I normally try to keep quite upbeat when it comes to living with epilepsy. I reflect on how I basically have it very good, how epilepsy doesn’t impact my life too much and how things could be so much worse.
Today made it very hard to think positively or optimistically about epilepsy in any way.
This morning, while in London City Airport, between (very approximately) 0900 and 1030, I had five (for me) severe seizures. They started with my usual inability to read what was in front of me – in this case, the departures board I was reading, trying to work out just how long my flight to Dublin was delayed.
This spread to the laptop screen in front of me, as I attempted to decipher a client email, which suddenly appeared to be a string of cities. The same cities that had appeared on the departures board. I know I’m having a seizure when the text from one source appears everywhere else I look, like a freaky ghost image.
I closed my eyes and took a deep breath, bracing myself for the inevitable experience to follow. And my brain didn’t let me down.
A feeling of inexplicable dread, rushing thoughts and intense, intense focus on the table in front of me. And then, as if someone flipped a reset button on the back of my head. Nothing. No idea of where I was, why I was sitting there or who the people were around me. I was traveling alone, so to be fair, they were all strangers.
Reality slowly dawned and my memories and awareness returned over the next few minutes. I weighed up my options. I was supposed to be flying to Dublin for two days of client meetings and some coaching sessions. If this was a single seizure, I’d snooze on the plane and then work through the inevitable headache until I could get into bed. I probably have to cancel the client dinner, but no harm done.
Sadly, just as soon as I was able to think clearly – marked by me as being able to read the logos on the planes just outside my window – I had another, stronger seizure. I had to squint through the confusion and gripped onto the table as I started to feel like I was falling. Except I wasn’t. Temporal lobe epilepsy messes with your reality and as my seizures are now limited to the complex-partial type, I don’t fall to the ground and exhibit ‘typical’ symptoms.
In fact, I’ve been around people previously who had no idea I’d even had a seizure. It mostly goes on in my head, with very little difference externally, unless I’m speaking to you. Or you’re speaking to me and I don’t respond. Or I burst into song while trying to speak. That only happened the once, but it was to an audience of about 25 people. So it’s memorable.
I sat there and waited for it to pass. Which it did, eventually. I think it took about 15 minutes before I felt anywhere normal. I then had another, not as strong, but enough that I couldn’t move from my seat. I was now in a lot of pain due to the headache and wanted nothing more than to curl up in a soft, warm bed. I had to abandon the Dublin trip and find my way out of the airport.
In my state of mind, that was harder than you’d expect. I looked distinctly ill – a trip to the bathroom confirmed just how pale and ‘shaky’ I appeared. I had to queue at the information desk to find out just how I could leave the airport. I’d already gone through the utter hell of security and was in the departures area. I’ve never walked away from a flight before, so I’d no idea what to do.
I very quickly explained my situation and a very kind British Airways team member escorted me down to the baggage arrival area via several back doors and stairways. I was then on automatic pilot, making my way home via DLR and tube. Yes, a taxi would have been quicker, but the very thought of getting into a car then made me feel nauseous. I kept my shit together until I got home, but then had yet another seizure in the foyer of my apartment building. I had no idea where I was and had to text @FrankDJS to come down and escort me upstairs.
I then spent about four hours in bed, alternating between sleep and panic, waking up thinking I’d missed my flight. I still have a killer headache and no painkiller ever touches these, so I don’t bother. I’ve sipped tea and water and tried to keep still.
So it’s been a bad day on the epilepsy front. But this time, it’s impacted my work too. There was absolutely no way I could have worked in Dublin today, so mature me knows this and understands I did the best in a bad situation. But I’ve let people down and, despite all their friendly and supportive messages, I feel like I’ve failed.
Fuck you, epilepsy.
Working for yourself is hard enough without you getting in the way and taking me out of action. But… tomorrow is another day. I’ve managed to rearrange my flights – @FrankDJS did this for me while I dozed – and can go to Dublin tomorrow instead.
I should feel like a new man by then, but for now I’m exhausted, disappointed, in pain and in need of even more sleep.