I grew up in a small beach town in the North Island of New Zealand. Sea, sand, surf and clouds have always been my calming influence and still are today. The youngest of 3 girls, I was always the clumsy sister. Falling over grass, walking into doors, tripping over thin air, unable to catch a ball, unable to colour in without going outside the lines and a mum that used to say “Susan, lift your feet off the ground and walk properly”. So, in hindsight I believe MS has always been a part of my life.
I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in 1996 aged 36. My journey began about a year earlier when I started dropping and breaking plates while doing the dishes. One day, I got all the way to my car before I realised that my keys had dropped out of my hand. I woke one morning to a leg that would not lift, just wanted to drag. I never connected the leg with my clumsy hands but thought I better get it checked out. Then came the diagnosis of relapsing-remitting MS.
At the time of diagnosis, I had three young children, 11, 9 and 6 and worked full time as a Watchhouse officer for NZ Police and was loving life. I was fit, running 5kms a day, cycling up to 50kms a week and training with a friend to compete in triathlons. I continued to run and cycle regularly until I was diagnosed with Secondary Progressive MS (SPMS) in 2016.
From 2013 until I took medical retirement in late 2023, I worked as a Prison Officer in a male prison. My progression was fast-moving, which meant I had to seek alternative employment within the prison system, where I was not having one-on-one contact with inmates. Management made this almost impossible for me, to the point of transitioning into early retirement.
Unfortunately, this was not a pleasant experience. To fight the bureaucracy within the Government system was a tough road and one that made me even more determined to help others having the same or similar problems that arise when faced with a disability.
I am proactive in advocating for others who face similar challenges as I did and am deeply passionate about helping my peers, old and new. a listening ear, and help to people struggling with their own feelings, a new diagnosis, rejection, help navigating various Government Networks including funding agencies, Centrelink, the health system and employment. If I cannot help, I will point people in the right direction, whilst maintaining kindness, transparency, and respect.
I joined the MS Society in 2013 and began a new chapter in my life. Since joining, I have built a strong bond with an amazing team of people from nurses and doctors, allied health professionals and now to care support and respite staff.
I joined the Advocacy and LEEP programmes to give meaning to my disease and help others. I involve myself in as many research opportunities as I can, have been involved in codesign projects and advisory groups within MSWA and Inclusion Australia. I try to attend as many external events as possible related to MSWA, and I run a local Peer Support Group in Perth.
MS is not easy; it requires determination, guts, and loads of support (and a heap of tears). I am now wheelchair bound but can still transfer myself and attend Physiotherapy sessions twice weekly including cycling 5kms on an exercise bike and weekly Hydrotherapy sessions. Being aware of what triggers symptoms like fatigue helps to support a healthy balance between one activity to the next.
MS does not define who I am. I am still a wife, mum, sister, aunty, nana, and friend. I may do things differently, but I am proud that I have the resilience to still do the things that I love.
