A suburban street with marbles sprawled on the asphalt, in the distance a speeding truck is spewing think smoke and flames.

What If Losing Our Marbles Was Not a Bad Thing?

My son was speeding down Turk Boulevard as fast as his 3-year-old legs would go, gaining several yards on me as I pushed the cumbersome stroller along, cradling my sleeping 10-month-old daughter in the Baby Bjorn baby carrier at my breast. He was not yelling to me but instead yelling at confused passersby on this busy April afternoon, and seeing their confusion sent me into hysterics. My daughter woke because I could not simultaneously chase him and laugh without gasping for breath.

Our neighbor Jeanie was amused. From her perch on the stoop, she had a birds-eye perspective of our rowdy descent, anticipating the danger fast approaching as my toddler flew toward the intersection. I lumbered along, warning him to slow down as I tried to catch up, but what I could not see from my vantage point was the truck approaching fast.

"Stop! There's a truck coming!"

Jeanie was a small Asian woman of few words. Her chosen career appeared to be avoiding all human interaction and blasting death metal until midnight, but we'd held a distanced respect that year we shared an apartment wall. She was just the height and structure of my 9-year-old self, but oh Jeanie she had pipes! Thankfully, my son was entranced by the suggestion of any moving vehicle with big wheels and came to a stop in order to scan the crosstown traffic for big trucks, or more than marbles might have been lost. For his next birthday, we hid tiny ceramic animals and a set of vintage marbles in the backyard. By then he'd lost interest in gathering his marbles, and was onto other adventures like spanning monkey bars and jumping off slides.

I've lost my marbles plenty of times and was equally desperate to gather them back... but what if losing our marbles was not such a bad thing? What if we do not survive in spite of, but because of this loss? The old cliché of "losing your marbles" refers to going crazy, nuts, or losing our wits. Parkinson's is not a reasonable disease. It's an unpredictable thief and a cruel marauder taking more than marbles. It employs all the tools of a psychopathic mercenary after occupying our body by brute force, and it doesn't stop until we are dead. At no time can we indulge in the illusion of being free, without bitter disappointment.

Letting go of who you think you should be

I propose and recommend losing your marbles as your primary survival technique. This means letting go of who you think you should be or any hope of perfectionism and productivity. Simply live in the now. It means, as David Byrne sang, to STOP MAKING SENSE. I've tried in vain to express this to my non-Parkie friends, but Parkinson's is most often lost in translation. It's akin to explaining in language what it feels like to give birth for the first time. A HUMAN BEING CAME OUT OF MY BODY!

To be present is to avoid potential falls, misunderstandings and other mishaps that can change a patient's life so drastically. Losing the idea we've "got it all together" has been the most important part of managing this disease for me. Without acceptance, I'm caught in the hamster wheel of striving and straining toward goals within a schedule that has become impossible to keep up with. The shame of not being capable is a form of self-sabotage that can slip into self-flagellation if we don't let go of how we used to be or how we should be.

Everyone will have an opinion about how we should behave with Parkinson's. They'll tell us what they think of our marbles, even when we didn't ask. However disturbing or shocking, Parkinson's has a way of revealing our true character, as well as that of everyone around us.

Brushing off other people's opinions

In weaker, more exhausted moments, I admit to wishing tables could be turned, but only temporarily. If recent exchanges with people I used to know are any indication, it is difficult if not impossible for others to comprehend these increasing struggles we've been forced to become intimate with. The more self-absorbed and small-minded insulated by privilege and health tend to chime in to express their disapproval and disappointment in changes they observe in us. Changes well beyond our control. Changes I've written extensively about... but nobody reads blogs anymore. They'd rather share uninformed opinions and unsolicited advice about our marbles from the comfort of their non-handicapped homes and electronic devices.

In fact, our "marbles" become public domain after our diagnosis. It is a topic of constant discussion among our friends, family, and medical professionals. Our minds are no longer a personal and private matter and everyone is invited to chime in about how we are doing and what stage we may be. At some point, a person with Parkinson's is faced with the decision of whether or not we'll let others into our brains (DBS). We must trust surgeons to cut our head open and put their hands into our brains if we want more life. Unlike medications, medical implants aren't required to be tested in clinical trials, but what choice have we? Living requires the ability to move, and this may be our best chance at some relief, however temporary.

Live in the moment, whatever that is

So when my marbles are scattered, I just let them roll down the hill without stepping into traffic, because keeping them is impossible (gravity, dopamine, and perhaps fate...?). There will always be a big truck about to take us out, and no clear way to maintain what's left of our "living". It is only by accepting what is in every moment and letting go that I might live more fully in the moment, which is exactly how we survive and thrive.

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