From fear to empowerment—“I am not my MS”
When Jenny Hargreaves was diagnosed with multiple sclerosis (MS or wharanga uwhi iaia), her greatest fear was not being able to raise her daughters the way she wanted to.
Now, nearly fifty years later, she’s teaming up with the University’s MS research team to launch CHALLENGE MS—a fundraising campaign focused on fighting MS by supporting life-changing research taking place here at Te Herenga Waka—Victoria University of Wellington. But first, she shares her story, in the hope that she can inspire others.
The road wound through the pass smooth and glittering. On one side, a sheer drop to the Remutaka valley below. On the other, dense native bush. The year was 1981, and Amanda Hargreaves—who was on her way home with her mother Jenny—was about to learn something only two other people had known for years.
Jenny was living with MS, a condition that damages the central nervous system (CNS) and can cause symptoms of weakness, fatigue, pain, vision problems, and paralysis.
The first signs
First appearing in her late twenties, unexplained episodes of MS had been affecting Jenny for years—blurry vision, loss of balance, pins and needles, you name it. But just as she’d begin to question it, her symptoms would start to fade.
“It started with the numbness. It comes and it goes. It did that constantly in the early days. But each time it would take something with it.”
People living with MS can have many symptoms, which can be variable and unpredictable. No two people will experience exactly the same symptoms and these symptoms can be a one-off occurrence, can come and go or change in severity over time.
It took a long time for Jenny to face the likelihood that her symptoms were those she’d seen before. Her mother had been diagnosed with MS in her 50s. As Amanda will tell you, “Mum’s fiercely independent.” But eventually they were occurring frequently enough, she could no longer ignore the need for advice.
Begrudgingly meeting with a neurologist, Jenny was at first in shock when he confirmed that everything she had been feeling was real. There was a reason she felt increasingly less balanced, a reason she was struggling to hold heavy objects, to feel sensations in her hands and feet. He diagnosed her with MS and explained that MS damages the myelin sheath—the protective covering that surrounds nerve fibres, and disrupts the communication between the brain and the rest of the body.
Proceeding to tell her that there was no cure, the neurologist shared that she would likely experience a steady decline in mobility and cognitive function. He warned her that her quality of life would be severely impacted and that there was little hope for a full recovery.
This was not what she wanted to hear.
“The thing that hit me most was the resounding thought, ‘how dare you tell me my future.’”
Living with MS
Following the initial shock of her diagnosis, Jenny literally got back on her horse, quickly deciding this condition would not define her.
“I didn’t tell a living soul, except my husband.”
She was determined to continue doing the things she loved, and to live by the mentality of ‘mind over matter.’
And for a very long time, this was enough.
Until it wasn’t.
“It wasn’t until I lost the sight in my right eye that the neurologist said, ‘you now have to believe that you have MS.’
“It really took a very long time for me to accept. For years, nobody knew. Then all of a sudden I started to limp. I couldn’t control it. I couldn’t stop it. It was then that people began to see that something was going on.”
Jenny decided to first tell Amanda, who to this day recalls thinking her Mum was just a little clumsy.
“I did notice she would drop a lot of crockery. Back then, it wasn’t something you could see.
“At first, I could only see it in relation to myself. My burning question was what about me, am I going to get it? Not really knowing what it was.”
Soon after, Rebecca, Jenny’s youngest daughter, was also told the news.
“I remember asking Mum why she would always take her left leg out of the stirrup on our way home from farm rides.
“She didn’t have the best balance but was extremely brave, I admired her so much. She just loved being out on her horse high up in the hills.”
The next generations
It's been 48 years since Jenny was diagnosed and her daughters have grown and had their own children. Although she has become less mobile, Jenny continues to be able to drive herself wherever she needs to go, she rides a bike, does pilates and tai chi, and walks with the assistance of a walker.
“A healthy diet, regular exercise and a strong sense of faith are what get me through.”
Mia, her 12-year-old granddaughter smiles and shares how they like to go to the movies together.
"It can be a bit of a mission; we have to call ahead and find a place where there’s access to get upstairs. But we find a way to make sure to not miss out.”
Considering what her Nanny may need from her in the future, Mia speaks with a maturity beyond her years.
"I just know I want to support Nanny as much as I possibly can. I love her very much and she means a lot to me.”
Multiple Sclerosis Society of NZ describe MS as a non-hereditary disorder, albeit with an increased risk in close family members that is not well understood. Knowing this, Mia embodies the example set by her grandmother, saying “I like to think—live the best life you can, while you can.”
Coming out and helping others
Today more than 4,100 people are living with MS in Aotearoa New Zealand. We don’t know what exactly causes MS. We do know we need more research to help us understand MS better so we can find ways to treat it and even prevent it.
To this day, Jenny has a very small circle of people who’ve known her struggles and supported her on her journey. Often spoken about amongst her closest family members as her “dirty little secret,” she’s decided this year is going to be different.
Jenny, alongside her family, is sharing her story far and wide. Together, with the University’s world-renowned MS research team, they’re launching CHALLENGE MS—a fundraising campaign focused on fighting MS by supporting life-changing research taking place at Te Herenga Waka—Victoria University of Wellington.
With the goal of raising $20,000, they hope to establish a MS Research Master’s Scholarship in the School of Biological Sciences. This student will work in Professor Anne La Flamme’s lab to improve the lives of people living with MS—people like Jenny, who has battled this disease for more than 40 years.
Global MS Day
Join us in the University Hub at midday on May 30 in recognition of Global MS Day, as the Hargreaves and University MS research team host their biggest fundraising event for CHALLENGE MS.
This will be a great opportunity to show your support for people living with multiple sclerosis and their families.
As well as being incredibly difficult for those diagnosed, we know that MS can have a life-changing impact on whānau, who often provide care and support for their loved ones over many years.
Special guests will include MP Golriz Ghahraman, a passionate advocate for social justice and human rights, who will speak on her own experience of living with MS.
In addition to the MP’s address, Amanda Hargreaves, Manager Manawa Ora Student Wellbeing, has bravely volunteered to shave her head, while Mia will be hosting a bake sale with a range of delicious treats on offer.
You can also donate directly to the CHALLENGE MS campaign, with all funds going directly to the establishment of a MS Research Master’s Scholarship.
Donate to CHALLENGE MS today and help make a difference in the fight against MS.