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Thursday, November 1, 2018

730 Days in the Life: Holding Back the Change in Seasons from All Directions



When I think of the change of seasons from summer to fall, there are a lot of positive things that come to mind. I think about beautiful autumn colors, like the ones that were on display in October 2008 when my wife and I got engaged in the Poconos. The oranges and reds that year really stood out in a way that I haven’t seen much since then, though a few years ago we did get to wander around French Creek State Park to see some amazing fiery colors.


Pennsylvania / Pennsyltucky can be beautiful this time of year (as it’s getting now with its oranges and reds poking out). It's all about finding the time and energy to see it.


Here, Autumn also makes me think of colder mornings and shorter days. This October, it seemed like summer was hanging on well into October with a nearly 80° day before 2 days in the high fifties. We literally went from air conditioning to accommodate Parkinson’s sweat in a house that had maintained 78° of heat from the summer (with no heating kicked in) into the middle days of October. Talk about system shock!

Now, if you mix in darkness and rain, which for Pennsylvania looks to be more than 50% above average in my sleepy corner of the state, you have a perfect recipe for the seasonal blahs. Also known as seasonal affective disorder, this is a diagnosed condition as opposed to just something we call it, though a fair bit of people exhibit these signs and symptoms and have a pretty good idea what they are. The Mayo Clinic has a lot of good recommendations for dealing with this. I recommend it to anyone who might be feeling "seasonally blah."

That said, depression and blahs do get worse during the colder, darker months. For me, the first of November is always Melville’s “November of the soul.” I wish I could say I see it as Día de los Muertos (Day of the Dead, which it is), but alas…. I’m not quite there, though my feelings on the Mexican customs of remembering the dead most definitely are.


Unfortunately, I associate this time of year with the long descent into winter. Other than turning back the clock for an extra hour of sleep, I don’t ever feel happy about losing an hour of daylight after work or waking up to colder temperatures. 


With my Parkinson’s engine running hot, the sweater that feels nice outside often feels way too warm inside, so I’m in that perpetual off state of discomfort. Fortunately, most days are still about right in temperature, so I can plan accordingly. Also, it’s kind of nice that the trees are still holding most of their leaves (though the wind is blowing a few in front of the window as I sit here typing) so that skeletal branches won’t be the aesthetic du jour along the highways and bi-ways any longer than they are going to be.


Perhaps more than anything, November 1st has come to be the day I began taking rasagiline (Azilect) in 2016. At my initial 90% sure it’s Parkinson’s appointment on September 27, 2016, I elected not to go with medications until it was a certainty that I had Parkinson’s. Two years ago, the doctor’s prediction came true.

That day was a very windy, overcast, and ugly day. My wife and I were supposed to be going to go for a walk on the Appalachian Trail after the "confirmation" doctor visit, but it was just too ugly and we were just too drained, so we went out to eat instead at a diner and picked up my medication. When we came home, I began the process that I’ve done well over 700 times since: I took my "take out the faulty particles" medicine to give my brain's natural dopamine a fighting chance. Two years and several other Parkinson's medicine days later, I’m working through a medical routine and more complicated symptoms to try to be me as long as I can keep the Invasion of the Body Snatchers at Bay. The fact that the outdoor environment doesn’t help with this makes things more challenging.



I also started this blog on what would be my first official Parkinson's day (though in reality I had Parkinson's symptoms since 2011)... 157,550 visits and 182 posts ago.

With many of us who have Parkinson’s, our “happy brain chemicals” (AKA dopamine and serotonin, as well as others) are already out of balance. With fluctuating levels of dopamine to begin with, we can find ourselves in quite a dilemma as we find it harder to want to get motivated for anything, much less to go outside and get some between the trees therapy (or even fresh air). Cabin fever gets more common as the year drags on into cold days. I’ve already written about winter precautions, but I write this “State of the Union Address” with regard to autumn changes (particularly this autumn). 

For this, we need to make ourselves stay active and remember to do the things that we enjoy. We need to find things to want to do and to look forward to. We need our team to be there for us to motivate us to stay loose and positive. In this, the cold wind can freeze us out quickly if we don’t monitor our situation.


