Strength to Keep from Going Under

In trying to recover from the post-nasal drip that's been eating away at me and being limited on my medications, I've been taking it easy inside, for the most part, watching way too much Netflix and Hulu. For the past couple of days, this meant re-watching the early seasons of The Walking Dead, which I haven't seen since I first watched them in 2014, prior to playing catch-up to begin season 5. For those people who watch the series, you understand what the show is about. For those who don't, somewhere beneath all of the zombies and outlaw bands of people roaming the land after the zombie plague is / was a solid story about characters fighting for survival and keeping people going in spite of a horrible virus that had infected everything. If it were just 8+ years of zombies, it would have gotten old quickly, so what keeps it going is the characterization.

In looking at Parkinson's, that's a lot of what we do with this batch of nastiness that hit our brains and stole our dopamine.

For Parkies, while we're fighting our own real life monsters, you know the tremors, mood fluctuations, dystonia, dysphagia, dyskinesia, bradykinesis, cognitive issues, movement problems, loss of independence, and sleep issues that we face, we need to keep ourselves and each other up as much as possible. Granted, it's impossible to be up all the time, and it's impossible to keep the symptoms in check 24/7, but we need a plan to stay active, stay upbeat, and stay us at all times because it's obvious that we're going to hit the wall of confrontation at some point.

And when it comes, we need to be rewired strong enough to take the waves and the hurricane that is about to hit us and stay standing.

For caregivers, there's a front row seat to the game, which, frankly, sucks to watch "in sickness and in health" and / or the loss of family and friends as we know them (and there's nothing we can do to stop it - just comforting the patient with our "there, there" and "thoughts and prayers").

Here, caregivers need places where they can go to recharge before Parkinson's damages by association. In this, Parkies are not contagious, but the suffering sure is (truth be told, I can deal with a lot of things, but I absolutely loathe watching what Parkinson's does to my team).

There are a lot of things in this Parkinson's world that weaken our outlook on this whole game. Sometimes, they leave us with the nothing feeling of apathy, ennui, and general "don't give a hoot-ed-ness." Other times, these beasts consume us with the eating away feelings of depression and hopelessness. The existential crisis that is knowing we're becoming shades less than what we are is like starring in an updated version of Invasion of the Body Snatchers.

From the minute we notice the symptoms that need to be diagnosed and named to the diagnosis itself, there is a world of fear and uncertainty. Assuming we make it to this first crisis of faith in what hand we have been dealt, who we are, and where we're going, as well as the "why did this happen to me?" / "how could something this horrible be allowed to be?" / "how did it happen to me?" questions, we are faced with the 5 Kubler-Ross Stages of Grief.

1. Denial and Isolation
2. Anger
3. Bargaining
4. Depression
5. Acceptance

Depending on what symptom we notice first, we can figure out what is going to be the way that we will be tested on this journey, at least for the first part.

Just like with all other things, the key is to "be here now" and to slow down the movements that are affecting us. We need to approach them in a calm, logical order as long and as often as we can. Sometimes, this is realizing that I'm the car's passenger white knuckling it as my wife drives at night in the rain. The key then is to close my eyes and work on my breathing.

It's going to be OK. No cars are going to crash.

If it's tremors, we may start to wonder when will our hands become too shaky to do things like button our clothes. When will our shaking hands touch someone else and cause them to feel startled? When will someone else question what's "wrong" with us? When will we become too unsteady to work / drive / live on our own?

If it's cognitive, we'll get caught in the "when will we lose our ability to think / process / speak / communicate" trap? With these problems come issues of loss of independence, abandonment, and being a smaller part of what we once were. How can this not be big and scary, especially if we witness other people who are suffering or hurt by the process / side effects of the condition?

I know it's not optimistic to write these things, but they're things we face, so confront them, we must. When we do, we need to know who we can go to and how. We need to know how we can move away from these things in the now and build up our strength for the future.

Once lost, strength takes a lot to rebuild. It's not just hoping that "it goes the other way, too."

