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

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Saturday, March 31, 2018

Kevin Hart and - Speaking Our Voice to the World

Last week, my wife and I went to see Kevin Hart. While waiting for him and his crew to entertain us, an endless warning of “don’t break out your cellphone” appeared, well… everywhere. As a result, people were forced to talk to one another or stand in the lobby or bathrooms to talk / text / surf the ‘Net if they couldn't communicate with one another.

We chose to talk about comedy shows we’ve seen and how my wife found it so amazing that Kevin could command $75 a ticket and sell out a minor league hockey arena in our town on the basis that people wanted to come and see him talk humorously about his life. Granted, we both love his stuff, but this is a guy who went from getting booed to getting cheap laughs nobody would remember to going large to being the number one comic in America because people remember his new style of jokes thanks to his mentor's advice.

I agreed, and I elaborated how awesome it must feel for him since I feel the same way about people taking the time out of their lives to give my stories a read. And really, that’s true. I’m humbled and ecstatic how many people feel that my story resonates with their lives or feel that I tell some semblance of truth to them in my blogs. Yes, it really is that humbling, but it’s also inspiring and motivating to the person that I want to be, which is a writer.

What’s even better is that my life gets to have meaning for the advice that I am able to give out to others based on successes, failures, and a life with Parkinson’s. While I’m definitely comfortable in written words, I never felt like I was a hero for this. I see Eddie Vedder’s statement about not being people’s “messiah” reflects some of what I feel, though for me, I look to the heroes that have inspired me in action and words to move my life to a better place. To a significant degree, my self-help is actually just me channeling their teachings into my platform.

However, I know that my experiences are also my own, though they are not all unique.

And that’s Kevin Hart, too. His messages of growing up and learning, while laughing at his mistakes, show a level of comfort that he feels in himself. I find that worth $75 to sit in the crowd and take it all in. For instance, in his show, he talked about _____, and then he talked about _____, which was really funny. He concluded his set of family stories and other miscellaneous happenings in his life with _____. Yeah, it was definitely a great show. In this, if you have Netflix, you can check out some of his other shows, too. Like his security said, though, don't expect people to pay big money to give you the jokes for free.

One thing he talked about that really moved me was the story of how he was robbed, when he said _____. Sitting there and taking it all in, I realized that there’s people who see our successes and want to suck them dry. For all the lovers who feel the joy, others will tear us down and drain our lives.

So do we run from future success since haters look to fling poop at our victories or do we speak truth and ignore the noise and friction? The answer should be easy, but if it was that simple, I wouldn’t ask it here. If we don’t care what others say, why do we?

I wonder as much as anyone if my words will be misconstrued. Am I a narcissistic wreck? Am I bragging about my accomplishments to the point I’m belittling others? Are my facts correct? Do my prejudices and preferences for how I live trample other valuable life expressions that could work for others? Am I too philosophical, intense, or verbose?

You get the point.

Nevertheless, I know I have something to say, and like Kevin Hart did at the end of his show, I shout my sincere thanks to all of you. Like Jay-Z said, you could be anywhere you want. You’re here with me. I appreciate that.

And I appreciate the good folks at who contacted me about writing for them several times a month. Joining their mission and the fine writers there not only leaves me humbled and excited, but it shows me that I’m saying things that can change your lives for the better. Every person I move is another person sympathizing with our cause, empathizing with our plight, and working on the cure.

As long as my tremoring hands type, as long as my legs can walk, and as long as my voice is loud enough and not too raspy, I’m going to keep it up. As Parkies, we’ve got everything to lose, so that means we have even more to gain.

So choose to live your life… out loud. Find the great voices that motivate you and run with it. The best days are yet to come.

And thank you again for choosing to give me 5 minutes of your time so I can make a difference in your life. That small feat makes a large difference in mine.

Thursday, March 29, 2018

On Opening Day, the World is All Future and No Past.

2018's baby owls

2016's owls

Baseball's arrival means spring is here. In Ephrata, where I live, we welcome spring with our baby owls, which are located down at the EPAC center. You park, walk over, set up your tripods, and wait. It's very publicized, and it can get packed.

Literally, people just shoot photos across the creek to the 2nd tree from the right.

But yes, it's spring, and it's Opening Day, and theoretically, everyone should have a chance, but teams are just playing and paying to be there and hold out for the future via rebuilding. Nevertheless, it wasn't always like this, so with that, I leave you with my 25 favorite baseball memories from current and historical footage as well as the message that today can be your opening day. Last year doesn't matter. Play to win for this season!

