There’s a game where there’s a group of everyday items on a tray, and you have a few seconds to try and memorise them before covering your eyes while one of the items is taken away. Then you get to look and try to work out which item is missing. I bet you’ve played it.
How often have you gotten the missing item correct? Every time? I doubt it.
How about if we played that game when you didn’t know you were playing it? What if it just happened randomly?
That happened to me 30 days ago.
It was 3.20pm on a normal working Monday, at my desk at home. I was on the phone when the first seizure hit. I don’t remember it. I don’t remember the mighty whack my head took. I do recall stumbling up the stairs and complaining of a headache to my son, and him sending me to bed with headache tablets.
Long story short; because working remotely doesn’t mean alone, and because friends trust their intuition and each other even when there’s no rational reason to, I rode to emergency in an ambulance. I just didn’t know what was happening. I didn’t feel strange because I couldn’t link thoughts together. I remember not knowing anything about what was going on.
Someone had taken one of those items and I didn’t know what it was. And it wasn’t fair because I didn’t know to pay attention, and I was tired and all the questions were too many.
I remember short moments. The bit where I didn’t recognize the Halloween decorations up in the house; being led out to the ambulance. I recall some funny moments, like Elisabeth randomly making the tap turn on in the emergency room. I remember the doctors saying words like aneurism and stroke as they tried to work out what was going on.
A couple of hours later, lying there in the ER feeling dazed and disconnected, I had the second seizure.
I awoke to people tying padding to the sides of the hospital bed and the taste of blood in my mouth.
Not the first time
When I was 17 I had two seizures in one day, out of nowhere. I pulled muscles while seizing that I didn’t know I had. I worked a lot back then. I had four jobs (seasonal Easter Show, FT job, PT job, and running a fan club). I was overdoing it. The doctors labelled me epileptic (a label I dismissed pretty darned fast because, seriously? Nope) and over the months I decreased the anti-seizure meds because they were dumb and I hated the doctor and… all the things. I was 17, just graduated from high school, and I had too much to do to be bothered with this.
Thirty years later, I am reminded (ironically) of how little time I have for this crap. I was supposed to be going to Chicago in a couple of days to work on our hackathon team, and I still wanted to even though the day before I didn’t know what the year was, who the president was, or even the names of all my children (sorry Max, I do love you). My colleagues figured it all out like super heroes and took it all off my plate. (Big love, huge!)
After a day in hospital, my son told them he’d be taking me home. I was clueless, but he’d slept next to me in the hospital and knew what to do. For those first weeks when my memory was dodgy as a two-dollar watch, he reassured me and looked after me, welcomed visitors and managed the stuff of daily life. I slept a lot, and over time began putting the pieces together, though the pieces are flashes of memory. I asked the same thing over and over. I wanted the answers, but I couldn’t hold onto them and sort them. There was no chronology.
I was determined to reclaim my life. A week after the seizures I was back at work, though I couldn’t yet multi-task. My colleagues knew I needed to work and they allowed me to, at my own pace. Each week I took on a little more.
Today marks one month since the seizures. I’m on anti-seizure meds and this is the first week I feel like I’m back to 99% capacity. I have consciously slowed down on some things and am trying to enjoy the process more than the output. Some of this is enforced. I’m not allowed to drive (ugh), which has stopped much of my independence. I also decided against taking level 5 of improv class because thinking on my feet is a pressure I don’t want to do for fun right now. That said, I am back working well, and for once am actually taking a little pride in what I achieve because I know that getting back to this after a month is pretty cool. The cognitive load of organizing travel, facilitating work and meetings, recording data and reporting efficiently is once again my own.
I’m aiming to get my running back to a regular 3 miles very soon, but my body took quite a hit so that’s something I am not pushing hard on. I love that when I go out to run, my head is thinking “Look at you! You’re rocking this! Your body is amazing” instead of the old, “You’re not going fast enough. You look silly.” I have run two 6 mile races in the last year, but the accomplishment of running 2 miles last Saturday felt just as good as those races did. Maybe even better.
The bruises have gone but my tongue will forever have a slight groove in it and be a little tender along one side (I know you’re cringing now, sorry), and weirdly I don’t regret that. But more on that another time.
For now, today, I’m one month seizure free. I see my neurologist this morning for the first time since I left the hospital. I’ll find out his determination (feels like a verdict) on ‘what I have’ and the course ahead. Independently, I’ve discovered there’s really not much scientific research has accomplished on epilepsy, seizures and treatment in 30 years, and that the internet has unearthed every crazy whack job on the planet with their pseudo-scientific analysis of a medical gap. My faith in science is more stable than ever because of those whackadoodles, even if the doctors don’t yet have every answer. Lord, I hope I agree with the doctor today. I really, sincerely do. Because I guess I will need to abide by this – nothing else makes any sense. I just hope he doesn’t take anything else off the tray and try to make me remember what it was. That makes me really emotional.
None of this makes sense.
And so we continue.
Thank you, thank you, thank you to everyone who helped, called, came, messaged, prayed, reached out in any way over the last month. You know I thank you. I really do.