In life, things push us around. It’s an unfortunate part of the plan. We don’t have a choice in the matter. Life is filled with conflicts. As writers, we are taught that these conflicts are things like person vs. self vs. others vs. organizations / institutions vs. nature vs. God, etc. As Parkies, we are faced with a beast of a condition, whose one aim is to progress to a point where life is filled with shaking, slowness, physical + mental disabilities, falls, freezing, forgetting, and depression. What's more, its effects mess with the emotional, mental, physical, and financial worlds of all those we love, since they get to come along for the ride.
In much
of my life, I’ve found these conflicts. Many people and I experienced bullying when it meant
something more than being told something we didn’t agree with (like getting a B on a paper instead of an A). This is not to say that bullying like that doesn't exist or that people who get upset are snowflakes. This is far from true. However, in a world of 140 characters or less, people feel bullied about everything.
How dare I have to listen to the political views of the punk band Social Distortion. Just play your songs that have NOTHING to do with politics and let me get my mosh on after I instigate a made for social media fight with you.
How dare you not treat me like the king or queen, McDonald's? I will now bad mouth you.
You want real bullying... read Rescuing Riley. Zachary Anderegg's story is a fascinating account of overcoming bullying to become a US Marine and compassionate man.
I’ve seen people call me any name they could to provoke a fight so that I’d retaliate in a way that would allow them to stomp me if I dared try to fight back.
How dare I have to listen to the political views of the punk band Social Distortion. Just play your songs that have NOTHING to do with politics and let me get my mosh on after I instigate a made for social media fight with you.
How dare you not treat me like the king or queen, McDonald's? I will now bad mouth you.
You want real bullying... read Rescuing Riley. Zachary Anderegg's story is a fascinating account of overcoming bullying to become a US Marine and compassionate man.
I’ve seen people call me any name they could to provoke a fight so that I’d retaliate in a way that would allow them to stomp me if I dared try to fight back.
In addition,
I’ve wrestled demons in myself for not being good enough or those that plagued me in my younger days when I didn't feel good at all. For
much of my life, I’ve lacked confidence in a lot of things. Whether that was
getting awards or friends or a better job or approval or a girlfriend or even
just through the day, I’ve had lack of confidence filling my head.
Somewhere
in this, I found Laurence Gonzales’ book Deep Survival and a lot of positive
role models and heroes and started to change. I’ve chosen to find ways to
survive and control my own equation. There's also Surviving Survival, which talks about how to come down after our ordeal.
This
equation control is something I talk about when helping students with resume
writing.
“What
makes you better than 99 other people who want the job? Right now when you aren't looking for work actively, you control
the equation. You get to think about what goes on your resume and make it pop. If
you don’t have it, you volunteer to get it, or you learn it. Now is the time to
be ready for the interview.”
When
I say it, it makes sense to (at least some of) them, and many of these people already had the
confidence and the skills, so it’s not hard for them to get all Nietzsche triumph of the self over obstacles. These people just needed the storytelling expressed out from a strong verb with numbers to tell the Anecdote of the Future Great
Employee. I’m sure I helped them succeed because I showed them what they were,
but really, that strength was in these people all along.
Nevertheless,
a part of me knows that I aided in this endeavor with my teaching and empathetic expression of life experience.
Here
lies the major conflict in my life. I can tell other people about what they
have, and when I do, it’s all person-building. This isn’t because I’m working
on my karma. It’s true that I am, but deep down inside this person who is now
me, I want to see people win the games they’re playing. It’s not that they
couldn’t do it without me. It’s just sometimes they need to be told, such as
these resume writers or my student who was looking to transfer her memories of Central
American missions work to the page OR the teacher whose story was on the page,
but he didn’t realize the awesome story he had going.
Stuff like that is fun to connect to. I love those things. They make me feel better than “rescue me; I’ve got 2 hours until go time, and I haven’t spellchecked this paper, but that’s your job, right?” I know that’s the nature of some education and life (and things the younger me expected of others), but it’s just not the same inner feeling of joy for those people showing the way.
Now 4 months removed from my last class and 9 months since my last day tutoring, that's something I don't miss. Nevertheless, I do miss the students who taught me and learned with and from me. If only there was an option for that, which didn't involve grading papers.
Stuff like that is fun to connect to. I love those things. They make me feel better than “rescue me; I’ve got 2 hours until go time, and I haven’t spellchecked this paper, but that’s your job, right?” I know that’s the nature of some education and life (and things the younger me expected of others), but it’s just not the same inner feeling of joy for those people showing the way.
