Secrets, Fears, & Vulnerabilities with Parkinson's: Part 1
Last updated: December 2022
Right now, Bert has 2 specials on Netflix, which begin the same way: the crowd cheers as he runs out and takes off his shirt to reveal his beer belly. This gets more applause and then he goes into his monologue.
One show begins with “Secret Time,” where he humorously dished on his family's "flaws." Here, revealing ourselves to others is important, though Bert should have hidden some of his. In that spirit of revealing secrets, I will begin with sharing Parkinson's secrets.
We writers may be “open” about our disease, but we are still vulnerable to “truly” opening ourselves up, as compared to expressing all of our symptoms to you, dear reader.
The only difference between advocates who write and some (definitely not all) people who read them is that we tell our story in words and pictures to the world. By that, I mean that we control the narrative by spelling it out online.
Same interview, different station
When we are comfortable with and accepting of our symptoms, we can take our Parkinson's scenario on tour. However, it is all about becoming comfortable with the scenario.
I do this through writing and communicating with living and deceased writers (a fancy way to say reading). However, I also have other helpers.
Like many of you, sometimes, we have therapists. Chances are, if you have discussed Parkinson’s enough, you will find you tell the same story over and over. It is like a TED Talk, where we perfect our nuances for each new audience. That leads to its own set of problems. We can reduce the personal to a rote memorization of a story we have told over and over.
In cases like this, if the therapist is getting to know us before helping us through to the other, better side, we often wonder why we should even bother to establish trust with someone new and someone looking to get in our wallets. Like many of you, I have been there, but I pushed through in the hope of the best, despite my apprehensiveness. Fortunately, fate saved me before things got too bad.
Talking out one side of my mouth
Other times we find a friend, in flesh and blood or in black and white font, who can relate to our plight from some similar shared experience. Some realities are "too painful" to discuss with our closest loved ones. We do not want them to suffer, so we take our pains inside instead.
Why should we get our loved ones upset with what will pass over in due time? Besides, it is easier to do so with a fellow Parkie or our "therapy buddies" (people who enjoy helping and relating to others as an essential focus of their lives; I would like to think I am one to some people) than our loved ones. Besides, we know we have to be tough and capable of protecting our closest supporters from this crap sandwich reality. Thus, the mantra is "bear any burden! You can tough it out!"
I know this is not the appropriate way to respond, but – sharing secrets – that does not mean we do not do it (in the same way, we can fall asleep or begin our days without taking our meds). I guess you can say we do not have it together 100%, but sometimes we smile and push through like we do. Just do not expect us to be perfect. At least, I am not.
Talking outside of the other side of my mouth
Then again, we need to be honest with those people in our lives. Love is open, honest, intimate, and accepting of the best and worst. Just because people cry at our plight does not mean they will run away (though some do).
There are couples who serve as role models in their actions, advocacy, and togetherness. This is where we learn to remember the open, honest, intimate, and accepting of others.
This is what we would expect from others. Our hiding of illness is not protecting people. Sure, there might be "let's wait for an official diagnosis," but there has to be a quickly transferring 5G info-sharing network in marriage or close friends and family.
So ignore everything I just said in the last sections. Write and speak appropriately to all audiences who matter. Have your therapists, your online research friends, and therapeutic friends, but do not lose sight of your role in your closest world. Everyone can help with something, but partners and close ties need to know the whole story.
Life as a caregiver
That said, I will say that I am a firm believer that caregivers need outlets with other caregivers to hate on / troll the disease, but still love the person with the condition.
They can do this in private settings. If my wife went to one, I'd want her to go alone. There are some words I do not need to know in the secrets she speaks regarding what she goes through with Mr. Parkinson's.
Here, people need alternative outlets where we do not create the feeling that the person with Parkinson's or their loved one is a burden or that the caregiver lacks empathy when he or she steps on the battlefield since that is not the case.
I know marriage is about love, togetherness, being a team, and having each other's back, ears, and eyes. Nevertheless, our other relationships and outlets help alleviate daily and compiled ventings, too.
Nobody can be 100 percent all the time. Besides, a lot of people do not listen to loud metal, angry grunge, or heavy hip hop in order to scream out the pain and frustration. I do, but you may not, so do what works for you.
Just stop keeping secrets from the people you need to be open with. And yeah, share secrets, despite the tears that may come. I am working on this, too.
Do you experience issues with spatial awareness?