John-Paul’s story

“Our first date never ended,” says John-Paul Gilius of the first time he met his soulmate, John Murphy. And that beautiful first date would still be going, if the cruel hand of pancreatic cancer hadn’t taken John away far too soon, barely four years later. But while cancer could destroy John’s body it couldn’t destroy the person he was, and the last weeks of his life were spent in celebration, surrounded by friends and family who adored him, until the day came when John died in the arms of the man he loved.

When John was first diagnosed he said to me, “We haven’t been together that long. If you want to leave I understand.” And I looked at him and thought, we are crazy in love. There was no decision to be made in my mind. It didn’t matter what I had to give up. Nothing was too much trouble. I would look after him, care for him, love him and give him the life that he needed and deserved.

John was the first person who made me feel complete, who made me feel total comfort. We had both been married and we came from rural areas so we had that in common but it was much more than that. Being with John made me feel, for the first time in my life, absolute happiness. I even came out to my family because he made me want to shout our love from the rooftops.

So when he started to get sicker, all I wanted was for his last days to be as happy and joyful as I could make them. I wanted him with me, not in some nursing home. I wanted to allow him to live and eventually die with dignity.

The best day we had was two weeks before John passed, when we threw what some people might call a living wake but we called a celebration day. John’s wish was to marry me which of course we couldn’t do but we had a civil union. We held a a Celtic wrist-binding ceremony where my mother and his children tied us together as a symbol of our love. It was beautiful.

There wasn’t a soul in the place – me included – who didn’t cry when John got up from his wheelchair and asked me to dance to our wedding song, Unconditionally by The George Twins. I will never forget it. Of course then half way through he said “Um, does this song go on much longer!” which was so funny. People look back at the photos and say ‘Oh he looked so sick’ but he didn’t to me. He was so damned handsome and so happy to be with the people he loved.

Before the party John was worried no one would come – because he thought who wants to come to see someone who’s dying? Who wants that sort of sadness? Terminal illness can be so lonely – people reach out on Facebook but then they make excuses because they don’t know what to say. Well he was wrong. So many people came. John kept saying that he couldn’t believe all the people who were there. That’s something I want everyone to understand if they know someone with cancer. When someone is terminally ill, don’t let them die alone. Visit them. Talk to them. Make the effort. Don’t stop giving them that human touch and love because that is what they crave.

We weren’t ready for John’s life to end. He wasn’t ready to go. But on that last day I think he knew. We had family visiting at the time but everyone had gone out for the day and it was like he was waiting for it to be just the two of us. He asked me to help him go upstairs and I held him, taking one small step after another. I thought there’s no hurry, we don’t need to rush. But he had this strange look on his face that I couldn’t read.

He said he just needed to rest.

I got him upstairs to the bathroom and he looked at me and he died. I knew right away because of his eyes – it was like his soul was gone and he was just a vessel. He died in my arms, he died just with me which is what he wanted. He died in privacy with the man he loved. There was nothing else I could do. I did the best I could for him but it hurt so much. It still hurts.

People say we were so lucky to find each other and it’s true. Not everyone gets to have what we had, even if our love couldn’t be legally recognised. I will love and miss him forever. He’s my soulmate, the one person who gave me true happiness.

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