I still think a time will come when I won’t notice. I won’t remember. There will be no chime as it strikes 12.
Six months later, and here it is again. 12. 12th October. Six months since we were told Mum has progressive bulbar palsy.
PBP has an average life expectancy of six months to three years from the onset of symptoms.
We first noticed symptoms in December 2016. I just thought her slurred speech was one too many Snowballs. That’s why I didn’t think this date would mean anything to me.
But still, we get to 12 and I notice. The chime in my head rings. Another month passed. Six now. That dreaded six.
I’m being stupid. Right from the start, we always said we would ignore what the doctors say. Everyone with MND is different. The disease progresses in different ways for different people. It can slow and accelerate, and even seem to stall. There is no predicting it. So what’s the point in burdening yourself with fears over how much time is left, when you cannot know.
It’s especially stupid because I know Mum is doing remarkably well. Her MND nurse has said so. That dreaded six months on, and actually Mum’s breathing still seems to be fine. She requires no assistance.
She can still walk, although not too far. She has a little trouble with her left arm, but still has full use of her hands. She can still read, and sew, and colour. She can still stroke the pug, and play games on the computer. All the silly things she loves doing – they’re not lost.
It’s true that she can’t swallow very well. Sometimes when she’s speaking, I will stare at her, desperately trying to work out what she’s saying. But other times, I hear her, I understand her. I know it’s getting harder, and will continue to get harder, but right now, we are not despairing. So why should the date matter?
Partly I know it’s just part of my personality. Perhaps that’s one of the reasons I studied history – I’m good with dates. I find the almost circular nature of calendars and time fascinating. Anniversaries mean a lot to me. And something as life changing as the 12th April was is just ingrained in my mind.
That’s not part of my sister’s personality, and she doesn’t have the same reaction when the 12th rolls back round. She doesn’t really notice at all; it’s just another day. Is that because she’s on the frontline of my mother’s care, whereas I am 200 miles away, constantly wondering what’s happening wherever my mum is? Is it just my quirkiness?
Is it just a case that as time continues to pass, I will notice less? I expect the 12th April won’t be a date I’ll forget easily, but the 12th October will eventually be just another day.
Sorry for my musings. I hate the fact that six months on, I think about all of this stuff so much. I didn’t realise I had enough space in my mind for it to be constantly there, lurking in the background. What’s happening? What will happen next? How will we cope? What can I do to prepare? What can I do to make her – us all – happy?
Life carries on, as it must. You get up in the morning and go to work. The house must be cleaned and the ironing needs doing. Normal stuff.
You go out with friends – go to pubs or restaurants. Go out for the day. Smiles and normal conversation are the order of the day.
Maybe I’m just too self-absorbed, but it’s like an itch I can’t scratch. Six months ago, I feared I wouldn’t be able to reach the normality I now have, but also hoped that it wouldn’t define who I am.
Six months on, I think I’ve got a good balance, and I can at least focus on other aspects of life. My sister is working on it too. It’s harder for Mum, of course, but we do what we can to make her happy – including her trip to London in just two days.
Enough of my ramblings. The date does that to me. I’m not intellectual enough (or pretentious enough?) to be a philosopher, so I’ll quit while I’m ahead.
The next blog post will be about the parliamentary reception on Tuesday, followed by a round up of Mum’s first trip to London in 10 years. Something positive – the most important thing to concentrate on