Identity and Diagnosis

Last Thursday I sat in the therapy chair as Mike, my therapist, and I discussed my life post starting a new job / new chapter of my life (full time with excellent benefits and an opportunity to make a difference for people). Essentially, many of the worries that were affecting my future were gone as I found my way to be the me I wanted to be (busier, more helpful, etc.). The session prior to that, the out of control Parkinson's life had caught up to me and body slammed me for the first time since its defined self came into my world, but good.

In hindsight, it was good to be able to have someone to talk to. Hug therapy and stoic philosophy only go so far. That said, a gift from the universe helps, too. Sometimes, we don't know how lost we are until we hit some ugly realization of the storm we're compensating for.

Anyway, at the early October session, we were talking about maintaining identity, which is something that every single person on this planet contemplates, whether actively or subconsciously. We want to know that we are something good and existing as us, not some bull in a china shop who is brushing up against things and knocking them all around.

As a Parkie, life is about balancing the new me with the old me. Like many of you, I had a life of who I was before Avalanche Day. Today, I am a part of that person. However, I also get to be parts of me that are Parkinson's.

From the minute Parkinson's symptoms came into play, minuscule fractions of that guy vanished as the bridges and highways of my brain were affected. The infrastructure of my brain slowed down, and I compensated in balance / posture / new ways of doing the same old things. Along the way, I adjusted my life accordingly.

Mike and I talked about one of those adjustments, which was giving up teaching. As a lover of knowledge (my geeky side) and a person who values education, I didn't want to lose that sense of who I was, after all I was fated to be a teacher all those years ago when I drove through Nevada for the first time.

At that point, we discussed how writing about Parkinson's is teaching, though it feels different. I see it as more sharing the experience so you can see the road you may find yourself on. I don't lecture a room, record attendance, grade papers, or demand cell phones are turned off when I'm writing! Then again, I'm not actively guiding people through feedback or directions of how to accomplish things when I'm writing either.

Mind you, I don't miss grading papers. I sometimes miss the lectures, but as a whole, other than the individualized guided help sessions and opportunities such as encouraging students to do things like go to academic conferences, I miss it a lot less than I thought I would.

Nevertheless, I still feel a teacher's voice inside of me, just in another way and for other things.

This leads me to where I am at this point in my life (as thinking like this does you in yours). Of the things that define you, how many of them are you doing?

I am a traveler, and while I'm still driving, I'm now the Jack Kerouac to my wife's Neal Cassidy (she drives while I'm riding shotgun, but we're still On the Road). Fortunately, I had my cross country jaunts, so I can always look back on those days as an "old man with his memories." I would encourage anyone to hit the open highway to see the world. Culture is best experienced in person with history and society flowing in our veins. You'll never regret anywhere you went (only places you should have gone).

I still go hiking, but the distances are far shorter, and there's a lot of time between the hikes. I definitely need to remedy this.

In our most recent trip, last weekend, my wife and I took in the Great Falls of the Potomac on the way home from Baltimore. We had been there before, but this time we saw it in autumn with rushing waters (instead of spring colors and low water). It's a short walk down the Potomac to do all the vistas (maybe a flat mile round trip). It's very accessible if you're tempted to go, should you be in the Baltimore / D.C. area.

By the way, people with permanent disabilities can get into national parks for free.

Yes, that is a rainbow on the waters!

I'm still a writer, though I haven't found the time to write fiction or non-fiction lately (until the snow day I was on earlier this week - work let out early, though it took 3 times as long to get home!).

I'm still able to love and appreciate the sci fi / archaeology / history / supernatural stuff, but that's not a defined version of me (just an interest umbrella).

I still follow baseball, though I'm not as devoted to it as I was when I was single.

I still find time to read, the news / non fiction / fiction. However, the anxiety I feel while reading them isn't proactive to making me happier. Then again, I don't think many people are content with right now.

I still love music, though I don't really find much connection to new releases or discovering them in the way that I used to. That said, it's not like I'm hurting for things to listen to (it's just I've heard many of them before).

I still eat too many cheese steaks for my own good.

I still enjoy the random sights and sites of American culture and all that it offers to do (music, theater, roadside attractions, historical places, unique fun experiences).

But what is this to my identity?

I can't say I'm identified by a sports team. Yes, I found myself rooting for Boston in the World Series, though I would have rooted for a good game if not for Manny Machado and his history with Boston and the rest of the league. Is it enough to just be a fan of 1 sport?

