As I sit here wearing my new Grinch pajama bottoms, courtesy of my husband who thinks I look especially cute wearing them, sipping a nice cup of hot cocoa trying to think what to write as my last post of the year my mind drifts to the all the ups and downs we have all shared in our journey with Parkinson’s disease.
As the Grinch would say, the year “stink, stank, stunk…” at times.
The year commenced on a sad note having lost my dad to a rare skin cancer at the end of 2014. Then went on to lose several great friends and acquaintances along the way many to cancer and many others to PD. But just as I lost, I also gained several new friends as the year progressed.
Together we have cried and laughed felt hope dwindle but never fully extinguish. Yet, sitting here thinking on the days gone by I am reminded of my favorite place once more -the beach -particularly when it is summer like weather outside.
Over the summer, my dear friend and I had a chance to take the girls and get away to a nice beach area in New Jersey. Even though we were not there for very long, stepping into that white sand and seeing that blue water, I was immediately transported to a different time and felt like a new person even my Parkinson’s seemed to melt away at least for a few hours.
Imagine as I go down to the beach, I typically travel with my hands full intending to make the most of the day not wanting to waste a single precious moment. So, I walked down carrying an umbrella, a chair, my bag full of essentials like sunblock, towels, and water periodically performing a balancing act to keep my hat from flying away while keep from sinking in deep in the hot sand and falling.
Although, I am Latina I don’t tan well and my pasty pale skin was a sight to behold especially for those who had already been at the beach for days and weeks. Nevertheless, I kept on and thought to myself who cares if they want to stare –let them!
Finally, we reached our destination and we parked ourselves there commencing a synchronized ritual ….planting the umbrella, extending the towels, unfolding the chairs, setting coolers, putting on tanning lotion on the girls as they were are already eager and half way darting into the water not hearing a word I said.
I take a deep breath and lean back in my chair and begin to look about at the glorious scenery. I see a couple who appear to be arguing over what I am not exactly sure? On the other side there are some teenagers chasing one another while a woman watches them intently over a book she pretends to be reading. The cover looks cool; but I cant quite make out the name of the book…Yet, another woman (perfectly fit and tanned) sitting alone gazing far off into the sea is suddenly jolted back by a lover who leans in from I am not sure where and plants her a kiss.
At that moment, I was thinking it would be nice if my husband were here loving on me as well as I did an eye roll to one but myself chuckling realizing that no matter what I would never look like her.
However, this entire exercise served to remind me of how REFLECTIONS don’t tell us the entire story. Perhaps, others watching me would envy my solitude? ( since my friend had left me alone and gone for a stroll).
As the year unfolded, I realize all of us have faced a multitude of challenges many of which have gone unnoticed by most while some only have gotten rare glimpses of our daily lives. We ourselves have only stared at fragments of others lives who also happen to share our same affliction. Only when we have come together as women & PD Initiative, are part of organizations like PDF, PAN, MAPC, APDA, NPF, and other PD support groups do we begin to break through some of those barriers and see the real unfolding life struggles, heroism, sorrows, and daily challenges.
Despite, the fact that there are nearly 10 million people worldwide who have Parkinson’s disease in common, all have unique qualities and experiences with life & PD. Thus, I should never presume to set my own standards for living well with PD on anyone. I rather strive to be a mentor, counselor, and a guide based on my own experience as a PD specialist and person living with PD.
As we are but a few days away from a new year, I am overjoyed for a new chapter to be written in the fight against PD, one full of hope and courage where lives are made better and disease is combated and even reversed with new treatments ahead. More important we are made stronger and wiser because we have lived through though times with PD.
WE must remember, as the new year draws near, each one of us is a one of a kind design and thus the PD Journey should also be unique and personal-we MUST own our disease in order to move forward! NOT alone; rather one where the PD community strives to hold one another -up, encourage one another, lift- up one another, is a mentor to one another, as well as a good listener, and a friend. I suggest that next year instead of seeing someone else’s reflections from a far, we follow our hearts and get involved in someone’s life. Pave the way for someone else’s success with your pearls of wisdom…Do something meaningful and worthwhile for someone else and something good for you whether it be sleeping well, eating right, exercising-walking, yoga, bicycling, singing, dancing, praying, sculpting, boxing, painting…the choices are as varied and as endless as the stars.
Many Blessings from me to you and thank you for all of your continued support and loyalty throughout the year! God Bless everyone!!