1)       Lou Gehrig’s Luckiest Man speech
2)      Mark McGwire hit number seventy in 1998.
3)      Jackie Robinson integrated baseball.
4)      Roger Maris’s quest for 61 in 1961.
5)      Chris Chambliss hit that walk-off homerun and got mobbed by fans.
6)      Pete Rose ended Ray Fosse in that All-Star game slide.
7)      Hank Aaron hit number 715 with snipers positioned on the roof to protect him. Then he got mobbed with love by those 2 guys who ran out to congratulate him.
8)      Walter Johnson’s wild delivery.
9)      Bob Feller’s class and pitching excellence.
10)   Carlton Fisk waving it fair in a game for the ages.
11)    Buck O’Neil speaking truth and love for the heroes of the Negro Leagues.
12)   Roberto Clemente’s pride and final hit, his 3000th, before his death by airplane crash in 1972.
13)   Rollie Fingers’ mustache.
14)   Brooks Robinson sucking up sure hits with his glove and leaving hitters dead to right with his arm.
15)   Kirk Gibson’s home run in game one of the 1988 World Series.
16)   Pedro Martinez’s sense of humor, smack talk, and his 1997-2003 run, including 2000, which may have been the best season in baseball history.
17)   Bob Gibson’s sheer dominance on the mound in 1968 by making baseball into a confrontation.
18)   Ty Cobb turning baseball into a war.
19)   Joe DiMaggio’s hit streak.
20)  Ted Williams hit .406 in 1941.
21)   The Pine Tar incident.
22)   Dave Roberts takes second in the 2004 ALCS game 4.
23)   Albert Pujols jacks a homer off of Brad Lidge in 2005’s NLCS.
24)   When I called Big Papi’s homer off Fausto Carmona.
The final day of 2011’s baseball’s get into the playoffs excitement ends with Jonathan Papelbon blowing it for the Red Sox prior to them sending him on his way to Philadelphia.

Wednesday, March 28, 2018

20 Thoughts for / about Those Who Care for Parkies!

This is day 4 of my 21 straight days of posting to promote my blog (my dream of writing for more than just a hobby). During this time, I will be covering lots of other Parkinson's issues in my posts every day, so be sure to check back again at my Facebook page or this page soon (and see my greatest hits on the wall to the right)! In this time, Parkinson's topics to be covered are paralysis agitans + my great grandfather, sleeping studies + sleep apnea, dysphagia, physical therapy, my first emotional overload in Mexico, disabled not disabled, the Universal Parkinson's Disease Rating Scale, responsibility of self to give up dangerous pursuits, National Parks passes for people with permanent disabilities, Kevin Hart + the joys / woes of people taking in our art, and hiking with Parkinson's stories, as well as other things that I do to stay me (baseball, music, writing, and other hobbies, as well as a few older stories that are going to end up in my Parkinson's book).

So... without further hesitation, here are my feelings on caregivers (significant others, family, friends, coworkers, passers by, and health professionals).

1. There are no rules on how to divide grief and suffering unequally in a family because we all get this crap sandwich equally. I may have Parkinson's and all its pains, but I don't get a front row seat to watch my body deteriorate or the knowledge of knowing that I will be the sole provider financially as well as physically for someone I love at some point in the future. There's a heck of a lot of emotions that go with that. A caregiver might not have tremors, but he or she gets to watch it all and not be able to do a dang thing about it. If you don't think that's painful, you're not seeing the tears for the grief and suffering.

2. We shouldn't get uptight if someone is trying to make us better in a way that we don't get.

If we think about it, we need to believe that most people want to help us improve our lives, even if they get the words wrong or talk to us in a way void of emotion (a pass we expect to be given AND SHOULD BE given for our raspy Parkinson's voices). They may have recommendations we don't have interest in (in my case medical marijuana to mask my tremors), but if they're offering things from alternative meds to Big Phrama's latest, it shows they're paying attention... unless they're just backdooring their own need to be stoned or they're a pharmaceutical rep getting paid on commission.

3. On that note, we should listen to George Clooney's life advice on David Letterman's new Netflix show. Whether you like his politics / movies or not, he'll inspire you, and that's what any good caregiver should do. Positive quotes videos go a lot further than another cannabis video (at least for me).

4. Many of us get worked up about ABLEISM, Is this a person offering to help me get down off a slick mountain trail as snow is coming down when said person knows I have Parkinson's? Is it a person who calls me a disabled person instead of a person with a disability? Is every person who mentions my condition guilty? Yes, it is our responsibility to teach People First Language, but we also need to live People First Lives. We need to enjoy our lives and show people we're just like Joe DiMaggio, Lou Gehrig, and Emile Zola by living our life and interests out loud! This goes for whether our hobbies are marathon running (like Jimmy Choi) or painting pictures. Like Nike says, "Just do it!" Ableism is trolls hating on us with malicious vomit. If you call me, "Shakes the Hiker" (my name for myself), that's not calling me a "shaky gimp with no purpose on earth." There's clearly a difference.

5. From a young age, we need to show kids what we have is an unfortunate part of life. We need to be age appropriate when we tell them what it is. When we can, I believe we should hide our fears since we need to be strong for kids, but when we can't, we need to let them know that they can comfort us, which will make us feel better. Making them a part of treatment empowers them with compassion, empathy, and medical interest. Besides, isn't our goal to educate and advocate on curing and caring for Parkinson's conditions?

6. OK, so thoughts and prayers are just that for some people. Maybe they work. Maybe they don't, but for people who don't know what else to say, these things show that:

A) they care.
B) they want us to get better.
C) our plight is something they actively want to help.

