I’ve been asked how I stay so positive a lot recently. I think it’s because my symptoms have started to show more over the past few months, giving those who are close to me a glimpse at the progression that I try to resist every day. It’s true that a Parkinson’s diagnosis does bestow you with a bleak future. I don’t deny that the thought of a wheelchair or spending my final years in a bed terrifies me. My body has already surrendered more than I would like in the first two years and the only relief comes from a lifetime progression of medications with their own side effects. Eventually, the pills will lose their effectiveness. Then it’s time for Deep Brain Stimulation surgery, http://www.webmd.com/parkinsons-disease/guide/dbs-parkinsons , which is like the drill we all love at the dentist, only in your skull… while you’re awake. These things are a burden that never fully leaves my mind, and if I focused on them alone, my light would definitely go out.
Just writing that summons familiar dark clouds and starts to darken my mood. The first time I researched DBS surgery, I wasn’t able to sleep well for days. So, how do I do it? Even now, I wonder at times. Am I just in denial? To this, I can honestly answer, No. Not only do I acknowledge my challenges and fears, but I share them very publicly.
So what’s the secret? How does one stay inspired and motivated when life is nothing but storm clouds from horizon to horizon? In the words of the late Greg Plitt, “Life isn’t about waiting for the storm to pass, it’s about dancing in the fucking rain.”. Sorry to put it so bluntly, but that quote delivers the truth with the punch that it deserves. As we so often find when looking for the good in life, be it happiness, courage, or in this case, inspiration, the answer is in changing our perspective.
Many people seem to be disappointed by this. “Motivate me!”, they say. In an effort to do exactly that, I recently produced my first inspirational video. In searching for material for my new project, I was reminded of a very simple truth that I had discovered very early in my battle with PD. Inspiration is everywhere. It is all around us if we simply choose to see it. We are so accustomed to the fact that all the media seems to report is that which is the most horrible in the world, aside from the token fluff story.
That should empower us! It’s up to us find our own inspiration. Here’s your first assignment in Motivation 101: Open another tab in your browser. Now go to Youtube or Bing (or Google if you favor the Dark Side) and search for “acts of human kindness”, “restoring faith in humanity”, and/or “inspirational videos”. I ask you if the world is so bad, where did this flood of positive imagery come from? It didn’t come from anywhere. It’s there and it’s updated every day. The difference is that you looked for it.
When I started my video project, I had it in mind to feature adaptive athletes and soldiers and how they overcome obstacles that challenge the able-bodied, blend in some acts of human kindness and set them over a soundtrack featuring two of my favorite motivational pieces (the poem Invictus and a speech by motivational speaker Les Brown). Within an hour, I had so much material that I decided to make an entirely separate video on acts of human kindness. Just doing the research made it impossible to NOT be happy and motivated. How could I have too many positive images? The amazing thing is that, when I looked for it, inspiration absolutely overflowed. It’s there all around us, every day. We just have to choose to open our eyes. Remember that the next time you find yourself saying “Life sucks!” or an old favorite of mine, “I hate people!”.
Nothing but good things happened when I started this project, the best of which was being reminded of the story of Kayla Montgomery. I originally heard her story early on in my diagnosis and it was instrumental in shaping what my concept of Robinson vs Parkinson’s has become. When I found this story again the video was mostly done, but there was no way for it to not become the center-piece. I will let the video tell her story, but what it isn’t able to make clear is the fact that, when she’s running, Kayla’s MS makes it impossible to feel her legs. When she stops, she is overwhelmed and helpless, needing to be caught and carried by her coach. My identification with this story is very deep because she has a similar, incurable and progressive disease, and like me, she chooses to do as much as she can with the time that she has.
This video is my effort to show just one facet of the prism of inspiration. Feel free to share it.
People tell me often how my struggle has motivated them. The truth is that they in turn motivate me. One of the most interesting things that I have discovered is that I get the most motivation from those that I inspire. Every time someone tells me that my story has helped them, it gives a new value to my life that wasn’t there before. Whether you believe in an afterlife or not, at the end of our journey through this world, we’re not going to care about the things we have acquired. All of the effort we put into getting that great house or the nice car will seem somewhat trivial compared to the things that really give life meaning. I’m not saying success and the drive to be successful are bad. Enjoy your life as much as you can, while you can, but remember that in the end, we’re going to be thinking about our relationships with other people. Did we make their lives better? How will they remember us? In those memories we can live forever. In that way, PD can be seen as something of a gift. OK, not the greatest gift. Maybe along the lines of a jelly of the month club. Honestly though, it does give me an opportunity to help and inspire people that I wouldn’t otherwise have. That is truly the thing that has kept me motivated through this.
Tecumseh said, “Seek to make your life long and it’s purpose in the service of your people.” With this new life’s work I no longer fear my end on this world. As my eyes close, I know that I will think about this life and it’s expanding circle of inspiration and I will smile. I will think of my friends and the respect that they have shown me. I will think of the total strangers who expressed gratitude and a desire to follow my lead in dealing with their own challenges. Finally, I will think of my children as they pass down my values and hard-learned lessons to my grandchildren. In short, I will know that this life was well spent in the ways that truly matter. Is there honestly, a better gift than that?