People sometimes ask if I miss my life before Parkinson’s.

That’s a complicated question when you’ve lived with this disease for decades.

Of course there are things I miss. But lately I’ve realized it isn’t some younger, healthier version of myself I’m nostalgic for.

I miss automatic.

I miss standing up without running diagnostics first.

I miss leaving the house without thinking about medication, energy, timing, bathrooms, walking, fatigue and whether my body has secretly scheduled a neurological coup for 2:30.

I miss being tired and just being tired. Not wondering whether it’s Parkinson’s fatigue, medication, sleep, apathy, blood pressure, dopamine or the fact that I stayed up until midnight watching something I didn’t even like.

I miss forgetting somebody’s name and simply thinking: Shit. I forgot their name.

Now there’s an investigation.

Is that normal aging? Parkinson’s? Medication? Cognition? Did I ever know this person? Should I be concerned?

By the time I finish diagnosing why I forgot the name, I’ve forgotten whose fucking name we were talking about.

That’s the part of chronic illness people rarely see. It isn’t only the symptoms. It’s the surveillance.

You become the full time security department for your own body.

Every twitch gets reviewed. Every stumble gets investigated. Every weird sensation gets entered into evidence.

Your body does something strange at 10:14 in the morning and suddenly you’re conducting a neurological congressional hearing before lunch.

Sometimes nothing is actually wrong. But once your body has surprised you enough times, you stop completely trusting surprises.

That changes you.

I don’t think the answer is pretending you can get that innocence back. I can’t unknow what I know about Parkinson’s.

And frankly, after all these years, I know enough obscure neurological shit to make Thanksgiving dinner deeply uncomfortable.

The challenge is learning when to pay attention and when to tell Parkinson’s: Not everything gets a fucking committee meeting.

Sometimes a bad night’s sleep is a bad night’s sleep. Sometimes forgetting why you walked into the kitchen means you’re a human being who walked into the kitchen and forgot why. Sometimes your knee hurts because you’re getting older. Welcome to the club.

Parkinson’s deserves attention. It does not deserve jurisdiction over every sensation, thought and shitty Tuesday.

TODAY’S DEFIANT TRUTH:

A chronic illness can make you an expert at watching your life. Don’t become so good at monitoring it that you forget to actually live it.

Pay attention when you need to. Then occasionally tell the neurological security department to take the afternoon off.

There’s still a life happening outside the surveillance room.

Live Defiantly. — Richie Pikunis