Think / Able

Think / Able

Tuesday, September 12, 2017

9/10, 9/11, and 9/12 Attitudes - Successful Strategies for Dealing with Change (and my Parents' 47th Anniversary)

9/10 - 9/11 - 9/12... 3 different attitudes altogether. The first represents an America that had never seen horror on its shores due to such malicious and heinous tragedy (of course, there was World Trade Center 1, the Alfred P. Murrah Building, Wounded Knee, but you know what I mean). The second date, 9.11, need not be elaborated on since many of us have our memories of that day (though in 16 years, a lot more people exist who have no memory of that day since they were too young too process it). There are things we remember (buildings falling) and things we remember seeing afterward (bodies falling out of windows). There is a vision in the dusty haze, and there is a voice on the megaphone stating how government can still hear you while another local government honors the victims at funerals every day. For this, they brought us together until “mission accomplished” became a rallying cry.

For that, the 9.12 attitude of who we became after the collapse is still present with us.
After this day, we couldn't hide our heads in the sand. We had to do something, which included ending the culprits as soon as possible (May 2, 2011, with the Miley Cyrus soundtrack on for the biggest of the criminals, though the 2nd biggest was March 1, 2003for those keeping score). That said, we still fight that war today (2,403 casualties to this date with more fighting and casualties to come). We still are mopping up and propping up in Iraq and continuing something or other in Syria as we consider making our war in Afghanistan one of mercenaries. We have threats of North Korea and Venezuela as well as unresolved issues with a nuclear Iran. We’ve also had issues over situations in Libya and Egypt. It’s like we’re in for something new every day with the reactions we and the world have had to that Indian summer day.
As for where we stand about this news, SOME DAYS WE LIKE the legislation and planning as well as the Navy SEALs doing what they do best (and let me say, I've got mad props for those people and what they do). THEN THERE'S OTHER DAYS when our attitudes have changed on what we used to like. Attitudes toward bombing countries back to the Stone Age or passing the Patriot Act, are not so simple for our isolationist / libertarian / conservative Edward Snowden realities. On that not, Sean Hannity has done his best to convince us WE DON'T LIKE those realities anymore. So yeah, our scorekeepers simply tell us to follow or growl, and we do, just like in 1984 where Oceania is or isn’t friends with Eurasia on that given day. Just like in fiction, reality seems to reflect the fictional nature of this partisan beast. As a result, this country is way more divided than ever with 2 diametrically opposed groups ready to divide themselves off from the other. I wake up, and I wonder how we've ever gotten to a point where we let the Internet trolls on the left and right make our decisions for us.
In this war, we got our heroes. Todd Beamer said, “Let’s roll.Marcus Luttrell was a lone survivor. Jessica Lynch was a POW. Pat Tillman gave up a huge football salary to be an Army Ranger. A small contingent of men won the Medal of Honor. We applauded, and then a new reality happened for some of them (Lynch’s actual situation / Tillman’s death from friendly fire and the cover up, for instance).
We just never saw it the same again, and yeah, things changed. People stopped paying attention and just kept up with the Karadashians.

Ever since the attack, I always wondered what would possess someone to plan a suicide attack like that. Even more than that, I wondered how so many men (19) would logistically plan and fulfill the "responsibilities" that they had toward participating in a suicide mission against innocent human lives. Maybe it’s the educator in me, but I just felt that knowing this could help us eliminate the situation in the future. Maybe it's the human in me, but I just can't see how someone could harbor that much hate for that long of a time. Then again, unlike those people, I'm not a sociopathic freak and existential threat to mankind who is bent on complete domination. Well, I hope I'm not, though some people might find me to be the spawn of Satan for other things that I accept or don't accept regarding my tolerance of people's rights to be themselves in their lives that don't hurt others to live as they want to live.
Sixteen years later, I still don't know, but the horrific event’s effects to the economy, the airline industry, the never-ending grudge to fulfill Toby Keith’s mantra (as opposed to Alan Jackson’s reflections), and the partisan divide coupled with the inability for our country to leave the situation scares me because it will fulfill the educated reality of George W. Bush’s “war without end” promise (though it might have played differently had we not gone to Iraq).
Since that day, we’ve given a lot of money, effort, and lives to continue a situation without a definite goal. Maybe that’s because we don’t know what our goal should be. Maybe it’s because we’re scared of nation building. Perhaps, it’s because America doesn’t have the stomach for seeing General Sherman march to the sea all over again. Maybe it’s because we don’t want this thing to turn into the Crusades again. Who knows why it is? The reality is that we’re here, and in hindsight, just like every other war, politicians get attacked for saying long war (see also the Civil War's political casualties). Bush definitely understood that even if he didn’t understand the fear of commitment Americans had to his Crusade.
As I ponder this today in our Brave New World, I think about North Korea and their threat to detonate an electro magnetic pulse over the US (via hydrogen bomb) in retaliation for oil sanctions we might inflict on them, and I wonder what the heck has happened to this world. I think about what would happen to an America where computers were fried and unworkable en masse (I’m thinking life like the Walking Dead without zombies, but just as bad). I think about how we’d respond to that, and yes I know, the news is fear-mongering (especially when it's picked up by the extreme right or left) and Kim Jong Un might not have this power, but… But I think of what could happen to South Korea, Japan, and Guam if a man who is only liked by Dennis Rodman goes berzerk. I wonder if China would stop it to keep getting paid by their favorite trade partner. I wonder what Russia would do to escalate it since their presence in the United States’ foreground has been majorly changed since Wikileaks and their Trump dealings.

