What scares me the most about MND, is loneliness. The idea that you become trapped inside your own head and nobody else will ever hear your voice again. It must be incredibly lonely.
Although my mum’s voice will never be the same again, at least I know she will not be silent. Today she got her free iPad, and conversation is hers again.
My mum is still in the early stages of PBP. Although her speech is weak, I can still hear her, and we can still talk. I can tell it’s hard for her, and it takes a lot of effort on her part. It sounds like her mouth is full of cotton wool – that familiar voice is muffled and strained. It’s there, but it’s not. I’ve said it sounds like she’s trying to talk with her mouth open whilst trying to keep her lips closed to obscure the unseemly sight of half-chewed food. It makes her laugh.
Her ebbing power of speech was most stark for my sister and I when Mum saw her dad and our dad.
My grandfather had not taken the diagnosis well. He was angry and could not accept what was happening to his only daughter, the child he fathered when he was just 19. He was worried about seeing her, about what he would be faced with. Although she’s still in the early stages – her limbs, reflexes and chest are all working as normal – it is hard to ignore the speech. Especially when you’re deaf.
My dad has been deaf since he was about four years old. They split up four years ago, and my dad hasn’t really come to terms with the divorce. Hannah and I sat him down and told him the diagnosis once I’d returned to Leeds from London. A week later, Hannah took him to see Mum.
On both occasions, one of us has had to interpret for our deaf family members, because they just can’t hear her anymore. I’m sure it was harder on Mum than she let on.
That’s why I am so pleased to hear that my mum has received a free iPad today! She will be able to speak to our deaf relatives once more. When she is struggling or tired, she no longer has to over-exert herself by trying to force the words out. I know iPads are not cheap, but the relief and hope it has given us is immeasurable. And just look at her face! She’s delighted by her new toy.
Over the past fourteen days, we have joked with her about the games and apps we’re going to download to keep her occupied. I can almost guarantee that as I write this, she is blissfully ignoring her fiancée, mother and the brother who has travelled from Coventry to see her. I wonder what’s she’s playing? Design This Home is her favourite at the moment, although she’s always been a fan of Criminal Case.
We’ve joked about how jammy she is – getting a free iPad, cheeky cow. We’ve talked about how we’re going to download accents and FaceTime her so much that it will drive her mad. The idea of the iPad enabled a chink of light to break through the darkness of those first few days. Now that it’s here, the fun can begin!
We are so lucky to live at a time when this technology is available to us, when she won’t be so trapped or as lonely as she otherwise would have been. I am thankful for small blessings, and this one does not feel so small.
Update: The app can wolf whistle! She’s going to be such a menace!