Multiple sclerosis (MS) is a chronic illness involving your central nervous system (CNS). The immune system attacks myelin, which is the protective layer around nerve fibres. This causes inflammation and scar tissue, or lesions and can make it hard for your brain to send signals to the rest of your body. MS is the most common neurological disease that typically presents at an early age, adolescent years.
On MS Awareness day people are encouraged to bring awareness, share their stories and help people to understand how to help those with conditions that are not always visible but can have a significant impact on quality of life.
Jan Coleman, Therapy Pro Melbourne Social Worker, has been very brave in sharing her story.
My journey with MS
by Jan Coleman
My diagnosis of MS in early 1997, came with no great surprise. It did however, come with strong, ever changing emotions, confusion and feelings of uncertainty about my identity, my relationships and my career. My search for hope was intense and deep.
I was searching for hope that I was still loved and wanted by my husband and family, that I was still the same old me!
I was searching for hope that a treatment for MS was in sight.
I was searching for hope that we would somehow be able to work around the stairs in our home, if I were to be wheelchair bound!
I was searching for hope that significant changes to my career path were possible.
I was searching for hope that I would continue to manage life with an inner contentment.
I was searching for another person who had MS, just one would do!
With hope came a freedom to seek opportunities and explore possibilities.
In the early nineties, I had returned to full time employment working as a Primary Teacher, whilst managing a young family of three, with my husband. We were also handling a series of significant MS exacerbations, along with the distress and frustration associated with undiagnosed MS.
With a confirmed MS diagnosis and other health issues, it became increasingly clear that I could not continue to work as a classroom teacher, the job I was trained to do and loved. Full of hope, in a race against time, I set sail! I knew I had to specialise in an area of child development, rather than continue with the physical demands of working as a generalist classroom teacher. At the same time, I needed to work out ways where I could still be productive and feel challenged, yet have the flexibility to feel in control of my work life. That area would turn out to be in language/literacy.
In the late nineties, I trained and took up a part time position teaching children who were experiencing difficulty acquiring literacy skills. At the same time, I completed a M. Ed (Special Education) at Monash University. By 2003, I had stepped outside my comfort zone enough to gain a M. Speech Pathology from La Trobe University. It proved to be a demanding, but an exhilarating experience! In 2004, I embarked on the road less travelled which would not only challenge and excite, but give me an opportunity to take up a scholarship and contribute to important research, a PhD examining the underlying causes of reading difficulties. This work remains incomplete, as I was pulled to extend myself in other ways, ways that were more precisely aligned with my core values.
A new career in Speech Pathology presented in the guise of a spectacular sunrise, as I journeyed. Ever so slowly, it emerged…I was able to use my experience and newly acquired knowledge and skills in different environments. By extending my mental capacities, study seems to allow me in some way to compensate for my physical limitations. I completed a M. Counselling at Swinburne University, then went on to complete a M. Social Work at Melbourne University.
I continue to look for opportunities that allow me to further channel my skills in a direction I enjoy, at a pace I can manage, and with the flexibility I need. And here I am at Therapy Pro. Blessed. I can hear mental health calling me!
Early on, I became involved with MS Victoria as a volunteer, working in policy development and speaking at public forums. Participating in the Peer Support Program for well over a decade has been the most rewarding experience of all. At time of diagnosis, I knew that I had wanted support from those who were in the same boat as I was, so I was ready to give what I knew was the best support. Such a privilege to be a part of a person’s life as a peer support worker, albeit a small part, for as long as it takes.
Living with MS is teaching me to do things sooner rather than later and to regularly reassess what is important in my life. I am learning to feel and give love more readily, to look for any excuse to celebrate and to laugh heaps! I do positive, gratitude and acceptance. I love doing the coffee and cake trail, wining and dining, the B&B experience. I’m a long term collector of junk, well, antiques and collectables, old jewellery and clothes reimagined and repurposed. I feel comfortable to sometimes step out of mainstream and swing to another beat. Sometimes I like to push out the boundaries, just a little bit further and lift the bar a tad higher. My commitment to shape a life that I can happily manage with a determination to achieve against the odds has made me the person I am today-much richer for having MS!
Advances in immunotherapy have been perfectly timed. Medication to slow down the rapidly increasing disease burden in my brain has, so far, spared me the terrible ravages of body, mind and spirit that are so often MS. I like to think I am a positive role model for my children and for others who grapple with life’s many challenges. My beautiful friends, so many from teenage years, always present. Without the love and support of my husband, none of my dreams could ever become a reality.