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.

Randal "Tex" Cobb Blues

            Many people with Parkinson's are encouraged to participate in Rock Steady Boxing (and yoga, dancing, active hobbies). The point of this is to increase strength, decrease rigidity, gain balance, achieve confidence, and meet friends. People come from a wide variety of places and backgrounds to participate in hitting the bags. At no point in this endeavor are people encouraged to go medieval on one another, let alone reenact Mike Tyson’s dinner reservation with Evander Holyfield. While taking fist to leather relieves stress and frustration (an added bonus), it’s not meant to mimic hurting another person. It’s meant to give us a path away from sadness by putting us in control of our own set of interactions with Parkinson’s.

            First and foremost, at all too many points in the lives of those people who have it, Parkinson’s is a cheap-shot “heel” from pro wrestling, who doesn’t play its game fair. For others, PD plays the role of the superior heavyweight champion. Knowing what we are up against allows us to prepare our fight against its.

            Take Randall “Tex” Cobb, who went fifteen rounds with Larry Holmes. He lost by decision, but he never went down. To me, he is the ultimate “Won’t Back Down” metaphor.

            We see this in injured runners like Derek Redmond or softball players like Sara Tucholsky. 

I saw this when my wife pushed herself 2 miles through the desert after an ACLinjury. All of these people were aided by others, but isn’t that life? We need other people. What’s more, if they can, I can (or at least come close).

1.      To understand the Tex Cobb Blues, we must learn that there are no trigger warnings in life. Parkinson’s symptoms will make you and yours cry. We can choose how to approach them, but things like incontinence, cognitive issues, and loss of independence are coming for many of us. We need to be ready for them. There’s no rug to hide under when the freezing hits town. If we follow Tex's advice, we train to hit back and take the pain.

2.      In between the rounds of our life, we can go for hugs, high fives, and encouragement. We need love, respect, and appreciation. Our caregivers are huddled as a team to keep us moving. Their empathy is a great thing. People need to be in our corner rooting for us. We need to be in our corner. If we can balance the need for strength and the ability to let out our emotion, we'll be OK.

3.      We need to fight this fight round by round. This means, our game is to focus on today instead of worrying about tomorrow. I can’t say if the aliens from Independence Day are coming tomorrow or not, but I can say today is a nice day, so I should smile and enjoy it. Remember, the best revenge is living well.

4.      Remember that line in Caddyshack where the judge tells the grandson, “You’ll get nothing and like it?” Well, that’s how PD talks to us, except it's not funny when PD does it (goll dang, Ted Knight and Rodney Dangerfield were great in that movie). We can’t ask it to be gentler since it’s not listening. It’s coming to take our hobbies away. It doesn’t bargain. It just does. Thus, if you can find interest in playing cards instead of swimming, do so. It’s all about how we see the hand we’re dealt. 

5.      When I went to Basic Training, the first thing they asked us was, “Who has promises in writing from a recruiter?” If you didn’t, you were out of luck. Just like in Disney’s Up, we have our Adventure Book. What we do with it when life gives us lemons is up to us. Thus, I want to go with my wife to Bora Bora someday, but there is no guarantee. I wasn’t promised a rose garden in writing, so maybe I need to go out of my way to enjoy the petunias, daffodils, mums, and irises that I find along the way.

6.      Not every round is going to be pretty. In fact, there comes a point where we're going to hate and resent it all. There will come a time when we’re not going to listen to any more medical advice because we're sick of being diagnosed with some other co-morbid condition or be told that we need yet another medicine that will affect our mental / cognitive / behavioral life in the name of controlling some other symptom or condition. Here, there comes a point when we need to vent safely (scream at an inanimate object, hit a punching bag, journal, etc.). That's OK. It needs to come out. Sometimes, we’ll be like the crew in Apollo 13, stripping off sensors to exert authority as we refuse a test or procedure. For Jim Lovell's moon landing crew, that makes sense. They're stranded in space, unsure if they'll land. Who gives a hoot about vital signs when they have to get through lottery odds to have a shot at re-entry. While the team of doctors at Houston freaked out, Ed Harris' team leader let them vent. It was a very human understanding. Get it out, and get on with life. Like them, we get sick of being prodded and poked and analyzed objectively and subjectively. We see the final conclusion, so we choose to do things by expressing our own dignity. Many times, it's just momentary frustration; however, sometimes, it’s just refusing to be another medical condition in an endless stream of conditions. Remember, it’s not quitting if we’re committed to what we believe in, even if it’s only parts of the whole. That said, before quitting, ask your doctors for advice. We can't just pull ourselves off of some meds.