Whether we're religious or not, why should we get uptight about how someone else wants to do things like this? If someone wants to involve us in the ceremony, whatever, that's something different, but whatever people do in the privacy of their own home is fine by me unless it involves sacrificing a live chicken or praying to a Voodoo god (or the like) to actively intervene for my behalf.

7. This sentiment also comes out as the sad look and words of "I'm sorry," which we hear when we tell someone we have PD. I get that people don't know what to say. I wouldn't know what to say either, so things like this are "well-meaning" to me unless they're mixed with how this is a karmic punishment or a sentence from God for living a life that's out of line. That stuff should have ended with the aftermath of the Salem Witch Trials.

8. If we're going to educate and advocate, all topics are on the table. That said, if people can't handle things that are too intense, be respectful. Just the tip of the iceberg may be enough for some people. Remember, too, that it took us time to come to grips with DBS and our body's reactions.

9. If we need people to be strong for us, we need to be strong for them. Really. This makes us forget our plights and empowers us to overcome momentary pains.

10. Make life easy for those we love. Give them disclaimers and explanations ahead of time. If I could get overloaded in situations, then people already know about it. It's no biggie. Sometimes, it's easier to let them know, "It's not you; it's my Parkinson's." Help them to understand this, and when it's over, apologize for PD and do your best to give them your best. Unfortunately for my wife, she won't get new jewelry every time I don't want to deal with robo phone calls, but I'm good for hugs, love, and kind words.

11. Teach people to avoid junk news and conspiracies. This way, we don't get nonsense from them, and they don't feel that the FDA is hiding something that could save me tomorrow. If they don't understand meds, explain them to your caregivers. Also, tell them to do the Internet in moderation, and when they do go, go to a reputable site like the Michael J. Fox Foundation.

12. Teach them that not all medicines work for all people. Sometimes, we need bigger doses, or we get side effects. It happens. Medicine is a process.

13. Help sessions are good for Parkie caregivers, but avoid gripe sessions. Yes, it's important to hate on Parkinson's, but don't let it turn into, "My Parkie spouse / kid / friend sucks." That's not healthy.

14. Help us live well. Enjoy your time with us. We aren't going to die tomorrow. Understand what we can't do, but push us through our apathy to get out and enjoy life. We never know when King Kong, Ghidorah, and Godzilla are going to rage on the world. Until then, carpe diem!

15. Humor is a good thing, even if it's weird. I joke with my wife about it being a hate crime if she calls me clumsy. She always retorts with, "That's not PD; that's Dan." She's right. After all, I'm the guy who tripped over backward while trying to play the snare drum and tap my foot at the same time.

16. Express death wishes in writing via a living will. Do it now. There will come a time when someone will have to help you make medical decisions. Face that truth and make it happen. Also, confront how you need to know when to give things up (the car, your interest in hunting, mountain climbing, work, and The Real Housewives of Beverly Hills).

17. Let people know what your current issues are. Even if you're not showing past tremors, they may need to know (see Parkinson's mask). By knowing your level of disability or whether you view yourself as "disabled" (some of us still don't see ourselves at that level), they will know how to treat / help us. Caring people will care. Haters will make us contagious and ugly with their troll-like words. It's best to find caring people and avoid the others.

18. Tell them how to help us prepare for the next stage or more intense future symptoms. Let them sit in with you in your doctor appointments if they're at that level of closeness. My wife gets front row or phone privileges for all of her questions. When the appointment is done, my parents get explanations as well, and then it goes out to the family. Since I educate and advocate, this goes blog viral, too.

19. "Till death do us part" and "in sickness and in health" are just words for many people until they aren't (though they should be a sacred vow). Hardly anybody thinks about wiping someone's butt until it happens. If you have someone who is there in good times and bad, be thankful and reciprocate the love. I know that I am and that I do. If you know someone who lost a significant other to this, try to be there as best as you can for that person. The same is true for people who lose fair weather friends or get exiled from the job. Some people don't get it, but if you do, be there and educate and advocate for your friend... as much as said person feels is appropriate.

20. If you're a caregiver, you're a helper and a hero to someone. Mad props for all that you do. Keep up the great work.

Thanks for reading!

Tuesday, March 27, 2018

Twenty Years (Later) of Road Trips - Crunching in a Few More before the Final One

In hindsight, one of the greatest decisions that I ever made was driving cross-country in my return to America in 1998 (twice), 2000, 2002, and 2003. Yes, there were partial trips of incredible distance many other times as well, to include northern Maine in 1997 (and 2 other times to southern Maine), Mardis Gras in 1999, Niagara Falls in 1999. and Biloxi in 2001, but to start counting partial trips, well, that would go on and on with other treks to North Carolina, Georgia, Ohio, Michigan, New York, Vermont, Massachusetts, Virginia, and West Virginia. Where to draw the line?

The reality: I've been to 43 states in my life. Everything but Oregon, Washington, Alaska, Hawaii, Nebraska, North Dakota, and Iowa. Someday, I'll tag those 7, too. I just need the time and funds.

Since my first group road trip with 2 fellow Air Force trainees from Sheppard AFB in Wichita Falls, Texas (home of many wannabe Marlboro Men and former home of the Dallas Cowboys training center) to Mather AFB in Sacramento, California, (a base in wind down mode at the time) via Edwards AFB in the desert of southern California (home of The Right Stuff pilots) life changes. Isn't that the message of everything?

