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

Think / Able - and Check out My Parkinson's Facebook Page
Thanks for coming by! I appreciate it! Click the picture to follow on to my Facebook Parkinson's Page

Sunday, June 3, 2018

10 Things I've Learned from Parkinson's.

My friend Pete challenged me to write about neurodiversity. As someone who believes in me and my writing cause, I wasn't quite sure how to approach the topic my friend suggested (since I have a neuro condition, but not the above conditions), but I really wanted to do the topic justice.

His challenge dealt with this in the workplace, as well, but that was an issue I could only speak of from my experience, and that comes back to say, "People deserve the right to work as long as they physically and mentally can AND aren't a danger to the living and dead." Here, I think about how long my limits can and should be, versus my desire to stay productive and contributing to my home.

As that's not easy for me, it's even more difficult for me to reflect that on the state of others with conditions I don't have experience with.

Today, I bring that to you with the idea that I would introduce the topic and tell about how I feel it as a Parkie so that you can ponder it for yourself..

Neurodiversity is (according to John Elder Robison who believes in and advocates this cause personally and professionally):

"the idea that neurological differences like autism and ADHD are the result of normal, natural variation in the human genome.  This represents new and fundamentally different way of looking at conditions that were traditionally pathologized; it’s a viewpoint that is not universally accepted though it is increasingly supported by science.  That science suggests conditions like autism have a stable prevalence in human society as far back as we can measure.  We are realizing that autism, ADHD, and other conditions emerge through a combination of genetic predisposition and environmental interaction; they are not the result of disease or injury."

What this means to those people who have these conditions (Asperger's being one of the big ones people talk about) is to be cured or not be cured. When that is considered, the question inherently becomes, "Am I a smarter / better / more capable / me because of it?"

In a world of angry for and against opinions (think abortion, death penalty, Trump, etc. where all opinions are passionate and partisan), I'd like to get into putting my stamp on a definitive opinion to that like I'd like to do any of the following:

1) Binge watch Sex and the City, the show and movies
2) Attend a Justin Bieber concert, complete with backstage passes
3) Be forced to binge read every article about Trump or Roseanne, which has been published this week (one article is bad enough ... at this point of media deluge, even people who cared or write these articles must be tired of looking at them). NOTE - I'm not a fan of either, but that said, isn't there anything else to talk about?
4) Reenact Andy Dusfresne's escape from Shawshank Prison and not be allowed to shower until the next day.
5) Be forced to live on a diet of only cauliflower, broccoli, Brussel sprouts, and salad.
6) Hang out with the Real Housewives of anywhere for a weekend (this includes any of the Vanderpumps or the Southern Charmers; it goes double for Lisa Rinna).

7) Work 1 more day at a telephone call center (I worked at one center for 2 days). Let's just say, some people can do it, but the phone and I arena't besties.
8) Get a NY logo tattooed to my arm in a visible place to show support of the Yankees
9) Swim with the sharks while re-enacting the end of the Indianapolis after I was smeared with blood. 
10) Be the guy who announces that Thanksgiving / Black Friday shopping has been delayed at a huge Walmart.

I think it's fair to say that we all want to be inclusive and empathetic, but the individual answer is difficult in every personal case, let alone to place on anyone else. So Bill James style, I ask the following to get you considering your feelings about your life situation:

1) if I have a condition, can I be made better to be cured from it?

2) am I happy the way that I am or do I really need to be better so that I can be happy?

3) is not having this condition going to put me in a better place?

4) how has this condition shaped my personality?

5) what would I sacrifice / gain in my life if I chose to not be this way?

6) what are the risks of getting this done? Are the risks worth the rewards?

7) Is there something I want to be that requires removing certain risk of said condition?

FOR ME, I want to explain this from the perspective of my own neurological condition - Parkinson's, which is a huge part of my life. It's like a conjoined twin, but instead of being in simpatico, we hate each other's guts. Like two kids in the backseat, we annoy one another. However, instead of poking one another, we whack on one another in ways that cause a more definite pain.

So the question becomes, if a doctor came to me with a miracle cure that was tested and for "realsies" (not the miracle cure tourism that attracts too many people with untested promises), would I want to do it (if I had the money available) or do I feel that there is a place in the world for me that only this neurologically-affected version of me can achieve?

