Laura Grainger, 34, cannot remember her own wedding day, most holidays and birthdays, or the time she spent at university. The impact of her epilepsy means that memory loss is a huge factor in her life.
Laura's home in Witney is immaculately tidy, with photographs of family and happy occasions in frames. Dotted around the house are keepsakes bearing life-affirming mottoes and quotes about the importance of spending time with loved ones, and, poignantly, the importance of making memories.
Close friends made Laura a book of photographs and memories of her but, she says: “I’m unsure whether I remember the memories or just think I do because I’ve seen the photos.” She used to keep a journal, too, but found it too emotionally difficult to look back at what she had written with no recollection of the events taking place. Now, she just keeps factual diaries with dates written down.
Her diagnosis came after what was an ordinary trip to the shops. “I was in my car with my oldest son Sidney, who was six months old at the time, and I was driving to the local Sainsbury’s. It’s a route I do all the time, and I’ve lived in Witney all my life, but when I got to the roundabout at the end of the road, I was completely lost. I couldn’t work out which exit to take. I circled the roundabout three times in total confusion, and then I chose an exit but it was the wrong one. I got very scared and came home straight away. That’s when I knew I needed to see the doctor.”
Diagnosed with temporal lobe epilepsy and amnesia
Laura’s GP referred her to the neurology department at John Radcliffe Hospital, where she was diagnosed with temporal lobe epilepsy with autobiographical and topographical amnesia. This type of epilepsy is rare, and usually associated with older men – who are often misdiagnosed with dementia. As a result, Laura has been enrolled into the University of Oxford's Memory Research Programme, run by Dr Chris Butler. People with this rare type of epilepsy often have IQs in the 'superior' range. Laura's IQ was tested and came out in this range
She was prescribed lamotrigine which has controlled her absence seizures. Her dose was increased gradually when she was pregnant with her second son Arthur, now four months old. Since having Arthur she has remained seizure-free; a very different experience to after she had Sidney when she was having multiple seizures a day.
"I thought I was going crazy"
"Looking back", she says, "I think I had my first absence when I was 16 on holiday in Turkey. I was waiting for my friend so we could go out for the evening, and I just remember an intense feeling of déjà vu. I felt it coming on as though I was watching myself, then I got very hot and had to be sick. I just put it down to too much sun and exercise. I was too embarrassed to tell anyone but then over the years it happened more and more and I was starting to feel like a different person. I thought I was going crazy.
"Eight years ago, my husband Simon took me to see the doctor about my absences but they put them down to the heart murmur I was born with.
Diagnosis "a positive thing"
"When I got the epilepsy diagnosis, it was such a relief to finally know what it was… I generally see it as a positive thing. I consider myself very lucky to live so close to John Radcliffe Hospital, as they treated me straight away. Also, my absences aren’t as severe as some people have them and mine are under control.
"The diagnosis makes me enjoy every day and I don’t dwell on the past. I’m incredibly honest as I wouldn't remember if I told a lie! I forgive really easily too, which is quite nice because I can’t remember what people have done to upset me and it’s not nice to bear grudges.
"Everything in my life is over-planned"
"The hardest thing, though, is knowing I won’t get my memories back. The doctors have explained that every time I have an absence seizure, my brain wipes a section of my long-term memory bank." Nevertheless, the memory loss has inevitably meant that Laura has had to develop coping strategies in order to keep her life as normal as possible. "Everything in my life is over-planned and very organised. I know where everything is around the house, and I keep photos of all my memories in date order in boxes. That way, if friends mention a holiday or something I don’t remember, I come straight home and look at the photos.
"I love making lists- they’re all around the house. I even have a tea chart in the kitchen with the drink preferences of all my friends and family.
Putting jigsaw pieces back together
"I’ve always been awful at remembering people’s faces, and it’s especially difficult if I’m out and about and bump into someone out of context because I can’t remember how well I know them. Even with friends, I find it hard to remember the details of our last conversation, so I have to ask generic questions to draw out the information. It’s like putting the jigsaw pieces back together each time.
"I used to feel really embarrassed and thought I was a bad friend for not remembering, and I would play along in conversations as though I knew what people were talking about. Now though, I realise it’s not me being a bad listener, so if someone asks if I remember something, I’ll just say ‘no, remind me’. Also now that my friends know, they’ll prompt me and jog my memory."
Laura is unable to drive, and due to her topographical amnesia, still has trouble getting around: " my sense of direction is atrocious. I’m very good at reading maps, because I’ve got a very logical brain, but if I’m out and about I don’t put geographical markers on a road until I’m on it, so I would have to reach a T-junction before knowing which way to turn."
Laura has not allowed her condition to hold her back from succeeding at her job working as a performance improvement manager for Oxfordshire County Council. " I told my boss about my memory loss and he has been incredible. He said: 'we’re really benefiting from your organisation skills and quick-thinking'. He made me feel my condition was a very positive part of me. Not for one moment did I feel he was judging me. Work has been fantastic about my hospital appointments and they let me work from home when I had my ambulatory EEG.
"Will she be a liability?"
I still always plan what I’m going to say before I say it. I have a job that requires me to be professional and I take my work seriously. I need colleagues to take me seriously too. "I always worry that people would think 'will she be a liability?' I’m so concerned about people using my memory loss against me.
In spite of the challenges of her amnesia, Laura and her family face life with positivity, warmth and humour. " My family help me see the humour but they can be so mean though", she laughs, "one year after my diagnosis, my brother was planning to Photoshop some family photos to add an extra person – and then ask me whether I remembered having a fifth sibling that moved away!"
To talk about concerns around epilepsy please call the Epilepsy Society helpline on 01494 601 400.
Epilepsy is not just one condition, but a group of many different 'epilepsies' with one thing in common: a tendency to have seizures that start in the brain.
Did you know that the Greek philosopher Hippocrates (460-377 BC) was the first person to think that epilepsy starts in the brain? Find out more interesting facts and debunked myths around epilepsy and seizures.
There are many different types of epileptic seizure. Any of us could potentially have a single epileptic seizure at some point in our lives. This is not the same as having epilepsy, which is a tendency to have seizures that start in the brain.