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Welcome to the Parkinson's Journey

Let’s start here: what if we called Parkinson’s a journey rather than a disease? Defining Parkinson's disease (PD) as a journey immediately gives power and autonomy to the person with PD. It sets one up for an adventure. As opposed to focusing on it as a disease, which can make one feel sick, wounded, infected, less than, and, perhaps, fading away from life as they knew it into oblivion. Calling it a journey reminds the person who’s living with it “I have choices to make - I’ve got power”. It also points to the identity of the person - challenging them to accept themselves as a hero - as opposed to ceding that role to a doctor, pills, a care partner, hope for a cure or anything else external that might make one feel less than or passively waiting for someone else to do something. 

One of the most important elements in both storytelling and having PD is being active. Movement is crucial to good health outcomes for everyone. Movement on the outside encourages movement on the inside, including blood and air flow, stimulation of our defense and natural reparation systems. For those with PD the need to move and be active is, perhaps, heightened even further. The nature of PD tends to make people feel stiff, stuck or apathetic - I want to, but I can’t. In storytelling, a passive hero is boring. Boring, in storytelling, is one of the two main problems. The other is confusion. More on that later. Let’s get back to activity, the natural antidote to boring. 

In storytelling, an active hero is engaging. She is interesting because she is interested. While it’s natural and understandable early on for her to hear this call to adventure and refuse it - it’s too big, too scary, filled with too much unknown - the journey can’t begin until she says yes, and takes the first step. She quickly recognizes that whatever she’s up against on this journey, most of which she will not understand at the beginning, she’s going to need help. This is where the mentor comes in. A hero not only accepts, she seeks out her mentor. Once again, this activity and engagement matters. This opens up the hero to the very basic human desire of wanting something. What she may want is infinitely broad. In fact, it’s not important to fully define that want at the moment. Just to know, there’s something “out there” and actively begin the pursuit is enough. Because that will drive her to cross the threshold from her ordinary world into the special world. 

A special world is a place that is new, perhaps frightening or uncomfortable. It’s a place of growth and transformation. It’s filled with people that look, act and perhaps sound different. The first instinct may be to run away - to say, I don’t belong here. Often a mentor reinforces the need to engage in this foreign place. A new ally may emerge, welcoming the hero. The hero may earn a new name or identity here to further signify her change. There may be people or things there that challenge the hero - that tell her she doesn’t belong. She gets to choose to accept these threshold guardians’ version of her story and return home or push through the resistance into a set of new challenges. In this phase, testing herself with new activities and opportunities, she will find both allies and enemies, internal and external. She will hear familiar voices from her past - some encouraging, some trying to pull her back. The mentor may be around to help guide her through the rough spots as she trains for something new. What that new thing is becomes the point of focus. She sees a daunting task before her - a dark cave ahead she must enter. 

There is something she wants more than anything else in that cave. That immediately brings up her greatest fear: What if I can’t have it? What if I’m not worthy? What if I’m too old, too sick, too…? Armed with her greatest wish and greatest fear, she enters the cave. This is where she sees these two things go head to head. Whatever happens, she will emerge from the cave a different person. She very well may have been wounded in the cave. And she will have received something of value - a reward. This may be internal, such as knowledge or confidence. This may also be external, perhaps a sword, amulet, or magic scroll. Upon reflection she will see she has changed. 

She now must head back to her Ordinary World to share what she has learned. As she crosses the threshold again, she will be pursued by demons of insecurity and doubt. The eternal questions will dog her: Have you done enough? Did you forget something? Who are you to call yourself a hero? Whatever she faced in the cave will make one last desperate attempt to take back what the hero won from it. And in this moment, where all may seem lost, something must die. The hero realizes she can’t return as the same person who started this journey. Whether it’s a belief system or an attachment, something must be left behind. With that, the hero rises from the ashes, resurrected, enlightened and empowered in her new form. She returns with the elixir - the knowledge that the journey she just went on was not, in fact for her at all. It was so that she could bring what she learned or gained back for others; to heal them and set them on their own journey. Now a vital person, she heroically vitalizes others.  

To summarize: what happens when you say “yes, and” to your hero’s journey? You are empowered. You recognize what happens next is up to you. You find a group of fellow adventurers and head off into the unknown together. Do not mistake this for an easy road. It’s not. It is, however, a path filled with discovery, treasures, monsters and the constant reminder that you are, in fact, the hero of your own journey. Welcome to the Parkinson’s Journey.

For more on exploring your Parkinson's journey, please visit the Day One page.

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Karen Patterson
Karen Patterson
4 days ago

Living life as an adventure is a far cry better than feeling less than. Lost in a downward cycle to oblivion that keeps people stuck and  worried about tomorrow. 

The stories help free us from that mindset. Just as no one asked for PD. No one asked to sit on the sidelines and watch their life go by. Or to be a wallflower in their own ballroom. The storytelling teaches us to look beyond the negative reality of this condition. Opening up our minds in a way we can’t turn away from. Bringing us back to a belief system where anything is possible. Giving the hero courage to step outside her comfort zone to reach for life goals we thought…

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