I wonder what would happen in Trump America if we went from fantasy football to the draft and able-bodied soldiers in waiting had to ask, “What the heck just happened? Why are you drafting me?” (since it’s clear that many people don’t follow the news except entertainment and sports on Facebook’s trending column).
And all this stuff bothers me since we live in a country facing Equifax fallout, 3-4 different hurricanes at once, a presidency that wants to legislate without Congress's input almost every day on things we need to get rid of or add into the system based on the fact that they were enacted by the last guy.
I think about all of this, and I go back to reflecting on a few events that occurred, though none of them ending up in a history textbook.
The first is from an interview that Wilco’s lead singer Jeff Tweedy had where he talked about playing with his toddler son instead of watching the news on 9/11. It wasn’t that he didn’t care about the power and the impact of the moment; it’s just that he wanted more time with 9/10’s innocence before plunging into 9/12. It was such a human thing to do, and all things considered, it was so much better than just staring at the news and the bottom ticker 24/7 (at least until the Onion and South Park came along and truly spoke about what we were all thinking).

The second event is my parents’ 47th wedding anniversary. In many ways, it’s totally unrelated to 9/11 stuff except that it happened on 9/12 and their anniversary airline flight and trip was cancelled due to the no flights going in or out mandate. I think about their anniversary today, and I realize that in the end, life is about love, happiness, family, and the good life. Not every day is a clown party, but when we learn to accept one another for the good, bad, and indifferent, we have the potential to do and be our best since we are a like-minded collective (even if we're different in so many other ways). I think about that and realize that, yeah, we can hold our grudges, but we also have the opportunity to find ways to be better with what we have learned throughout our years. This isn’t saying that some things aren’t worth fighting for and defending (this is definitely true and we really do need to get rid of Al Qaeda and ISIL), but in the end, we need to see that there are also values and everyday life that is also worth defending. If all we see is the opportunity to fight people we've always looked upon as heathens, we’re missing the truth about what makes our country so great.
I think of the words of love and living and purpose with regard to religion, too. There's a lot of great stuff out there when we're not choosing to be holier than thou or asking for coming out on top via the aid of a "please let me" selfishness prayers (and not all prayers are selfish, but this variety are). However, for some people, this isn't true. For these people, Christianity is all about a “snuff film” (be it The Passion of Christ or the obsession with Jesus’s bloody death to impress upon themselves and others a code of living). Now I in no way claim to speak for a religion (since I'm in no way capable or interested in that), but it’s like we forget the words of the living Jesus or the possibility of resurrection, choosing instead to focus on instruments of torture and days of brutality instead. And yes, the crucifixion is a big part, but what's more important is who that man was (at least if you claim to subscribe to any of these groups who fall under the Christian umbrella or buffet). 
I think back to a Christian day care center where I helped a young boy who had Autism, and how one of the workers would show his kindergarten age classmates miniature mockups of the nails (which were part of some game). I couldn’t see what good it would do them to contemplate this torture, but I held my tongue (I like working and making $ to pay my bills) as the 60-something woman explained what Christ went through for us and them, even though they were 5 or 6 and didn't need these nightmares to understand God's ways and love.
I think about this today, and I wonder where making a better world and sharing love and happiness for this time on earth are. I think about people who say that good deeds alone aren’t enough to get in good with the big G. I contemplate that and I think about “grudges” and how people just want to fight and hate and divide themselves off from others who can’t get with their politics and theology. I contemplate that way of life, and I just can’t accept it at all.
And I think about how 9/11 just exacerbated this whole situation.
This brings me back to our 9/12 attitudes on 9/11 or pretty much anything that represents that moment of great change. As this is a Parkinson's blog, I can reflect this attitude to that. For instance, if I think about my day after diagnosis approach to Parkinson’s. I can wake up miserable or I can make a better world for me and all others with my predicament. I can hold a grudge against PD, or I can choose to live life. If I think of 9/11, I can think that we can eliminate evil to create a better world, or I can carry out more wars with no path to victory or fulfill vile, racist sentiments. On a smaller scale, I can hold my daily life's grudges against individuals and this can lead me to hating and hurting others with my thuggish mentality, or I can work to solve my problems like an adult so all people can just get over and through it. In the end, I can look to my life’s philosophy, and I can shove its exclusivity and violence down people’s throats with the threat of some real or metaphorical Hell, or I can take its living tenets to make a better life for me and others (in this, accepting Christ’s teachings instead of just saying that I accept God in a moment of “checking the box” and my allegiance to him, without good deeds, is more than enough).
That said, here on 9/12, I’d rather focus on what goes into making a 47-year relationship work than focusing on how someone upset someone else 36 years ago. Sixteen years after 9/11, I don’t need to watch a historic plane crash to feel for tragic loss of the victims (those 2977 people are very real to my sense of history and humanity). That said, those events are past. If we haven’t solved these issues in 16 years, what difference is 1 to 100 years going to make? We need more Wilma Derksen's out there than angry thugs.
If you’re still here and not offended and / or praying for my soul, I’ll sum it up in 4 quotes and be gone as you reflect on what these can mean to you.
1)      Love is a good thing (ME!).

