Anyone who follows me on Twitter will have seen the amazing news coverage Mum has been receiving over the past few days.
Last Saturday, exactly four months after being diagnosed with MND, my sister and I walked into a corner shop to be confronted with a rather familiar face beaming at us from the cover of the Yorkshire Evening Post.
A few weeks ago, Chelsea from the Communications department at the MNDA contacted us about a few blog posts Mum and I had shared (you can read Mum’s blog here). She was particularly interested by an event coming up in a few weeks that we had both spoken about – Mum’s wedding.
Mum’s ability to speak has almost gone. I’ve been saying that for weeks, as she becomes harder and harder to understand, but I can now only pick out a few words, and it takes a lot of effort on her part. Wedding days are emotional and exhausting enough without trying to force out your vows too.
So, Mum will be using her iPad to say her vows, and that is an evocative image. The press have jumped on this symbol of MND, and are spreading awareness of the disease we all despise by talking about Mum’s story.
To date, you can read the story in:
An interview was also broadacast on Made in Leeds yesterday (15th August) and will be sometime in the future on ITV Calendar.
More newspapers and magazines are getting in touch with Mum, Tim and Chelsea, so it looks like this is a story that won’t be going away just yet – especially as three outlets have asked if they can come to the wedding.
It’s safe to say, Mum is feeling like a local celeb at the moment. I mean, it’s understandable. The press want to cover her wedding. She even got recognised in the Co-op! This is what stardom feels like, guys.
Seriously, though, the impact it’s having on Mum is heart warming. When Chelsea first contacted us, I was worried that talking about her story, and seeing it being shared, would upset Mum. When you see your story in the paper and splashed across social media, you can’t ignore it.
It’s been the complete opposite. From day one, Mum has been excited about her role in raising awareness. Rather than making her feel vulnerable or defined by a disease, she has been empowered. Although her speech has almost gone, her voice is louder than ever before.
It is an evocative story. Many people dream about their wedding day from childhood – you never imagine that you wouldn’t be physically able to say ‘I do’. It’s heart warming to know that modern technology can help – it’s a feel-good story in a bleak and often depressing world.
The thing is, it isn’t a feel good story for our family. It doesn’t feel good to know I’ll never hear my mum scream at me from down the stairs, telling me to tidy my room, to offer advice after an interview. It doesn’t feel good to not be able to say how you feel, or what you think – to have conversation continue while you type out your words, or struggle to push them out.
Raising awareness feels good, but living with MND doesn’t. When you put down the paper, or the news carries on to the next segment, I don’t want people to just forget. Not when there are 5000 people in the UK alone who can’t forget.
I hope anyone who was moved by mum’s story feels more aware about what motor neurone disease is, what is is like, and how it can affect people. If you have found this blog through Mum’s articles, or her blog, then I hope we can give you an insight into our personal story, and please do get in touch if you would like to talk to us about our experiences.
And I will keep you all updated on how the media coverage continues.