As I said, twenty years ago this summer, I was setting out on two long-distance drives. The first was a four point-trek with my friend Brian to go to Chicago, Memphis, Biloxi, and the Chesapeake Bay Bridge. Originally, we were going to head to South Dakota, but the weather out there was lousy, so we went to see my friends Heidi and Will about a month before she gave birth to their first son, Zach.

Let's put it this way, that trip to New Orleans was so hot that June that usually stingy bars actually felt bad for her and let her use their bathroom since she was so ready to pop! Fortunately, she didn't pop on Bourbon Street, and now she is the mother of a 19-year old boy.

The next trip was my defining act: THEE solo cross-country trip, which saw me drive 20+ hours straight to Biloxi. I followed that up the following February with a solo 23-hour venture to Biloxi via the Shenandoahs Skyline Drive to Mardis Gras and back via a friend's house in Fayetteville, North Carolina.

In 2000, I drove cross country with a friend. It was a long trek out, and he freaked out in the quiet isolation of America after being rained on in South Dakota while camping. Nevertheless, we motored back from San Francisco to Big Bend National Park in Texas. Forty hours later, I was sleeping on the side of the road while he slept in the Ford Escort. After we woke up, we trekked all the way to Biloxi that night. Eventually, we got home to normality, but our friendship was essentially dead because of the trip.

So it goes.

Somehow, I didn't mind the exhaustion in those days or the days of 2002 and 2003 when I was driving cross country on 2 other 10,000 mile ventures out to the Colorado Plateau and slightly beyond. I did mind the depression of leaving the shambles of my life in 2002 to face a lot of ugliness in America from a fouled-up rest station north of Chicago to memories of an ex-girlfriend to strained friendships to questioning teaching / teaching questioning me to "who the hell are you?" That trip was very long other than a million stars at Mesa Verde. I didn't last long on the road, but I went to Devil's Tower, Yellowstone, and the Southwest pronto tonto, all but ready to throw every depressing CD mix out the window. Only Mojo Nixon, Drive By Truckers, Dan Bern, Jimi Hendrix, and Limp Bizkit (I admit it) held any ability to move beyond those things. Fortunately, other than messing up at the Wave (PART 1 + PART 2), another story for another time, the 2003 trip was much happier.

Since that time, I put 250,000 miles on my Yaris (The Macho Dude). I put a fair bit on the old Chevy S10. I drove many neat places in my wife's Mini Cooper (Bradley). Nevertheless, as middle age and Parkinson's creeps in, I think about how driving has changed (other than just contemplating how someday it will be no more, and I will be "the passenger").

Now, my wife and I alternate driving every 2 hours, if that, while we drive to and from Georgia. What's more, this is "only" 11.5 hours of actual driving, though with stops, we take about 13 hours without traffic to see her sister. Last time, Heather did the dark mountain driving through the snake loops. I did a lot of straightaways. Gloriously, there are no city loops to go through (like the Helltown of D.C.), but certain exits are bad, such as 81 to 64, which leads to Richmond or Charleston. All the same, it's a boring drive. Even with the Shenandoah Mountains, it gets old quickly. Waiting for states to appear... Maryland, West Virginia, Virginia, Tennessee, Georgia... isn't enough to help out (so I can yell about where The Rock has come back to). The highways are long and endless.

So tell me; how the heck did I do it back then?

In the day, I didn't think much about traveling and sleeping like this. I remember thinking about how a bed without my fluffy pillow was uncomfortable after 12 days of sleeping in rest stops in a truck bed back then, but yeah. All i had to do was go out and get it to bring back to my real bed. Now? It's tough to drive to the 1,000 Steps, hike it, and drive back in one day (2 hours each way). Let's not even get into how it requires rest to come down from a long hike.

However, I was young and indestructible then. Before my immortality gave way, I learned I could do those adventures by driving 19 hours to the tip of Maine to see Phish... yep. Life is meant to be spent on the road; hence, the opening video of Phish's "Twenty Years Later."

Long story short... a few points.

1) travel while you can. You never know when King Kong and Godzilla will rampage. Parkinson's will take this away from me someday, but as long as I can, as a passenger or driver, I'm going to do it, even if I occasionally get overwhelmed as a passenger! That said, as I cram my final driver trips in before "that" day, I note that I don't intend to stop altogether until I feel too overwhelmed to do the long drives as a passenger. Life is for living.

2) see the world. There's amazing things out there to see. If you spend your whole life where you were born, you're not going to get the real American flavor. All 4 of these places are America.

3) driving across America all those times defined me as an American, a person, and a dreamer. I wouldn't trade that for anything.

4) write your stories about your journeys in and out while you remember them. They're memories for sharing, so don't be selfish! I wouldn't remember more than 25% of mine (even with pictures) if not for the words.

5) Unless your wife can do Tetris, you probably don't want to do the drive in a Mini Cooper, unless you can cram yourselves in there (and still be comfortable)!

