Parkinson’s is a disease of loss. At first, you only lose the small things. Then you lose a few more until it eventually becomes quite a lot. You can see this coming, even if you don’t exactly know what you’re going to lose and when. The things that you lose – writing with a pen, walking effortlessly or even just your energy – these are things that belong to you. They can also be specific skills that help you to belong… to another person, a sports team, an organisation or company. Parkinson’s might not change who you are, but it definitely changes what you’re capable of, your skills. And, consequently, to whom or what you belong.
Your list of the Impossible
Heard it again the other day: “you first have to accept that you’ve got Parkinson’s. Only then can you actually move on”. Right. I take it you have to accept this up front? Way before parkinson’s progresses, way before your small losses become an avalanche. So let’s assume, you finally manage to ‘accept’ your future losses and on Day 100, Day 500, or day whatever into dx. Let’s call it Day X for simplicity’s sake. On Day X you’d supposedly finally accept that you’re going to lose an increasing number of things with each new day. Often at a painfully slow rate. That’s another thing: your loss doesn’t become an avalanche in one fell swoop, but rather in excruciatingly slow motion. The person that came up with the saying: ‘He who fears he shall suffer, already suffers what he fears’ most definitely had Parkinson’s. But anyway, it’s Day X and you’ve finally concluded: you have to accept that you’re going to lose a lot. So much, in fact, that you’ve compiled your own list. A list of the Impossible.
Your list of the Impossible grows
When you visualise this, you picture a sort of field. At one end is all that you have and might even be able to keep and at the other, all that’s become Impossible. Impossible is no fun. I don’t even like the word … not the letters, the composition, nada.
That Day X, on which you supposedly accepted that you’re going to lose everything, is already far behind you. So, there you are. On life’s field. At one end is all that you have and at the other, all that you’ve lost. For the first time in your life you actually want to rebel. You want to cling on to everything, accomplish everything and receive all that was intended for you. Especially those things that connect you to others. There’s no Day X for me. Because if I were to accept that I’m going to lose everything, then I would also lose my longing for what’s Impossible or for what will ultimately become Impossible.
Your list of the Impossible is your list of Longing
You have to continue longing for the Impossible. Defiantly maintain a list of longing for what you’ve lost. Skills, people or, in our case, a baby daughter. Most of what appears on the list of the Impossible belongs in your heart. It’s your heart that keeps you alive, the longing for the Impossible keeps you alive. Your brain is thinking its socks off to help you reach for the Impossible, even the Impossible that is out of reach. After all, there might be just the tiniest chance of regaining a little of what you lost. Tell me, where would we be without longing?
Tell me, what is your brain supposed to be doing all day when there’s no such thing as longing? Your brain was created to think, to direct, whether or not you’ve got parkinson’s. Come to think of it: even more so when you’ve got parkinson’s.
Tell me, what is your heart supposed to be doing all day when there’s no such thing as loving life and longing, whether or not you’ve got parkinson’s. Come to think of it: even more so when you’ve got parkinson’s.
Parkinson’s is a disease of losses, wouldn’t I know it. But hey, deep down we all know there’s one thing that not even parkinson’s can take away from you.