I was sitting at my dressing table, trowelling the makeup on ready to face another day. P was getting ready as usual, but this time when I looked round he was kneeling down, his head on the floor in some kind of praying position, trying to dry his hair with the hair-dryer he can no longer lift. “Let me do that for you” I said, trying to fight back the tears. “No” he replied. “There’s always a way”.
You see, my husband is dying. Sounds a bit dramatic doesn’t it? But the fact is, that at the age of 41 he’s been diagnosed with Motor Neurone disease and probably won’t make it to 45.
When I sit and write those words it sounds heart-breaking, and there are times when the world seems so black we can barely get through the day. There are times (although increasingly rare) that we don’t think about the diagnosis at all. But most days we face the music with humour as much as we can, because that’s the only way we know how to cope.
For example, P used to enjoy singing. He would sing during a long commute in the car, in the shower, around the house; he was always belting out some tune or other. He never got the lyrics right. He would sing the most random words to songs (think Peter Kay’s “just let me staple the vicar” routine). And he was flippin’ LOUD! He still tries to sing occasionally, but the signals from his brain to his speech muscles no longer work properly, so when he’s three lines behind the rest of us I can’t help but laugh at how ridiculous he sounds! He says I’m an evil b*tch for doing so. But if I didn’t laugh I’d probably cry.
Comedy falls are also hilarious of course. P’s core strength is now so weak he can’t stop himself from hitting the deck when he loses his balance, like most of us can. You can imagine the fun we’ve had in the recent icy conditions! Whilst we were out on a country walk last weekend he totally lost his footing in a muddy field, and because his arms are too weak to break his fall, he ended up covered in mud from head to toe. The boys were laughing for hours!
But I have decided to write this blog for a more serious reason. Me, P and the boys all know that over the next year, or perhaps two, he’s going to become a man we don’t recognise. He will be with us, but trapped in a body he can’t control, and his voice will be heard through a computer. I don’t want to forget him. I want a record of this part of our life, both good and bad and everything in between.
So, this is the first of many blog posts about how this ‘short circuit’ in P’s brain is taking hold. It might make you sad at times, but my intention (for those of you who know him) is to take some comfort in the fact that that my wonderful husband is facing this illness with strength and positivity. Something that helps me and our two boys through the most difficult days.
Until next time…V x