Involuntary Laughing - It’s a Seizure
I’m Jo Mackenzie1 . I also go by several other monikers: I’m ‘nanas, to my sisters; my niece calls me Auntie Jo-Jo; and to those who read my blog, I'm Goldilocks2 . However, since I turned 13, I have had to accept the fact that every now and again, I become Epilepsy3 Jo.
Epilepsy Jo is the woman sitting where I was sitting; from the moment a seizure4 starts to the moment it ends. It’s Epilepsy Jo who during a seizure picks at her clothes, fiddles with anything within reach, raises her eyebrows, and smacks her lips. It’s Epilepsy Jo who, as a seizure starts, makes a guttural noise like (really terrible Mongolian throat singing5) . When the seizure does end, she vanishes, and I’m left to explain the reason it happens. I’m the one who has a diagnosis of focal impaired awareness seizures6. Mine are unpredictable, uncontrolled and they’ve changed who I am. They’ve changed me for the better.
I haven’t always felt like this however; it took work.
I was diagnosed with epilepsy when I was 13. Although I believe that Epilepsy Jo was in my life a long time before that. This has never and probably will never be confirmed. Doctors at Great Ormond Street Hospital 7 , London 8 , advised my bemused and confused parents that the blank events they had attributed to attention-seeking were absences 9 . I moved from absence seizures as a kid, to gelastic 10 seizures as a teenager. For the last few years of high school every so often I would let out a hee-hawing-cackle. It was as uncontrollable as it was embarrassing. As a teenage girl I just wanted to fade into the background and my brain was bringing me to the forefront, in the worst possible way.
At 18, depression 11 hit. All my friends lived ‘normally’, without medication. Why not me? So, in protest, I just stopped taking it. Within 3 days my brain countered and I was found unconscious. I remained like that for 5 days. When I woke up, it wasn’t me. I didn’t know my name; I didn’t understand how to use a knife or a fork. I didn’t recognise the clothes in my wardrobe. For nearly nine months this went on and I had to be cared for 24 hours a day.
Ultimately (almost like a light being switched on) I returned. It was like my brain had undergone such stress it had needed a prolonged time-out to fix what had happened.
Newsletter signup
When the light came on, anger set in, very quickly. I made the decision there was no time to waste. I had to get out. I needed to put incredible distance between me and what had happened. I went to Australia12. and stayed there for 12 years. I barely spoke to my family in that time. The family that had supported me through a time most families never experience, let alone cope with. And, if you spoke to my friends in Australia many of them would be surprised if you told them I have epilepsy. I ignored it out there. I took the meds’; after what had happened, I was too frightened not to, but I told no one.
That’s denial.
Melbourne, Australia
In my twenties, living with the condition I was angry. I hadn’t accepted Epilepsy Jo. I was still so irritated that it was me who had to deal with this condition while my friends lived the lives that I wanted to live but couldn’t. This anger stemmed from the fact that throughout the years, Epilepsy Jo has transformed. She’s changed an incredible amount, many times. Emotionally, it’s difficult to get a handle on something that’s unstable. The constant flux is part of what’s made my seizures resistant to treatment. Just as I started to think ‘I’m getting a grip on Epilepsy Jo’, she’d throw me a curve ball.
Things came to a head in July 2017. I was under a huge amount of stress because I had left employment. I was entangled in a Personal Independent Payment (PIP) 13 Tribunal 14 and all that involves with the DWP (Department for Work & Pensions) 15 . The ‘domino effect’ these things had on my life led to several dissociative seizures 16 and a frightening period of post-ictal psychosis 17 . It was at this point that I finally saw I was depressed. Family and friends can tell you that you need help but until you acknowledge it yourself it’s not going to register. I started by accepting the things I cannot change, changing the things I can and recognising the difference. I had to (not needed to, certainly not wanted to but had to) accept Epilepsy Jo.
I started working on making friends with Epilepsy Jo. It wasn’t easy, she’s unpredictable, sporadic and she doesn’t mess around when it comes to injuries. I have to keep reminding myself that no matter how angry I am, I can’t change her. She’s not going anywhere. All I can do is work at reducing the chances of her surfacing and manage her appearances when she does. I take care of myself, I exercise, and (give or take a Chocolate Brownie here and there) I eat healthily. She’s less likely to turn up if I’m well rested so there’s a brilliant reason to stay in bed.
In September 2018 just after my 40th birthday I had a VNS (Vagus Nerve Stimulator18) implanted. It’s the biggest intervention into the treatment of my epilepsy in 30 years, with the greatest success. I’ve had the implant nearly 18 months and it’s taken some getting used to, it’s needed some adjusting. But it is the VNS, in combination with lifestyle changes, and several medications at high doses which has (I’m super-excited to say) reduced my seizures.
Finally.
A diagnosis of epilepsy is life changing; there are no two-ways about it. It can be, the end of the world as you know it. But with medication, understanding, support from your loved ones and (for me this was most important), acceptance, it doesn’t have to mean the end of your life.
