The Woman with the Orange Tutu
Updated: May 22
This weekend, I completed the BikeMS Ride in Arizona — a fundraising event for multiple sclerosis — and I wanted to share a story from Day 1.
From 2010-2014, I participated in BikeMS 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 at BikeMS in Arizona, 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 BikeMS event, handing water bottles to the riders and bestowing endless high-five’s. 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 and marathoner who continued running and being active in spite of her MS diagnosis.
For various reasons, I took a hiatus from BikeMS in Arizona from 2015-2020. 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. We had about an hour before the start time. He wandered over to the registration table, and I headed for the coffee and breakfast tent. 6am and the DJ was already in full swing! I poured some coffee and sat down to hear the music and morning announcements.
There were some logistical details first — road closures, rest stop info, etc. — and then he had a special announcement. A fan wanted to give us some words of encouragement before the ride. A pause filled the air as we waited for the fan to make her way to the stage. We looked around; no one was moving. Then, on the edge of the crowd, a woman in a wheelchair rolled slowly, awkwardly, 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 and strong 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. It affects everyone differently, but the attacks often occur suddenly or overnight and last for weeks or months or even years. One day, you’re playing with your kids in the park — the next day, you‘re left leg is suddenly paralyzed. One afternoon, you watch a gorgeous sunset— the next afternoon, you‘re blind. For some, the motor skills may come back fully. For others, they may never return. Except in very severe cases or with a diagnosis of PPMS (primary progressive MS), MS does not usually cause death. But for some, the slow loss of function is death itself.
To hear the words, “You’ve got MS” is not easy. The unpredictable nature of this damn 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 the words “You’ve got MS” is 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 it's tempting to cry for the life you once had. This is the easy route.
The woman in the orange tutu who ran and danced along the finish line was my hero, bu that woman is gone. The woman whom I saw in the wheelchair — the woman who smiled and cheered for us in spite of her handicap — that woman is my hero. You see, I realized 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 handle difficulty. 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. They are the ones whose spirits embody a heroic mindset: resilience and optimism for life in the face of adversity. Like the woman in the orange tutu.
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 BikeMS 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 BikeMS Arizona, without fail in her unforgettable orange tutu, smiling and cheering us on…until we find a cure.