I have a sense of spirituality, but I'm not someone who recruits for my religion actively and openly, let alone wearing a badge to show my denomination. Nevertheless, I feel a definite need for God.

The same is true for my politics. Being in the middle, I find it hard to know where I am when neither side represents all that I am or am not. Nevertheless, I'm open to compromise and the best of both worlds.

It would be so much easier to be Mike Pence who is Christian / conservative / Republican (in that order). Instead, I often feel like Eugene O'Neill's hairy ape, struggling to fit in. Yeah, being a bull in a china shop is never easy, but it's the lot that Parkinson's leaves so many of us.

On much of that same note, I'm not self-identified by my colleges, nor do I feel an overwhelming connection to the military, though I am who I am, for better or worse because of my time spent in these institutions. I respect people who are. Maybe if I had been on a ship or in a combat unit, I would feel closer to that post discharge place, but that wasn't my military self. Likewise, if I had been into the tailgating / football Saturday world, I might feel differently about college as a name of where I went, but for me it was just an opportunity to learn. Nevertheless, I do feel a connection to professors who gave me that chance and their individual attention.

Obviously, like many of you, I have Parkinson's, but I'm not claiming that as my identity. Yes, there are the disclaimers and symptoms, but I don't want to be defined by this (as you don't either). I definitely don't like that it robs my old interests from me!

So what am I?

Sitting down with my Office of Vocational Rehab guy, Gary, who is also a good guy, we also looked at the results of my neurological baseline test.

On the positive side, I'm still thankful for the intelligence parts, but I think about the loss of speed in making decisions and the memory parts. I think about how Parkinson's has affected my personality, and how complicated it makes things sometimes.

Tom Friedman writes about the speed of Walmart's Internet site fighting to keep up with Amazon by accelerating search logarithms in fractions of a second to keep people hooked. While we can't see loss like that in our life (because we've compensated), it shows up like it does at the Daytona 500 when cars that are a mile or 2 slower an hour than the leader are lapped over and over. Here, it's all in comparison. My life didn't notice my inability to match symbols as quickly as I should until I was compared to other people. Then, I realized that I don't have the ability to save the world with instantaneous decision making anymore.

Besides, that's what we have Chuck Norris for.

So it goes.

Thinking back to the neurological baseline test I took 8 weeks ago and all that it was, a series of tests, some challenging / fun and some seemingly impossible / frustrating. I'm sure other experiences will vary on the Weschler Test, but I will say that my time with it left me feeling a few things.

Obviously, as an intelligent person with Parkinson's who is losing / will lose his mental functioning over time, it leaves me wanting to "leave less of a footprint" on the world around me. In life, I and many other people have opportunities to impact a lot of people who we know nothing about. The acronym below is a good model for me and others to fall back on. Even with Parkinson's face and voice mixed with being in a world that is pretty Dan-centric, that is a challenge since dopamine can leave my mood fluctuating. Whether it's not smiling enough or being "snappy" at people, it's not passing a Dale Carnegie class.

Hence, I'm working on it.

As teachers / professionals / leaders / the adults in the room, people have to do a lot more to tell other people why they need to do specific things. Because the syllabus / boss / doctor / parent said so isn't good enough. If I'm doing something that challenges me in a way that is beyond my abilities, I need to know why. Even the concept of folding t-shirts into 6-inch squares and tweezing the ends to get them even (spraying them with starch to stay there) had a purpose (attention to detail is everything with lives on the line - though my ability to fold said shirts wasn't something I could use to stop terrorists). I'd like to hope I've always done this as something more than "because I said so" (for instance,  we need to learn Civil War history in English 11th grade to understand the story Gods and Generals; some people don't even know the Abraham Lincoln part of that). 

As an educational professional, I can tell you that many college majors are losing math requirements that don't matter anymore for them. Algebra doesn't need to hold people back from a job unless the job requires algebra, trigonometry, or calculus. I used to believe this was watering things down. Now I see it as creating people who can get paid to make a difference for others while financially supporting their family units (self / others). 

Here, I also feel we should be more open to questions and issues that people might have while going through the process. Not everyone is attacking our credentials. And yes, I know I have to work on this.

As for my personal areas of frustration:

On said psych test, listening to Casio beeps from the 1970s might tell if I have hearing issues, but on an ancient audio cassette, they all sound pretty similar. That said, I know I have hearing issues. I just would have liked a clearer range of sounds as being different or the same to feel like I had a fighting chance at the questions.