I've read a lot of books about survival mindsets, but I find that they only go so far, though I do have my favorites. There's no human contact in a book, so I'm glad to have an option like therapy, though with only 3 sessions in so far, it's still in that getting to know you stage. We talk about life, love, the pursuit of happiness, and fear, anxiety, problems, and life changes. It's nice to have another mind to offer solutions and alternative ways of thinking.

It's often hard to express the emptiness and pain of our lives to those closest to us since we don't want to bring them down. Nevertheless, sometimes we just need a hug and a big dose of love, even if we don't want to get into it all. I'd like to think intimacy is enough in a time like this to just understand everything in a tactile embrace without the exact words. Why say things out loud to make them "that real," unless we have to when the listener need not hear it confirmed? I guess that's a man thing with our silent conversations of what can be understood and not stated.

But what if we have to?

I know it's not for everyone, but theological opportunities can provide a foundation and a code that allows people to get through the emptiness. Granted, not every religious person (or therapist) has a working knowledge of the effects of Parkinson's, but they do know the effects of aging and the loss and pain that goes with that. Sometimes, it's good to have alternative avenues for discussing these things to keep home happier. As I said, therapy can also do this.

For me, early onset Parkinson's offers many challenges. I would say the biggest one is finding a meaning for my life.

Having taught for 17 years, I chose to give up the classroom in May. I often wonder if I could still be in the room, but then I think that at some point in the future, the time will come when I can't. I know there are things I could still teach, but at the same point, a nearly 3 hour class is a long lecture, individualized instruction time, class management, and a lot of what ifs as well as moving parts.

For me, management is the first skill to go. With shaking hands, how can we be seen as serious in instances of redirection if we're shaking? If we're shaking, is it because we're uncertain about our field? If students know we have Parkinson's, will they think of us as mentally dysfunctional if we forget something? Will our bosses think this? What about our co-workers?

As with any job concern, it's often understanding how we're perceived that is the issue.

For me, I know what I can do and what I can offer, even if my blank, unsmiling face doesn't show it and my occasional exhaustion prevents me from looking confident in my game all the time.

Because of this, it is in those type of moments of doubt that I (and we) lose our strength in all things.

In the Navy SEALs, there is a bell that recruits can ring if they choose to quit. Many times during the intense period known as Hell Week, this happens. The exhaustion, suffering, intensity, and pain get too much and people's minds and bodies give up. They wave the flag, and after being asked if they're sure, they usually say yes. Stories abound regarding ones who chose to come back for another shot. Even if they come back, eventually, they always quit again. Once their mind is made up, it's over.

I think this applies to anything in life. Thus, the question becomes, "how, when we're tempted by doubt and defeat, can we regroup before we get consumed by this enemy?"

I'm not sure I know the answer. Like you, I am tempted by a lot of bad stuff. None of this is fun. Like you, I am physically, mentally, emotionally, and financially tortured by this game. I hate it, and I wish I could be magically cured so that I can be non-Parkinson's Dan (whoever he was).

That said, I know that's not real. For that reason, I push on with how some of the answer is to stay loose and stay positive. I know that it's important to never let anyone "steal your sunshine." It might sound odd to say, but if you're holding the wolves at bay, even if you're in the dark about what comes next, you're in a better place than someone who is thinking 3 stages ahead and living scared. Yes, we're all afraid of the end stages, but we're not on a timeline (I tell this to myself, too, so that I believe that), so live for the good times and shake off the haters (Dan, this means you, too). We have to believe that there are good times ahead and positive moments to experience.

There has to be a reason for this.

Mike, my therapist, and I discussed this. We talked about staying a "teacher" even if I'm not in the classroom. In this, I can write my lessons as essays, which is easier than speaking them. People can read them and learn from me. I like that. It's something that keeps me going. It's why I do this whole blog thing (since I'd like to believe that I have something to offer).