3)       (CARL SAGAN)


Tuesday, August 29, 2017

Appalachian Beginnings

            If you’re involved in the world of hiking, like Robert Redford / Nick Nolte movies, Bill Bryson books, and / or are savvy to natural places in America, you might have heard of something called the Appalachian Trail. Currently, it’s a 2,190-mile journey according to the Appalachian Trail Conservancy, who also answer other questions people would want to know on their site.

            Recently, Dan “Knotts” Binde claimed to have set a fastest known time for the trail, doing it unassisted in 53 days and 23 hours, which is about 3-4 times as fast as the usual hiker does it. Some people are arguing this because he isn’t able to submit enough evidence due to technological difficulties on the way, though he does have a fair bit of photos and people who saw his recognizable self along the way. Whether he officially set the record or not remains to be seen, but the fact that he has so many hiking accomplishments shows how tough and disciplined he is to the journey, which is my point in noting this hike here.

            If you should be inclined to hike the trail, you don’t begin at step 1 of the trail. Instead, you hike there on some sort of approach trail for a decent length of time. One way to do this is from Amicalola Falls in Georgia, which adds 8.5 miles to the hike. You could also do all or some of the Benton MacKaye Trail or get to the top of Mount Springer like I did in a way that drives a 6-mile dirt road, which is in relatively decent condition, to get to a 1-mile section of the Amicalola approach into the beginning of the trail. When you arrive at the trail, there are a few markings in the form of 2 plaques, but there is no grand Yellow Brick Road stopping off so to speak. The ending for most people at Katahdin in Maine is much the same way. There is a 4.4 and 5.2-mile hike to the top of that mountain, which is the tallest in Maine.

            I’ve been on some of the Pennsylvania trail, and I can say I know what it’s about. It’s step after step of sweating it out through trees and over rocks. It’s all the way from northern Georgia to northeastern Maine. That’s a haul. It’s through the White Mountains of New Hampshire, Shenandoah Mountains of Virginia, and Smokey Mountains of North Carolina as well as a lot of other mountains, rocks, and trees. It’s endless walking and climbing up and down. There are some roads, streams, rivers, and paths, which need to be crossed. There are people and dogs to encounter through summer heat and spring rains, but there are lonely days of empty repetition as well. There’s exertion and exhaustion. There are campsites and backpack meals. At some places, there are wooden camping enclosures and outhouses. When there aren’t, there are places for tents and trowels to dig cat holes. There are post offices to send yourself supplies, and there are trail towns to get hotels and hostels as well as meals. There’s a fair bit of weight to lose along the way (maybe I should consider a long stretch to get rid of my gut). In the end, there’s a lot to learn and endure along the way, but that’s any journey. The only difference is that people tend to stink a little more after this one, which is more of a problem to hotel owners than hikers.

            And that’s the metaphor here. Life is a journey, but it doesn’t happen along a defined line of time that goes A>B>C>D>E. In reality, step one of the AT could be F, and it might finish at step S, but there are other events that go from A>Z and that's the point of life.
As John Lennon and a former student named Jess Rivera said, “Life is what happens when we’re busy making other plans” (or in her case, something like I needed to be more spontaneous in how I took in life along my grand summer travels). For those of us with disabilities like I have with my Parkinson’s, that journey didn’t begin with diagnosis or the first tremor. Dopamine production slowed down a while before that for me to get to the 60-80% point of neuron loss that caused the tremors to start, so yeah, there was a list of points in the journey, but everything up to that point was preparation for things in much the same way that a thru hike began with training, packing, flights, taxis, and whatever else. Whether it was always a bomb waiting to go off matters not. The fact is I'm here now in the same way I was always meant to be on the trail at the beginning of the month (though I wasn't there to thru-hike).