6) No matter what you do, take lots of different music. You'll even get bored with favorites.

7) Make sure you take lots of pictures as well... Memories.

These pictures and words I share with you now... My 1998 cross-country journey in image and as a draft toward the story of my life written many years ago.

When my summer college classes let out, I finished up the last few pages of a paper on the poet e.e. cummings, dropped it off with my professor, and after packing up my maroon colored Ford Escort, I filled myself with all of the wonderful thoughts of what could be in an America I wanted to discover. I said goodbye to my friends, and that was that. With that, I left on Saturday August 15th, 1998, filled with the illusion that I was Walt Whitman celebrating myself and all that surrounded me, greeting the new day and all the appeared after the sunrise, hyper aware of all things that appeared, be they natural, man-made or caterpillar nests in trees.

While I was not going alone by choice, I was off on a solo journey to see my friend Will, his wife Heidi, and his son Zach. Earlier in the summer, I had asked my friend Brian to come with me. 

In the time before we were friends, Brian had been across America on 2 separate trips, although he had never made it to the Pacific Ocean. The stories from the road, as well as the experiences and knowledge that he had of traveling like this, made it obvious that I would open up the trip to Brian. I really liked Brian’s company, and he had highway mileage experience, though his journey was marred by the great government shutdown of 1995 when all non-essential government employees were temporarily put on hold until the budget could get approved (I left the Air Force waiting for my final paycheck because of this). As a result, he made it to Dead Horse Point in Utah, but he never made it to Canyonlands or Arches National Parks. Nevertheless, there are still trips he has taken that inspire me, and for the longest time prior to his marriage, I had someday hoped that we could go on the road again, but I realize that this will never be, since we have both gone in different directions with our lives, which isn't a bad thing since we're both in great middle age places.

And yet on the first real trip we took, there was music. Along the highways and back roads, we would end up cruising across the heartland of America to Elvis’ “Burning Love,” Jimi Hendrix’s “Axis Bold As Love” and Uncle Tupelo’s “New Madrid,” as we drove through flat and dull eastern Ohio. Who would know that I would end up making this journey over and over again many times beginning a decade later?

One of my strangest memories happened as we were cruising across Ohio in 1998, I saw a sign for Kent and asked if this was the town where the riots took place in the 60’s?”

“I don’t know.”

At that, a sign for the school appeared and we looked at each other, smiling as I made him slap in a tape of Crosby, Stills and Nash’s “Ohio” and we sang along and journeyed off to find the neat-o historic stuff that was sure to be there. Fortunately we didn’t have to look hard; we met up with an X-Files / conspiracy fan who guided us to all of the monuments and hidden, yet poignant spots, telling us the story of what happened and why, asking politely if we would hang out with him, but we had to leave and did.

Then we continued our adventure through a previously unknown to me America of John Cougar Mellencamp style farm country. The small towns and the heartland just opened up and the drive slowed down. With this, we went off into the night and eventually made it to see a gal that he was friends with in Hammonton, Indiana, which is west of the smoke stacks and eternal pollution of Gary, Indiana, and east of Chicago, Illinois. We stayed about as long as his welcome would let us since the gal we were with had a husband that didn’t think much of Brian stopping to visit. Nevertheless, we saw Lake Michigan before we headed south, and then, we headed off into the night sky and south to adventure.

We left Gary around midnight to be in Memphis at noon so we could eat and watch blues musicians play on Beale Street, and then we saw the outskirts of all that is Elvis’s home at Graceland. We saw the Sun records stuff, and even the death site of Danny Thomas, which was a brutal drive as we roasted in near 100 degree heat trying to find the mosque for Brian to pray at. Well we found it and then ended up driving to Biloxi where we saw Will and Heidi and hung out till midnight the next night after seeing the sights of the Mississippi coast and chilling in their presence in grand old New Orleans. Perhaps, the most memorable moment of the trip came when a woman who was standing outside of a nudie bar invited Brian in to watch a live orgy. In his most humorous, but serious kind of way, he asked her if that would be a spectatorial or participatorial orgy, but alas, these sex Olympics events are only meant to be watched in the Big Easy, although I’m sure that things change at Mardis Gras time.

Thus, off we headed home over a day and a half over the bridge at Virginia Beach and under the water when it needed to make way for boats on the Chesapeake. And thus, we were eventually back home after a sticky and sweaty drive straight through a day and a half drive up the Eastern Seaboard after only a brief stop at a North Carolina beach and a quick stop to take pictures of the remnants of the 1996 Atlanta Olympic site. If that wasn’t marathon driving, I don’t know what was.

Brian was my Japhy Ryder, and I could equally be Ray Smith, his little lost dog of a follower, scampering off to meet anyone who poses anything interesting that could make me better, yet all the while tagging along for the ride in some great spiritual way – at least at the time, but during that time, I was learning and changing and getting ready to be something more and to do something great.

As a result, Brian made the road trip across country a lot of what it was, which was an event that defined my life at that time.

Originally,  Brian was willing to go on the big trip if other things didn't happen, but so much of his life was still up in the air with the knowledge that he might get a job teaching in the Middle East. Thus, he went full-fledged into his life when a teaching opportunity came, and I drove off on the journey to my own life.

