Person with open head revealing brain helps mini personified thoughts come out to chat on his palm.

Secrets, Fears, and Vulnerabilities with Parkinson's: Part 3

In this final section, I want to discuss my feelings on vulnerabilities as a strength. If secrets aren’t good and fear leads to the dark side (Master Yoda), then vulnerabilities should be seen as a positive since they create honest and intimate connection.

 

This is not The Notebook, but instead, it’s, “I trust you to see the real me and still respect me when I show you who I really am.”

No pretend. Be comfortable in our own skin. No fear of our vulnerabilities at being gawked at.

We’re good people. We matter. We’re all someone’s something. We belong right in the middle of life. We have a lot to offer. Don’t lock us out or put us out to the Pasture, in your thoughts or action, Great Big World.

Deciding whether or not to share secrets

In our minds, our fears of being less lead to a big wall of vulnerabilities. So what’s an online 24/7/365 patient health advocate to do?

Clam up about certain things that will lead to our alienation / stigma / security. I know that you, dear reader, expect us to give 100%. However, not all of us can offer that. But we try, despite our walls (yes, we've got them, too).

Coding our response to onlookers

Here, there are the things we don’t say in so many words. Like Hemingway’s descriptions of Jake Barnes in The Sun Also Rises, the full list of symptoms is never laid out, but it’s there if you’re looking. Sometimes, you can read between Hemingway's lines, and you'll know what is implied.

After a time, and unlike Hemingway's iceberg style of writing, we advocates are sometimes ready to let go of vulnerabilities. There, we can express more of what some people might consider "embarrassing" symptoms. However, we only do so when we find comfort.

It’s not, or at least it should not be about branding ourselves as a character to generate income. Instead, for me at least, it’s about having something I wish nobody else would have to go through. If my story creates medical minds who want to treat and cure this, then I’m doing my job. If someone else doesn’t feel out in the cold when the body goes in a new scary direction, then I’ve at least expressed that the new abnormal is a “normal” experience. Be this for people with Parkinson’s, caregivers, friends, or family, I’ve contributed something.

After all, this has to mean something, or it’s all just empty suffering.

We put ourselves out there

Nevertheless, despite being a series of pages on a website and not a flesh and blood in-person friend, we’re still vulnerable because our words are available to anyone with an Internet connection. Ideally, anyone who comes here is a good person, but we do face trolls, which can really hurt people. Going out into the open invites the worst with the best.

Sadly, it’s the reality for many bloggers, especially women, who seem to get trolled a lot and in horrific ways.

Some things are best left unsaid

Yes, there’s things we don’t say out loud, because to express these fears makes them potentially real. There are facts we confront in who we are and what we will one day POSSIBLY become, but they don’t always make it to paper or the screen, let alone in family / holiday dinner conversation.

For these, I won’t even beat around the bush or entertain theories. Some thoughts are too sad.

Our real-life lives

In my day-to-day, face-to-face life, I am the only Parkie I see. I know people online, but we don’t watch sporting events, eat pizza, and drink raspberry iced tea together. This is true for many other people as well. We have Internet connections, so we begin there. This is something valuable with social media. I still work, so I can’t make it to Rock Steady Boxing. The only local PD group isn’t Young Onset based, so I’m forced to find connections other ways.

Because of this, new people who advocate or read advocates tend to come into this writing game knowing of one another. While we were out there refining our craft and / or becoming involved, we looked up to the all-stars of the game.

“I’m writing for the same website as Perky Parkie,” I would tell people when Health Union signed me on. Unfortunately, non-Parkies weren't familiar (though they should have been).

We make Connexions

At Connexion, I met Migraine.com advocate Lisa Benson, who also talked about writing with the rock stars she had looked up to for advice. She’s a writer for one of over 25 different brother and sister websites under the Health Union umbrella. Sitting with her and the rest of the Migraine.com team in attendance, I learned what my fellow disability advocate writers had to say about the experience.

Additionally, I met Karl and Angela Robb, Frank Church, and Tom Sheppard from this site (great people, one and all). I met a lot of other people from our other sites there, too. There are so many, it’s hard to list them all. I met people from Canada and England, which is quite the distance for some people to travel. Yes, they came from far and wide, old, middle-aged, and young. They came alone and with caregivers, but they came. Some we met; some we met after the fact on our Health Union site. For instance, I now read Steff Di Pardo, from Ankylosingspondylitis.net, who talks about battling tough conditions in her youth.

I'm amazed at many of these authors' strength, as they advocate at an age I was way too immature and emotional to handle tough temporary situations, let alone Parkinson's.

While at Connexion, people listened to the writer Nora McInerny tell her life story of how she had three big losses in her life. She coped by writing them into life stories and speaking about them in a podcast. We listened to Lainie Ishbia and Estele Lugo tell us about their work in running Trend-ABLE and how we can learn to speak more positively about our conditions, and dress stylishly!

Control the narrative and help others do the same

Neither of us are teenagers, so it’s not like we’ve never met famous people, but yeah… I once met Jimmy Choi. He taught me that it's all about being human with the people whose lives we touch. For me, it's all about helping people get out in front of things to tell their story - not have it told to them.

Important note – I'm not egotistical enough to be a rock star. Besides, I fell over backward trying to tap my foot and play the snare drum at the same time around age 8. As my wife would laughingly state after my diagnosis, "It's hard to discern between Dan's natural clumsiness and Parkinson's." I let her joke with me since it's all in the name of looking on the lighter side of life.

The takeaway

Young Onset Parkinson’s can be unique in the disability world in that we’re probably the only Parkie, let alone young Parkie, some people know. Be kind to all of them. They’re learning, too. It’s your job to raise your caregivers well. Be gentle and appreciative, especially while it’s still possible to share those thoughts. There may come a time when you can’t.

Also, it's one thing to maliciously gossip about us. It's another to mean well in actions, but just not know. We can give the latter the same slack we would want if we didn't know.

Remember, it takes a lot to be vulnerable, but by excusing other people's questions about our vulnerabilities, where appropriate, we can eliminate our secrets that lead to our fears and frustrations.

Read part one of this series where Dan talks about the secrets and part two, where Dan talks about fear.

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