you can’t take off your shoe and shake it out.  You can sort of shake your foot and shift it around a bit, but that burr is going to come back under your big toe or the arch of your foot and remind you that it’s still there.  Even when you are not thinking about it, it is busy in the background re-architecting your life and your plans and doing exactly what it wants to do. 

This is all a lot like the changes to my hometown.  Some of the changes are awful, but you weren’t the one who dreamed up destroying a quiet hillside to put in a bunch of stores, and there is nothing you can do now to change the fact that there they sit, ugly and sprawling.  But, on the bright side Mom can get a latte in less than 10 minutes now, or see a movie on the weekend, or have lunch at a nice restaurant.  Although it wasn’t your choice, you make the best of the result.

Our PD journey is going to have to be like that too, we have to keep the best of the things that this hands to us and make a giant vat of lemonade.  It makes you focus like you would not believe - knowing you may have only 10 or 15 really good years left of feeling healthy and productive tends to sharpen your focus.  We’ve re-evaluated graduate school for Mo - does he really want to spend two or three years in school for maybe not so many years of being able to use that degree?  Is there a better way to use the time and energy?  Should we travel now, while we are both feeling good?  I think the lemonade we are drinking right now has a very strong flavor of use your time wisely, which we may not have otherwise had.  There are a lot of really horrible things about all of this, but the little bit of space I have gained this week after stepping back has made me see that there are some things to take away from it.  So, I am choosing to keep the lessons that are being tossed at me like giant softballs.  I’m going to use them and learn from them, and hopefully get stronger and smarter. 

My question and challenge to you this week is, what is one thing YOU can keep and use, out of all the not-so-great things PD has dumped over your head?  Share with everyone in the comments - maybe we can help each other find bright spots we didn’t think about.  The best piece of ALL of this is having a community to share this with and knowing there are other people out there just like us.  That’s something I think I’ll keep too.  Thanks for reading.