In a new regular feature sharing the stories of remarkable locals, we meet Naomi Strain, who lives with epilepsy. Having seizures makes life difficult, yet she refuses to let it define her, as Justin Eade finds out.
My first seizure was in 2007. It was tied to getting the bends from scuba diving. Diving was my life in the UK and I did a lot of long, technical, decompression dives which ticked all the boxes as being damaging for the future. So it’s now classed as a traumatic brain injury and I’m very lucky that I only have seizures, but otherwise still function pretty normally. I was about 30 when that started. I’d never had anything like that before, so it was a big shock. I was driving, and my last memory was at the Haven Road/Halifax Street roundabout, and then I drove past Riverside Pool apparently, and ended up in a Rockery. I got taken to hospital and they just classed it as a blackout, because the seizure itself wasn’t witnessed by anyone. About three months later I had another one at a shop in town, and because that was witnessed they said, ‘okay, this looks like it may be epilepsy.’
Secondary injuries
I have a litany of secondary injuries from having seizures… I’ve broken ribs, broken my wrist, lost vision in one eye, smacked my teeth out, been in a coma twice, had multiple black eyes, multiple concussions… burns, cuts, scars. My seizures can be quite long, and it's exhausting, but generally I'm going to be okay. But the injuries resulting from them can be more dangerous.
I have epileptic and non-epileptic seizures. The epileptic ones are pretty much manageable with medication. But the majority of mine are non-epileptic, and they’re from the traumatic brain injury. So the dangers of me not breathing well or having a brain bleed are less - it’s more the secondary injuries that are the danger.
Choosing to be positive
In the last 10 – 15 years the seizures have been constant, sort of like weekly. At first you are fearful of going out, of being embarrassed in public, or causing a fuss, or being a burden. But that gets really boring after a while. Do I just sit in my lounge until I die? It’s going to happen anyway, so if I’m going to have a seizure, I’d rather it happen in the middle of a full, happy life, rather than just yet another bad thing in a boring life.
To be positive is definitely a choice. At the end of every day I’ll ask myself ‘what was the highlight?’, because even on the very worst days, there’s always a silver lining. Like I had my bag stolen a few years back while I was having a seizure and the two lads who stole it, I got them to do a first-aid course rather than report them to the police. I always try to be restorative, and that was at least a silver lining for them.
Each day is a brand new day. Yesterday could have been the worst, but the next day, I cut that off. If I’m facing a new day and I’m still stressing about the crap that happened yesterday, I’m not enjoying what’s currently going on. Having seizures has actually made me a much better person than I was, because I live 100% right now and little stresses don’t get to me as much as they used to.
After a seizure
After a seizure I should relax, slow down and recover, but I have this fear of being seen as lazy or unmotivated, or a burden on society. I’m determined not to be seen like that, so even if it’s just a walk around the block, I’ll do something to be like a normal person. Even though having seizures is a huge part of my life, I don’t want it to be my defining factor. I don’t want to be seen as that person, but more for my theatre shows, films, or stand-up I do.
After a seizure, I give myself a 24 hour window, where I can feel as rubbish as I need to. But that’s my maximum window. At the end of that, you’ve gotta be back out… deal with it, and get on.
Little feline helper
My cat, he’s great… he can pick up when things are going wrong… so when he’s being super, super cuddly, when he won’t leave me alone, that’s a sign that something’s going wrong. They almost have this psychic ability to pick up something in the atmosphere. There’s been times when I’m on my own at home, and I’ll come around, and he’ll be sat on me and he’ll dig his claws in and not let me move… he’s a bossy little sod.
I have a medical alarm at home and that gives me some kind of security. It’s motion activated, so if I fall or slide, or shake around violently, it will go off. It goes through a box on the wall and they talk, and if I don’t respond they’ll send an ambulance.
The creative life
The artistic, creative side means everything to me. In film, I write and perform and am even dabbling in directing now. Film is good because if you mess it up, you can go again, but in theatre, you get an immediate response.
Some of my more memorable films are Trash Talk, War of the Woods, and Gangster Nicknames. And some memorable theatre shows are Rampage, The Trial, Children of the Poor, and The Naked Truth.
Standing up, turning up
I knew I had lots of funny little stories, and I thought ‘I’ve got a story I could turn into a stand up show’ for the Nelson Fringe. ‘Rampage – the true story of a drug-fuelled adventure at Nelson Hospital’, is about one specific incident when I was in hospital and my medications caused me to have a complete psychotic breakdown.
I didn’t want it to be too self-serving, like, ‘look at poor me and what I deal with’. So it’s not a depressing show at all, it’s more of an uplifting thing. Some of the photos of me on stage, I’m having a whale of a time, and the feedback’s been ridiculously good. I won Best Local Show and Best Stand-Up Show, which is really flattering because my intent was only to write a funny show and have a good night out. We had three sold out shows and an encore performance at the Playhouse Theatre. It’s been empowering because I’ve done the whole thing on my own from writing, directing, performing, producing, promotion… everything.
Community minded
The Nelson community in general is lovely and mostly very wholesome. With my seizures, most of the time I’ve been very well looked after and people have been really respectful. Nelson has a good vibe like that, most people are really gentle and caring to one another. I try to be a positive voice, especially in internet community groups.
To make sure I'm a useful and productive member of society, I pay attention to neighbourhood groups, community centres and requests from friends. When people need assistance with things like cleaning or moving house, sometimes just a visit, I step in when I can. There’s so many people who fall through the cracks, that have either got particular needs, or mental health issues, who need assistance but don’t qualify for official help.
What’s next?
I’d love to do more writing, I’ve got about four or five scripts in my head, and would love to do more films. And I’ve got an idea for another play for next year’s Fringe.
I’m a lot more involved in the Nelson community than I have been anywhere else. Nelson is my home now, because it’s about the people, and I have good friends here. My family come out and visit me here, which is great because it’s amazing here.
