The hippy provides a very long overdue update on his epilepsy. Seems like things are not as bad as they’ve been, and that’s created quite a quandary for our favourite fake hippy.

I haven’t had a major seizure in nearly 14 months. It’s the longest stretch of me being seizure-free since all this epilepsy nonsense started.

You might have noticed I said “major seizure”, meaning the type that lands me in the back of an ambulance for a free trip to A&E. I do continue to have partial seizures occasionally, but nowhere near as frequently as I did before I started treatment.

Partial seizures are not as scary as tonic clonic seizures. There are two types; simple, and complex, and I have both. 

For me, partial seizures have often preceded, and triggered tonic-clonic seizures, but these days, I think my meds are preventing them from becoming worse.

A simple partial seizure is one where I am aware that it is happening. It’s starts with a weird feeling of unease, followed by a series of strong emotions, the first of which is desperately incredible sadness, followed by a huge sense of massive impending doom. If I don’t go on to have a major seizure, I then have a brief period of aphasia, and my heart rate increases dramatically. 

A complex partial seizure is one where I am not aware that I’ve even had it. Before I was diagnosed, I referred to this phenomenon as “brain blips” or “time skips” because I would lose a few moments of consciousness. Imagine watching TV, and your mind wanders, and for a few minutes you’re tuned out of what’s happening on screen. It’s sort of like that, only you’re tuned out of life. A big clue I’ve had one is a heart rate spike, which gets picked up by my Apple Watch.

For the first three years of having partial seizures, I didn’t know what they were. I thought it was having some sort of breakdown. Now that I do know conclusively what I am experiencing, I cope with them much better. They’re disorienting, and unsettling, but they’re nothing like the really bad ones that have nearly killed me. I still wouldn’t be able to drive a car, or even ride a bicycle, but it is progress.

Why am I telling you all this? Because for the first time since all this started over 6 years ago, my brain may actually be stable, and I am not at constant risk of SUDEP. I really believed epilepsy was going to kill me, and it hasn’t. And all that leads us to the title of this piece: “Now what?”

Now what? It’s a question I’ve been asking myself a lot since I passed the one year mark of not having a big, bad seizure. My previous record was 361 days, and as of today I am at around 418 days without a major seizure. Go me!

Now what? I genuinely don’t have a clue. I miss working, and would love to find something fun to do, maybe a day or two a week. In an ideal world, working from home, but since I’ve been major-seizure-free, I have been braver about venturing out into the wider world. Well, somewhat.

There are other issues, like the fact that I haven’t properly gotten dressed in like 6 years, and my clothes don’t fit me any more. I’ve lived in sweatpants, and tee shirts, while barely leaving my house. 

I also haven’t been around other humans in a very long time. I’m not sure if I remember how to do it. I wish I was joking, but I definitely feel like I have de-socialised myself to a worrying degree. 

I haven’t had a coffee, or a meal outside of my home in over 5 years. I had lunch with a friend of mine not long before the first lockdown of the pandemic, that was my last visit to a restaurant. That’s a long-assed time ago.

I genuinely don’t know what to do. I’ve been so isolated, and unwell for so long that I’m not sure if there is any way back to anything even slightly normal.

I consider contacting people I used to know, to seek advice, or some freelance work, and then I talk myself out of it. They’ve probably forgotten me, or they’ve heard about my health issues. Or maybe they found out I am the internet’s favourite fake hippy? Who knows? Not me, because so far, I haven’t pursued anything. 

I also worry about rejection, I’m not sure I am as resilient as I used to be. There’s a lot of things I used to be, that I’m not any more. Thanks to my epilepsy, I have turned into a “used to be”, full stop.

They say it’s better to be a “used to be” than to be a “never was”, but I don’t know who “they” are, or if I believe them. If I was a “never was” then I wouldn’t know what I was missing so very much.

If you know anyone that would like to hire an old weather-beaten, broken down, short, fat, bald, fake hippy, with maybe properly managed epilepsy, then please get in touch. If I think I can do whatever it is that you need doing, I’ll do it. And if I can’t, I won’t be shy about telling you I can’t. 

Try me. I still think I can useful to someone, somewhere. I’m just lost on what to do. And I still keep asking myself the same question, over and over: Now what?

PS – Don’t forget my brand new feature – #HHOTW – Hippy Highlight of the Week – every Friday evening, right at the top of my website.

After a 30 year career as a journalist, working for some of the largest news organisations in the world, including Associated Press and Reuters, and 15 years as a duty news editor for BBC News, Doug – the northlondonhippy is now a full time hippy, and writer. And for the last few years, he’s been #EpilepsyHippy. His life was a whole lot more fun before gaining that new title. For real. 

Doug is also the author of “Personal Use by the northlondonhippy.”   “Personal Use” chronicles Doug’s years of experience with mind altering substances, while calling for urgent drug law reform. It’s a cracking read, you will laugh, you will cry, and you can bet your ass that you will wish you were a hippy too!

If you want even more, (and who wouldn’t?) you could always check out Hippy Highlights – which is the best of the best stuff on the site, and it’s all free to read. What are you waiting for?