Now 4 months removed from my last class and 9 months since my last day tutoring, that's something I don't miss. Nevertheless, I do miss the students who taught me and learned with and from me. If only there was an option for that, which didn't involve grading papers.
For
me, I still like those moments where I succeed with others. Nevertheless, I never did like redirecting through when I have to ask questions like, “How can I help you if you haven’t
done the work?” Hopefully, this learning and redirection inspires them to do
the work, but in many cases, I’m not sure if it does. Additionally, it takes away from learning time.
The
same is true with me. Sometimes, I’m making me better, but other times, I’m
still struggling to make me connect on many levels. Sure, I have an awesome
wife who loves and supports me, now, and I work for a living, and I
have friends as well as a positive outlook, but it’s not like I’m not afraid of
heights and rappelling down rock walls like my wife. It’s not like I am a motivated body
builder / man of mountain climber coolness and a rock-hard body with persona to match
like Mark Twight (maybe after I get some time and it stops raining and I'm done with my book, I’ll start with
that). Hell, I’ve got 90 extra pounds around the middle. Does anyone want it? You
can have it.
So
is it wrong when people look at me crazy when I tell them I'm positive about
this crap fest I’ve been dealt, the one that they tell me they’re sorry I have
(I appreciate the sentiment; I know it means love, but to me, it’s an
opportunity to redirect me and advocate for others, and that’s not a bad thing
at all) or joke around despite our conversation dealing with
Parkinson’s disease? Trust me; I’m not going to really charge you with a hate
crime if you pick on me for being clumsy even though Parkinson’s balance issues
keep me from standing on 1 foot without support to slide on my ball hugger
underwear in the morning.
This
is the conundrum I face because it’s the one conflict in my life I can face.
Spinal tap on December 23rd… sounds like fun. I’ll take 2. Jam that
stuff in there. Besides, it sure beats the lethargy, knee pains, and knuckle
pain that’s slowing down my 82 words a minute typing game.
This
me sitting here typing right now wants to be back in the woods. I don’t want to
get worn out every mile on a town rails to trails. I want to do 23 miles around Blue Marsh again like I did before. Sure, Parkinson’s will slow me down, and
the tremors will continue, but I want to know what’s permanent me and temporary
me. I want more opportunities at that before the next stages come and slow down
my game again.
Let’s
get real; I want to kick this crap's butt, and I want to be happy and thrive and
enjoy things for as long as I can. If you’ve got some of your own nastiness
getting you down, I want to send you a hug or positive vibes or show you that
you can beat this, too, with a little inspiration. I can’t hug all of you
individually or “buy the world a Coke today” like Oasis said when they borrowed
a line for the original version of their song "Shakermaker," but know that I feel
it.
Know
that, but know that even though I don’t want you to feel down, I can’t make you
do the Navy SEAL toughness thing of not ringing the bell to quit. When people
get it in their mind to quit, the game is over. Navy SEAL instructors always
ask if the trainee is sure this is the decision that they want. Even if they
choose to go back, it’s said that they don’t last (see Marcus Luttrell's Lone Survivor). They’re already done. They already
quit. Such is life and death and all things in between.
That’s
why I look at what I’ve got and say, “I’ve got 2 choices. I can be up, or I can
be down. I’ve been really down. I prefer up. The other choice sucks butt.”
I’ve
crossed my own personal scum lines. I’ve cried myself silly in the middle days
of 2011 with the early days of my symptoms and middle age and lack of success
and inability to see a future, and I’ve wondered, “Why the hell am I on this
earth? What comes after this pile of crap situation?”
Somehow, it was like then and other times along the way I found that there were more ways to die psychologically and socially inside than just the 3 deaths that both the Mexican and Christian cultures believe we experience.
Those
were dark times, but somehow I got through. I’d like to think it was because I was
meant to do something after it. All of this suffering has to be for something. You may not like the suffering, but the mission is more important than the person. I believe that, too.
Many of us get in this dark place, and we don’t see a way out, but there’s always a way out. God and the universe throw fail safes at us all the time. Sometimes we don’t like our rescue from without because we don’t get to save the universe and score the significant other; thus, we are left to regroup our wounds while eating humble pie, but that’s OK; that’s life. Being on the disabled list isn’t bad if we use it to retrain.
Many of us get in this dark place, and we don’t see a way out, but there’s always a way out. God and the universe throw fail safes at us all the time. Sometimes we don’t like our rescue from without because we don’t get to save the universe and score the significant other; thus, we are left to regroup our wounds while eating humble pie, but that’s OK; that’s life. Being on the disabled list isn’t bad if we use it to retrain.
