TRU alum and sessional instructor living with MS has a new perspective on life after years of denial
You probably know someone who has been affected by Multiple Sclerosis (MS).
You might not even know you do, but with approximately 100,000 Canadians currently living with the disease, and the toll it takes on their family and friends, you almost certainly know someone who has seen what it does to people, even if you’ve never seen the disease itself.
It’s the most common neurological disease affecting young adults in Canada, according to the MS Society of Canada, and three more people are diagnosed in Canada every day, on average, with women three times as likely to develop the disorder as men. MS causes fatigue, vision impairment, impaired speech, loss of balance, spasms, tremors and even paralysis.
And no one knows what causes it.
It’s not contagious, and it’s not inherited, but other than that, science hasn’t been able to find a reason for its sudden appearance in people.
Some people, for some reason, just suddenly find the protective covering of their brain and spinal cord attacked by their own autoimmune system and becoming inflamed, causing the nerves in these all-important areas of the body have their impulses distorted or interrupted.
Some will fall asleep one night, with no idea they have anything abnormal going on inside them, and when they wake up, they won’t be able to use one of their hands, because it’s gone numb.
Or maybe it’s their legs.
Or they suddenly have blurry vision.
Some will just suddenly start slurring their words.
That’s what happened to Cathy Obertowich, 2009 graduate of TRU nursing, and now sessional instructor in the same program.
“Just over three years ago, one morning I suddenly woke up and was a little more uncoordinated, and then I was on the phone with a friend and all of a sudden I started slurring my words,” she said.
That day continued, and she noticed a loss of balance and dizziness, and the word slurring continued. “I just kind of wrote it off and pretended like it wasn’t happening,” she said.
At that time she had just recently graduated from nursing school, was starting a new job, was embarrassed and a little bit scared. Together with her close friend, who was also in healthcare, they started going through all the possibilities of what might be causing her symptoms.
Her friend took her to the hospital. “I thought I was having little strokes or something,” she said, “and they said, ‘no, you’re having seizures.’”
The MRI that came back showed lesions, and the neurologist said that the patterning of the lesions themselves meant MS.
“And I told her ‘no it’s not,’” she said, “because that was my greatest fear. Even in nursing school I absolutely would not look at degenerative neurological disorders.”
She just wanted to live her life. She didn’t want to be officially diagnosed with the disease she’d already been told she had, because as a nurse she knew what that disease meant.
“So I went with ‘It’s seizures,’ because seizures are treatable.” There are cures available for seizures. There isn’t for MS.
MS is forever.
Obertowich just couldn’t let herself believe that she had it. She was in denial and went away to live her life, waiting for the next attack of the disease.
And she went three years without a symptom.
But she was on vacation in Las Vegas with her daughter in September of 2013, and she woke up one morning with blurry vision.
It was optic neuritis.
Optic neuritis, according to Obertowich, is, “the golden key standard for MS,” and because it was her second attack, she was officially and formally diagnosed.
She was given the medication options to carefully consider her choices, and together with her family, she settled on Copaxone.
Copaxone is an injection which contains a similar molecular structure to the protein that is being attacked by the immune system with MS, so it draws the “attention” of the system itself and makes it attack a harmless injection rather than attacking the nervous system, which hopefully prolongs the time between attacks or symptoms. It’s also one of the least expensive treatments (at about $1700 per month, according to Obertowich) and has few side effects.
“The beauty of where MS is today with research is that we actually have disease modifying medication,” Obertowich said, “They didn’t have that 10 or 15 years ago. People used to be diagnosed with Relapsing Remitting but it would progress quite quickly,” because the medications weren’t around to slow it down.
It’s those people, the ones that developed it before there was medication to treat it, that Obertowich deals with as a nurse, and it’s why she was so scared when they first suggested it to her as a reason for her symptoms.
And as a TRU sessional instructor in the nursing program she now confronts her disease on a much more in-your-face level than most.
She works in areas with her students where they are working with individuals who are living with very advanced-stage MS. Having now been diagnosed with the disease herself, and seeing where the disease can go, she realizes it’s just a matter of time before she gets there, as well.
“Eventually it’s going to progress,” she said, but added that, “I could be 90 years old before it really progresses to the point where it affects my activities of daily living,” and it could do so with few attacks, spread far apart, with long stretches of symptom-free time.
Or, as she said, it could progress to the next stage of the disease to Secondary Progressive MS, where you don’t get better after it gets worse, as you do with Relapsing Remitting MS.
But working with her students alongside these advanced-stage MS patients, having the disease herself, also gives her another sense of purpose in her role as an instructor.
“I have an opportunity to work with these students to hopefully watch them grow into being the type of nurse or care aid that I would want if I were in that bed.”
Now that she’s come to terms and accepted the reality of her own life with MS, Obertowich says she has a new perspective on life, and in a strange way, it’s made it more fulfilling.
“When I feel good I feel good, and I seize those moments, as opposed to some chronic conditions or Secondary Progressive [MS], where you’re constantly symptomatic. I get breaks and I’m thankful for that.
“It puts things in perspective and makes me be more realistic,” she said. “I’m not going to let it hold me back; if anything it’s going to push me forward,” she said, by allowing her to seize the moments that she’s pain and symptom free and celebrate her life a little more than some of us do.
What she wants people to understand, she said, is that “people can still live with a chronic health condition, they can still be their all. It’s your journey, so ride it,” she said.
“This is my journey.”
“At first it scared the hell out of me. Now I’m okay.”