No matter who we are, we’ve had fantastic endings to our journeys like I believe Mr. Binde had. We’ve journeyed and trained like he did to become something in some way by being on the journey from place J to place K. Maybe that was tech school, and maybe it was college and / or the military. Maybe it was something like my 8-year marriage anniversary that happened on August 15th or my 46th birthday on August 26th

No matter what it was, there were good days and bad days as well as the endless step after step repetition of days. There was sleep / wake up / eat / get down to the business of work / poop / / maybe have some fun / unwind with mindlessness / sleep / repeat. Eventually, we came to mile markers and destinations. We saw the medallions, vistas, and waterfalls along the way. Sometimes, we saw deer, bear, snakes, turkeys, and other beautiful critters. We had our experience and hiked our hike. We became who we were going to be, and we succeeded in spite of injuries and strains while we caught our breath while propping up trees. Like baseball players in a long season, by this point in the year, we are giving 100% while playing at much less capacity than we had at the beginning, let alone when we got conditioned to full strength. It's the nature of the beast.

Nevertheless, we moved on. We pushed forward doing the best we could with what we had in the tank. We had a goal in mind, and we were going to live it out to the fullest, which is what we do, no matter who we are or what obstacles we have going against ourselves to get to point Z. For that, we’re doing OK, even if we’re not 100% OK. Like I said, it’s what we do, and it’s how we keep each other going, whether we’re a person, like me, who has Parkinson’s or we’re a 60 mile a day thru hiker on a never-ending mission to keep ascending, traversing, and descending to show accomplishment and meaning.
Again, that’s the metaphor of life for each and every person in the world.
As for the reality, it’s all about being on top of our mountains and journeying to the next awesome accomplishments. No matter what, remember that it’s all about hiking our own hike and that slow moving is still moving. You’ll never get there unless you start.

Monday, August 28, 2017

When Your Medication Doesn't Work: Not Being Willing to Deal with the Side Effects

            For all too many people, when they contemplate medicine, they seem to think that if it works for one person, it will work for every person, and frankly, that just isn’t true. The reality is that there are side effects and the “just doesn’t quite do it for me” effects of some medicines, and when this happens, people get bummed because they think that medicine and medical treatments help everything.
            "It must be the doctor’s fault. He or she has no clue what he or she is doing."
            Frustration and anger set in, and it becomes time to take to the Internet to complain or go to the lawyer’s office to sue for malpractice! 
“You wasted my precious time, and since I’m not getting better, it’s time to take it out on someone.”
After all, this is America, Land of the Lawsuit, so just remember, we’re only one frivolous lawsuit away from retiring. Besides, Powerball odds are too great (1 in 292 million) to cash in on that $750 million grand prize someone else won. We need an easier solution.
            Nevertheless, for those of us with ethics, this solution isn’t a solution. Besides, when we work in the helping people with issues / concerns or medical professions world, the training program demands that we help people understand this. At least I saw this a few years ago when I worked in the autism environment. As caregivers, we have to help our patients and their families understand this. Thus, it becomes time to face the truth that getting well for long-term concerns or even some health issues is a learning game.
Often, we faced this same thing with our diagnosis. We went through the Choose Your Own Adventure world of ruling incorrect things out to get to the right things. What is the most likely thing that we are likely to be diagnosed with? What is the actual thing we are enduring in this sickness / condition?
For many people, this process goes like some variation of this:
Get our vital signs taken. That’s easy. Go get bloodwork drawn. That’s a little invasive, but it’s nothing we haven’t faced before. Go face down the big metal hoop a joop (should we need a doctor to prod us after we have a lab tech poke us). That smarts. Go get things inserted here or there. Tell me you love me before doing that. Really! Go to the hospital for additional strange testing. Quit that stuff! You’re hurting me. Spend time getting more tests. This cost is really adding up! Get to the frickin’ point! I’m sick of waiting for an answer. I need to send you to a specialist! I know we’ve been having you go to various labs and offices, but I’m going to need you to go to Dr. X for Y in the hopes that they find Z because we seem to be at the end of what my general training can logically deduce. You know; I really never liked / used to like Algebra, but now I really hate this crap! Can we get this stuff figured out? I only have so much sick leave / patience / sanity left. Welcome to Dr. X’s office. We’ll need your co-pay of A dollars. Does my insurance cover this? Yes for some / yes for most / yes for all since you’ve second mortgaged your house to pay the deductible of the mega bucks we’ve already asked for / no because it doesn’t feel like it / no because your local legislators decided to let the state have the right not to / you don’t have insurance, you poor fool.
Right now, I’m in the phase of work and figure this out, so I’d like to say that I know a little about this and the sane way to react to it. Thus, I essentially waited from Friday to today to call back the doctor’s office to say, “The meds aren’t working. Can I get some new ones (without scheduling an appointment to pay $40 to just get one that might)?”
Fortunately, the doctor said yes, so I am now on Artane instead of Amantadine. For the better part of the last 4-5 months, I had been actively taking Amantadine twice a day to treat my tremors. I could have gone 3, but I already wasn’t sleeping much (up past midnight most nights, and only sleeping 6-8 hours when I did), so 2 a day was enough. I also had managed to concoct a rash called livedo reticularis, which was kind of a raised skin thing that was part of the experience. However, it started to itch, so that was annoying. Also, it got purplish and started to look like spider webs, so that really sucked. While it wasn’t as bad as this picture (which is NOT ME), it was getting there. In the cold, it would get more spiderwebby (I know I’m just making up words, but like Bobby Brown, that’s my prerogative). In the warmth, it would go away. Anyway, I was none too impressed, so I made the call.