7.      If you’ve got energy left, then it’s possible to win the match. Muhammad Ali didn’t win his fight with Sonny Liston until the end. Our cure isn’t coming this month, but we need to hold on for when it does. Until then, we’ve got endless potential. This, to me, is the story of Camus' Sisyphus. If there's a possibility, there's hope. Set yourself up for a chance to win. Just like in NASCAR, a racer can lead the most laps, but the only lap that counts is the final one. For this, Trevor Bayne will always be a past Daytona champion.

8.      Remember, even if you’re giving Parkinson’s a what for and you’re wondering why badthings happen to good people, then just remember Samuel Beckett was right. “Ever tried. Ever failed. No matter. Try again. Fail Again. Fail better.” There is always hope. Don't lose faith in your philosophy / theology. Find meaning in the suffering. For me, that's sharing my story. Like Cobb, I'm taking the hits, but I'm still standing. I don't like the other choice.

9.      What’s more, there’s still a lot of love to give and receive. If you can still express and feel love, then you’re still alive, no matter who is winning the fight.

10.  In the end, it’s not about being tough 24/7. Nobody can play that game. However, by confronting the reality of what we’re up against, we’ll know how to fight it better. Remember, if you need help, there are plenty of people who are willing to help you (in real life, online, and around the corner. Keep believing! I'd like to think that's what Cobb felt when he transitioned from boxer to actor in Nicholas Cage's Raising Arizona.

Keep your guard up and swing back whenever you can!

"You Are All A LOST Generation" / When "the Pursuit of Happiness All Seems a Bore"

RIP to all those who have died from suicide. This is for you.

After World War 1, Gertrude Stein told a bunch of writers, to include Earnest Hemingway, that they were all a "lost" generation. The war had done them in. They were now trying to find meaning in France. They did this with a lot of alcohol, deep conversations, and a completely new way of expressing their ideas through various art mediums. 

As for, Gertrude Stein, she was trying to find meaning in these men. Alice B. Toklas was trying to find meaning in Stein, but she didn't know how to express this, so Stein wrote a book about how cool she was from Alice's perspective. In the end, they both felt like hanger-ons (Stein with the talent, Toklas with the wives). 

Some people will say that the book was a literary achievement. I rank it with painful works like Melville's "Bartleby the Scribner" and Trout Fishing in America by Richard Brautigan. After reading the latter, I asked my English teacher, who told me to read it, what it was about, and he was as clueless as I was. Simply put, I think it was a bad drug fantasy that made less sense than William Burroughs' Naked Lunch. The latter was at least a walk through the dangers of heroin, though in a very sleazy crime, sexually-violent kind of way, which is cool when we're young (I read it last at about 25). This couldn't be said for Brautigan . Fortunately, I resold both of those books. 

Then, there's Catcher in the Rye, which I would have loved at 16, I wanted to feed Holden Caulfield to the sharks when I read it at 30. If I read it now, I'd be the old guy telling him off for being so full of his self righteousness. To this day, it's the only book I taught that I couldn't finish, which says something since I also taught Nicholas Sparks' A Walk to Remember to atone for teaching 1984 to the girls in my 10th grade class who hated it (I will admit to liking some of his movies).

I just can't put Stein with great characters of the time like Joe Christmas in Light in August or Daisy and Gatsby in Fitzgerald's work of the same name. William Carlos Williams gave us Spring and All as the writing manifesto accompaniment to the riot ballet that was Stravinsky's Rite of Spring. TS Eliot provided The Love Song of J. Alfred Prufrock ("in the room the women come and go talking of Michaelangelo"), and Pound put his own touch on The River Merchant's Wife ("I desired my dust to be mingled with yours"). 

But Stein gave us 2 things:

1) A woman who sat back and watched. Perhaps the hidden sexuality is the trick here, but even then, Toklas is empty. It's not like little girls want to be her or we would be celebrating it now like I did with other female lives. It's not like she's breathing open sexuality like Anais Nin did. If I'm missing something, please tell me.

2) The name of the literary group and the quote about "The Lost Generation."

