I was diagnosed with epilepsy twelve months ago- but I’ve had it all my life. I have a friend who’s a bit older than me who has just found out she also has it. She’s terribly disappointed, because she always thought she was psychic. But my story’s a bit different.

I was born in Bougainville, PNG forty-nine years ago, in an isolated Catholic Mission, in very primitive circumstances. My birth was a difficult one. Malaria was common then, as it still is today. Maybe one of these things caused my epilepsy, or maybe I just inherited a ‘lousy brain”. It doesn’t matter much I guess.

I remember the native Bouganvilleans identified it early. I stopped suddenly on the road to preschool, and must have rolled my eyes or done something strange, because they fell about laughing, as they did at any sign of ‘lunacy’.

As a child I spoke to my parents about strange feelings and dreams, but my parents just regarded it as part of my personality.

“I feel really pure, like a dewdrop” I’d say.

“Oh she very creative, isn’t she?” they would reply.

“Sometimes I go down this tunnel really fast and it’s smooth and it’s beautiful, and then it gets really scary and bumpy…”.

“Don’t be silly dear, not in front of visitors”. It became much worse when the hormones kicked in.

“Ingrid’s spaced out again” they’d say. It all became a bit of a family joke.

On some level quite early I realised there was a shift in my parent’s attitude. Their hopes and ambitions now rested on my brother. Somehow-I felt- I had failed them, and I didn’t quite know why.

This is probably when I first began to grow tentative, and shy. I was sent to boarding school in Sydney. There, teachers would ask me in the middle of a class, “Are you alright Ingrid?” and I would wonder why they asked. I would sometime report strange sensations but I ended up feeling silly, so I just stopped saying anything.

I’ve always had lots of trouble with short term memory, and speech. I had to work very hard to achieve, and in retrospect this was socially isolating. I became a bit of a loner. I didn’t want to speak because my speech was so clumsy, so I became a good listener.

My peers began to call me ‘different’ or ‘strange’ and I found a profession that celebrated people who were different- the Theatre! I became quite good at being different, and went on to do a lot of film and television work. Those as old as I am, may remember a game show called Blankety Blanks, hosted by Graham Kennedy. They might even remember me having one small seizure after another, being mocked by Kennedy, and getting paid for it.

It became normal for me to live in a mist, a place where I couldn’t hear or speak coherently, and where although I could see, I had to process information very slowly.

I was treated for anxiety most of my life. I felt very frustrated by doctors, psychologists, and psychiatrists because they never seemed to get to the bottom of my problems. In the end, I just decided I must be neurotic. I look back at the hours I’ve spent in professional’s offices and surgeries, and I remember the seizures I know I’ve had, as I’ve sat opposite them, and I wonder why no one ever picked it up!

I can’t tell for sure what unmasked my epilepsy. At a doctor’s appointment, instead of saying “I keep losing my memory of events,” I said something I’ve never said before.

“I’m having blackouts.”

I was sent immediately for tests. I sat in the neurologist’s office after the MRI and the EEG, waiting for the reports, expecting it all to be another waste of time and money.

I felt so relieved when he spread all those squiggly lines in front of me and replied, “You have epilepsy, and here it is in black and white. You’ve had epilepsy for a very long time, haven’t you?”

I have simple and complex partial seizures originating in the left temporal lobe- mirrored on the right side probably because it was not diagnosed and treated earlier.

I recently had a neuropsychological assessment which I found invaluable. It helped me to put into words the difficulties I was experiencing, and to find practical ways to manage them. It also identified chronic depressive symptoms. I was surprised to find it is not uncommon for complex partial seizures and depression to be linked. I hope my story will be useful to others.