I had my first grand mal seizure in a hair salon. I was 18 years old. The night before was a big one, as had most nights been since I’d started University that year. I woke up with the usual twitchiness that followed a night of heavy drinking: an inevitable consequence that symbolised my diminishing brain cells, I’d naively assumed and accepted. My friends noticed I wasn’t my usual sprightly self, but I told them I was still recovering and off I went to the campus hairdresser. I remember having my hair washed, sitting in the hairdresser’s chair, the hairdresser separating a chunk of hair, scissors at the ready… in my next memory, I’m in an ambulance. A paramedic is asking me what my name is. I know what a name is and that I have one, but I have no idea what it is. He tells me I had a seizure. My mind is blank. I have no idea how I got here or where I’m supposed to be. I have no recollection of going to the hospital.
Following that November morning, I have since had seizures on my first day in a new job, in a cinema, away at hotels, at a festival and roadside, among other places. More on the roadside incident later.
It’s the moments before a seizure that are the worst for me, the aura, the humiliation. This is when my speech slurs and skips, I become less aware of my surroundings and I drop anything I might be holding. It can last anything from a few minutes to a couple of hours. I have no idea how aware those around me are until I tell them. It is the when I feel most scared and my utmost vulnerable.
During a grand mal seizure, I am unconscious. What happens during this time both intrigues and embarrasses me. Rather than scare me, this is the part that scares my loved ones. This is their story to tell.
Afterwards, I am lost. My mind has been stolen. Not knowing who I am is a horrible feeling. I am so lucky that this is a temporary experience. As I come around and am told of my seizure, at first I don’t believe it. After all, my conscience didn’t experience it. Then I am desperately sad: it happened again. Then the pain kicks in. My brain and body has been through a lot and it can take a couple of days to recover. Painkillers, sleep and sympathy are welcome.
I used to be able to list the hospitals my epilepsy had taken me to, like a badge of honour. Epilepsy was something I was fighting, something I was going to overcome. Denial and resistance was my method for dealing with the fear, pain and disruption for much of my twenties. I have now learned to accept it, which has unchained me. Allowing epilepsy to become part of me enables me to move on with my life and control my epilepsy, rather than allow it to control me.
Whilst I no longer fear epilepsy itself, I think I will always fear seizures.
A turning point was the roadside seizure. I was now a single parent. My daughter was 10 months old and I had two weeks previously moved to a new town. Being independent was a strong motivator for me, so I found a new home in a new town that provided us with those opportunities.
I had been out the night before. You may have picked up on a theme. My primary seizure trigger is lack of or interrupted sleep. Alcohol and stress are also contributors. Anything that can disrupt peace brain, really. I met my youngest sister at the train station to pick up my daughter, as she had been staying at my parent’s house overnight. I was not in the moment at all. I vaguely remember the journey back toward home with my daughter that took me alongside the busy road where it happened. Before I know it, I am on the floor, paramedics are comforting me. Where is my baby? The pushchair has tipped back to the floor, empty. A stranger is holding my baby. No, I don’t know who I am. No, this isn’t my town. I don’t know why I’m here. Mum. Call Mum.
There is a momentary memory of me and baby in an ambulance. In the next moment, my mum arrives at the hospital. I’m on a hospital bed, in a corridor, my daughter is on my lap. I could have had another seizure at any moment, but of course I was semi-consciously unaware of the danger my daughter was in until my mum arrived. I think from the state I was in before, that was my second grand mal seizure of the day. I would have been alone for the first one.
This day was a game changer. It wasn’t about me anymore. It was about her. My baby, my everything. I can take risks that put myself in danger, but not her. It turned out that I had just crossed the road before the seizure started. Pedestrians on the other side witnessed and ran to my rescue, looking after my daughter and calling the ambulance. So much could have gone wrong. We are so lucky and I am so grateful. I have no idea who the passers by who helped us were, but I am forever thankful.
Lucky is something I often consider myself to be. My seizures are not frequent. They were, but as I have come to accept how external factors can influence my brain, I have been able to have some control over their frequency. So many with epilepsy are not as fortunate. There have been enough times when I have considered my epilepsy irrelevant, but I now know that it is relevant and it is part of who I am.
I encourage others to face their fears. It is the only way to overcome them. Yet, this is the one fear that, for me, I don’t actually think that will work. I can’t ever see myself being comfortable with the feeling that a seizure is on its way, not knowing what it might do to my body, how it will hurt me, who will see me like this and what the longer term effects might be.
If anyone does know a way, please do let me know.