Now, I’ll be heading to the pharmacy on the way home for my 3 a day, 1 milligram medicine, which I hope works better.
Drugs Dot Com lists the following:
If you experience any of the following serious side effects, stop taking trihexyphenidyl and seek emergency medical attention or contact your doctor immediately:
·         an allergic reaction (difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives);
·         fever;
·         fast or irregular heartbeats;
·         anxiety, hallucinations, confusion, agitation, hyperactivity, or loss of consciousness;
·         seizures;
·         eye pain; or
·         a rash.
Other, less serious side effects may be more likely to occur. Continue to take trihexyphenidyl and talk to your doctor if you experience
·         dryness of the mouth;
·         large pupils or blurred vision;
·         drowsiness or dizziness;
·         difficulty urinating or constipation;
·         nervousness or anxiety;
·         upset stomach; or
·         decreased sweating.
This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

            So yeah, here’s to a new experience with a new med. Hope this one is a little better than the last or at the very least that my hallucinations are at least set to the tune of Jimi Hendrix’s “Axis Bold asLove” CD. I know I'll at least enjoy them if they are.

Friday, August 25, 2017

On Turning 46 - Happy Birthday to Me (August 26, 2017)!

            When we’re kids, we tend to look forward to birthdays, especially the milestone ones. We get a clown party or a bouncy house. We get the right to invite friends on a cool outing where we get lots of presents and a memorable time. We get to feel older and special when we get the double-digit birthday (10) and the teenage birthday as well as the old enough to drive birthday (16) and the legally an adult birthday (18). Then again, it’s more about being able to legally consume alcohol (21) for most people regarding milestone birthdays, though old enough for school (5 or 6 depending on the month of birth) is an exciting birthday, too.
            For little guys and gals like my nephew Dylan or my niece Lydia, they get to hold another finger up for how old they are. I may not have enough fingers or toes to do that anymore, but I see where it’s special for them.

            We get to blow out candles and make a wish, or if we want, we can hire a kid like Dylan to do it for us. Thus, even if it’s not theirs to celebrate, it can still be theirs in part.

            After we turn 21, birthdays are still relatively exciting celebrations for a while and then they turn into subdued gatherings. Either way, it’s a chance to go out and be the king or queen of all things. I thought 30 was a good age to reach since it represented a mark where I accumulated a fair bit of wisdom to be who I was going to be. I had successes and failure. I had experienced love, lived in another country, joined the military, mourned over death, graduated college, obtained a full-time job with my degree, and screwed up enough to learn how to come back from it and stand on my feet. I had seen happy days and not so happy days. I wasn’t an expert, and I didn’t have everything figured out, but I was getting there.
            Ten years later, 39-41 pretty much sucked with that whole middle-age crisis thing going on. The Jackie Robinson birthday (42) saw me getting it back together again, and the last 2 birthdays, the Reggie Jackson birthday (44) and the Pedro Martinez birthday (45) have been pretty good, which brings us to the Lee Smith birthday (46) on August 26th. He was a relief pitcher for many years, who did pretty well at an over-rated position. As a result, he was considered for the Hall of Fame, but never quite made it.