From this post WW1 generation we got a lot of sadness and pain. When he wasn't talking about bull-fighting, tying flies for trout fishing, drinking wine, or crying over how Lady Brett loved  but couldn't love Jake Barnes (his "problem" turned her into a woman who couldn't date him, but still confided her dalliances to him), Hemingway wrote short stories like "A Clean Well-Lighted Place:"

Turning off the electric light he continued the conversation with himself. It was the light of course but it is necessary that the place be clean and pleasant. You do not want music. Certainly you do not want music. Nor can you stand before a bar with dignity although that is all that is provided for these hours. What did he fear? It was not a fear or dread. It was a nothing that he knew too well. It was all a nothing and a man was a nothing too. It was only that and light was all it needed and a certain cleanness and order. Some lived in it and never felt it but he knew it all was nada y pues nada y nada y pues nada. Our nada who art in nada, nada be thy name thy kingdom nada thy will be nada in nada as it is in nada. Give us this nada our daily nada and nada us our nada as we nada our nadas and nada us not into nada but deliver us from nada; pues nada. Hail nothing full of nothing, nothing is with thee. He smiled and stood before a bar with a shining steam pressure coffee machine. 

Nothing like a little nihilistic meaningless in the evening, eh?

Thinking back on how that group transcended and eventually became the generation before mine, it makes me wonder how revolutionary it was for the Rolling Stones to talk about "happy" pills in "Mother's Little Helper." Even today, with regard to the existential dilemma of how "the pursuit of happiness all seems a bore," this song just runs counter to the idea of free living and joyful obtaining. Nevertheless, for every couple at Sandals (like my wife and me), there's someone crying about needing to get back to reality and his "routine."

Really. We encountered one of these people.

Talk about First World Problems!

I come from the generation that grew to love Kurt Cobain. Kurt, who took Hemingway's nihilism and found a social / political rebellion with it as he exploded onto the scene, is said to be the last rock star, and in some ways, that's probably true. For people my age, he made us feel our problems needed expressed (and they should be), but other than the cathartic release, he never provided the answer. Instead, he married Courtney Love, and well.... he died by his own hand (by the way, I am fortunate enough to have seen Nirvana in 1991 before "Smells like Teen Spirit." They were that good).

So it goes.

Now, in the years since then, a time that our angst and ennui has been expressed in a myriad of musical and literary ways, so many of us are part of a "DEAD" generation. We lack interests. We struggle to find meaning. We consume instead of create. We see no end game. We're just alive, eating, breathing, bathrooming, sleeping, and drifting through this world (this is all generations - not just the younger ones). While this isn't all of us, it's all too many people. It's like we've moved beyond even the ability to even be an absurdist hero in this life. Instead, we drown in our own inability to talk about our interests / things you should know about us (I was surprised how many people had nothing to say about either of those things on night 1 of a class). We're not even riding shotgun. We might as well be lying in the trunk.

As for talking about our interests, if we can't do that, then what can we do on a much more intense scale?

I take this problem for people my age and younger back to the era of Kurt Cobain since it's my era (I'm sure I could take it back to ancient Greece). We were all searching for something. Those were some good times, and I'm happy to be a part of Generation X and the "Grunge" era. It was amazing to live in England during that time. It made me who I was and some of what I am.

However, in wanting the dead body in his house not to be Cobain's body, people like me missed the point. Here was a man who was struggling with serious drugs, who was surrounded by a world that was crashing all around him. Instead of trying to help people like him, who were filled with problems, we just mocked Courtney Love for her entire existence and her public response. Only Eddie Vedder put things into perspective while expressing being ground up in the public eye / fame machine with his "Messiah" quote. 

Seeing as Katy Perry is now a "joke" to so many, we've learned nothing.

As for my generation, it defined my place in culture, music, literature, and day to day life, but as all "fun and carefree" things are, it was fleeting. Sure, I'll remember places, people, and concerts, but did it truly define me to be able to be married, be a professional, own a home, recover from my mistakes, or survive a situation like Parkinson's? Sure, in some ways, it expresses me and some of it did help me, but is it the deeper part of my life? For all of the people I know who made it out of their "generational" world intact, they redefined themselves right after it. Like King Henry IV, Falstaff has to go. There is leadership and maturity, as well as purpose, waiting for us - if we grow up and leave the empty and temporary things behind.