Listening to 15 or so pairs of unconnected words read off like an auctioneer and being asked for B when the tester says A feels like something designed to trip people up. Doing something and coming off terribly in the response doesn't feel good, even if we end up in an average or above average percentile when compared against other testers.

Hearing 10 "incorrect" responses in a row on a series of pattern questions when we can't figure out the pattern is very demoralizing. Additionally, when we're told to guess anyway, having no idea what's correct, feels like setting us up to keep hearing the response of "incorrect." Had I guessed correctly, the answers would have been worthless. That's not fun when I already feel like I have a condition that's literally causing me to "lose my mind."

A test like the blindfolded project to put shapes into a standing board with 1 hand makes a lot more sense when the OVR guy says that this is the skill that electricians and HVAC people use when they're working in hidden, enclosed spaces as compared to just the feeling that I need to do something or I'm uncooperative and venting, or prone to my own way (though in actuality, I can be all 3 things for plenty of other reasons, too).

In the end, there are times when we need to suck it up and do. Going into something that is that kind of a necessity goes a lot better with an explanation / disclaimer in the beginning than a feeling of "you're here; now perform."

My time with the test was rough, but I finished. I didn't not want to finish. Some people get frustrated and walk away. The doctor even stated this when I asked him how do other people do.

That said, a test that is for our own good shouldn't make us feel that way.

Should you take the test, I can only say this is a test of you. However, you can't study for it. Nevertheless, you can know what it's trying to get out of you. You should ask questions. You shouldn't be left to feel inferior or a fraction of yourself (like I did) after taking the test.

Take this not as a validity of the test, but rather as words of advice to the next tester, should you need to get one to show disability.

And please remember, your test scores are not your identity unless you let them be your identity.

And this brings me back to my identity now.

I'm still almost all the things I was back in the beginning of this blog...

I am a husband to Heather

I am a son to John and Essie

I am a brother to Beth

I am a nephew to Toot, Dave, Pat, Steve, and Deb

I am Big D’s godfather

I am Uncle Dan to over 20 different kids and adults in Pennsylvania and Ohio

I am a cousin and all other kinds of family related tags

I am a friend to some really great people who have listened to my story about this and been there in good times and rough days

I’m a Berks County Boy living in Ephrata, smack dab in the middle of Amish Paradise

I am an educational adviser who works hard to push people to be great while teaching them how to write well, and for this, I’ve seen some really great people I feel awesome about working with
I am the proud product of a community college, which transformed my life
I am a writer of ghost stories, Parkinson's blogs, and outdoor tales
I may write ghost stories, but I believe in God and the power of true love
I went to a Catholic college whose teachers also influenced me

I am a hiker who is active in hiking groups to include the Standing Stone Trail, which in my humble opinion is the best trail in Pennsylvania

I am a photographer

I love music from all genres, especially Polyphonic Spree and Neutral Milk Hotel

I’m a baseball fan

I served in the Air Force

I like chocolate iced donuts, cheese steaks, and pizza more than I should

I’m heavily influenced by stories of people overcoming hardship.

I have a weird sense of humor

I’d like to think I’m a good person, but I’ve done some knuckleheaded things that I wish I could undo, too
The Stockdale Paradox is my defining code.

In the end, I am me. I am working to better myself and to enjoy life without getting so hung up on the feelings of futility and sadness. Whatever that may be, so be it. That's me!

Sometimes, all I need is a little push of inspiration from a great therapist. Yeah, that session was my last one until I feel I need him again. The same is true for my Office of Vocational Rehab case, though we are going to meet up again, eventually, to discuss potential work needs or progress.

It felt good to graduate, even if it's only a chapter of my life.

Additionally, sometimes all we need is a voice for the cause... but that's the next post to come (with American Ninja Warrior Jimmy Choi and my wife Heather; yes, he really is that awesome in person).

Positive Thoughts to Handle This Diagnosis

While I was in California on vacation, I received a Facebook message from a person asking for positive thoughts on coping with his Parkinson's disease diagnosis. If I had access to my trusty computer keyboard, I could have whipped up a response in no time (I've been on this for about 2 hours, but that's not much time for a writer), but I was on the road, and yeah... typing on a cellphone isn't ideal, so I went with the simple version.

In today's world, we take for granted that we have Internet access pretty much everywhere, and when we get to those connected spots, there are computers to hook up. However, this is not true, as there are still places that lack for connection in the lower 48. Most of these places are either in the desert or the mountains, but there are also sections in places like the middle California coastline (where we were), which not only don't have cellphone connection, but they also have mega expensive gas!

