Interview: JM Tolani, Parkinson's, and Hope
JM was our very first student at KO Pilates! Born in Myanmar, he was educated in England and the US, and traveled the world taking stunning photographs you can see on his IG @jmtolani and on our studio walls. JM’s resilience in the face of Parkinson’s Disorder is an inspiration to us. We chatted over Zoom before he headed out to hear the Philharmonic.
SARAH: Can you give me a precis of your career?
JM: In high school, I played cricket for the English Schoolboys league, and then I came to the USA and played professional tennis. I didn’t get very far because I had a terrible injury when I got hit in the eye with a ball. I toured the world with Bjorn Borg for two years as his sparring partner, and then I became a photographer. I worked in-house for Giorgio Armani and then I became a freelance photojournalist.
SARAH: Describe your photographic style for me.
JM: It’s documentary style work in black and white. I photograph adults and children in hardship, but I try to capture the positive side of their lives: the smiles, the laughter, the dignity of who they are. I did a lot of work with indigenous people and shamans in the Amazon, from the bottom tip of Colombia to Bolivia.
Bathing, by JM Tolani
SARAH: When were you diagnosed with Parkinson’s?
JM: May 8, 2008. I thought I’d been hit by a Mack truck. I had paid a deposit to go to Mount Everest and had to cancel the trip. I didn’t know much about PD at the time, just these images of Muhammed Ali shaking. The first two years were very difficult, and I was really isolated. There were so many changes going on in my body that I didn’t understand. But I didn’t want to live that life. I said to myself, I’ve got to fight this.
SARAH: How has Pilates helped?
JM: I wasn’t sure Pilates would help me and I was a bit reluctant at first. But I worked with Lesley on the mat, and she was so observant and kind. Then she had her baby and I started with you on the machines. Pilates focuses on the parts of my body that bother me the most. It aligns me and has gotten me a lot stronger.
SARAH: How do you stay so positive?
JM: I think all my years of photographing set me up for this. I travelled all my life by myself, a stranger in new places, and I would see people in incredible poverty who still found the means to make themselves happy. I understood I had to motivate myself and find ways to be happy. I do research every day about our condition, and I send the articles I find out to 50 or 60 people within the PD community to let them know about what’s in the pipeline. This is a progressive disease. Every year it gets worse, whether you like it or not, but you have to control how bad it gets.
SARAH: Do you believe in God?
JM: I do believe in God. My father was a Hindu priest, but I’m not religious. I just say “thank you” every morning and every night. I’m grateful I’m able to do Pilates, dance, do tai chi, go to restaurants and concerts. I’m grateful for my determination and patience. I just say, “Thank you for the day,” no more no less.