Nevertheless, as we move beyond our emptiness, we must leave others behind. Sadly, along the way, we will watch our heroes die, not of old age, but their own hands. Like Kate Spade and Anthony Bourdain, the history of depression and meaninglessness has led to many casualties. Kenneth Rexroth, a Beat poet, explains it well in "Thou Shall Not Kill."

As time goes by, more names make this list as they die by their own hands, too. Other young people feel so nihilistic that they hurt others before hurting themselves. I'm not here to go political on this, but I want to know why this is as something more than latching on to a cause to find "so called evidence" to advance their own other cause (no more guns, violent video games, dangerous meds, mentally ill people running around, rock music, capitalism, low church attendance, or any one of a number of things). 

Instead, I want to do my part in helping people find their own peace, their own enjoyment that doesn't hurt others, and their own place in time. I'm not here to sell them mine.

I don't want to get into the politics of this other than to say, "What can we do to like ourselves, enjoy our lives, and do meaningful things? What do we need to do to realize life is about community?"

This isn't an economic or theological concern. This is about realizing we're all on the same team as a people concern. This could be family, friends, coworkers, neighbors, or random acquaintances. Life is about respecting ourselves and others. By any means necessary, let's do better.

Martin Seligman - positive psychologist

So yes, as society sees two more high profile suicides (Kate Spade + Anthony Bourdain), we are asked to think about several issues. Here, I feel compelled to state a few things that I feel for you:

A)    If you know someone who needs help, be there for him or her as best as you can. 1-800-273-8255 gets you the National Suicide Prevention Hotline. CNN has an article on what else needs to be done in addition to just making a phone call.

B)    Encourage people to get professional help. Provide them with empathy.

C)    I IMPLORE you to learn about the side effects of your medicines. There are lots of nasty ones out there. See THIS LIST. If you don’t like what’s going on, from a rash to behavior that is unrelated to who you are as a person, you have the RIGHT and RESPONSIBILITY to DEMAND something new. Please check out articles LIKE THIS ONE by Susan (Robin’s wife) Williams. It’s big and it’s scary, but it says things we Parkies (and other people with conditions) need to confront (even if Robin didn’t have Parkinson’s, Lewy body dementia is close enough). Additionally, other people need to be able to talk to you about these effects. Please open up the best you can.

D)    Anoint people in your life as something more than caretakers. I may call my wife the CEO of my Brain, but she is also on my living will. That's more real than a clever nickname She gets to make legitimate medical decisions if I can’t. My parents are the Board of Trustees of my Brain. Between the 3 of them, they have the right to consult together on my behalf. I have given them the right to discuss things I may not be aware of (though I’m usually really good at acknowledging all things, I sometimes can’t see everything). My job is to sit down, shut up, listen, and think about what I'm experiencing and what it could do to others.

E)     Many of us with Parkinson’s (or other conditions) have issues with serotonin to go with our dopamine problems. We’ve seen dark days because of biology playing its cruel hand on us, as well as life issues that multiply this, but we moved through them to be here today, even if it hasn't  been pretty. We have our scars. Some of them were self-inflicted. Others are emotional. The point is, we need to acknowledge this and work toward better solutions. Sometimes, it all begins with a "you're OK, man." Whatever it takes. I've needed to hear it and say it. Remember, we've all been there.

F)     One solution for people in need of better living through chemistry is to push for anti-depressants with less harmful effects. Some people self medicate to avoid these effects. I'm not here to judge that, but if we can make an iPhone whatever, can't we do better here, too? Research meds in a scholarly way on scholarly sites. Don't rely on my advice to say, "Oh, don't take X. I got Y from that." Yes, it may be true, but my body is really sensitive to some meds. Yours might not be. While chat rooms are beneficial, rely on professionals. I may have learned about my condition, but I'm not a medical expert (neither is Jenny McCarthy). Talk to your professional about it... not your neighbor.

G)    Another solution is to live by positive psychology, philosophy, theology, and / or whatever values make sense to you (in addition to medical treatment). As I stated at the tops, there’s a lot of negativity out there. When people lose meaning in their lives, then what? The point is that when we do things that create purpose, be it cleaning trash off a trail, painting a picture, teaching a class, or any other process that makes the world better, we’re doing what our deepest self likes. Be this D.H. Lawrence, Dan Pink, or Sonja Lyubomirsky, it’s all good. Just do things that you can enjoy (and don’t help other people) and things that you can be proud of.

