Writing a Biography: These Last 4 Years
When you stop and think about it, 4 years is a long time. That’s 1,061 days since diagnosis to scribble in my biography. During this time, Parkinson’s has caused me to have to redefine myself. Nevertheless, as the saying sort of goes, “I have Parkinson’s, but it doesn’t have (all of) me (yet).” Thus, I still get to choose to roll Sisyphus’s boulder up the hill, so Albert Camus would be proud.
It hasn't been all good or all bad; that said, it's been an experience.
For this, my greatest learning since Avalanche Day is that, in the moments I can affect it, I am the person who will define me. That's not always, but it is, so yeah, I got that going for me.
For instance, I may not teach anymore, but I still educate people. I still use my life learning as an example. Even when I go to the doctor’s office, I am a patient offering subjective experiences. That said, the physical and online classrooms are my past. So it goes.
Besides, there's no homework to grade in this option!
The Parkinson's warrior training others
When it comes to change, I think of Muhammad Ali (a person with Parkinson’s) who once said, "A man who views the world the same at 50 as he did at 20 has wasted 30 years of his life.”
Why would anyone want to stay the same or do the same things year after year? Of course, I didn’t want it to take a horrible disease like Parkinson’s to make me realize that life is short. I need to be a better person. Now, I'm doing a lot of different things I'm finding that I also enjoy or that I always meant to enjoy, even if I lost some things I really enjoyed.
Yes, today I'm reminiscing about Meteora, the Uffizi Museum, the Athens Archaeology Museum, and the Sistine Chapel, while contemplating poetry I was reading the other night. This was a pursuit I hadn't accomplished in over a decade. And I was an English teacher!
Some days, I'd still rather be in a natural cathedral, but so it goes. Anyway, I don’t like the other choices, so I’ll flow with this acceptance.
Besides, if my wake-up call took something this drastic, then Parkinson's means something more than just my neurodegeneration. Advocacy? Self-actualization? Helping others? Pushing through.
In life, there are many repetitive drives to and from work, occasionally punctuated with success and failure. Some moments, like this one, have changed me more than others. Most of our lives, even when lived at their fullest, are like this. Yes, kids, there are days for working, shopping, sleeping, and fulfilling obligations. Even when you can choose your own bedtime.
What you do with those life lessons is your choice.
Choose wisely and see all those breathtaking places while you can.
Nobody promises a bouncy house
When we look back, we will find we have undergone changes after experiencing the world through observation and interaction. Here, we must redefine ourselves. Sometimes, this new us is big and scary, but even good stuff can be scary. Be it a new baby, relationship, job, or house, it can all change the tone of the biography with a moment’s notice. Parkinson’s changed me, but I changed myself, in response.
Through it all, we need to come to an understanding of the new “I.” To do this, we can compare our changes to others. How did they handle them? We might list our own changes. We need to see what it means this new something is. Understanding this new normal helped refine the coping skills I need for Parkinson's survival.
The natural timeline of life
So how do I feel about this new version of Parkinson's me?
Sometimes, it’s like when David Byrne of Talking Heads asks, “How did I get here?” Other times, it’s as if I’m Dewey Cox stumbling (with Parkinson’s gait) into “another chapter of (my) life.” At its best, I smile and breathe in my new outlook. In darker moments, I mourn for what I lost or never attained.
Good and bad don't last forever, but the bad times are always too long.
But tears change nothing, so I move on
When it all comes down to it, I’ve found that many times, the things I never had hurt more than what I had in my sight. I was never going to dunk like Lebron or play guitar like Hendrix, so I'm not upset those options aren’t available. They’re water off a duck’s back.
The bucket list losses hurt. Sometimes we do give up the moon. Other times we give up our man card or youth. I know. It sucks.
49 is a late age to start skateboarding
Not that I want to skateboard, but you get the point. Some things come to us when we’re ready for them. Other opportunities elude us all together. Still, I’d like to think I’m fortunate for what I have done.
I am married to an amazing woman. I’m a part of a solid family. I wrote some books, and I’m going to continue to do so as long as my fingers let me. I've traveled to 43 different states, Puerto Rico, and 13 countries outside of the United States. I even lived in England!
Great concerts, exciting baseball games, re-experienced history, and myriads of amazing landscapes… Been there! Heck, I saw Nirvana before "Teen Spirit," and I've been to the Wave. Sure, I’d love to see more, but no matter how much I see, I’ll never be able to see it all.
This biography was never going to be all-encompassing, even without Parkinson’s. Why cry over spilled milk; it's still spilled.
Besides, everything I would have done differently would have subtracted from something I did after it.
No man is an ageless cossanova
My Parkinson’s bomb was always going to blow. It's in my genes.
From non-swinging arms in 8th grade to fatigue now, genetics always brought me here. For the most part, I have to say, I’m happy with here, mostly. That said, it would have been nice if my baseball cards profits had continued for at least another month this summer. There were so many vacations and home improvement opportunities I could have accomplished, but…
That’s the thing.
Life happens and circumstances change
How do we just “accept loss forever,” as Jack Kerouac advised us? We’re all going to get old. Childless me was always going to have a “dad bod" and white hair. Frank Thomas and low testosterone commercials subliminally speak to me.
Yes, some loss hurts more than other losses. I’m still moving, even if I’m not hiking a waterfall trail this year. Adjusting interests? Check. Staying on the Parkinson’s page I’m at and not dwelling on the distant future? Mostly.
Sure, Parkinson's knocks me around with free toasters for playing. Still, I'm Dan, even if that Dan is physically diminished from when he met dystonia after hiking 204 miles in 30 days to train for the Pacific Northwest in August 2014.
Besides, I lost that trip, too. Some things are more important.
A series of up & down times since my Parkinson's diagnosis
These last 4 years of the biography, the “Parkinson’s Years,” have definitely been a series of up and down times. Here, you’ve journeyed with me to hear my story of how “my neurologist” told me what was to come and what did come. For statistical purposes, I’m 1 of a million American people with Parkinson’s.
Life is a shared experience
Life is a shared experience. We are not isolated islands. That’s why we need kindred souls to guide us. For as much as we seek individuality, we want to know that we aren’t the goose trying to find a chair when "it" is done labeling ducks.
When Parkinson’s comes along, it changes the hand that life dealt us. Parkinson's gave us new cards, so we are now playing Poker with an Uno deck. It’s not easy to function like that, let alone live our best biography, but I hope by sharing my life with you, as you do with me, that I’ve let you know that people can fight their own fight, against that scumbag Parkinson’s.
Do you participate in a support group for PD?