Bean the dancing queen: my sister, Rett syndrome, and hope
Last Reviewed 24/10/2016
Sometimes I sit around and think of things my sister has never done.
Amber has never chewed a piece of gum. I hope she has never experienced heartbreak. She has never held a cold beer up to her lips on a hot day and said, ‘ahh.’ She has never sat a written exam.
Do you like to dance? Do you sing?
Do you chew gum?
My sister Amber loves dancing. She adopted the nickname, ‘Amberina Ballerina’ for her childhood, until we got lazy and shortened that name to ‘Bean,’ much more apt for a teenager.
I have dreams semi-regularly that my sister and I are dancing in ice-skates, under fireworks – a future I dream of, even with my eyes open.
There was a long time where Amber could hold my hand and walk side by side, with little trouble. Soon after that, with a bit more difficulty, she would drape her arms around my shoulders, letting me take just a little of her weight, and she would dance with me.
A couple years after that, it might take two of us to hold her up, but she’d be held up all the same. Then it was just a one-minute thing, her barely able to take her own weight, with her wheelchair right behind, just in case. At our Dad’s wedding this year, she danced entirely in her wheelchair.
For a really long while, we could move Amber from wheelchair to bed with a standing transfer. That is no longer the case. The last time I saw my sister, just like every time, there was something new that my Mum had to break to me: epilepsy, a feeding tube, a medical bed, drink thickener, an array of daily medicines, torture devices to fight her scoliosis, braces to combat muscle deterioration…..hoists.
I hate hoists.
I find issue with these things every single time. Sorry Mum, and sorry Amber.
I am a protector.
There’s something strange about loving someone with Rett Syndrome, someone vulnerable. Amber is 1 year, 5 months and 1 day my junior. I have taken on a role that perhaps I am not suited to, in personality by nature.
I am a protector. I am the angry person who shouts at your staring in public places. I am the one swearing about endless meetings my mother and sister have to frequently partake in with people who don’t know her like I do. I am the one micromanaging your interaction with my favourite person, and I am not sorry.
You can look at the NHS website for Rett symptoms. You’ll see agitation and irritation on that list. Girls cry for hours at a time for ‘no obvious reason.’ My sister understands what’s going on, is locked in her own body, tortured by lack of ability to contribute. She’s unable to speak, walk, or make controlled movements. Think – your entire teenage years without ever making a sarcastic, passive-aggressive remark. Because she doesn’t speak, she regularly has her intelligence insulted. Despite what the NHS website says, I can see every reason for her agitation and irritation.
My sister is especially good at rolling her eyes.
Recently Bean turned 21. Every year on her birthday, I feel somewhat the same nostalgia, the same devastation and the same guilt, but it’s changing a little bit every single year. It’s changing because of hope; hope brought about by the amazing work done by scientists like Professors Adrian Bird and Huda Zoghbi, who have turned a world with no hope, into a world where treatments and a cure are actually possible. The 2007 reversal experiments changed the lives of so many people I love.
There are a lot of things I want for my sister, mostly I want her to be able to express what she wants. I have a vision that Amber will not need hand-holding to pirouette, that she will breathe easy, and recite poetry at Christmas, that she will sing too loud and out-of-tune to music in the car, that she will run towards me at an airport and send me a selfie of her and someone she loves in a house they bought, that in our all-vegetarian family home she will laugh, and swear and throw some bacon in a pan.
ABOUT JASMINE DINE
Jasmine Dine loves someone with Rett Syndrome, a mutation on the MeCP2 gene that affects 1 in 10,000 girls and women. She studied Creative Writing at University and went on to work for Amnesty International and volunteer for Reverse Rett.