For the original ideas that my first cross-country jaunt was meant to be a viewing of all that this country was, coast to coast, in large part, this trip became all about the great American pastime. I knew when the Cardinals would be in St. Louis, and the last chance to see them was August 30th. After that, they would be pulling out of town. To see them anywhere else before I saw them in St. Louis was anathema. It all seems so simple to say that I would get to Busch Stadium and see McGwire play and it would be great. The journey itself seemed as if it was pre-ordained.

But first I had to get to Will’s house.

While traveling to Will’s, I was alive with energy, at least until I hit Tennessee. I stopped to get pizza for lunch at an out of the way diner, was looked upon slowly and negatively by the local hillbillies, like I was a character in Easy Rider and they were offering Southern witicisms. Thus, I proceeded to get out of there as quickly as possible. Afterwards, I lost energy rather quickly and tried to sleep at a road stop McDonald’s, but this was no use. I drove on and on, eventually passing the winding river that runs through Chattanooga, Tennessee, and I headed into the empty nothing that is Alabama, where no stars fell for me that night.

After passing through that little bit of Georgia that is the gateway to Alabama, nothing is beautiful while driving in the dark. It is all empty blackness, long stretches of straightaway, and sheer mind-numbing exhaustion. The beauty of stars through my sunroof that I experienced when Brian and I drove into town on that long stretch of Highway 59 wasn’t even close to being there. Though I drove in at nearly the same time, I was beaten into near unconsciousness by the 1,240 mile extent of the drive. Had it not been for the “friendly” police officer who had me pull over onto the side road outside of Shubuta, Mississippi, guilty of the crime of speeding, the drive would have been much worse than it actually was. While the military looking officer of the law let me off with a warning and proper directions (I am still thankful for that), being a northerner in Mississippi who had seen all of those Deliverance style movies one too many times, I knew what could happen on that dark road from just such a man. Fortunately, none of the nightmares came true.

Instead, I was just a stereotypical jerk.

I drove off slowly, cautious of my speed, and felt revived for another hour or so knowing that I was off to Will’s house, and just like when Brian and I went, I didn’t get in until nearly 2 in the morning. Every single trip to Biloxi became an endurance run. To stop anywhere before the casino / military base / pawn shop slums of Biloxi and spend the night seemed like failure when a real "free" bed awaited. All I wanted was that bed, and that was provided by Will and his wife Heidi.

Eventually, like every time before and after, I made it and all was good with the world again.

The next morning I made the call to my parents that I had made it safely. I also made a call to Kat that I was exhausted, and though I would be out to visit her in a little over a week, I wasn’t going to be going with her to do the Seattle trip that we talked about. I suggested a shorter trip instead. She was not happy, and while she held back on much of what she could have said, she still said a lot of what she felt. I didn’t let it get to me, and I had a great time with Will, Heidi, and their son Zach who had been born since the last time that we saw them in June.

There was a truth to the fact that I was exhausted from traveling all those empty miles to Biloxi, and then there was the feeling I knew that I was going to have after the distance heading out across Louisiana, Texas, New Mexico, Arizona, and into California for the better part of a week, but the truth was that I was hell bent and determined to see Mark McGwire challenge Roger Maris’ home run record in this magical summer of 1998. I had to be a part of watching Mark McGwire hit #62 and forever stand atop the records of crowning baseball achievement.

There was never any sense of anything that wasn’t mind expanding, as reminiscent of that Whitman-esque way that I had on the first day, for the rest of the journey until I hit Western Arizona. Prior to that, I saw the swamplands of Louisiana and drove into Dallas thinking of the television show Dallas, composing postcards in my head and relaying back all that was the glory of being on the road. When I wrote these cards and dropped them in a box, I named myself after Different Strokes characters, obscure and eccentric as ever, hoping the postman would catch a laugh while he plodded on through his usually mundane mail route.


And now, now I think of a life that's almost twice as old. Some of those things matter. Others? Not so much. Nevertheless, they're who I am, and for that Willis knows what I'm talking about.

Monday, March 26, 2018

5,000 Hit Posts - Why I Write about My Parkinson's and My Supernatural / Action Fiction!

Above is a video explanation of why I write and why I feel you should write, too (if only to share with yourself and friends). Rather than re-post all of it, I'll just encourage you to watch my video. It's less than 3 minutes, so yeah... good commercial break info.

The essential thesis is Emile Zola's quote, "I am here to live life out loud." In addition, it's about defining yourself and controlling your narrative so others can't make you feel like less than you are. In your writing, you can be you. Be honest, be bold, and be beautifully imperfect. Warts and successes, we are who we are. Never be afraid to be you... even if you're a white-whiskered, chubby-bellied, self-important Parkie rambling about interests few people relate to, you're still you. Be that person who is living life out loud (besides, I'm happy to be all those things because that means that I may have PD, but it doesn't have me)!!

