Introducing more of me: re-imagining government, mangoes and Parkinson’s disease
I’m Thea. Some of you may know me virtually only. Some of you may be new friends. Some of you may have known me already for decades.
Today, I’m writing a more personal post than usual, and I imagine it will be some time before I write a post like this again. Today, I wanted to introduce a bit more of myself: in addition to being passionate about re-imagining government, I have three beautiful children, my favourite fruit is mango and, almost exactly a year ago, I was diagnosed at the age of 36 with Parkinson’s disease.
The reason I frame my diagnosis like this is important. It’s because having Parkinson’s disease is just another fact about me — amongst many. It doesn’t define me, but it is also part of me, in the same way that having children, or really liking mango is neither all of who I am, nor completely irrelevant to my sense of self.
I’ve spent the last year digesting this news and working to assimilate the diagnosis into my identity. Initially, I wanted to keep it very close. Now, I want to share. But I’ve been struggling to work out how best to do this.
I’ve been trying to drop it casually into conversations. But that’s not working very well. Even though I am completely accepting of this condition now, and don’t feel like it’s the disaster I initially thought it was, it’s still an emotional conversation. Emotions trigger my tremor, so it ends up being both emotionally and physically uncomfortable.
So, I’m trying a different approach. I’ve decided to write about it, and share it this way.
There are three key reasons that I’ve decided I want to talk more openly about my Parkinson’s.
Vulnerability
The world would be a better place if we more readily embraced vulnerability. Brené Brown speaks powerfully about this. Yet, our culture encourages the opposite — the sharing of accolades, and the bottling up of perceived weaknesses or imperfections.
People (myself included) happily broadcast their achievements, but share far less about their vulnerabilities. This practice contributes to a culture in which failure is seen as something to be avoided and people feel unreasonable pressure to be constantly winning, succeeding and thriving. This is not productive, and it’s a key reason why the world looks the way it does. Imagine how different the world might be — what politics might look like, how capitalism might be shaped — if it were governed by a set of principles which valued vulnerability over strength; humility over hubris; authenticity over bravado.
Vulnerability also brings people together in powerful ways:
“Imperfections are not inadequacies; they are reminders that we’re all in this together.” Brené Brown
I’ve found that in life, when I share my own vulnerabilities, it gives others permission to do the same. So I’ve decided to share a big one, hoping that it contributes in some micro way to the shift I hope to see in the world.
Catharsis
The second reason I’ve decided to share this is more personal and self-interested. I find opening up about my Parkinson’s to be quite cathartic. This is because while I find it quite difficult to initially tell people about my diagnosis, I feel a sense of relief when people know. It’s also because, in keeping this part of me concealed, I attribute to this disease a significance that it doesn’t need or deserve.
More pragmatically, my Parkinson’s is not something that I’ll be able to conceal long term, even if I wanted to. I have a tremor, which will continue to get more pronounced. Owning that, and owning the narrative that surrounds it, feels very important.
Reframing
In thinking about this process of sharing my Parkinson’s diagnosis, I sought advice from someone I have known for many years, who was diagnosed with MS about six years ago.
She said this:
“I think that being ‘out’ about MS acknowledges that the world is not separated into high functioning healthy people and those who are impaired somewhere. Rather, we are all a bit broken and vulnerable. Ultimately, everyone’s body will degenerate and the world would be better if we embraced this fragility rather than assumed absolute invincibility (and punished those who cannot be invincible).
Those who live with serious disability (and I don’t include you or myself in this) have developed the most amazing problem solving strategies and have incredible resilience. I think we can look to these people for guidance in how to navigate the world’s challenges, not to pity them. And if I am eventually going to be a part of that group, let me be a role model, not a burden.”
Amen to that.
Parkinson’s is a part of my life. Not a big part, but most definitely a part. In sharing this, I am putting more of myself out there in the hope that it lightens the load I’ve begun to feel I’m carrying in keeping it concealed.
I also hope that in being honest about a part of me that is not something to sing about, I am owning my vulnerability in a way that gives others permission to do the same.
And finally, I hope that in being candid about my Parkinson’s, I am living by the values that I believe would make the world a better place.