And yes, before I go too far, there are towns, but they are far apart because it's beautiful on the coast, and we don't need a million towns interrupting nature when we can have lots of elephant seals instead. If you're not sure what that means, see the video below.

That said, we do need clumps of civilization in between the somewhere and nowhere we encounter across this great country. In these towns that do exist, since things have to happen, we need food and supplies, and in the bigger places, there have to be hotels, motels, bed + breakfasts, souvenir shops, and amazingly enough (since they still exist), libraries.

Prior to the message, I went looking for one of these "antiquated" libraries since I only had my cellphone and Kindle with at the time, and I needed to finish my grades (the program we use for online learning isn't compatible with my phone, and it's not always WIFI ready for Kindles in other road stretches or tiny towns). Cambria (around San Simeon) was a no go, so we went to Palo Robles (inland a little bit) instead, and I graded there (much thanks for that!).

Heading for Yosemite via Angel's Camp, I wasn't thinking I would have much luck to answer this person's message, so I was unable to type a deeply meaningful and lucid response that the magnitude of the question demanded, but I did type some things, which I hope went over well.

Nevertheless, now that I do have time, I want to compile a list of things that I would want someone to tell me upon being diagnosed. Granted, I'm a stoic, and that means I need writers I don't live with telling me to tough it up and live life the best I can with the cards I'm dealt with. This also means that I'm a feeling human, so I need people who I do live with to tell me that everything is going to be all right (and I in return need to say this to them). If this sounds like a contradiction, it probably is, but it's me all the same.

Not knowing the person who wrote me, I was humbled that someone would ask my opinion. I often think of my life in terms of the things that I struggle to do right, but I'd also like to think that I have my current attitude to Parkinson's, my marriage to my wife, and my writing as things that I do fairly well. Thus, I was empowered by his request. Additionally, his request also made me want to write this better now that I'm home.

So here it is.

1) Parkinson's isn't the end of the world. Yes, it's a progressively acting neurodegenerative disease (that's a mouthful),  but it's not King Kong and Godzilla rampaging through the city today (instead, it kind of starts as a fly buzzing around your head and landing on your face every day). What does that mean? It means you have plenty of living to do; however, you have to live this life with tremors and some other conditions that most people don't know about for a while. It's not easy to put them to the side, but you can do it. I believe in you. You seem like a good person, so you have that going for you, too!

2) Yes, someday, you'll have other issues that people will notice (and you will, too), but I can't tell you when or if you'll get to all of them. Besides, if King Kong and Godzilla rampage through the city tomorrow, it's not going to matter anyway. Life is like that. Sometimes other things take precedence, and then we need to fact up to those. Besides, we can't predict the future, so get living today (as much as you can, spending time with the people who love you and that you love). There's a lot of fun things to do in all sizes, shapes, and forms.

3) Start thinking about the bucket list. Make these things happen. Yes, you are running against a clock for how long you might be able to do some things, but you're not Dostoevsky facing the intensity of coming back from the edge of life with the heavy responsibility of living each moment perfectly. Besides, there are other options for taking on pain and suffering and pessimism. With that, even if you don't like country music, you should have / could have been listening to Tim McGraw's thoughts about life as he watched Tug's final chapters. Personally, I think he's right on. Bring on Fu Man Chu.

4) You're a great person, and you're still you. The only difference is now someone has a name for your tremors or the symptoms you presented. Stop thinking about Parkinson's 24/7 (I know that sounds easy for me to say, but I'd like to believe you can leave that at home). Family, friends, job, hobbies, and commitments outweigh Parkinson's... no matter what conditions it plants between your brain and your toes. Yes, they'll all have questions, and you'll have to answer them, but you still have a lot of memories to make and gatherings to attend. Make the most of it!

5) Stay in motion. Parkinson's is all about rigidity and exhaustion. Some people rock steady box. Others go dancing. I go hiking. Whatever you do, just do it! No hobby is wrong if it keeps you active.

6) GARY PAULSEN (Hatchet author) - “He did not know how long it took, but later he looked back on this time of crying in the corner of the dark cave and thought of it as when he learned the most important rule of survival, which was that feeling sorry for yourself didn't work. It wasn't just that it was wrong to do, or that it was considered incorrect. It was more than that--it didn't work.” 

By the way, your middle school kids have probably read this book to wire themselves tougher.