Today is day 2 of 21 straight days to push my blog hard (a new post every day) to move to a place where I can live out my dream to write for more than a hobby. Much of this is based on a decision to educate and advocate for Parkinson's knowledge in places that I go (being visible / being strong / showing my positive). For instance, my wife and I are going to Yosemite in May. Being on a more national front with people helping me spread my story helps show people that I may joke that I'm "Shakes the Hiker," but I'm more than tremors, Parkinson's mask, a dystonia-affected left foot, dysphagia, hyperhidrosis, and many things people don't know about. I'm a guy who's going to push himself to get to places that let others know, "not only are we out here, but we're keeping it 100 (as the kids say)."

Yes, this is about being a professional writer and blogger, but it's about letting people know that we should be choosing to live life and not writing off people when they can still do things (and they want to do them, too!). This applies to anyone with a beating heart. Make your days count! You never know when Godzilla, King Kong, and the other monsters will strike and stop your chances to do.

I won't be posting all of my links on all Facebook pages, so you're going to need to Google follow me or join my Parkinson's Writer Facebook page for constant info. This is because not every post will appeal to the same group, so rather than post about every idea every day, I'll just be sharing links when they're pertinent to the site.

So... for today, I leave you with thoughts on being a writer (both fiction and nonfiction). Here are 12 thoughts on writing based on my experience in the classroom and at the computer.

1. I have written stuff since the late 1980s. Much of the beginning writing was quick story slivers, bad poetry, and pseudo-prose written as rambling literary / emo before I knew much about either.

This fire is what happened to half of the poetry and prose. The rest was shredded. That's OK. It wasn't my baby, and besides, overly emotional in the moment stuff is better to get out and then destroy. Who wants that lying around anyway? In the end, it was all practice. Get your 10,000 hours of practice like Malcolm Gladwell said (no matter who disagrees). As opposed to the rambling emotions, most of my best practice was writing letters to friends while in the Air Force. I could ramble for pages about nothing. Imagine when I had something to say! Additionally, I also learned to type without looking through Instant Messenger. Go figure!

2. I do see that emotional knee jerk expression as a cathartic necessity, but when it comes to the final product, that conflict needs to be resolved and moved beyond before publication. A writer who can control his or her emotions in the moment and just be objective (facts vs. subjective emotions) is achieving one of the first goals in the life of a writer. Commas are further down the list somewhere.

3. The most important trait of a writer is believing that he or she has something worth saying (if you don't, you won't get a word out). Blogging is a great opportunity to write it down and put ourselves out there. I recommend the ready-made fans websites of people like you (that's why I'm publishing to hikers, Parkies, travelers, baseball fans, fans of music I like, and people into the supernatural).

4. It's easy to give it away for free. It's harder to sell it. You only have so many friends and relatives and friends of relatives. That said, when that time comes to sell your books, be patient, figure out a marketing strategy, and make it happen. Don't get discouraged. That's why I have this online blog and this Facebook page for my Parkinson's writing and this page for my supernatural writing. I also have a real deal web page. I encourage you to check them all out! I definitely appreciate the likers and followers. Nevertheless, I wrote the Parkinson's blog for 18 months before I had a 3,000 hit post. More than that, I've written many blogs, and some of them never got near that many hits in all of the posts. When I finally did, the post went to just under 5,500 in 4 days. The comments that went with it felt reassuring. Nevertheless, this isn't overnight success. Additionally, this is still humbling and exciting, though I look to expand my success at getting my experiences and thoughts out to people.

5. Some people are all about creating their brand from day 1. To be a good writer, you need to be all about learning how to achieve the flow first. Practice, practice, practice. Get those words going from A-Z without skipping letters. This is free writing. Don't edit. Just flow. Make Jay-Z proud. Additionally, your brand might be arts and crafts, but you put more into being a parent. You can write what you like or write what succeeds. Which way you go is a value choice. Only you can make that.

7. Before you even think about branding, you better be able to outline and follow it. Remember, you're not Faulkner, Kerouac, Tarantino, or some creative writer flattening out time in a stream of consciousness technique to be artistic. Beginning to Middle to End. The beginning can be Megamind falling to earth, saying, "How did I get here?" That's fine. Then tell the story from the beginning. Gradual reveal is also fine. John Travolta shot and killed in 1 scene and alive and kicking in the next? Don't think about it until you're declared a creative genius. Even then, stay real enough or you'll be Kanye West sampling about being provocative and how nobody understands that. At least he could laugh at himself. Besides, he's got mad bank (even if he's a male Kardashian) should people think he's "cra cra" (and they do).

8. Find a good adviser and a good editor. Don't shake said person off. This person is trying to help you (especially if you aren't paying). Your job is to nod appropriately and do. My editor is MaryAnn (see below). She has done so much to help promote my writing dream. What would I do without her? Mucho gracias! She kept me from writing a Walking Dead ending, and we all know how bad that "who did Negan kill?" episode was for the franchise. As for editing, eventually, you will need to learn grammar. You don't have to be perfect. You'll never get there, but there's acceptable errors and "this is a nightmare." You always want to read out loud for clarity, and keep working on it to get better. When it's done, take a deep breath and move on like Mike Desantis, a stats teacher I learned from, said.

