Refusal of the Call

Larry Gifford

Soon after my diagnosis in August 2017 and for many months thereafter, I convinced myself they’d gotten my diagnosis wrong. “Maybe I don’t really have it,” I’d said to myself and occasionally my wife; only to be reminded of its defiant clutch over me.

“You are going to need to figure out what kind of relationship you’re going to have with it.” I remember my wife saying. That pissed me off. Fuck. Relationship? I could taste the bitter hate. I recoiled. How do I develop a relationship with an untrustworthy, controlling, and overbearing disease that is planning to systematically shutdown my body and trap my brain? I sneered at no one in particular.

“Parkinson’s is not welcome.” I’d argue. “We are officially frenemies .” Indignantly, I’d declare this disease has no right to my life. It’s MY damn life. Get the fuck outta here.

Parkinson’s persisted. I resisted. Rebecca tried to reason with me. Ha ha! You can’t reason with me. I’m unreasonable. The disease with its many side effects and symptoms winked at me.

I made it my personal mission to look for answers at the bottom of every wine and whiskey bottle I could get my hands on. “Nope, no answers there. Lemme try this one over here.” I was looking for a Golden ticket. 

“You know,” the wise wife would say. “The more you resist Parkinson’s. The more power you give it.” I thought about that silently for a bit. She was right.

“I disagree,” I said. I disagreed a lot back then. I was an Olympic-level, logic-linguist gymnast. Whew, boy. “If exercise is the key, then I should avoid exercise altogether. You see, I don’t exercise. Never have. Now, because of Parkinson’s, I’m just going to start exercising? That’s giving my power over to the disease.”

Rebecca remained unconvinced. “Honey, what happens when we resist, resist, resist?” I was quiet. “The tower falls -- over and over, harder and harder until the Universe gets your attention. ” She was right again, of course.

Stuck in the backseat of a cab, having put my wallet in my front right pocket – a mistake for sure – I laid down in the back seat humiliated, I wormed my wallet out of the pocket. I couldn’t control my right hand or arm to get near it. It was as if it was protected by a force field.

I was nervous, frightened and a bit panicked. What would my friends and colleagues say when I told them I have Parkinson’s? I really didn’t want to admit I was flawed, but I couldn’t exercise around it either. I was taking more and more meds and had more and more intense symptoms. “Larry,” I’d say to myself. “You do not have to solve the disease. You need to solve your relationship with the disease.” They were Bec’s words, rattling around inside my brain. 

In my quest to discover that relationship, I started to seek out a Parkinson’s podcast from a patient’s viewpoint. There were none. In my research, I listened to Dr. Ray Dorsey, University of Rochester, on the Michael J. Fox podcast. He said, “If people with Parkinson’s do not start sharing their stories, we’ll never get enough attention, to raise enough money for research to do something about it.

Storytelling. Ding. Ding. Ding. I can do that.

I took the mic once again. "When Life Gives You Parkinson's" became my battle cry, a podcast born out of the resistance-turned-resilience. It wasn't just about me anymore; it was about us, the Parkinson's community.