I turned up just after 2am. I found my self sitting on a bed. Sitting on our bed. Someone – Jo – was standing next to me. There was a woman at the end of the hall dressed in blue and white. I’d never seen her before but there wasn’t enough of me there yet for this to be unusual. For it to be anything.
Jo was speaking to me.
Do you know what’s happening?
My neck was aching. One of the joints in my back hurt too.
You’ve had a seizure.
I was with it enough now to think first – driving – and then: shit, we were going surfing this weekend.
There were two women at the end of the corridor now.
They’re from the ambulance. They’re going to take you to hospital. I’ll drive our car.
How long did the seizure last?
You were convulsing for about two minutes. That was 15 minutes ago. I need to get you dressed.
I’d wet myself.
I was walked out to the ambulance, and then lay there as they put a needle into my arm and hooked me up to something. One of the nurses had worked in Solomon Islands; Jo was talking to her about that. Then we were driving.
I don’t recall much of the drive. Being wheeled into hospital was odd and upside down, but from then I found my way to a normal quite quickly.
I lay in a bed in A & E. Jo sat with me. And I felt sore – my joints must have crunched convulsing – and sort of sick. Although once I was allowed to eat I felt less ill.
And that was me discovering I had epilepsy. A month ago now.
Ever since open heart surgery I have had spells of something akin to confusion. Deja vu, and a rush of memories of things which never happened.
Several years ago in Canberra I went and saw a neurologist: a chubby puffed-up man who thought way too much of himself, who told me I was suffering nothing more than anxiety.
I’ve suffered anxiety, and these spells were nothing like it. But while they weren’t pleasant, I couldn’t see the point of doing anything else after the dead end of that medical ‘professional’.
And so I went on, hoping I wouldn’t have an episode while giving a seminar, and not enjoying the spells when they occurred, but usually they were gone within 15 minutes. And I could live with that.
Then finally I had the tonic clonic seizure. And here I am now, struggling with not being able to drive. And wondering whether I can safely surf. And worrying about side effects of sodium valproate, and whether it will interact with warfarin. But at the same time better for having a proper diagnosis.
As philosopher Havi Carel wrote, when you are ill, how you are treated makes a big difference. I’m very lucky to have the support of my wife and family. It would be very hard to navigate all this on my own. Also, two weeks ago I had my first neurology appointment at one of Canberra’s public hospitals. The appointment lasted over an hour. The registrar was incredibly thorough, and the consultant was considered and decent. And they went out of their way to explain, and to answer our questions. Which helped a lot. According to the consultant, the seizures probably stem from something akin to a small stroke, which I must have had shortly after open heart surgery.
If you end up with a serious chronic illness, address the illness itself as best you can, but also prepare for, and manage, non-biological changes to your life. There’s a lot more to it than your physical symptoms. Your relationships may change. Your career may be harder to maintain. Your goals may have to shift. You can’t cure any of this as such, but being aware and managing it helps. And hopefully you, like me, will find plenty of space to be happy, even if it’s a struggle at times.
And don’t worry (although always get symptoms checked by a medical professional): seizures in the wake of open heart surgery appear to be rare, and heart problems as a consequence of Reactive Arthritis or Ankylosing Spondylitis are not common.
Sometime around dawn they discharged me from A & E, and Jo and I decided to take the weekend we already had planned. We watched Brazil beat Chile in the soccer, then drove to Braidwood where we had coffee and food, and then made our way down to the coast, where we lay and read on the beach, under the winter sun, watching the sparkling sea.