Another important step is counting the little things that go right instead of multiplying the bad things. It's been kind of rough around the campfire lately with seasons changing (that seasonal affective disorder thing, allergies, the looming future, and aspiration pneumonia fears after previous hospitalizations for chesty stuff that didn't get better). Is much of it unrealistic? Most likely. Is it real in what my mind is telling me? Yes.

Do I need to find the strength and happiness to keep from going under? Definitely.

Do I need to push aside my unrealistic excessive thoughts of how I look, thinking I'm a walking case of Parkinson's 24/7? Hell yes.

Sometimes, just the simple act of writing it is cathartic. Never surrender.

9.11; To all Those who Sacrificed, Rest in Peace...

When the planes hit on 9.11, we were all some place with someone. I was in a 10th grade English class going to a 9th grade English class. I was 30 years old. I will always remember where I was since I will never be the same, nor will my family, neighbors, friends, co-workers, students, and random passers-by at the time. That day, 9.11 changed all of us. Even if we wanted to be the same, we were now new people in a new world.

Everything before that day is 9.10. It's a moment of innocence. It's Gary Condit's political crisis and a lot of news that doesn't matter in comparison to the next day's news.

Everything on 9.11 is just shock and sadness. It's an outpouring of unstoppable emotion.

As for 9.12, that's a day of anger, confusion, and imminent change. Who we were versus who we are versus what happens next. It didn't take long for the roadside t-shirt sales places with pictures of patriotic images and death calls for Bin Laden to go up. Looking at it now, in this partisan world, it seems absurd, but at that time, it was a way to work through the Kubler-Ross stages of death.

The moment is the denial of what our eyes see. The next day is anger. The next 3 stages are bargaining, depression, and acceptance.

The stages of this process is who we became as we moved toward October 7th, when America went into Afghanistan. Then came Iraq and the debates to go or not go. I remember reading how John McCain supported the Surge because it was a cause that would cost too much to lose. Here, I agree with the support of that. What happens if we give up? Lose? Don't fight until some real moment of "mission accomplished?" I'm not smart enough to answer that, but 17 years after 9.11, so much of that day is still so real and it's still so scary.

THAT SAID, let us temporarily forget that, though, and think of those who died and fought to save America and Americans on that day and all those days after it. They are the heroes and casualties of this day 17 years ago.

One of my favorite singers, Jeff Tweedy of Wilco was with his young son Spencer on the morning of 9.11. Instead of taking the buildings, planes, and death all in at that moment, he chose to play with slot cars with a 6-year old kid. There'd be enough time for the other stuff later. It was a beautiful father / son moment, with the wisdom of age knowing "sort of" what's next and a kid who needs to be sheltered from what he will never truly fathom. Then again, how can any of us make sense of that terrorist act / mass murder?

This temporary coping action reminds me of an Asian movie I watched in 1994. Chow Yun Fat and John Woo made Asian action films awesome, so I went to watch this movie, whose name I can't remember. The point was that there were all of these gangsters holed up in a safe house. Essentially, they were waiting to be killed. Instead of being sad, they played games and lived life with happiness and laughter. Wanting a solid action movie, it didn't make sense to me then, but thinking about it today, there is something in it that speaks of mindsets, which makes sense.

How many people, on either side, are still fighting that war? What will stop the engines and just let us be a people again? I'm not saying to naively stop fighting or staying on guard, but why does either side want this war without end anymore? With the White House even making themselves ready to negotiate with the Taliban, the question hovers for all of us.

One of my favorite journals to have students write was "Where Were You on 9.11?" Today, it's fair to say that a good deal of freshman college students have no memory of the day since they were in the womb or in diapers. A larger part of the population has no memory of the date anymore. 

Alan Jackson "Where Were You When the World Stopped?"

Even those of us who were there and affected with tears and anger find our memories growing hazy. It's something about the mind's coping mechanism. Really. It's called the Trace Decay Theory of Forgetting.

