Carers – a journey through love, strength and struggle

Carers – a journey through love, strength and struggle ‘Love never ends’ – Story by Jenny Baird

The story told in these pages ranges from the humble beginnings of a few people struggling to deal with a debilitating illness on Groote Eylandt, through to the founding of an internationally recognised organisation leading the way in research and provision of care for people living with MJD.

It all began when Mandaka Lalara was diagnosed with a mystery illness then known only as ‘Groote Eylandt Syndrome’. As more family members became afflicted, knowledge was gained regarding proper provision of care. (For instance, through the experiences with Kevin and Ernie, we learnt the importance of good nutrition to counter bowel obstruction.) It also became increasingly clear that social interaction is really important, giving people living with MJD an opportunity to feel they are still valued members of the community. In the early days of the disease, families kept MJD to themselves, and had to deal with care issues on their own, since the wider community was having trouble grappling with this strange and unknown illness. Gradually, over many years, the community began to understand what MJD was, and then, via the MJD Foundation, there came funding and research.

When my husband Warren was diagnosed with MJD there was no Foundation to support us with anything; we were just going on instinct. As a carer, I had no support at all. I remember a visiting health professional advising me to help Warren in his exercises, and to do his chest percussion for him, on top of having to do everything else in my life, such as continue to working. The health professional did not visit us again for another six months. I just felt so overwhelmed! I couldn’t believe her lack of understanding of what a carer goes through. No one asked me how I was coping, or what they could do to help. Carers face an immense burden: loneliness, coping with the impacts on the family’s children, dealing with bureaucrats who believe they know your situation better than you do!

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