The Woman Who Cried “Fine!”
Depending on its use as a verb, adverb, or adjective, the word “fine” can mean anything from superb, to top quality to satisfactory to precise and even to delicate. Merriam-Webster lists its synonyms also, which include acceptable, decent, middling, passable, and serviceable. When I look at the range of these words, there seems to be a huge gap between top quality and serviceable. But that’s why “fine” is such a handy word. Most of us are polite people, who take a moment to greet people they know when they cross paths, and say things like, “Hi! How are you?” The greeter doesn’t really want a true answer, and the responder doesn’t really want to give one either. So we say, “Fine!” and then move along. And when we get home, we can tell our spouses, “I saw Joe today. He said he was doing fine.” This allows us to walk away honestly thinking that we’ve satisfied the social norm without really having to share the best and worst of what’s going on with us. “Fine” covers a multitude of sins.
Almost a year ago I wrote a blog post about being fine, and mentioned a ridiculous statement I make all the time, which became the title of the post: “I’m totally fine. I have Parkinson’s.” It’s absolutely true yet absolutely stupid. I am fine. I am. I have a warm, dry, welcoming place to live, I have access to good food and nutrition. I have such excellent access to clean, drinkable water that I bathe in it every day. I have good doctors and good insurance. I have a loving husband, family, friends, and work that I enjoy which is valued enough by society so that I can earn money to support myself and also enjoy leisure time. I am fine.
But I’m also not fine.
You might think that nearly six years after my diagnosis I would be used to this by now, but I don’t think you ever really get over the “magical thinking” that comes with the diagnosis of a devastating, chronic illness. I’m going to be fine. If I tell myself and everyone else that I’m fine, I’ll be fine. But there’s a huge gap in the reality of being, for example, on the one hand superb, and on the other hand middling. A gap that telling yourself and others “it’s fine” cannot bridge. I always mean it when I tell people I’m fine, and when I tell people I feel good. I’ve never been one for pity, so even before PD I was always fine. And I was. As I often am now. But I also need to acknowledge and give myself permission to say when I have moments that are not fine.
While I was traveling last week I was bragging to everyone about how great I’ve been feeling with my new meds, and how I felt so good that they wouldn’t recognize me. And then when I got to my meetings I started having a bizarre drug interaction that resulted from an increase in dosage for one of my meds. I had just begun taking the new, larger dose of this medication before I left for my trip, and because it was a drug I had been on for a while, I didn’t think to even worry about any difficulty or side effect adjusting to the new dosage. And yet 48 hours later I’m in a slightly manic state, sweating, swaying, unable to sit still, unable to eat because I’d nearly bitten through my tongue, and nauseous to boot, because I was still taking meds on a now-empty stomach.
Needless to say, it was not my shining hour. And certainly not the “new me” who was the “totally fine” person I’d hoped to show off.
This shit gets real, and it’s not a matter of willpower or self-care or anything else you did. It’s just real, and it’s Parkinson’s and you do everything you can to help fight it, but some days, it’s just not fine.
But, I’m learning, that’s just how this disease goes; you can’t fool it by telling it you’re fine. There will be times–lots of times–when you do feel fine, so enjoy them. But know that you won’t always be fine. And it’s not because you did something wrong, or didn’t do something right. Sometimes it’s just not fine.
Occasionally I wonder if people who know me, but don’t really know me, who see me at meetings and shows and conferences, ever think of me as the woman who cried “Fine.” Do they think, “Yeah, she says she’s fine…but is she really?” The answer, unfortunately, is I don’t really know, from minute to minute, from day to day. When I say I’m fine I usually mean it. At that moment I probably am fine. The next moment I may not be. And that’s okay too. I don’t have to be “fine” all the time to be useful or productive. And the less stress I put on myself by insisting that I’m fine, the more fine I will likely be. But being “fine” is a hard habit to break. So I continue to try to live authentically, and try to learn to be authentically not fine. It’s okay to be where I am. If I can manage to learn that, everything else will be fine.