On October 7, 2016 (don't we all remember our date?) I heard those four words: “You have Parkinson’s disease.” I wasn't shocked. My father lived with Parkinson’s disease (PD) for 17 years before succumbing to pneumonia. After my appointment I went to work and taught a class on Shakespeare. Kind of poetic.
Those words don’t change who I am, and they don’t define me. I don't hate Parkinson's. It sucks; but I have no choice but to embrace it. I am learning to dance with it. I have young-onset Parkinson’s disease.
I have been a member of Team Fox for almost a decade. I have run marathons, flipped pancakes, and joined several fundraisers. I donate anonymously to a variety of Parkinson's organizations.
But I keep my diagnosis private.
My wife and I slowly told a few family members and our dearest friends in confidence. Together, we decided not to share the news publicly.
I take my pills in private every day. I laugh off the comments about my handwriting. I play the "village idiot" when I am standing in front of my classroom and forget the most basic word. People tell me that I look so serious and that I should smile. I slither away from group photos.
When my non-PD friends post athletic wins on social media, I cheer. But they don’t know that being able to walk from point A to point B is a win for some people with Parkinson’s.
Last week, my boss and I had a lunch meeting with a prospective donor. During the meal I noticed the tremor in the donor's left hand and made a mental note. Back in the office my boss asked, "Did you see his arm? It was shaking. That was odd."
Little did she know, that phrase sucker-punched me in the gut. If I share my diagnosis, I feel certain that I'll be judged, considered “odd.” I worry that others will take pity and I will lose momentum in my career. They may get stuck on a word, assuming I cannot do something rather than seeing all that I can do.
My father was a private man but did not keep his Parkinson's quiet. He couldn’t; treatment was different then, so his symptoms were less manageable. Perhaps watching his disease progress made me more comfortable being silent?
I am fortunate. I am receiving some of the best medical care in the world. And someday, I will be open and public with my diagnosis. I will help educate others so that, eventually, we can replace comments like “That was odd” with an open discussion about Parkinson’s disease and how it doesn’t define the people who are living with it.