Tuesday, September 26, 2017
A Year in the Life: 365 Days Since Adam Named the Symptoms "Parkinson's."
One year ago, tomorrow (September 27th), is the anniversary of the moment my life was completely changed by my Parkinson’s diagnosis. Despite this setback, I think about all of the good things that will be, whether this is day to day fun or Iceland in 2 weeks or New Orleans before Christmas. Having things to look forward to is good. That said, so is perspective.
Today, I write about the 10 most important takeaways that I have from that life-altering moment. If you are interested in reading my initial statement about how I felt about my diagnosis, you can find that HERE.
1) People can be stronger than they think they are. Some people see this as religion (God never gives us more than we can handle). Some people see this as Nietzsche / Kelly Clarkson (What doesn’t kill me makes me stronger). Other philosophies describe it, too, and so do our movies. Philosophies and theologies and movie quotes are a good thing. We choose the ways we will act out the roles we will play. It’s up to us as individuals to choose to ring the bell if we are so inclined to quit. As for me, I’m fighting this with all that I have. I am choosing to live life. We will go on to the end. We will never surrender.
2) I have the best dang wife / caregiver around. Thank you Heather for never giving up (I LOVE LOVE LOVE you so much!!). We will persevere. We’ll make it through. It’s what we do. Here, I have learned that love is a good thing. You will never know what "in sickness and in health" means until you're tested. When you are, I hope you rise to the occasion like she has done.
3) I am incredibly thankful for every member of my family who supports me in this endeavor. There’s a lot of things to understand about Parkinson’s. From what caused it to how to deal with it, they support me. That’s a good thing. I would not be in the place that I am today if not for them.
4) I am aware that “it happens” (as Forrest Gump would say), and that we need to plan for whatever our “it” is. We need to do this mentally, financially, physically, and emotionally every day. This doesn’t mean we live in fear of the sky falling or crying over the dam after it bursts, but just like retirement, a will, and a savings account, we need to understand rainy days happen to us, those we love, those we are friends with, and those people who are our acquaintances.
5) I am grateful for my true friends who support me as I work to understand this diagnosis and place that I am now. I am thankful for their optimism and the support / protection of who I am and what I need to get through the rough moments. This includes their endorsement of a current / future U.S. medical plan that includes protection for pre-existing conditions and a lack of lifetime spending caps. This national law creates a plan where insurance companies truly work to benefit those who pay for and utilize those services instead of finding ways to only profit off them with no regard for what is and what could be (either through price gouging or lack of coverage). THINK ABOUT IT LIKE THIS: If you support destroying a system that benefits 52 million people or wants to change these protections to allow states to randomly choose to remove their support, partially or entirely, essentially, you are saying, “Hey, disability boy / gal! I am actively rooting against you getting better / treated, and I am wishing for your family’s financial destruction that will last long after you die. However, I have a solution. Take these sticks and go out on the ice. You can make a fire that will keep the wolves away for the time being.” To me, advocating for a system that doesn't do this red stuff has everything to do with you being my friend. This isn’t like random superficial differences like you supporting the Yankees or Penn State, wanting to watch The Kardashians instead of baseball, liking to eat at Panera Bread instead of V+S cheese steaks, or disliking walking in the woods. Where those are personal preferences, this is a place where you are saying that my life's condition that I did nothing to cause doesn’t matter and that you don't care that I'm sick and will suffer through the later stages of this. This is like someone saying, "I don't care how much your neurological functions digress." This may sound like an extreme conclusion, but my life is something that I hold in extreme value. With 1 in 4 Americans having pre-existing conditions, think about how many more people are affected by this financially because their family is directly connected to this person. I'm sure everyone out there knows someone with a pre-existing condition. If you can’t understand that humans are affected by expedient and cost-cutting political decisions, I feel sorry for you, and I wonder why you want to be my friend. Really. I also hope you guessed right in hoping that these things will never happen to you or yours because this stuff sucks, and even the haters don't deserve this lot in life (that's why I advocate a cure and support).
6) We all need heroes. I write about a lot of mine. Even if they are smaller or younger than us, we never look down to find our heroes. In this Parkinson’s world, I am thankful for Michael J. Fox, Jimmy Choi, John McCain, Susan Collins, Jimmy Kimmel, and Perky Parkie for what they do to educate and advocate for our country's own good. Whether it’s through blogs, nonprofits, education, athletics, or advocacy for this condition or general healthcare. I am also grateful for the myriad of Facebook groups I am able to participate in. You gals and guys rock!
7) I am thankful that I can still be a husband, son, brother, uncle, nephew, cousin, writer, hiker, teacher, music aficionado, daydreamer, supernatural enthusiast, traveler, and me instead of Parkinson’s.
8) I am thankful that I have learned from my symptoms. Whether it’s empathy, strength, or desire, I’ve been able to keep going. Sometimes, we just need to see life through the eyes of others. It's not about being a bleeding heart. It's about being human.
9) I am thankful for Admiral James Stockdale and Victor Frankl. I know that with the brutal truths that I confront, I may not be getting cured or having my symptoms reversed, but I can push on until a medicine comes or to help create a medicine that can cure the next generation. Here, I am aware that God demands our actions. We can ask him for help, and we can be thankful for what he does for us, but at the end of the day, we need to take the wheel and steer the ship.
10) Life is precious. Live each day fully. You don’t know when Godzilla and King Kong are going to rampage or when Alper's disease could strike. Enjoy other people living their lives to the fullest, no matter how young, old, or able. That’s why we have Big D, Lydia, and Little Zen Monkey. Don’t be jealous about what these people can do that you can’t. Life is all about celebrating the positive, even if you and I can't always do it to the same level (or at all). Besides, there’s lots of stuff that even “able” people can’t do. We can’t all swim like Phelps, dunk like Jordan, run like Bolt, hit like Altuve, or ninja up like Graff. Take those rants of ableism and put them away. It’s your choice to do what you can do and enjoy it while you can (while ignoring the haters). For one, most people don’t feel negatively against you. Those who do don’t deserve a special tag other than jerks (or maybe some profanity instead, but as this is a family site...). The everyday person who sees you (or I) may not understand what you (or I) go through, but it’s up to you (or I) to teach them what’s right. Let them know that you’re a person first (I try my hardest to do this). Let them see your beauty and sense of humor as well as your thirst for knowledge and desire to live life. Surround yourself with flowers or trees to feel good about life. Besides, even if you can’t do mountains, I bet you can find a special trail or path that accommodates wheelchairs and walkers as well as helpers. Longwood Gardens and Amicalola Falls (there's access to the bottom of the main falls from the road) both come to mind. Surround yourself with happiness. Listen to positive songs, but carry the loud, heavy stuff for when you gotta let it out. Find people who give you your props and hugs when you need them. Life is precious.
11) BONUS – Thank you for reading my writing. I’m thankful for all of your traffic and support. Really. You rock! Now, go check out how to blow dandelion seeds with Little Zen Monkey!