1) I don't regret having contracted it... at all. It's taught me a lot about myself. It's made me A) humble, B) empathetic, C) committed to a cure, D) committed to educating about it, E) mature. From what we do in our daily relations to realizing that thinking things like "I'm not like those people" isn't right to say or think because we are / will be going through the same process, we all learn a lot. I know I have. I've seen the change in me, I've feared the future, I'm standing up for myself, I'm being encouraging of others, and yeah... I may not always be PC, but I am working on empathy / kindness / karma as much as I can. If nothing else, I'm trying to avoid negatives (like too much nonsense news - even if I am currently viewing Baywatch (not a total waste of time, but unnecessarily rated R).

2) I do regret that it's made my family and friends sad. Nothing can give back for all of the nastiness and tears, but a check from Ed McMahon would be acceptable for starters. For this, I'd like to see Dwayne "the Rock" Johnson Rock Bottom Parkinson's into submission.

3) I don't spend ANY time thinking about going back in time to stop how I contracted it. Time travel doesn't exist, and if it did, I'd rather avoid dumb mistakes that do more to hinder my life and hurt other people than what PD has done to me (really). On a good note, I'd also rather go back in time and see the Rolling Stones on the Exile on Mainstreet tour (their best album and the height of their sound). I'd rather meet / see authors / philosophers / musicians / sports stars /people who influenced me, but since they died before I had a chance to know them, I never did. I say this in all seriousness. Without contracting PD, I'm still a flat character with all too much negativity in my attitude. While PD sucks, I was on a negative slope before that. Now, I'd like to think my life has more potential, even if it comes with a lot of shaking and bridge out signs.

Additionally, time travel would let me find out what happened at Roswell, Kecksburg, and Woodbridge. I really want to know if aliens are real, you know? Seriously. It might sound funny to say, but that would be higher up on my list of what to go back for (then again, I see my PD as inherited through heredity, so what can stop that other than not being born?).

4) Would I like to have my hearing, sense of smell,  blinking eyes, smiles, elasticity, calm hands, a pain-free left foot, lack of gaps in thought, freedom from meds that have side effects I don't like, the freedom from values choices of what I can give up to keep pace, not having to make peace with losing lots of important things, and not worry about financial / death concerns over hospital visits for nasty stuff, let alone all of those weird sleeping / dreaming issues? You betcha!

5) The right to never make a decision if I'll have my brain operated on while I'm awake.

6) The fact that I never would have met and inspired / been inspired by such great people.

7) The fact I'm racing against time to complete a bucket list that requires working, money, time off, ability, and endurance. Wouldn't it be nice to have some wiggle room here?

8) The combined feeling that women somewhere are saying, "Damn! I dodged that bullet not being a caretaker for you and your PD affected sorry self" / the feeling that I'm thinking, "I'm glad I never counted on you for commitment of love forever, since you'd fail tremendously at being my caregiver, let alone empathetic partner in life." (Note, this is not a part of every relationship / dating / crush I've been on at least 1 side of, but it does reflect many non-relationships I didn't make real).

Not every person / partner / caregiver can handle this commitment of "in sickness and in health," and in many ways, we are lucky when we have the right ones.

One of the worst parts of PD for anyone is how it slaughters relationships for some people.

Sad-faced emoji crowd of faces equivalent to that of a college football game.

It sucks to lose the wrong ones because there was "love" there (something that's easier in able-bodied times), but hopefully, in our time with PD, we find people and appreciation in our new normal with better people. We get rid of the people who don't stick around to take their crap out on us while moving away from the relationship or looking for some grand insurance payoff.

Nevertheless, is saving a relationship worth being cured of anything, especially if it takes away a part of our identity?

Who am I to say.

9) The fact that my wife stands strong for me (as does my family and friends), and whether she ever thought about it, this disease has given her (and my family) a new level of strength.

10) Not wondering if every person who comes into my day to day world is thinking I'm a lesser person for my 1) lack of melody in my voice, 2) unblinking eyes, 3) inability to clearly hear higher voices spoken with low volume (ESL speakers are a major problem that causes me to wonder if people will think I'm a racist - HINT! I'm not), my rigid movement, and sometimes (though not always) my tremors. Let's just say, dropping the disclaimer of, "Hi! I'm Dan, and I've got Parkinson's... that can go out with the trash.

Yes, like Black Jack Mulligan, I wield the Claw (only mine is dystonia)!

SO TO ANSWER YOUR QUESTION - now that it changed me in so many positive ways, would I still wave goodbye to Parkinson's and put it on a moving truck as soon as tomorrow morning 8AM?


I would run with my progress, but I would live stronger and truer because of said changes by kicking PD to the curb (like Hillary should have done to Bill).

What do I think you should do?

The Phillies are really doing well this year.

No comments:

Post a Comment