With a PhD in Psychology, as well as being a qualified Social Worker, I am used to working with people who are disadvantaged economically, socially and physically. I have had a fortunate life and so a diagnosis of MS actually sparked a feeling of responsibility in me; a way to help others less fortunate and to contribute back to the community at large. The Kiss Goodbye to MS campaign presented me with a golden opportunity to do just that.
Although I had mild symptoms from puberty, it wasn’t until they escalated in my early 30s that I recognised it as MS. I kept that knowledge to myself and did not pursue a formal diagnosis until I was 40. I was worried people would start to see me differently. I didn’t want to be treated as if I was unwell, infirm or couldn’t cope. I felt that if my symptoms worsened, and people knew I had MS, I might have my driving licence taken away or have employers wonder about my capacity to do the job.
I decided to ‘come out’ about having MS as a result of becoming interested in sailing. I started on keelboats and joined the crew of a yacht called Beyond Outrageous. We’d been looking for a challenge, so we decided to compete in the 2011 Sydney to Hobart race. We didn’t want it just to be a venture for a bunch of blokes, we also wanted to do something meaningful as well. When I heard about Kiss Goodbye to MS, I knew the race would provide a perfect opportunity for us to help raise awareness though media opportunities, as well as raising money for research. So, in partnership with MS Research Australia, we renamed the yacht Kiss Goodbye to MS, emblazoned the campaign logo all over the hull and sails with some help from Bayer, and hit the media trail. We managed to get photo and interview coverage for the Kiss Goodbye to MS campaign in the Australian, page 3 on the Age, interviews on Channel 9 news and race day coverage and special mentions on Channel 7. We also have pieces run in a number of magazines.
The race itself was as challenging mentally as it was physically. Sleep deprivation over a four day period becomes quite an obstacle. The whole experience certainly tested my MS symptoms, placing me under greater emotional, physical and psychological pressure. It was all worthwhile, especially when arriving at the dock in Hobart, seeing people there to greet us who’d been galvanised by our efforts and were engaged in fundraising themselves.
I’m about to turn 50 and now that I am ‘out’ about having MS I have experienced some wonderful gifts in the form of warmth, goodwill, and love from other people. I have been introduced to some dedicated efforts that other people, far more seriously affected by MS than I am, are carrying out to raise awareness and funds with an inspirational sense of purpose.
My story is only one of many. By its very nature, being neurologically based, it has an endless array of symptoms. That makes every person’s experience of MS different and everyone has their own way of coping. All of this makes it hard for the general community to understand MS as they can’t always see its effects. But what you will find in many of these stories is a common thread of how people refuse to be a victim to their circumstance. It is this that I find inspiring.