Stoics can read this quote as, "Man up. Do what you need to do. Your survival depends on you."

Feeling people can read this quote as, "Sometimes, you're going to feel like crying or getting emotional. That's OK. Get it out, but when it's done, take a deep breath and do what you need to do. Your survival depends on you."

7) Support teams are essential. Find the people who love you and tell them what you need. Listen to their advice, give + receive praise, and work together for your betterment. Sometimes they'll get it wrong, but people genuinely mean well.

BTW - Don't badmouth them and encourage them not to badmouth you when they hate on your Parkinson's in private. There is a difference, and besides, once you start belittling the person, things never stay the same (even if the person didn't hear it).

8) Everything you have learned is what you go into this rewiring with. If you're reading this early on, you have time to change before the next avalanche hits (avalanches can be anything - they are my expression for that moment when the bad stuff hits (loss of job, relationship, sickness, accident, diagnosis, etc.). Avalanche Day is your diagnosis day). The term "avalanche" comes from the Cory Richards (below) story. If you aren't wired tough to withstand the moment, then you need to find those who are and learn from them. Whether you're a stoic or a happy go lucky person, it's all about finding calm in the storm. I recommend whatever works for you. I say that as a client of myself, not a professional trainer. This woman writes about radical acceptance. 

However, if you want to know what changed my attitude, Laurence Gonzales' Deep Survival and Surviving Survival saved my life the last time I went through a bad time in my life (2011's post school job hunt days). They outline the methods that work for me.

I also recommend Victor Frankl's Man's Search for Meaning.

9) NOTE - if I was diagnosed in 2011 when my symptoms started or early 2015 when I was misdiagnosed, I wouldn't have had the benefit of 19 extra months of looking at the lives of heroes and  role models to get myself in order. Frankly, I would have been a mess. Get yourself a hero and a code of life / philosophy / theology now. They will help carry you when you and your caregivers can't.

BTW, my numero uno hero in the world is Jackie Robinson.

Check out other cool uplifting things by some of my heroes like...

LITTLE ZEN MONKEY

MR. ROGERS

BRYAN ANDERSON 

PASS IT ON DOT COM (USED TO BE VALUES DOT COM)

Random Parkies' blogs like this one SHAKE RATTLE BE WHOLE

If you want a female or a funny or a great established blog, check out PERKY PARKIE

10) Here are some of the quotes that inspire me. Find ones that inspire you. It doesn't matter by who. Post them around the house.

11) Since you're a Parkie, you get Muhammad Ali (above), Neil Diamond (below), and Michael J. Fox and his foundation on your team!

12) When you're first learning, try to only view solid websites with real credentials like Michael J. Fox Foundation and Parkinsonsdisease.net when it comes to information. I could list a lot of good medical ones (NIH, Mayo Clinic, and other reputable Parkinson's orgs), but if you start looking for miracle cures R us, you're going to find them and get led astray (as well as snake oil salesmen and conspiracy nonsense on otherwise good blogs). If you go looking in chat rooms, you're going to find a million diagnoses from possible to impossible to rare to wrong. Some people know their stuff. Some want to help. If it's bugging you, see a specialist. The best thing chat rooms do is provide support that you aren't alone and allow you to make friends, while learning about the issues. For this, I recommend many of them. However, don't substitute them for doctor's advice and experience.

On that note, don't go looking for further down the line symptoms until you need to. Move into this step by step and adjust to the water's temperatures. There will be time to think about deep brain stimulation videos later.

13) Educate others, advocate for Parkinson's cures, respond kindly - don't go looking for a fight (for not using People First Language, offering help or just not knowing), document your experience, don't sit thinking the miracle cure will be here by Christmas, and live your life to the fullest! Whatever will be will be, but remember, we can be the generation to motivate a cure for the future - even if it will never be for us. For me, that is my purpose numero uno in this game of PD.

I thank you for reading this, and I hope it helps you and helps others.

Recently, I started blogging HERE at Parkinsonsdisease Dot Net. You can read my diagnosis story at that link. I encourage you to check out other bloggers there, too.

I blog regularly on my own and have a Parkinson's site on Facebook. I encourage you to like it if you would like to read more about my Parkinson's experience as well as read about me being the me that still does what the old Dan used to do before he had PD (and some new things he's learned to like since then).

Here are 2 other videos I took on vacation about my thoughts on standing up to Parkinson's.

This one is at Yosemite

This one is at Muir Woods

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.