BERGENFIELD, N.J. — It would be fairly easy for Bergenfield native Jamie Tripp Utitus to break down in defeat. After all, it's what her multiple sclerosis wants her body to do.
Instead of dwelling on all that the lesions on her spine have taken from her over the course of the past 8 years, including her ability to walk, Utitus chooses to focus on what she still can do.
And that's type.
The mom of two has been using her fingers to make a living for her family, and in doing so has realized that she can use her ability to effect change for herself and others like her.
"There was a reason I got this horrible disease and I believe it's made me a better person," said Utitus, a Passaic special education teacher-turned award-winning writer.
"The empathy I have for all humans, my desire to serve, and my desire to fix the healthcare system has grown exponentially since my diagnosis
"And for that reason, I'd never give my disease back."
Utitus says her battle with MS has not been with the disease itself, rather, with the healthcare system.
"The U.S. healthcare system is seen as a wall we must surmount to get where we dream of being, rather than acting as a ramp that helps us arrive there," Utitus said.
"There's a problem when we are supporting each other on GoFundMe pages to help a woman procure a lift that would help her get her partner into the shower on his own."
For years, Utitus avoided filing for disability. Her husband, Tony, had a salary and was also dealing with fading eyesight and seizures.
Their insurance company seemed to be doing more harm than good.
Utitus recalls one instance in particular, when she discovered that her insurance company had suddenly stopped covering her $8,000 monthly infusion, which enables her to walk.
"Their answer was that I should be cured by now," Utitus said.
"MS is a degenerative disease. It doesn't get better."
After much deliberation, Utitus filed for disability. She was denied.
"It was almost like the disability system told me I was demoted for trying anything I could to stay off disability," she said.
"Disability teaches you if you fight, you will only get next to nothing and that's if you win."
In an effort to buoy the finances, Utitus attempted to return to teaching. The stress of the job, however, only caused her illness to progress.
Utitus knew she had to do something. But what could she do? Her disease had taken so much from her.
"If you focus on what you can do, instead of what you can't, only then will you live the happiest life possible," she said. "And that's synonymous with healthy."
Meanwhile, Utitus' blog was gaining traction. She started it just after her diagnosis in 2009 and the birth of her second child.
What resulted was her award-winning blog about life with MS, "Ugly Like Me," which reaches 97 different MS communities across the world.
Utitus also wrote a children's book based on her own story, illustrated by Hawthorne's Johnny Keane.
"We cannot fight unless we have a platform. Because I am a writer, I do."
Her work proved that the pen is indeed mightier than the sword after the late Gov. Frank Lautenberg and Senator Corey Booker began fighting for Utitus because of her writing they'd come across.
Within days, Utitus' healthcare provider noticed a minor oversight and paid $40,000 overnight.
The problem, Utitus said, is not everyone has the advantage she does. That's why Utitus has become determined to use her voice for the better.
"I'm reaching people who feel alone and can't move," Utitus said. "If you can take this ugly, ugly thing and turn it into something beautiful, then that's art.
"That's a life well-lived."
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