9. There's nothing wrong with being an imitator when you're finding your voice. A lot of my writing is influenced by books I read, movies I watch, songs I listen to, and people I know. At my earliest period of impressionable influence, it was Henry Rollins. The last authors I read that really got to me in that kind of way were Chuck Klosterman, Nick Hornby, Bill Simmons, and other page-turner autobiography / thoughts types. Of course, there was also Henry Miller, Kurt Vonnegut, Jon Krakauer, Edward Abbey, Laurence Gonzales, and Jack Kerouac, but yeah... authors come and go, and we add in as many Ken Burns documentaries as we do of the local ghost story writers flair (here, I think of Charlie Adams). Don't let people make you into Jane Austen unless you're writing about dating customs 200+ years ago. If you want to be Jack London, then make your dogs into the primordial beast persona of yourself! Besides, Jane Austen has nothing to teach about that. All the same, Jack London couldn't write a woman accurately if he had a gun to his head and his life depended on it.

10. JK Rowling was rejected 12 times before she became the first billionaire writer with movies and a theme park to go with her books. Oh, and they reduced her woman's name to initials to sell to little boys, who might not like reading a woman's work. She nodded appropriately, but now she can buy all of us and speak her mind about lots of issues (and she does!). The moral of the story is not to compromise, but rather, it is to know about being patient and tough enough to handle rejection.

11. I didn't meet my wife until 2007 (age 36), but when the time came, I learned from the good and the bad things that I did and others did to me in my relationships to make it work in the now. My wife may not be a writer, but she does support and encourage me. Get yourself some of these people, too. You need love, encouragement, non-writing love, and a ground team. That said, find yourself some writers and readers, too.

12. Have fun with it. Nobody is paying you $1 million for your book until you have something that they feel is worth reading (be it a heroic moment landing a plane on the Hudson or a long story about Hobbits). In our own mind, we may know we have something great, but without that push, we're not even going to be in the bargain bins. I call this the JK ROWLING BLUES. People are told by advertisers what to read, and when that happens, even Wal-Mart sells out of our books. Remember, most people don't just buy a book to buy a book. When they do, they're told what to buy, and then we get 50 Shades of Gray, Stephen King, Dan Brown, Anne Rice, Stephanie Meyer, Michael Crichton, Maya Angelou, Suzanne Collins, and James Patterson. Until then, write to write. Write if people don't buy. If they do, thank them. If they don't, keep writing anyway. In his life, Thoreau would joke about having 900 books in his library, which featured 700 of his own works!

By the way, if you have to give it away to get instant love to get to the paid love later, do it. Here, my 600 pages of The Rules of the Game can be a free download from time to time (on Kindle) in the same way new businesses need to do Groupon. Granted, it's tough to want to pay $10 to give a print book away, but digital love or sample chapters... definitely.

I love me some Groupon! Oh, and I also love me some Tiffany Haddish!

As a bonus, here are Jack Kerouac's techniques for writing (spelling issues are his)...



1.      Scribble secret notebooks, and wild typewritten pages, for yr own joy
2.      Submissive to everything, open, listening
3.      Try never get drunk outside yr own home
4.      Be in love with yr life
5.      Something that you feel will find its own form
6.      Be crazy dumbsaint of the mind
7.      Blow as deep as you want to blow
8.      Write what you want bottomless from the bottom of the mind
9.      The unspeakable visions of the individual
10.   No time for poetry but exactly what is
11.   Visionary tics shivering in the chest
12.   In traced fixation dreaming upon object before you
13.   Remove literary, grammatical and syntactical inhibition
14.   Like Proust be an old teahead of time
15.   Telling the true story of the world in interior monologue
16.   The jewel center of interest is the eye within the eye
17.   Write in recollection and amazement for yourself
18.   Work from pithy middle eye out, swimming in language sea
19.   Accept loss forever
20.   Believe in the holy contour of life
21.   Struggle to sketch the flow that already exists intact in mind
22.   Dont think of words when you stop but to see picture better
23.   Keep track of every day the date emblazoned in yr morning
24.   No fear or shame in the dignity of yr experience, language & knowledge
25.   Write for the world to read and see yr exact pictures of it
26.   Bookmovie is the movie in words, the visual American form
27.   In praise of Character in the Bleak inhuman Loneliness
28.   Composing wild, undisciplined, pure, coming in from under, crazier the better
29.   You’re a Genius all the time
30.   Writer-Director of Earthly movies Sponsored & Angeled in Heaven

As of right now, I'm doing a few things differently (as I said earlier) as your support (a 5,393 hit post about my Parkinson's learning) and the release of my 3rd book, The Rules of the Game, which I put out on Amazon (whose site CreateSpace allows people to vanity print on demand) have shown me that other people believe I have things worth saying as I work on the outline plan and writing for my Parkinson's book to be done by July or so.

As for my current book, it's a supernatural action story. For parents looking to see if it's for teenagers, I do discuss ratings ahead of time for age appropriateness. At some point in the near future, I will be releasing it for free on Kindle.

It's not everyone's cup of tea, but it's something I like creating that keeps me from being PD. At the end of the day, my characters need to be fully developed and realized, so let me write!

Thanks again for the love.

I'm humbled.