And
when we think like that, we see the thing is that something will and did get
better when we opened ourselves up to that place (like the time I had to
abandon my post Air Force life in England). It wasn’t always right away, but
there were paths. Did we or I notice them at the time? Like the story of the flood survivor
waiting for God to rescue him, but who chose to pass on the boats that were
going to take him to safety. Here, we often choose to not look our rescuers in
the eye and say, “Yep. I see a winding path to a new me. I’ll take it. No more
backward or down. I may go sideways and repeat stuff I didn’t do right, but I’ll
be like Rocky in frozen Russia, and I’ll retrain old school to kick ass again.”
Instead,
we wait for the magic Hollywood ending, and the whole place just slowly freezes
over leading us to our demise.
With Parkinson’s, I actually feel like I get
something toward a better me with confronting my demons. Somewhere between Michael J. Fox’s “lucky” feeling about getting to live and to advocate and slogans like
the cancer campaign “Fight like a Girl,” I’ve found spirit and drive to not
take Parkinson’s shit. I’m on 23/6, which says I still have doubts and worries,
but I’m working hard to see a good future with what I have.
With
that attitude, it confuses a lot of people. This is both for the person I was
or the person that some people feel should just roll over and cry to get his
pity party because life says we can have 1 (the whole "Harrison Bergeron" make yourself suffer to make someone else feel better about his or her lot in life).
Sorry, at this moment right now (and every other one), I can’t do that, even though I’d like to milk it for 3-hour back massages or bundt cakes with love. Yes, my humor may be a little odd and inappropriate sometimes, but I prefer that coping mechanism to those of the bad old days when I sat around waiting to be trounced by life’s obstacles…
Sorry, at this moment right now (and every other one), I can’t do that, even though I’d like to milk it for 3-hour back massages or bundt cakes with love. Yes, my humor may be a little odd and inappropriate sometimes, but I prefer that coping mechanism to those of the bad old days when I sat around waiting to be trounced by life’s obstacles…
I know humor isn't always possible, but when it is, it's good. That said, there will be those bad days will hit me
like a ton of bricks, too. That’s the nature of our game. However, right now, I
need to be strong so I can carry this positive vibe over to make sure those
next troubles aren’t as bad as they could be.
Right
now, I’m not that 18-year old guy in Air Force Basic Training waiting to fall
on the rope swing before even taking the rope. I’m riding this fire inside me
through the shaking foot and hand and all the other inner symptoms to some kind
of a happy life for as long as the universe and medical science allows me to
keep it.
But thinking
like this seems so odd to people. I’m not sure why. Like I said, maybe it’s the
old me versus the new me, but now, it’s like I have to put out a disclaimer,
"It's not like I have my head in the sand that I don’t have a progressive, incurable degenerative neurological disorder, but I just need to do and be happy with the time I
have left. I know what might be and is coming. I’d just prefer to live happy right now."
Actually,
it’s not like I have to think about what statement I’d make; I do put out the
disclaimer to tell this to people while explaining Azilect versus the enzymes
to create safe passage for dopamine like it was an episode of The Walking Dead.
Malcolm Gladwell wrote a book called David and Goliath. which I used to teach. In it, he talked about how people's lives made them more resilient to adversity. Thinking like this, could some crappy breaks and out of control random incidents not make us stronger to life's poop sandwich?
Hmm...
Denial,
anger, bargaining, depression, and acceptance are the stages of grief. Each of
us face things differently. I’m not all people. I’m just me. Many people have
it better than me, and they still kick Tim McGraw “Live like You Were Dying” ass
that I aspire to do and be.
However,
for those people who are in the first 4 stages of their grief and the pain of
their suffering (or the suffering you feel watching someone else), know that I believe
in you moving to that 5th stage of grief that is acceptance. That doesn't mean lay down and die. It means live as long as possible. Besides, you were going to die before Parkinson's. That hasn't changed.
Just remember, there’s a lot of strength over here. I only hope the words of my essay can encourage you to find your own path over here.
Just remember, there’s a lot of strength over here. I only hope the words of my essay can encourage you to find your own path over here.
Besides,
who knows? For all I’m helping you now, you might need to be the one to
encourage me when I get hit with the next tidal wave that is going to try to drown
me with something I can’t do. When that time comes, I hope you can be my
inspirational friend.
Right now, for all of
us, the key is to spread confidence, to believe in ourselves, and to be there
for others, however long and in whatever way we can. Even if it's just telling people what not to do, we're still helping others learn from our mistakes.
All of these things mixed together are some really good things.
All of these things mixed together are some really good things.
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