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The Off Times

The Off Times

If you see PwP’s (People with Parkinson’s) posting pictures of working out or going on about their glorious moments of crossing finish lines or other proud moments, it’s not what you may think.

To the inexperienced or unobservant “advocacy” may appear attention-seeking or self-involved- even narcissistic. People with a lot of ego tend to get involved in and upset with how others are choosing to express this situation. The “situation” is a moving target that not rocket science but will eventually include brain surgery (DBS). This is unfamiliar territory and almost impossible to describe… but for informational purposes, I’m willing to try. Just consider discarding the “normal” template you use to understand where someone is coming from.

Expecting anyone who has been blindsided with a progressive degenerative incurable disease to carry on as if nothing has changed is unrealistic. That would be akin to expecting a person with Alzheimer’s or to recall details in the immediate. Though we each have our specific challenges, Parkinsons’s is a consistent avalanche that sometimes moves uphill, or sideways. There is no escape.

This does not absolve us from the regular responsibilities of life, it’s just that we are not living the same way we did prior to dx. Everything changes- from friend groups, to lifestyle, to our philosophy of what it means to be human.

Imagine setting a gorgeous candlelit table, With your finest crystal and ambiance in spades. All your favorite friends and family are there enjoying a perfect meal. The music and vibe is just right. Without warning, an unexpected guest enters to shake the tablecloth out, and as the wine and glassware crashes and shatters, the party is not the same. Some of your people stay to help you clean up even though that rude guest stuck around to cause more trouble.

Whether it was a party or a struggle, some of them could still distinguish and appreciate you (the person) from this increasingly hellish scene (the disease) that you did not ask for.

These are your friends. Now you know.

Many of us post these pictures and videos AS A REMINDER, to ourselves and to our community that we can get through the worst of this by knowing impermanence. Every day there is some kind of challenge and we’ve all been in that dark isolated place, where we don’t think we can do this anymore. Don’t believe that story!

By its nature chronic pain is distracting and we tend to become hyper-focused on our health. That does not mean that we are self-absorbed, but that we’re fighting invisible battles and enduring extra challenges that cannot be easily seen or understood. There is little logic to the off times in Parkinson’s- and this can be difficult for partners and intimates who might be insecure or confuse the disease with their person.

If you have Parkinson’s, please hear this:
PARKINSON’S DOES NOT DEFINE US. People may not realize in your fluid moments that they are looking at a small miracle.

The management of chronic disease demands hyper-vigilance and an unbreakable spirit. Though we have been humbled by the unpredictability of our condition, PwP are among the grittiest and most inspiring characters I’ve ever known.

So, please, show us your victories large and small. Be the light...and in times that is not possible, you may use my light as a guide through your challenges. We need one another and remain impossibly human. It is only by trial and error we find our way. After we find our way, remember that we always get lost again, and again. Expect this.

We’re all doing what we can. #neveralone #kathleenkiddo As an example, this was texted with my right thumb on a tiny glowing screen after hearing sharp criticism towards one of my colleagues. It came from someone who has no idea what a chronic incurable disease might feel like. And who knows maybe we’ll all get a turn to walk in each other’s shoes. #compassion#tonglen #humanity

My Dad had such a rich and steady voice, and I can still hear him now:

“This little light of mine, I’m gonna let it shine...”