Meet Jess

At 25, Jess Miles learned she had multiple sclerosis (MS) and felt as though her future had fallen to pieces. More than a decade later, she has rebuilt that picture in her own way. Now, she’s preparing for a bucket-list trip to Alaska, proving that while MS may change the path, it doesn’t have to stop the journey.

“I did a 7-day cruise in 2013, just before my MS diagnosis, and I always wanted to go further into Alaska,” Jess says.

“I just wasn’t sure how to make it work with my health and accessibility needs.”

Jess uses a wheelchair and drives a modified car. Alongside her assistance dog, Campbell, Jess relies on a close team of family, friends and health professionals.

Making things work differently has become a familiar part of life since Jess learned she had multiple sclerosis. Determination has always been a part of her personality, and she refused to let MS define her future.

Long before her diagnosis, Jess had been living with unexplained symptoms, including double vision, pins and needles, numbness and pain.

Then one morning, she noticed she had lost feeling in her arm. By the following day, the numbness extended from her scalp down the right side of her body.

An MRI revealed lesions on her brain.

“I was on my own at the hospital when I got the news and I really only remember the words, ‘you have MS’ before I started bawling my eyes out and then I didn’t even know what they were saying. I just heard that there’s something wrong with my brain. The walls went black around me.”

For Jess, the diagnosis was frightening, but it also provided an explanation for years of unexplained symptoms.

“It validated all those strange symptoms and gave them a name.”

“Finally, I realised it wasn’t all in my head as previously suggested over the years. It wasn’t just a matter of how I was feeling or perceiving symptoms. It was literally damage in my brain and spine.”

“I stared down at those pieces on the floor wondering how I could possibly put them back together.”

“For that picture to crash down around me at 25 was devastating. I stared down at those pieces on the floor wondering how I could possibly put them back together and make them fit into something I wanted for my future.”

Jess continued building a successful career. Eventually, she achieved her goal of becoming a Global Health and Safety Systems Analyst for an international mining company. It was a role she had worked towards for years.

But as her MS progressed, severe pain and mobility challenges eventually forced her to step away from work and focus on her health.

During the early years after her diagnosis, Jess felt as though she was living in a fog.

A turning point came when a close friend offered to attend an MS Queensland workshop for newly diagnosed people with her.

“Getting in contact with MS Queensland really was the first step in me putting back together the shattered jigsaw pieces of my life.”

“Tears ran down my face during that workshop. It was the first time I was really confronted with what this meant for me, but it also gave me hope and knowledge of who to contact for help and support,” Jess says.

Since then, MS Queensland has continued to support Jess throughout her journey.

She has received support coordinating her NDIS plan and accessing a modified vehicle, helping her maintain some of the independence that remains so important to her.

Jess and her family have also given back, fundraising for MS Queensland and regularly participating in the MS Moonlight Walk.

“MS Queensland has walked my MS journey with me.”

Today, Jess describes her life as putting the same picture back together in a different way.

“My life will never look like it did; but that’s okay. I’m not the person I was at 25 upon diagnosis; MS has granted me a lot of privileges and forced me to plan differently and live differently. MS has shaped the person I am today.”

She has learned to focus less on the things she cannot control and more on the moments that make life worthwhile.

“Life’s not all sunshine and roses but sometimes it has rainbows, and those are what I focus on.”

For Jess, the next rainbow is that long-awaited adventure through Canada and Alaska. Careful planning and the support of her village have made the trip possible.

“It may not look exactly like the picture framed on my wall at 25-years of age, but that’s okay,” Jess says.

“MS doesn’t stop me; I just adjust things to accommodate my situation.”

“In finding ways to make it work, things may look different, but the end result is the rewarding part.”