I cried in church this morning. It was not convenient, because I lead the music group with my guitar and singing, and mine was the only working microphone. But the final hymn was one of Carol’s favourites. I can hear her sing it at the top of her voice, not quite getting the words straight but pitch-perfect and with gusto. And there’s something about music that bypasses the brain, which is working hard to keep composure, and sends you straight to the feelings of the heart. I had to turn away from that microphone because my crying was not quite in tune.
At the end of mass, I looked at my phone and found a message from the friend who shared the deaths of both Carol and Michelle. She goes to Carol’s church.
“Peter is in tears at church. He keeps saying in my thoughts and Jesus Christ!“
This is significant. Peter (that’s not his real name), Carol and myself go back almost 30 years. He arrived in our newly established home in the L’Arche community at the same time as Carol, not because he had lived in an institution like Carol, but because he had lived at home and his mum had died.
Finding yourself in a new place, having lost not only your mum but also your home and everything that was familiar, would be hard for anyone, but especially so for a man with autism who has difficulty making sense of the world at the best of times.
Understanding and articulating his emotions does not come easily to Peter. He likes to stick to the security of well-worn phrases. I have never seen him cry.
It made me realise how huge his loss is. Carol was the one constant in his home, his buddy, his ally. They were really, really fond of each other. It also made me realise that I needed to be with Peter, not just for his sake but also for mine, because of those early years when we started to live together and went through all those turbulent times. Carol adapting to a home which wasn’t a large hospital; Peter adapting to a home that wasn’t home; and me adapting to a home with so many new people in it, and so many new responsibilities.
I spent four years living with Carol, but Peter spent 28 years.
So I invited myself to lunch at my old home. Peter was sitting alone in the living room, clutching the newspaper that is his security blanket, with the television on as always, because television is another security blanket. I went to sit next to him.
“I was crying in church today,” I said. “Because I was thinking of Carol. I heard you were crying in church too.”
Peter leafed through his newspaper and, peering at the pages, muttered the most articulate thing I’ve ever heard anyone say about what grief feels like.
“It’s hurting in my thoughts.”
Whilst I got my hanky out to do a bit more crying, he carried on, “And it’s hurting in my stomach and when I go to the toilet and when I sit down it’s hurting all the time, and I think I need to see the doctor or someone I’m not sure.”
“Peter,” I said, “it’s hurting in my thoughts too. That’s because Carol has died and it’s hurting us. I don’t think you need to see a doctor. I don’t think the doctor can make the hurting better. I think it’s Carol hurting in your stomach.”
Whilst I was talking, Peter got up and moved towards the television. I thought he was trying to shut out my words, but he was doing the opposite. Uncharacteristically for a man who needs that security blanket, he turned the volume down to zero, and then sat down again and heard me out.
“Peter,” I said, “I think we are going to be hurting in our thoughts and our stomachs for a very long time. Because we loved Carol and we miss her. Then I think it will get a bit better. And much later on, we will think of Carol and smile. But now, we think of Carol and we cry.”
Over lunch, I told the rest of the group some of the stories of those very early days, and Peter sat and listened and repeated some of it. And after lunch, I went into Carol’s room.
I’d seen one of the assistants busy with the hoover and some flowers, making her room look beautiful. There were photographs and her many soft toys everywhere, and her favourite hat was hanging at the end of her bed. There was no better place to sit and remember Carol and talk about her. I sat on the bed with the friend who’d sent me that text message, and we talked and talked.
Carol’s bedroom door is being kept wide open, so that everyone can go in and spend as much time there as they like. That includes the assistants, several of whom burst into tears when I asked them how they were because they loved Carol so much; but also Carol’s other housemates, two women with severe learning disabilities who are unable to understand words and do not speak. One of these friends wheeled herself past Carol’s room, hovering, not quite wanting to come in despite me calling her – letting her do this in her own time, and leaving Carol’s room like this for many weeks, is probably the best way to explain to her that Carol is no longer here.
Before I went home, I asked Peter whether he, too, would like to go and see Carol’s room. He jumped up immediately and made his way down the corridor, clutching his newspaper under his arm.
I thought he might just peer in and go straight out, but he went into the room and stood stock still for several minutes. He bent down to peer at the photographs, then straightened up and turned his head this way, then that way.
Then he muttered something under his breath, the same sentence, a couple of times. It took me a while to catch it, but when I did, it blew me away. Once again, this man with severe learning disabilities and autism has been my teacher, articulating my need. Peter, who is hurting in his thoughts, just like me, looked at Carol’s photographs and flowers and said:
“I’m sending my thoughts to Jesus Christ.”
Thank you, ‘Peter’. And thank you to the assistant who made Carol’s room so beautiful.
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