Until the last couple of months the only indication of my tumour’s presence would be the seizures I have that only I can feel. Unless you were looking out for it, you probably wouldn’t notice I was having one.
But more recently, as my seizures and tiredness have increased – we hope just a temporary low in the ever oscillating ebb and flow of my condition – I have started to experience speech problems too. Particularly when I’m tired or under pressure to say something quickly.
I’ve started jumbling up my syllables, stripping up over toonerisms and runningafewwordstogether so it sounds like I’m drunk.
Most pronounced is when I can’t quite find the word I want.
It’s not that I’ve forgotten it. And it’s not that the word is on the tip of my tongue. It’s more like – in the dictionary of my brain – the space where that word belongs is simply empty.
Like watching an internet video with a slow connection, my mind buffers until the word eventually fits back into its rightful place.
It means I trail off at the end of sentences, unable to finish. Or I end up saying things like: “Can you pass me the, the, the, you know, the… milk?” Or I repeat words just to make sure I’ve said them.
I’ve sometimes lost track of what I’m saying completely and have had to slow down, and force myself to start again.
“Hold on, let me just get my thoughts straight for a second,” I said yesterday while making a tup of key.
The development doesn’t come as a surprise. From day one, I’ve had speech difficulties while having deeper seizures (see this video). My tumour is right up against the part of my brain responsible for processing language and turning it into speech.
Many brain tumour patients experience similar dysphasia. I don’t doubt that when the tumour starts to grow aggressively, my language will be one of the first things to go.
But with any luck, we’re nowhere near that yet. The language problems will go away as soon as my good health returns. I don’t feel my confidence is dented, and I don’t have that many opportunities to speak in front of a crowd anymore.
But it does beg the question: When my language really does start to falter, will I mind when the person I’m talking to helps me along?
I met a solicitor once who’s stutter was so bad it was almost impossible not to offer up the word we both knew she was trying to say. She must have been used to it but – however sympathetic and patient I tried to be – I found it absolutely maddening. If I just said the word, I thought, we could move a lot quicker, couldn’t we?
My wife already does throw in the odd word (but I think couples do that to each other anyway). A few others have started to do the same. So far, I don’t mind.
But now, even my kids have started doing it during bedtime stories.
Just like I used to when she was first learning to read, my five-year-old will gently nudge me towards the sound I’m stuttering over. Or she’ll complete the word if I simply can’t get it.
She often hugs me tighter when she does it, as if to reassure me. My son asks kindly if I’m having a ‘dizzy’, whether I need to take my medicine.
The swapping of our roles is heartbreakingly sweet and painful in equal measure.