Here, I realized that I hadn’t been myself in a long time. I was starting to lose sense of me. Little things like organizing playlists for my mp3 player were getting forgotten about. The worry of the future was coming down hard on me. I could really feel it like I hadn’t since all of this Parkinson’s talk began 2 autumns ago. I had survived diagnosis, Lyme disease, 2 hospital stints, a car accident, worsening symptoms, sleep apnea issues, and the decision to not teach, and all of a sudden, I was waylaid by a seemingly impossible and un-nerving Neurological Baseline Exam and all of life’s events that happened at the same time. Compounded by Parkinson’s emotional "joys," I just stopped being me.

Then something happened out of nowhere, which is a new job in an advising position that I start November 1st. Some of you may not believe in divine intervention, but I do. It literally felt like being pardoned from death row. I was Dostoevsky after having his sentence overturned. Because of this, I felt alive again, but numb. It’s been hard to write during this time, hence my general absence from blogging, but now, I feel like I’m going to be getting back to being me and the excitement of making educational knowledge possible to incoming and active community college students.


I also decided to get back to me and to create a 500-song playlist that my wife and I could listen to in our journeys. In keeping it with what my wife generally listens to on the radio, I set the bar between late 1970s and now, roughly 40 years, where the main requirement is adult radio friendly, though I did make a few exceptions based on our age and having moved through the period that is 1989-1994. If you’re interested, it’s very 80s and 90s heavy, though it does feature all years.

Songs 201-350 of the Rawkin’ Rock / Pop Compilation (to be linked)

Songs 351-500 of the Rawkin’ Rock / Pop Compilation (to be linked)


For the reason of enjoying a celebration of sorts and to see my 2nd family of sorts, it was definitely time to have a do something fun getaway.

And so last weekend, my wife and I went to New York City to see friends that I’ve known from Air Force days (about 25 years). Friday after work, we drove into northern New Jersey braving the Nor’easter that was coming to get close enough to the city that we wouldn’t have to wake up at 6AM to do the drive to Jersey City to take the PATH trains (under the Hudson to the World Trade Center subway station) so that we could get uptown to the Museum of Modern Art (MOMA).


My wife is a big art person, and I appreciate art when it looks like something. A lot of modern art doesn’t really look like something or it just feels like someone is trying to get one over on someone. I know we’re all entitled to our own opinion. Thus, my opinion of art is that “if I can do it, it’s not art.” If it’s a huge canvas with a few horizontal or vertical lines of a different color on a monotone shading, it’s not art. If it looks like someone dumped multiple tubes of paint on a canvas and smeared them around, it’s not art. Call me traditional, but I’d rather look at the 10 millionth piece of art featuring royalty or religion, if the artist put some effort forth, than look at stuff by Andy Warhol. But that’s just me.


Getting to 53rd Street to see the museum involves hustling across the train / subway station. For those people with Parkinson’s, it’s an obstacle course of people stopping, hustling, and bustling all around them. I could see how the noise, lights, and commotion of people could be a major impediment for many people, as I was really feeling it. As we walked to the newly-rebuilt passageway, things escalated “just” a bit as sirens went off and a voice on the overhead demanded everyone's attention and told about how police were investigating a threat and to stay tuned for additional updates.


Let’s just say that didn’t do wonders for my equilibrium. With the state of all things in the world right now and for the past 2 decades, being in a New York subway, especially under the World Trade Center, and hearing warnings is a catalyst for an overwhelming sense of fear and panic. Looking all around the facility, which is huge, thinking something or someone nefarious could be anywhere, left me feeling emotionally drained. 

In many ways in our society, people become numb to the news. When a series of pipe bombs in the mail gets passed off quickly in conspiracy theories as a “distraction” or a “false flag” and people stop thinking about the real human cost, it feels like we’ve lost something of our humanity, especially when they brush off the apology when they were wrong.


When I was younger (19), I can remember traveling to London a lot for concerts and music purchasing (before Amazon). I didn’t think anything about going alone. I can remember one time when there was an IRA bomb warning in the London tubes. The person on the radio just said, “We won’t be stopping at X,Y, and Z” like it was nothing. I remember that it happened, but I don’t remember being scared by it, just "affected." Now, it feels like we need to be scared, especially since 11 Jewish synagogue visitors were killed later last Saturday afternoon in an anti-Semitic rage. 

