I have been witness to my mother having grand epileptic seizures since I was 5 and remember. It was terrifying, like how watching a werewolf come slowly to rabid life would be…at first. Her guttural squall that funnelled out of her throat as she went blue and wet herself, her rolling around on our Persian carpets, eyes fished upwards into the deep socket of her skull, jerking back and forth, back and forth. I didn’t know what it was that I had done. Been a bad girl. Exasperated her too much with my bossy boot demands of bride dolls and rides on the Ferris wheel.
It would take 20 minutes for her to gain consciousness; recognition. In her dazed state of semi-consciousness she would slur that I must blanket her with cuddles and she would whimper and babble nonsensically: “I love you” over and over again. My mummy was alive, my tummy would simmer with relief. And that’s all I knew when I was 5 years old.
A I grew older her epileptic seizures became a monthly or sometimes even weekly events. “Wahhhhhhhhhh” I’d hear her caterwauling in the concrete yard and quietly I knew it was my mother having one of her ‘turns’. Tiptoeing towards where the stifled chokes were coming from I’d see my grandmother and relatives standing over her and tut tutting. It became a fear I learned to live with…it flowed seamlessly into the quilting of my insides, my makeup.
The fear. It was a monster I dreamt about at nights when I would lie silently next to her and just wait for the seizure to begin. I was on standby mode every night, especially if she had had an upsetting day or had not got enough sleep. I knew she would have a fit for sure. I would lie in the purple-black of night, fear ballooning up my throat, ready to burst my neck.
As I became a teenager, the fear became my friend, the only thing that felt natural to me. By now it had also become embarrassment. Embarrassment of neighbours seeing it, of other people, of pretty boys I wanted to impress. And still, my mother refused to take her medication.
She didn’t agree with taking any medication for anything. It was wrong you see, putting chemicals into your body. But it was not wrong to make your daughter live in terror every day. Terror that her mother might at any time have a seizure and plummet down the stairs, or through the middle of a busy road or amidst a family meal.
Over the years all her seizures caused her to have various black eyes, bruised and broken limbs and a wiped-out memory. Her refusal to take medication caused me to fear her every bath-time, her every tired day, her every lone walk in the woods. I lived on the edge of a dagger, waiting, listening, on 24 hour alert to leap to action just incase she had a fit. She told me to mind my own business when I begged her to please take her medication.
When I myself bit my tongue to down to the deep wells of its root as I had a seizure in 2005 I had broken the last taboo. I was with a rock band in a trashed hotel room, the remnants of debauched sex smouldering on the floor. Festering carcass- resembling human body odour oozing from the steaming bowels of the hotel room. There had been cocaine and booze. My tongue was a bloodied mess, shredded and defeated in battle with my jagged wolf teeth. It bloody hurt. Now I had lost all my porn star-ish ness within those 3 minutes. I was an epileptic retard. I had well and truly shamed myself. After a night of being a pussycat, a vixen, rolling my body, snake and lithe curves twisting with stocking-thighed come hither feline lashed eyes, kissing the boys, layering myself open like meat, eating them one by one, moaning, yelping and being taken in every way, I had cancelled it all out by ricocheting off the wall, my eyes rolled back, my head jerking back and forth like an electrocuted inmate from One Flew Over the Cuckoo’s Nest. This was more stigmatized than if I had told them that I was schizophrenic. Epilepsy: on the same ‘uncool-ness’ factor as being a fat ginger librarian with halitosis.
I had closed my eyes and wished that it had been a cocaine seizure. Even temporary death would have been more rock n roll. But no such luck. The neurologist confirmed my shame. Drugs had triggered epilepsy in me. Not a cool over-dosing, crack-whore seizure which was more appropriate to rock n roll, but an epileptic one. Damn. I had fallen onto the pile with the fat balding middle-age dads who come to see rock bands; the disabled; and the spotty teenage boys.
I could tell no other rock band of this hideous wart of a secret. There was so much stigma attached to being epileptic that surely I would be outcast in the rock n roll world. All they would think was how could they let an epileptic slut perform oral sex on them knowing that at any time she could chomp it off during a fit? I was a hazard. I took round purple horse pills hoping that funny feeling I kept getting would dissolve into fairytale land. I sucked through straws for my tongue was still limping away, dented with the ditches of my teeth marks. I slept all days and nights and tried to get better. This stigma….this “sacred disease” as the ancients called it was associated with being mad, mentally retarded, a freak-show. I couldn’t leave my home for months out of fear for showing my freakishness to the world.
Yesterday I was older than a teenager, quite grown up actually. I found my mother in a giant pool of blood. She had cracked her head on the concrete floor of a superstore. Lying still as a doll, eyes heavenward, surrounded by paramedics and such. The food hall was drenched in her blood, shopping bags splashed. She had had another seizure, falling on the back of her head and cracking it. Her memory was not in place. She vomited what looked like blood. In the ambulance on the way to ER I saw her drenched in blood pouring down her neck and I went: “oh”. This is what it will be like forever. I may as well get used to it.