            This year, I watched my dad not celebrate his 70th birthday. I get it. Who wants to think about that kind of a milestone (especially seeing as he was having issues with arthritis in his lower spine)? I’m sure 71 will be better now that he’s had a chance to digest septuagenarian status in the same way he enjoyed turning 60.
            Not wanting to be President of the United States, 35 didn’t matter much to me, but other than being able to apply for AARP or to retire, there’s really no other age restricted things left after 21, so we go on and just hope for a weekend birthday rather than to have to celebrate on a workday (i.e. get the rescheduled birthday celebration card). This year, I get a weekend birthday. I feel a lot of pressure to make it a good day, but I think I can make that happen. Oh yes, I can.
            As for my special day and me, I share a birthday with 3 people who I’ve met. I also share a birthday with Mother Teresa, Melissa McCarthy, McCauley Caulkin, James Hardin, Chris Pine, and Branford Marsalis, who really wailed when he played “Eyes of the World” with the Grateful Dead (I’m just saying).

            Approaching this day, I always think about who I am. I think about what the birthday sounds like. This year, I would say it sounds like Jason Isbell, Fleet Foxes, the National, the Front Bottoms, and Modern Baseball.

            I also think about what it reads like (the Kevin Hart autobiography). In it, he's really funny, but it's a great feel good self help book, too (if you don't mind his F bombs and love life in there). He has lots of lessons on success and perseverance and being raised by a single mother who kept him on the right path. At one part, he says:

            "In most action movies, one person rises out of a humble beginning to discover that they have been chosen by destiny to save the world. But that's not how it works in real life. You rise out of your humble beginning to become part of a community, and it is only together and as equals that will save the world."

             I like that... a lot.

             You can find more advice from him HERE. This is great.
            As for what my birthday looks like, well I'm binging on Breaking Bad. I'm in the final season, and it's really getting good now.

            So the question for me becomes, "How did I get here" to age 46?

            I think about where I want to be in the coming year, and I think about how I want to be with my wife Heather, happy and productive with no real extension of my symptoms to a place where I have to acclimate myself to a life with additional things I can’t do just yet. I want to spend time with family, travel to neat places, hike at challenging locations, write my novels, experience special moments, teach people how to write well, and enjoy life. I want to keep being me. After all, I’m that person first.
            Turning 46 leaves me with mixed feelings as this is a time to reflect on who I have become in life. While my symptoms have existed since at least 2011, this is my first official birthday with Parkinson’s. As a result, my feelings toward several world issues have changed dramatically. Here, I can see my life philosophy and ideology changing. For that matter, I can see a lot of the world’s ideology changing as well. That’s good and bad.
I’m not going to turn this part into a full-blown venting (besides, I already did that a month or so ago here), but I will say that my concern for healthcare, something I am fortunate to have, now reflects my commitment to this new life’s lesson that Parkinson’s (and my time with Lyme and spondylosis, and situations I've seen with those around me) has taught me. The fact that people need this valuable system for all of their conditions, both the previous ones and the ones that are quietly waiting to blow up like mine did when I hit the magic number of dopamine producing cells damaged, is something I currently speak out and advocate for. This is not something that cannot be left to chance. As a result, I can and do advocate for awareness, preparedness, and defense of what we have. This should be one size fits all, instead of left for legislators to decide. Young people, remember, don’t cheap out on your insurance, no matter what it costs or what you think you need or don’t. Medical care is a good thing. Here’s to the brilliant, compassionate people who provide it for us.
I also think that society needs a system in place where people are protected from impact should things blow up medically, financially, or emotionally, as they have for many of my fellow Parkinson’s warriors (as well as other conditions and situations, too). Remember, it’s not just me (or you or your family member or friend) that Parkinson’s (or some other condition or situation) is going 12 rounds with. This affects my wife and my extended family as well as friends who see me go through this (as well as your extended network). When the poop hits the fan, it’s important to have life insurance and protection against disability. I know that sounds like focusing on death / dismemberment / disease, but it is. Insurance and government programs should help protect people in the same way that borders and the military protect people’s safety. Even if you’re young, if you get offered coverage, don’t turn it down. Insurance is for what if. When you need it and don’t have it, it’s too late. This isn’t something to leave to crossing fingers.
Also, I have always felt people need natural places to play. Now, I contemplate how spiritually, physically, and emotionally recharging they really are as I enjoy all of my time between the trees (as I will when I go waterfalling in the Poconos tomorrow). I don’t always get it, and there are times where my Parkinson’s exhaustion overtakes my ability to get there, but when I do, I feel good (as James Brown would sing). Whether to remove the rust from my knees, to enjoy time with others, or to see natural beauty, the outdoors has something for everyone (as my friend Neil writes in his blog), so we need to care for the world and to preserve its beauty. In a time where 3-4 natural monuments will in some way be affected by legislation (not as bad as it could have been, but that being said, a little cancer is still cancer), we really need to rethink short-term solutions. Society as a whole needs to start focusing on longer term plans instead of taking out anything that could be deemed progressive, tree-hugging, liberal, or some similar term. There are solutions out there. People just need to be motivated to see their value.

