“I don’t know who you really are.”
I let that statement hang there after she said it. We met on an international journalists junket six years ago and became fast friends. She was established, accomplished, opinionated, smart. We sat together, squeezed onto a tiny tour bus that reeked of cherry air freshener. “Are you Jewish?” she asked, giggling at my impression of Hadassah Rubenstein, my uber-Jewish alter ego. “I’m Jew-ISH!” I yelled triumphantly as our bus approached the next stop on our lightning-speed trip through Israel.
She won a genius grant of sorts and spent some time in the woods of New England working on her next book. She’d call me from the one land line and listen to my latest ideas. “I’m quitting. I hate this job,” I’d tell her. “I want to write.” And she would say, “Then write!” And our call would end and she’d go back to writing, and I’d go back to writing, but not the writing I was dreaming of doing.
I whined to her about a series of bad boyfriends, each more unimpressive than the next. After each breakup I begged for her advice, though I never followed it.
I invited her to visit me for a few days. She ended up literally trapped in my apartment, surrounded by moving boxes and suffocated with allergies by my cat, while I went to work. I didn’t give her keys to my condo or the building, so she couldn’t leave or take a walk. Then I’d come back late from work, rant and rave that the house wasn’t clean and then rush into my bedroom to talk to my latest unimpressive boyfriend on the phone. When she left, I sent her a letter – a screed, actually – ranting about her bad behavior, about how much I hated her and wanted her out of my life.
I apologized. Sincerely. About a year after I wrote the letter. And then again. But still. “I don’t know who you really are.”
For the past three years, I have been a terrible version of myself. All of my tendencies toward obsession and compulsion, intense focus or mania, were magnified one thousand percent by an insidious little drug called a dopamine agonist. In my case it was Requip XL. But fellow Parkinson’s sufferers also take another drug called Mirapex, and there are others.
I started Requip because it was supposed to even out the “on and off” that comes from taking Sinemet, the gold standard in Parkinson’s meds. The first six months of stepping up the medication were excruciating. I would take a dose just before bed and then lie in the dark as it crept into my bloodstream. I was sensitive to light and to sound. I was violently nauseated. It took a long time until I could tolerate it, and by then I didn’t recognize what was happening to my personality.
I love to play the piano, and I’ve enjoyed writing music in the past. But Manic Me would sit down every night at 5pm and write hundreds of overwrought songs about heartbreak, composing line after line without moving from the computer until dawn the next day. I spent so much time recording music that my ears had to be treated for cartilage damage from my headphones. I have always loved taking pictures, but suddenly I couldn’t make a move without my camera. I started to buy expensive equipment, began creating and editing film, scoring my own little movies. I worked out incessantly, whittling down to a size zero – I even made a motivational film out of the experience. I felt fantastic. And awful. I never slept, so I could be moody and unpredictable. When I learned I wasn’t included on a team of people recognized for their hard work, after I’d devoted nearly all my time to this particular project, I swore at a senior colleague and told him not to call ever again. “Ask me why I give a shit about anything you do,” I said to him. I bought enough clothes to fill my own boutique. I even shopped in my sleep on my iPhone, woken up by calls from my American Express Platinum card with a fraud alert. “Yes,” I’d say as they ticked off the charges at Nordstrom, Bloomingdale’s, Best Buy… “That was me.”
When I was angry, I was horrid. A boyfriend of two years cheated on me with a young co-worker and I vilified him, telling anyone who would listen about what he’d done (including the flight attendants on my trip to Paris, customs officials, and an ex-girlfriend of his). Then I fell into a relationship with a manipulative addict, taking on the role of mother to his children and personal fixer. Unsurprisingly, that, too ended in disaster.
Through it all, my friends suffered through my late-night rants, let me cry myself to sleep as they soothed me through the phone, played roommate on heavy rotation to help me fight my insomnia.
And then, over an eight-week withdrawal mandated by a new neurologist who recognized what was happening to me, it was over.
When the clouds lifted, I felt a tremendous sense of relief. And shame. I started to reach out to my friends to apologize and thank them for listening. And I said I understood if they didn’t want to ever listen again. But I needed to tell them I understood what I had done. Some of my friendships have not survived this roller coaster undamaged. Some have not survived at all. There are friends and family who say brightly, “That’s what we’re here for!” But I know they are relieved that the next phone call they will get from me will be about a funny movie I saw or a trip I took, and not a tearful plea for support.
“I don’t know who you really are,” still sticks in my head. She has been the only one who knew me only since the Parkinson’s diagnosis. I’ve brought the full weight of it to her door too many times to count. I’m still a few years shy of a decade with this disease, and still figuring things out. Having Parkinson’s is sort of like having a second shadow, with edges that bleed so slightly beyond my real shape that only I notice sometimes. But it’s always there. I doubt she and I will ever be as close as we were before. I will forever be haunted by who I became, or rather, who I had the capacity to become. And she has only known me as my worst self.
These days I’m living a quieter life. I’m more subdued. I’ve stopped crying wolf. And the change comes just as much from age and wisdom as it does from being free of the Requip. My speech has slowed down to a normal pace. I sleep at night. At work, I have a new job I love in a new location. I walk my dog. I visit my friends. I’m in a happy, healthy relationship. I feel normal.
This is who I really am.
[A special note for readers suffering from Parkinson's disease and struggling to adjust to medication - please don't think you have to wrestle with it on your own. I know how difficult it is to get an appointment with your movement disorders specialist. An excellent resource is the National Parkinson Foundation. The website is comprehensive, and they have an outstanding helpline you can reach at 1-800-473-4636.]