Finding my feet again after the flood: my MS journey

Although, in hindsight, I recall symptoms of MS as far back as a decade or so, none were strong enough to give me cause to investigate. My life in Lismore and the Northern Rivers was traveling along nicely. I had a job as a support worker under the NDIS, which I really enjoyed. I spent much of my free time painting large-scale artwork on canvas and had amassed a suitable quantity that I was ready to begin approaching galleries. I also enjoyed spending time with my teenage daughter.

On 28 February 2022, the town of Lismore was hit by the worst flooding in recorded history. My home in South Lismore was completely destroyed and with it, my paintings, camera and video equipment, as well as all of my personal possessions, including my collection of guitars, books and relics from my daughter’s childhood.

An image that remains etched in my mind is of me standing in my living room, which was filled with mud, as a team of strangers dragged my ruined possessions down to the street to be collected.

Immediately following the flood, I returned to Sydney to stay with family members. In the months that followed, I began experiencing difficulty with walking as well as fine motor skills. This got progressively worse, and in July 2022, I was diagnosed with MS.

Throughout the period between March 2022 and approximately September 2023. I have very little recollection, but I have evidence, in the form of photos and written communications. By reviewing email correspondence following my diagnosis I can see the enormous levels of support that I have received from a small handful of organisations such as MS Plus.

Finding the right support to get back on my feet

MS Plus have been on board since the very beginning of my journey and have kept me motivated where I might have otherwise given up. Dealing with the trauma of the flood, followed by MS and the separation from friends and family, has left me feeling extremely isolated. Members of the MS Plus team have become like family, offering support where I would otherwise have had none.

Plus Connect staff provided me with invaluable support from the very beginning. Scanning through email from those early stages, it's evident the team member I worked with was doing battle with not only the NDIS application process, but also my own trauma driven, motivational paralysis. The team’s response to my incomplete tasks was kind and supportive. Eventually, we got my application over the line and I am now on the NDIS.

Employment consultant, Gillian Kennedy, then began supporting me to return to work. We began by looking at the big picture, asking me what I want to do. We’re working on narrowing that down, but I feel like I’m still not in a mental position where I could commit myself to a job. I have a background in illustration, graphic design and photography, and Gillian has thrown a few good jobs in those areas my way, but she’s been good on not putting too much pressure on me.

When it became clear that I was not yet ready to rejoin the workforce, we switched our focus to applying for the Disability Support Pension. This was approved in December 2023. Gillian has been invaluable in keeping my spirits up, calling me regularly to check on my wellbeing.

Among the services approved in my NDIS budget was exercise physiology (EP). I've been attending weekly EP sessions at the MS Plus gym in Lidcombe. The team there is super supportive and the atmosphere is welcoming. They’re a great team and always good for a laugh.

Throughout my life, I've kept up a reasonably high standard of fitness and nutrition so when I began my weekly EP sessions, I was quickly hooked.

Before long, I joined a local gym and have increased my exercise sessions to several per week. I have also refined my diet to the point where I feel better internally than ever before. The transition from sitting and staring at the walls, to actually wanting to do physical exercise has been the quantum leap that I needed. It has been fantastic.

I attend yoga classes each week and I’m undergoing life coaching to stay motivated. I intend to become a life coach in the future as I feel that my experience will benefit others, in similar situations.

Looking to the future

I’m now doing a lot of drawing and painting again and rediscovering techniques I had forgotten all about. With funds from my recent MS Go for Gold Scholarship, I’ve now purchased art materials and other necessities that have made me feel like I’m able to get out of the house more and do more stuff. I’ve got art materials to last me for a very long time now.

I want to get some stuff together to exhibit at some point down the line. I’m also looking at the possibility of running workshops, especially geared towards people in similar situations to me who need help, and provide a space where we can all create art and talk. The scholarship certainly put me on track to achieve that.

While I struggle to remember things from that 18-month period after the flood, I do seem to remember feelings I had. I remember talking to MS Plus staff member, Vanessa, over long periods of time and I remember her persistence, she was always making contact and checking in on me. She single-handedly got me over the line with the NDIS. Most people would have given up on me by then, but Vanessa hung in there and that is just incredible. From there on in everyone who has been on board with my support has been wonderful.

Ultimately, for me MS has been an opportunity to reassess what’s important to me and to rediscover some parts of myself I had forgotten and to refocus on what’s important. That is, living a good life, enjoying each moment, family – all those things you tend to overlook because you’re in pursuit of the career you think you must be doing. In the meantime, we’re missing out on watching our children grow and being there for them when they need us.

It’s incredible how we get our priorities so wrong and MS has taught me that.