As someone with Parkinson’s, I don’t want to feel like a throwaway person, and I don’t like living in a throwaway world where cost-cutting, prejudice, and outright disrespect replace value. I don’t like thinking about lying, exaggerating, hypocritical, and aggressive leaders (some more than others on both sides who are equally to blame) leading to issues all over the world. Charlottesville and the response to it really dragged me down. Leadership is about providing comfort, not fuel for the fires of personal tirades. Additionally, trading First Amendment freedom for the right for racist threats to exist just confuses me (as does supporting failed or adversarial causes). It’s one thing not to know what you’re doing is wrong, but to be told that it’s wrong and to keep doing it just shows an immaturity that is counter to all we as a people are. Fighting violence with violence isn’t the answer. At some point, people need to unclench their fists and not go looking for a fight, no matter what the reason (and the doxing, tear gassing, urine+feces throwing, and retaliations of ANTIFA don’t excuse the “nobility” of their cause of fighting against evil). This is called maturity, and as we get older, we’re supposed to get more of this.
I don’t want to write long-winded diatribes that focus on the negativity, but I don’t want to bury my head in the sand and not stand up for the right things. In a world where we are getting to relive the Cuban Missile Crisis with North Korea while having a pissing contest with Venezuela shows an instability that stands counter to all we can be as a people. I don’t want things to be us / them / the people lost in sports and entertainment who have no clue what’s going on or could be happening (though I'm into both). I’m in the prosperity and happiness game, and right now, there seem to be a lot of things acting on the happiness of everyone..
            Sitting here now, I counter all of this by saying something positive: I believe that love is a good thing. Love and respect are the only absolute truths there is (not liberal / conservative / moderate / whatever ideology). I believe that we can and will get through much of what is going on because there are people willing to work for it (like I tell my wife when things come up in our lives: it’s what we do), but I worry what will happen to all that is around me in the meantime.
I see so much sadness and conflict in what exists around the world (part of the reason for my 4 day hiatus from Facebook – the other one is working on my novel). Throughout my day to day life, I see so many people whose lives have suffered due to their choices and circumstances while playing out the moments in my daily existence. I see so many people who need a hug or a like or someone to believe in them. I see so many batters with 2 strikes in their count and a hurler with a 102-mph fastball and pinpoint accuracy on the mound. It would be nice to rescue them from uncertainty, loneliness, or doom and show them how education could help them from being left behind, but they need more help and connection than I can give them (and besides, I still have a lot of personal work I need to do on my life). It would be nice to have the resources and opportunity to give them all hope, but sadly, I know that will never be there for most people, though I will do my best to be there in my immediate circumstances.
That being said, as my honor’s student Ashley said at her presentation when questioned about her plan to educate women in the developing world, “I’d like to try.”
            So at 46, I feel optimistic about people working together, but I feel burdened by the divisions in the world. I feel optimistic about the love I have from my wife, but I worry about our future that is coming down the pike, ready to strike the earth like some lost meteorite that hit my brain or gut who knows when. I am buoyed by a brilliant research mind that our scientific community has, which can possibly create a cure or ability to freeze Parkinson’s, but I am confused and bewildered by the enormity of unsubstantiated “Facebook studies” posted in front of me.
As I sit here with my tremors creeping back and forward from the recesses, I’d like to think that progress will come quickly. It may not help me, but it could help the next generation. I’d like to think that things like the Amantadine rash (livedo reticularis) can be made to go away so I don’t have to put up with weird looking legs and the tiger stripes I have when my calves get too cold. After all, I’ve got some nice calves (please note - these are not my legs, but the picture does show how the condition can intensify)!

Most of all, I’d like to think about all of the people who have been there for me, either in real life or digital life (and that’s you reading my blog(s)). It’s been a wild and weird and wonderful 46 years. Here’s 46 more!!

Happy birthday to me (by Cracker)!

Or enjoy these 2 NSFW birthday songs by 50 Cent and 2 Chainz with Kanye West. It's good to have students half my age to impact me with their musical tastes.

Tuesday, August 15, 2017

Falling in Love in a Coffee Shop

                In case you’re like me, a guy who knows very little about wedding customs other than the ones I was initiated to at my wedding on August 15, 2009, you might not know that you are now on the hook for a wedding gift. I’m not exactly sure what that entails, but it does not include:
1)      The ring
2)      The engagement ring
3)      The honeymoon
4)      Coupons for a free body massage
I say this now because someone in your life may be a young and non-understanding man like me, who will someday find himself (or herself – I’m not ruling that possibility out) in a predicament where it is proper and necessary to have said gift.