H)    In the end, you don’t have to feel ashamed to get help. Share your emotions. Work toward your solutions in a multi-pronged attack. Don’t expect overnight success. Just keep moving no matter how long it takes. If you have to cry, cry. If you need a hug, ask. Just keep moving, however slowly. Don't let medical stigma hold you back. You're a good person... whatever it takes.

I)       Just because the person you are / the people you know who feel these problems don’t design handbags or have extreme television shows doesn’t mean they and / or we aren’t as important as Kate and Anthony. Every loss we take is a bad one. People who shuffle off this mortal coil, like those who live on it, are beautifully imperfect. We all have our faults, but we also have a journey that impacted others for better or worse. Don’t ever forget that or how important you are to someone. Whether it’s a spouse / friend / relative / co-worker / me (after all, you support my writing dream / Parkinson’s advocacy by being here). You make a difference. Find a way through. You got this, as Mo Onstad would say!
J)   Or as Winston Churchill said, "We will never surrender!

K) Last but not least. Life is funny. The things we misspoke on, the things we never thought would happen to us, the medications we once stigmatized / didn't understand... yeah... things have a way of coming back to us double. This isn't a punishment from God, but I will say the universe has a terrible sense of irony. My life is living proof (beefcake, beefcake)! Nevertheless, learning helps us and others. Make your life work.

Surviving Avalanches - Cory Richards, Alive Day / Diagnosis Day, Big the Musical, and Wishing for Younger Days

          Cory Richards is a mountain climber and an adventure photographer, who was also the National Geographic Adventurer of the Year. He has definitely had lots of extreme experiences with the wild and the life-altering, especially a 2011 trip to Gasherbrum II in 2011, when an avalanche hit him and his two companions like a “freight train.” All of them survived, but they were dramatically changed by that one moment of their life, which wracked  his entire life from then on out. 
            Just like in the military, when a person is severely injured, but is saved, this would have been his Alive Day. There is a great documentary with James Gandolfini, which is available, or you can watch this short video to understand the concept. Of the people in Alive Day Memories, my favorite was the story of Bryan Anderson, though they were all powerful.
            For Richards, after regaining where and who he was in that moment of "how the hell am I not dead," Richards took a selfie (it's at the top). In the moment when his fellow climber dug him out from under the snow and ice, he felt he looked like an old man. What had previously been the first successful climb of an 8,000-meter peak in winter by an American was now a catastrophe of legendary proportions for 3 men who desperately needed to get back to safety.

            However, it was also a lot of other things since it was also Richards’ introduction to post-traumatic stress disorder, a condition that would affect his entire life from then on out. If you're interested in learning more about this, check out Laurence Gonzales's Surviving Survival book. It is that good.
            This nightmare condition would lead him back into facing his own demons, the beasts he was trying to escape from his entire life, by taking part in these high-octane pursuits. As PTSD raged inside of him, depression, divorce, alcoholism, and loss of purpose all affected his life, but somehow, he found a way to navigate through his present by taking steps to figure out his past, present, and future.

            I had never heard of Richards before I read his story in Outside Magazine this month. When I got through the story (on newsstands now), I felt blown away by the power of his life story (available as 3 clips starting here - they take about an hour, but they're worth it). The thought of how a person can look at him or herself and say, “I should have died” / “I’m not the same anymore” / “I don’t recognize this person staring back at me” / “I’ve got this thing inside me, which is just like death because it’s crawling around and trying to kill me and I can't get rid of it” is incredibly human and fragile, no matter who we are, but to try not to be broken and to not hurt anymore, well, that takes something more, and that frail nature is exhibited clearly in the video. 
            I should also say that despite the climbing world's usual bravado, Richards feels very approachable and vulnerable. I really liked this in all that I've seen of him.  

            As I’ve said before, I’m very interested in stories of accomplishment and survival as well as stoic philosophy (since they're what I want for me). There’s something very empowering about recognizing that we have been handed a role (like Epictetus said) and have to play it to the best of our ability. We alone make our choices to drive ourselves to the peak of our journey or not.

            I don’t believe that we always do it alone. We do have the option to choose our teams, and with the universe in the right place, we will find strong people to help motivate and carry us through to strength that we can get up again. If we don’t have these people, being a solitary man is a long journey not worth taking (see John Donne).

