Think / Able - and Check out My Parkinson's Facebook Page

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Tuesday, October 23, 2018

A More Selective Team: The Need for Fewer New Members


           Back when I started this blog, I began by stating:

            Currently, there is a commercial on television that features an average human being doing something that is spectacular in an everyday kind of way. When it’s halfway over, the person reflects that this must be how it feels to be Odell Beckham, who is a New York Giants player, scoring a touchdown. When the reflection is over, Beckham is also shown reflecting his football celebration as this is how it feels to be that other everyday person made exceptional. There are several of these commercials, and they all work well because they relate to people’s desires to have the accomplishments of their life understood on a celebrity level.

            And so it seems that in life, we find ourselves relating to many people who do and experience things like we did, somehow hoping that they can look to us, too, for inspiration. Perhaps, it’s even possible to ask ourselves if by experiencing and overcoming these extreme situations simultaneously, we must all have something in common. However, that’s not always true. For example, Kurt Vonnegut referred to things like the camaraderie of being Hoosiers (his own personal example) as a granfalloon. Here, this idea of a “failed karass” reflected how people put stock in superficial things to establish a relationship with other people. Here, he may have been onto something with our association of people we don’t know as people who are like us.

            Then again, this might not necessarily be true.

            For instance, by the definition of shared experience, I am in an exclusive group that includes such luminaries as Michael J. Fox, Mohammed Ali, George H.W. Bush, Johnny Cash, Salvador Dali, Pope John Paul II, Mao Tse Tung, Casey Kasem, Vincent Price, Roger Bannister, Billy Graham, Kirk Gibson, Charles Schultz, Robin Williams, and the father of Wayne Gretsky amongst others. There are a few names on that list that I’m not letting in even though by definition of the requirements to this club, all you have to do is have Parkinson’s disease.

            There has to be some level of exclusivity to keep some of the riff raff out so that the rest of us don’t have to relate to certain nonredeemable historical leaders.


           It's important to know that we're not going it alone when it comes to any rough ride that we're about to face. Famous people can do wonders to make other people aware of things that they or those that they love are going through. Here, I'm a firm believer in letting people know about medical problems related to Parkinson's and its related co-morbid conditions from firsthand experience. I personally believe that we have nothing to lose and everything to gain. I'm always humbled and thankful that people choose to read and listen to my words.

           Nevertheless, I'm not an A-lister or even some Kathy Griffin D-list level person. For this, looking at someone like Dale Earnhardt Jr. promoting proper medical treatment and awareness for concussions or Sandra Day O'Connor stating that she has dementia - most likely Alzheimer's, we can see a certain level of awareness for treatments and medical options. Their bravery and notoriety allow them to pave a clearer path to hope for people everywhere.

           This is exceptionally important when it deals with neurological concerns since the brain is the computer running the whole system. Here, it's true that neither person is a Parkie, but our shared neurological issues have some parallel paths, and for that, any person standing up to express the need to know and to cure / treat problems is a role model in my books.


           However, not every member of our team is someone who merits a story in the newspapers. However, that doesn't mean they're any less important. Last week we added 2 new members to the Parkinson's community who were in some way connected to me. I found out about both of them in Facebook messages. The first was a friend of a friend. In this case, the person I knew was devastated at what happened to her friend. How could she not be? In the second, a childhood friend's father, who I knew since I was in 4th grade (35+ years of my life), also received a diagnosis and so his son was looking for advice.

           By virtue of being a writer / out and about Parkinson's activist, I hear about a lot of people who have medical / neurological issues. I'm always saddened to hear about people's plights. I know that people don't choose these paths, but I wish there was a better screening out process to keep people from going through hurt.

           "NO! Put down that case of cancer. That is not for you!"

           If only it were that easy.


           With regard to the new Parkies, in both cases, I offered advice and connection as I offer it to anyone out there. Advising: it's what I do personally and in another week, professionally (though in that case, it will be regarding education). Nevertheless, there are 2 more people on a team that should have no members, not even the riff raff I chose to exclude day 1. Nobody was watching, and they picked up something that sucked their dopamine dry.

           There should have been someone there to keep the condition away. In short, someone had one job to do, and wham.

           If only it were that easy.


           Put simply, this condition sucks, even if many of the people who have it are some of the nicest, most caring people around. They support each other. They push themselves. They campaign for the cure. Many of them are people we might hang out with in a life that is free of Parkinson's, dystonia, neurological badness, whatever. Still, I can't help thinking there should be a door guard outside the club, like at Studio 54 in New York City, who would tell us all that we don't meet the standards of being a part of this membership. I'd happily take myself back to life as I used to know it and leave the "costume" I was in behind.

           I'm sure our team's newest members would, too.


           As kids, we grew up believing that there was strength in solidarity with people who were just like us, so we fashioned our identities in much the same way. Even before they called it "keeping it real" or saying "keep it 100," our little subgroups made us play the role to the required points of the definition so to not be seen as a "poser."

          Not everyone could do this well, though. In this, some people lacked something inside that made them feel fake or touching down for a temporary stop-off in the game of life as they flitted off for something else. Other people, like the gate guards at Studio 54, knew how to weed them out and leave other people hanging out on the outside waiting to get in. Many of them left, and we never missed them. Hopefully, they were happy wherever they landed.

           As we get older, save for the midlife crisis moments of reliving missed youth or buying that Corvette, our stopping points tend to be more permanent. There's no more wild and cool haircuts. Chances are we couldn't pretend to be twenty or thirty somethings anymore because we just couldn't handle the difference in ideology to those younger generations. However, sometimes life gets in the way of our standard identities and routines, even this late in life. We find that all of our qualifications just changed and we find ourselves in the middle of a new game, on a new team, with no clue where or what we are. All of our perfect little plans are done, and we're washed up on a new desert island.

          What then?

          I'm glad there's so many different elements of this team (and many others like it) to be a part of. Not every one of them is for everybody, but there's enough shared experience, empathy, and openness to welcome everyone who comes to the door.

          I just wish people would stop knocking. This condition has got to stop. The room is too full already.


ON A SERIOUS NOTE... welcome back to blogging Perky Parkie. Glad you're better.

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