Most of you who read this little blog of mine will probably already be aware that June is MND Awareness Month. It’s also my mum’s birthday this month, and the month I will be undertaking my first fundraising efforts for the MND Association – so a big month all round!
Today is the best day to talk about the brilliant #MyEyesSay campaign, seeing as I just picked up my new glasses today.
This campaign is absolutely brilliant. It is almost a cliché that the eyes are the window to the soul, but when you have MND, it is true. When you can’t express yourself by speech, and the software cannot provide the inflections which indicate emotion, it is through the eyes that you can see how someone truly feels.
My mum can still speak, although it is difficult. Consonants are especially difficult, particularly plosive phonemes. She has to break longer words into their syllables when she tries to pronounce the consonants in the middle. My name – ‘Victoria’ – is ‘Vict. Toria’.
Sometimes, my mum does cry, and she does get scared. She knows her speech is the main part which has been affected by MND at the moment, and she is aware that a day will come when the words won’t come out anymore. She is scared that she will become trapped inside her own head, isolated from the world by the barrier of muteness.
‘I’m still here,’ she says, pointing at her head. ‘I still understand.’ And it’s true.
Whenever we talk about it, whenever she is upset about it, I take her hand and look into her eyes. I always say, ‘I know you’re there. I know you’re not going anywhere. And when the day comes that you can’t talk anymore, I will always look into your eyes and see you there.’
I think this is a way of communicating which I learned from my dad. He is profoundly deaf, and looking into his eyes when speaking slowly and clearly is the best way to communicate with him. Of course, Mum won’t lose her hearing as a result of MND, but I have always taken on board that lesson in communication, and it will keep me connected to her, long after her speech has gone.
My mum will always be present in her eyes. When she can’t squeeze my hand, or pick up our dog, or laugh at my nonsense, I will always see it in her eyes. I’ll see the sympathy behind her wanting to squeeze my hand. I’ll see the joy and longing to cuddle Oscar whenever the pug walks by. I’ll see her eyes light up and shine when I am being ridiculous.
That’s the brilliance of the #MyEyesSay campaign. It is a new and innovative way of thinking about motor neurone disease and raising awareness. So many people don’t understand what happens when someone has MND. It can be easy to assume that with neurological disorders, someone’s personality changes, or their way of thinking changes – they become someone different. When someone can no longer speak, it is easy to assume they can no longer hear, or no longer process speech.
Just because they can’t express themselves in the way they used to, doesn’t mean they’re not there. When you look into their eyes, they are there.
What do their eyes say that their body can’t?