I was diagnosed with a rare form of Multiple Sclerosis (MS) 25 years ago. It ended my previously successful life as a professional artist, musician, and textile designer with my own business. At that stage there was virtually no help for people with MS in Queensland country areas other than hospitals or nursing homes. A few people with MS gathered together and formed an MS Support Group of which I was a committee member. The group grew at a great rate, showing the need for support for these people. Over the years, I have seen some hundreds of people with all forms of MS from this entire area.
Multiple Sclerosis has as many variations as individuals, unless it is the severe progressive type. This type escalates rapidly, and we see so many younger people condemned to a drastically reduced way of living, often in a nursing home full of elderly people.
Many of our younger progressive people die at an early age in appalling circumstances. Around 70% of people with MS endure extreme pain, be it skeletal or neurological, and yet their brain retains all their personality traits right to the end, even if their bodies are totally paralysed. It's a living death.
I am a trained counsellor, MS contact person and MS Disability Advocate for south-west Queensland, as well as member of other Australia-wide organisations for people with disabilities. One of the questions often discussed with seriously ill people is how a person with terribly progressive MS can end their suffering and pain at the time of their own choosing. Some people with MS have had to resort to the most awful ways to end their lives, without any dignity for themselves or for their families.
Thus I endorse all the good work being done to bring some closure to this mess by making sure good and proper laws are made in Australia to give our seriously ill and disabled people the right to end their suffering as they choose.
- Judith Emmerson James, December 2016
Nominated for Australian of the Year 2012; Queensland MS Advocate of the Year, 2013.
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