            I also should say that I do believe that the universe provides fail safe methods that allow us to get out of situations. We may not like them, but they’re there, and for the humble pie we’ll need to eat or the 3 steps back we might have to take when the poop hits the fan or we mess up, we can eventually find a way to move ahead 4 steps over time. The key is that we recognize these things as they come and don't give in to them. Here, I think of a story told to me by a person about his son who got out of jail and was picked up by a priest who wanted to give him an apartment, job, and a key to a new life, but the son refused. Which part of that moment doesn't show divine intervention to be in a better place?

            I guess for some people, it's all about going on their own journey until they find the next moment of clarity that appeals to them... maybe Player's club, an attractive spouse, more money than Rockefeller, and international fame instantly. 

            Finally, I acknowledge that education and mental preparedness in temperament and ability is the best thing that we can do for when our own avalanches hit. We probably won’t get caught in an avalanche unless we decide to do winter hiking or climbing, but we will definitely find a train barreling down the tracks to mess us up at some point in our lives. Loved ones will get sick and die. Jobs will come and go. We will get old, and with that, we won’t be able to do what we used to do, even if we don’t develop conditions like what afflict many of us. It's just a part of life. Natural disasters will take place. People will mess with us, either intentionally or unintentionally. Systems that operate in chaos will break down in the fraction of error moments. Some days, we’ll be in the money, and some days, we’ll need a new dishwasher, so there goes the vacation money.

            For people with Parkinson’s and other conditions, we have faced the moment of discovery. Like people who hear the C word in a diagnosis, there is a moment of clarity that a huge sheet of ice is crashing down on us or that a flash flood is about to leave the world under water. We have been given official notice that something is going on inside. And it’s going to get worse. And it’s going to change our life and the lives of all of those people that we know.

            What the heck do we now?

            One of my favorite posts in the groups that I’m involved with for Parkinson’s once did was a post on when, where, what was your first diagnosis of Parkinson’s. It was a very human and beautifully tragic expression of our shared experience played out in different ways, on different stages. To that, I ask what was your moment of official confirmation like?

            For me, I had been playing the part of a man on the path to what I thought was going to be surgery for my cervical spine issues. This was that “spondylosis” was the cause of my tremors, and it“definitely was not” Parkinson’s (I'm glad I was misdiagnosed; I wasn't ready for the real diagnosis in 2015). To get to another MRI, I had to go through the spinal surgery people who told me that I had to go to physical therapy first (since it was a year and a half after my first time in the box). However, at the first PT appointment, I had a therapist who said my tremors definitely weren’t caused by spondylosis. She couldn’t tell me what they were since she wasn’t a doctor, but she did get her doctor to refer me to a neurologist named Efrain Perez-Vargas. To this day, I'm very grateful for her forwardness. She changed my life. 

            On September 27, 2016, I sat in the sterile hospital room at Reading Hospital, complete with its disinfected hospital smell, sitting in a simple classroom type chair next to my wife waiting to do what I had to do to play the game that would allow me to do my surgery over Christmas break. I was sure this is how it was going to go down. This appointment was just a formality.

            I’m not an expert with a degree, but I knew. Yep. I knew.

            When Dr. Perez-Vargas came in, we did the motion checks, finger taps, walk, and other bodily functions, and then he asked me if I knew what was going on. I responded that I didn’t.

            “You have Parkinson’s. I’m 90% sure. We’re going to do an MRI and blood tests to find out for sure.”

            I sat frozen in place. I only knew that Parkinson’s was Michael J. Fox, Mohammed Ali, and tremors. I didn’t know anything else. Instantly, I wanted to google search what else it was, but before I could do that, my wife broke out in tears. I tried to comfort her, but it wasn’t easy. Why would it be? She knew more about what it was than me.

            As I sat there in my internal stare, holding onto her, the doctor said that I would be OK based on how I was handling it, which apparently meant I wasn't crying or freaking out, but rather taking it in. Other than that, I’m not sure how I was handling it. I was really just dumbfounded. I would have known the ramifications of the C word or many other conditions, but not this one.

            He went through the discussion about how this wasn’t a death sentence and how there were many medical treatments being looked into and already done. He also talked about how some Parkinson’s doesn’t advance as quickly ("vanilla," he called it), but that I should stay active and we would find out for sure when my results came on November 1, 2016, that this was what it was.

            At the time of the first appointment, I didn't get medicines because I wanted to be sure before I started. I can't say there was any more logic to it than that, but at the time, it made sense.

