Blogs

Rett Syndrome and me: Love actually

Beth Johnsson

photo 10 300x225 Rett Syndrome and me: Love actuallyI have a confession to make. Somewhere around five weeks before Christmas, the hubby and I spend an evening wrapped in a duvet on the sofa watching ‘Love Actually’, again.

I realise this is probably an admission which will win me few admirers and that the somewhat schmaltzy, feel-good nature of the film isn’t everyone’s cup of tea (although I will vehemently contest anyone who says Richard Curtis is not a genius).

There are reasons why it is has personal significance for us, but not all films would weather the sentimental factor. This one does, and I think the reason is captured in Hugh Grant’s opening lines. “Whenever I get gloomy with the state of the world, I think about the arrivals gate at Heathrow airport. General opinion has started to make out that we are living in a world of hatred and greed. But . . . if you look for it, I’ve got a sneaky feeling you’ll find that love, actually, is all around.’

Back when we first watched this film together, young(er), in love and carefree in Australia, the scene and the sentiment were familiar and touching (both of us had some experience of saying goodbye and hello to loved ones at airports!) But today, the sentiment resonates far more profoundly.

November was officially ‘Hannah month’ in our town, although if you lived here you’d be forgiven for having thought it had been Hannah year. To list every fundraising/awareness-raising event which has taken place would be, well, far beyond my word limit, but here’s a taster: a lady who had never met Hannah or heard of Rett Syndrome shaved her head; the local Lloyd’s bank sold charity wristbands; the baristas of Starbucks replaced a tip box with a collection bucket for Hannah’s eye gaze; the staff and customers at Asda held numerous events throughout November for Hannah’s eye gaze; a local hypnotherapist (also entirely new to the world of Rett) held two charity hypnosis events; our friends  helped to run a huge second-hand sale and to pack bags in Asda,  friends of my mum, in another county, bought endless jars of homemade jam!

Hannah’s smile has become well-known in our town, people often stop to say hello to her and tell me that she’s famous. People whose names I do not know ask how they can help. The selflessness and generosity of people, not only those who know and love Hannah but also those who have simply heard her story, has brought me to tears, humility and gratitude repeatedly. I am Hannah’s mum, it is no great surprise or achievement that I would do anything to make her future brighter, but when others want to make it brighter too, it is something remarkable.

Three weeks ago, when a team of us (including several people who had never met Hannah or had any direct connection with Rett) packed bags in Asda on a Saturday before Christmas, I had anticipated a fairly negative response. I thought that stressed Christmas shoppers might not be too open to having their bags packed by a stranger, listening to a 60 second blurb about a condition they’d never heard of, or being asked for money for yet another worthy cause. I couldn’t have been more wrong, and I couldn’t have been happier to be so wrong.

The conversations we had with strangers on that day were priceless, the fact that those conversations led to significant silver in the buckets was an added bonus. People listened, asked, donated, even cried. It was powerful and it felt great, not only because of what we had passed on to others, but because of what they had passed on to us: an overwhelming sense of faith in humanity and in people’s inherent goodness. Not a bad way to feel a few days before Christmas.

Ironically, the tradition failed for the first time this year. Our film night was the same day as our bag-packing in Asda, and we were both so exhausted that we were asleep on the sofa before we even made it through the first half hour. A day of actually experiencing the sentiment meant we didn’t make it as far as the movie version. I still love the film, but the live version was pretty great: the honest feeling that whilst the headlines in Rett news might often be about the latest frustrating battle, or the incompetencies of some professional, or the relentless sense of fear, or the anger at funding cuts, or a stranger’s upsetting stares, the truth is that when we look for it, whether it’s Christmas or not, Hugh Grant’s clichéd schmaltz is true. And you don’t have to go to the arrivals gate at Heathrow to find it.

For more information click here

Tagged in:

Property search
Browse by area

Latest from Independent journalists on Twitter