I’ve had an amazing weekend in the Midlands: spending time with my dad, then my brother and his lovely family, drinking cup after cup of tea, playing Xbox and Cluedo, talking rubbish and generally not thinking about tomorrow’s results appointment with my neurologist.
Sunday wasn’t a great day health wise – five seizures during the day and another over night – but the banter and warmth we shared shielded me from too deep thoughts about what my latest MRI might reveal.
This morning I did a little work, finishing an article I’d been asked for, and then answering a few emails. The usual Monday morning of getting my work straight as if it was just a usual week.
But as I climbed onto the London-bound Virgin train and set my mind to working on something for the future – a new book proposal – I had a mild seizure. It acted like a huge pause button that I know will stay pressed until this time tomorrow.
How could I work on something for the future, when from tomorrow everything might change? What’s the point of putting new things in the diary today, when tomorrow I might have to delete them to make room for appointments, treatment or something else?
I’ve tried to work, but instead of the proposal on my screen, all I could see were my children. Instead of my work calendar, I saw blank uncertain months.
It’s not that I’m nervous about tomorrow. I’ve not spent today playing scenarios in my head. I’m not sitting on the train going over a series of what ifs.
It’s just that the prospect of tomorrow’s meeting has, this morning – particularly after a weekend of seizures – generated a deep feeling of sadness in the very pit of my stomach.
With less than 24 hours to go, I know I won’t do any more work today. Writing these words is the closest I’ll get.
During the wait between my last MRI and results day, my wife and I went a bit nuts. We were lucky to have shared that time with excellent, understanding friends who gave us the space we needed as we spiralled up and down, round and round.
This time, we’ve kept our sanity better. This weekend my brother’s love, as well as games of virtual reality bowling, have helped take my mind off what is to come.
But now I’m sitting incredibly alone, on a train that is taking too long to get back to my family. Tomorrow, I’m sure, the journey for my appointment will feel further and slower still.
All I want to do is get home, read my kids stories, feel their warmth, tell them silly jokes and listen to their funny songs.
Then I want to go to sleep, curled up with my wife in my arms, our feet wrapped together. And to pause that moment for as long as possible.