Is it a journey or am I spelunking?

 

The term “your Parkinson’s journey” crops up in a lot of the reading I’ve been doing and the podcasts I’ve been listening to as I try to better understand what I am facing. The term felt awkward to me and I couldn’t quite put my finger on why. Then I heard it used to refer to the late Eric Dane’s course of ALS. That is when I realized that journeys are a generally a two-way affair. You go on a journey, only to return home. ALS is not a journey, there is no return to normal, there is only catastrophe ahead. Nor is Parkinson’s a journey. It will progress — slowly, I pray — but it’s not going backwards. So, no, not a journey.

So maybe it’s more like a pilgrimage, I mused. You go somewhere, the going isn’t smooth and along the way you are changed. But even pilgrims go back home, the blisters and galls memories, not ever present realities.

In some ways I feel like a refugee who has been resettled in a place she did not chose, unable to return home. Or like my great-grandmothers who immigrated, never returning home, not even for a short visit. 

Maybe this is an expedition deep inside the earth? I read a piece about veteran coal miners who report that most of the time they crawl through the tunnels they don’t think about the enormous weight that is above them, hundreds, sometimes thousands of feet of rock. But every once in a while, that literally crushing reality asserts itself. Everything could collapse. Most of the time I’m not ruminating on Parkinson’s, but there are moments when I feel the future’s weight, and worry that I might be crushed.

Or maybe it is more like treading water over the Marianas trench, you float, as long as you keep moving just under the surface. It’s exhausting. But there are seven miles of water below you, nothing to stop you from sinking into those depths, so you perforce keep moving.