Thinking about how I found out, my cousin posting on social media that she was “safe” since she and some of my family live in Squirrel Hill (Pittsburgh suburb where it happened), it seems odd to think that this is how we have to hear and learn about people’s predicaments and whether they’re OK. Yet for many of us, this is how we get our news. When the U.S. Navy Seals got Bin Laden, this is how we heard about it. Baby pictures, engagements, marriages, moves, and all sorts of happy news is out there, too. It's how we communicate.


And so are the crazies, it seems, hiding under the banner of free speech as they incite their hate for anyone who isn’t like them in their depraved chat rooms. And sadly, the effects of this hurt everyone, not just their intended victims. These people come in all colors, shapes, sizes, and political leanings. With an election and so many issues on the line for so many people, the stakes are raised. Civility is out the window. The knee jerk reaction of the aftermath always comes back to “what will I personally lose because this person went off the rails?” This has nothing to do with the loss of a human being or shreds of humanity, but who is coming after mine. It’s really exhausting to feel like every day is the lead-up to a WWE wrestling match with someone coming in the ring and calling someone out for something in the most hate-filled and divisive ways possible. For instance, when Gab, the platform for many of these hate-filled attacks (and the one for the Pittsburgh shooter), starts crying about its loss of freedom of speech when Internet Service Providers jettison them from their service providers, it’s just really pathetic.

I mean, can’t we all just get along or live and let live?

In New Jersey, it’s really bad now on television with the attack ads on Bob Menendez, who has been accused of paying for child prostitutes in the Dominican Republic on top of corruption charges he was legally hammered with (a really solid reason to not let him run again, though he did anyway). 

For the extreme of that election ad, it should be said that watching any of these commercials and thinking that they steer people in a direction is something I’ve escaped by not having cable. All I wanted was to watch the World Series in a northern New Jersey motel (so I can see Boston win it all), and instead, I get to hear constant attacks on this or that in between innings.


Where are the good feelings, people? How do we stay active, informed citizens, when the landscape is so dismal with all its tellings of what is going on?

That said, how can this whole time of endless political opposition cycles that we live in not depress people, with or without Parkinson's? With two sides and no middle, where is the common ground and discussion for the rest of us who are content to live and let live, to be a part of our communities, and to want to make a difference for the world? Who is left to unite us when all we’re looking for is protection from and defense of as opposed to a solid message? That's not a uniter; it's a temporary reprieve.


But enough of that because there is art, which can be a powerful expression of sharing and creating emotion. While not all art is positive, that which is can be very influential to people in finding meaning and overcoming adversity. Even seeing sadness described, we can relate to people whose shared experience creates empathy for our plights.

For my money, New York is definitely a place to inspire this creativity, though given the choice, I prefer State to City (i.e. Ithaca, Letchworth, and Watkins Glen).

Nevertheless, at its most basic, New York City, the City that Never Sleeps, was built by creative and driven minds. Erecting buildings into the sky and digging tunnels underground to interconnect these worlds, millions of bodies and minds came together to build, work, live, sweat, and die together. I can’t help but thinking of what Manhattan once was (as wilderness) to the point that the industrialization began to the place that it is now (a concrete jungle).


I’ve felt this sensation of awe ever since my days going to London (1991-1996). As the skyscrapers tower over everything, it’s just so easy to get lost in the hustle, yet every person that is stopped, pushing, sitting, or yelling something is doing so from the perspective of a life lived. They built this or work within these buildings in an effort to produce something else. Their business desires made it possible and necessary. Each person who came to be born here was raised, educated, influenced, affected, and brought to be one with this place where endless traffic lines journey uptown, downtown, crosstown, or under the Hudson in an attempt to get in or out. People from other countries heard the call and chose to travel there as well, for the desire to support themselves and their families, as well as to be a part of this giant energy. Every single one of these buildings that seem to touch the clouds is made up of lives and stories.  In their own way, they were all someone’s something. They’re not just some exhausted body on the train or random European tourist, let alone a faceless blur. By being here, they become the voice of America, even if they hyphenate their original country with this one.

