“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You’re on your own. And you know what you know. And YOU are the one who’ll decide where to go.” Dr. Seuss, Oh the places You’ll Go!
I love this time of year, not just because the weather is beginning to change although living in Texas sometimes it seems like we just have hot, hotter, drenching sweat or can’t move humidity. Nevertheless, we have gorgeous days like today where there is a clear blue sky with a gentle breeze and perfect 66 degrees. Suddenly, your mood is uplifted and all seems right with the world. But, also because this is the time of year when we raise awareness for PD which means not only do I get to spend more time pursing my passion; but I get to travel to meet wonderful people who share my same passion and illness. When I travel as I did just last week, to Lubbock to the Southwestern Parkinson’s Society conference, I am always impressed by my agility and ability to flutter along unencumbered by my usual companions (symptoms of Parkinson’s). At least temporarily until they catch up with me, hard as I try to lose them.
On the way to whatever destination I am bound for, I am always ecstatic by the possibilities especially when I travel with friends or schedule to meet friends along the way. However, inevitably my old friend shows up with its entourage of little dwarfs for the party: jerky, sleepy, clumsy, Reggie rigid, sweaty, and sometimes plain dumb. Once they arrive uninvited without party streamers, confetti or balloons, I am transported back to my cell without as much as a gift or slice of birthday cake. As the scent of freedom and the image of a woman who is Parkinson free lingers in the air like an afterthought, I begin to choke on my lunch. In the commotion of it all my inner Diva pulls out a song which has become sort of an anthem for me,”It’s my party and I’ll cry if I want to, cry if I want to….You would cry too if it happened to you.” Invariably, listening to this sound track play over and over (because of OCD) in my head, puts me in a happy mood realizing the triviality of it all taking into account how lucky I really am to be allowed to be a part of so many great people. At times although, It may feel like we are inside a prison, the truth Is that the cell doors to the jail are WIDE-OPEN, there are no chains and no one is holding us back! we are just as free as ever to do what we want with our lives.
However, we must remember that in order to be productive and effective advocates, mom’s, wives, friends, exercising our freedom with enough energy to bolt out of our prison cells and comfort zones ( to live a fuller life despite chronic illness – ), we must find time to recharge. We all recharge differently. Despite being an extrovert which thrives on having friends and family near by, I need my quiet time and rest. Traveling although exhilarating can be terribly exhausting especially when I have to deal with ill behaved companions who show up at the most inopportune times. Thus, when I return I need down time- usually in form of undisturbed sleep away from uninvited guest who have over stayed their welcome. No matter your method to recharge; it is imperative that you do so. I know that is never easy to carve time away from your responsibilities to step back and pamper yourself. For me it requires depending on others to fill in the gap when resting and rebooting. I would love to be the ‘super’ woman who can master it all with a single bound. However, it is impossible to act independently even when you are 100% healthy much less when you live with a chronic neurodegenerative disease (i.e. PD). If I should try to go at it alone, I am sure to make many mistakes along the way and make my symptoms worse. Thus, sleeping 10 hours when possible is not a bad compromise to allow me to sharpen my skills to be better at what I do- writer, advocate, teacher, mentor, mom, wife, sister, and friend. As I lie down to sleep, I think this is in preparation for continuing to dream, travel, and inspire others to become all they are meant to be despite their PD busting the cell doors of their prison wide open to see beyond themselves to help others in their journey as I strive to do as well.
So, in the end knowing that my life has a purpose and I am free to go out whenever I choose out of my own cell to travel and encourage others in their walk with Parkinson’s – even when I have to frequently face and deal with my pesky companions who are always at the door looking to crash my party. I will still gladly sing “it’s my party and I’ll cry if I want to..” But, instead of tears of defeat, frustration, sadness, or regret I will happily shed tears of joy and gratitude for the people I have met along the way and the places I will go thanks to my PD. You too would cry if it happened to you!
Remember to #uniteforparkinsons
#together4PD on this April Month
all rights reserved – Maria De Leon MD