It’s been almost two weeks since the calendar flipped to this latest year; two weeks filled with the continuing firehose of bad news and climatic craziness.

I am not sure how much of my ongoing fatigue is induced by Parkinson’s and how much is just exhaustion from all that is going on in the world. How does one begin to tease these things apart?

So I try to be more conscious about limiting my news, but unfortunately, some of the symptoms of Parkinson’s include, fatigue, apathy and depression. There are more days than I want to admit, when it feels like I need superhuman willpower to to roust myself from my chair. It’s bad enough that I can’t find the energy to move but it is compounded by my mother’s voice as she admonishes me not to have a ‘pity party’.

Mom died at 63. I was 28. And now I’m 64. So although she has been dead longer than she was alive in my life, her voice has never diminished. I assure you that this particular maternal caution is not at all helpful. But hey…it is said that awareness is the first step and I am ever so aware that these old default recordings are not the truth.

I am not pitying myself. All I have to do is look around and know that I have been pretty lucky and that everyone eventually has to deal with some less than perfect health or circumstances. I honestly have never gone to the ‘why me’ state of mind.

More correctly, I think the question should be, “Why not me?”.  In fact,  “Why not anyone?”.  I think it’s more remarkable that, for the most part, our incredibly complicated bodies work at all…especially when you think of how many things can go wrong.

It is through this series of self-examination questions that I can refute my mother and figure out what’s happening. Examined in this way, I can determine that, a) I am not having a pity party, thank you very much, and b) there is a scientific and physiological explanation for my low energy, because here’s the thing…Parkinson’s is a cruel and (mostly) an invisible disease.

Because of this invisibility, more than one person has kindly told me I look great. Hale and hearty…indeed.

I have made the same based-on-appearances mistake at the one and only Parkinson’s support group meeting I went to. The woman seated next to me looked so healthy. I was feeling encouraged to see someone who had already shared that she’d had Parkinson’s for more than a decade.  She was obviously much older than me, so hey, I said to myself, she looks amazing so maybe this whole Parkinson’s thing won’t be so bad…

And then it was her turn to speak and she very simply said, “It’s been hell. Unrelenting hell.”

Still, it serves no one, if I take someone’s kind comment and insist on correcting them with how crappy I feel. Not only does it make the well-intentioned person feel awful, but by insisting on how shitty I actually feel, my words reinforce and remind me to focus on the worst. And quite honestly, I don’t want to go on with a litany of symptoms.

Besides, sometimes I actually do feel pretty good.

So why am I telling you all this? Because I believe, that, like me, you want to say/do the right thing and when you tell me I don’t look sick, I know you mean well, but you’re diminishing my experience. Parkinson’s is a shitty game of whack-a-mole. What I’m dealing with changes constantly and is not necessarily visible.

I might be walking with you and look like I’m doing great, but most of the time I am conscious of every bloody step. I am trying to prevent my ankle from turning in, my hip and thigh muscles are screaming and more often than not, I am fighting a feeling of nausea, a headache or bone-crushing fatigue.

I am writing this in the hopes that enough people will read it and I won’t have to have this conversation directly. I don’t want to be Parkinson’s poster child, but similar to my aforementioned self-examination concerning my mother’s erroneous voice, consider this as my public service announcement offering an opportunity to learn some new language.

Please know this; I am not trying to make people self-conscious but perhaps just a little more conscious.

Because words matter.

Besides, this kind of language awareness works for more things than my particular disease. If you’re interested in learning more, please check out this link.

Thank you for your understanding.