The first thing I notice is how strange it all feels. I would say, calmly, “I need to plan for becoming more disabled over time.” But I didn’t know much about what that was going to mean. Remember when you used to be able to play the guitar pretty well? Time went by, you quit playing without really thinking about it, and one day you picked up the guitar and the feeling, the feeling of ease, was gone. Parkinson’s Disease is like that, except with things like walking, or dancing, or writing with a pencil or bending over to put on my shoes. It’s hard to tell whether these are things I can hold onto if I try really hard; whether it’s better to struggle to keep what I can or whether it’s better to surrender to what’s happening right now.
Then there are the non-motor symptoms, that no one told you about: the pain in your legs, the loss of your sense of smell, the inability to sleep. Meditation helps, not much with the symptoms, but quite a bit with the panic.
Then I started noticing that I actually do know what my future is going to look like if I live long enough. I go to the clinic for my regular checkup, and one thing they always ask me to do is cross my arms and stand up from the chair. No problem, right? Eventually I started to think “is this going to be a problem for me?” The answer, of course, is yes.
In all of this, having Parkinson’s Disease is a lot like getting old generally: you have to face up to loss of function, and eventually to your own death. You can delay some of this for a while by taking care of yourself and working hard at it. But eventually you have to let it go. All of the feelings of wanting to put it off, I’m not ready for this, I’m not mature enough, I’m not old enough yet to be dealing with this: none of that matters. Here it is. Right here, right now.
Photo by Bill Alsup