While Lou relies on others night and day, she looks at the world from such a distinctive vantage point that it is difficult to prise apart her enchanting abilities from her apparent disabilities.
The care cuts both ways. During my stay with Lou, while I was helping her to bathe and dress and eat, she was looking after me in ways that were subtle but just as significant.
Before travelling up to stay with her, I had been feeling uncharacteristically low. As an over-achiever in my mid-thirties, setbacks in my career as a novelist had drained me of joie de vivre.
By welcoming me into her daily routine, Lou reminded me that pleasure can be found in all sorts of places: her face would light up when she selected an outfit from the clothes I’d laid out on her bed; in the cinema, she sang along to ‘Tomorrow’ with Annie, clapping her hands above her head; one evening, she dragged me around the marine lake at sunset, forcing me to run against the wind and laughing all the way.
We took this selfie at a botanic gardens during our fortnight together. Moments earlier, I had been burning with irritation at the staff member who had tried to refuse us a carer’s ticket. But Lou brought a smile to my face by shrugging off the injustice, and focusing instead on the snowdrops we had gone there to see.
Later that night we went to a gig and Lou shook hands with all and sundry, repeating her favourite phrases: ‘What’s your name? You’re a ratbag! I like college.’ In this way, we got chatting to a young man, who – full of despair – had just dropped out of university. Lou reached across me to take hold of the young man, and they sat hand in hand for a long time.
I like to think that she was helping him that night, just as she was helping me: that her zest for life was rubbing off on him; that he would value – as I did – her reminder that there can be dignity and kindness in seeking and accepting care.
Owl Song at Dawn by Emma Claire Sweeney, inspired by her sister, Lou, is published by Legend Press, £8.99