Debilitating disease can’t break the chain

The fine chain I wear around my neck carries a Jerusalem cross, and two rings – one is my darling husband Warren's wedding ring, and the other is his ring that was blessed when we renewed our marriage vows for our 25th wedding anniversary.

For many years he wore this fine chain with the Jerusalem cross, but as his health declined due to Parkinson's disease, and his fingers became thinner, I put the rings on the chain. When Warren died on 14 July 2020, the nurse put the fine chain with the Jerusalem cross and rings around my neck. His death came after a long and courageous 14-year battle with Parkinson's. He was just 71 and had been in care for 14 months.

I vividly remember the day the diagnosis was confirmed. We rang our daughter to tell her the news. Then we had dinner with our Catholic parish family group. Telling people took a lot of energy. Most reactions were energising, some were de-energising.

Where the Hell is God? written in 2010 by Richard Leonard sj, an Australian Catholic priest, tells the story of his sister ending up a person with quadriplegia after a car accident. He looks at his reactions – but also the reactions of others. As a response, he wrote seven steps to spiritual sanity. Two of them are: (1) God does not directly send pain, suffering and disease. God does not punish us. (2) God has created a world that is less than perfect, in which suffering, disease and pain are realities: otherwise, it would be heaven.

It is a tough gig to live with a neurological illness – and you can choose to laugh or cry. A common reaction was "it's not fair". It's not fair that a good man like Warren – a man who had journeyed with many as a pastoral associate in hospital, hospice, or parish – could become so ill. Warren and I made a conscious decision not to waste our energy on that sort of thinking. Ecclesiastes 3: 1-8, the Old Testament reading Warren chose for his Requiem Mass, says it much more elegantly.

For everything there is a season,
and a time for every matter under heaven:
a time to be born and a time to die;
a time to plant and a time to pluck up what is planted;
a time to weep and a time to laugh;
a time to mourn and a time to dance.

Parkinson's disease is tough, but individual and different people have different symptoms. Warren didn't have tremors, but an increased quietness of speech. Difficulty in speaking, and later difficulty in reading, were painful for us.

We were both on holidays when we first met – during a conversation about Gough Whitlam and the Virgin Mary, and not necessarily together. Religion and politics then became everyday chat with us. I was Methodist, which became the Uniting Church in 1977, and Warren was Catholic. We were both active in our respective churches when we met and chose to be involved in each other's congregations after we married.

For many years, especially in the last 10 years, we read the Daily Office (Bible reading and prayers) together. Gradually Warren's voice reduced, then he started to misread words. We had to adapt to the circumstances, so I read aloud. We might say the Lord's Prayer together. Later, we would say the Rosary together as that didn't involve reading – and towards the end of his life, I would thread his Rosary beads through his fingers.

We were both fans of Mary McKillop, Australia's first canonised saint, and up to 2 years ago, we were able to regularly catch the train to North Sydney and sit by her tomb. There was great grief that our world, as a couple, was growing smaller. To help overcome this, we would often say, "if we can't do this, let's try that." I remember our last swim together, then our last walk along the beach. 

Covid restrictions made Warren's last months' more challenging - the toughest being that our little family couldn't always be with us; but it was wonderful that they, and others, could join us with technology. We were thankful that towards his final days that restrictions started to lift, enabling some of those closest to Warren the chance to visit and say their goodbye.  

My darling died clutching a prayer cross a friend had given him. He would not let that cross go. He was a man of deep faith, a loving man, a good man. Preparing his funeral helped me as I mourned his death. Ecclesiastes 3: 1-8 says it all.

It's been a few months since I have had Warren by my side. In that time I have tried following my own advice – advice I would have given in my role as a Uniting Church Minister, as a Mental Health Chaplain – I've looked after my health through good diet, exercise and sleep. I talk regularly with friends and have been careful not to make any significant decisions. I also say the Daily Office and have continued with yoga. I am deeply weary – and that makes sense - and will be for some time. 

Now, as I finger his rings and touch the Jerusalem cross, I am reminded of a man who loved and embodied goodness. When I sat next to his casket at his funeral, I had a strong sense that I need not fear. The essence of my man wasn't there, but I knew he was continuing in a place of light and love. 

Rev Christine Sheppard, OAM, was the first woman ordained (1987) in the Hunter Presbytery of the Uniting Church. From 1990-2010 she was the Hunter New England mental health chaplain. She continues to chair the Ecumenical and Interfaith Council of the Catholic Diocese of Maitland-Newcastle, of which Warren was also a member.


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Reverend Christine Sheppard OAM Image
Reverend Christine Sheppard OAM

Christine Sheppard OAM is the Chairperson, Ecumenical and Interfaith Council, Diocese of Maitland-Newcastle.

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