For those of us who have had our lives turned upside down the mere words of a doctor, there is no going back. Even though for many of us the fateful diagnosis is merely a confirmation of an instinctual knowledge that something has been wrong for some time, hearing the words has all the finality of a gunshot. “Mrs. Smith, I’m sorry to tell you, but the tumor appears to be malignant.” “Mr. Robinson, I can only conclude that you have what’s called Early-Onset Parkinson’s Disease.” A cold chill, a few short breaths, and then a mind in fight or flight mode….
- System Check: All clear – but what about (Danielle, Drew, Brittney, Ashley, Taylor, Mom,….stop, settle)….How do I tell (Danielle, Drew, Britt….breathe, just get information……)
- Query: How long? What do I do? How much time? Medicine (Side effects?)? Can I work? How long? Why won’t he answer with less than 20 words? Second opinion? How long damn it, how much time? Status check – dreaming? (negative) …..I want to go back, try Restart….Rebooting…
- Welcome to your life, reboot successful
- System Check: Threat detected…Parkinson’s Disease…..processing….. processing…..try system restore
- System Restore – Failed. All prior save points corrupted, contact tech support.
After days or weeks of anticipation and anxiety, even though the words said are no surprise, they sunder the ground around you. By the time you get up and look back there is a canyon between the life you had and the life you can look forward to. There is no bridge, no switchback trail to try and return to those green fields on the other side. You can see them far off in the distance, but you will never set foot on them again…or will you?
If you define your life and your value as a person by the things that you can do rather than the person that you are, then you may very well be lost. When I was first diagnosed two years ago, that was my thought process. Do as much as I can while I am still me. Because if I end up disabled, who will I be?
The answer to that, like most other philosophical questions, is a matter of perspective. That’s actually good news, because you choose the way that you look at things. No one can change that but you. You can choose to value your life by the person you are and the impact you have on other people. That has become my driving motivation to continue training no matter how hard it gets. I continue to chase these powerlifting records not for the obvious benefit of the physical therapy I get from the training, but for the spiritual therapy of inspiring others.
When my new friend Ray Brun told me that hearing my story had helped inspire him to renew his fight against PD, the effect was overwhelming, and truthfully, it will energize my will for the rest of my days. Ray not only motivated himself, but carried my story to the boot camp for Parkinson’s that he attended, becoming an inspiration to others in his own right. That impact will continue to ripple outward and it is something that can never be taken away from us.
Even if the worst happens to me, I will always be the man who fought this disease with every breath. Knowing that I may have inspired others to improve their lives despite this affliction is the greatest value I can give my life. A diagnosis like this tries to tell you that you are less than you were because you might not be able to do the things you could do before. Do not believe it, and if you know and care for someone who struggles to adapt after having their life forever changed by those frustratingly calm doctor’s words, don’t let them forget who they are. Remember us at our best, for even though we may change drastically on the outside, we will always be the sum of the positive effects that we had on other people. Muhammad Ali will always be the heavyweight champion of the world. Michael J. Fox will always be not only Marty McFly but the man who’s organization led the way on PD research. Robin Williams, despite his decision not to carry on, will always be the man who made us laugh as hard as anyone ever has.
I’ve put together a short video to remind us of some of the faces of Parkinson’s at our best. I hope it helps you never lose that image of yourself, no matter what else is taken away from you, that will always be yours. So until that day comes, be the person that you will look back on with pride. Live and love so much that regardless of what you might lose in the future, your self-image and self-worth will never be in doubt again.
As always please feel free to share.