As people with Parkinson’s, our lives often feel like we’re on a journey to somewhere, just pushing through, too. Other times, they feel like we were on a journey, but somehow, we got derailed. If we’re not careful, we can start to feel lost in the journey with nobody around us who sees us as something more than another passenger headed for somewhere. We stop off to have our ticket taken. We order food and are served. We line up to go place to place. All the while, we start to feel disconnected in a world of people who are making connections but not really connected. How do we slow it down to see us and them as all being grand actors on the same stage?


In looking at it like this, we’re all journeying together to be here at the same moment in a life that was meant to intersect in Central Park, at the American Museum of Natural History, or within the packed galleries of the Museum of Modern Art. When we depart, most of us will most likely never see or know of one another’s existences again, but somewhere, in some corner of the globe, perhaps through photographic evidence, there will be traces of those moments where we played a bit part in the movie of someone else’s life. Maybe something we said will stick with someone. If this is the Butterfly Effect and one tiny action here creates an earthquake somewhere else, how can we stand out in the crowd to create something memorable and beautiful that will live on after we’re gone? What statue cast in bronze will be here for us? What street will be named after us? This isn’t about Andy Warhol’s 15 minutes of fame. This is about avoiding the third Mexican death and living on in the hearts and minds of others


What added value and creations will we leave behind for others to wonder who some “Daniel Webster guy” is almost 170 years after his death? Obviously, if this statue is here, he was someone, but just because someone set it there, is it actually someone important now or is it just a chance to reinvent history in romanticized notions of what never came to be?

With our lives, no matter whether they be Parkinson’s or Parkinson’s free, we are all on a finite timeline with an opportunity to bring value to the life that is sitting around the table waiting to be served, helped, entertained, or fixed. What have we used our brains and minds to do today? How will we be remembered? If this is our Day of the Dead, what words will people speak about us so we don’t reach that third death?


On our trip, we went to MOMA and the American Museum of Natural History, which are the kind of things that educate and inspire us (or they should). There’s something about being able to go into a huge hall with other like-minded people and reflect on Van Gogh’s Starry Night or works by Picasso, Monet, and Matisse. Of course, there’s paint scribble works by people like Jackson Pollack, though other people might find them to be meaningful. For me, as I said, I generally like my art to look like something, though I do like surrealism. Because of that, I was upset that Dali’s Persistence of Memory wasn’t on-hand (it was leant out). Let’s just say I didn’t feel the same about Andy Warhol’s Campbell’s soup can painting since he’s pretty much a hack (though I do like some of the Velvet Underground’s music). All the same, we took it all in, and I didn’t touch anything or give too many failing grades / comments out (at least out loud). Other people taking selfies and touching the frame of a Monet… not so much.

Don’t worry; it’s only priceless.


In the end, we enjoyed our time with friends and wandered the upper part of Manhattan and the beginning of Central Park (in fall). It’s really beautiful, even if it’s way too crowded. But then again, it’s the city. Of course, bodies are going to be pressed too close in the dinosaur halls of the American Museum of Natural History (minus it’s Tyrannosaurus, since the room is being remodeled). Fortunately, the oceanic life room is still available, as was the North American mammals room, the meteorite room, and the origins of life room. This, unfortunately, was all we had time for. Let it be known that I could spend 3 days in there, easily, if all the rooms were a go (gems and minerals were also down for remodeling). There's just so much there.

Because it’s all about expanding the mind.


As our Parkinson’s increases / we just get older, our minds often lose speed and storage space. I can’t say this doesn’t scare me, but while I can, when I can, I want to be living, learning, loving, and enjoying life. Parkinson’s has taken a lot from me, but sitting here, I don’t want it to make me a middle-aged man with his memories just yet. I want to find excitement and conversation and purpose. I’m glad I had this weekend (and Monday night when I went back to see my friends again in northern New Jersey) to do that.

No matter what the next years of Parkinson’s brings, I want to hold tight to the positive and push away the cold winds of winter as long as I can. Better to go gray / white with class (like George Clooney) than to end up feeling and looking old before my time.


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