MANCHESTER, NH – Michelle Tolson is a dancer, a teacher and a former reigning Miss New Hampshire who went on to find success as one of the world-famous Radio City Music Hall Rockettes. She’s also a woman with a tenacious spirit, and a perfectionist who has learned to push herself to excel in all things.
And now, she is one of the 2.3 million people in the United States living with Multiple Sclerosis.
Like many of those who battle the debilitating disease, Tolson pulled on her official T-shirt Sunday and walked the Walk for MS, to raise awareness and money for the National Multiple Sclerosis Society.
Team Tolson raised about $5,000 in the New York City leg of the national walk-a-thon.
For Tolson, 41, a 1991 Memorial High graduate who was crowned Miss NH in 1996, this is just the beginning of a very different kind of high-profile platform, one she will use to reinforce the importance of working for a cure while continuing to live life to its fullest.
As is her way, she didn’t immediately spread the word about her diagnosis – especially to her students. In the name of positivity, Tolson wanted to see how the first round of treatment went. She says she only went public with her diagnosis seven months ago.
“It started in January of 2014. I had a blurry eye,” says Tolson, who initially chalked up her new ailment to age – assuming she probably just needed a new glasses prescription.
“It wasn’t a big deal, but it felt weird, so I had it checked out,” she said.
When nothing turned up during an eye exam, Tolson saw a specialist. Glaucoma tests were negative, so she went for an MRI to take a look at her optic nerve, which revealed lesions on her brain, so she saw a neurologist.
“I actually got that news as I was walking into a coworker’s baby shower. It was 5 p.m. on a Friday night, which gives you plenty of time to look up everything on earth it could possibly be over the weekend,” Tolson said.
By Tuesday she was told to seek a second opinion, and another MRI was ordered, this time to include her neck and spine. By St. Patrick’s Day she was told that what she was dealing with was MS – a condition that may have actually been manifesting itself for the past decade.
“It was only then that I considered that the occasional tingling in my arms and legs wasn’t due to a pinched nerve, or that the balance issues I sometimes had weren’t the result of not doing enough ab work,” says Tolson.
She immediately went to battle with the typical demons that go with the territory of a life-altering diagnosis.
“Yes, there was fear, anxiety and trepidation – for 25 years I’ve built my career around my athleticism. I’ve been dancing since age 10, and teaching since 15. So when you hear you may lose your balance permanently, or down the road be in wheelchair, for me, it felt almost like my life was over,” Tolson says. “I seriously thought, ‘What do I have to live for?’ And that was just in the first 30 minutes.”
Under the care of a physician, Tolson tried a medication called tecfidera. She was told to give it six months and then get rechecked to see if it was working. Her follow-up MRI showed new lesions, and everything suddenly became very real.
No longer was it a minor, invisible problem with a simple fix.
“That’s when I decided to go public on Facebook,” says Tolson.
She also immediately wanted to know if MS was hereditary.
“My brother (tap dancer) Aaron Tolson has a beautiful daughter, Charlotte, and one of the first things I asked was whether she needed testing. That’s how I found out that MS isn’t hereditary. It’s just a random disease,” says Tolson, which while comforting on some level, still underscores the sucker punch that goes along with the diagnosis.
In learning all she could about the disease and its treatment, Tolson was heartened to discover that there have been nine medications developed in the last 10 years that have given hope to many – and even slowed or stalled the disease.
She switched to infusion therapy, and now goes once a month to an infusion center at NYU.
“So far the medication seems to be halting the progression of the disease. I had a second round in March, and for now, I’m good,” she says. “For me it means, if this works, I never have to get worse than I am now.”
She’s in no pain. She suffers from some midday fatigue and still has occasional numbness in her arms and legs. Sometimes her feet cramp. Sometimes her eye flares up. She wholeheartedly believes that, while some of it may be attributable to MS, the rest goes with the territory of being an athletic woman at 41.
“I can still speak, I can still hear music — you know, I broke my ankle once and still found a way to tap dance in my cast, so I knew that I was going to be OK. Of course, my mom was scared I’d never walk again,” she says.
Now that the Walk MS is behind her, Tolson is ready to take some more giant steps forward.
“I would like to lobby — I think that’s where I’m heading next. If the research hadn’t been done I wouldn’t be on the medication that is working for me,” Tolson says. “I have friends diagnosed in ‘80s and ‘90s who got worse,” she says.
“It’s important to me to do this, but not selfishly. There may not be a cure for this, but it doesn’t mean people have to be crippled by it,” she says.
So when not busy being a teacher, a mentor, a dancer, Tolson will be a warrior, focused on fighting for more research and leading by example, by continuing to live her life to its fullest.
“Even though everyone was as shocked as I was at the diagnosis, my friends said they weren’t surprised with way I tackled it head on. In some way, the fact that someone like me now has the opportunity to advocate for MS – I have a really great support system in place, and I try not to look at any of it negatively. It’s just another dimension to my personality, and I believe that’s all because of how my parents raised me,” Tolson says. “This is just something else to deal with, and it could be a lot worse.”
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