See, on August 14, 2009, I was given a wedding gift: a Roger Maris rookie baseball card in PSA 8 condition. That may mean nothing to you because you don't care about baseball, let alone baseball cards, but let me tell you, it meant something to me. For the majority of my early relationship with my wife, I would playfully say, “If you really loved me, you would get me a Roger Maris PSA 8 baseball card.” As conditions go 1-10, 8 is really good. Since the card is from 1958, which was when he played for the Indians, a gem mint 10 is like finding a super-expensive needle in a haystack. There are a fair bit of 8s that cycle around. They’re kind of your average A grade. Very pretty to look at, can’t complain, but if you wanted to, you could. If you’re a baseball card collector, it’s basically the card isn’t centered and the corners aren’t as sharp as can be. It's also graded by a tougher grader, so it means a little more than the rater gave out 8s like they were participation trophies.
Anyway… I’m sure I’m boring you with baseball card details, so I’ll skip to the point.
We had just finished our rehearsal, which was where I wore a bow tie to look like Indiana Jones when he got married because… why not? It’s my rehearsal, and I was rocking that bow tie! Heather and I were upstairs in her sister’s guestroom, and all of a sudden a gift bag comes out. I froze, completely caught off guard at the moment. It wasn’t so much what it could be, but it felt like I missed an important memo. When I opened the bag, I looked in and saw the little cloth bag, and I knew what it was.

I had never meant to think I would or should get the card, but there it was, standing in front of me. I picked it up (and I rarely pick it up – too precious and sentimental to me - though I will tonight), and I saw Roger Maris, 61 in 1961, and I couldn’t say anything. I was just so overwhelmed to get something so special to me.

See Roger Maris had been an obsession since McGwire’s summer of 70 in 1998 (I saw 55 in person), which changed my life, and now I had his rookie card. Like Roger’s wife Patricia who supported him through his stresses and strains that occurred because of a media obsessed with making him feel unworthy of surpassing Babe Ruth’s 60 home runs in a season record. Eventually, he did it, but in the meantime, he took on so much inner turmoil that he lost his hair from anxiety issues and even moved to walk away from baseball, though his wife talked him back into the game. To me, that ability to be a rock and a cheerleader are key building blocks of true love.
Oh yeah, and I highly recommend watching the Billy Crystal directed 61*, so named because Roger received an asterisk from Babe Ruth’s ghostwriter / MLB commissioner for not breaking the record in the same number of games.
After looking at the card, I didn’t know what else to say, so I said something about giving Heather her gift the next day. In truth, I needed to go out and get it.
Unfortunately, on that evening outside Toledo, Ohio, I couldn’t think what to get her other than an iPhone. Unfortunately, seeing as I knew nothing about purchasing cellphones, I found out how hella expensive they are, so I finally ended up at Home Depot, where I purchased a Disney princess key. With that, I would give it to her with a redirection of money to be put into a first home for us (we were living in an apartment at the time, but in early November, we would buy our first home in Amish Paradise, Pennsylvania).

When I went to be with my parents, sister, and aunt at the hotel they were staying at (so as not to see the bride before the wedding), my parents knew nothing about the wedding gift custom, but my sister did. The next day when she saw my now wife, she explained that I didn’t know about the new-fangled tradition. It was never an issue, but it was something that was better addressed at the moment since I felt really guilty about it.
All the same, that was after Heather and her family all arrived at the botanical gardens, and we had the wedding and out pictures afterward, which were taken by her sister Jen. Personally, I think she did a heck of a job in the hot sun of that afternoon. Heather’s whole family did a great job with cooking and decorating that day as well (and yes, everything to include the flowers on that cake are homemade). It was an awesome moment, and it was so great to be married on that day, but dang… it was tiring!

When it all ended and the gifts were opened and packed up to go back to Pennsylvania with my parents, Heather and I set out for our honeymoon suite. We were exhausted and hungry, so we went out for a fine gourmet dinner at Arby’s. Yes, Arby’s; they have the meats.

It’s funny to think about it now, but other than getting too hot from the heat of the hot tub and tipsy from the champagne, it’s memories like that, which really make a marriage.
Since then,  we’ve made lots of other memories. With Heather’s gifts to me (deep sea fishing, glow golf, and laser tag Groupons), we’ll do other things to make great memories, too. It’s easy to do that when you’re having fun, but it’s harder when the illness part of in sickness and in health comes about. Fortunately, I have an amazing woman to stand by me, as I stand by her in the same way, through all of the things that comes with Parkinson’s in the past, present, and future. It’s the new normal, but that’s OK.
We’ll get through. It’s what we do (even if I don't have any more things to pester her about doing to prove her love since she bought me a 3 hour back massage (in the form of 2 1.5 hour back rub groupons) and made me a bundt cake with love for last Christmas).

And besides… we’ve got Arby’s for dinner tonight.
So just like our wedding song said, "I think that possibly maybe I'm falling for you..." still and always. Here's to a lot more great years, Pookaford!