Snapshot: With my sister Lou on an outing last winter
Someone once told me that she considered my sister’s life to have no value. Lou has severe autism and cerebral palsy, so requires constant support from family, friends and paid carers. I stayed with her alone for a fortnight last winter and during that time it was me who cut up her food into bite-size pieces, bathed and dressed her and held her hand to help her safely cross the road.
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 to stay with her, I had been feeling uncharacteristically low. As an over-achiever in my mid-30s, setbacks in my career as a novelist had drained me of my 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 had laid out on her bed. At 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 botanical garden 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 it off and focusing instead on the snowdrops we had gone to see.
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.
Emma Claire Sweeney
Playlist: Revision breaks at my sister’s old desk
Cortez the Killer by Neil Young
“He came dancing across the water / With his galleons and guns …”
May, 2001. A small, dull town in north-west England. I was sitting at my sister’s old desk, in the room she’d left to go to university, using her revision notes to try to swing better GCSEs than I deserved. Every 20 minutes or so, when the history of the Schlieffen Plan began to slip before my eyes, I’d creep along to my own room, stick on Neil Young’s Cortez the Killer and dream of summer.
Young is a controversial figure in our family, despite the picture that hangs in the hall – a gracious concession for Dad’s 50th. My mum and sisters would complain every time his defiant garage ramblings were allowed to replace Broadway soundtracks on the stereo. At first, I agreed: these songs, this delivery – which I’ve heard compared to “a kid trapped down a well”– were a far cry from the unreflective Britpop I was used to. Then I hit my mid-teens and life got serious. I pored over Dad’s records in my room with the kind of attention I should have been giving to my schoolwork.
Cortez – written when Young, pictured, was at high school, and banned in Franco’s Spain for its attack on the king of conquistadors – hooked me heart, body and soul. I was thunderstruck by the idea that anyone would start a song with a three-minute solo – one that bobbed and tugged ominously, like gunships moored on an alien beach.
I dreamed of playing it for my class at some kind of elaborate garden party to celebrate our exam results. Of course, I’d have to learn the guitar first – but there were months in which to do that. Sighing, I let the last few bars play out. Then I crept back to my sister’s room to read up on the first world war.
Peter Beech
We love to eat: Mum’s Old Favvy Pudding
Ingredients
1 level tbspn cornflour
1 level tbspn white sugar
1 level tbspn cocoa
400ml whole milk
1 egg
Mix cornflour, cocoa and sugar to a thin cream with a little of the milk. Add the yolk of the egg, and stir in well. Heat the rest of the milk until almost boiling, and pour it on to the mixture. Return to the pan, and stir briskly while it comes to the boil. Let it boil slowly for one to two minutes. Pour into a warmed dish. Whisk the egg white until firm with a little sugar and spread on top of chocolate mix. Place in the oven (150C) just until the meringue is golden brown – 10-15 minutes or so.
This is very easy, gluten-free and not at all rich. My mother learned it from her family’s cook, Mrs Bye, so it may date back to Victorian times. Born in 1915, and brought up in a Victorian atmosphere with three much older sisters, my mother came late to cooking. She told us the first meal she ever gave our father was grapefruit, followed by boiled egg, finishing with chocolate mousse.
Mum became a typical simple post-war English cook, with a particular skill in making cakes and what we called “second course”. Meals always had puddings, even though she was a busy teacher and looked after numerous pets (12 hens, six bantams, two dogs, two canaries, a budgerigar, two stray cats and a tortoise). We never had people to dinner, but at rare social lunches guests were always offered two puddings – and I still feel that I’m rather falling short for not doing this.
In my 20s and 30s, I was a speech therapist, and my mother was keenly interested in my work. She started a small concern, making wonderful cakes; all significant profits went to Action for Dysphasic Adults – a charity for people who had lost their speech, and become aphasic after a stroke or accident.
As adults, when my sister Susie and I went back to visit our parents, then our mother on her own, this was one of several sweet things she’d make. She always called it “old favvy” – recapturing the years when she could cosset and care for us with her own sweetness.
Christina Shewell
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