I’m lucky. I have a chronic illness.
This is usually never an advantage, but at the moment it is. Let me tell you why.
When you have a chronic and often invisible disease like Parkinson’s, the most difficult adjustment is the lack of control. By this I mean not just that you aren’t in charge, but there’s no obvious explanation or rhyme or reason for many things. If you break a leg, you and everyone who sees you knows it's annoying and there are physical things you’re unable to do right then, until you recover. In the world of PD, however, there are days when I can’t function, and there are no obvious reasons or patterns to it, none that I can discern and none that others can see. This is beyond frustrating, because (a) you don’t want to ask for help, and (b) since it’s hard to see, others won’t offer help. I know, this sounds pretty sucky. Now, are you waiting for the lucky part?
You see, I’ve been living my life in social isolation since my PD diagnosis.
Not total isolation, mind you, but somewhat isolation, and off-and-on isolation, and sometimes isolation without any notice whatsoever. There were days and weeks when I wanted to shop or see friends or travel, but forces beyond my control said No. There were days when I couldn’t connect in person, yet the internet brought me friends from near and far. When I needed to learn new tools to communicate or get my work done, I had to figure them out myself. This, I think, is one of the hardest parts of the coronavirus pandemic: all our tacit expectations of daily life are being upended, not just one time, but on a day-by-day basis, with no clear end in sight.
So much of happiness is dependent on expectations.
I’ve learned how to get a little better at resetting my expectations, and accepting the good whenever and wherever it comes from. (I said I’m lucky, if you remember. I didn’t say I’m an expert.)
It’s not easy now even when you’ve had a lot of practice at it. About six months ago I had brain surgery, and as a result, I was not allowed to travel for 22 weeks. (I think the longest I had gone in 20 years without flying was maybe six weeks.) I had to self-isolate for a while, and it took time before I felt well enough to go out and restart my life. Less than a month ago, I finally traveled again and had started to reinvigorate my business. I even took a vacation. And now all that’s changing. I do know I can get through it. But that confidence doesn’t mean it’s not scary or sad, or that it’s easy to find gratitude or to feel lucky. And that’s okay, too. Letting go of the expectations of how you “should” feel is one of the most important steps.
I posted a list of “Things to Do” on Twitter the other day, but I’m amending it here:
Cut myself some slack.
Cut my spouse some slack.
Be polite at home. We’re going to be stuck with each other for awhile, so don’t save all your good manners for strangers.
Connect, and fight the urge to hibernate. Get offline and call or FaceTime.
Eat and sleep well.
Feel what you feel.
Soldier on. We will get through this.
And if you need a friend, I’m here, as are others. Feel free to find me: on Twitter @mollielombardi or email at firstname.lastname@example.org.
Take care and stay well.