I wrote a blog last night full of jokes, New Year cheer and determination not to spend 2013 being defined by my tumour; a pledge to get on with my life this year, rather than live from MRI to MRI.
At the heart of my new year attitude, I concluded, would be to get my drugs right so I could get through longer bike rides without having a seizure.
I wasn’t quite happy with what I’d written, so I decided to sleep on it. Come back to it today for another look.
It’s funny how much things can change overnight. Sometimes you get more clarity. Sometimes things become even more confused.
At 5.45 this morning I was awoken by a seizure, the first to happen when not exercising. It started off mild enough, the usual spiralling dizziness, the pins and needles shooting down my right side. Still groggy from sleep, I wasn’t quite sure it was really happening. A dream of a seizure, or something more?
It was only when a second wave came a few minutes later, this time deeper, more intense, that I nudged my wife sleeping next to me. She’s never seen me have a seizure before. I thought it might be useful to know what it looks like from the outside.
I couldn’t talk, my words came out garbled, but she immediately understood.
After a few minutes, the seizure settled down but didn’t go away as quickly or completely as previous ones have. She was a little shaken up. I was a lot disappointed.
Previously, I’ve only ever had seizures when exercising: running or cycling. Maybe due to my raised heart rate or body temperature; perhaps the muscle junk from exercise messing with my brain. Whatever the cause, my seizures have always been a reaction to what I’ve done to my body.
This morning was the first one without provocation. I was asleep, so I couldn’t have been exerting myself less.
A game changer.
Despite the higher level of anti-convulsant medication I live on, I now know a seizure could happen at any time.
If I can have one while asleep, I can have one on the bus. I can have one while cooking the tea, while playing with my kids, or on the school run. I can have one while eating with friends, while alone reading a book. I could have one before I finish writing these words.
No provocation required. No forewarning. Not a thing I can do to avoid it. The rules have changed.
From today the question is no longer whether I can get on the bike and avoid a seizure. It’s simply a question of when the next one will be.
Will my kids be safe when it happens? Will I embarrass myself among strangers who don’t know what’s going on? Will I be speaking in public about my new book? Will I enter a seizure and never come out of it?
My neurologist assured me at our last meeting that an increase or change in seizures doesn’t always indicate a change in my tumour. It’s reassuring, but as my February MRI scan looms I can’t help but take his words as what he thinks I need to hear. That scan will tell me whether the tumour is growing. If it is, I could be in big trouble.
Last night I promised myself I wouldn’t live 2013 from MRI to MRI. I pledged to treat my next neurologist meeting as routine checking-in; not something to paralyse me or prevent me from planning ahead.
Now I already feel like I’m hanging on to that pledge with the very tips of my fingers. I know when the fog has cleared, I’ll be able to take a firmer hold. It’s the only way I know how to carry on.
But today my head is too full to think even of tomorrow, let alone the rest of the year.
Update: 7pm-ish the same day, I had another seizure while serving a special New Year tea (moules et frites, since you’re asking) to my in-laws. Another non-exercise related seizure, though perhaps the kitchen was a bit frantic! Happy New Year!