            As we left the office, I told my wife Heather that we would make it through this. We always do, no matter what happens in life. She was still teary-eyed, but she was better. From there, we went to my parents’ house to tell them what was most likely going on. They, too, didn’t know much, so I had to tell them what I had found out, and we went into the mode of, well, here we are, all straight-faced. Let’s go on. Over the next month, I would tell other family members and friends as well. It wasn't fun because everyone started to learn and ask, "What's going to happen to our son?"

            I took my wife back to her car so she could go home from the doctor’s (we had driven separately to get there since we both came from our jobs), and I told her that I would be teaching my class that night in abbreviated form (in about an hour and a half - too late to call off). However, when I got to the classroom, I was early enough that I had time to google Parkinson’s. I went straight to Michael J. Fox videos, and I saw his tremors and shakes, and I instantly shut the video off after contemplating my future with the shakes (not knowing he often purposely goes off meds when he's interviewed to show the effects of PD to help raise awareness).

            The heaviness of that moment was a shock to my system where I realized what was coming. Combined with discussions from the Mayo Clinic, I had an idea of what was going on, but I chose to look at the videos and articles in smaller doses at first. However, I would choose to learn a lot more over time. That night, I finally hit the wall, and I needed air, so when my students (all 6 of them in the class) came in, I told them that I had a really rough diagnosis at the doctor, and that I would have called off if I had more time, but that I would let them e-mail their essays for a complete look through before they turned them in. They were really great about it and very supportive over the term as I talked to them about what was going on. They definitely made the adjustment easier.
            I should say that as a teacher, sometimes, we think only of our problems, but in the last decade, that moment where they were that kind for me and this were my biggest successes (as were my other honors students). That's what I'm choosing to remember.

            From there, I went home, and I talked to my wife while watching Dodge Ball, which was a great choice. Laughter is an amazing thing, and I can honestly say that living with an approach that the negatives in life aren’t worth the time, especially if we don’t need them (arguments, for example), is the answer to the meaning of life. Life is about living, so choose to live life. Don't dwell on the haters (advice for myself, best followed if I write it down).

            With that, we went to sleep, and when I woke up, I decided that I would be an advocate for Parkinson’s if this was to be my fate. I told my wife, and from that point, I never looked back. I would empower and educate others and myself at the same time. It was the best decision I could make, and for this, I posted my first blog post on November 1, 2016, when I was “officially”-diagnosed, though I truly consider my diagnosis on that September day.

            Now, I find myself asking myself, “How did you survive that avalanche, Dan?” What was my facial expression the moment I swept off the snow and ice to realize I was still alive, before I realized just how hard I was hit? I know that the next morning, I had a feeling of peaceful acceptance, but how was I the previous night? What are my thoughts now that I know what all is preparing to go these next 10 rounds with me?

IS IT:

“I’m going to die after I suffer a lot?”

“I’m not the same Dan anymore?”

“I don’t recognize this person staring back at me?”

“I’ve got this thing inside me, which is just like death because it’s crawling around and trying to kill me and I can't get rid of it; help me?”

There are so many options. All of them bounce around inside all of us from time to time. It’s part of this beast, but we can hold them at bay with the other choices:

“How can I stay me as long as possible?”

“How can I enjoy my friends and family and let them see me for me as long as possible (be a person first)?”

“What can I do to make a difference for others?”

Things like that are what keeps me going as I shake off my avalanche and climb back up the snowy mountain to the top of the pile.

Nevertheless, I am well aware that I’m getting older and my body is changing to be someone new in this world I have found myself in (46 in a month). I thought about this when my wife and I went to see Big the Musical (based on the Tom Hanks movie). If you’ve never seen the movie, it’s a story about a kid who makes a wish to be big, and then it comes true. The rest of the musical deals with him being able to fit into being a vice president at a toy company (easy because he thinks about creating toys that kids will like from a kid’s perspective, but hard because he has to compete with a jerk while navigating an adult relationship with a woman who is very into him). Through it, he comes to enjoy being old until he realizes he doesn’t want to give up childhood, his family, and his best friend.

As usual, the Fulton Theater did a great job with it. For a local Lancaster, Pennsylvania, production, the sounds are good and even the child actors play their roles well. As it was performed during the day so that kids could see it, they brought young kids onstage to dance with the young part of the cast before the show started. Whoever wants to, groove on!

