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You did not read the title wrong. I just wanted to assure you of this. In my twenties I became symptomatic of what would be diagnosed as Parkinson’s Disease. They say you should start off writing strong, lure them into your story. If the aforementioned didn’t grab your attention, perhaps a more mathematical approach will. Because the only thing more compelling than words are numbers, no?
Beating the Odds
Parkinson’s Disease affects roughly 1 million people in the United States. Of this cursed million, it is estimated about 6,000 are diagnosed before the age of 40. Using basic math, which is the only kind I am capable, and the calculator on my iPhone, it means about .00002% of our population are Parkinson’s patients under the age of forty, much less in their twenties. If you’re someone who needs your math to be more Vegas odds in nature, it means you have approximately a 1 in 54,667 chance of being diagnosed with Parkinson’s at my age. For perspective, according to Google, your chances of being struck by lightning in your lifetime are about 1 in 3,000. A geneticist friend of mine told me I was a researcher’s wet dream to be so young and healthy and have such a rare diagnosis. After informing him I wasn’t interested in such a title he said, ‘fine. You’re an unicorn of genetics’. As the narwhal is one of my favorite creatures I countered to be the unicorn of the sea to which he agreed because at this point, the whole conversation had unraveled beyond any hope of repair. So you may call me the narwhal of neurological diseases.
It is probably pertinent for me to mention why I have a buddy in medical research so readily available. It’s because I am in the medical field. Being a nurse has afforded me amazing opportunities ranging from working abroad with Doctors Without Borders to having a meth head try to stab me with my own pen in the Emergency Department. Not all of the experiences have been so enjoyable. And none have been less enjoyable than having a front row seat to my future with an incurable disease. I imagine it would be akin to having fellow death row inmates be responsible for the executions. It would be emotionally and psychologically tortuous to see your impending doom which is probably why we as a culture have decided against such a tactic. Critical care medicine operates outside of societal standards of decency. I learned that the first time a patient threw a full urinal at me.
The symptoms were subtle initially. I was living and working in the Himalayas of India at the time, a phrase I know makes me instantly unrelatable, and found my strength diminishing each day. I was training for a half marathon which morphed into a 10k and then a 5k and before I realized it, I could barely muster up the energy to walk to the trail much less run on it. Watching the race seemed out of my grasp after a few months.
The tricky part about having a disease which is tremendously rare for your age demographic is it’s not something physicians will look for naturally. And it is rare. According to an article in HuffPost, your odds of being a victim of a serial killer is .00039% and still the safer bet than my having Parkinson’s at now 33. And some days, it’s the more desirable of the options as well.
So while I was killing time waiting to either be struck by lightning or end up on ‘Criminal Minds’, the industrious teams at Vanderbilt ran me through just about every test legal in the United States. I was passsd around from speciality to speciality as they looked for cancer, MS, ALS, Wilson’s disease, Lymes disease, thyroid this, diabetes that...nothing. Four years and five figures of medical debt later, they took a swing at a curve ball and knocked it out of the park. And the news could not have been less welcomed.
Winning the Battle, Losing the War
Quick: what was your first memory in life? I think about mine probably twice a week: my sweet grandfather, laying on the floor, crying, scared and EMS around him. He had fallen out of his wheelchair and couldn’t get back up. Because he had Parkinson’s. I’ve been terrified of this since I was three years old. Do you know what it’s like to be asked to face your greatest fear every single day? I do.
It looks a lot like waking up in the morning and for the first time that day, making the decision to not let the disease win. It’s a decision I’ll have to make another forty or fifty times the rest of the day. Some days I’ll go to bed proud of how well I persevered and other days I will crawl into bed with barely the strength to cry myself to sleep in despair.
The first hour of the day I spend perfecting my impression of the Tin Man sans oil while I wait for medicine to kick in. Sometimes this requires a cane to get from room to room. And when I’m too proud to use the cane, sometimes it looks like falling on the floor. Things I used to enjoy and were actually good at are sources of frustration and humiliation now. Like painting. Playing the piano. Writing. When your hand decides to go rogue, you lower your standards because the victory of doing it to spite the disease is a greater reward than it being as good as it used to be.
Isolation is the symptom which is often neglected. People are uncomfortable with someone having a difficult burden in their lives. They ghost. It hurts. It’s tiny breeches of trust and grieving of friendships as you see text messages dwindle. We always say we’d rather have quality over quantity but we never talk about how much the pruning process hurts to get to the precious few.
Any pride I had is long gone. Sitting in a waiting room at the Parkinson’s clinic and being the youngest person by thirty years or so will strip you of arrogance real quick. Other things which will ensure you never feel cocky or even competent again: falling over in yoga, eating soup in public with tremors and dating. Nothing will make you wish you had been in the .00039% of serial killer victims more than trying to be on the dating scene with a neurological disorder. Ladies, if you want to see what a fella’s true grit is, try bringing that to the table. After a guy told me no one would ever want me and I should have been grateful he ever paid me any attention since I’m such a burden, I went home and googled the process of becoming a nun. I am not qualified on so many levels. So instead I just prayed for a fitting justice: may all his microwave food heat unevenly leaving pockets of frozen solid and boiling hot lava forever. Amen.
It is so hard. And I know I should have a neat little resolution here so the audience can have closure. But we don’t have a resolution for Parkinson’s yet. And we may not in my lifetime. It is not ok because it is a disease which destroys lives and leaves broken families and broken bodies in its wake. This monster has a 100% kill rate so to speak, no one has ‘beat Parkinson’s’. But daily is the option for a present verb: beating Parkinson’s. Whenever I go to work and take care of patients in a way which allows them to feel loved and have dignity, I am beating Parkinson’s. This continued war, which I will inevitably lose, credits small victories to me as long as I show up to the battles, no matter how poorly or how clumsily I fight: I still fight.