Jason Anderson

Has friends living in nursing homes.

“Nursing homes are a big assembly line, there is no dignity in that. I don’t really like being told what to do. Where I am now, at this place, it is my home… more than this would be a place where my kids and their friends could crash anytime.”

Jason did not take up footy, unlike most of the young boys in his street. He chose swimming, spending many disciplined hours getting to and from and in the local swimming pool. Jason swam competitively throughout primary and high school, “When I wasn’t swimming, I ran, I cycled, I was a sports junkie. I couldn’t get enough of the feel good stuff.”

When he was sixteen Jason got the flu and was sent by ambulance to the Fairfield Infectious Disease Hospital. No one could say for sure but Jason believes this was the beginning of his multiple sclerosis. In the meantime Jason left school, married his childhood sweetheart Rita, bought a house and fathered a daughter Jesse and soon after a son Bayley.

At 24, when his daughter was four months old Jason was attempting to get his motorcycle licence when he noticed that his balance wasn’t good. A visit to his GP and then a neurologist led to a formal diagnosis of multiple sclerosis.

“There were lots of stresses from the very beginning, it was a real struggle – we had a split level house which we needed to modify – put in a lift, ramps outside, a wider door on my workshop.  Our bedroom was downstairs and I moved upstairs – there were no services, we had to get philanthropic funds to assist with building modifications. The council sent a worker who was too old to lift me. Rita had to do everything. Almost overnight she had become my carer, (you can’t cross that line) and the breadwinner, she hurt herself lifting me – we got our money’s worth out of the ambulance service who we called for help whenever I had a fall.

“We managed for 13 years without any help from anyone.  We were just trying to be normal. We did not get a pension. I was the house parent. Jesse and Bayley knew no different. I would take them to school on the scooter in the morning – pick them up in the afternoon and look after them until Rita got home from work. Our paths were altered and it happened really quickly – things like modifications took ages to get so you always needed to plan ahead – its like being a rain calibrator – you don’t know if its going to rain and if it does you don’t know how much it will rain – there is much uncertainty.”

After 12 years Jason says that the marriage succumbed to the pressure and the couple separated. “I tried so hard to be a good husband. I tried to stay out of this chair, but this disease was too strong. I felt beaten, I felt worthless, I felt helpless.”

At 39, some 4 years later, now living in picturesque Williamstown and the proud father of a 14 year old daughter and an 11 year old son, Jason reflects on his past. There is a sense that then, as now, his persistence, optimism, courage and desire to do normal things has him well and truly back on track. He has studied, completing the Leadership Plus Program, is the face of the MS Society and an advocate for young people in nursing homes as a consumer representative on the DHS My Future My Choice Advisory Committee.

“I want to make my children decent people in the world and I want to leave them a world that is decent. I can do this by being independent, getting up when I want to get up, and having control. Nursing homes are a big assembly line, there is no dignity in that. I don’t really like being told what to do. Where I am now, at this place, it is my home… more than this would be a place where my kids and their friends could crash anytime.”