My extraordinary bond with the sister I’ve never spoken to
LIKE so many sisters who shared bedrooms growing up, Clare and I had a lot of fun. We loved to put Kylie or Bananarama on the cassette player and I enjoyed plaiting her hair and trying my new lip gloss and eyeshadows out on her. But my favourite thing was our nightly routine.
When our parents had said goodnight, I’d climb down from my top bunk into her bottom one and snuggle in close.
I’d relish the comfort of her warm skin next to mine and the feeling of her heart beating as I whispered to her about whatever was on my mind — a girl at school who’d been mean to me, a boy I had a crush on, or the happenings in the Aussie soap Neighbours. Clare would listen intently, hold my gaze and smile.
What she never did was reply. Clare, 18 months my junior, has a condition called Rett syndrome. Caused by a faulty gene, and affecting mostly girls, it means she is profoundly disabled and unable to speak. I’ve never had a conversation with my only sibling.
For a short time, when Clare was about a year old, she said a few words, but then this cruel disorder ripped through her brain and stole them from her.
I don’t remember how Clare’s first and only words sounded, although I’ve often imagined them. I reckon she’d have a throaty chuckle and a wicked sense of humour. Her eyes, the portal through which we ‘speak,’ suggest as much.
I believe telepathy exists. I think when you really know someone, when you truly love them, it’s possible to know how they’re feeling, and how they might respond, without them speaking to you.
So, when we used to lie in bed together as children, I felt like I could hear her replies. They were warm, funny and occasionally a bit cutting, exactly as you’d expect a cheeky little sister to be.
Rett syndrome isn’t hereditary and, currently, there are no diagnostic tests during pregnancy that can identify it. It affects about one in 10,000 girls.
Babies with Rett usually appear normal at birth and only begin to show signs of disability when they lose skills they’ve gained at about one year old. Then a whole raft of symptoms reveal themselves, among them repetitive handwringing, abnormal breathing patterns, epilepsy and bending of the spine (scoliosis).
When Clare was tiny, our mum, Yvonne, a university lecturer, instinctively knew something wasn’t right, but doctors sent her away time and time again, telling her to stop fussing, that children all develop at different rates and Clare was just slower than most.
It wasn’t until she was five that a consultant at Great Ormond Street Hospital identified what was wrong, and she became one of the first people in the country to be diagnosed with the syndrome.
Growing up in rural Worcestershire, life revolved around Clare’s complex needs.
My parents were on a merry-goround of doctor’s appointments, meetings, referrals and endless letter writing in order to get the treatment Clare so desperately needed. Carers called twice a day. Some weren’t a great fit, but others became lifelong friends. Clare and I were even bridesmaids for one of them, a wonderful woman called Carol.
There were times, however, when I felt like an only child, albeit without the attention. I would sometimes resent the fact leaving the
house was a military operation. Holidays were also hard. I still recall the trip to Filey, North Yorkshire, when I was ten and Clare was nine. Mum and Dad had to lift Clare in her wheelchair up the steps to our holiday rental and they both put their backs out. I remember them lying on the floor in agony as I looked longingly out of the window at the beach.
Aged 20, after finishing at her brilliant special school, Clare went into a full-time residential care facility, where she has been ever since, spending weekends with my parents. Anybody with a disabled child or relative will know that provision falls off a cliff once a disabled person leaves school.
In frustration at the lack of help, Mum founded the charity Rett UK when Clare was young, and was awarded an MBE for her work.
I’ve spent many years trying to put myself in Clare’s shoes, wondering how it might feel to be fully aware of what is going on around you but unable to join in. It inspired the character of Patience, in my novel of the same name.
Patience also has Rett and lives with a family with whom she can’t communicate. Writing from her perspective was an emotional experience for me. Rett syndrome is so incredibly cruel. There’s a home video of Clare on her little
tricycle, taken before her regression. She’s laughing away, looking like a normal, happy toddler. Mum catches her breath when she watches it now, because she had no idea then how bad things were about to get.
And yet, despite all Rett’s devastating symptoms, science is now offering hope. Gene therapy offers the tantalising possibility that Rett might, at some point in the future, be cured. And in recent years, eye- gaze technology — where people control a computer screen with eye movements — has shown that some Rett women, particularly young ones, are very capable of carrying out conversations when given the technical ability to do so.
We’ve tried this with Clare. So far she hasn’t cracked it, but we won’t give up just yet and, in the meantime, we’ll make do with our own telepathy. Despite doctors’ doomladen forecasts when she was a child — my parents were told to ‘take her home, and keep her comfortable’ implying she wouldn’t live long — Clare has now reached the age of 42.
She adores my husband Teil, 46, and my children Raphie, 12, and Gabriella, seven, are very close to their Auntie Clare. When they were babies she loved to hold them on her lap and gaze adoringly at them as they babbled and giggled. Music is another of her ‘languages’. She still loves Kylie, Bananarama and The Sound Of Music — but sadly not my own personal obsession, Take That.
If music is upbeat, she will start to rock backwards and forwards and her hand movements will be frantic. If it’s sombre, she is upset. Walking In The Air, from The Snowman, always makes her cry.
My parents, who have been devoted to her for more than four decades, are amazing at paying attention to Clare’s cues.
If she is in pain they will know it just by looking at her. They might even be able to guess where the pain is coming from, just by her
I felt like an only child, albeit without the attention
To know Clare is to love her. She’s joyful, pure and honest
hand movements and rigidity. Recently, Covid forced us to spend two years apart. Clare can get very ill, very quickly. She’s had sepsis twice and pneumonia multiple times. She was far too vulnerable for me to risk visiting her, and it was only when she’d had two Covid vaccines that we were reunited, outdoors, with masks.
I was worried she might not remember me, might not connect the person she’d seen on video calls with the person in front of her wearing a mask.
I needn’t have worried. It felt like we’d never been apart, and the warmth of her hand in mine was salve for my soul.
Yes, it takes years to get to know Clare, to understand her ‘ language’. But it’s a labour of love. To know Clare is to love her. She is an extraordinarily pure, honest and joyful human being.
That’s why it is painful and frustrating that society often doesn’t see her that way, pushing Clare and people like her into dark corners, ignoring their needs and reducing funding for their care.
I hope that telling Clare’s story might inspire people who see her, and others like her, in the street to say hello, or wave, or smile, rather than pretending she isn’t there.
Because if more people could listen to what people like Clare have to ‘say’, the world would be a far better, kinder, more joyful place.
PATIENCE by Victoria Scott (£9.99, Head of Zeus) is out now in paperback, e-book and audiobook.