My wife got the tickets and we were in the lower level of the Abraham Lincoln seats, which put us directly stage left. Our view was good enough to see the microphones taped to the actors' foreheads. Let it be known, I am down with the Abraham Lincoln seats.

Somewhere in the reflections on the show, there is a feeling that if kids want to be old, then on the other side of the coin, adults want to be young (and while not a part of the musical, people with disabilities want to go back to a time when we didn't have them or to live like we never had them). There are glory days to be lived again or for the first time. With all of the nastiness inside of us from the hand life has dealt us, no matter who we are, we all want to go back to get a redo, whether complete or partial, so I thought to myself, “Where would you go back to if you could?” I found that to be an interesting question since there are definitely things to consider that keep it from being an easy choice, especially if this Parkinson's was always in me waiting to explode.

1)      If I go back to youth, then I have to through junior high school again. I’d rather swim in the shark lane than do that.

2)      If I go back to high school, then I have to deal with everyone going through puberty and all of those issues. Nope, it’s gotta be later than that because even if I'm magically transformed from Goofus to Gallant, I still have outside influences to contend with.

3)      The Air Force England years (18-24)? I wouldn’t have the life experience and (theoretical) wisdom that I have gained since then, although I would have Europe at my doorstep. Nevertheless, I wouldn’t be going to see the things that jive with my older self, who would want to go over there to share them with my wife. Nope, it has to be later than that, even if I was younger, thinner, and healthier.

4)      The late twenties seem like a good time for the wisdom that I gained from the experiences I had prior to it, and I would still do many of the same things, but I would have definitely done many other things differently (like get a degree in Sabermetrics). However, I might not end up meeting my wife, so is it really worth it to disrupt the best parts of my universe on a wild card opportunity to feel the vitality of youth?

5)      The early thirties offer life wisdom, but they also offer the beginnings of the aging life. As soon as professional reality hits, there’s minimal fun due to job and / or family and / or commitments, so for the youthful vitality and lack of gray / white hairs, it becomes a choice of trade offs with a very limited time between. Also, while more of the money needed to do things is technically there, but time is the biggest constraint. Just like setting our own bedtimes as an adult, we realize that staying up until past midnight every night isn’t a possibility, and neither is cashing big checks to spend on frivolous wants and have to haves. We need life moderation, and this is a time it really needs to be figured out by.

So what’s the answer when we’re coming out of the avalanche and trying to make sense of what we have with what we want from life and where our future is and isn't and will never be headed? If we’re sitting here in the uncertainty of “how long until the rug gets pulled out from under me (i.e. if we're waiting for the inievitable avalanche),” we know we're wasting time, but how can we get away from what seems so inevitable when it's such a powerful thought in our heads? If we took the hit and ended up on our feet, how do we reconcile all the mistakes we’ve made and the times we’ve wasted to enjoy what we've got where we stand? Fretting over wasted time is such a Dostoevsky thing anyway. 

Looking at it in this way, Josh Baskin (the Hanks character) has it so easy because he gets to live out the whole thing and make his way through to discover all of the great things (and character building mistakes) for the first time. Besides, all he wants is to be big enough to ride the rides, drive a car to impress a girl he really likes, and to do the other things he wants to do in a "relatively carefree" life (though as we all know, pressures like these do affect kids just as much as adult pressures affect our "ancient" lives). In the same way, Dan the Parkie wants the time to still be able to do the things that make him who he is before his dopamine supply ends. He wants to do as many of them as he can like he used to, while he comfortably / awkwardly / uncomfortably makes peace with his past on what he can’t do or what he does a lot differently (a personal soul searching effort to accept what I can't change - either via the Serenity Prayer or Epictetus).
You'd be surprised what you can accept that you can't do without crossing personal scum lines when it means being alive, happy, and relatively healthy with positive people around you. My midlife crisis at age 39-41 was hell, but since that time, I've made peace with the aging process and who I am. I'd rather sit and purr than obsess and go negative, at least when I can control it.

This is the new normal where the first step is to stare in the mirror and hope the guy in the mirror isn’t covered in snow and ice. After that, he can go look for a beach to enjoy the calm tranquil waters of life. In the meantime, I just need to take the pieces of my story and make them into a cohesive take away line for the audience I am speaking to, even if I’m the only one listening.

It's what Cory Richards would do and does at the end of the final segment of his video.