Your life consists of good and not good. Regardless of whether that’s self-induced or caused by someone or something else. Sometimes it can hover between the two, sort of semi-good. But mostly it’s simply good or not good.
From ‘everything is good’ to ‘everything is most certainly not good’
If you’re diagnosed with Parkinson’s when everything is good, then your entire world collapses. At least, that’s what it feels like. Until you realise that the world simply keeps turning. It might take a while, but there really does come a day when you wake up and think, “Huh? Did we really think that the world would simply stand still? So, who was it that got things going again? Oh well, onwards and upwards! I mean, I might as well carry on if my world refuses to collapse.”
And, with Parkinson’s hanging round your neck, you carry on. Your life is more or less in balance again. Parkinson’s is huge, but not so huge that you can’t see past it from time to time. I often recall what my grandmother said when our daughter died: “You don’t have to get over it. If you can look past it from time to time, then that’s enough.”
Parkinson’s is, at any rate, less huge than death. You might not reach a ripe old age, but you can certainly live with it for a long time. And I now understand what it’s like not to be able to achieve 100%, 90% and sometimes even 50% of what I used to. I know what I miss and what I’m going to miss. I’m not the only one who ‘misses’ by the way. I’m also a wife, mother, friend, sister, colleague. What I miss, they also miss me in.
A good cup and a not good cup
And you live on with Parkinson’s. Everything’s good, so long as your good and not-good-cups are in balance. Your not-good-cup is heavy, but so too is your good-cup. And, if you’re lucky, your good-cup is heavier than your not-good-cup.
Things go wrong when you start to question that balance. “Something bad is about to happen and my not-good-cup will become too heavy.” You’re afraid that something’s going to happen to your husband/child/friend. Because that would be truly terrible, so much more terrible than Parkinson’s.
It’s not Parkinson’s, but fear that’s the worst
It’s not Parkinson’s, but your fear of yet another addition to your not-good-cup that’s the worst. Then your not-good-cup becomes truly ominous. And what that cup doesn’t already contain, you throw in yourself. Such as your worries about money, paying the mortgage, your weight or even your wrinkles. That’s what keeps you awake at night. Not what you’re losing to Parkinson’s, but what you need in order to keep your good and not-good-cups in balance. Your fear, your difficulties, your grief are the true heavyweights in your not-good-cup. Parkinson’s, no matter how miserable, is the least of your problems.
You know yourself what the heavyweights in your good cup are…