Additionally, I would say that if you aren't at least 25 (maybe younger, most likely older), you have no memory of the day. At our early ages, we don't have the power to remember completely, knowledgeably, and eternally, let alone process what happened on that day. If I think of my earliest memories, they're remembrances of memories. For instance, I remember Star Wars commercials before the movie in 1977. I know what I think they were, but were they?

If you were at a school like the one I taught at that day, your television was ordered off after about 10 minutes, if it came on at all. I remember watching a building falling. This would have been the South Tower. About a half hour later, the North Tower fell.

Today, I have no interest in watching that replayed. I don't want to see people jump to their deaths or think about box cutters. I don't want to rewatch The Path to 9.11 either (I thought about it, but politics are depressing me something fierce, so no... I'm also holding off on the Woodward book to focus on my own books and the one to come). 

If I want to cry, I just watch the following video from 2:48. A very well done documentary that features the daughter of a 9.11 pilot and how the Yankees (especially Derek Jeter) helped her cope with her father's death. And yes, I did watch that, and I cried my tears for all of these memories.

At some point, we all have to cope. It may not be pretty or preferred, but we have to do this to go on living. Wilma Derksen is featured in Malcolm Gladwell's David and Goliath for discussing how she came to accept her daughter's abduction and murder. It's a story that sends chills. Somehow, they forgive the killer / rapist in order to save themselves. Their story speaks for everyone suffering an unspeakable atrocity.

This doesn't mean that some form of punishment / retaliation isn't necessary. Even St. Augustine recognized the need for a JUST WAR. It just means that at some point, our meaning of the day will change, and enough will have to be enough. We saw this even in World War 2.

Students of history, like me, will still remember Pearl Harbor, D-Day, Kennedy's assassination and other events that we weren't there for. We'll think of what they meant. Being a Northerner, I don't remember when South Carolina seceded (December 20, 1860, it turns out). I don't remember when the shot was heard round the world.

Nevertheless, at some point, all Just and Lost Causes have to reach a point of finality. This doesn't mean to sacrifice our memory of the Just Cause's reasoning and necessities, but rather that we have to realign how we handle situations in the now to not sacrifice the present and future.

I used to believe this day should be a national day of mourning, but I'm not sure what I'm thinking today other than I watched the baseball video above long enough to cry. I wrote this. When I'm done, I'll look at today's other news, eat, and write my book.

However, just like many of you, I'll think about what I should never forget since we're still smack dab in the middle of so much of a never ending war on terror that would come with this heinous act inflicted on innocent American lives (as Bush told us we would be). I know that now is not the time to stop remembering, but I'm thinking about adjusting how I remember.

That said, historically...

9.11 Fast Facts

Deaths in the military since 9.11

Cost of the War on Terror

Benghazi by the numbers

The men responsible for the Innocence of Muslims video - tied to Benghazi, though Al Qaeda used it as cover to attack

Things to Remember about 9.11

9.11 effects on stock market

9.11 Effects on Airline Industry

Terrorism in America since 9.11

Al Qaeda attack on Britain

Ryan Adams "New York, New York"

At the end of the day, my friend Karen posted this, so I'm using it here. I think it says a lot.

Seventeen years ago tonight, thousands of people in this country went to bed with their loved ones for the last time. Some were excited, looking forward to the trip they’d be taking in the morning. Others were perhaps dreading the usual commute to work. How many of them were rushed the following morning? How many didn’t make time to kiss their kids or their spouses? They mumbled a quick goodbye and headed out the door…not knowing it would be the last time they’d see their loved ones.
Tomorrow is promised to no one. Take nothing and no one for granted. Tell him or her that you love them. Forget the diet and eat the cookie. Make love. Stay up late. Apologize, even if it wasn’t entirely your fault. Forgive, even if they don’t know what they did was wrong. Laugh. Cry. Scream. Go for a walk. Find shapes in the clouds. Do something nice for someone. Let someone do something nice for you. Stop waiting for things to happen. Get off your ass and enjoy life. While you’re at it, help someone else enjoy their life as well. ~Jim Cobb
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