Lovesick

Jennilyn Merten is an award-winning documentary filmmaker whose films have been broadcast on OWN, The BBC, HBO, PBS, Sundance Selects, NPR and in numerous foreign markets. She is also the Off-Broadway producer of the Drama Desk nominated "The Eyes of Babylon, and the co-director of "Beehive Spirits", a documentary short which was awarded a regional Emmy. 

Merten was diagnosed in 2008 at age 34. She recently relocated from NY to Sun Valley to partner with Crisman films and begin shooting a new documentary on the upcoming 2016 Munich Memorial.  

Merten can be reached at: www.perpetualprojects.com

This is my first blog about sex and Parkinson’s Disease. It’s been difficult to get past this brief introduction because I am still debating whether blogging about sex is going to result in more sex, better sex, or abruptly less sex. I faced the same quandary while writing my first OKCupid profile, and then a troubling mix of disgust, terror, and mischievousness. It all started rather demurely: “My bowling name is Thelma”, “my mom is hot”, I’m a documentary filmmaker interested in other people’s identity dramas”. But when Jeff Buckley started crooning “Hallelujah” and Mr. Gray discovered 50 shades of dopamine, let’s just be clear, I wasn’t the one tied to the kitchen chair. I was knotting the rope.

Let’s back up. Taking synthetic dopamine and its agonists changes everything. The higher and more erratic the doses, the foggier the beer goggles. Sounds like a perfect moment for a public service announcement on abstinence. But wait, please. One of Parkinson’s strangest negotiations is drug side effects, especially the paradoxical ones that don’t make it into PD conference dialogue. What I mean is this: I’d spent a lifetime of fairly routine but amazingly fierce religious shame—about my body, about sex, and intimacy. Just as it seemed I was making peace with my adult self, I was diagnosed. Now there was an entirely new bodily shame to take to god or my therapist (or the new nano brewery.)

The battle with dopamine and its gifts—mania, insomnia, increased appetite(s), an excellent collection of shoes and indefatiguable creativity— has gotten me in trouble, as it has others no doubt. But it has also helped erase an unhealthy portion of abstract guilt — not the direct kind you probably should feel, but the unnecessary (in my opinion) discomfort with one’s body, with loss, and with those awkward but very necessary attempts at real intimacy with others. It has helped me locate old muscles, old desires, an old but achingly familiar self.

Be assured, I’m not giving dopamine all the credit for my sex life. It takes a ridiculous amount of willpower to be vulnerable, to admit on a first date you have Parkinson’s, to long for connection or just pleasure with your threatened mobility and immortality exposed in plain site. We are, after all, expected to politely ignore both the specter of death and our parents having sex in the next room. 

I have two solutions and one theory.

1. It helps to be incorrigible. That means never apologizing for being “sick” or as a friend once suggested, “you don’t have to wear your campaign button to dinner”. To me this also means laughing when you don’t want to because sometimes the only relief is to appreciate the absurd with absolute confidence (for example: when you must do push ups in the bathroom stall to calm dyskinesia between first date cocktails). Being incorrigible also means exposing yourself when you least want to…because you can’t get that close with clothes on.

2. It helps to be blunt, or at least candid. Some hours, some days I can “pass”. When I can’t, or when I don’t want to hide all the strange and curious concerns of my life from someone new, I start a story. An honest one.  It’s a tale not of loss but wonder, of all the unexpected self-improvements and internal alterations that have no easy accounting. And though I don’t love the disease I would not erase these figures from the ledger. Sometimes it’s much simpler. I type a shaky note on my iPhone and hand it to the bartender: “I have Parkinson’s and I need a shot of whiskey…”.  

A.“Lovesick” is my operating theory: We have a disease resulting in the loss of Dopamine. The body produces elevated levels of Dopamine when we fall in love. Clearly the cure for PD is to do just that. I’ll take a human object of affection but I’m also committed to falling for architecture and Sunday brunch in NY. I’m committed to the slap of sheer beauty the world emits if you keep your eyes open while you’re afraid, to the Footloose soundtrack and to the sense of invincibility and pure gratitude I experience when all the stars align, and the dopamine perfectly mimics the song of my cells….  I stretch my legs, and begin to run. The ground disappears, but my body is solid. I am a god, I am a runaway horse, I am Rocky Balboa on the steps, defiant with elation, ready to feel flesh meet flesh. Who said Parkinson’s Disease is a death sentence…Il n'est qu'une petite mort.