I do not have Parkinson’s disease (PD), but it is a disease close to my heart and it’s also the reason I was tattooed on a popular television show.
My story starts in my childhood home, run by a single-mom with lots of help from my grandfather, Arnold. He had eight children (including my mom), 14 grandchildren and even a couple of great-grandchildren. Still, he somehow managed to make each one of us feel special and loved. He even found time to volunteer at homeless shelters, Meals-On-Wheels and cook dinner for family parties. We all saw him as the leader of our family. To me, he was a strong, but gentle father-figure. It was easy to forget he was living with Parkinson’s.
He was diagnosed soon after I was born, so I never truly knew him without PD. For most of his life, his symptoms were barely noticeable. In fact, he didn’t start exhibiting tremors, loss of balance and facial masking until a few years before he passed. But I think the reason I didn’t truly understand the severity of Parkinson’s disease until he died from it three years ago, was because he never let it get the best of him.
Some months before he passed, my mom and I visited him at his nursing home. The doctor said he had never seen someone with PD manage their disease so well for so many years. I wasn’t shocked by that — my grandfather, Arnold, was always active and remained positive until, physically, he couldn’t fight anymore.
Before his disease progressed, my mother researched Parkinson’s disease to learn what he could do slow the progression of PD symptoms. The Parkinson’s Foundation helped her better understand what was going on. I only wish that our family had used more of the foundation’s resources — I think it could have helped my grandfather.
I soon decided to honor his memory by getting a tattoo of the words “be not afraid,” since they capture his own strength and courage in the way that he dealt with his PD and cared for his family. They are a reminder that if he could be so strong in the face of a disease like Parkinson’s, then I can be strong throughout my life, too.
I love this tattoo and shared it with my mom. She doesn’t really like tattoos, but she saw how much it meant to me. I think that’s what made her call in to a TV show about tattoos called “Ink Masters: Angels” and sign me up as a participant for their special episode focusing on Parkinson’s. One of the Ink Angels’ dresses would be auctioned off to raise money for the Parkinson’s Foundation and the final competition would host two people to receive a tattoo inspired by their own unique Parkinson’s experience. My mom urged me to be one of them, knowing I like tattoos and it could raise awareness for PD.
Although, I don’t often talk about my grandfather’s battle with Parkinson’s - I let my tattoos express my emotions for me - I agreed that it would be a thrilling way to spread Parkinson’s awareness. So, I accepted to share our PD story on national TV...
Being on “Ink Masters: Angels” was a surreal experience. I was paired with an Ink Angel, a tattoo artist on the show, named Nikki Simpson. At first, I wasn’t sure what tattoo I wanted; I just knew that I wanted it to symbolize what my grandfather meant to me and his fight against Parkinson’s. I explained to Nikki that my grandfather was the most gentle, selfless and strong man who fought his disease in good spirits and my tattoo should reflect that.
Nikki helped me decide on a buck surrounded by flowers, because deer are gentle, stoic animals known for being the leaders of the forest. It perfectly fit the description I gave her. Her addition of the flowers made it even more meaningful, since each year my grandfather loved planting flowers in his yard with the help of me and my sister. It wasn’t easy to tell this story in front of strangers, but it was cathartic. Having my mom accompany me for the taping of the show made it even more special. I know that it was an equally meaningful experience for her as it was for me.
Since the episode aired, I’ve had people come up to me to tell me they saw the episode. Each time someone does, it offers an opportunity for me to talk about Parkinson’s and my family’s story.
To anyone who is looking for inspiration to get a Parkinson’s-related tattoo, remember that it doesn’t have to be something obvious or literal. My tattoo, at first glance, has nothing to do with PD, so people always ask me about it and what it means. It often segways into a dialogue about Parkinson’s and my experience with the disease. My tattoo is my own way to honor my grandfather and spread PD awareness.
Leah participated in a special charity episode of "Ink Masters: Angels" where proceeds from an auction were donated to the Parkinson’s Foundation. Have a creative way to raise funds and awareness? Become a Parkinson’s Champion.