Epilepsy is pretty rare. There are one in 100 of us. This is an adaptive story. Just substitute the word ‘seizure’ with ‘flair up’ or ‘mood’ and we’ll be on the same page.
When I wake up on Thursday morning my head is full of fog. I have a concussion, and all my rainbows-and-roses optimism has crumpled into a ball of, “fuck, fuck, fuck.” When I first start getting ill, I always have enough bounce in me to quash all those ‘fucks’ and say, “Tomorrow is a new day.” Seizures are not all that bad when they come in pairs. I spend a day doing nothing whatsoever. Tomorrow will be different. Every day is a new beginning. I can forget yesterday if I try hard enough. I’ve been doing it long enough to wear a black belt in this-morning-is-new attitudes.
That first seizure might have been on Thursday. Maybe it was Tuesday. The whole week is a blur so I can’t be sure. I go to bed that night knowing that the next morning is new, that I will start over, all glitter and feathers and joy again. And I do…until 10 am when I have another seizure. I don’t call my doctor. You really don’t give a fuck about those things in the moment because it’s impossible to really think about anything beyond that tomorrow morning is new. You will start over, and all will be rainbows and daisies again.
I even enjoy the downtime a little. It’s easy to do that when I know I’ve had remission for six months so a real relapse can’t happen. I know I’ll return to perfect health, and that’s what happens. A week of waking up well will give you a whole cluster-celebration of new mornings, each one better than the one before. Up and on we go until Monday arrives. Now the week is new. I am at my most disciplined. I will conquer my workload like the hardcore optimist I am.
I’m so healthy on Tuesday I could bound around my home like a hyperactive puppy. I’m up before dawn and finish my work by 11 am, so I know I’m officially better. I go out to visit a friend because that’s what you do when the week is new and everything is rainbows and daisies.
On the way home I wake up lying in the street. Fuck, fuck, fuck. Epilepsy is fucking humiliating, but there’s a storm coming, so I try to rush home with figurative blinkers on so that I don’t see any stares from bystanders. I take a few new steps before I realise I’m a bit concussed. My head feels as though it’s in a vice.
I know how this goes. Three seizures in the space of a week mean my remission has slipped away. Fuck. I have enough self-pity to fill a small lake. If I let myself swim around in it, I’ll get lost for a week. I dip my toe in it instead. Hell, I’m still dipping my toe in it—I feel fucking sorry for myself. Looking ahead, I have no idea what’s coming anymore, whether I have months of seizures in front of me or will lose my ability to put in an eight-hour workday. Maybe the unlikely will happen and I’ll be done with all these seizures for another six months.
One of my favourite songs goes, “The future is no place to place your better days.” I’ve been too ill for too many years to give up on what today has to give me. I must find something worth loving in this current, concussed fucking moment, regardless of how furious I am. Sometimes ‘tomorrow is new’ isn’t enough to keep myself away from the anger. Sometimes I have to say, “This hour is new.”
“This morning is new
No matter where or when we wake up
No matter what we do
This morning is new