Point Lonsdale musician, artist and disability advocate Bree-Arne Manley was diagnosed with multiple sclerosis 20 years ago. She speaks with Jena Carr about her experience and the launch of her new album ‘Good Grief’.
Bree-Arne Manley was like any other 19-year-old, enjoying her life outside school while travelling and being active.
But her world would soon come crashing down when her vision suddenly started to deteriorate in one eye.
“I had just come back from New Zealand and the world was my oyster. I was excited to start my life on the outside of school,” she said.
“I came home and, all of a sudden, I couldn’t see. I had an aura in my vision, and I thought I was getting a migraine. I had some tablets, but my eyesight never came back, and it never got better.
“So, I went to the doctor, and they said there was not much they could do. They sent me to the optometrist but they couldn’t see anything wrong with my eyes either, so they then sent me to an eye specialist.
“But, they also couldn’t find anything , so I was then sent to a neurologist, and this is when I started getting freaked out as I began wondering if it was a brain tumor or something else.”
While trying to work out what was wrong with her eye, the same thing started to happen in her other eye, causing Bree-Arne to go to the hospital.
This was when Bree-Arne finally got the answer to what was happening to her and was diagnosed with the autoimmune disease multiple sclerosis (MS), which affects the central nervous system.
What she didn’t know was that her sight issues were not her first sign of having MS, as she had experienced a health event while on a school hike a year before her diagnosis.
“I was on this hike and collapsed from what the teachers and I thought was dehydration, so I thought nothing else of it,” she said.
“But looking back on it, I think it was the very first sign of heat intolerance, which is an MS symptom, because I had it happen a couple of other times.”
Twenty years later, the now 39-year-old Point Lonsdale woman is in a wheelchair but still manages to walk, swim, rock climb and even surf with her husband, Lachlan.
Bree-Arne also has two sons, aged 11 and 8, and said she had to work out how to care for her boys with limited mobility.
“I couldn’t carry them. I just popped them on the change mat on the floor and then I pushed the mat and crawled along with it and they would go for a little ride,” she said.
“There’s a lot of stuff that I miss with my disability, but it’s just a puzzle, and you get around it… It’s like rock climbing; you’re just working out how to get from the bottom to the top.
“My husband and I go tandem surfing as I can still swim. I will go out on the beach, and then Lachlan will piggyback me down to the shoreline and lie me down on the board.
“Then he drags me into the water, and I start paddling. Sometimes, he’ll let me go on my own, but he’ll be at the back holding me or making sure I don’t drown.
“He will also sometimes jump on the back of the board, pick me up, and we’ll surf together. He’s (Lachlan) a legend, but he doesn’t like you saying that to him.
“There are not enough hours in the day for my ambitions, and I want to fill as much of my life up with experiences as I can. I will try and do anything and everything.”
Bree-Arne was introduced to music by her parent’s love of singing and records, and discovered at three years old that she could play a song on the piano just by listening to it. She started writing and composing her own songs when she was just 12-years-old.
Following her diagnosis, Bree-Arne threw herself into music where started a reggae band with her husband. She will launch her new folk-music album ‘Good Grief’ on May 24, detailing her journey and process of grief at being diagnosed with MS through soulful lyrics and guitar chords paired with emotional piano strokes.
The launch forms part of a fundraiser at Point Lonsdale Surf Life Saving Club from 5pm to raise money for a beach access wheelchair.
“I’m hoping that other people can be inspired by the album and its songs to not give up and know that they will be alright,” Bree-Arne said.
“I’ve written about going through the stages as I’ve grown up and… I wanted it to be something I could put out there to say that I’ve been through this, but I’ve come out the other side.
“I feel blessed that I can get into the water as I have a husband. But not everyone’s got a Lachlan who can carry them down to the water and keep them safe.
“People stuck in chairs often get left behind by access and inclusion sometimes, and they just have to put up with seeing stuff instead of being immersed in it.
“To actually go onto the beach and into the water to immerse and experience it; it’s such a difference… Being in the water is such a great experience and it’s so much fun.”
Bree-Arne said she encouraged anyone going through what she’s gone through to continue to enjoy life, as it “flies by very fast”.
“(Sometimes) you just have to have a good cry. Let it all out and then pick yourself up, dust yourself off and then see what else you can focus on,” she said.
“The other thing I say to people is if you’re scared to do something, just go and do it anyway because quite often it’s not as scary as you would have thought.
“Then you’ll be so proud of yourself that you’ve done it when it’s finished, and it will go so fast that it will be a distant memory soon enough.
“I’ve tried to live my best life and experience as much as I can, but I still have barely scratched the surface… There’s always something to learn or experience, so just immerse yourself in educating yourself.”
A GoFundMe has also been set up for anyone unable to attend the fundraiser but still wanted to show their support for a beach access wheelchair. Visit gofund.me/03cc86be for more information or to donate.
