When people tell you they see bodies all the time, and yours is no different to anyone else’s, that is a concern. Because your body is your body. It’s the only one you’ve got, and if something is wrong, you want people to believe that, and to help you. To see YOU, not just the surroundings you are encased in, or the issues that present more loudly than you do.
I believe that was the problem when my sister Lynette took Owen to ED. She saw her son, who she had fought to keep alive all these years. They saw a body in failure, not a life well fought. They saw the ashy face, the greying fingertips, the barrel chest, the withered limbs. She saw her baby, who wasn’t meant to live, and who kept coming back when she refused to listen to the doctor’s advice. Just like Dad, he fought, and he fought, and he hung in there, refusing to leave just because someone didn’t think he was worth saving. He was worth it to his family.
I told him, that last week, that it was okay to let go. That if he was worried about his mum, to remember that we were there. We were not him, and we would never be him, and we could never replace him, but his mum wasn’t alone. She would be sad, but we would be there. I also told him, not knowing how much he understood, that Jesus was waiting. That I didn’t know what he would look like, but I knew that he would feel like love. I implored him to choose that love.
Lynette doesn’t remember much of that last week, when her son started to slip away. She doesn’t need to, because I do. I listened to her talk about ‘Dr Doom’ and ‘Dr Gloom’, who looked at her with medically appropriate sympathetic faces, and asked her if she knew what was happening. She said she did – that they wanted to kill her son. She was not giving up without a fight, because he had not given up. But, in the end, his body made that decision for him. She chose to let him go comfortably rather than struggling, but there was no saving him this time. I heard the distressed phone call from his school assistant of many years telling him to fight. She had also lost a son, and the pain of two losses too close together was intense. I saw my sister’s fingers wrapped around Owen’s twisted ones. She said he was holding tight – I think they both were.
And after I left, because I had family obligations, and because it wasn’t my place to be present for his last breaths, the crying face emoji to tell me he was gone. The sense of wrongness that has existed since his birth, that this child was never guaranteed a long time on earth, only increased at his passing. The outrage at people who told my sister to be glad, because he was a burden. The impotent fury at people who never shared in his care telling her to move on, because his going was expected. The confusion that his belongings, metal and plastic and fabric, could still be here, solid and well made, standing up to the march of time, when flesh and spirit was gone.
That spark of life, expected to go out at 6 months of age, not extinguished until he was newly 19. It is a tragedy, people sing, that ‘he was only 19’, and yet they don’t see that same loss in a body designed to fail. “It’s for the best”, they chant. Whose best? Theirs, because it was awkward not knowing what to do or say? The medical system, because he’s not their burden anymore? The taxpayers, because they had better ways to spend their money? My sister’s, because she ‘has her life back’ and can do what she wants? I’ll tell you what she wants – her son. Every backbreaking, exhausting, frustrating, unjust, heartbreaking, love-filled moment of it, for more time with him.
A Glorious Mess 