JEFFERSON CO., Pa. (EYT) – It takes a special person to find the silver lining in being diagnosed with a neurological disease, but one Punxsy woman has done exactly that.
Taylar Peace was born and raised in Punxsutawney. She graduated from Punxsutawney Area School District in 2012.
Her life began to change in 2016 when she had a bout of optic neuritis, an inflammation that damages the optic nerve and can cause vision loss, which left her without vision in her left eye. Her vision issues led her doctors to a further diagnosis: multiple sclerosis.
Multiple sclerosis, which affects 2.5 million people worldwide, including 400,000 in the United States alone, is a potentially disabling disease of the central nervous system. It occurs when an individual’s immune system attacks the myelin, which is the fatty substance that surrounds and insulates the nerve fibers, as well as the nerve fibers themselves.
Luckily, after three days of intravenous steroids, Taylar got her vision back, but her MS diagnosis was still a huge shock.
“I didn’t know a whole lot about it. I remember sitting in the hospital bed, with a million thoughts running through my head telling myself not to cry,” Taylar told exploreJeffersonPA.com.
“Though all I could picture was myself in a wheelchair unable to move. Because that’s what I thought always happened to those diagnosed.”
Taylar’s daughter was just one year old at the time, and visions of herself possibly unable to care for her daughter haunting her.
“Looking up all possibilities on the internet was by far the worst thing I ever did,” she noted. “Worst case scenarios were all I was looking up. I never looked at the positives of what this would or could bring to my life.”
According to Taylar, her MS has actually brought plenty of positive things to her life.
“It’s taught me to appreciate every single moment of every day because I don’t know when I’ll start to have a bad day. My whole entire outlook on life has changed, really. Because before I would have a minor inconvenience and think it was awful; now, I always have the mindset of, well, it could always be worse, and I should be grateful that it isn’t.”
“I’ve been able to have the opportunity to meet and talk to all sorts of new people since that day and learn so much from them, not only about the disease itself but how to always find the silver lining in everything. The next hour is never guaranteed to be good, so look forward to the next minute and give it your all.”
While she’s become adept at focusing on the positive, the negatives of dealing with multiple sclerosis are also a constant in her life.
Taylar said that the chronic pain is by far the worst, but she also deals with tingles and numbness from the base of her head to her toes on an everyday basis, as well as muscle spasms that can last for days.
Taylar also deals with what she refers to as “shakes” where her arms go numb and tremble.
“Picture a person with Parkinson’s and how their arms are always shaking: that’s what happens when it starts and can last anywhere from a couple of hours to a few days.”
She has also experienced what is commonly referred to as “MS hug,” also known as banding or girdling, which is a feeling of pressure around the chest. She noted that when she first experienced the sensation, she believed she may be having a heart attack.
“I’m affected every day by my pain, but I’m managing it. I have to leave work at least once a week, if not every two weeks because of my arms going numb or cramping up to the point I’m unable to move them,” she said.
“I have good days where I sometimes almost forget I have it, honestly, but it returns tenfold to remind me it always there.”
She had her second daughter in June of 2018 and had to take a leave of absence from her job after her maternity leave was over due to a relapse that left her completely unable to even pick her daughter up for nearly a month and a half.
Luckily, she said her managers and boss have been like a family to her and have been very understanding of her health issues.
“I got very lucky to be employed somewhere with such caring people.”
One thing Taylar would like people to understand is how quickly MS symptoms can crop up and affect people.
“I would like people to know that we aren’t faking it just because one minute we’re fine, and the next we’re not. Anything can happen within a minute. Be compassionate and understanding when someone with MS tells you that they can’t attend an event or can’t get out of bed that day – because they aren’t trying to be rude. They’d love to be there, but either can’t function or can’t stand to have a sensory overload.”
Exhaustion is another common symptom that many people with MS deal with on a regular basis, and Taylar is no exception.
“If we say we’re tired, don’t say me, too. Exhaustion to the point of not being able to lift your head isn’t the same as not sleeping well…and, it can hit like a freight train at any moment.”
While there are many symptoms that are common among most people with are living with MS, the disease also has a tendency to lead to many different experiences for different people, as well.
“No two patients with MS are the same. We all can have similar symptoms, but all experience them differently.”
“So, your grandma’s MS is never the same as mine. And, because all of us are different, it is harder to understand. This is where others need to be compassionate have an open mind when we try to explain what is really going on with us.”
(This is the second article of a series of articles in honor of Multiple Sclerosis Awareness Month.)
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