Courage and inspiration: Teacher and singer battles MS diagnosis

The first hint that performer and teacher Holly McNeill's life was about to change came in the form of blurred vision about a week before she was about to embark on a long awaited trip to a Hawaii.

It was summer 2000 when McNeill awoke with blurred vision in the center of one eye after having 20/20 vision her entire life. An eye doctor supposed it might be an infection of the optic nerve but advised her to take the trip and see a neurologist when she returned from her trip.

It seemed that sometimes, blurred vision can be a precursor to multiple sclerosis.

"He said, don't worry about it, have fun," McNeill remembered.

Indeed, in Hawaii her vision returned to normal and McNeill hoped the threat had passed.

Upon returning, she scheduled an MRI with a local neurologist.

The results were troubling.

"The doctor tells me I have abnormalities of the white tissue of the brain," she said.

"But I don't have enough symptoms to say I have MS." "I said, 'If I were your daughter, what would you tell me?' and he said 'go live your life.'"

The life McNeill was living was fulfilling and pleasurable. Before moving to Elgin, McNeill was married, lived in Chicago and worked as a professional singer.

"I was performing in a variety of cabaret settings, singing and enjoying performing," she said.

Early on, she dabbled in substitute teaching as a supplement to her income as a performer and waitress.

Teaching suited her and eventually, while struggling to make a living as a performer in Chicago, McNeill decided to go back to school and received her master of arts in education. Just before graduation, a call came from far-off Elgin.

Elgin Area District U-46 wanted to interview her about a position with the new Visual and Performing Arts Academy at Larkin High School. After learning about the program and viewing the new facility, McNeill was sold.

"It was exactly what I'd hoped for and they wanted somebody who was a professional in theater."

McNeill helped write the curriculum at the Larkin Academy of the Visual and Performing Arts and taught there starting in the fall of 1998, feeling like her life was falling into place.

A pregnancy would complete the picture. She gave birth to Mary Brown McNeill, putting the idea of MS behind her. Eight months later McNeill began to exhibit odd symptoms: numbness on one side of her rib cage, which traveled to her waist and down her leg to the bottom of her foot.

She returned to the Neurologist who suggested another MRI. While she waited for the results a letter arrived from the MS society, soliciting charitable contributions.

Out of curiosity she visited NationalMSSociety.org, listed in the letter where the symptoms of MS were detailed.

"Numbness was the number one symptom and optic neuritis (blurred vision) was another," she discovered. Her Neurologist confirmed the diagnosis, told her to get a second opinion, get educated and gave her videotape on the subject.

"I was devastated," she recalled.

"I was like, this isn't happening to me. My life is so rich.

"So you go through the whole, why me?

"Then after lots of prayer and tears, I realized, why not me? Why should I be immune?

"I've had a really good life so far, better than most people. Why should I slip under the radar?"

Her focus turned to living with MS and finding the best available doctor.

"I'm not fooling around with dabbler," she decided.

"Dabblers, to me, are these Neurologists who claim to know MS but don't specialize."

Her search led her to Dusan Stefoski, a neurologist at the Rush MS Center in Chicago with a three-month waiting list to attest to his popularity.

Refusing to wait, McNeill called daily until she captured the spot of a cancellation. According to Stefoski's reading of her MRI's, McNeill had been living with relapsing, remitting MS for five years.

Five years of doing little to nothing to stem the flow of the disease when medicine was available to slow the progress of a disease.

Stefoski followed with a suggestion that might have seemed counterintuitive.

"You should be grateful," he said. "Grateful that your body was resilient enough to fight this until now.

"You had your baby and you're 40 and you go on this medicine, you could be this good for eight years."

McNeill vowed to do just that, but still dealt with the anger and devastation of the delayed diagnosis.

But then a realization hit her.

"Had that dabbler neurologist correctly diagnosed me, I wouldn't have my daughter because they do not allow you to get pregnant on that medicine."

That epiphany brought the realization of a new purpose.

"I'm a performer, I can talk to people," she said. It became her mission to disseminate MS information and educate those who found themselves in the same place as McNeill did at the awful moment when she was freshly diagnosed and ignorant about MS. She decided to speak at churches, organizations, and community groups to inform and uplift on the subject of MS.

"People, like me think that once you are diagnosed you're automatically in a wheel chair and that doesn't have to necessarily be the way it is," she said.

"They have a lot more options and treatments. It's a very exciting time for people with MS."

"Part of my purpose is to steer people to good neurologists," she said.

"The Rush MS Center in Chicago is one of the best in the world."

"You need to find someone who only does MS," she advised.

"They don't do head trauma, brain tumors and MS because its so hard to stay up to date with everything."

In addition to speaking on the subject McNeill turned to her music to augment her story.

"I've been singing in churches since I was four years old," she said. "My faith is very important to me."

She discovered new meaning in songs of faith and secular songs whose lyrics were transformed by her new perspective.

Christian music, Broadway show tunes and cabaret songs provided messages of faith, gratitude and hope. With the help of friends and associates in the music business, McNeill recorded a CD of those songs closest to her heart that helped her look at her experience with new eyes.

"I knew God wasn't done with me. I knew this wasn't going to be my end. I just didn't realize that I had to write another chapter."

The CD is both lush and simple and appropriately called Hope.

McNeill plans to visit churches and community groups and give benefit concerts to discuss her journey and share the music that led her out of the darkest miles.

But above all, McNeill has a message she'd like to share with all who've lost hope.

"God didn't forget about me even when I felt forgotten," she said.

"With faith, you're not alone."

To contact Holly McNeill for inspirational speaking/singing engagements call 847-528-4678 or e-mail HMCNEILLC@comcast.net