The Woman With the Orange Tutu
This past fall, I completed the Bike MS ride in Arizona — a fundraising event for multiple sclerosis — and I wanted to share a story with you.
From 2010-2014, I participated in Bike MS: Arizona. I was diagnosed with MS in 2006, and to participate in an event that generated such unbelievable support and awareness filled me with joy and hope. Every year after each day of racing, a vibrant woman full of smiles and cheers greeted us at the finish line.
She wore an orange tutu (her famous orange tutu, I soon came to learn) and danced every time someone crossed the finish line. Her agility and strength were on full display as she ran and leaped for hours on both days of the event, handing water bottles to the riders and bestowing endless high-fives. She was always there, without fail, year after year in her orange tutu. As I learned her story, she became one of my personal heroes: an avid runner, a marathoner, who continued running and being active in spite of her MS diagnosis.
I took a hiatus from Bike MS from 2015-2020, and 2021 was my first year back. I was so excited. Day 1 was a gorgeous morning, and my boyfriend and I arrived at the event just as the sun was rising over the McDowell Mountains. I poured some coffee and sat down to hear the music and morning announcements.
The announcer had a special announcement — someone wanted to give us some words of encouragement before the ride. A woman in a wheelchair came slowly towards the stage. She was having a difficult time maneuvering her wheelchair in the dirt, but she was all smiles and waved to us as we cheered for her. She tried to stand, but her legs were too weak. That was when I noticed her orange tutu.
My heart sank and tears came to my eyes as I pictured the woman with the orange tutu from previous years running across the finish line. I was so affected by her arrival in a wheelchair that I missed the beginning of her speech, but I caught her final words: “My MS and my wheelchair do not define me,” she said to us. “We all have something. It’s how we choose to live with that something that makes us who we are.”
When she finished, I slowly walked back to the car. Wiping the tears from my eyes, I couldn’t stop thinking about how agile she was just 7 years ago.
MS is like that. It‘s an unpredictable progression that slowly robs you of your precious motor skills and senses, such a sight or feeling. One day, you’re playing with your kids in the park — the next day, your left leg is suddenly numb. One afternoon, you watch a gorgeous sunset— the next afternoon, you‘re battling optic neuritis. It affects everyone differently. For some, the motor skills may come back fully. For others, they may never return.
To hear the words, “you’ve got MS” is not easy. The unpredictable nature of this heartbreaking disease is ruthless and unforgiving. My mother, who has had MS for over 40 years, suffered an attack once while we were on a family vacation. It can take away the ability to live a normal life; it can take away time spent with loved ones; it can take away the person you once were.
And while those words are not easy to hear, giving up on life is an easy and tempting route to take. It’s tempting to stay in bed all day. It’s tempting to wallow in anger (and in all honesty, completely justified). It’s tempting to cry for the life you once had. This is the easy route.
Even though the woman in the orange tutu could no longer run and jump at the finish line, I came to realize something that day: heroism is not a physical act, but a mindset. It’s not what you are able to do, but the way you perceive the world. The heroic ones among us are the ones who get knocked down and get back up — maybe not literally or physically, but mentally and spiritually. Like the woman in the orange tutu. She embodies the heroic mindset: resilience and optimism for life in the face of adversity.
When she found herself in a wheelchair a few years ago, she could have relinquished her iconic role as the cheerleader at the finish line — that would have been understandable. She could have stayed in bed the morning of the ride. But she didn’t. She was there when I rolled across the finish line at the end of my ride on day 1, cheering and smiling at the finish, just as before. And she was there on day 2, handing out water bottles from her wheelchair. And you know what? She’ll be there next year, too. And the year after that, and the year after that. She’ll be at every Bike MS: Arizona, without fail in her unforgettable orange tutu, smiling and cheering us on… until we find a cure.
Editor’s Note: This article was originally published on coachbirdwell.com and is edited for length and clarity. Find a Bike MS event near you to join the movement.