WORDS Fatima Measham

It has always been about what Chris can do, not what he can’t.

When I ring Mary Nolan to arrange an interview, she apologises for not being organised. She and her son Christopher went the previous night to see Leonard Cohen perform at the Rod Laver Arena in Melbourne.

This is not unusual for mother and son. Whether it’s heading to the family farm, where Chris’ father, John, holds the fort, or to productions such as Shane Warne The Musical, or to council meetings and conferences, the pair keep themselves busy with the business of life. For Chris, this includes opening the long-running Meredith Music Festival, of which he is a co-founder. As Mary wryly comments, ‘He’s a socio-political animal. He’s never shied away from being the centre of attention.’ 

Chris remains essentially himself. He has defied the initial prognosis in May 1996 that a multiple organ collapse and brain injury would leave him in a vegetative state. He was twenty-eight years old then, working as a lawyer in Hanoi, Vietnam. One day, he simply failed to wake up.

He was airlifted to Singapore, where family and friends had already gathered. As a radiographer, Mary was familiar with what Chris’ physical condition entailed. ‘I knew he had very little chance of surviving’, she admits. ‘My way of coping was to know exactly what the situation was, so I was highly involved with the doctors.’

Knowing that she and her husband would struggle with the decisions they would have to make, she contacted two of Chris’ closest friends to form a decision-making group of four. Over the months that Chris lay in a coma, they faced with a number of harrowing questions, one of which involved suspending an antibiotic. ‘It was a point where his body, his spirit and will, which we had seen in the past, needed to be given a chance’, Mary explains.

It was a difficult balance. They had to do what was medically best for him, while leaving him with the choice to let go. At one point, Mary wondered whether Chris was ‘hanging on’ for her and John because they had earlier lost a daughter in 1988. Over a couple of days, she told him how people loved him whichever way he went. ‘This goes back to our way of operating as a family, for him to be free to go where he is called.’

After three weeks in Singapore, Chris was transferred, still in a coma, to St Vincent’s Public Hospital in Melbourne. On the eve of the six-month mark, beyond which doctors had said he might remain in a permanent vegetative state, Chris ‘woke up’ laughing. His cousin had been making up stories to go with a picture hanging in his hospital room, and apparently went over the top. ‘There was hardly a dry eye at St Vincent’s’, recalls Mary. The last-minute, humour-induced breakthrough was ‘typical Chris Nolan’.
Unfortunately, coming back to the world was only the beginning. There were no special-care facilities for young people with Acquired Brain Injury (ABI). Chris went to a nursing home, Harold McCracken House. According to Mary, finding appropriate care for Chris was like landing in a different world with no road map. There were many obstacles.

They had to shift attitudes towards his condition. ‘He is locked in a profoundly disabled body,’ Mary says. ‘There’s a resistance to imagining what that might be like, to be trapped.’ Brain injury had not even been identified and distinguished from intellectual disability until the 1980s. Moreover, misunderstandings about the person’s needs often arise because ABI is an acquired condition. The fact, too, that Chris is an accomplished individual with a wide range of interests and life experiences tended to be overlooked.

Recent research has shown that the human brain can make new connections. This meant that people could begin to see that Chris needed to be rehabilitated in an ‘enriched environment’.

His family recognised that this was important, not only for Chris, but for other young people with ABI living in nursing homes. Mary points out that in an aged care facility, ‘The culture, if you like, is one of winding down, of making people feel comfortable, whereas with young people with brain injury, the movement is to engage again with life.’

But although Harold McCracken House developed better ways of supporting Chris and other young people living there, they still shared it with frail elderly people. During his first four years there, 13 of the men with whom he shared a room died.

This situation was exacerbated by the fact that Chris fell through the cracks in terms of ongoing funding. He was not entitled to the compensation available to many victims of accidents. Specific funding was hindered by gaps between Commonwealth and State Government responsibility.

Mary and others in similar situations have had to lobby politicians and develop media savvy in order to be heard. In 2001, two organizations, Inability Possability Inc and Young People in Nursing Homes Consortium, were formed. Three years later, with Chris still in a nursing home, family members and friends came together to form a group they called ‘What does Chris want?’ They meet monthly for and with, Chris, and recently launched a book that described how to care for young people with severe ABI.

Asking questions has helped Mary meet many challenges. This does not necessarily mean that she expects specific outcomes. Asking whether Chris would survive his first year after brain injury, she simply hoped. ‘Hope is more of a gift, I think,’ she muses. ‘It’s that sense that all manner of things will be well, whatever that means. It is a letting go.’

Her involvement with Christian Life Communities has also helped sustain her, and she currently guides two younger groups. She was previously involved at the national and international level.

That strong faith has also given her the sense that that this is where she is called to be. In this she is like Chris in his life after his injury.

‘He should have died many times over’, Mary reflects, ‘but he wants to live life as he is. Part of his movement from despair probably came from his sense of purpose and meaning, in making a difference for himself and others.’

Links: 

www.inabilitypossability.org.au

www.ypinh.org.au